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The Role of Speech-Language Pathologists in Palliative Care: Exploring the Issues and
Reaching Consensus
A thesis submitted to fulfil requirements for the degree of Doctor of Philosophy
The University of Sydney
Faculty of Health Sciences Discipline of Speech Pathology
Katherine Kelly B. App. Sc. (Speech Pathology), Dip. Management,
Grad. Cert. Public Sector Management
Supervisors Dr Hans Bogaardt, Associate Professor Steven
Cumming, Dr Belinda Kenny Faculty of Health Sciences, Discipline of Speech
Pathology, University of Sydney
June 2019 (Amended October 2019)
i
STATEMENT OF ORIGINALITY
This is to certify that to the best of my knowledge, the content of this thesis is my own
work. This thesis has not been submitted for any degree or other purposes. I certify
that the intellectual content of this thesis is the product of my own work and that all
the assistance received in preparing this thesis and sources have been acknowledged.
Approval for the research presented in this thesis was given by the South Western
Sydney Local Health District Human Research Ethics Committee (HREC reference
LNR/15/LPOOL/8).
Katherine Kelly
22nd June 2019
ii
AUTHORSHIP ATTRIBUTION STATEMENT
Chapter 2 of this thesis is published as “The role of speech-language pathologists in
palliative care: Where are we now? A review of the literature.” Published in Progress
in Palliative Care (2016; 24(6), 315-323). DOI 10.1080/09699260.2016.1141745. I
conceived and designed the review methodology, coordinated the literature review
and wrote the manuscript.
Chapter 3: “Getting comfortable with ‘comfort feeding’: An exploration of legal and
ethical aspects of the Australian speech-language pathologist’s role in palliative
dysphagia care.” Published in the International Journal of Speech-Language
Pathology. (2018; 20(3), 1754-9515) DOI 10.1080/17549507.2018.1448895. I
conceived the idea, reviewed the literature and wrote the manuscript.
Katherine Kelly
22nd June 2019
As supervisor for the candidature upon which this thesis is based, I can confirm the
authorship attribution statements above are correct.
Hans Bogaardt
28th June 2019
iii
DECLARATION OF COMPLETION
This is to certify that the thesis entitled “The Role of Speech-Language Pathologists
in Palliative Care: Exploring the Issues and Reaching Consensus” is submitted by
Katherine Kelly in fulfilment of the requirements for the degree of Doctor of
Philosophy and is in a form ready for examination.
Katherine Kelly
22nd June 2019
iv
ABSTRACT
Speech-language pathologists (SLPs) have become part of multidisciplinary
palliative and end-of-life (EOL) care services progressively over the last 20 years.
This work is embedded in both specialist palliative care settings, and in more
generalist caseloads, such as aged care and general medical. Their work in palliative
dysphagia (swallowing) management includes assessment of impairment, strategies to
minimise the risk of aspiration and optimise nutrition and hydration and/or
maximising the enjoyment of eating and drinking, oral care/stimulation and
minimising any associated discomfort and stress. Palliative communication
assessment and intervention may include provision of information about a person’s
communicative strengths and weaknesses, communication therapy, communication
strategies, alternative and augmentative communication systems and education for
communication partners on appropriate communication strategies. SLPs also have a
potential role in advance care planning, giving information about potential changes to
eating, drinking and communication likely to occur with the progression of a life-
limiting disease, providing information about capacity and supporting people with
communication impairments to express their wishes. There has, however, been very
limited research-based evidence and professional guidance in this valuable but
emerging area of practice.
To address the gaps surrounding the SLP role in palliative care, the aims of
this thesis are:
1. To critically appraise the literature describing the SLP role in palliative care.
2. To describe the medico-legal and ethical aspects of palliative dysphagia
management to increase SLPs’ awareness of a range of important issues.
3. To identify and describe current SLP services. More specifically it will
identify the nature of SLP palliative intervention across palliative phases and
within caseloads, clinical settings and service delivery models in which SLPs
provide palliative care.
v
4. To determine how SLP’s perceived best quality service compares with current
practices.
5. To identify barriers to providing optimal care, and what SLPs recommend to
facilitate improvement in clinical practice and palliative care.
6. To define key expectations of the role and agreed practice of SLPs in
palliative and EOL care, from the perspective of practicing SLPs.
The first aim was addressed through a narrative exploration of published
literature. A diverse role in palliative and EOL is outlined in descriptive and opinion-
based publications, but an empirical evidence base is only just emerging. What is not
clear from the existing evidence base is whether the role described in the literature is
reflected in actual SLP practice. Potential challenges to providing SLP services
include: the impact of working with people who are dying, limited professional
preparation, access to further education and legal and ethical considerations. There are
few official resources to guide SLPs in palliative and EOL care. None of the existing
research studies provide sufficient definition of the SLP role that is necessary to
develop formal practice guidelines. This is particularly necessary in relation to
palliative dysphagia management, where a range of ethical and medico-legal
challenges exist. Further research is required to strengthen the evidence base to guide
SLP practice and promote awareness of the SLP role amongst health care consumers
and multidisciplinary colleagues.
A detailed examination of legislation, medico-legal and ethical literature
addressed the second aim of the thesis. Several legal concepts were applied
specifically to palliative dysphagia management: the status of nutrition and hydration
as a medical treatment, legal capacity, informed consent and reasonable care. A
decision making model was proposed, combining consideration of both legal and
ethical concepts. Recommendations were made for SLPs’ clinical documentation to
ensure all these concepts are addressed as part of clinical care. Given the importance
of “accepted practice” for defining reasonable care, further research that defines SLP
practice in palliative and EOL care is essential not just from a clinical perspective, but
from a legal one as well.
vi
A two-round eDelphi questionnaire methodology with practicing SLPs was
used to address the remaining aims of this thesis. The results of the first eDelphi
round addressed the third, fourth and fifth research aims. It was identified that SLPs
provide palliative intervention for people with a range of conditions in a range of
service contexts, across the full range of SLPs services. Palliative and EOL work is
not limited to specialist palliative care positions. A range of barriers and facilitators to
working effectively in this space were explored, and SLPs identified a gap between
current practice and perceived best practice.
The results of the second eDelphi round addressed the sixth and final aim of
the thesis. Key expectations of the role and agreed practice of SLPs in palliative and
EOL care were expressed by practicing SLPs. A set of 28 specific statements was
generated from information collected in the first eDelphi round. Consensus was
reached on these statements within the second eDelphi round. The statements align
with the Australian National Consensus Statement: Essential Elements for Safe and
High-Quality End-of-Life Care (Australian Commission on Safety and Quality in
Health Care, 2015). Patient access to appropriate intervention for communication and
swallowing changes is emphasised, as part of comprehensive multidisciplinary care.
They describe the diverse, flexible and patient-centred nature of these interventions,
focusing on patients’ comfort and quality of life. Education of SLPs on palliative and
EOL care during pre-professional training, and throughout their professional career, is
supported to ensure SLPs understand their role and can provide care that is
appropriate to this unique area. Ongoing research and better evaluation of the
outcomes of SLP care is endorsed.
This program of research has contributed to the emerging landscape of
empirical evidence in the field of palliative SLP. Specifically, it has appraised the
literature that describes the SLP role in palliative care and described the medico-legal
and ethical aspects of palliative dysphagia management to increase SLPs’ awareness
of a range of important issues. The nature of current SLP work in palliative and EOL
care has been explored and SLPs’ perceived best quality service has been established.
It has confirmed that a range of barriers contribute to less than optimal current
practice and collected SLPs recommendations for improving clinical practice and
patient care to people whose care is palliative. Finally, this thesis has defined key
vii
expectations of the role and practice of SLPs in palliative and EOL care, from the
perspective of practicing SLPs. Extensive opportunities exist for further research and
development in the area of palliative and EOL care, which will be most effectively
achieved in partnership with our allied health, medical and nursing colleagues.
viii
TABLE OF CONTENTS
STATEMENT OF ORIGINALITY ................................................................................ i
AUTHORSHIP ATTRIBUTION STATEMENT......................................................... ii
DECLARATION OF COMPLETION ........................................................................ iii
ABSTRACT .................................................................................................................. iv
TABLE OF CONTENTS ........................................................................................... viii
LIST OF TABLES ......................................................................................................... x
LIST OF FIGURES ....................................................................................................... x
LIST OF APPENDICES ............................................................................................... xi
LIST OF ABBRIEVIATIONS ..................................................................................... xi
OVERVIEW: PRESENTATION OF THESIS ........................................................... xii
PUBLICATION AND PRESENTATIONS .............................................................. xiii
ACKNOWLEDGEMENTS ......................................................................................... xv
CHAPTER 1: INTRODUCTION .................................................................................. 2
CHAPTER 2: LITERATURE REVIEW ..................................................................... 15
CHAPTER 3: MEDICOLEGAL AND ETHICAL ASPECTS OF PALLIATIVE
DYSPHAGIA CARE ................................................................................................... 26
CHAPTER 4: eDELPHI STUDY METHODOLOGY ................................................ 40
CHAPTER 5: CHARACTERISTICS AND ACTIVITY OF SPEECH-LANGUAGE
PATHOLOGISTS IN PALLIATIVE AND END-OF-LIFE CARE ........................... 56
CHAPTER 6: STRATEGIES FOR IMRPROVING PRACTICE IN PALLIATIVE
AND END-OF-LIFE CARE ........................................................................................ 77
CHAPTER 7: THE ROLE OF SPEECH-LANGAUGE PATHOLOGISTS IN
PALLIATIVE AND END-OF-LIFE CARE: REACHING CONSENSUS ............... 92
CHAPTER 8: SUMMARY AND CONCLUSIONS ................................................. 116
REFERENCES .......................................................................................................... 124
ix
APPENDICES ........................................................................................................... 138
x
LIST OF TABLES
Table 1. International mapping of palliative care .......................................................... 4
Table 2. Participant demographics ............................................................................... 51
Table 3. Settings and services ...................................................................................... 61
Table 4. Participant demographics ............................................................................... 80
Table 5. Differences between participants’ actual and ideal frequencies for specific
clinical activities .......................................................................................................... 83
Table 6. Knowledge and confidence in palliative and EOL care ................................ 87
Table 7. Participant demographics ............................................................................... 97
Table 8. Settings and services ...................................................................................... 98
Table 9. Level of agreement with consensus statements ........................................... 101
LIST OF FIGURES
Figure 1. Research design........................................................................................................ 42 Figure 2. Concept mapping for consensus statement development ......................................... 49 Figure 3. Intensity of service by palliative phase (n = 233) .................................................... 62 Figure 4. Participants who provided specific forms of assessment and intervention by
palliative phase (n = 198) ........................................................................................................ 63 Figure 5: Participants who performed dysphagia-related assessment and interventions (n =
205) .......................................................................................................................................... 66 Figure 6: Participants who performed communication-related assessment and interventions (n
= 205) ...................................................................................................................................... 69 Figure 7: Participants who performed care planning interventions (n = 205) ......................... 70 Figure 8. Changing current to ideal practice ........................................................................... 82 Figure 9. Ranked barriers to effective care.............................................................................. 85 Figure 10. Ranked methods of skill development ................................................................... 85 Figure 11. Ranked strategies for improvement ....................................................................... 86 Figure 12. Example statement concept map ............................................................................ 94 Figure 13. Statements with strongest agreement ..................................................................... 99 Figure 14. Statements with weakest agreement..................................................................... 100
xi
LIST OF APPENDICES
APPENDIX 1: QUESTIONNAIRE – ROUND 1 ..................................................... 139 APPENDIX 2: ELECTRONIC INVITATION TO PARTICIPATE – ROUND 1 ... 146 APPENDIX 3: PARTICIPANT INFORMATION STATEMENT & INFORMED CONSENT – ROUND 1 ............................................................................................ 147 APPENDIX 4: QUESTIONNAIRE – ROUND 2 ..................................................... 150 APPENDIX 5: ELECTRONIC INVITATION TO PARTICIPATE – ROUND 2 ... 161 APPENDIX 6: PARTICIPANT INFORMATION STATEMENT & INFORMED CONSENT – ROUND 2 ............................................................................................ 162 APPENDIX 7: CONSENSUS STATEMENTS ........................................................ 165 APPENDIX 8: SUPPLEMENTARY MATERIAL TO PUBLISHED ARTICLE IN CHAPTER 3 .............................................................................................................. 168
LIST OF ABBRIEVIATIONS
ACSQHC Australian Commission for Safety and Quality in Health Care
EOL End of life
NCS National Consensus Statement: Essential Elements for High Quality
End-of-Life Care
PCC4U Palliative Care Curriculum for Undergraduates
PCOC Palliative Care Outcomes Collaboration
PCWP Palliative Care Working Party (South Western Sydney Local Health
District)
PEPA Program of Experience in the Palliative Approach
PROMS Patient Reported Outcome Measures
RAND Research And Development Corporation
SLP Speech-language pathology / pathologist
SWSLHD South Western Sydney Local Health District
xii
OVERVIEW: PRESENTATION OF THESIS
This thesis is presented as a compilation of two published papers and six thesis
chapters. Contained within is the description of the methods, results and discussion of
the two-stage research project undertaken during this PhD candidature. The author of
this thesis was the lead/corresponding author of the included published papers.
Chapter 1: Introduction
Chapter 2: “The role of speech-language pathologists in palliative care: Where are we
now? A review of the literature.” Published in Progress in Palliative Care (2016;
24(6), 315-323). DOI 10.1080/09699260.2016.1141745
Chapter 3: “Getting comfortable with ‘comfort feeding’: An exploration of legal and
ethical aspects of the Australian speech-language pathologist’s role in palliative
dysphagia care.” Published in the International Journal of Speech-Language
Pathology. (2018; 20(3), 1754-9515) DOI 10.1080/17549507.2018.1448895
Chapter 4: eDelphi study methodology
Chapter 5: Characteristics and activity of speech-language pathologists in palliative
and end-of-life care
Chapter 6: Strategies for improving practice in palliative and end-of-life care
Chapter 7: The role of speech-language pathologists in palliative and end-of-life care:
Reaching consensus
Chapter 8: Summary, conclusions and recommended directions for further research
xiii
PUBLICATION AND PRESENTATIONS First Author Publications
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Cumming, S. & Bogaardt,
H. (2016). The role of speech-language pathologists in palliative care: Where are we
now? A review of the literature. Progress in Palliative Care, 24(6), 315-323. DOI
10.1080/09699260.2016.1141745.
Kelly, K., Cumming, S., Kenny, B., Smith-Merry, J. & Bogaardt, H. (2018) Getting
comfortable with “comfort feeding”: An exploration of legal and ethical aspects of the
Australian speech-language pathologist’s role in palliative dysphagia care.
International Journal of Speech-Language Pathology. 20(3), 1754-9515. DOI
10.1080/17549507.2018.1448895.
Conference Presentations / Posters
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. What can we do when someone is “putting down the spoon”? SWSLHD
Palliative Care Education Day October 2015; Sydney.
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. The role of speech-language pathologists in palliative care: Exploring
the issues and reaching consensus. Health Beyond Research and Innovation Showcase
May 2016; Sydney.
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. A bitter mouthful to swallow? Differences between optimal and actual
speech-language pathology care of palliative patients with cancer. Annual Meeting on
Supportive Care in Cancer May 2016; Adelaide.
xiv
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. (2017) Do we “comfort always”? An exploration of speech-language
pathology practice in palliative care. Speech Pathology Australia Annual Conference
May 2017; Sydney.
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. Getting comfortable with comfort feeding: Medicolegal aspects of
palliative dysphagia management. Speech Pathology Australia Annual Conference
May 2017; Sydney.
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. (2018) Reaching consensus on speech pathology in palliative care.
Health Beyond Research and Innovation Showcase, May 2018; Sydney.
Kelly, K., Corry, A., Gilsenan, K., Tamone, C., Vella, K., Kenny, B., Cumming, S.,
Bogaardt, H. (2017) Reaching consensus on speech pathology in palliative care: A
Delphi methodology. Speech Pathology Australia Annual Conference May 2018;
Adelaide.
Other Publications
Bogaardt, H., Veerbeek, L., Kelly, K., van der Heide, A., van Zuylen, L. & Speyer, R.
(2015) Swallowing problems at the end of the palliative phase: Incidence and severity
in 164 unsedated patients. Dysphagia, 30, 145-151. DOI 10.1007/s00455-014-9590-1
Smith, H. & Kenny, B. (2018) Recipes for successful provision of nutrition and
hydration at the end of life. Journal of Clinical Practice in Speech-Language
Pathology. 20(3), 169-173.
(Although not a listed author, Katherine Kelly was one of the two experienced
clinicians interviewed to generate the content of this discussion paper.)
xv
ACKNOWLEDGEMENTS
The topic of this thesis had been playing on my mind for some time. I began
work as a new graduate speech pathologist with a generalist caseload in a large acute
metropolitan hospital. Like any novice, I had so much to learn. Initially, the idea of
working with someone who was “palliative” was scary. The idea of wanting to help,
but feeling I had nothing to offer was something that I struggled with. I quickly
learned that “once they’re palliative, we withdraw from the patient’s management”. I
would document “review on request” in the patient’s medical record. I then started
working in oncology, which became my passion. I started doing more “palliative”
work. I saw patients who were having treatment for recurrences as well as curative
treatment. Ultimately, I just “got on with it”. But bound up as I was in ticking all the
boxes and doing my job, I never quite engaged with what it meant to put quality of
life front and centre.
My major intellectual shift happened when I moved to a smaller hospital. This
one had an inpatient palliative care ward and a community palliative care caseload
that we shared with the community aged care service. Whilst I worked there, several
of my family members had a slow decline in their health and died. Suddenly, this
thing called “palliation” looked very different. I realised that we had a whole lot more
strings to our professional bow, and we could bring a lot more to our patients who
weren’t going to survive their illness. The idea of helping people to live with illness
as best they could suddenly took on a new meaning. Everyone was different, and the
process of problem solving and meeting an individual’s own goals was such a
rewarding process. One of my most vivid and precious memories is of seeing a man at
home on the day he died, and helping his wife respond to his raspy requests for
“water”, despite the fact that he could barely move his arms, legs or mouth.
I always had a lurking suspicion that we as Speech Pathologists weren’t using
all the tools in our box for these patients. We’d discuss the challenges of knowing
whether patients were palliative or not, or those on the ward that were for “comfort
care”. We’d discuss how to document our recommendations so that the patient’s
xvi
wishes were met, but so that we didn’t do the wrong thing “recommending” foods and
drinks that gave the person aspiration pneumonia, even if the disease or condition
they had was going to end their life. In the midst of a working party to solve the
problem with a standard sticker for the patients’ notes that described “comfort
feeding”, I had an epiphany. We were trying to solve the problem backwards. It
wasn’t so much as a sticker as a Band-Aid for the problem that made us feel the most
uncomfortable. We need, I thought, to go back to the beginning. What are we
supposed to be doing for these patients? Do we do it? What are all the challenges?
How can we do this better? I asked the uncomfortable questions, and ultimately ended
up heading off on my own path to figure this out. At that point in time, there was
really no research to answer those questions. So, I thought, why couldn’t my
colleagues and I start to fill that gap? Fortunately, my professional director thought
this was a good idea, and Anna, Claire, Kerry and Kylie joined me, with Hans to help
us tackle research for the very first time. The South Western Sydney Local Health
District Speech Pathology Palliative Care Working Party was born, and the research
described in this thesis is the outcome.
There are so many people without whom this journey would not have been
possible, to whom I express my deepest gratitude. Firstly, my husband Michael, who
has given me support and motivation, whilst also completing a degree of his own. My
parents Robyn and Anthony instilled in me curiosity, patience and a love of learning
for its own sake, which has led me to the path of research. My manager, Sue Colley,
has continued to put opportunities within my reach, and encouraged me to turn my
ideas on palliative and end-of-life work into postgraduate research. Sue’s
encouragement assisted in the formation of the South Western Sydney Local Health
District Speech Pathology Palliative Care Working Party, the team through which this
research project was possible. I thank Anna Corry, Kerry Gilsenan, Claire Tamone
and Kylie Vella for sharing the vision and the research journey, and my friend Kate
Vickers for proofreading this thesis. Finally, I am so grateful for the support, patience
and time given to my by my supervisors Hans Bogaardt, Steven Cumming and
Belinda Kenny. The diversity of their knowledge, experience and approach to the
subject hugely expanded my thinking and skillset. I hope I can take what I have
learned into all areas my work to critically evaluate and enhance the care provided to
anyone who has contact with the Australian healthcare system.
1
CHAPTER 1
Introduction
2
CHAPTER 1: INTRODUCTION
Palliative care
“Palliative care is an approach that improves the quality of life of patients
(adults and children) and their families who are facing problems associated with life-
threatening illness. It prevents and relieves suffering through the early identification,
correct assessment and treatment of pain and other problems, whether physical,
psychosocial or spiritual” (World Health Organisation, 2018). It is a person-centred
approach, that also responds to the need for supporting not only the individual, but
those within a person’s close networks, including family, carers and friends (Palliative
Care Australia, n.d.). The right to palliative care is explicitly recognised under the
human right to health (World Health Organisation, 2018). Comprehensive palliative
care is achieved through a team approach, which includes doctors, nurses, social
workers, physiotherapists, occupational therapists, speech-language pathologists,
psychologists and trained volunteers (Palliative Care Australia, n.d.; World Health
Organisation, 2018). It may be provided wherever a person receives care, including
homes, residential care facilities, hospices, hospitals outpatients and community-
based services (World Health Organisation, 2014). Despite having origins in cancer
care, it is now acknowledged that palliative care is required for a wide range of
chronic diseases (World Health Organisation, 2018). The need for palliative care will
only increase, as the population ages and modern medical care supports people with
chronic diseases to live longer (Clark, Gardiner, & Barnes, 2016).
An evolving body of literature emphasises the benefits of palliative care, but it
is still limited. There are unique challenges and ethical considerations in conducting
research in palliative care, especially with people with life-limiting illnesses.
Conflicting views exist suggesting that it can be both unethical to involve people with
advanced disease in research, alongside the view that it is unethical not to include
them. The former position argues that the potential costs to the person outweigh the
benefits; the latter highlights evidence that participation in sensitively designed
research has been beneficial to people with life-limiting disease (Leslie, Sandsund, &
Roe, 2014). Methodological concerns and the dearth of population-appropriate
3
outcome measures constrain the conclusions that can be drawn from some of the
existing research (Zimmerman, Riechelmann, Krzyzanowska, Rodin, & Tannock,
2008). Nonetheless, strong-moderate evidence does exist demonstrating that timely
provision of palliative care can result in increased mood and quality of life, better
satisfaction with care, prolonged survival, more cost effective health-care utilisation,
advance care planning and better end of life care (Salins, Ramanjulu, Patra, Deodhar,
& Muckaden, 2016).
International trends in palliative care
The Worldwide Palliative Care Alliance estimates that over 20 million people
internationally receive palliative care (World Health Organisation, 2014). Most (69%)
are adults over 60, with a diverse mix of cardiovascular disease, cancer, dementia,
neurodegenerative conditions, chronic respiratory conditions, diabetes and rheumatoid
arthritis. Of the 25% between the ages of 15-59, palliative care for HIV/AIDS is most
common. Children account for 6% of the population receiving palliative care, with the
greatest proportion requiring care for congenital anomalies and neonatal conditions
such as sepsis, and birth trauma. The need for palliative care for progressive non-
malignant diseases and cancer is relatively evenly distributed across regions, and care
for people with HIV/AIDS predominates in the African region (World Health
Organisation, 2014).
International palliative care services are growing, but their distribution and
availability varies by geographical location. As many as 80 million people who would
benefit from palliative care do not receive it (Clark et al., 2016). The unmet need is
most prevalent in low-income countries, where illnesses are typically diagnosed at a
later stage when curative intervention may be neither effective nor appropriate (Clark
et al., 2016). Lynch, Connor and Clark (2013) have mapped the international
availability of palliative care using a four-tiered taxonomy. Of the world’s 234
countries, 136 (58%) had one or more established hospice or palliative care services,
but only 20 (8.6%) were at a stage of advanced integration of palliative care into
mainstream health service provision (Table 1).
4
Table 1. International mapping of palliative care Group Definition N % Examples
1 No known hospice-palliative care activity 75 32%
Afghanistan, Micronesia, Senegal, Somalia, Tonga
2
Capacity building (organisational, workforce and policy) evidence in palliative care, but no formal service established
23 10%
Bolivia, Fiji, Nicaragua, New Guinea
3a Isolated palliative care provision that is often dependent on charitable donors 74 31.6%
Cambodia, Jamaica, Mexico, Philippines
3b Generalised palliative care provision that is still largely independent of the healthcare system
17 7.3%
Argentina, Czech Republic, India, Portugal
4a Hospice-palliative care services at a stage of preliminary integration into mainstream service provision
25 10.7%
China, Denmark, New Zealand, Serbia
4b Hospice-palliative care services at a stage of advanced integration into mainstream service provision
20 8.6%
Australia, Canada, Germany, Sweden
Four key barriers to international palliative care development have been
identified (World Health Organisation, 2014). Avoiding discussion of death as being
harmful to a person’s health and wellbeing can prevent the uptake of palliative care
services by people with life-limiting illnesses. Where this belief, and superstitions
about inviting death by speaking of it, persists there has been limited engagement
with the public and policy makers to develop palliative models of health care.
Conversely, in countries where there has been a cultural shift towards better planning
for EOL and palliative models of care, evidence suggests that survival rates for people
with life-limiting illnesses have actually increased (World Health Organisation,
2014). Palliative medication (especially opioid) availability is an issue for 80% of the
world’s population; Australia, Canada New Zealand, the USA and several European
5
countries account for more than 90% of the global consumption of opioid
anaesthetics. Insufficient education for health professionals in palliative care is
widespread. Most educational materials are in English, limiting access by non-English
speakers. Inconsistent policy approaches also result from the emergent evidence base
of international palliative care research (World Health Organisation, 2014).
While there are important ethno-cultural differences in how EOL preparation
and care is viewed, there are also many similarities across cultures, emphasising the
importance of developing individualised plans of care rather that culturally standard
models. Bosma, Apland and Kaszanjian (2010) completed a review of multiple
qualitative studies of the conceptualisation of palliative care across culturally diverse
populations. The did find incongruence between the Western emphasis on directly
informing people about their prognosis, and several other cultures, such as Indian,
Filipino, Italian, Chinese and Arab, but also variation within cultures. Common
themes across cultures included: the need for appropriate pain management, the
opportunity to attend to unfinished business and provision of physical, emotional,
social and spiritual needs of terminally ill individuals and their families. The shared
emphasis on treating people with respect and kindness, and listening carefully, should
assist in responding to the specific needs and expectations of an individual and their
broader network, rather than producing a standardised approach to care.
Geopolitical and structural differences also influence the manner in which
palliative and EOL care are delivered. For example, the delivery of palliative care in
Argentina is coordinated through a not-for-profit non-government organisation
(NGO) where the public health system employs the staff and the NGO pays or
supplements wages for the provision of palliative care (World Health Organisation,
2014). In India, the Neighbourhood Network in Palliative Care (NNPC) operates a
model of care where a network of volunteers provide home based and community
palliative care under the supervision of trained health care professionals, with
financial support from local and state governments. The Model Palliative Care
Program in Vietnam is associated with the Ho Chi Minh City Cancer Hospital, with
inpatient and outpatient palliative care covered by the health insurance system.
6
Palliative care has been receiving increasing attention from global policy
makers, such as the World Health Organisation, but without goals or performance
indicators for measuring the expansion of services, practical implementation at a
national level can be piecemeal (Clark et al., 2016). Clark et al. (2016) note that a
strong research evidence base is necessary to influence policy development, but that
studies are predominantly observational, rather than interventional. They advocate for
interventional research to conceptualise palliative care in economic terms to better
engage with world-wide policy makers. In addition to reducing human suffering,
better access to palliative care can decrease countries’ overall health expenditure
through reduced usage of primary and critical care and limit the cost of health care to
individuals (Clark et al., 2016). Policy development must establish palliative care
guidelines, improve medication availability, implement monitoring of palliative care
accessibility, integrate palliative care into education and training and ensure that
people with life-limiting illnesses are consulted in the development of palliative care
related policies and services (World Health Organisation, 2014).
Palliative care in Australia
Palliative care in Australia has developed over the last 40 years. Australia is
one of the small percentage of Group 4 countries, where palliative care is integrated
into mainstream health service provision (Lynch, Connor, & Clark, 2013). It is
provided by many different health practitioners in a variety of health settings; in
homes, hospitals, residential aged care facilities, palliative care units and hospices.
Complex and varied models of care respond to differing patient needs. Around 60%
of people receiving palliative care have cancer; the remaining 40% have other chronic
conditions (Currow & Phillips, 2013).
A range of very deliberate Commonwealth-driven strategies has placed
Australia at the forefront of palliative care provision internationally. A national
palliative care strategy has been supported by dedicated research funding and capacity
building and health workforce education in palliative care (the Palliative Care
Education and Training Collaborative, consisting of the Palliative Care Curriculum
for Undergraduates (PCC4U) and the Program for Experience in the Palliative
Approach (PEPA)). PCC4U is a suite of online learning modules, consisting of
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written resources, case studies and video vignettes. These modules focus on:
principles of palliative care, communicating with people with life-limiting illnesses,
clinical assessment and intervention in palliative care, optimising function in
palliative care, multidisciplinary care, caring for Aboriginal people with life-limiting
conditions, caring for children with life-limiting conditions, and culture-centred care
of people with life-limiting conditions (http://www.pcc4u.org). PEPA builds the
capacity of health professionals to deliver palliative care via funded clinical
workforce placements and workshops, supporting the formation of professional
support networks (http://www.pepaeducation.com). Palliative medications have been
included in the Pharmaceutical Benefits Scheme (PBS) to improve patient access. The
Palliative Care Outcomes Collective (PCOC) has been established for comprehensive
data collection and analysis and CareSearch has brought together relevant evidence in
real time from literally hundreds of sources (Currow & Phillips, 2013).
Despite this favourable position, there are still gaps and challenges in
palliative care provision that will require innovative solutions to ensure all Australians
have timely access to the palliative care they require. The demand for services will
only increase. Australians are now more likely to die from age-related and chronic
conditions than infections disease or injury. There has been a steady increase in the
number of deaths (given overall population growth) since 1990, by 0.6% per year for
males and 1.2% for females (Palliative Care Australia, 2012). Palliative care
providers must respond to the differing care needs depending on the conditions that
people have, their age and other cultural variables. Service provision is not yet fully
equitable, and groups that are at risk of having unmet needs include: older
Australians, those with non-cancer conditions, children, people in rural and remote
Australia, those from low socioeconomic backgrounds, the homeless, those with
physical and intellectual disability, indigenous Australians and those from other
diverse cultural backgrounds (Palliative Care Australia, 2012).
Interprofessional collaboration in palliative care
Effective interprofessional collaboration is fundamental to the provision of
quality palliative care. Interprofessional collaboration is a complex process where
different professions and professionals work together to optimise patient care by
8
sharing expertise, knowledge and skills (Nancarrow, Booth, Ariss, Smith, Enderby &
Roots, 2013). It is necessary where patients have complex needs, no one health
professional can meet all those needs and an increasing complexity of skills and
knowledge is required to provide comprehensive care (Nancarrow et al., 2013). The
uncertainty associated with life-limiting illnesses can undermine professional role
clarity and compromise the quality of care, particularly when providing palliative care
for non-cancer related conditions (Oishi & Murtagh, 2014). This is particularly the
case when palliative care can be delivered by both specialist and non-specialist
professionals in various settings, including hospitals and community settings. A
person may receive care through multiple different teams and in multiple settings
throughout the trajectory of their palliative care (Ho, Jameson & Pavlish, 2016).
Where many services and professionals involved in providing care, there is a risk of
poor communication and care coordination and conflicting care plan
recommendations (Ho, Jameson & Pavlish, 2016). Interprofessional collaboration,
when done well, reduces errors, improves patient care, enables better continuity of
care across settings and improves clinician work satisfaction (Ho, Jameson & Pavlish,
2016).
Palliative rehabilitation and the allied health professions
The allied health professions are an essential component of the
multidisciplinary palliative care workforce. They can be either specialist palliative
care providers, or primary generalist providers, operating in a range of service models
(Palliative Care Australia, 2012). Allied health interventions operate within a
“palliative rehabilitation” framework; described as ‘an educational, problem-solving
process that focuses on activity limitations and aims to optimise social participation
and wellbeing, and so reduce stress on the carer and/or family within the context of a
life-limiting progressive illness’ (Payne, 2015, p. 106). Dietz’s (1969) classification
of rehabilitation for people with cancer into four specific categories applies equally to
any kind of life-limiting illness, and acknowledges the complexity of the broader
concept and purpose of palliative rehabilitation. The categories are:
• Preventative: maintaining a current level of function;
• Restorative: to return to a previous level of function;
9
• Supportive: maximising function in the context of permanent
impairment, and
• Palliative: the reduction of dependence in mobility and self-care
activities together with provision of comfort and emotional support
(Dietz, 1969)
All four types of intervention are relevant throughout the entire course of a life-
limiting illness (Okamura, 2011), however supportive and palliative rehabilitation
strategies are likely to be applied for the most common symptomatic issues of pain,
decreased endurance, orthostatic intolerance and skin breakdown (Javier &
Montagnini, 2011).
Life-limiting and chronic diseases bring with them often under-acknowledged
disability and functional impairment (Loughran, Rice, & Robinson, 2017; Philip,
2015). Palliative rehabilitation can offer a range of benefits for people experiencing
conditions such as: advanced cancer, cardiac conditions, neuromuscular conditions,
chronic respiratory diseases, HIV and dementia (Kumar & Jim, 2010; Okamura,
2011; Wittry, Lam, & McNalley, 2018). The literature reports most extensively on
physiotherapy and exercise-based interventions, along with the contribution of
occupational therapy interventions for activities of daily living. Physiotherapy has a
clear body of outcome based research (Kumar & Jim, 2010) and Occupational
Therapy to a lesser degree (Eva & Morgan, 2018; Hammill, Bye, & Cook, 2014,
2017). Research has demonstrated an association between palliative rehabilitation and
improvements in functional mobility, fatigue, dyspnoea, pain, sleep, quality of life
and survival (Javier & Montagnini, 2011; Wittry et al., 2018). Payne (2015) also
advocates for inclusion of nutrition intervention as part of palliative rehabilitation for
cancer cachexia, which combined with exercise-based intervention can achieve both
psychosocial and physical benefits (Payne, McIlfatrick, Larkin, Dunwoody, &
Gracey, 2018).
Speech-language pathology in palliative and end-of-life (EOL) care
Speech-language pathologists (SLPs) “study, diagnose and treat
communication disorders, including difficulties with speaking, listening,
10
understanding language, reading, writing, social skills, stuttering and using voice.
They work with people who have difficulty communicating because of developmental
delays, stroke, brain injuries, learning disability, intellectual disability, cerebral palsy,
dementia and hearing loss, as well as other problems that can affect speech and
language. People who experience difficulties swallowing food and drink safely can
also be helped by a [SLP]” (Speech Pathology Australia, 2015, p. 2). Communication
and swallowing impairments are common in a range of life-limiting illnesses
(Bogaardt et al., 2015; Pollens, 2004; Roe, Leslie, & Drinnan, 2007; Salt &
Robertson, 1998). Consequently, SLPs have become a part of multidisciplinary
palliative care and palliative rehabilitation service delivery in response to demand and
opportunity (O'Reilly & Walshe, 2015) through flexible and creative ways of working
(Hawksley, Ludlow, Buttimer, & Bloch, 2017). Palliative dysphagia care includes
assessment of impairment, strategies to minimise the risk of aspiration, optimising
nutrition and hydration, maximising the enjoyment of oral intake and minimising any
associated discomfort and stress (Cohen, Elackattu, Noordzij, Walsh, & Langmore,
2009; Eckman & Roe, 2005; Pollens, 2004; Pollens, 2012). SLPs are also likely to
have a role in oral care and oral stimulation for enjoyment, however this has not yet
been explored in the literature. Palliative communication assessment and intervention
provides information about a person’s communicative strengths and weaknesses,
communication therapy, alternative and augmentative communication systems and
education for communication partners on appropriate communication strategies
(Cohen et al., 2009; Frost, 2001; Javier & Montagnini, 2011; Okamura, 2011; Pollens,
2004; Pollens, 2012). SLPs also have a potential role in advance care planning. They
can give information about potential changes to eating, drinking and communication
likely to occur with the progression of a life-limiting disease, provide information
about capacity and supporting people with communication impairments to express
their wishes to support advance care planning and EOL decision making (Groher &
Groher, 2012; Lambert, 2012).
A diverse role for SLPs in palliative and EOL care is identified by descriptive
and opinion-based literature, but an empirical research base reflecting this work is
only just emerging (Chahda, Mathisen, & Carey, 2017; Kelly et al., 2016; Krikheli,
Mathisen, & Carey, 2017). There was no research-based evidence located when a
literature review was completed at the beginning of this research project (Chapter 2).
11
Since then, three studies relating specifically to the role of SLPs in palliative care
have emerged, and a fourth is in progress. O’Reilly and Walshe (2015) surveyed 322
practicing SLPs in the Republic of Ireland, the UK, the USA, Canada, Australia and
New Zealand. The participants confirmed that they perceive they have a role in
palliative care, but it is restricted by limited multidisciplinary recognition, resource
restrictions and the need for additional research in the area. Hawksley et al. (2017)
conducted a qualitative study of the attitudes and beliefs regarding communication
disorders in palliative care held by 12 SLPs in greater London and the south-east UK.
The authors also identified the challenges for SLPs, including role uncertainty, the
flexible skill set required, the emotional challenges associated with grief and loss,
performance targets that are inconsistent with the requirements of palliative work and
the absence of clearly defined role guidelines. Pascoe, Breen and Cocks (2018)
surveyed 143 practicing Australian-trained SLPs regarding preparation for working in
palliative care. They reported briefly on the SLPs’ perception of their role in palliative
care, however the focus of this study was the preparation of SLPs to work in palliative
care. They reported that inclusion of palliative care in university training results in
better preparation for working in palliative care, but that most participants did not
receive such training. A palliative curriculum for undergraduate SLPs was proposed,
that included an introduction to palliative care and end-of-life, ethics/legal issues,
counselling, service delivery and real-life learning experiences. Krikheli et al. (2018)
have recently published a research methodology for a Delphi study into paediatric
palliative SLP that is currently in progress.
The three existing studies have complementary findings. The authors reported
that the role of SLPs in palliative and EOL care is still not well defined, not always
known by other professions, and sometimes not well understood by SLPs themselves
(Hawksley et al., 2017; O'Reilly & Walshe, 2015). The outcome of this situation can
be a self-sustaining cycle of role uncertainty, untimely referrals, limited impacts on
patient outcomes, service under-utilisation and minimal further development of
palliative SLP services (Hawksley et al., 2017). Hence, services for people requiring
palliative or EOL care generally remain under-resourced and under-developed
(O'Reilly & Walshe, 2015). Many SLPs perceive that they can bring value to
comprehensive multidisciplinary palliative and EOL care (Hawksley et al., 2017;
O'Reilly & Walshe, 2015; Pascoe, Breen, & Cocks, 2018), and the importance of
12
practice guidelines as a basis for education, research, outcome measurement and
service development has been highlighted (Chahda et al., 2017; Collis & Bloch, 2012;
Hawksley et al., 2017).
There are few official resources to guide SLPs in palliative and EOL care.
Professional SLP associations have not yet published formal professional guidelines,
(Krikheli et al., 2017). None of the existing research studies provide sufficient
definition of the SLP role to develop formal practice guidelines for working in
palliative and EOL care (Hawksley et al., 2017; O'Reilly & Walshe, 2015; Pascoe et
al., 2018). This is particularly necessary with respect to palliative dysphagia
management, where a range of ethical and medico-legal challenges exist. The
legislation relating to palliative care differs between Australian States and Territories,
and internationally (Lombard, 2018), meaning that SLPs must be particularly aware
of the specific legal framework within their jurisdiction (Kelly, Cumming, Kenny,
Smith-Merry, & Bogaardt, 2018; Smith, Muller, & Bradd, 2011). Pascoe, Breen and
Cocks (2018) identified the need for specific training on ethics and legal issues as part
of SLP university courses. An understanding of the legal and ethical framework of
palliative care affords professionals more certainty in a clinical area where there is so
much uncertainty, and allows them to focus more effectively on providing person
centred care (White, Wilmott & Ashby, 2011). Clearly defining a professional role
and accepted practice is also an important for distinguishing appropriate duty of care
versus negligent or inappropriate practice (Bryden & Storey, 2011). Hawksley et al.
(2017) recognised the need for specific research to “define the [SLP] role and support
other healthcare professionals to identify when and how [SLP] input is required” (p.
544). A publication released in 2018 by the Allied Health Professions (AHP) group in
Northern Ireland is the first general guideline that defines the SLP role in palliative
care, along with that of other allied health disciplines (Public Health Agency, 2018).
It is, however, based on the existing limited body of evidence regarding SLP work in
palliative and EOL. Further research is required to strengthen this evidence base to
guide SLP practice and promote awareness of the SLP role amongst health care
consumers and multidisciplinary colleagues.
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Aims of this project
To address the gaps surrounding the SLP role in palliative care, the aims of
this thesis are:
1. To critically appraise the literature describing the SLP role in palliative care.
2. To describe the medico-legal and ethical aspects of palliative dysphagia
management to increase SLPs’ awareness of a range of important issues.
3. To identify and describe current SLP services. More specifically it will
identify the nature of SLP palliative intervention across palliative phases and
within caseloads, clinical settings and service delivery models in which SLPs
provide palliative care.
4. To determine how SLPs’ perceived best quality service compares with current
practices.
5. To identify barriers to providing optimal care, and what SLPs recommend to
facilitate improvement in clinical practice and palliative care.
6. To define key expectations of the role and agreed practice of SLPs in
palliative and EOL care, from the perspective of practicing SLPs.
14
CHAPTER 2
Literature Review
This chapter contains the review titled “The role of speech-language pathologists in palliative care: Where are we now? A review of the literature.” Published in Progress in Palliative Care (2016; 24(6), 315-323). DOI 10.1080/09699260.2016.1141745.
15
CHAPTER 2: LITERATURE REVIEW
Introduction and context
The literature review included in Chapter 2 addresses the second research aim;
to critically appraise the literature describing the SLP role in palliative care. It takes
the form of a paper submitted to Progress in Palliative Care in 2015 and published in
2016. At the time of submission, there were no published empirical studies
investigating the role of SLPs in palliative care. Promisingly, several authors have
published in this area since the time the manuscript was submitted. Their findings
were discussed in detail in Chapter 1, however a brief summary is also included here.
O’Reilly and Walshe (2015) were the first to publish their investigation of the
experiences of practicing SLPs in the Republic of Ireland, the UK, the USA, Canada,
Australia and New Zealand. Chahda, Mathisen, and Carey (2017) undertook a
scoping review of the role of SLPs in adult palliative care and Krikheli, Mathisen and
Carey (2017) completed a similar scoping review of the role of SLPs in paediatric
palliative care. Krikheli, Carey, Mathisen, Erickson, & Carey-Sargeant (2018)
described their methdology for a Delphi study currently in progress to establish the
role of SLPs specifically in paediatric palliative care. Hawksley et al. (2017) reported
on their qualitative study of the attitudes and beliefs regarding communication
disorders in palliative care held by 12 SLPs in greater London and the south-east UK.
Pascoe, Breen, & Cocks (2015) published their literature review on the preparation of
SLPs to work in palliative care, followed by the results of their survey of 143
practicing Australian-trained SLPs regarding their experiences of preparation for
working in palliative care (Pascoe, Breen & Cocks, 2018). The recent increase in
research activity in palliative SLP care has begun to fill a significant gap in the
evidence base, and reflects the relevance of the study reported on in this thesis.
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CHAPTER 3
Getting Comfortable with “Comfort Feeding”: An Exploration of Legal and Ethical Aspects of the Australian Speech-Language Pathologist’s
Role in Palliative Dysphagia Care
This chapter contains the narrative review titled “Getting comfortable with ‘comfort feeding’: An exploration of legal and ethical aspects of the Australian speech-language pathologist’s role in palliative dysphagia care.” Published in the International Journal of Speech-Language Pathology. (2018; 20(3), 1754-9515) DOI 10.1080/17549507.2018.1448895.
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CHAPTER 3: MEDICOLEGAL AND ETHICAL ASPECTS OF PALLIATIVE
DYSPHAGIA CARE
Introduction and context
There are unique complexities and challenges that arise when working outside
of a curative model, especially in the area of dysphagia management. If the risk of
aspiration of food and fluids cannot be eliminated, the options available for nutrition
and hydration may hasten a person’s decline. While SLPs follow the Speech
Pathology Australia Code of Ethics (Speech Pathology Australia, 2010), they can
struggle with how to exercise appropriate duty of care, if clinical interventions that
improve a person’s quality of life could cause further decline in their health (Roe &
Leslie, 2010). In response to uncertainty and perceived risk, some SLPs may choose
to withdraw from a person’s care; others may acknowledge the moral discomfort and
continue to work in a patient centred manner (Sharp & Bryant, 2003). SLPs have also
been involved in civil legal action where palliative management of nutrition and
hydration with recommendations that responded to a person’s level of function and
wellbeing was incorrectly interpreted as negligence (Williams DCJ, 2013). Clearly
defining a professional role and accepted practice is also an important for
distinguishing appropriate duty of care from negligent or inappropriate practice
(Bryden & Storey, 2011). As identified in Chapter 2, the lack of professional
guidelines for SLPs relating to palliative care can amplify SLPs concerns about
medico-legal and ethical issues in palliative dysphagia management. It is in this
context that SLPs benefit from a better understanding of the legal and ethical
framework around their intervention, in order to maintain a patient-centred approach
to care.
The legal framework of palliative care is derived from a mixture of legislation
and common law established by judgements made in courts of law, applicable to all
health professionals (Kerridge, Lowe, & Stewart, 2013). It is essential for
demarcating the boundaries of curative versus palliative care, to define appropriate
end-of-life care, and to distinguish end-of-life care from euthanasia (Lombard, 2018).
27
Perspectives on death and dying are very individualised and can both help and hinder
professionals’ capacity to provide palliative and EOL care (Ho, Jameson & Pavlish,
2016). Legislation relating to palliative care differs between Australian States and
Territories, and internationally, meaning that health professionals must be aware of
that which operates in their particular jurisdiction (Lombard, 2018). Professional
ethics differ from laws in that they offer a set of aspirational standards, values,
principles and duties, underpinned by principles of biomedical ethics (Beauchamp &
Childress, 2013; Kummer & Turner, 2011). The Speech Pathology Australia Code of
Ethics (Speech Pathology Australia, 2010) defines the specific ethical framework for
SLPs.
Chapter 3 addresses the second aim of this thesis; to describe the medico-legal
and ethical aspects of palliative dysphagia management to increase SLPs’ awareness
of a range of important issues. Key issues are presented in a paper published in the
International Journal of Speech-Language Pathology. A narrative review approach
was selected in order to capture a wide range of diverse sources, as many exist outside
medical and scientific literature; including legislation, legal decisions, books and legal
discussion literature. An awareness of important medico-legal and ethical issues, and
when to seek guidance will help address barriers to patient centred practice that can
result from anxiety and uncertainty about medico-legal and ethical factors. SLPs can
then focus on the delivery of patient-centred palliative care (White, Willmott, &
Ashby, 2011). Clarification of the medico-legal and ethical framework also helps to
define the responsibilities of the SLPs in palliative and EOL care.
Several legal concepts were applied specifically to palliative dysphagia
management; the status of nutrition and hydration as a medical treatment, legal
capacity, informed consent and reasonable care. As discussed in the article, specific
legal decisions have identified that nutrition and hydration can be considered
“medical treatment” and therefore subject to any legislation or legal precent relating
to the administration or refusal of medical treatment (Ashby & Mendelson, 2004;
Curnow, 2014; Freckelton, 2011). Diet and fluid modification for dysphagia
management as “medical treatment” has not yet been tested in court, but it is likely
that they may also be considered a medical treatment. There must be fully informed
consent by the person for a medical treatment to be administered, in accordance with
28
autonomy and self-determination. Fully informed consent may be associated with the
signature of written documents, but a range of other conditions must be satisfied for
consent to be fully informed. It is illegal to treat a person without their consent, except
in an emergency (Curnow, 2014; Freckelton, 2011; Stewart, Kerridge & Parker,
2008). There is no legal obligation for a person to take medication, nutrition or
hydration, even if refusal results in death. The concept of “voluntary palliative
starvation” legally protects a capable person’s right to refuse food and fluids, and
allows for appropriate palliative care to be legally administered to manage the
symptoms in this scenario (White, Wilmott & Savalescu, 2014). In the case of
Brightwater Care Group (Inc) v Rossiter (2009) 40 WAR 84, a residential aged care
facility was not liable when a resident refused artificial nutrition and hydration for the
purpose of ending their life, and that the facility was acting in accordance with the
law in providing palliative care to the resident (Ashby & Mendelson, 2004; Curnow,
2014; Freckelton, 2011). Doctors are also legally permitted to withdraw medical
treatment if it is considered futile (Freckleton, 2011).
A person without legal decision-making capacity can still have their autonomy
observed through and advance directive/refusal of treatment or a substitute decision
maker. Although the law regarding advance care directives and guardianship differs
between States and Territories, the judgment in Hunter and New England Area Health
Service V A (2009) 74 NSWLR confirmed that a clear and unambiguous advance care
directive made by a capable adult in any State or Territory must be observed.
The autonomy of a capable individual to make an informed decision about
consent to or refusal of treatment takes precedence; the interests of others, including
health professionals are not considered relevant (Wilmott, White, Smith & Wilkinson,
2014). This gives a different perspective on the idea of someone being “non-
compliant” with treatment. Rather, the law supports a person’s right to choose
whether to take on recommendations made by a treating professional; they cannot be
forced to do so. This can be challenging for some professionals, particularly in
residential care environments. Conversely, a person who consents to or declines
treatment because they do not fully understand the scenario suggests that the
conditions of informed consent/refusal have not been met. The health professional is
responsible for making sure the person is fully informed. For SLPs, this may mean
29
that additional assessments (including objective swallowing assessments) may be
indicated, or that additional support for complex communication needs facilitate
understanding and the ability to express consent/refusal (Stewart, Kerridge & Parker,
2008).
Ethical SLP practice is underpinned by the Speech Pathology Australia Code
of Ethics (Speech Pathology Australia, 2010) and associated position pagers and
clinical guidelines. Appropriately reasoning through situations where there are ethical
conflicts require that SLPs acquire insights and reasoning skills, including awareness,
willingness to consider and understand a differing perspective from one’s own,
holding one’s own beliefs to a high standard of proof, the ability to interpret the Code
of Ethics in complex scenarios, independent problem-solving skills and the insight to
seek assistance in problem-solving where required. Specific ethical principles assist in
clinical decision-making, such as beneficence/non-maleficence and autonomy
(McIlwraith & Madden, 2010). Newer ethical approaches, such as ethics of care and
narrative ethics, are very well suited to ethical decision-making in palliative care, as
they consider an individual’s past experiences and expectations for the future.
The article in this chapter proposes a decision-making model that blends
consideration of both legal and ethical concepts. Recommendations were made for
SLPs’ clinical documentation to ensure all these concepts are addressed as part of
clinical care. Given the importance of “accepted practice” for defining reasonable
care, further research that defines SLP practice in palliative and EOL care is essential
not just from a clinical perspective, but from a legal one as well. Research
collaboration with legal professionals will be of particular benefit in this area. Areas
of particular interest may include: the specific legal status of diet and fluid
modification, the relevance of objective swallowing assessments for informed
decision-making, facilitation of informed decision making for people with complex
communication needs, and how SLPs respond to their patients making informed
decisions to decline diet and fluid modification.
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CHAPTER 4
eDelphi Study Methodology
40
CHAPTER 4: eDELPHI STUDY METHODOLOGY
Introduction
The overall goals of this research program were to identify and describe
current palliative and EOL SLP services, determine barriers and facilitators of optimal
patient care, and define key expectations of the role and practice of SLPs in palliative
and EOL care, from the perspective of practicing SLPs. A Delphi consensus
methodology, based on electronic questionnaires was considered an effective strategy
for achieving these aims. The iterative nature of the Delphi process would allow
information to be collected from a range of SLPs, the outcome of which would be a
set of statements that would specifically define the role and practice of SLPs in
palliative and EOL care. This chapter describes the research methodology used in this
study; the findings of which are reported in chapters 5, 6 and 7. This program of
research was a collaborative multisite project within the South Western Sydney Local
Health District (SWSLHD) Speech Pathology Palliative Care Working Party
(PCWP). This group consisted of five senior SLPs in SWSLHD with either a
specialist role or specific interest in palliative and EOL care. The author of this thesis
is the chair and leader of the PCWP, and led this research project under the guidance
of the University of Sydney academic supervisors.
Research design
To achieve this study’s goals, the researchers sought feedback from as many
practicing SLPs as possible; unrestricted by location, work context and contact with
the researchers. A two round eDelphi exercise was selected for this purpose, which is
outlined in Figure 1.
The Delphi technique was developed in the 1960s by the RAND Corporation
and is an industry standard for solving a complex problem or achieving a consensus
on a specific subject by a group of experts (Linstone & Turoff, 1975). Its use in a
range of clinical contexts has been documented in the healthcare literature; from
41
developing guidelines for emergency department antidote stocks (Dart et al., 2000) to
tracheostomy care (Mitchell et al., 2012). The Delphi method allows recruitment of a
larger group of participants than other methods that require face-to-face contact
(Hutchings, Raine, Sanderson, & Black, 2006). Participants are less prone to being
influenced by the investigator, or by other people, and for this reason it can be more
reliable than, for example, the nominal group technique (Hutchings et al., 2006; Nair,
Aggarwal, & Khanna, 2011; Wainwright, Gallagher, Tompsett, & Atkins, 2010). An
eDelphi approach, where some or all of the process occurs via Internet-based tools, is
gaining increasing popularity as a convenient, timesaving and cost efficient way of
conducting a Delphi process (Donohoe, Stellefson, & Tennant, 2012).
The Delphi technique has been applied in diverse SLP research including:
development of aphasia research core outcomes sets (Wallace, Worrall, Rose, & Le
Dorze, 2016), identification of key aphasia treatment outcomes (Wallace, Worrall,
Rose, & Le Dorze, 2017), development and validation of aphasia rehabilitation best
practice statements (Power et al., 2015), development of a model for achieving
dysphagia competency (Guthrie, Lancaster, & Stansfield, 2017), development and
validation of an infant clinical feeding assessment scale (Viviers, Kritzinger, &
Vinck, 2016), establishment of common clinical terminology for reporting on
paediatric videofluoroscopic swallowing studies (St Pierre et al., 2012), atypical
speech and language development (Visser-Bochane et al., 2017), a stuttering
programme (Berquez, Cook, Millard & Jarvis, 2011) and definition of the criteria
used to identify and classify language impairments in children (Bishop, Snowling,
Thompson, Greenhalgh, & CATALISE Consortium, 2016; Bishop, Snowling,
Thompson, Greenhalgh, & CATALISE -2 Consortium, 2017). There is a Delphi study
currently in progress to establish the role of SLPs specifically in paediatric palliative
care which will use a combination of in-depth interviews and questionnaires to reach
consensus (Krikheli et al., 2018).
The Delphi technique has also been used to achieve role definition for other
health professionals. This includes, for example: the role of clinical nurse educators in
Japan (Yamada & Ota, 2012), the role of general practitioners in youth mental health
(Schaffalitzhy et al., 2015), the role and competencies of HIV case managers (Ko et
al., 2015), and roles and responsibilities within a multidisciplinary elder abuse
42
intervention model (Du Mont. Kosa, Macdonald, Elliot & Yaffe, 2015).
Figure 1. Research design
Round 1 Exploratory survey (n = 222)
Exploration of SLP activity in palliative care, service delivery / models of care, SLP’s knowledge and education on palliative care-related issues, SLP’s beliefs about optimal care, barriers to achieving optimal care,
recommendations for improving practice.
Round 1 analysis Descriptive and statistical analysis
Round 2 Consensus statements (n = 52)
Rating of agreement with 28 specific statements about the role of SLPs in palliative care
Round 2 recruitment 150 participants from round 1 that spend at least some time (an hour or more per week) providing palliative SLP
care AND gave consent to be recontacted AND provided a current email address.
Participants excluded from round 2 Do not provide palliative SLP care
OR Did not consent to further contact
OR Did not provide current email address
CONSENSUS REACHED Statements rated:
7-9 by at least 70% of respondents 1-3 by less than 15 % of respondents
Round 3 (Optional) Not required - consensus reached on all statements during round 2
Round 2 analysis Descriptive and statistical analysis
Pre-Delphi literature review
Questionnaire development and pilot testing
Round 1 recruitment Snowball sampling approach via email, Facebook groups, interest groups, professional groups
Development of statements through concept mapping
43
Pre-Delphi literature review
A structured review of published literature on the role of SLPs in palliative
care was conducted to inform the questions included in Round 1 of the Delphi study.
The published literature review is included in Chapter 2 of this thesis (Kelly et al.,
2016). The author of this thesis designed the review methodology. Both the author
and the principal supervisor confirmed the articles for inclusion. All members of the
PCWP contributed to the review of papers, as allocated by the author. The author
appraised all included articles in full and most articles we co-appraised with another
member of the PCWP for reliability.
Searches of the MEDLINE, EMBASE and CINAHL databases were conducted in
November 2013 and again February 2015 to locate new literature using the following
search filters: 'speech path*’ AND (‘palliative care’ OR ‘end of life’ OR ‘terminal
care’ OR ‘palliative rehabilitation’ OR ‘hospice’ OR ‘advance care’). Papers
published before 1995, those without abstracts available and abstracts of conference
presentations were excluded. Titles and abstracts were screened for relevance, and
any duplicates or obviously irrelevant articles were excluded. Additional papers were
located through manual searches. Due to the heterogeneity of the papers included,
they were categorised and appraised according to research design, relevance and
applicability (Boa, Duncan, Haraldsdottir, & Wyke, 2014).
Questionnaire development
At the time this study commenced, there were no published questionnaires that
would address the research objectives of this study. A questionnaire was developed
collaboratively by all members of the PCWP (led by the author) to explore the
manner and extent to which the role of SLPs described in the literature review was
reflected in the clinical practice of the participants, as well as their perspectives on
barriers, facilitators and suggestions for improving SLP practice in palliative care.
A web-based questionnaire was used in preference to a mail out survey as it
would allow cost-effective access to a greater number of potential participants across
a range of settings and caseloads (de Vaus, 2014; Donohoe et al., 2012). This
44
approach also aligned with the selected snowball sampling method. The web-based
platform chosen was Survey Monkey as it allowed creation of a user-friendly custom
questionnaire of unlimited length, accessed via a dedicated URL. It would be possible
to identify through this platform whether a participant completed the questionnaire
more than once from the same internet service provider address, allowing duplications
to be excluded if necessary (Survey Monkey, 2015). The research team also had
previous experience administering research questionnaires via Survey Monkey.
The key findings of the literature review informed the questions developed for
the Round 1 Delphi survey. The survey was designed to explore the following:
• Demographics of participants (e.g. place of employment, level of experience,
metro versus rural locations)
• SLP dedicated staffing to palliative care caseloads.
• Frequency with which SLPs work with patients receiving palliative care.
• SLPs’ formal education on palliative care-related issues.
• SLPs’ beliefs regarding models of care that should be offered to patients who
are palliative (e.g. assessment, rehabilitative therapy, strategy based
recommendations, AAC, education).
• Models of care currently offered.
• SLPs beliefs regarding service delivery types to patients who are palliative
(e.g. institutional, domiciliary).
• Service delivery types currently offered.
• Barriers to achieving models of care and service delivery types participants
believe should be offered to patients receiving palliative care.
• Other specific challenges SLPs encounter in working with a palliative care
caseload.
• SLPs’ recommendations for improving their practice with patients who are
palliative.
The questionnaire commenced with the participant information statement and
a question that indicated the participant’s consent for their responses to be included in
the research. If the respondent indicated that they did not consent, the survey
automatically closed. Participants who gave consent progressed through to the
45
remainder of the questions. The questionnaire consisted of 27 questions and was
divided into four sections: (i) demographics, (ii) service delivery to palliative patients,
(iii) knowledge and skill development, and (iv) issues and challenges. The majority of
the questionnaire consisted of closed questions with an associated open-ended
comment field. Closed questions allowed various measurement scales to be used,
including Likert scales, ranking scales and multiple-choice questions which permitted
comparison between responses, and with the published literature (de Vaus, 2014).
Open-ended comment fields followed most of the closed questions, which could be
analysed further if more than 50% of participants provided relevant comments. A
single open-ended question asked participants to offer their own suggestions for
improvement of the quality of service to people receiving palliative care. All but two
questions required an answer. Participants were requested to provide an email address
if they consented to participate in Round 2 and/or to be placed in a draw to win a $50
gift voucher as an incentive for completing the survey. The final question sought
specific consent for the researchers to contact participants for Round 2. Questions
were presented in the same order for all participants. A response to each question was
mandatory, but participants could exit the survey at any time. Survey questions are
included in Appendix 1.
The four palliative phases used in this study were simplified from the
Palliative Care Outcomes Collaboration (PCOC) (Palliative Care Outcomes
Collaboration, 2014). The “stable” phase is characterised by symptoms being
adequately controlled, and no psychosocial issues are apparent. For purpose of this
survey, the “unstable” and “deteriorating” phases were combined into a single
“deteriorating” phase to provide greater contrast between each category, as the
functional implications for SLP work are likely to be similar for both PCOC phases.
Thus, for this study, in the “deteriorating” phase symptoms and functional capacity
are declining and/or there are changes in the psychosocial situation that impact on the
plan of care. During the “terminal” phase, death is likely within days, and the
“bereavement” phase occurs when the person has died and bereavement support is
provided to family and carers.
A pilot version of the questionnaire was reviewed in September 2015 by a
practicing SLP and a SLP honours student who were not involved in this study. They
46
provided feedback on the clarity of wording, their interpretation of questions, length
of time taken for completion, typographical errors and the structure and function of
the web-based questionnaire. Their feedback resulted in minor amendments to the
wording of questions, and repairs to broken internal linkages within the web-based
instrument.
First round of Delphi (Round 1)
Data collection was via Survey Monkey (http://www.surveymonkey.com)
between October 2015 and January 2016. Round 1 participants were recruited by the
author via electronic snowball sampling. Snowball sampling is a nonprobability
sampling method for recruiting a population about which few details are known and
which may be difficult to locate by other methods (Abbot & McKinney, 2013). In this
approach, the researcher locates a person or people of interest and requests that they
recruit others who may meet eligibility criteria (Abbot & McKinney, 2013). As no
empirical studies of the population of SLPs working in palliative and EOL care had
been published at the time this study was being conceived, little was known of this
population. It was expected that SLPs doing this kind of work would be similar to the
Occupational Therapists studied by Hammill (2014), in being located in various
health care settings and providing palliative and EOL care as only part of a broader
caseload. The researchers also aimed to include international participants in the study.
Invitations to complete the questionnaire with the Survey Monkey link were
distributed via email, online interest groups, Facebook groups and publications of
professional and interest groups in the area. Email invitations included a copy of the
participant information statement and a link to the web-based questionnaire. Posts to
Facebook groups and publications of professional groups contained a short
explanation of the research aims and a link to the web-based questionnaire. All
participants were still able to view the participant information statement on the
Survey Monkey platform prior to consenting to participate in Round 1. Participants
were encouraged to continue to distribute the invitation amongst their colleagues. The
aim of this approach was to recruit participants that were as diverse as possible,
unrestricted by location. They were asked to respond if they were currently practicing
as SLPs. This sampling method may have introduced some bias in the location of
47
participants. Although the Facebook groups used for recruitment were international,
and the publications of professional groups were Australia-wide, email invitations
originated in Sydney, NSW. It is likely that this resulted in the majority of
participants coming from NSW, Australia.
Development of consensus statements and survey
Responses from Round 1 were synthesised with information extracted from
the literature review to develop statements of practice. The researchers used a
simplified concept mapping approach for this purpose. Concept mapping is a
structured inductive process that yields a conceptual framework for a particular topic
(Burke et al., 2005). Flexible use of concept maps can assist researchers in refining
subsequent data collection strategies (Wheeldon & Faubert, 2009). This approach was
considered to be particularly relevant for combining the results of the literature review
with the Round 1 results, which would inform the statements posed for the consensus
process in Round 2. Concept mapping has been integrated into the Delphi
methodology elsewhere for developing nomenclature, definitions and
recommendations for healthcare quality improvement implementation strategies
(Waltz et al., 2014).
Generation of consensus statements via concept mapping was achieved in four
main steps. Firstly, the members of the PCWP (led by the author) generated sentences
summarising specific Round 1 findings and assertions from papers examined in
Chapters 2 and 3. The sentences were sorted into related groups that made sense to
the researchers. Two statements were then made that summarised overall findings
from the Round 1 survey and the papers from the literature review respectively. This
grouped information was next assigned a thematic label. Finally, the information in
each thematic group was re-worded into a specific consensus statement that would be
presented to participants in Round 2. An overview of this process is depicted in
Figure 2, and a more detailed example is provided in Chapter 7. A total of 28
statements about the role and practice of SLPs in palliative care were generated.
Statements were thematically organised into six categories: 1. Service provision, 2.
Communication, 3. Swallowing 4. Care planning 5. Professional development and
48
support and 6. Quality framework. The content of these categories will be discussed
in detail in Chapter 7.
For the purpose of Delphi Round 2, statements were presented as a
questionnaire on the Survey Monkey platform (Appendix 4). The Round 2 survey
commenced with the participant information statement and a question that indicated
the participant’s consent for their responses to be included in the research. If the
respondent indicated that they did not consent, the survey automatically closed.
Participants who gave consent progressed through to the remainder of the questions.
The first 15 questions collected demographic information for participants, including
level of experience, location and the nature and extent of their work in palliative care.
The remainder of the survey consisted of the 28 statements for consensus. Participants
were asked to rank the strength of their agreement with each statement on a scale of
1-9, where 1 was the weakest level of agreement and 9 was the strongest level,
according to Williamson et al.’s (2012) methodology. The criteria for consensus
described by Williamson et al. (2012) were used and consensus was therefore reached
if a statement was rated 7-9 by at least 70% of participants and 1-3 by less than 15%
of participants (Williamson et al., 2012). Statements for which agreement was rated 7-
9 by 50-60% would be revised and carried forward to a third round, however this did
not become necessary as consensus was reached during Round 2. Questions were
presented in the same order for all participants. A response to each question was
mandatory, but participants could exit the survey at any time.
49
Figure 2. Concept mapping for consensus statement development
Second round of Delphi (Round 2)
Round 2 data collection occurred between November 2017 and January 2018
through Survey Monkey (http://www.surveymonkey.com). Round 2 participants were
recruited by the author from within the Round 1 group using a purposive sampling
approach (see criteria under “Eligibility” below). An email was sent to 150 eligible
participants with a request to participate in Round 2. The email included the
participant information statement and a link to the web-based questionnaire.
Eligibility
The researchers’ aim was to assemble a participant group of adequate size for
Round 2 that had experience working in palliative and EOL care. It was not possible
to calculate the necessary sample size due to the unknown number of SLPs providing
palliative and EOL care. The researchers therefore set a target of having at least 50
participants progress through to Round 2. This number was selected according to
Theme
Literature findings
Literature finding
Literature finding
Literature finding
Round 1 survey findings
Survey finding
Survey finding
Survey finding
Statement
50
Hammill’s (2014) methodology, where Occupational Therapists working in palliative
and EOL care were surveyed. As the study described in this thesis also surveyed an
allied health profession, similar response rates were expected. For this reason, and due
to the potential for loss of subjects between rounds, the eligibility criteria for Round 1
were deliberately broad to capture as many participants as possible. Potential
participants for Round 1 were eligible if they were currently practicing as a qualified
SLP. Participation criteria for Round 2 were then refined to people who:
1) Were currently practicing as a qualified SLP
2) Were engaged in a minimum of one hour per week providing palliative SLP
care
3) Gave consent to be recontacted
4) Provided a current email address
Response Rate
The overall response rate for Round 1 cannot be assessed, due to the nature of
recruitment. It is not possible to determine how many people received the invitation to
participate. A total of 233 participants consented to participate, and 222 participants
proceeded beyond the first question, giving a 95% response rate after consent. The 11
participants who did not proceed after consenting were excluded from any further
analysis. Ultimately, 79% (175/222) of participants completed the entire
questionnaire. Incomplete questionnaires were included in data analysis; the number
of participants included for each question is specified in the results.
A total of 150 participants from the Round 1 cohort of 222 (67.6%) met the
inclusion criteria for Round 2. Of the 150 participants invited to join Round 2, 56
participants (37.3%) responded, but four of these indicated that they did not meet the
minimum hours required for palliative work and were excluded from the analysis.
Thus, 52 (23.4%) participants from the original group progressed through the entire
eDelphi process.
Participant Demographics
51
Demographic information for participants in both rounds is shown in Table 2.
Table 2. Participant demographics Round 1 Round 2
Age Not collected Mean Range 36 25-59
Gender Not collected n = 52 % Female - - 51 98.1 Male - - 1 1.9 Geographical Location n = 222 % n = 52 % Australian States and Territories n = 188 84.6 n = 46 82.1
NSW 103 54.8 28 60.9 QLD 44 23.4 7 15.2 VIC 13 6.9 6 13.0 SA 9 4.8 3 6.5 NT 3 1.6 0 0 WA 7 3.7 1 2.2 ACT 5 2.7 1 2.2 TAS 4 2.1 0 0 International Countries n = 32 14.4 n = 6 11.5 New Zealand 21 65.6 2 33.3 Netherlands 4 12.5 1 16.7 Scotland 2 4.3 1 16.7 Singapore 1 2.2 1 16.7 Hong Kong 1 2.2 1 16.7 Malta 1 2.2 0 0 Canada 1 2.2 0 0 Unknown 1 2.2 0 0 Caseload Age Group n = 222 % n = 52 % Paediatrics 16 7.2 4 7.7 Adults 157 70.7 40 76.9 Both 49 22.1 8 15.4 Experience as SLP n = 222 % n = 52 % Less than 1 year 15 6.8 0 0 1-2 years 22 9.9 0 0 2-5 years 34 15.3 8 15.4 5-10 years 54 24.3 16 30.8 10+ years 97 43.7 28 53.8 Experience in Palliative Care Not collected n = 52 % Less than 1 year - - 0 0 1 year - - 1 1.9 2-5 years - - 19 36.5 5-10 years - - 16 30.8 10+ years - - 16 30.8 Dedicated to Palliative Caseload n = 218 % n = 52 % No 195 89.5 39 75
52
Yes 23 10.5 13 25 Hrs/week in Palliative Care n = 218 % n = 52 % None 17 7.8 0 0 1-3 hours 128 58.7 32 61.5 3-8 hours 41 18.8 9 17.3 1 day 15 6.9 6 11.5 2 days 10 4.6 2 3.8 3-4 days 5 2.3 3 5.8 Full time 2 0.9 0 0 Data analysis – Round 1
Round 1 data were downloaded into IBM SPSS Statistics (22.0) for the
purposes of quantitative analyses. The author of this thesis completed the analysis.
Differences in responses according to the level of experience of participants were
analysed using the Mann-Whitney test for data collected via rating scales, and Chi-
square for data collected via Likert scales. Participants were divided into two
experience-based groups; new SLPs were those who had worked in the profession for
less than two years and experienced SLPs were those who had worked for more than
two years. The differences between the current frequency of specific elements of SLP
practice and the frequency that participants perceived to be optimal were compared
using the Wilcoxon signed-rank test. Differences at the level of p ≤ .05 were
considered statistically significant.
Data analysis – Round 2
Round 2 data were downloaded into Microsoft Excel for quantitative analysis,
which was performed by the author. Qualitative analysis was not performed on the
open comments as only a small number of participants provided comments, however
comments were still considered for context.
Ethical considerations
Ethics committee approval
53
This study was approved by the South Western Sydney Local Health District
Human Research Ethics Committee (HREC reference LNR/15/LPOOL/8).
Voluntary participation, informed consent and the right to withdraw
Participation in this study was voluntary. An incentive was provided to
maximise the response rate (de Vaus, 2014). Participants were invited to leave a
contact email address if they wished to enter into a prize-draw for a single $50 gift
voucher. Comprehensive information about the study in the form of an electronic
participant information statement was provided at the beginning of each questionnaire
on Survey Monkey. Participants gave specific consent by answering the first question
“I consent to participate in this study” in the affirmative, after reading the participant
information on the first two pages of the questionnaire. If this question was answered
in the negative, the survey automatically closed. Participants were also able to exit the
survey at any time.
Anonymity and confidentiality
Anonymous participation was possible in Round 1 but not Round 2.
Participants in Round 1 could choose to participate anonymously by not leaving any
contact details. Participants were asked to leave an email address if they chose to
participate in Round 2 and/or to be placed in a draw to win the $50 gift voucher. To
maintain participant confidentiality and to prevent an individual’s responses being
identified during analysis, email addresses were stored separately from the response
data for both Round 1 and Round 2.
Data management
Data collected was stored securely. The Survey Monkey account used for data
collection is registered and maintained by a single investigator, and is password
protected. Once the surveys were closed, data was transferred to SPSS data files and
Microsoft Excel workbooks stored on a secure server and in locked offices. Data files
were viewed only by the PhD candidate, the PCWP, and the PhD supervisors.
54
The following three chapters will present the results of this study. Chapters 5
and 6 will provide detailed results from Round 1 and Chapter 7 will present the results
from Round 2 with the overall implications of this program of research.
55
CHAPTER 5
Characteristics and Activity of Speech-Language Pathologists in Palliative and End-of-
Life Care
56
CHAPTER 5: CHARACTERISTICS AND ACTIVITY OF SPEECH-
LANGUAGE PATHOLOGISTS IN PALLIATIVE AND END-OF-LIFE CARE Introduction
There is limited empirical research into the role of SLPs in palliative and EOL
care (Chahda et al., 2017; Kelly et al., 2016; Pascoe, Breen, & Cocks, 2015; Pollens,
2012). There is a growing body of recent descriptive literature that outlines the
support that SLPs can provide to people receiving palliative or EOL care (Chahda et
al., 2017; Eckman & Roe, 2005; Kelly et al., 2016; Krikheli et al., 2017; Pascoe et al.,
2015; Pollens, 2004; Pollens, 2012; Roe & Leslie, 2010; Roe et al., 2007; Toner &
Shadden, 2012). This literature consists of experienced clinicians describing their
work, and some formal literature reviews. According to these authors, SLPs not only
provide management of dysphagia and communication changes, but also can play a
broader role in multidisciplinary management and care planning. There are three
particular research studies that have emerged in the last several years through which
SLPs have provided some insight into their work in palliative care.
O’Reilly and Walshe (2015) published a brief description of the role of SLPs
in palliative care from their survey of 322 SLPs working with adult and paediatric
palliative care populations in the Republic of Ireland, United Kingdom, United States,
Canada, Australia and New Zealand. Their participants worked with people with
advanced dementia, cancer and progressive neurological settings. Half (51%) worked
in acute settings and one-fifth (18%) worked in community settings. They reported
that the SLP role includes assessment and management of swallowing and
communication difficulties, educating the person, their family and the
multidisciplinary team about those difficulties and participating in overall patient
care.
Hawksley et al. (2017) conducted a qualitative study with of the views,
attitudes and beliefs of 12 SLPs in Greater London and the south-east UK on
communication disorders in palliative care. Their participants worked in acute,
rehabilitation and community settings, but the distribution of participants across these
57
settings was not described in detail. The participants had between one and 13 years
SLP experience, and none worked exclusively in a hospice environment.
Pascoe et al. (2018) surveyed 157 Australian SLPs to determine what is
needed to prepare SLPs to work in adult palliative care. Their participants were
consistently more experienced SLPs, with five or more years of experience. They
were employed in various clinical settings, including acute, outpatient, aged care and
palliative care units, but again the distribution was not described in detail. Almost
one-third of participants saw between two and five palliative care patients per week,
and 35% saw less than one per week. The average time spent with palliative patients
varied between 0.5 to 38 hours per week. The SLP role in palliative care was
summarised by this paper as including dysphagia and communication management,
education and liaison with the multidisciplinary team, education and support for
patients and family members on disease progression and dying, organising services
and referrals to support groups, and liaison about advance care planning and case
management.
As the ultimate goal of this thesis was to describe agreed practice for SLPs in
palliative care, it was first necessary to establish the reality of SLP work in palliative
care. The descriptive and opinion-based literature on the role of SLPs in palliative
care describes what may be possible, but it is not yet clear whether it reflects what
actually occurs in practice. Further research into the role of SLPs in palliative care is
necessary to extend upon the three research studies described here. The actual
activity of SLPs in palliative care was not the main focus of these studies and so they
presented this information in a summarised and introductory manner. Hawksley et al.
(2017) had a very small and geographically confined sample, and O’Reilly and
Walshe (2015) provided only simplistic analysis and reporting of their findings.
Hawksley et al. (2017) actually recommended extending the focus across a wider
geographical area and considering whether workplace setting and level of experience
may have an influence on SLPs views and beliefs. A more detailed investigation into
the characteristics of palliative SLP services and activities was therefore necessary.
Nonetheless, the three existing studies provide important information which, when
combined with the results of this study, allow for a better understanding of real-world
SLP practice in palliative and EOL care.
58
Aims
This chapter addresses the aim of exploring current SLP services, including
the patient characteristics, service settings and form and frequency of SLP
intervention. The following questions are posed:
1. In which contexts do SLP provide palliative intervention? (Including
caseloads, clinical conditions, clinical settings and service delivery models)
2. What is the frequency and form of SLP intervention across different palliative
phases?
3. What activities constitute clinical intervention for dysphagia and
communication? At what frequency are these clinical interventions
performed?
4. To what extent are SLPs involved in multidisciplinary care planning?
5. To what extent do SLPs assist patients with advance care planning?
Methodology
This chapter is based on a subset of data from Round 1 of the eDelphi study.
The methodology is described in detail in Chapter 4; aspects relevant for this chapter
are summarised here.
Responses were collected via an anonymous internet-based survey
questionnaire between October 2015 and January 2016. Participants were recruited
via electronic snowball sampling. Invitations were distributed via email, online
interest groups, Facebook groups, publications of SLP professional and interest
groups. A total of 222 SLPs responded. There was some attrition of participants
during survey completion; 47 participants exited at various points during the survey,
meaning that 175 completed the full survey. Incomplete surveys were still included in
the analysis. The number of participants for each question is identified when reporting
the results.
Data Analysis
59
Data obtained were downloaded into IBM SPSS Statistics (22.0) for analysis.
Descriptive statistics were used to analyse response data. Differences in responses
according to the level of experience of participants were analysed using the Mann-
Whitney test for data collected via rating scales, and Chi-square for categorical data.
Participants were placed into two experience-based groups for this analysis. New
SLPs were considered to be those with less than two years’ SLP employment and
experienced SLPs were considered to be those with more than two years’ SLP
employment. Due to the lower number of responses from less experienced SLPs,
setting this criterion at two years allowed for meaningful statistical analysis of the
responses. Any differences at the level of p ≤ .05 were considered statistically
significant and those with an effect size of medium or higher were considered
relevant.
Results
Participant demographics
Most (n = 207) participants were experienced SLPs, with almost half reporting
10 or more years of professional experience. Very few participants (n = 15) reported
less than one year of experience. Most participants worked with adults (70.7%, n =
157), in either a mixed inpatient/outpatient (43.7%, n = 97) or inpatient (39.2%, n =
87) caseload, in a metropolitan area (60.4%, n = 134), in a publically funded health
setting (83.3%, n = 185). A total of 190 participants (85.6%) worked in an Australian
state or territory, with two participants working across two states. Participants from
outside Australia worked in New Zealand, the Netherlands, Scotland, Singapore,
Hong Kong, Malta and Canada. Most participants (89.5%, n =195) were not
specifically allocated to a “palliative care” caseload and spent the equivalent of one
day per week or less working specifically with patients whose care is considered
palliative (92.2%, n = 205). Participants worked with people who have head and neck,
neurological or other cancers (85.1%, n = 189), progressive neurological conditions
such as Parkinson’s disease, motor neurone disease, multiple sclerosis or
Huntington’s disease (82.0%, n = 182), dementia (80.2%, n = 178), acquired
neurological injury such as stroke or traumatic brain injury (77.9%, n = 173),
60
advanced age incorporating multiple medical conditions (69.8%, n = 155), chronic
respiratory conditions (67.6%, n = 150), chronic renal failure (39.2%, n = 87) and
chronic liver failure (28.8%, n = 64). A smaller number of participants (15.8%, n =
35) reported that they worked with people who have other conditions, including:
disability, burns, chronic cardiac failure, genetic conditions and neonatal palliative
care.
The clinical caseloads of participants with different levels of experience were
largely similar, with only one noticeable exception. The most common patient groups
that the new SLPs worked with were people: with dementia (83.8%, n = 31),
experiencing medical issues associated with advanced age (81.1%, n = 30), and those
with Parkinson’s disease and stroke (78.4%, n = 29). The most common patient
groups that the experienced SLPs worked with were: people with dementia (78.9%, n
= 146), with brain tumours (78.9%, n = 146) and with Parkinson’s disease (76.2%, n
= 141).
Service provision: settings and services
SLP services were offered by participants in both inpatient and
outpatient/community settings. Inpatient SLP services were provided by participants
in acute (66.7%, n = 148), subacute/rehabilitation (40.5%, n = 90) and palliative care
unit/hospice (30.6%, n = 68) settings. Outpatient services were delivered through
centre-based appointments (42.3%, n = 94), home visits (38.3%, n = 85) and nursing
home visits (24.3%, n = 54) (Table 3).
SLP positions dedicated to palliative or EOL care were uncommon. Most
participants (78.9%, n = 172) worked in environments where there is not a dedicated
palliative care caseload, and only a small number (8.7%, n = 19) confirmed that their
service had specific SLP funding to provide a palliative care service (Table 3).
61
Table 3. Settings and services Public vs. Private n = 222 % Both 14 6.3% Public 185 83.3% Private 23 10.4% Inpatient Settings n = 222 % Acute 148 66.7% Subacute/ Rehabilitation 90 40.5% Palliative Care Unit/ Hospice 68 30.6% None 34 15.3% Outpatient Settings n = 222 % Centre based 94 42.3% Home visiting 85 38.3% Nursing home visiting 54 24.3% None 65 29.3% Location Type n = 222 % Metro 134 60.4% Regional 72 32.4% Rural 34 15.3% Dedicated Palliative SLP Position n = 218 % No 172 78.9% Yes 46 21.1% Funded Palliative SLP Position n = 218 % Yes 19 8.7% Unsure 26 11.9% No 173 79.4%
Most new SLPs worked in an inpatient setting, whereas experienced SLPs
were spread more evenly across inpatient and mixed settings (x2 = 10.32, p = 0.02,
effect size = 0.22). The distribution of participants from public and private settings
varied (x2 = 5.97, p = 0.05, effect size = 0.16). More experienced SLPs were more
likely to provide home visits (x2 = 5.22, p = 0.02, effect size = 0.15) and a greater
proportion of less experienced SLPs did not provide any outpatient services (x2 =
5.96, p = 0.01, effect size = 0.16).
Service provision: intensity of SLP intervention
Participants indicated that they saw patients most regularly and actively during
the deteriorating phase, where the patient’s status is declining (63.1%, n = 125), and
the stable (53.5%, n = 106) phase, where the clinical condition is controlled. When
not actively monitoring patients, participants reported that they mostly reviewed a
62
patient only if requested (42.4%, n = 84 for the stable phase and 34.9%, n = 69 for the
deteriorating phase). It was reported to be far more common during the terminal
phase, when death is imminent, to await a request for review from the patient, their
family or the multidisciplinary team (79.8%, n = 158) than to actively monitor the
patient (15.7%, n = 31). Participants indicated that SLP involvement with families in
the bereavement phase, after the patients’ death, was unusual, but 26.2% (n = 43) of
participants would see them if requested. Participants who selected “other” gave
descriptions that also indicated no involvement during the bereavement phase (Figure
3).
Figure 3. Intensity of service by palliative phase (n = 233)
Service provision: form of SLP intervention
SLP intervention in palliative care was reported to consist mostly of
assessment and education/strategies in the stable, deteriorating and terminal phases.
Participants were asked to indicate the predominant form of their intervention as a
combination of assessment, education/strategies, a shorter period of therapeutic
intervention (<4 sessions) and a longer period of therapeutic intervention (>4
sessions). These criteria were delineated based on the clinical practice of the
researchers, as there was no standard measure in published research that could be
n = 48
n = 106
n =3 n = 5
n = 69
n = 125
n = 0 n =4
n = 158
n = 31
n = 3 n = 6
n = 43
n = 0
n = 109
n =12
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Review onrequest
Seen regularly None Other
Perc
enta
ge o
f par
ticip
ants
Intensity type
Stable
Deteriorating
Terminal
Bereavement/postdeath support
63
used as a model. Education/strategies were reported most frequently across the stable
(85.4%, n = 169), deteriorating (90.3%, n = 177) and terminal (89.5%, n = 170)
phases. Assessment was frequently reported across the stable (86.9%) and
deteriorating (80.6%, n = 158) phases, but less frequently (64.2%, n = 122) for the
terminal phase. Therapeutic intervention of a short duration was reported by
approximately half (49.5%, n = 98) of the participants during the stable phase, by
27.6% (n = 54) during the deteriorating phase and 15.3% during the terminal phase. A
longer period of intervention was understandably reported less frequently but was
more common during the stable phase (39.9%, n =79) than the deteriorating (7.1%, n
= 14) and terminal (1.1%, n = 2) phases. Involvement of SLPs with families during
the bereavement phase was unusual. Almost all participants who selected “other” for
the bereavement phase indicated that they do not have contact with the person’s
family after death. Only 20.7% (n = 17) of participants reported that they provide
education/strategies and 1.1% (n = 2) reported that they provide a short period of
therapeutic intervention. (Figure 4).
Figure 4. Participants who provided specific forms of assessment and intervention by palliative phase (n = 198)
n = 172 n =169
n = 98
n = 79
n = 6
n = 158
n = 177
n = 54
n = 14n = 7
n =122
n = 170
n = 29
n = 2
n = 13
n = 0
n = 17
n = 2n = 0
n = 64
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Perc
enta
ge o
f par
ticip
ants
Assessement and intervention type
Stable
Deteriorating
Terminal
Bereavement
64
Dysphagia
SLP intervention in palliative and EOL care was oriented more towards
dysphagia management than communication for participants in this study. Dysphagia-
related activities that were “always” or “frequently” performed by a majority of
participants include: oral care recommendations (92.7%, n = 190), education on
dysphagia/risks of aspiration to patients and families (91.2%, n = 187), provision of
safe swallowing positioning recommendations (90.7%, n = 186), clinical (bedside)
swallowing assessments (90.2%, n = 185), diet texture modification recommendations
(84.9%, n = 174), fluid texture modification recommendations (80.5%, n = 165),
education on changes to eating and drinking and communication at the end of life
(81.0%, n = 166). Less frequently reported SLP activities included: instruction in
compensatory swallowing strategies (58.1%, n = 119), provision of oral
stimulation/tastes for comfort (47.8%, n = 98) and provision of information on how to
manage a choking episode (39.5%, n = 81). SLPs reported that they “sometimes”
provided instrumental (videofluroscopic and nasendoscopic) swallowing assessments
(35.6%, n = 73) and swallowing therapy (33.7%, n = 69). The nature of SLP
dysphagia intervention in palliative and EOL care is illustrated in Figure 5.
Dysphagia interventions were reported to be more diverse by experienced
SLPs than by new SLPs. Statistically significant differences according to the SLPs
level of experience were found for several activities, but the effect size was small.
These included: conducting instrumental swallowing assessments (Mann-Whitney
test, p < 0.0001, r =-0.30), providing swallowing therapy (Mann-Whitney test, p <
0.0001, r =-0.23), using compensatory swallowing strategies (Mann-Whitney test, p <
0.0001, r =-0.25), modifying diet textures (Mann-Whitney test, p < 0.0001, r =-0.26),
fluid thickening (Mann-Whitney test, p < 0.0001, r =-0.20), provision of oral
stimulation/tastes (Mann-Whitney test, p < 0.0001, r =-0.24), education on changes to
eating and drinking at the end of life (Mann-Whitney test, p < 0.0001, r =-0.20) and
provision of information on how to manage a choking episode (Mann-Whitney test, p
< 0.0001, r =-0.29).
Most participants did not perform palliative tracheostomy management. Two
thirds (65.4%, n = 134) reported that they did this “rarely” or “never, and 29.8% (n =
65
61) did it “sometimes”. There were again some differences according to the SLPs
level of experience. Experienced SLPs were statistically more likely to be involved in
tracheostomy management (Mann-Whitney test, p < 0.0001, r =-0.34).
66
Figure 5: Participants who performed dysphagia-related assessment and interventions (n = 205)
n = 10
n = 185
n = 13
n = 15
n = 119
n = 186
n =174
n =165
n = 190
n = 98
n = 187
n = 166
n = 81
n = 61
n = 18
n = 73
n = 69
n = 65
n = 18
n = 30
n =39
n = 12
n = 72
n = 17
n = 30
n = 52
n = 134
n = 2
n = 119
n = 121
n = 21
n =1
n =1
n =1
n = 3
n = 27
n = 1
n = 9
n = 72
0% 20% 40% 60% 80% 100%
Tracheostomy management
Clinical (bedside) swallowing assessment
Instrumental swallowing assessments (MBS/FEES)
Swallowing therapy
Compensatory swallowing strategies
Safe swallowing positioning recommendations
Diet modification recommendations
Fluid texture modification recommendations
Oral care recommendations
Oral stimulation/tastes for comfort
Education on dysphagia and risks of aspiration (to patient andfamily)
Education on changes to eating and drinking and communication atthe end of life
Information on how to manage a choking episode
Percantage of participants
Dys
phag
ia a
sses
smen
ts a
nd in
terv
entio
ns
Always orfrequently
Sometimes
Rarely ornever
67
Communication
Communication assessment and intervention was reported to be generally less
frequent than dysphagia intervention. Informal communication assessment was
“always” or “frequently” (approximately 75% of the time) performed by 42.4% (n =
87) of participants, and “sometimes” (approximately 50% of the time) performed by
39.0% (n = 80). The information gained that indicates how the patient’s
communication impairments influences their capacity for informed consent was
offered “always” or “frequently” by 32.2% (n = 66) of participants and “sometimes”
by 40.5% (n = 83). Communication partner education was “always” or “frequently”
performed by 51.7% (n = 106) of participants, and “sometimes” performed by another
34.6% (n = 71) of participants. Alternative and augmentative communication (AAC)
systems and communication strategies were “sometimes” provided by 48.8% (n =
100) of participants. Formal communication assessment and communication therapy
were reported to be unusual. A high percentage of participants reported that they
“rarely” (approximately 25% of the time, or less) or “never” administered formal
assessments (79.0%, n = 162) or conducted communication therapy (61.9%, n =127)
(Figure 6), however experienced SLPs reported conducting communication
intervention more frequently that new SLPs.
There were some differences in communication intervention according to the level of
SLP professional experience with medium effect size. Experienced SLPs were more
likely to conduct informal communication assessment (Mann-Whitney test, p <
0.0001, r =-0.38), formal communication assessment (Mann-Whitney test, p <
0.0001, r =-0.37) and provide AAC systems (Mann-Whitney test, p < 0.0001, r =-
0.33) compared with less experienced SLPs. Other activities for which there was a
statistically significant difference, but with a small effect size, included: provision of
communication therapy (Mann-Whitney test, p < 0.0001, r =-0.25), communication
partner education (Mann-Whitney test, p < 0.0001, r =-0.22) and provision of
information on communication changes at the end of life (Mann-Whitney test, p <
0.0001, r =-0.20).
68
Care Planning
Approximately two-thirds (67.3%, n = 138) of participants “always” or
“frequently” participated in patient, family and multidisciplinary team discussions
about the patient’s quality of life. Participants also provided information on how a
patients’ communication influences their capacity for informed decision making;
32.2% (n = 66) do this “always” or “frequently” and 40.5% (n = 83) did this
“sometimes”. Helping patients to develop/write advance care directives was
infrequent; 81.0% (n = 166) of participants “rarely” or “never” did this (Figure 10).
Level of experience had a statistically significant impact on how often participants
gave information on communicative capacity for decision making (Mann-Whitney
test, p < 0.0001, r =-0.23) and advance care planning (Mann-Whitney test, p <
0.0001, r =-0.29) and were reported more frequently by experienced than new SLPs.
69
Figure 6: Participants who performed communication-related assessment and interventions (n = 205)
n = 87
n = 10
n = 14
n = 106
n = 58
n = 166
n = 80
n = 33
n = 64
n = 71
n = 100
n = 30
n = 38
n = 162
n = 127
n = 28
n = 47
n =9
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Informal communication assessment
Formal communication assessment
Communication therapy
Communication partner education
AAC
Education on changes to eating and drinking andcommunication at the end of life
Percentage of participants
Com
mun
icat
ion
asse
ssm
ents
and
inte
rven
tions
Always or Frequently
Sometimes
Rarely or Never
70
Figure 7: Participants who performed care planning interventions (n = 205)
n = 138
n = 66
n = 11
n = 47
n = 83
n = 28
n = 20
n = 56
n = 166
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Participation in patient, family, multidisciplinary teamdiscussions/decisions about quality of life
Information on how the patient's communicationimpairments influence their capacity for informed decision
making
Helping patients to develop/write advanced care directives
Percentage of participants
Car
e pl
anni
ng a
ctiv
ities
Always or Frequently
Sometimes
Rarely or Never
71
Discussion
This study has provided information on the contexts in which SLPs provided
palliative intervention, the form and frequency of intervention across palliative
phases, clinical activities undertaken and the degree of involvement in
multidisciplinary care planning and in advance care planning. These findings add to
the nascent body of research on SLP practice in palliative and EOL care. They both
support previous findings and introduce new insights about the SLP role in this area.
A number of findings were consistent with those of O’Reilly and Walsh (2015),
Hawksley et al. (2017) and Pascoe et al. (2018), including confirming that SLPs
provided palliative intervention for people with a range of neurological, oncological
and age-related conditions, across inpatient, outpatient, acute, subacute and
community settings. Participants in this study reported providing palliative SLP care
for people with a broader range of conditions than O’Reilly and Walshe (2015) and
Hawksley et al. (2017), including chronic respiratory conditions and liver/renal
failure. Dedicated palliative SLP positions were reportedly rare, indicating that the
ability to provide palliative intervention is necessary across the breadth of SLP
services for adults. There was more of a focus on dysphagia than communication in
current palliative SLP practice. This study also showed that SLPs were most actively
engaged with patients receiving palliative and EOL care when their condition is stable
or deteriorating, with intervention consisting more of assessment and
education/strategies, than therapy, however short periods of therapy could be
provided when patients’ conditions are stable. SLPs tended to await requests for
intervention from patients, families or multidisciplinary team members when people
entered the terminal phase. SLP involvement in the bereavement phase (after death)
was rare. The types of intervention provided by experienced SLPs were more diverse
than new SLPs. Involvement in multidisciplinary care planning was fairly typical, but
assisting patients with advance care planning was reportedly rare.
The finding that most participants provide palliative SLP care within a range
of more generalist caseloads suggests a need for adequate pre-professional and
ongoing education in palliative and EOL care. Specialist palliative care positions were
unusual; the ability to do this work could therefore be required of any practicing SLP.
Appropriate educational opportunities will have an emotionally protective effect for
72
SLPs working with people who are dying, and help them better understand their
possible role in this area (Eckman & Roe, 2005; Roe & Leslie, 2010; Toner &
Shadden, 2012). Historically there has been a dearth of information regarding
palliative and EOL care education for SLPs, however this has begun to change with
the Palliative Care Curriculum for Undergraduates (PCC4U) program funded by the
Australian Government Department of Health and Ageing (Pascoe et al., 2015). This
has been implemented at the University of Newcastle, in New South Wales
(Mathisen, Yates, & Crofts, 2011), but the degree to which other institutions have
integrated this into their SLP curricula is unknown (Pascoe et al., 2015). A major
obstacle to the use of PCC4U in SLP training programmes at this time is that there are
very few SLP examples in the materials, and the illnesses experienced by the people
in the case studies (e.g. kidney disease, heart disease and metastatic colorectal, breast
and lung cancer) tend not to be associated with communication and/or swallowing
impairments. A case study of a person with motor neurone disease is included in the
“Optimising Function” module. It makes only brief mention of seeing a SLP and a
Dietitian when dysphagia appears, and there is no discussion of optimising
communication despite dysarthria being present (https://pcc4u.org). Expansion of the
materials to include consideration of communication and swallowing in greater detail
would enhance the applicability of PCC4U to SLPs. If the skillset required for
palliative working is not included in entry level training for SLPs, it is likely that that
new SLPs will experience lower levels of knowledge and confidence in this area. This
will be explored further in Chapter 6. Ultimately, the findings reported in this chapter
suggest that developing and embedding appropriate education in professional training
programmes is important to support SLPs to provide quality palliative and EOL SLP
care.
The higher frequency of dysphagia versus communication interventions poses
the question of whether current practice is meeting actual clinical need. Hawksley et
al. (2017) also noted this incongruity between dysphagia and communication
intervention. Dysphagia is indeed common at the end of life, with an incidence of up
to 79% in the last 72 hours (Bogaardt et al., 2015). Communication impairments are,
however, just as common in life-limiting illnesses, including amongst those that are
not usually associated with them (Salt & Robertson, 1998). For example, moderate or
severe difficulties communicating for people with end-stage Parkinson’s disease have
73
been reported by 78.7% of caregivers, and eating difficulties of a similar severity
were reported by 72.3% (Goy, Carter, & Ganzini, 2007). Similarly, 87% of stroke
patients have been found to have at least one communication-related impairment, and
55% have difficulty communicating their healthcare needs (O'Halloran, Worrall, &
Hickson, 2012). The communication impairments associated with intellectual
disability have also been recognised as a barrier to effective EOL care (Tuffrey-
Winjne & McEnhill, 2008) and difficulties communicating generally pose a challenge
for identifying and managing distress at the end of life (Regnard, Mathews, Gibson, &
Clarke, 2003). The current level of attention given to communication is unlikely to
represent true clinical need and may be a function of the largely acute environments
in which the participants worked. It is also interesting that communication assessment
and provision of AAC was offered less frequently by new SLPs. It has already been
reported that SLPs who work with people with acquired and progressive neurogenic
communication and swallowing conditions work primarily on swallowing (Code &
Heron, 2003). It is reasonable to assume that this would also be reflected in other
clinical areas. Facilitation of effective communication at the EOL can reduce distress
(Toner & Shadden, 2012), support patients to have control over their own care
planning and to have meaningful interactions with friends and family (Costello, 2009;
Toner & Shadden, 2012). This suggests that SLPs should be spending more time on
communication support in palliative and EOL care. Further investigation into how
this can be achieved with competing caseload priorities and clinical targets is
warranted, particularly considering the feasibility of transdisciplinary models of care
and allied health assistants in both dysphagia and communication management.
These findings also question whether SLPs could be more active in the realm
of advance care planning. Most of the participants in this study reported that they
have limited or no involvement in advance planning. There is emerging recognition
that allied health professionals can provide valuable support and information as part
of advance planning, both relating to their professional expertise and due to the nature
of the relationships that can be developed through extended periods of supportive care
(Lambert, 2012). SLPs are recognised for helping people make informed decisions
about oral or alternate nutrition and hydration, use of diet and fluid modifications,
communication changes and options and tracheostomy placement (Lambert, 2012).
Together with other allied health professionals, SLPs can also assist their patients to
74
access appropriate information about advance care planning, be alert to potential
risks, such as undue external influence by others and help ensure the manner in which
information about medical treatments and options are delivered in a form appropriate
for the person’s communication skills and health literacy (Lambert, 2012). It is
possible that this does actually occur in clinical SLP practice, but may not have been
recognised as advance planning by the participants. The questionnaire did not provide
an extensive explanation of advance care planning; therefore participants’ responses
were dependent on their own experience and knowledge of advance care planning.
Further qualitative research into SLPs’ understanding and participation in advance
care planning and advance care directives would be beneficial for understanding the
role they actually play in this area.
There are limitations to the findings reported in this chapter. They are based
on SLP reports that cannot be verified and are therefore subject to recall bias. Some
terminology used in the survey could also be subjectively interpreted, such as the
definition of “therapy” as direct/indirect intervention or both. Due to the lack of
previous research in this area, some parameters had to be very subjectively by the
researchers. The criteria for “new” versus “experienced” SLPs was set by the
researchers, based on their own work with “new” SLPs, and could potentially be
defined differently. For example, a study by Collis and Bloch (2012) took a similar
subjective approach when surveying SLPs on their practices for people with
progressive dysarthria and divided their participants into three groups based on years
of experience; up to five years, 6-10 years and over 10 years. The definitions of
palliative phases were based on, and simplified from that given by the PCOC, but did
not follow them exactly, limiting the extent to which this study can be compared with
others that use the PCOC definitions more strictly. Responses also represent a
predominantly eastern Australian perspective (particularly NSW), which limited the
ability to conduct a detailed analysis of differences between Australian States and
Territories, and those from other countries. It is difficult to make conclusions about
specific similarities and differences for the very small sample size from some States
and Territories, as well as international countries (between three and nine responses
per group). Even a single response that differed from another could strongly influence
the results of those States, Territories and countries. As discussed in Chapter 3, the
legislation relating to palliative carer does differ by jurisdiction, making further
75
investigation of related differences in SLP work an interesting area for future detailed
research. An alternative sampling methodology would need to be used to ensure the
sample is representative of all jurdisdictions. The experiences reported by participants
in this study were, however, quite consistent with those reported on by Hawksley et
al. (2017) and O’Reilly and Walsh (2015) are experienced by SLPs in various
international settings. Despite the limitations, the findings are useful for describing
the role of SLPs as it actually occurs in clinical practice.
Conclusion
SLPs provided palliative and EOL care for people with a variety of clinical
conditions, across a range of caseloads, through different service deliveries, which is
not limited to specialist palliative care positions. Such positions were indeed rare
amongst the organisations in which participants worked. SLPs were most actively
engaged with patients receiving palliative and EOL care when their condition was
stable or deteriorating. This tended to consist more of assessment and
education/strategies, than therapy, however short periods of therapy did occur when
patients’ conditions were stable. SLPs tended to await requests for intervention from
patients, families or multidisciplinary team members when people entered the
terminal phase. SLP involvement in the bereavement phase (after death) is rare.
Intervention was oriented more towards dysphagia than communication management,
particularly for newer SLPs. Despite reasonable involvement in multidisciplinary care
planning, there was limited involvement in advance planning directly with patients.
The findings described in this chapter have supported and expanded upon
previous studies that have explored SLPs work in palliative and EOL care for people
with a range of clinical conditions. The need for quality pre-professional and ongoing
education for SLPs in palliative and EOL work has been highlighted. Questions still
remain as to whether the current state of clinical service provision in this area is
reflective of actual clinical need, and the scope for change and improvement in SLP
work in palliative care. These questions will be further explored and addressed in
Chapter 6.
76
CHAPTER 6
Strategies for Improving Practice in Palliative and End-of-Life Care
77
CHAPTER 6: STRATEGIES FOR IMRPROVING PRACTICE IN
PALLIATIVE AND END-OF-LIFE CARE Introduction
Several authors have noted the substantial potential for improving SLP
practice in palliative and EOL care. The SLP role has evolved organically in response
to clinical need, but the scope and definition remains unclear (O'Reilly & Walshe,
2015). There is limited awareness of the potential value of SLP intervention for
people with life-limiting illnesses both within and outside the profession (Hawksley et
al., 2017). The absence of comprehensive professional practice guidelines has been
noted by several authors (Chahda et al., 2017; Hawksley et al., 2017; Krikheli et al.,
2017; Lambert, 2012; O'Reilly & Walshe, 2015), with concern expressed that these
are necessary for SLPs to be fully acknowledged as part of a multidisciplinary
palliative care team (Chahda et al., 2017). A recent publication released by the Allied
Health Professions (AHP) group in Northern Ireland is the first guideline that defines
the SLP role in palliative care, along with that of other allied health disciplines
(Public Health Agency, 2018). It is, however, based only on a limited amount of
descriptive literature and does not refer to key research studies published since 2015
(Hawksley et al., 2017; O'Reilly & Walshe, 2015; Pascoe et al., 2018).
SLP services seem to be engaged more frequently for dysphagia than
communication support (Hawksley et al., 2017). Intervention for progressive
dysarthria tends not to align with best practice and is more impairment-based than
holistic, particularly amongst less experienced SLPs (Collis & Bloch, 2012). The
different skill set and intervention approaches required for palliative and EOL care
has been acknowledged (Hawksley et al., 2017). New SLPs are typically not well
prepared to work within a palliative framework (Pascoe et al., 2015). Pascoe, Breen
and Cocks (2018) examined how SLPs were prepared for working in in palliative care
in their survey of 157 Australian SLPs. Only 27 % of participants had received
palliative care training as part of their university course, which was mostly discussion
in dysphagia, ethics and counselling lectures, with some infrequent observation or
discussion of palliative patients on clinical placement. Only 19 (13.3%) of their
78
participants reported being very or generally well prepared for working in palliative
care. Those SLPs whose university training covered palliative care reported being
significantly better prepared than those who did not. They proposed a palliative care
curriculum that covers basic information on palliative care, ethics/legal issues,
counselling, communication skills, dysphagia, service delivery, medical issues and
clinical experiences in palliative care (Pascoe et al., 2018).
Challenges described in the current palliative SLP literature reflect the
emergent nature of palliative work within the profession. Resourcing is noted as an
issue, with respect to both clinical SLP positions and sufficient time to dedicate to
palliative work (Hawksley et al., 2017; O'Reilly & Walshe, 2015). The limited
understanding of the value SLP can bring to palliative care results in late referrals,
which in turn can limit the degree to which SLPs can intervene to improve patients’
situations, perpetuating the cycle of role uncertainty (Hawksley et al., 2017). SLPs
can also be challenged by the burden of patient loss, an acute sense of responsibility
towards patients and the emotional conflict of working outside a curative model with
limited professional guidance (Hawksley et al., 2017). Hawksley et al. (2017)
suggested that these barriers could be addressed with clinical practice guidelines to
legitimise and define the palliative SLP role, support and training to help deal with
loss and further research into the area.
The results of this study, as described in Chapter 6 provided some insight into
the nature of SLP work in palliative care. What is still not clear from these results, or
the findings of other studies, is whether this reflects accepted or good quality practice.
If gaps do exist, it is important to understand the reasons in order to determine what
else can be done to improve SLP practice in palliative and EOL care.
Aims
This study proposes to add an understanding of the gap between current
practice, what SLPs believe to be good practice in the area of palliative care, and
strategies to close this gap. The aims addressed in this chapter are to determine:
79
1. What do SLPs believe to be best quality service to people whose care is
palliative?
2. How does this compare with current SLP practices?
3. What are the barriers to providing optimal care for people whose care is
palliative?
4. What will help facilitate improvements in clinical practice and patient care?
Methodology
This chapter is based on a subset of data from Round 1 of the eDelphi study.
The methodology is described in detail in Chapter 4; aspects relevant for this chapter
are summarised here.
Responses were collected via an anonymous internet-based survey
questionnaire between October 2015 and January 2016. Participants were recruited
via electronic snowball sampling. Invitations were distributed via email, online
interest groups, Facebook groups, publications of professional and interest groups in
the area. A total of 222 SLPs responded. There was some attrition of participants
during survey completion; 47 participants exited at various points during the survey,
meaning that 175 completed the full survey. Incomplete surveys were included in the
analysis. The number of responses for each question is identified when reporting the
results.
Data analysis
Data were downloaded from Survey Monkey into IBM SPSS Statistics (22.0)
for quantitative data analysis. Differences in responses according to the level of
experience of participants were analysed using the Mann-Whitney test for data
collected from rating scales. Participants were divided into two experience-based
groups; new SLPs were those who had worked in the profession for less than two
years and experienced SLPs were those who had worked for more than two years.
Due to the lower number of responses from less experienced SLPs, setting this
criterion allowed for meaningful statistical analysis of the responses. The differences
80
between the current frequency of specific elements of SLP practice and the frequency
that participants perceived to be optimal were compared using the Wilcoxon signed-
rank test. Differences at the level of p ≤ .05 were considered statistically significant.
Results
Demographics
Participants’ demographic characteristics are outlined in Table 4. Most
participants were experienced SLPs, with 43.7% (n = 97) having 10 or more years of
experience. Only 6.8% (n = 15) had less than one year of experience. Most worked
with adults, in either a mixed or inpatient caseload, in a metropolitan area, in a public
health setting. A total of 190 participants (85.6%) worked in an Australian state or
territory, with two participants working across two states. Participants from outside
Australia work in New Zealand, the Netherlands, Scotland, Singapore, Hong Kong,
Malta and Canada. Most participants were not specifically allocated to a “palliative
care” caseload and spent the equivalent of one day per week or less working
specifically with patients whose care is considered palliative. Participants worked
with people with a variety of clinical conditions, with oncological, neurological and
age-related conditions being most frequently reported.
Table 4. Participant demographics Geographical Location n = 222 % Australian States and Territories NSW 103 46.4% QLD 44 19.8% VIC 13 5.9% SA 9 4.1% NT 3 1.4% WA 7 3.2% ACT 5 2.3% TAS 4 1.8% NSW + VIC 1 0.5% NSW + QLD 1 0.5% International Countries New Zealand 21 9.5% Netherlands 4 1.8% Scotland 2 0.9% Singapore 1 0.5%
81
Hong Kong 1 0.5% Malta 1 0.5% Canada 1 0.5% Unknown 1 0.5% Location Type n = 222 % Metro 134 60.4% Regional 72 32.4% Rural 34 15.3% Caseload Age Group n = 222 % Paediatrics 16 7.2% Adults 157 70.7% Both 49 22.1% SLP Experience n = 222 % Less than 1 year 15 6.8% 1-2 years 22 9.9% 2-5 years 34 15.3% 5-10 years 54 24.3% 10+ years 97 43.7% Solely Palliative Caseload n = 218 % No 195 89.5% Yes 23 10.5% Time Spent Per Week n = 218 % None 17 7.8% 1-3 hours 128 58.7% 3-8 hours 41 18.8% 1 day 15 6.9% 2 days 10 4.6% 3-4 days 5 2.3% Full time 2 0.9%
Differences between current and ideal practice
There was a statistically significant difference between participants’ current
practice and what they believe to be ideal for all but one element of SLP intervention.
They were asked to rate the frequency of specific clinical activities for both of these
conditions on a 5-point scale to indicate “always”, “frequently”, “sometimes”,
“rarely” or “never”, where 1 = “always” and 5 = “never”. Table 5 and Figure 8 show
that participants perceived that ideal practice included more: informal communication
assessment, formal communication assessment, communication therapy,
communication partner education, AAC, tracheostomy management, instrumental
(videofluroscopic and nasendoscopic) swallowing assessments, swallowing therapy,
compensatory swallowing strategies, oral care recommendations, oral
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stimulation/tastes for comfort, education on dysphagia and risks of aspiration,
education on changes to eating and drinking at the end of life, provision of
information on how to manage a choking episode, participation of
discussions/decisions about quality of life, provision of information on how patients’
communication impairments influence their capacity for informed decision making
and helping patients to develop/write advance care directives. Participants
recommended less prescription of modified diet and fluid textures. There was no
difference in the frequency at which they reported clinical (bedside) swallowing
assessments should be performed.
Figure 8. Changing current to ideal practice
MORE•Informal communication assessment•Formal communication assessment•Communication therapy•Communication partner education•AAC•Tracheostomy management• Instrumental swallowing assessment•Swallowing therapy•Compensatory swallowing strategies•Oral care•Oral stimulation / tastes•Education on dysphagia and aspiration risk
•Education on changes to eating and drinking at the end of life
• Information on managing a choking episode
•Quality of life discussions /decisions• Information on communication capacity for decision making
•Helping people develop advance care directives
LESS
•Modified diet and fluid prescription
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Table 5. Differences between participants’ actual and ideal frequencies for specific clinical activitiesa
Current (mean, SD)
Current (n) Ideal (mean, SD)
Ideal (n) p Difference (Current vs.
Ideal) Informal communication assessment
2.6 (1.04) 205 1.91 (0.86) 185 <.0001* More
Formal communication assessment
4.03 (0.82) 205 3.40 (0.80) 183 <.0001* More
Communication therapy
3.75 (0.89) 205 3.07 (0.79) 182 <.0001* More
Communication partner education
2.52 (0.95) 205 1.66 (0.71) 185 <.0001* More
AAC
2.95 (0.90) 205 2.37 (0.79) 183 <.0001* More
Tracheostomy management
4.00 (0.95) 205 2.72 (0.88) 183 <.0001* More
Clinical (bedside) swallowing assessment
1.74 (0.65) 205 1.68 (0.68) 185 .191 No difference
Instrumental swallowing assessments (MBS/FEES)
3.78 (0.91) 205 3.30 (0.82) 185 <.0001* More
Swallowing therapy
3.69 (0.91) 205 3.10 (0.79) 181 <.0001* More
Compensatory swallowing strategies
2.43 (0.91) 205 2.19 (0.74) 185 <.0001* More
Safe swallowing positioning recommendations
1.64 (0.66) 205 1.50 (0.65) 185 <.0001* More
Diet texture modification recommendations
1.91 (0.64) 205 2.16 (0.77) 184 <.0001* Less
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Fluid texture modification recommendations
1.98 (0.66) 205 2.20 (0.78) 182 <.0001* Less
Oral care recommendations
1.55 (0.70) 205 1.39 (0.65) 184 <.0001* More
Oral stimulation/tastes for comfort
2.64 (0.95) 205 2.08 (0.87) 185 <.0001* More
Education on dysphagia and risks of aspiration (to patient and family)
1.54 (0.67) 205 1.40 (0.65) 184 .001* More
Education on changes to eating and drinking and communication at the end of life
1.89 (0.85) 205 1.39 (0.64) 185 <.0001* More
Information on how to manage a choking episode
2.93 (1.23) 205 1.97 (1.06) 184 <.0001* More
Participation in patient, family, multidisciplinary team discussions/decisions about quality of life
2.21 (0.97) 205 1.42 (0.63) 184 <.0001* More
Information on how the patient's communication impairments influence their capacity for informed decision making
2.94 (1.04) 205 1.69 (0.82) 185 <.0001* More
Helping patients to develop/write advance care directives
4.28 (0.94) 205 2.95 (1.10) 185 <.0001* More
aRatings of frequency on a 5-point scale to indicate “always”, “frequently”, “sometimes”, “rarely” or “never”, where 1 = “always” and 5 = “never”, i.e. lower score indicates higher frequency
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Barriers and facilitators
Barriers
Specific barriers to providing effective clinical care reported by the
participants were largely similar for new and experienced SLPs, with minor
differences in ranking. The top three barriers for each group are depicted in
descending order in Figure 9.
New SLPs Experienced SLPs 1. Consistency between medical
specialties in management of patients whose care is palliative
2. Other professionals’ understanding of the SLP role in palliative care
3. Clarity of (medical) goals of care for overall management of the patient
1. Other professionals’ understanding of the SLP role in palliative care
2. Consistency between medical specialties in management of patients whose care is palliative
3. Communication of the patient’s wishes and goals of care between hospital admissions
Figure 9. Ranked barriers to effective care
Facilitators
Specific approaches to skill development were reported to be beneficial.
Again, the rankings assigned by new and experienced SLPs were largely similar, with
only subtle differences. The top ranked facilitators for each group are shown in
descending order in Figure 10.
New SLPs Experienced SLPs 1. Learning through experience 2. Exposure to a palliative care team /
attending courses 3. Specific supervision or teaching from
a clinical supervisor
1. Learning through experience 2. Learning from a colleague 3. Exposure to a palliative care team
Figure 10. Ranked methods of skill development
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Participants identified specific strategies that would assist them to better
manage patients whose care is palliative, with some differences according to their
level of experience. These strategies are shown in descending order in Figure 11.
New SLPs Experienced SLPs 1. Specific training for newly
practicing SLPs in palliative care 2. Better evidence in the literature to
guide best practice 3. A palliative care interest group
1. Professional development courses 2. Better evidence in the literature to
guide base practice 3. Greater awareness of the SLP role in
palliative care by other health professionals
Figure 11. Ranked strategies for improvement
Implications of experience for knowledge and confidence
The means by which practicing SLPs acquired their clinical knowledge in
palliative and EOL care were fairly similar for new and experienced SLPs, as shown
in Table 6. New SLPs ranked as most useful (in descending order): learning through
experience, exposure to a palliative care team or attending courses and specific
supervision/teaching from a clinical supervisor. Experienced SLPs ranked as most
useful (in descending order): learning through experience, exposure to a palliative
care team and specific supervision/teaching from a clinical supervisor. University
training did not appear as one of the top three most useful means of skill development
for new or experienced SLPs.
Unsurprisingly, experienced SLPs reported higher levels of knowledge and
confidence than their less experienced colleagues. Less experienced SLPs reported
significantly lower levels of knowledge of “normal” dying, knowledge of advance
care planning and confidence in providing palliative care compared with their more
experienced colleagues. This difference was statistically significant at the level of p ≤
.05 with a large effect size for knowledge of advance care planning and confidence
and a medium effect size for knowledge of “normal” dying.
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Table 6. Knowledge and confidence in palliative and EOL care New SLPs (n = 35) Experienced SLPs (n = 165) pb
n % n % Knowledge of the process of “normal” dying Very 1 2.94 14 8.48
<.001 Reasonably 12 35.29 77 46.67 Some 14 41.18 56 33.94 Limited 3 20.59 17 10.30 None 0 0 1 0.61 Knowledge of advance care planning Very 0 0 12 7.36
<.001 Reasonably 4 11.76 59 36.20 Some 19 55.88 73 44.79 Limited 10 29.41 18 11.04 None 1 2.94 1 0.61 Confidence in working with patients whose care is palliative Very 0 0 35 21.21
<.001 Reasonably 11 32.35 85 51.52 Some 16 47.06 35 31.31 A little 7 20.59 9 5.45 None 0 0 1 0.61 bMann-Whitney Test
Discussion
This study identified a statistically significant difference between what SLPs
believe to be best practice in palliative and EOL care, and what is currently occurring.
Participants also reported practice barriers and facilitators in this area. These findings
build upon those of previous studies. O’Reilly and Walshe (2015) found that most
SLPs are dissatisfied with the level of SLP involvement in palliative care. Hawksley
et al (2017) reported that palliative SLP care tends to focus more on dysphagia than
communication. This study additionally demonstrated that SLPs would prefer for their
intervention to be more comprehensive and holistic, with scope to do more of a full
range of communication and dysphagia management with this patient group, and to
focus less on diet and fluid modification. This may be a function of most of the group
working in an acute environment, where care may be more responsive than proactive
and preventative.
Although comprehensive practice guidelines do not yet exist for SLPs
working in palliative care and EOL, the conflict between reported actual and ideal
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practice suggests that current palliative SLP practices are not yet aligned with what
previous authors have found to be important to patients: holistic management of
swallowing (Scheinich, Warren, Nekolaichuk, Kassa, & Watanabe, 2008), and
effective communication (Heyland et al., 2006). Continuity of care between services
has also been identified as important to people receiving palliative rehabilitation
(Heyland et al., 2006). The finding that communication of patients’ wishes and goals
of care between admissions was identified as an issue in this study further emphasises
that current practice may not meet patients’ needs. Encouragingly, however, there is
consistency between what other authors have identified as important to people
receiving palliative care and what this group of SLPs identified as their best practice.
Ongoing efforts to move towards the reported ideal practices would therefore benefit
both patients and the SLPs who work with them. This kind of care also has quality
and economic advantages. People who receive early palliative care (including
palliative rehabilitation) have been found to live longer and require less aggressive
EOL care (Temel et al., 2010), justifying comprehensive multidisciplinary palliative
models of care that include SLP.
There is scope for improvement in the preparation of SLPs to work in this
complex and challenging area. As this study found that most SLPs provide palliative
care as part of a range of caseloads, all SLPs must be adequately prepared to do so,
not just those who choose to focus their work this area. Participants reported that they
learned their palliative practice from other SLPs, and their colleagues in palliative
care teams. Whilst the value of such learning experiences should not be
underestimated, the limited inclusion of palliative work in pre-professional education
places graduate SLPs at risk. Those with the least formal preparation are mostly likely
to struggle with palliative work (Keidel, 2002; Melo & Oliver, 2011; Murray
Frommelt, 2003; Rivers, Perkins, & Carson, 2009), but formal education in palliative
care has been found to have a protective effect with other health professions, such as
nursing (Lobb et al., 2010). Inadequate knowledge could also lead to SLPs making
unnecessary referrals for interventions that cause patients and families more alarm
and stress (Toner & Shadden, 2012). Understandably, new graduates reported lower
levels of knowledge of “normal” dying, knowledge of advance care planning and
confidence than those with more experience as SLPs. Consistently with previous
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findings, participants from all levels of experience in this study identified that more
specific training in this area would enhance the quality of their palliative work.
The participants in this study reinforced the need for further research into SLP
practice in palliative care. The limited empirical evidence base and absence of
professional practice guidelines has been identified by a number of authors (Chahda
et al., 2017; Kelly et al., 2016; Krikheli et al., 2017; O'Reilly & Walshe, 2015; Pascoe
et al., 2015; Pollens, 2012), but encouragingly the very presence of these papers
indicates that SLP interest and research activity is beginning to change. SLPs also
want clarification of their role in palliative care in order to guide their practice and
help others to understand the value that can be added by quality SLP care (O'Reilly &
Walshe, 2015). Participants in this study identified a lack of understanding of the SLP
role in palliative care as a top barrier to effective practice. The differences identified
between actual and ideal practice in this study provide an initial step towards the
profession defining its role in this area, which will also assist SLPs to promote and
advocate for the inclusion of SLP in comprehensive palliative care. Pollens (2012)
provides a detailed discussion of the manner in which such education and advocacy
can be achieved. Key features include better communication with our
multidisciplinary colleagues to address the issue of variability in the approach to EOL
management identified by participants, with dialogue that advocates for patients needs
and the development of management plans that respond to individual patient and
family requirements.
There are some limitations to this study. As discussed in Chapter 5, the
recruitment method produced a group of participants who were mostly Australian,
and particularly from eastern Australia. This may limit the capacity to confidently
generalise findings to populations outside Australia. Some of the statements and
terminology used to describe elements of assessment and intervention can be
subjectively interpreted and may potentially represent overlapping clinical activities.
These findings represent only the views of practicing SLPs. Further research with the
recipients of palliative SLP care, their families and other multidisciplinary team
members is essential for shaping and developing palliative SLP care.
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Conclusion
Practicing SLPs identified a difference between the ideal and current
frequency of a range of clinical interventions for this patient group. This difference
was statistically significant. The SLPs expressed a desire to do more of almost all
activities for a more holistic intervention approach; the desire for less diet and fluid
modification was a key exception (Figure 8).
Participants reported that barriers to the provision of effective clinical care
included: consistency between medical specialities in management of patients whose
care is palliative, other professionals’ understanding of the SLP role in palliative care,
clarity of goals of care for overall patient management and communication of the
patients’ wishes and goals of care between hospital admissions.
Most participants developed their skills and knowledge in palliative care
through work experience and learning from colleagues. They also identified a range
of opportunities to improve their ability to work in this area, including: specific
training for newly practicing SLPs in palliative care, ongoing professional
development courses, a stronger evidence base and a greater awareness of the SLP
role in palliative care by other health professionals. Experience and skill development
are significant as new SLPs understandably reported lower levels of: knowledge of
“normal” dying, knowledge of advance care planning and confidence working in
palliative care.
These findings support a range of strategies to enhance quality palliative SLP
care, including: a reorientation to more proactive and holistic patient care, further
research into the value of palliative SLP care (especially with patients, their families
and other members of the multidisciplinary team), inclusion of palliative work within
university training, ongoing professional developmental and promotion of the value of
SLP as part of comprehensive multidisciplinary palliative care. Hawksley et al. (2017)
emphasised that a legitimised and defined role for SLPs in palliative and EOL care is
an essential platform from which to achieve these strategies; this will be addressed in
Chapter 7.
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CHAPTER 7
The Role of Speech-Language Pathologists in Palliative and End-of-Life Care: Reaching
Consensus
92
CHAPTER 7: THE ROLE OF SPEECH-LANGAUGE PATHOLOGISTS IN
PALLIATIVE AND END-OF-LIFE CARE: REACHING CONSENSUS
Introduction
A number of authors have noted that the absence of an agreed definition of the
SLP role in palliative care hampers the development of palliative SLP services
(Chahda et al., 2017; Collis & Bloch, 2012; Hawksley et al., 2017; Krikheli et al.,
2017; O'Reilly & Walshe, 2015). This lack of definition results in role uncertainty,
untimely referrals, service under-utilisation and lost opportunities to improve patient
outcomes (Hawksley et al., 2017). As discussed in Chapter 3, an agreed upon scope of
work for any profession helps define accepted practice and reasonable care from a
medico-legal perspective. Remaining within the bounds of this scope ensures the duty
of care is met and professionals’ negligence risk is minimised (Bryden & Storey,
2011). The absence of professional practice guidelines in palliative SLP makes
defining accepted practice and reasonable care (particularly in dysphagia
management) especially difficult. All these factors make palliative care a challenging
area of practice for SLPs not used to working outside a curative model (Roe & Leslie,
2010). The Round 1 findings discussed in Chapter 6 indicate that participants in this
study want their role to be more diverse than impairment based dysphagia
management; incorporating supportive communication management, education and
advance care planning. Their suggestions for addressing identified barriers to practice
must be acknowledged and implemented.
Agreement on the key aspects of the SLP role in palliative care will help
address a range of issues. The profession itself will have clearer guidance as to the
scope and potential of SLP work in palliative and EOL care. SLPs can then
communicate more effectively to others the full range of supports that they can offer
to people with life-limiting illnesses. SLPs will be in a stronger position to advocate
for patient access to appropriate services. This framework can inform university
training, continuing professional development and future clinical research. A better
understanding of accepted practice provides reassurance to SLPs that they are
providing reasonable care when working outside of a curative/rehabilitative model.
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This chapter addresses the sixth research aim of defining key expectations of
the role and best practice of SLPs in palliative and EOL care, from the perspective of
practicing SLPs.
Method
This chapter reports on Round 2 of the eDelphi study. The methodology is
described in detail in Chapter 4; aspects relevant for this chapter are summarised here.
Development of consensus statements and survey
Responses from Round 1 were synthesised with information extracted from
the literature review to develop statements of practice using simplified concept
mapping. As described in detail in Chapter 4, this approach was considered to be
appropriate for representing the views expounded in the descriptive literature and by
the Round 1 participants, which would inform the statements posed for the consensus
process in Round 2.
Related literature and Round 1 findings were grouped together according to
the detailed description in Chapter 4. A summary statement for each source was
made. The synthesis of these statements was assigned a theme and resulted in a
specific consensus statement that would be presented to participants in Round 2. This
method was depicted in Figure 2 in Chapter 4, and an example is included in Figure
12 below. A total of 28 statements about the role and practice of SLPs in palliative
care were generated. Statements were organised into six categories: 1. Service
provision 2. Communication 3. Swallowing 4. Care planning 5. Professional
development and support and 6. Quality framework.
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Figure 12. Example statement concept map
Involvement in advance care
planning
Literature findings:SLPs have a role in advance
care planning relating to swallowing and/or
communication
SLPs can be involved in advance planning decisions about oral/alternate nutrition and hydration, communication changes/options & tracheostomy placement
The trusting relationships that can develop between people receiving palliative care, and allied health professionals who see them regularly supports discussion of future/advance planning over time
SLPs can assist with communication of advance planning decisions across health care settings to honour patients’ choices and ensure patient-centred care
Round 1 survey findings: Respondents do work that
contributes to advance planning, but not necessarily
as a formal process. They would like to do more work related to formal advance planning, with improved knowledge of how to do
this.
Most respondents are actively involved In discussions of quality of life and the potential impact of future swallowing/communication changes
Few respondents report being involved in formal advance care planning processes
Only a small group of respondents reported reasonable knowledge of advance care planning
Respondents would like to do more education on potential changes to swallowing and communication, more provision of information on communication capacity for decision making, and more involvement in advance care planning
4.1 Speech-Language Pathologists should be active participants in aspects of the
advance care planning process relating to swallowing and/or
communication
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Statements were then presented as a questionnaire on the Survey Monkey
platform. Participants were asked to rank the strength of their agreement with each
statement on a scale of 1-9, where 1 was the weakest level of agreement and 9 was the
strongest level. The criteria for consensus described by Williamson et al. (2012) were
used and consensus was therefore reached if a statement was rated 7-9 by at least 70%
of participants and 1-3 by less than 15% of participants (Williamson et al., 2012).
Statements for which agreement was rated 7-9 by 50-60% would be revised and
carried forward to a third round, however this did not become necessary.
Round 2 data collection occurred between November 2017 and January 2018
through Survey Monkey (http://www.surveymonkey.com). Round 2 participants were
recruited from within the Round 1 group using a purposive sampling approach. An
email was sent to 150 eligible participants with a request to participate in Round 2.
The email included the participant information statement and a link to the web-based
questionnaire.
Round 2 data were downloaded into Microsoft Excel for quantitative analysis.
Qualitative analysis was not performed on the open comments as only a small number
of participants provided comments, however they were still considered for context.
Results
Participants
A total 150 of the 222 participants in Round 1 (67.6%) met the inclusion criteria for
Round 2. All participants who gave consent to be recontacted and provided a current
email address (n = 150) were also practicing SLPs and engaged in a minimum of one
hour per week providing palliative SLP care. Of the 150 invited to participate in
Round 2, 56 participants (37.3%) responded, but four of these indicated that they
spend no time doing palliative work and were excluded from the analysis. Thus, 52
(23.4%) of the original group progressed through the entire eDelphi process.
Some demographic differences between the two groups were apparent. This is
to be expected as a consequence of the refinement of inclusion criteria between the
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rounds, and the duration of time between Round 1 and 2. For example, there were no
participants in Round 2 who had less than 2 years experience as a SLP. Between
rounds participants gained further experience, and their job roles may have changed.
Most Round 2 participants were from NSW, worked with adults, and were not
dedicated to a palliative caseload. Approximately half had more than 10 years
experience as a SLP, and nearly two-thirds had more than five years experience doing
palliative work. Approximately three quarters of the participants spent one day per
week or less doing specifically palliative work. Most (85.6%) worked in public health
settings and two thirds (65.4%) in a metropolitan area. Participants were employed in
both inpatient and outpatient settings. Nearly two-thirds of participants (63.5%)
worked in acute inpatient settings; 50% work in subacute/rehabilitation settings and
40.4% work in palliative care/hospice units. Outpatient services tended to be more
centre-based (84.6%); less than half included visits to homes/domiciliary services
(48.1%) and nursing homes/residential aged care facilities (40.4%). Approximately
one quarter of services had a SLP position dedicated and funded for palliative care
work (28.8% and 25.0% respectively). These ranged from 0.05 to 1.0 full-time
equivalent positions.
Demographic information for participants in both rounds is shown in Tables 7
and 8.
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Table 7. Participant demographics Round 1 Round 2
Age Not collected Mean Range 36 25-59
Gender Not collected n = 52 % Female - - 51 98.1 Male - - 1 1.9 Geographical Location n = 222 % n = 52 % Australian States and Territories n = 188 84.6 n = 46 82.1
NSW 103 28 QLD 44 7 VIC 13 6 SA 9 3 NT 3 0 WA 7 1 ACT 5 1 TAS 4 0 International Countries n = 32 14.4 n = 6 11.5 New Zealand 21 2 Netherlands 4 1 Scotland 2 1 Singapore 1 1 Hong Kong 1 1 Malta 1 0 Canada 1 0 Unknown 1 0 Caseload Age Group n = 222 % n = 52 % Paediatrics 16 7.2 4 7.7 Adults 157 70.7 40 76.9 Both 49 22.1 8 15.4 Experience as SLP n = 222 % n = 52 % Less than 1 year 15 6.8 0 0 1-2 years 22 9.9 0 0 2-5 years 34 15.3 8 15.4 5-10 years 54 24.3 16 30.8 10+ years 97 43.7 28 53.8 Experience in Palliative Care Not collected n = 52 % Less than 1 year - - 0 0 1 year - - 1 1.9 2-5 years - - 19 36.5 5-10 years - - 16 30.8 10+ years - - 16 30.8 Dedicated to Palliative Caseload n = 218 % n = 52 % No 195 89.5 39 75 Yes 23 10.5 13 25 Hrs/week in Palliative Care n = 218 % n = 52 % None 17 7.8 0 0 1-3 hours 128 58.7 32 61.5
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3-8 hours 41 18.8 9 17.3 1 day 15 6.9 6 11.5 2 days 10 4.6 2 3.8 3-4 days 5 2.3 3 5.8 Full time 2 0.9 0 0
Table 8. Settings and services Round 1 Round 2 Public vs. Private n = 222 % n = 52 % Both 14 6.3 5 9.6 Public 185 83.3 44 84.6 Private 23 10.4 3 5.8 Inpatient Settings n = 222 % n = 52 % Acute 148 66.7 33 63.5 Subacute/ Rehabilitation 90 40.5 26 50.0 Palliative Care Unit/ Hospice 68 30.6 21 40.4 Outpatient Settings n = 222 % n = 52 % Centre based 94 42.3 44 84.6 Home visiting 85 38.3 25 48.1 Nursing home visiting 54 24.3 15 40.4 Location Type n = 222 % n = 52 % Metro 134 60.4 34 65.4 Regional 72 32.4 16 30.8 Rural 34 15.3 2 3.8 Dedicated Palliative SLP Position n = 222 % n = 52 % No 172 78.9 37 71.2 Yes 46 21.1 15 28.8 Funded Palliative SLP Position n = 222 % n = 52 % No 173 79.4 39 75.0 Yes 19 8.7 13 25.0 Unsure 26 11.9 0 0 FTE of Funded Positions Not collected Mean Range
- - 0.39 0.05-1.0 Consensus statements
Consensus was reached for all 28 statements during Round 2. A third
consensus round was therefore not required. The statements, and the strength of
agreement with each, can be seen in Table 9 and Appendix 7. Agreement was strong
for all statements with a median rating of 8 or higher. At least 80% of participants
rated their agreement above 7 for the majority of statements. Agreement was
considered strongest, when more than 90% of participants rated their agreement
above 7, and the range was 3 points or less. Statements with the strongest agreement
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are shown in Figure 13. These seven statements emphasise the importance of access
to SLP services as part of multidisciplinary person-centred palliative care, responding
to an individual’s circumstances, and quality of life. The statements also highlight the
significance of professional support and education, both for SLPs and other
multidisciplinary team members.
1.1 All people with life-limiting illnesses should have access to Speech-Language Pathology if indicated (i.e. they develop swallowing and/or communication impairments).
3.3 Specific swallowing assessments or interventions should be appropriately withheld if considered futile or will cause undue distress or harm. 5.4 Speech-Language Pathologists with experience in providing palliative care should be encouraged and supported to provide formal and informal professional development opportunities for peers and students.
5.5 Non-standard supervision and/or networking strategies should be considered, particularly where the Speech-Language Pathologist is an isolated or sole clinician, such as group supervision, peer supervision, teleconferencing and videoconferencing with Speech-Language Pathologists outside their work group.
6.1 Speech-Language Pathologists with experience in providing palliative care should be encouraged and supported to provide formal and informal professional development opportunities for other professions.
6.2 Speech-Language Pathologists should collaborate with patients, families and/or carers to develop patient-centred communication and swallowing goals that are monitored and revised as the patient’s circumstances and wishes change.
6.1 Speech-Language Pathologists should document and communicate with the
multidisciplinary team regarding patient-centred goals. They will work collaboratively with the multidisciplinary team to support achievement of these goals.
Figure 13. Statements with strongest agreement
Statements with the weakest agreement (while still meeting consensus criteria)
were those where fewer than 80% of participants rated their agreement 7 or above,
and the range was 6 or more points. These statements are shown in Figure 14. There
was divided opinion on the importance of SLPs reporting on a person’s
100
communication skills, and the application for helping to determine a person’s
decision-making capacity. A small number of comments on statement 2.3 recognised
that assessment of capacity is complex, with contributions from a range of
multidisciplinary team members, including medical specialists and occupational
therapists. Participants also suggested that some instrumental swallowing assessments
and interventions (statement 3.2) would not necessarily be appropriate in all
circumstances, but would be offered where they have the potential to make changes to
a patient’s decisions or care plan. Comments on statement 3.5 reflected two opposing
points of view; SLP involvement was inappropriate and a waste of resources if a
patient decided on a course of action that was inconsistent with SLP swallowing
recommendations, as opposed to supporting patients in their personal choices about
oral intake. Comments on statement 3.8 recognised that SLPs may not have extensive
clinical expertise in oral hygiene provision, which requires collaboration with nurses.
2.1 All people referred to Speech-Language Pathology should have (at least) informal commentary made on their communication skills. 2.3 Speech-Language Pathology findings regarding a person’s communication skills will help determine a person’s capacity for informed/independent decision making. 3.2 People with swallowing impairments should be offered the full range of assessments and interventions (e.g. videofluoroscopic swallowing studies). 3.5 People who have accepted risk and continue on oral intake on which there is a risk of aspiration should continue to have access to Speech-Language Pathology reviews as required/appropriate. 3.8 Speech-Language Pathologists can assess oral hygiene and provide recommendations regarding oral care.
Figure 14. Statements with weakest agreement
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Table 9. Level of agreement with consensus statements
(Rating scale of 1-9, where 1 = weakest agreement and 9 = strongest agreement)
Median Min Max Range n No. rated 7-9
% rated 7-9
No. rated 1-3
% rated 1-3
1. Service provision 1.1 All people with life-limiting illnesses should have access to
Speech-Language Pathology if indicated (i.e. they develop swallowing and/or communication impairments).
9 6 9 3 52 51 98% 0 0
2. Communication 2.1 All people referred to Speech-Language Pathology should have
(at least) informal commentary made on their communication skills.
9 1 9 8 52 41 79% 2 4%
2.2 All people referred to Speech-Language Pathology found to have a communication impairment, and their carers, should be offered:
o Communication strategies o Communication partner training o Advice and counselling about appropriate alternative and
augmentative communication options Where appropriate, communication therapy and related psychosocial support should be offered (with consideration of diagnosis, prognosis, goals of care and patient wishes).
8.5 4 9 5 52 46 88% 0 0%
2.3 Speech-Language Pathology findings regarding a person’s communication skills will help determine a person’s capacity for
8 1 9 8 52 44 85% 1 2%
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(Rating scale of 1-9, where 1 = weakest agreement and 9 = strongest agreement)
Median Min Max Range n No. rated 7-9
% rated 7-9
No. rated 1-3
% rated 1-3
informed/independent decision making. 3. Swallowing
3.1 All people referred to Speech-Language Pathology and found to have a swallowing impairment, and their carers, should be offered:
o Safe swallowing strategies o Oral care information o Information and counselling about dysphagia, risks of
aspiration/choking, whether there are specific means by which these risks can be mitigated and potential consequences, in order to make informed decisions about consumption of oral foods/fluids.
Where appropriate, swallowing therapy should be offered (with consideration of diagnosis, prognosis, goals of care and patient wishes).
9 5 9 4 52 48 92% 0 0%
3.2 People with swallowing impairments should be offered the full range of assessments and interventions (e.g. videofluoroscopic swallowing studies).
9 3 9 6 51 39 76% 1 2%
3.3 Conversely, specific swallowing assessments or interventions should be appropriately withheld if considered futile or will cause undue distress or harm.
9 7 9 2 51 51 100% 0 0%
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(Rating scale of 1-9, where 1 = weakest agreement and 9 = strongest agreement)
Median Min Max Range n No. rated 7-9
% rated 7-9
No. rated 1-3
% rated 1-3
3.4 Patients/substitute decision makers should be supported to make decisions about quality of life eating and drinking choices for themselves. These should be fully informed decisions supported by adequate information about expected swallowing changes, prognosis and the implications of such decisions. Speech Pathologists can provide this information.
9 5 9 4 51 49 96% 0 0%
3.5 People who have accepted risk and continue on oral intake on which there is a risk of aspiration should continue to have access to Speech-Language Pathology reviews as required/appropriate.
8 1 9 8 51 39 76% 4 8%
3.6 Speech-Language Pathologists can provide advice on comfort-based diet and fluid texture selection when feeding difficulties exist but further investigation and treatment is not being pursued (e.g. suspected oesophageal dysphagia impacting swallowing comfort but not for further investigation and/or treatment).
9 5 9 4 51 45 88% 0 0%
3.7 Speech-Language Pathologists can facilitate taste-based oral stimulation in the context of severe intractable dysphagia where appropriate (e.g. flavoured swabs, taste and spit, oral sprays).
8 3 9 6 51 43 84% 1 2%
3.8 Speech-Language Pathologists can assess oral hygiene and provide recommendations regarding oral care.
8 1 9 8 51 38 75% 3 6%
3.9 Patients/substitute decision makers should be encouraged to include quality of life choices regarding eating and drinking in
9 4 9 5 51 50 98% 0 0%
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(Rating scale of 1-9, where 1 = weakest agreement and 9 = strongest agreement)
Median Min Max Range n No. rated 7-9
% rated 7-9
No. rated 1-3
% rated 1-3
advance care plans.
4. Care Planning 4.1 Speech-Language Pathologists should be active participants in
aspects of the advance care planning process relating to swallowing and/or communication.
8 1 9 8 51 47 92% 1 2%
4.2 All people referred to Speech-Language Pathology should have documented communication and/or swallowing plans that are communicated across care settings and care providers.
9 4 9 5 49 47 96% 0 0%
5. Professional Development and Support 5.1 Student Speech-Language Pathologists should be offered
learning experiences related to palliative care as part of pre-vocational training.
9 5 9 4 49 43 88% 0 0%
5.2 Speech-Language Pathologists with less than 2 years experience providing palliative care should have supervision and support from a Speech-Language Pathologist more experienced in providing palliative care.
9 2 9 7 49 44 90% 1 2%
5.3 All Speech-Language Pathologists providing palliative care should have access to professional networks for confidential support, ongoing development and self-care.
9 5 9 4 49 47 96% 0 0%
5.4 Non-standard supervision and/or networking strategies should be 9 6 9 3 47 46 98% 0 0%
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(Rating scale of 1-9, where 1 = weakest agreement and 9 = strongest agreement)
Median Min Max Range n No. rated 7-9
% rated 7-9
No. rated 1-3
% rated 1-3
considered, particularly where the Speech-Language Pathologist is an isolated or sole clinician, such as group supervision, peer supervision, teleconferencing and videoconferencing with Speech-Language Pathologists outside their work group.
5.5 Speech-Language Pathologists with experience in providing
palliative care should be encouraged and supported to provide formal and informal professional development opportunities for peers and students.
9 6 9 3 47 46 98% 0 0%
5.6 Speech-Language Pathologists with experience in providing palliative care should be encouraged and supported to provide formal and informal professional development opportunities for other professions.
9 6 9 3 47 46 98% 0 0%
6. Quality Framework 6.1 Speech-Language Pathologists should collaborate with patients,
families and/or carers to develop patient-centred communication and swallowing goals that are monitored and revised as the patient’s circumstances and wishes change.
9 6 9 3 46 44 96% 0 0%
6.2 Speech-Language Pathologists should document and communicate with the multidisciplinary team regarding patient-centred goals. They will work collaboratively with the multidisciplinary team to support achievement of these goals.
9 6 9 3 46 44 96% 0 0%
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(Rating scale of 1-9, where 1 = weakest agreement and 9 = strongest agreement)
Median Min Max Range n No. rated 7-9
% rated 7-9
No. rated 1-3
% rated 1-3
6.3 Speech-Language Pathologists should evaluate the outcomes of their work with patients to determine the quality and impact of services provided for patients, families and/or carers.
9 4 9 5 46 42 91% 0 0%
6.4 Outcome measures appropriate for use in palliative swallowing and communication management should be developed, to support both clinical practice improvement and clinical research.
9 4 9 5 46 40 87% 0 0%
6.5 Speech-Language Pathologists should be encouraged and supported to conduct clinical research in this area, in order to develop the professional evidence base.
9 4 9 5 46 41 89% 0 0%
6.6 Speech-Language Pathologists should advocate for patient access to quality palliative Speech-Language Pathology care as per these consensus statements.
9 5 9 4 46 44 96% 0 0%
6.7 Speech-Language Pathologists should advocate for adequate resources to support provision of quality palliative Speech-Language Pathology care as per these consensus statements.
9 4 9 5 46 44 96% 0 0%
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Discussion
Consensus was reached for all statements on SLP practice in palliative care,
indicating that SLPs who participated in this process agree with the descriptive
literature in this area, and that it can be used to define agreed SLP practice. Thus, the
sixth and final research aim was achieved. These statements align with many of those
included in the National Consensus Statement: Essential Elements for Safe and High-
Quality End-of-Life Care (Australian Commission on Safety and Quality in Health
Care, 2015), or NCS. The emphasis throughout this document on communication with
patients and their families at all times endorses the role of SLP to support effective
communication. It also specifically sates that “dying patients should be supported to
receive oral food and fluids for as long as they wish” (Australian Commission on
Safety and Quality in Health Care, 2015, p. 16), which SLP expertise can also
facilitate. There was strong agreement amongst the participants of this study that
people with life-limiting illnesses should have access to SLP as indicated (statement
1.1). This aligns with the literature that supports SLP as part of the overall
multidisciplinary package of care throughout the disease trajectory (Chahda et al.,
2017; Eckman & Roe, 2005; Roe & Leslie, 2010) and that this is definitely part of the
SLP role (O'Reilly & Walshe, 2015). The NCS emphasises that safe and high quality
EOL care requires the availability of qualified, skilled and experienced
interdisciplinary teams (Australian Commission on Safety and Quality in Health Care,
2015). Early referral to SLP is ideal and allows more treatment options than if referral
is delayed until severe impairments are present (Brownlee & Bruening, 2012; Salt,
Davies, & Wilkinson, 1999).
Communication statements
The importance of communication was recognised by the strong consensus
with statements 2.1, 2.2 and 2.3. It maintains social and emotional closeness, allows
people to express needs and concerns, supports people’s autonomy regarding their
medical treatment and gives control over end of life planning (Brownlee & Bruening,
2012; Chahda et al., 2017; Pollens, 2004; Pollens, 2012). Palliative communication
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therapy can improve quality of life, dignity and sense of self (Frost, 2001; Pollens,
2004; Pollens, 2012). Effective communication with patients and carers is emphasised
by the Australian Commission for Safety and Quality in Health Care (hereafter
referred to as the ACSQHC) in the NCS. It is significant to note that some
participants commented that reporting on communication was unnecessary if the
referral had been for swallowing. Whilst participants with these perceptions were in
the minority, such attitudes can undermine the equivalent importance of promoting
effective communication at the end of life (Hawksley et al., 2017; Toner & Shadden,
2012). This is concerning, if part of the SLP role is to educate other members of the
multidisciplinary care team on the importance of communication (Pollens, 2012).
There was strong agreement with statement 2.2, which highlighted the
diversity of palliative communication intervention and that options to support more
effective communication should always be considered. This recognises that SLP
intervention can include direct therapy with the patient, indirect therapy (such as
communication partner training), education and establishing alternative and
augmentative communication options (Pollens, 2004; Pollens, 2012; Salt et al., 1999).
Statement 2.2 also supports the concept of palliative rehabilitation, where impairment
based therapy aims to improve or sustain a desired level of function. This is valuable,
as palliative communication therapy can improve quality of life, dignity and sense of
self (Frost, 2001; Pollens, 2004; Pollens, 2012). Finally, statement 2.3 recognises that
SLPs can provide information about a person’s communication and cognitive status in
terms of decision-making ability, which can guide the care team’s in developing a
patient centred care plan (Pollens, 2004; Pollens, 2012).
Dysphagia statements
The consensus with statements 3.1 to 3.9 recognises the role of SLPs in the
palliative management of dysphagia, but also describes a diversity that may not
always be achieved in clinical practice. Statement 3.1 underpins the importance of
providing information about swallowing, its impact on a person’s ability to achieve
oral nutrition and hydration and the risks and options that exist to support informed
decision-making (Cohen et al., 2009; Eckman & Roe, 2005; Pollens, 2004; Pollens,
2012; Toner & Shadden, 2012). Statement 3.2 identifies that instrumental swallowing
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assessments may be appropriate in some circumstances, and statement 3.3 recognises
that these may also be contraindicated if, for example, someone is too medically
unwell, unable to participate or if the examination will not change the outcome of
swallowing management (Pollens, 2004). This is consistent with the NSC, which
emphasises that patients should not be burdened by futile investigations and
treatments (Australian Commission on Safety and Quality in Health Care, 2015). The
importance of providing comprehensive information to support fully informed and
autonomous decision making regarding eating and drinking and quality of life
(Lambert, 2012) is recognised by statement 3.4 and emphasised in statement 3.9,
encouraging the inclusion of wishes regarding eating and drinking in advance care
plans. The NSC, which emphasises the provision of clear and realistic information to
support patients to direct their own care, and the use of advance care planning to do
so, supports this.
Statements 3.5, 3.6 and 3.7 recognise the different ways in which SLPs can
help promote pleasurable eating experiences, assist families to express care and
compassion by “nourishing” loved ones where normal eating and drinking is not
achievable, including tastes and provision of oral hygiene (Cohen et al., 2009;
Eckman & Roe, 2005; Langmore et al., 2009; Pollens, 2004; Pollens, 2012; Toner &
Shadden, 2012). Participants’ comments about the SLPs and oral care recognise the
role of nurses’ expertise in this area and the importance of multidisciplinary
collaboration in dysphagia management. Statement 3.5 acknowledges the fact that
symptoms and patients’ wishes can vary with the effects of their disease, pain,
medication and fatigue (Salt et al., 1999). Accordingly, the NSC emphasises patients’
rights to accept and refuse treatments (Australian Commission on Safety and Quality
in Health Care, 2015). Ongoing access to SLP is therefore important for monitoring
change and recommending new interventions as required (Salt et al., 1999), even
when patients have made a decision that is inconsistent with SLP recommendations.
Some potentially controversial statements were included in the “dysphagia”
category, but agreement was still achieved in a single round. Statement 3.2 challenges
the idea that objective assessment could be futile, as opposed to offering additional
information for a person to make informed decisions about their eating and drinking.
Statement 3.5 places more weight on equitable access to care and autonomous
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decision-making, than adhering to exact recommendations being a condition for
ongoing access to SLPs services. Statement 3.6 recognises that SLPs can and do
provide advice on diet selection for comfort, even when the cause and nature of
dysphagia is not fully clear. Finally, 3.8 refers to an area where the responsibility for
oral care is shared with nursing. The fact that agreement was still reached on
potentially controversial statements within a single round suggests that the statements
were truly reflective of the SLPs perspectives captured in Round 1.
Some participants’ comments reflected a belief that people should only access
SLP intervention if they follow the SLPs recommendations, and not if they decide to
eat and drink against the SLPs advice. This is not patient-centric care, and may reflect
a simplistic understanding of the SLP role or a feeling of rejection for services refused
(Groher & Groher, 2012; Roe & Leslie, 2010). It may indicate a need for better pre-
professional training, and education for existing SLPs that teaches SLPs about the
scope of the role in palliative care, and place emphasis not on curing, but doing as
much as possible (Pascoe et al., 2015; Roe & Leslie, 2010; Roe et al., 2007). This
could help reorient SLPs to a person centric approach of responding positively and
supportively when a patient choses an pathway that does not necessarily follow the
SLP “expert” prescription (Groher & Groher, 2012; Roe & Leslie, 2010) and is a
potential opportunity for future research.
Care planning statements
SLPs recognised the role that they can play in advance and future care
planning in statements 4.1 and 4.2. Allied health professionals can be instrumental in
assisting their patients with advance care planning, even though this has not
traditionally been part of their scope of work. The need for appropriate training and
development in this area, particularly with respect to the associated legal framework,
has been acknowledged (Kelly et al., 2018; Lambert, 2012). The very nature of allied
health work fosters the development of strong relationships with patients and their
families. For SLPs, involvement in advanced planning can assist with decisions about
oral or alternate nutrition and hydration and the facilitation of communication
(Lambert, 2012), but they can also promote patient awareness of advance planning
more broadly. Communication of such plans across settings and care providers is
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important to honour patients’ wishes and promote patient centred care (Groher &
Groher, 2012), which is emphasised by statement 4.2.
Professional development and support statements
SLPs’ agreement with the need for comprehensive, palliative-specific training
and supervision is highlighted by the statements in section 5. Inclusion of palliative
care in pre-professional training is addressed by statement 5.1, and the ongoing
supervision and development of practicing SLPs is addressed by 5.2, 5.3 and 5.4. The
ACSQHC also emphasises the importance of appropriate training and supervision in
the NSC (Australian Commission on Safety and Quality in Health Care, 2015). This is
important as SLPs in generalist acute and community roles will encounter the need to
provide palliative management for a range of patients (Pascoe et al., 2015; Roe &
Leslie, 2010). They need to be prepared to work with death as an unavoidable event
(Roe & Leslie, 2010), and to understand the complexities of this area and navigate
them in a way that ensures the best care for vulnerable patients (Pascoe et al., 2018;
Smith et al., 2011). Students can have positive experiences when exposed to palliative
working (Mathisen et al., 2011; Rivers et al., 2009), and adequate training and support
has a protective effect against compassion fatigue and burnout (Pascoe et al., 2015;
Pollens, 2012). Statement 5.4 responds to the fact that rural and isolated clinicians
may have specific education needs (Lambert, 2012; Toner & Shadden, 2012) and
statement 5.2 acknowledges that SLPs with different prior experiences in palliative
care will have different development needs. Naturally, the onus is on SLPs with
experience in working palliatively to share their knowledge with both their SLP and
multidisciplinary colleagues (Eckman & Roe, 2005; Pollens, 2004; Pollens, 2012; Salt
et al., 1999), emphasised by statements 5.5 and 5.6. There is an opportunity to
develop a community of practice and organisational support for experienced SLPs to
share knowledge, expertise and to provide continued professional development.
Quality framework statements
There is substantial scope to establish the value and improve the quality of
palliative SLP care, to which the statements in section 6 respond. The NSC states that
evaluation, feedback and improvement are fundamental elements of safe and quality
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palliative and EOL care (Australian Commission on Safety and Quality in Health
Care, 2015). Statements 6.1 and 6.2 address the need for intervention goals that are
responsive to patients’ wishes and circumstances, and that care should always be
collaborative with the multidisciplinary team (Pollens, 2004; Pollens, 2012; Roe &
Leslie, 2010; Toner & Shadden, 2012). The “pioneering” role of SLPs, described by
Hawksley et al. (2017) is recognised by statement 6.6 and 6.7. Part of the SLP role is
to advocate for patient access to adequately resourced services, reflected in statements
6.6 and 6.7. Working with the multidisciplinary team can increase awareness of EOL
communication and swallowing issues, and the diversity of the SLP role in working
with them (Pollens, 2004; Pollens, 2012; Roe & Leslie, 2010; Toner & Shadden,
2012).
Statements 6.3 and 6.4 emphasise the importance of measureable outcomes
and research with which to promote the positive impact of SLP services for patients
and their families. The comments associated with these statements do, however
recognise the challenges of doing so that have been described by other authors,
including not burdening patients who are already experiencing life-limiting illnesses,
and how to define appropriate outcomes (Leslie et al., 2014; Salt & Robertson, 1998).
It has been suggested that engaging patients and their families in research design may
be a way to generate information that is most meaningful for all involved (Leslie et
al., 2014).
Limitations
This study has several limitations. The consensus statements are broad in
nature, given that they represent one of the first attempts to explore and empirically
define the SLP role in palliative and EOL care. There is selection bias associated with
participants self-selecting for the first round, in which participants from the eastern
states of Australia, particularly NSW, were over-represented. The inclusion criteria
set for participation in Round 2 and the time between rounds further reduced the
number and diversity of participants, who mostly worked in acute facilities in NSW.
Consequently, differing perspectives from rural and non-acute services and other
States and Territories may not be represented. Comprehensive analysis of the
differences between Australian and international participants was not possible, due to
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the small number of non-Australian residents who participated. Their responses were
still included, particularly due to the small overall number of responses in Round 2.
The responses from Round 1 were also consistent with many of O’Reilly and
Walshe’s (2015) findings with their international participants; therefore inclusion of
the non-Australian residents should not have unduly influenced the findings. Findings
were based on participant self-report and it is not possible to verify their demographic
information or the services they provided in palliative care. The small number of
participants precluded more detailed statistical analysis of the Round 2 data. The even
smaller number of comments prevented more detailed qualitative analysis of
participants’ perspectives on the consensus statements. More comprehensive
qualitative research on the SLP experience in palliative care is a logical future
direction. The consensus statements are specific to SLPs only, and their responses are
based on their own professional experiences. The views of consumers and
multidisciplinary colleagues have not been included in this work. Future research that
incorporates a range of perspectives is essential to be sure that patients and families
are at the centre of SLP practice that is embedded within a coordinated
multidisciplinary research framework.
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Conclusion
This study generated a set of consensus statements that begin to formally
define key aspects of the SLP role and practice in palliative and EOL care. These
statements align with the ACQSHC NSC, which describes the essential elements for
safe and high quality EOL care in Australia. The agreement of SLPs with the
statements put forth in this study reflects that they strongly agree with the SLP role
outlined in the descriptive literature, but that this is not always achieved in practice.
The statements emphasise patient access to appropriate intervention for
communication and swallowing changes, as part of comprehensive multidisciplinary
care. They describe the diverse, flexible and patient-centred nature of these
interventions, focusing on patients’ comfort and quality of life. Education of SLPs on
palliative and EOL care during pre-professional training, and throughout their
professional career, is supported to ensure SLPs understand their role and can provide
care that is appropriate to this unique area. Ongoing research and better evaluation of
the outcomes of SLP care is endorsed. All of these elements will help increase
awareness of the SLP role in palliative and EOL care and, it is hoped, result in better
quality care for people with life-limiting illnesses. These statements provide a
framework against which services can be evaluated. They support further empirical
research, and advocacy for the SLP role to patients and multidisciplinary colleagues.
In doing this, the statements can be tested, challenged and refined so that they evolve
with the changing nature of SLP practice in palliative and EOL care.
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CHAPTER 8
Summary and Conclusions
116
CHAPTER 8: SUMMARY AND CONCLUSIONS
Summary of findings
This thesis explores the work of SLPs in palliative and EOL care, to arrive at a
definition of key expectations of the role and best practice, from the perspective of
practicing SLPs.
A review of the existing literature on the role of SLP in palliative and EOL
care was reported in Chapter 2 and achieved the first research aim to critically
appraise the literature describing the SLP role in palliative care. The following
questions were posed in the review:
1) What is the best practice role for SLPs in palliative care?
2) What services and intervention do SLPs current provide to patients with life-
limiting illnesses?
3) Is there a gap between what the literature defines as best practice and what
actually occurs in everyday SLP practice?
4) If there is a gap, what are the barriers to providing best practice?
5) What opportunities exist to improve everyday SLP practice in palliative care?
Thirty-two papers were found to be relevant to the questions posed. As most of the
literature was descriptive and heterogeneous, formal meta-analysis was not
appropriate. A narrative exploration of themes was conducted. Specific roles for SLPs
in dysphagia, communication and holistic professional practice were described, but
there was insufficient evidence to determine whether this is reflected in typical SLP
practice. Potential challenges to providing services include: the impact of working
with people who are dying, limited professional preparation, access to further
education and legal and ethical considerations. The lack of formal research studies
into SLPs in palliative and EOL care limits the application of evidence-based practice
in this area.
Chapter 3 achieved the second research aim; to describe the medico-legal and
ethical aspects of palliative dysphagia management to increase SLPs’ awareness of a
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range of important issues. Complexities arise when working outside of a curative
model. When the risk of aspiration of food and fluids cannot be eliminated, the
options available for nutrition and hydration may hasten a person’s decline. SLPs can,
and have been, involved in civil legal actions in this context. Some SLPs may choose
to withdraw from a person’s care; others may acknowledge the moral discomfort and
continue to work in a patient centred manner. It is in this context that SLPs benefit
from a better understanding of the legal and ethical framework around their
intervention, in order to maintain a patient-centred approach to care. Several legal
concepts were applied specifically to palliative dysphagia management; the status of
nutrition and hydration as a medical treatment, legal capacity, informed consent and
reasonable care. A decision-making model was proposed, that blends consideration of
both legal and ethical concepts. Recommendations were made for SLPs’ clinical
documentation to ensure all these concepts are addressed as part of clinical care.
Given the importance of “accepted practice” for defining reasonable care, further
research that defines SLP practice in palliative and EOL care is essential not just from
a clinical perspective, but from a legal one as well.
An outline of the study methodology for this program of research was
provided in Chapter 4. This methodology underpinned the results reported in
Chapters 5, 6 and 7.
The nature of current SLP practice in palliative and EOL care was reported in
Chapter 5. This achieved the third research aim; to identify and describe current SLP
services. SLPs provide palliative intervention for people with a range of neurological,
oncological and age-related conditions across a range of admitted and non-admitted
service contexts. Palliative intervention is provided across the full range of SLP
services; specialist palliative SLP positions are very rare. The nature of SLP
intervention changes according to the individuals’ needs in different palliative phases.
SLPs tend to be most actively engaged with patients when they are stable or
deteriorating. Intervention consists more of assessment and education/strategies than
direct therapy, however short periods of therapy occur when patients’ conditions are
stable. SLPs tend to await requests for intervention from patients, families or
multidisciplinary team members when people enter the terminal phase. SLP
involvement in the bereavement phase is rare. The types of clinical interventions
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provided by experienced SLPs are more diverse than those provided by newer SLPs.
SLPs are part of multidisciplinary teams, but tend not to be involved in advance care
planning.
Chapter 6 addressed the fourth and fifth research aims; to determine how
SLPs’ perceived best quality service compares with current practices, and to identify
barriers to providing optimal care and determine what SLPs recommend to facilitate
improvement in clinical practice and palliative care. It reported on SLPs perceptions
of best practice in palliative and EOL care, and found that current practice does not
reflect this ideal. A statistically significant difference was identified between the
current and ideal frequencies of almost all SLP clinical activities. Participants
expressed a desire to do more holistic, supportive and patient-centred interventions.
No change in the frequency of dysphagia assessment was recommended, but a
reduction in the prescription of diet and fluid modification was. The reported barriers
to the provision of effective clinical care included: consistency between medical
specialities in management of patients whose care is palliative, other professionals’
understanding of the SLP role in palliative care, clarity of goals of care for overall
patient management and communication of the patients’ wishes and goals of care
between hospital admissions. Limited pre-professional preparation was reported; most
SLPs developed their skills in palliative and EOL care through work experience and
learning from colleagues. Participants recommended a range of strategies to improve
their ability to work in palliative and EOL care, including specific training for newly
practicing SLPs in palliative care, ongoing professional development courses, a better
evidence base in the literature and a greater awareness of the SLP role in palliative
care by other health professionals.
The key expectations of the role and best practice of SLPs in palliative and
EOL care were reported in Chapter 7, achieving the sixth and final research aim. A
set of 28 specific statements was generated from information collected in the results
reported on in Chapters 4 and 5, along with the literature reviewed in Chapters 1
and 2. Consensus on these statements was reached within a single eDelphi round.
These statements align with the Australian National Consensus Statement: Essential
Elements for Safe and High-Quality End-of-Life care (Australian Commission on
Safety and Quality in Health Care, 2015). They emphasise patient access to
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appropriate intervention for communication and swallowing changes, as part of
comprehensive multidisciplinary care. They describe the diverse, flexible and patient-
centred nature of these interventions, focusing on patients’ comfort and quality of life.
Education of SLPs on palliative and EOL care during pre-professional training, and
throughout their professional career, is supported to ensure SLPs understand their role
and can provide care that is appropriate to this unique area. Ongoing research and
better evaluation of the outcomes of SLP care is endorsed.
Future directions
Professional practice guidelines
The recent emergence of several research studies into the work of SLPs in
palliative and EOL care is encouraging. A previously barren landscape of empirical
research is slowly transforming. The findings of these first few studies, and the
research reported in this thesis are very complementary. Similar challenges have been
identified, and similar opportunities for improvement proposed. First and foremost,
the need for professional practice guidelines is clear. Several authors have emphasised
this need already (Chahda et al., 2017; Hawksley et al., 2017; Krikheli et al., 2017).
The consensus statements reported in this thesis provide an introductory framework
for the agreed role of SLPs in adult palliative care, which can inform an initial set of
guidelines. Kriheli et al.’s (2018) findings, once available, will broaden the scope to
paediatric palliative care. Associated models of care and benchmarking tools can be
developed, validated, and SLP services constructed and evaluated accordingly.
Professional practice guidelines also support the development of consistent and
effective pre-professional education and ongoing professional development. Pascoe,
Breen & Cocks (2018) have proposed a curriculum, but it must be underpinned by a
common framework from which the SLP profession works.
Palliative education for SLP students
Palliative and EOL care learning experiences must be included in SLP
professional preparation courses. This study concurs with Pascoe, Breen & Cocks
(2018) in confirming that SLPs are generally not well prepared by their university
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training to work in palliative care, even for those who graduated more recently. This
is alarming, as this thesis confirms that SLPs must be prepared to provide palliative
and EOL care in a range of caseloads and service delivery models, not just in
specialist palliative care services. The case for change is underpinned by the fact that
those who do receive learning experiences in palliative and EOL care at university do
report feeling better prepared. Additionally, Palliative Care Australia (2012) directs
that all university training for health professionals should meet the benchmarks of the
PCC4U package, in order that clinical care be provided in accordance with the
National Consensus Statement: Essential Elements for Safe and High-Quality End-of-
Life Care (Australian Commission on Safety and Quality in Health Care, 2015;
Palliative Care Australia, 2012). Unfortunately, PCC4U still has limited applicability
for SLP students due to the minimal inclusion of SLP-relevant examples. Pascoe,
Breen and Cocks (2018) propose a specific university curriculum that includes an
understanding of the medicolegal and ethical aspects of working palliatively,
particularly with respect to eating and drinking. The paper that forms Chapter 3 of this
thesis will be a key resource for such education. The consensus statements described
in Chapter 6 of this thesis will also be a valuable tool to inform the development of
university curricula, given their close alignment with the National Consensus
Statement (Australian Commission on Safety and Quality in Health Care, 2015). The
effectiveness of Pascoe, Breen and Cocks’ (2018) proposed curriculum on the
confidence of SLPs and the service that they provide should be further researched,
particularly whether this results in more proactive and holistic patient-centred care,
rather than the more reflexive, acute, dysphagia-driven activity reported to be more
frequent in this thesis.
Continuing professional development in palliative care
Ongoing professional development in palliative care is also necessary for
SLPs who have already graduated, who will not benefit directly from the introduction
of undergraduate training in palliative care. Various programs do exist, such as
PCC4U, and the Program of Experience in the Palliative Approach (Currow &
Phillips, 2013), along with virtual communities of practice for professional support,
such as CareSearch (www.caresearch.com.au). As this thesis found that SLPs want
further training, supervision and support in working palliative, it may be that SLPs are
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either unaware of these resources, or they do not meet their learning and development
needs. Pascoe, Breen and Cocks (2018) also found that just under half of their
participants had not accessed further training in palliative care. Further research into
the educational requirements and preferences of practicing SLPs in palliative care,
and their awareness of resources that do exist would support the development of
ongoing education tools and networks that properly meet their needs. Research into
novel education and support programs will ensure that their effectiveness is
understood and they can be continuously improved.
Future research directions
Further research into the outcomes of SLP intervention is essential. This thesis
focused on only the experience of SLPs. The voices of people with life-limiting
illnesses, their families, friends and carers must be heard, to ensure that the goals of
our work originate from consumers themselves (Hammill et al., 2014). Without clear
evidence of the effectiveness of SLP intervention, advocacy will not be possible for
people to access services such as ours that promote function, independence and
quality of life (Okamura, 2011). The identification and development of suitable
outcome measures for use with this population is imperative. Patient reported
outcome measures (PROMS), used with patients and caregivers, are a key tool used in
broader palliative care research (Pigeon et al., 2018). There are not, however, many
psychometrically sound tools (Michels, Boulton, Adams, Wee, & Peters, 2016).
Additionally, most of the broader palliative care outcome measures do not consider
communication, eating or drinking. Those that do are unlikely to be sufficiently
sensitive to the impact of SLP interventions. PROMS from the existing pool of
language (Quinting et al., 2018), voice (Francis et al., 2017) and dysphagia (Patel et
al., 2017) measures can be evaluated for their relevance and validity in assessing the
outcomes of SLP interventions in palliative and EOL care. Measures specific to
palliative and EOL care may need to be developed for further SLP-driven research. It
is also essential to confirm that any measures used can actually be sensitively and
appropriate administered with this group of people (Leslie et al., 2014).
Promotion of the SLP role in palliative care
122
Promotion of the SLP role in palliative care is essential to improve availability
and timely uptake of services. This thesis found that awareness of the SLP role by
other healthcare providers was perceived to be one of the major barriers to providing
optimal care. SLPs are not, however, alone in this. Other allied health professions,
such as occupational therapy, experience similar challenges relating to awareness of
their role (Eva & Morgan, 2018), and inadequate professional preparation in palliative
and EOL care (Hammill et al., 2014). Currow (2002) acknowledged that allied health
professionals are often not employed by specialist palliative care services and are
missing from the list of academic chairs of palliative care around Australia (Currow,
2002). Access to allied health professionals, following earlier screening to identify
emerging issues and engage with referral pathways is recommended for better quality
of life and functional outcomes for people with life-limiting illnesses (Eva & Morgan,
2018; Loughran et al., 2017). Medical palliative rehabilitation providers also report
similar issues with poor awareness of their services preventing timely provision of
multidisciplinary palliative rehabilitation (Loughran et al., 2017). This is embedded in
misconceptions about palliative care being primarily symptom management at the end
of life when all other treatment options have been exhausted; there is an erroneous
association with a loss of hope (Johnson et al., 2011). Studies with medical palliative
care providers have reported some of the same difficulties as those identified by SLPs
in this study, namely poor coordination and communication, and differing attitudes
and approaches amongst medical specialities to the care of people with life-limiting
illnesses (Johnson et al., 2011).
Collaboration with multidisciplinary colleagues
The natural implication of shared challenges is that SLPs and other allied
health professionals must work collaboratively with their medical and nursing
colleagues. Together we can increase discipline-specific profiles and develop
multidisciplinary service and research solutions to the barriers experienced by
palliative services in general. Additionally, the most effective advocacy for access to
allied health services is from our medical colleagues (Philip, 2015). Palliative Care
Australia (2012) emphasises models of care incorporating shared workforce roles,
interdependent ways of working and the sharing of information. The most effective
palliative care models are well coordinated, with good case management to promote
123
coordination and communication across multiple services (Luckett et al., 2014).
Johnson et al. (2011) recommend education to other health professionals and the
community, and in fact many of the community engagement strategies introduced in
Australia, such as the “Dying to talk” campaign have begun to change perceptions
about death and dying (Mills & Mills, 2016). Better access to allied health
professionals, and earlier screening to identify emerging issues and engage with
referral pathways is recommended for better quality of life and functional outcomes
(Eva & Morgan, 2018; Loughran et al., 2017; Philip, 2015). Allowing nursing and
allied health to refer to specialist palliative care has been suggested as a way of
overcoming hierarchical and bureaucratic access barriers (Johnson et al., 2011).
Ultimately, solutions must be multifactorial and collaborative.
Conclusion
The results of this thesis have addressed a number of questions regarding the
role of SLPs in palliative and EOL care. Specifically, it has appraised the literature
that describes the SLP role in palliative care and described the medico-legal and
ethical aspects of palliative dysphagia management to increase SLPs’ awareness of a
range of important issues. The nature of current SLP work in palliative and EOL care
has been explored and SLPs’ perceived ideal quality service has been established. It
has confirmed that a range of barriers contribute to less than optimal current practice,
and collected SLPs recommendations for improving clinical practice and patient care
to people whose care is palliative. Finally, this thesis has defined key expectations of
the role and practice of SLPs in palliative and EOL care, from the perspective of
practicing SLPs. Extensive opportunities exist for further research and development in
the area of palliative and EOL care, which will be most effectively achieved in
partnership with our allied health, medical and nursing colleagues.
124
References
125
REFERENCES
Abbot, M. L., & McKinney, J. (2013). Understanding and applying research design.
New York, NY: Wiley.
Ashby, M. A. & Mendelson, D. (2004). Gardner re BWV: Victorian Supreme Court
makes landmark Australian ruling on tube feeding. Medical Journal of
Australia. 181, 442-445.
Australian Commission on Safety and Quality in Health Care. (2015). National
consensus statement: Essential elements for safe and high-quality end-of-life
care. Sydney, Australia: ACSQHC. Retrieved from
https://www.safetyandquality.gov.au/wp-content/uploads/2015/05/National-
Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-
care.pdf.
Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.).
New York, NY: Oxford University Press.
Berquez, A. E., Cook, F. M., Millard, S. K. & Jarvis, E. (2011) The Stammering
Information Programme: A Delphi study. Journal of Fluency Disorders, 36:
206-221. doi: 10.1016/jfludis.2011.02.007
Bishop, D. V. M., Snowling, M. J., Thompson, P. A., Greenhalgh, T., & CATALISE
Consortium. (2016). CATALISE: A multinational and multidisciplinary
Delphi consensus study. Identifying language impairments in children. PLoS
ONE, 11(7), e0158753. doi:10.1371/journal.pone.0158753
Bishop, D. V. M., Snowling, M. J., Thompson, P. A., Greenhalgh, T., & CATALISE-
2 Consortium. (2017). Phase 2 of CATALISE: A multinational and
multidisciplinary Delphi consensus study of problems with language
development. Journal of Child Psychology & Psychiatry, 58(10): 1068-1080.
doi: 10.1111/jcpp.12721
Boa, S., Duncan, E. A. S., Haraldsdottir, E., & Wyke, S. (2014). Goal setting in
palliative care: A structured review. Progress in Palliative Care, 22(6), 326-
333. doi:10.1179/1743291x14y.0000000097
Bogaardt, H., Veerbeek, L., Kelly, K., van der Heide, A., van Zuylen, L., & Speyer,
R. (2015). Swallowing problems at the end of the palliative phase: incidence
126
and severity in 164 unsedated patients. Dysphagia, 30(2), 145-151.
doi:10.1007/s00455-014-9590-1
Bosma, H., Apland, L. & Kazanjian, A. (2010) Cultural conceptualisations of hospice
palliative care: more similarities than differences. Palliative Medicine, 24(5):
510-522. doi: 10.1177/0269216309351380
Brownlee, A., & Bruening, L. M. (2012). Methods of communication at end of life for
the person with amyotrophic lateral sclerosis. Topics in Language Disorders,
32(2), 168-185. doi:10.1097/TLD.0b013e31825616ef
Bryden, D. & Storey, I. (2011). Duty of care and medical negligence. Continuing
Education in Anaesthesia, Critical Care & Pain, 11(4): 124-127. doi:
10.1093/bjaceaccp/mkr016
Burke, J. G., O’Campo, P. O., L., P. G., Gielen, A. C., McDonnell, K. A., & Trochim,
W. M. K. (2005). An introduction to concept mapping as a participatory
public research method. Qualitative Health Research, 15(10), 1392-1410.
doi:10.1177/1049732305278876
Chahda, L., Mathisen, B. A., & Carey, L. B. (2017). The role of speech-language
pathologists in adult palliative care. International Journal of Speech-Language
Pathology, 19(1), 58-68. doi:10.1080/17549507.2016.1241301
Clark, J., Gardiner, C., & Barnes, A. (2016). International palliative care research in
the context of global development: A systematic mapping review. BMJ
Supportive & Palliative Care, 8(1), 7-18. doi:10.1136/bmjspcare-2015-
001008
Code, C., & Heron, C. (2003). Services for aphasia, other acquired adult neurogenic
communication and swallowing disorders in the United Kingdom, 2000.
Disability Rehabilitation, 25(21), 1231-1237.
doi:10.1080/09638280310001599961
Cohen, S. M., Elackattu, A., Noordzij, J. P., Walsh, M. J., & Langmore, S. E. (2009).
Palliative treatment of dysphonia and dysarthria. Otolaryngology Clinics of
North America, 42(1), 107-121, x. doi:10.1016/j.otc.2008.09.010
Collis, J., & Bloch, S. (2012). Survey of UK speech and language therapists’
assessment and treatment practices for people with progressive dysarthria.
International Journal of Language and Communication Disorders, 47(6), 725-
737. doi: 10.1111/j.1460-6984.2012.00183
127
Costello, J. M. (2009). Last words, last connections: How augmentative
communication can support children facing end of life. The ASHA
Leader(December), 8-11.
Curnow, K. (2014). A right to choose how to live: The Australian common law
position on refusals of care. Journal of Law and Medicine, 22: 398-414.
Currow, D. (2002). Australia: State of palliative service provision 2002. Journal of
Pain and Symptom Management, 24(2), 170-172. doi:10.1016/S0885-
3924(02)00448-7
Currow, D. C., & Phillips, J. (2013). Evolution of palliative care in Australia 1973-
2013. Cancer Forum, 37(1), 38-42.
Dart, R. C., Goldfrank, L. R., Chyka, P. A., D., L., Woolf, A. D., McNally, J., . . .
Lipsy, R. (2000). Combined evidence-based literature analysis and consensus
guidelines for stocking of emergency antidotes in the United States. Annals of
Emergency Medicine, 36(2), 126-132. doi:
10.1016/j.annemergmed.2017.05.021
de Vaus, D. (2014). Surveys in Social Research (6th ed.). Crows Nest, Australia:
Allen & Unwin.
Dietz, J. H. (1969). Rehabilitation of the cancer patient. Medical Clinics of North
America, 53(3), 410-419.
Donohoe, H., Stellefson, M., & Tennant, B. (2012). Advantages and limitation of the
e-Delphi techinique: Implications for health education researchers. American
Journal of Health Education, 43(1), 38-46. doi:
10.1080/19325037.2012.10599216
Du Mont, J., Kosa, D., Macdonald, S., Elliot, M. & Yaffe, M. (2015) Determining
possible professionals and respective roles and responsibiltieis for a model
comprehensive elder abuse intervention: A Delphi consensus survey. PLoS
ONE 10(12): e0140760. doi: 10.1371/journal.pone.0140760.
Eckman, S., & Roe, J. (2005). Speech and language therapists in palliative care: what
do we have to offer? International Journal of Palliative Nursing, 11(4), 179-
181. doi:10.12968/ijpn.2005.11.4.28783
Eva, G., & Morgan, D. (2018). Mapping the scope of occupational therapy practice in
palliative care: A European Association for Palliative Care cross-sectional
survey. Palliative Medicine, 32(5), 960-968. doi:10.1177/0269216318758928
128
Francis, D. O., Daniero, J. J., Hovis, K. L., Sathe, N., Jacobson, B., Penson, D. F., . . .
McPheeters, M. (2017). Voice-related patient-reported outcome measures: A
systematic review of instrumet development and validation. Journal of
Speech, Language and Hearing Research, 60(1), 62-88.
doi:10.1044/2016_JSLHR-S-16-0022
Freckelton, I. (2011). Patients’ decisions to diet: The emerging Australian
jurisprudence. Journal of Law and Medicine, 18, 427-438.
Frost, M. (2001). The role of physical, occupational, and speech therapy in hospice:
patient empowerment. American Journal of Hospice and Palliative Care,
18(6), 397-402. doi:10.1177/104990910101800609
Goy, E. R., Carter, J. H., & Ganzini, L. (2007). Parkinson disease at the end of life:
Caregiver perspectives. Neurology, 69, 611-612. doi:
10.1212/01.wnl.0000266665.82754.61
Groher, M. E., & Groher, T. (2012). When safe oral feeding is threatened: End of life
options and decisions. Topics in Language Disorders, 32(2), 149-167. doi:
10.1097/TLD.0b013e3182543547
Guthrie, S., Lancaster, J., & Stansfield, J. (2017). Consensus-building on developing
dysphagia comptence: A North West of England perspective. International
Journal of Language and Communication Disorders, 52(6), 845-869.
doi:10.1111/1460-6984.12321
Hammill, K., Bye, R., & Cook, C. (2014). Occupational therapy for people living
with a life-limiting illness: a thematic review. British Journal of Occupational
Therapy, 77(11), 582-589. doi:10.4276/030802214X14151078348594
Hammill, K., Bye, R., & Cook, C. (2017). Workforce profile of Australian
occupational therapises working with people who are terminally ill. Australian
Occupational Therapy Journal, 64, 58-67. doi:10.1111/1440-1630.12325
Hammill, K. A. (2014). A national survey of occupational therapists working with
people living with terminal illness: Profile, role, context and professional
reasoning challenges. (Doctoral Thesis), University of Western Sydney,
Australia. Retrieved from
https://researchdirect.westernsydney.edu.au/islandora/object/uws:32308
Available from Western Sydney University Research Direct database.
Hawksley, R., Ludlow, F., Buttimer, H., & Bloch, S. (2017). Communication
disorders in palliative care: Investigating the views, attitudes and beliefs of
129
speech and language therapists. International Journal of Palliative Nursing,
23(11), 543-551. doi:10.12968/ijpn.2017.23.11.543
Heyland, D. K., Dodek, P., Rocker, G., Groll, D., Gafni, A., Pichora, D., . . . Lam, M.
(2006). What matters most in end-of-life care: perceptions of seriously ill
patients and their family members. Canadian Medical Association Journal,
17(5), 627-633. doi:10.1503/cmaj.050626
Ho, A., Jameson, K. & Pavlish, C. (2016). An exploratory study of interprofessional
collaboration in end-of-life decision making beyond palliative care settings.
Journal of Interprofessional Care, 30(6): 795-803. doi:
10.1080/13561820.2016.1203765
Hutchings, A., Raine, R., Sanderson, C., & Black, N. (2006). A comparison of formal
consensus methods used for developing clinical guidelines. Journal of Health
Services Research and Policy, 11(4), 218-224. doi:
10.1258/135581906778476553
Javier, N. S., & Montagnini, M. L. (2011). Rehabilitation of the hospice and palliative
care patient. Journal of Palliative Medicine, 14(5), 638-648.
doi:10.1089/jpm.2010.0125
Johnson, C., Girgis, C., Paul, C., Currow, D. C., Adams, J., & Aranda, S. (2011).
Australian palliative care providers perceptions and experiences of the barriers
and facilitators to palliative care provision. Supportive Care in Cancer, 19(3),
343-351. doi:10.1007/s00520-010-0822-0
Keidel, G. C. (2002). Burnout and compassion fatigue amongst hospice caregivers.
American Journal of Hospice and Palliative Care, 19(3), 200-205.
doi:10.1177/104990910201900312
Kelly, K., Cumming, S., Corry, A., Gilsenan, K., Tamone, C., Vella, K., & Bogaardt,
H. (2016). The role of speech-language pathologists in palliative care: Where
are we now? A review of the literature. Progress in Palliative Care, 24(6),
315-323. doi:10.1080/09699260.2016.1141745
Kelly, K., Cumming, S., Kenny, B., Smith-Merry, J., & Bogaardt, H. (2018). Getting
comfortable with “comfort feeding”: An exploration of legal and ethical
aspects of the Australian speech-language pathologist’s role in palliative
dysphagia care. International Journal of Speech-Language Pathology, 20(3),
371-379. doi:10.1080/17549507.2018.1448895
130
Kerridge, I., Lowe, M., & Stewart, C. (2013). Ethics and law for the health
professions (4th ed.). Sydney, Australia: The Federation Press.
Krikheli, L., Carey, L. B., Mathisen, B. A., Erickson, S., & Carey-Sargeant, C. L.
(2018). Speech-language pathologists in paediatric palliative care: A Delphi
study protocol. BMJ Supportive and Palliative Care, (Early Online), 1-7.
doi:10.1136/bmjspcare-2018-001667
Krikheli, L., Mathisen, B. A., & Carey, L. B. (2017). Speech-language pathology in
paediatric palliative care: A scoping review of role and practice. International
Journal of Speech-Language Pathology, (Early Online), 1-13.
doi:10.1080/17549507.2017.1337225
Kumar, S. P., & Jim, A. (2010). Physical therapy in palliative care: From symptom
control to quality of life: A critical review. Indian Journal of Palliative Care,
16(3), 138-146. doi:10.4103/0973-1075.73670
Kummer, A. W., & Turner, J. (2011). Ethics in the practice of speech-language
pathology in health care settings. Seminars in Speech and Language, 32(4),
330-337. doi:10.1055/s-0031-1292758
Lambert, H. (2012). The allied health care professionalʼs role in assisting medical
decision making at the end of life. Topics in Language Disorders, 32(2), 119-
136. doi:10.1097/TLD.0b013e318254d321
Leslie, P., Sandsund, C., & Roe, J. (2014). Researching the rehabilitation needs of
patients with life-limiting disease: Challenges and opportunities. Progress in
Palliative Care, 22(6), 313-318. doi:10.1179/1743291x14y.0000000087
Linstone, H. A., & Turoff, M. (1975). The Delphi method: techiniques and
applications. Reading, Massachusetts: Addison-Wesley Publishing Company.
Lobb, E. A., Oldham, L., Vojkovic, S., Kristjanson, L. J., Smith, J., Brown, J. M., &
Dwyer, V. W. J. (2010). Frontline grief: The workplace support needs of
community palliative care nurses after the death of a patient. Journal of
Hospice and Palliative Care Nursing, 12, 225-233.
doi:10.1097/NHJ.0b013e3181dceadc
Lombard, J. (2018). Law, palliative care and dying. doi: 10.4324/9781315179568
Loughran, K., Rice, S., & Robinson, L. (2017). Living with incurable cancer: what
are the rehabilitation needs in a palliative setting? Disability and
Rehabilitation, Online. doi:10.1080/09638288.2017.1408709
131
Luckett, T., Phillips, J., Agar, M., Virdun, C., Green, A., & Davidson, P. M. (2014).
Elements of effective palliative care models: A rapid review. BMC Health
Services Research, 14(1), 136-158. doi:10.1186/1472-6963-14-136
Lynch, T., Connor, S., & Clark, D. (2013). Mapping levels of palliative care
development: A global update. Journal of Pain and Symptom Management,
45(6), 1094-1106. doi:10.1016/jpainsymman.2012.05.011
Mathisen, B., Yates, P., & Crofts, P. (2011). Palliative care curriculum for speech-
language pathology students. International Journal of Language &
Communication Disorders, 46(3), 273-285.
doi:10.3109/13682822.2010.495739
McIlwraith, J. & Madden, B. (2010). Health care and the law. Pyrmont, Australia:
Thomson Reuters (Professional) Australia.
Melo, C. G., & Oliver, D. (2011). Can addressing death anxiety reduce health care
workers’ burnout and improve care? Journal of Palliative Care, 27(4), 287-
295. doi: 10.1177/082585971102700405
Michels, C. T. J., Boulton, M., Adams, A., Wee, B., & Peters, M. (2016).
Psychometric properties of carer-reported outcome measures in palliative care:
A systematic review. Palliative Medicine, 30(1), 23-44.
doi:10.1177/0269216315601930
Mills, S., & Mills, J. (2016). Future directions for community engagement as a public
health approach to palliative care in Australia. Progress in Palliative Care,
24(1), 15-18. doi:10.1179/1743291X15Y.0000000012
Mitchell, R. B., Hussey, H. M., Setzen, G., Jacobs, I. N., Nussenbaum, B., Dawson,
C., & Brown, C. A. (2012). Clinical consensus statement: tracheostomy care.
Otolaryngology - Head and Neck Surgery, 148(1), 6-20. doi:
10.1177/0194599812460376
Murray Frommelt, K. H. (2003). Attitudes toward care of the terminally ill: An
education intervention. American Journal of Hospice & Palliative Care, 20,
(1). doi:10.1177/104990910302000108
Nancarrow, S. A, Booth, A., Ariss, S., Smith, T., Enderby, P. & Roots, A. (2013). Ten
principles of good interdisciplinary team work. Human Resources for Health.
11(1). 19-30. doi: 10.1186/1478-4491-11-19
Nair, R., Aggarwal, R., & Khanna, D. (2011). Methods of formal consensus in
classification/diagnostic criteria and guideline development. Seminars in
132
Arthritis and Rheumatology, 41(2), 95-105.
doi:10.1016/j.semarthrit.2010.12.001
O'Halloran, R., Worrall, L., & Hickson, L. (2012). Stroke patients communicating
their healthcare needs in hospital: a study within the ICF framework.
International Journal of Language & Communication Disorders, 47(2), 130-
143. doi:10.1111/j.1460-6984.2011.00077.x
Oishi, A. & Murtagh, F. E. M. (2014). The challenges of uncertainty and
interprofessional collaboration in palliative care for non-cancer patients in the
community: A systematic review of views from patients, carers and health-
care professionals. Palliative Medicine, 28(9): 1081-1098. doi:
10.1177/0269216314531999
Okamura, H. (2011). Importance of rehabiliation in cancer treatment and palliative
medicine. Japanese Journal of Clinical Oncology, 41(6), 733-738.
doi:10.1093/jjco/hyr061
O'Reilly, A. C., & Walshe, M. (2015). Perspectives on the role of the speech and
language therapist in palliative care: An international survey. Palliative
Medicine, 29(8), 756-761. doi:10.1177/0269216315575678
Palliative Care Australia. (2012). Submission to the Australian Senate Standing
Committee on Community Affairs inquiry into palliative care in Australia.
Retrieved from http://palliativecare.org.au/wp-
content/uploads/dlm_uploads/2015/04/PCAs-Submission-to-Senate-Inquiry-
into-Palliative-Care-in-Australia-Final.pdf
Palliative Care Australia. (n.d.). Understanding palliative care. Retrieved from
http://palliativecare.org.au/understanding-palliative-care-parent-
menu/understanding-palliative-care
Palliative Care Outcomes Collaboration. (2014). Phase definitions. Retrieved from
https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documen
ts/doc/uow222232.pdf
Pascoe, A., Breen, L. J., & Cocks, N. (2015). Being Prepared for Working in
Palliative Care. The Speech Pathology Perspective. Journal of Clinical
Practice in Speech-Language Pathology, 17(2), 82-84.
Pascoe, A., Breen, L. J., & Cocks, N. (2018). What is needed to prepare speech
pathologists to work in adult palliative care? International Journal of
133
Language & Communication Disorders, 53(3), 542-549. doi:10.1111/1460-
6984.12367
Patel, D. A., Sharda, R., Hovis, K. L., Nichols, E. E., Sathe, N., Penson, D. F., Feurer,
I. D., McPheeters, M. L., Vaezi, M. F. & Francis, D. O. (2017). Patient-
reported outcome measures in dysphagia: A systematic review of instrument
development and validation. Diseases of the Esophagus, 30(5), 1-23.
doi:10.1093/dote/dow028
Payne, C. (2015). Managing anorexia in advanced progressive illness: The case for
palliative rehabilitation. International Journal of Therapy and Rehabilitation,
22(3), 106-107. doi: 10.12968/ijtr.2015.22.3.106
Payne, C., McIlfatrick, S., Larkin, P., Dunwoody, L., & Gracey, J. (2018). A
qualitative exploration of patient and healthcare professionals’ view and
experiences of palliative rehabilitation during advanced lung cancer treatment.
Palliative Medicine, Online, 1-9. doi:10.1177/0269216318794086
Philip, K. (2015). Allied health: Untapped potential in the Australian health system.
Australian Health Review, 39(3), 244-247. doi:10.1071/AH14194
Pigeon, T. M., Johnson, C. E., Lester, L., Currow, D., Yates, P., Allingham, S. F., . . .
Eagar, K. (2018). Perceptions of the care received from Australian palliative
care services: A caregiver perspective. Palliative and Supportive Care, 16(2),
198-208. doi:10.1017/S1478951517000177
Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care.
Journal of Palliative Medicine, 7(5), 694-702. doi:10.1089/jpm.2004.7.694
Pollens, R. D. (2012). Integrating Speech-Language Pathology Services in Palliative
End-of-Life Care. Topics in Language Disorders, 32(2), 137-148.
doi:10.1097/TLD.0b013e3182543533
Power, E., Thomas, E., Worrall, L., Rose, M., Togher, L., Nickels, L., Hersh, D.,
Godecke, E., O’Halloran, R., Lamont, S., O’Conner, C. & Clarke, K. (2015).
Development and validation of Australian aphasia rehabilitation best practice
statements using the RAND/UCLA appropriateness method. BMJ Open, 5(7),
e007641. doi:10.1136/bmjopen-2015-007641
Public Health Agency. (2018). Management of symptoms in palliative care: The role
of specialist palliative care Allied Health professionals. Retrieved from
Belfast, Northern Ireland:
http://www.professionalpalliativehub.com/sites/default/files/Management of
134
Symptoms in Palliative Care - The Role of Specialist Care Allied Health
Professionals.pdf
Quinting, J., de Beer, C., Rosenkranz, A., Jonas, K., Stenneken, P., & Neumann, S.
(2018). What do we measure when we assess communication-related quality
of life in people with aphasia? Aphasiology, 32(sup 1), 169-171.
doi:10.1080/02687038.2018.1486388
Regnard, C., Mathews, D., Gibson, L., & Clarke, C. (2003). Difficulties in identifying
distress and its causes in people with severe communication problems.
International Journal of Palliative Nursing, 9(4), 173-176.
Rivers, K. O., Perkins, R. A., & Carson, C. P. (2009). Perceptions of speech-
pathology and audiology students concerning death and dying: a preliminary
study. International Journal of Language and Communication Disorders,
44(1), 98 - 111. doi:10.1080/13682820701778135
Roe, J. W., & Leslie, P. (2010). Beginning of the end? Ending the therapeutic
relationship in palliative care. International Journal of Speech-Language
Pathology, 12(4), 304-308; discussion 329-332.
doi:10.3109/17549507.2010.485330
Roe, J. W., Leslie, P., & Drinnan, M. J. (2007). Oropharyngeal dysphagia: the
experience of patients with non-head and neck cancers receiving specialist
palliative care. Palliat Med, 21(7), 567-574. doi:10.1177/0269216307082656
Salins, N., Ramanjulu, R., Patra, L., Deodhar, J., & Muckaden, M. (2016). Integration
of early specialist palliative care in cancer care and patient related outcomes:
A critical review of the evidence. Indian Journal of Palliative Care, 22(3),
252-257. doi:10.4103/0973-1075.185028
Salt, N., Davies, S., & Wilkinson, S. (1999). The contribution of speech and language
therapy to palliative care. European Journal of Palliative Care, 6(4), 126-129.
Salt, N., & Robertson, S. J. (1998). A hidden client group? Communication
impairment in hospice patients. International Journal of Language and
Communication Disorders, 33(Supplement), 96-101. doi:
10.3109/13682829809179404
Schaffalitzky, E., Leahy, D., Cullen, W., Gavin, B., Latham, L., O’Connor, R.,
Smyth, B. P., O’Dea, E. & Ryan, S. (2015). Youth mental health in deprived
urban areas: A Delphi study on the role of the GP in early intervention. Irish
Journal of Medical Science. 184: 831-843. doi: 10.1007/s11845-014-1187-z
135
Scheinich, M. A., Warren, S., Nekolaichuk, C., Kassa, T., & Watanabe, S. (2008).
Palliative care rehabilitation survey: a pilot study of patients’ priorities for
rehabilitation goals. Palliative Medicine, 22, 822-830.
doi:10.1177/0269216308096526
Sharp, H. M., & Bryant, K. N. (2003). Ethical issues in dysphagia: When patients
refuse assessment or treatment. Seminars in Speech and Language, 24(4), 285-
299. doi:10.1055/s-2004-815578
Smith, H., Muller, N., & Bradd, T. (2011). Dysphagia assessment and management at
the end of life: Some ethical considerations. ACQuring Knowledge in Speech,
Language and Hearing, 13(2), 88-91.
Speech Pathology Australia. (2010). Code of Ethics. Retrieved from
http://www.speechpathologyaustralia.org.au/library/Ethics/CodeofEthics.pdf
Speech Pathology Australia. (2015). Scope of practice in Speech Pathology. Retrieved
from
https://www.speechpathologyaustralia.org.au/spaweb/Document_Management
/Public/SPA_Documents.aspx - anchor_scope
Stewart, C., Kerridge, I. & Parker, M. (2008) The Australian medico-legal handbook.
Marrickville, Australia: Churchill Livingstone Elsevier.
St Pierre, A. E., Reelie, B. A., Dolan, A. R., Stokes, R. H., Duivestein, J. A., & Holsti,
L. (2012). Terms used to describe pediatric videofluoroscopic feeding studies:
a Delphi survey. Canadian Journal of Occupational Therapy, 79(3), 159-166.
doi:10.2182/cjot.2012.79.3.5
Survey Monkey. (2015). Palo Alto, California: SurveyMonkey.com, LLC. Retrieved
from http://www.surveymonkey.com
Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E., Admane, S., Jackson, V. A.,
Dahlin, C. D., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A. &
Lynch, T. J. (2010). Early palliative care for patients with metastatic non-
small-cell lung cancer. New England Journal of Medicine, 363(8), 733-742.
doi:10.1056/NEJMoa1000678
Toner, M. A., & Shadden, B. B. (2012). End of life. Topics in Language Disorders,
32(2), 111-118. doi:10.1097/TLD.0b013e31825484e0
Tuffrey-Winjne, I., & McEnhill, L. (2008). Communication difficulties and
intellectual disability in end-of-life care. International Journal of Palliative
Nursing, 14(4), 189-194. doi: 10.12968/ijpn.2008.14.4.29133
136
Visser-Bochane, M. I., Gerrits, E., van der Schans, C. P., Raineveld, S. A. & Luinge,
M. R. (2017) Atypical speech and language development: A consensus study
on clinical signs in the Netherlands. International Journal of Language &
Communication Disorders, 52(1): 10-20. doi: 10.1111/1460-6984.12251
Viviers, M., Kritzinger, A., & Vinck, B. (2016). Development of a clinical feeding
assessment scale for very young infants in South Africa. South African
Journal of Communciation Disorders, 63(1), a148.
doi:10.4102/sajcd.v63i1.148
Wainwright, P., Gallagher, A., Tompsett, H., & Atkins, C. (2010). The use of
vignettes within a Delphi exercise: a useful approach in empirical ethics?
Journal of Medical Ethics, 36, 656-660. doi: 10.1136/jme.2010.036616
Wallace, S. J., Worrall, L., Rose, T., & Le Dorze, G. (2016). Core outcomes in
aphasia treatment research: An e-Delphi consensus study of international
aphasia researchers. American Journal of Speech-Language Pathology,
25(Supplement), S729-S742. doi:10.1044/2016_AJSLP-15-0150
Wallace, S. J., Worrall, L., Rose, T., & Le Dorze, G. (2017). Which treatment
outcomes are most important to aphasia clinicians and managers? An
international e-Delphi consensus study. Aphasiology, 31(6), 643-673.
doi:10.1080/02687038.2016.1186265
Waltz, T. J., Powell, B. J., Chinman, M. J., Smith, J. L., Matthieu, M. M., Proctor, E.
K., Damschroder, L. J. & Kirchner, J. A. (2014). Expert recommedations for
implementing change (ERIC): protocol for a mixed methods study.
Implementation Science, 9(1), 39-51. doi:10.1186/1748-5908-9-39
Wheeldon, J., & Faubert, J. (2009). Framing experience: Concept maps, mind maps
and data collection in qualitative research. International Journal of Qualitative
Methods, 8(3), 68-83. doi:10.1177/160940690900800307
Wilmott, L., White, B., Smith, M. K. & Wilkinson, D. J. (2014) Withholding and
withdrawing life-sustaining treatment in a patient’s best interests: Australian
judicial deliberations. Medical Journal of Australia, 201, 545-547. doi:
10.5694/mja13.10874
White, B. P., Willmott, L., & Ashby, M. (2011). Palliative care, double effect and the
law in Australia. Internal Medicine Journal, 41(6), 485-492.
doi:10.1111/j.1445-5994.2011.02511.x
137
White, B., Wilmott, L. & Savalescu, J. (2014). Voluntary palliated starvation: A
lawful and ethical way to die? Journal of Law and Medicine, 22: 376-386.
Williams DCJ. (2013). D Lane v Northern NSW Local Health District; E Lange v
Northern NSW Local Health District [2013] NSWDC 12. Retrieved from
http://www6.austlii.edu.au/cgi-
bin/viewdoc/au/cases/nsw/NSWDC/2013/12.html
Williamson, P. R., Altman, D. G., Blazeby, J. M., Clarke, M., Devane, D., Gargon, E.,
& Tugwell, P. (2012). Developing core outcome sets for clinical trials: issues
to consider. Trials, 13(1), 132. doi:10.1186/1745-6215-13-132
Wittry, S. A., Lam, N., & McNalley, T. (2018). The value of rehabilitation medicine
for patients receiving palliative care. American Journal of Hospice and
Palliative Medicine, 35(6), 889-896. doi:10.1177/1049909117742896
World Health Organisation. (2014). Global atlas of palliative care and the end of life.
Retrieved from
https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf
World Health Organisation. (2018, 19 February 2018). Palliative care. Retrieved
from http://www.who.int/news-room/fact-sheets/detail/palliative-care
Yamada, S. & Ota, K. (2012). Essential roles of clinical nurse intstructions in Japan:
A Delphi study. Nursing & Health Sciences. 14:229-237. doi: 10.1111/j.1442-
2018.2012.00683.x
Zimmerman, C., Riechelmann, R., Krzyzanowska, M., Rodin, G., & Tannock, I.
(2008). Effectiveness of specialised palliative care: A systematic review.
Journal of the American Medical Association, 299(14), 1698-1709. doi:
10.1001/jama.299.14.1698
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Appendices
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APPENDIX 1: QUESTIONNAIRE – ROUND 1
1) How many years have you been working as a Speech Pathologist?
o Less than 1 year o 1 year o 2-5 years o 5-10 years o 10 years +
2) What age group do you work with?
o Paediatrics o Adults o Both
3) What setting do you work in?
o Inpatient o Outpatient o Community o Mixed caseload, please specify;
___________________________________________________
4) What location are you working in? o Metro o Regional o Rural
5) If in Australia, which state/territory do you practice in?
o NSW o ACT o QLD o SA o NT o WA o TAS o VIC
6) If outside Australia, in which country do you work?
(Free text response)
7) Do you practice in a public or private setting? o Public o Private o Both, please specify;
______________________________________________________
8) In which settings do you offer services to patients who are palliative:
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• Inpatient o Acute o Subacute/Rehab o Palliative care unit/hospice
• Outpatient o Centre based o Home visiting o Nursing home visiting
9) How much time would you routinely spend per week with patients whose care
is palliative? o None o 1-3 hours o 3-8 hours o 1 day o 2 days o 3-4 days o Full time
10) Does your service have a dedicated Speech Pathologist allocated to a palliative
care caseload? o Yes o No
11) Are you specifically allocated to a palliative care caseload?
o Yes o No
12) Does your service have a funded palliative care position, if yes, what FTE?
o Yes: ______ o No
13) Considering the patients you typically see who fit the palliative definition
above, how frequently do you provide the following (Always, Frequently, Sometimes, Rarely, Never):
o Informal communication assessment o Formal communication assessment o Communication therapy o Communication partner education o AAC o Tracheostomy management o Clinical (bedside) swallowing assessments o Instrumental swallowing assessments (e.g. MBS/FEES) o Swallowing therapy o Compensatory swallowing strategies (e.g. chin tuck, head turn, altered
feeding rate, bolus size) o Safe swallowing positioning recommendations o Diet modification recommendations
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o Fluid texture modification recommendations o Oral care recommendations o Oral stimulation/tastes for comfort (in absence of actually swallowing
a bolus) o Education on dysphagia and risks of aspiration (to patient and family) o Education on changes to eating and drinking and communicating at the
end of life (to patient and family) o Information/education on how to manage a choking episode o Participation in patient, family, multidisciplinary team
discussions/decisions about quality of life o Information about how the patient’s communication impairments
influence their capacity for informed decision making o Helping patients to develop/write advanced care directives o Other: specify________________________________
14) What is the predominant form of your intervention during each palliative
phase (Stable, Deteriorating, Terminal, Bereavement/post death support): o Assessment + education/strategies o Assessment + education/strategies + a short period of therapeutic
intervention (less than 4 sessions) o Assessment + education/strategies + a longer period of therapeutic
intervention (more than 4 sessions) o Other: ______________
15) What is the frequency of your intervention during each of the palliative phases
(Stable, Deteriorating, Terminal, Bereavement/post death support)?
o The patient is reviewed only when requested by the patient, family or a member of the multidisciplinary team
o Patients are seen on a regular basis to monitor for changes o None o Other: ___________________________________________
16) Rate your knowledge of:
a. The process of normal dying:
o Very knowledgeable o Reasonably knowledgeable o Some knowledge o Limited knowledge o No knowledge
b. Advanced care planning:
o Very knowledgeable o Reasonably knowledgeable o Some knowledge o Limited knowledge o No knowledge
17) How confident are you in working with patients who are palliative?
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o Very confident o Reasonably confident o Somewhat confident o A little bit confident o Not confident
18) Please name any guidelines or legislation you use in making decisions that
may hasten a person’s decline (e.g. supporting the patient to have thin fluids even with a very high risk of aspiration):
(Free text response)
19) 19) Please name any personal or professional ethical principles you draw on in
making decisions that may hasten a person’s decline (e.g. supporting the patient to have thin fluids even with a very high risk of aspiration):
(Free text response)
19) Who has the final legal responsibility/governance in your team regarding
decisions that may hasten a person’s decline (e.g. supporting the patient to have thin fluids even with a very high risk of aspiration) • The Speech Pathologist • The managing Doctor • Nurses caring for the patient • Not sure
20) Which have been the most useful means developing your skills in managing patients who are palliative?
Rank in order for those that apply (N/A for those that do not):
o Specific training at university
o Specific supervision/teaching from a clinical supervisor o Exposure to a palliative care team o Learning through experience o Learning from a colleague o Independent reading o Peer support/ peer supervision arrangements o Attending courses o Other, please specify ____________________________
21) What do you believe Speech Pathologists should ideally be doing for patients
whose care is palliative (Always, Frequently, Sometimes, Rarely, Never)? o Informal communication assessment o Formal communication assessment o Communication therapy
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o Communication partner education o AAC o Tracheostomy management o Clinical (bedside) swallowing assessments o Instrumental swallowing assessments (e.g. MBS/FEES) o Swallowing therapy o Compensatory swallowing strategies (e.g. chin tuck, head turn,
altered feeding rate, bolus size) o Safe swallowing positioning recommendations o Diet modification recommendations o Fluid texture modification recommendations o Oral care recommendations o Oral stimulation/tastes for comfort (in absence of actually
swallowing a bolus) o Education on dysphagia and risks of aspiration (to patient and
family) o Education on changes to eating and drinking and communicating at
the end of life (to patient and family) o Information/education on how to manage a choking episode o Participation in patient, family, multidisciplinary team
discussions/decisions about quality of life o Information about how the patient’s communication impairments
influence their capacity for informed decision making o Helping patients to develop/write advanced care directives o Other: specify________________________________
22) How much do the following impact on your ability to provide what you
believe to be an optimal service to patients whose care is palliative (Extremely/Very/Somewhat/Slightly/Not at all)?
o The confronting nature of working with death and dying/grief and
loss o Grieving for patients who are dying/have died o Burnout o Amount of exposure to patients who are palliative o Extent of knowledge of the nature of death and dying o Degree of clarity of the role boundaries of Speech Pathologists in
Palliative o Ability to determine appropriate Speech Pathology goals in the
context of palliative management o Knowledge of when to end the episode of care and discharge the
patient o Ability to talk to patients about what will happen as they
deteriorate o Ability to document recommendations that are made from a quality
of life perspective o Availability of specific professional development in this area o Access to specific professional development in this area o Evidence in the literature defining Speech Pathology best practice
in palliative care
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o Access to clinical supervision specifically related to palliative care o Frequency of referral to Speech Pathology o Timing of referral to Speech Pathology o The way in which palliative patients are prioritised within your
Speech Pathology service o Clarity of goals of care for the overall management of the patient o Consistency between medical specialities in management of
patients who are palliative o Ability to provide continuity of care between inpatient,
community, nursing home settings o Communication of patients’ wishes and goals of care between
hospital admissions o Allocated/funded staffing levels for Speech Pathology in palliative
care o Patients/family’s understanding of the Speech Pathology role o Other professionals’ understanding of the Speech Pathology role o Legal and ethical considerations o Other: specify_____________________________
23) What would assist you to better manage patients who are palliative? Choose
the three most important and rank in order.
o Resources and strategies for self-care (managing the emotional and psychological impact on yourself)
o A palliative care interest group o Better evidence in the literature to guide best practice o Professional development courses o Specific clinical supervision related to palliative care o Peer supervision arrangements with Speech Pathologists who work
in palliative care o More specifically funded Speech Pathology positions for palliative
care o Greater flexibility to provide continuous care across service
settings (e.g. inpatient, outpatient) o Greater awareness of the Speech Pathology role by
patients/families o Greater awareness of the Speech Pathology role by other health
professionals o Changes to clinical prioritisation guidelines. o More specific undergraduate training related to palliative care o Specific training for newly practicing Speech Pathologists in
palliative care o Clinical competencies for Speech Pathologist working with
patients who are palliative o Other: specify______________ o Other: specify o Other: specify
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26) Would you like to receive information on the results of this study? o Yes o No
27) Would you be prepared to answer a short follow-up survey?
o Yes o No
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APPENDIX 2: ELECTRONIC INVITATION TO PARTICIPATE – ROUND 1 Speech Pathologists from South West Sydney Local Health District and the University of Sydney are researching Speech Pathologists’ opinions on their role and experiences in palliative care. This research is intended to answer questions that have arisen from clinical practice, and is also a Masters degree project. For the purposes of this research, palliative care is defined as:
• Care that focuses on the relief of symptoms and other problems associated with life-limiting illness. It is not limited to care of the dying and may be useful well in advance of a patient’s death (Australian Commission on Safety and Quality in Healthcare, 2014).
• An approach that improves quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (World Health Organisation, 2014).
You are invited to participate in this research if you are currently practicing as a Speech Pathologist anywhere in the world. If you are interested in participating, please follow the link below to find out more information and to complete a short questionnaire. It is anticipated that this will only take around 15-20 minutes. <Survey Monkey link > We would like as many people as possible to participate, so please forward this invitation to anyone you think might be interested. Thank you for taking the time to participate. As a thank you, everyone who completes this survey and leaves an email address will go into a draw to win a $50 Visa gift card. Regards, The South West Sydney Local Health District Speech Pathology Palliative Care Working Party: Katherine Kelly, Anna Corry, Kerry Gilsenan, Claire Tamone and Kylie Vella (South West Sydney Local Health District) Supervisors: Steve Cumming and Hans Bogaardt (The University of Sydney)
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APPENDIX 3: PARTICIPANT INFORMATION STATEMENT & INFORMED CONSENT – ROUND 1
(1) What is this study about? Speech Pathologists have an important role to play in managing swallowing and communication difficulties that arise when people have a range of life-limiting illnesses. Many authors have written about the nature of the Speech Pathology role, but it is not clear whether this is occurring in everyday practice. The aims of this study are to: • Compare current Speech Pathology practice in palliative care with the role outlined in the literature. • Explore and reach consensus on the role that practicing Speech Pathologists see for themselves in palliative care. • Explore the barriers to achieving optimal Speech Pathology practice in palliative care and determine actions required to address them. This study adopts the definitions of palliative care put forth by the Australian Commission on Safety and Quality in Healthcare and the World Health Organisation. The Australian Commission on Safety and Quality in Healthcare defines it as care that focuses on the relief of symptoms and other problems associated with life-limiting illness. It is not limited to care of the dying and may be useful well in advance of a patient’s death. The primary goals are to improve quality of life, optimize comfort and dignity and provide support to the patient, their family and carers (Australian Commission on Safety and Quality in Healthcare, 2014). The World Health Organisation defines palliative care as “an approach that improves quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (World Health Organisation, 2014)
The study involves the completion of an anonymous online survey. No identifying personal details will be collected and your responses are kept anonymous. The survey questions will cover a range of related topics including data on your current work arrangements; services provided to palliative care patients and your experiences and opinions with respect to working with palliative patients.
(2) How much of my time will the study take? It is estimated that the survey will take around 15-20 minutes to complete.
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(3) Do I have to be in the study? Can I withdraw from the study once I've started? Being in this study is completely voluntary and you are not under any obligation to consent to complete the survey. Submitting a completed survey is an indication of your consent to participate in the study. You can withdraw any time prior to submitting your completed survey. Once you have submitted your survey anonymously, your responses cannot be withdrawn. (4) Are there any risks or costs associated with being in the study? We anticipate that giving up your time is likely to be the only cost associated with participation. This survey does discuss working with death and people who are dying, which may be distressing for some. If you experience any distress, please seek appropriate psychological/emotional support. Examples of appropriate services include: The Employee Assistance Program provided by your employer Beyond Blue Ph: 1300 22 4636 (24 Hours / 7 days per week) www.beyondblue.org.au Lifeline Ph: 13 11 14 www.lifeline.org.au (5) Are there any benefits associated with being in the study? All participants have the opportunity to win a $50 Visa Gift Card in a prize draw. You have the option of providing your name and contact details at the end of the survey if you are interested in being included in the prize draw. Your name and contact details, stored separately from the survey data, will be used only to contact you if you have won a prize. The prize draw will be drawn on 31st January 2016 and the prize-winner will be contacted by email. (6) What will happen to my responses that are collected during the study? By providing your consent, you are agreeing to us collecting personal information about you for the purposes of this research study. Your information will only be used for the purposes outlined in this Participant Information Statement, unless you
149
consent otherwise. (7) Can I tell other people about the study? Yes, you are welcome to tell other people about the study. (8) What if I would like further information about the study? If you would like to know more at any stage, please feel free to contact Katherine Kelly, South West Sydney Local Health District, Ph: +61 2 4634 3888, Email: [email protected] (9) Will I be told the results of the study? You have a right to receive feedback about the overall results of this study. You can tell us that you wish to receive feedback, and if you are interested in being contacted for future studies by providing your name and contact details at the end of the survey. Your details will be stored separately from the survey data. Feedback will be in the form of a one page lay summary. You will receive this feedback after the study is completed. (10) What if I have a complaint or any concerns about the study? If you are concerned about the way this study is being conducted or you wish to make a complaint to someone independent from the study, please contact South West Sydney Local Health District Research and Ethics Office using the details outlined below. Please quote the study title and protocol number. The Manager, Research and Ethics Office South West Sydney Local Health District Telephone: +61 2 8738 8304 Email: [email protected] Fax: +61 2 8738 8310
Begin the survey by clicking the box below:
I consent to participant in this study.
I don't agree to participate in this study.
(Adapted from a form developed by A/Prof Chin-Moi Chow, Faculty of Health Sciences, University of Sydney)
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APPENDIX 4: QUESTIONNAIRE – ROUND 2
Demographic Information 1) Are you:
• Female • Male
2) Please specify your age:
Free text
3) How many years have you been working as a Speech Pathologist? • Less than 1 year • 1 year • 2-5 years • 5-10 years • 10 years +
4) How many years have you been providing Speech Pathology care in a palliative
framework to people with life-limiting illnesses? • Less than 1 year • 1 year • 2-5 years • 5-10 years • 10 years +
5) What age group do you work with?
• Paediatrics • Adults • Both
6) What setting do you work in?
• Inpatient • Outpatient • Community • Mixed caseload, please specify;
___________________________________________________ 7) What location are you working in?
• Metro • Regional • Rural
8) If in Australia, which state/territory do you practice in?
• NSW
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• ACT • VIC • QLD • SA • NT • WA • TAS
9) If outside Australia, in which country do you work?
(Free text response)
10) Do you practice in a public or private setting? • Public • Private • Both, please specify;
______________________________________________________ 11) In which settings do you offer services to patients who are palliative:
• Inpatient a. Acute b. Subacute/Rehab c. Palliative care unit/hospice
• Outpatient a. Centre based b. Home visiting c. Nursing home visiting
12) How much time would you routinely spend per week with patients whose care is
palliative? • None • 1-3 hours • 3-8 hours • 1 day • 2 days • 3-4 days • Full time
13) Does your service have a dedicated Speech Pathologist allocated to a palliative
care caseload? • Yes • No
14) Are you specifically allocated to a palliative care caseload?
• Yes • No
15) Does your service have a funded palliative care position, if yes, what FTE?
• Yes: ______
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• No
Consensus Statements Speech Pathologists work within a multidisciplinary team, coordinated by a medical professional, to provide quality palliative care for patients who have life-limiting illnesses with swallowing and/or communication impairments. The following consensus statements relate to palliative Speech Pathology care for people with life-limiting illnesses. For brevity, they are subsequently referred to in this document as “people” or “all people”. Please:
• Rate your level of agreement with each statement. (1 = completely disagree; 9 = completely agree).
• Provide your feedback on how each statement could be improved (if relevant).
1 Service Provision 1.1 All people with life-limiting illnesses should have access to Speech-Language Pathology if indicated (i.e. they develop swallowing and/or communication impairments).
Completely Disagree Completely Agree
1 2 3 4 5 6 7 8 9 Comments/Suggestions:
2 Communication
2.1 All people referred to Speech-Language Pathology should have (at least) informal commentary made on their communication skills.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
2.2 All people referred to Speech-Language Pathology found to have a communication impairment, and their carers, should be offered:
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o Communication strategies o Communication partner training o Advice and counselling about appropriate alternative and augmentative
communication options Where appropriate, communication therapy and related psychosocial support should be offered (with consideration of diagnosis, prognosis, goals of care and patient wishes).
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
2.3 Speech-Language Pathology findings regarding a person’s communication skills will help determine a person’s capacity for informed/independent decision making.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
3 Swallowing
3.1 All people referred to Speech-Language Pathology and found to have a swallowing impairment, and their carers, should be offered:
o Safe swallowing strategies o Oral care information o Information and counselling about dysphagia, risks of aspiration/choking,
whether there are specific means by which these risks can be mitigated and potential consequences, in order to make informed decisions about consumption of oral foods/fluids.
Where appropriate, swallowing therapy should be offered (with consideration of diagnosis, prognosis, goals of care and patient wishes).
Completely Disagree Completely Agree
1 2 3 4 5 6 7 8 9 Comments/Suggestions:
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3.2 People with swallowing impairments should be offered the full range of assessments and interventions (e.g. videofluoroscopic swallowing studies) suitable for their clinical conditions and goals of care if they will constructively influence their management.
Completely Disagree Completely Agree
1 2 3 4 5 6 7 8 9 Comments/Suggestions:
3.3 Conversely, specific swallowing assessments or interventions should be appropriately withheld if considered futile or will cause undue distress or harm.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
3.4 Patients/substitute decision makers should be supported to make decisions about quality of life eating and drinking choices for themselves. These should be fully informed decisions supported by adequate information about expected swallowing changes, prognosis and the implications of such decisions. Speech Pathologists can provide this information.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
3.5 People who have accepted risk and continue on oral intake on which there is a risk of aspiration should continue to have access to Speech-Language Pathology reviews as required/appropriate.
Completely Disagree Completely Agree
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1 2 3 4 5 6 7 8 9 Comments/Suggestions:
3.6 Speech-Language Pathologists can provide advice on comfort-based diet and fluid texture selection when feeding difficulties exist but further investigation and treatment is not being pursued (e.g. suspected oesophageal dysphagia impacting swallowing comfort but not for further investigation and/or treatment).
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
3.7 Speech-Language Pathologists can facilitate taste-based oral stimulation in the context of severe intractable dysphagia where appropriate (e.g. flavoured swabs, taste and spit, oral sprays).
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
3.8 Speech-Language Pathologists can assess oral hygiene and provide recommendations regarding oral care.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
3.9 Patients/substitute decision makers should be encouraged to include quality of life choices regarding eating and drinking in advance care plans.
Completely Disagree Completely Agree
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1 2 3 4 5 6 7 8 9 Comments/Suggestions:
4 Care Planning 4.1 Speech-Language Pathologists should be active participants in aspects of the advance care planning process relating to swallowing and/or communication.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
4.2 All people referred to Speech-Language Pathology should have documented communication and/or swallowing plans that are communicated across care settings and care providers.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
5 Professional Development and Support 5.1 Student Speech-Language Pathologists should be offered learning experiences related to palliative care as part of pre-vocational training.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
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5.2 Speech-Language Pathologists with less than 2 years experience providing palliative care should have supervision and support from a Speech-Language Pathologist more experienced in providing palliative care.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
5.3 All Speech-Language Pathologists providing palliative care should have access to professional networks for confidential support, ongoing development and self-care.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
5.4 Non-standard supervision and/or networking strategies should be considered, particularly where the Speech-Language Pathologist is an isolated or sole clinician, such as group supervision, peer supervision, teleconferencing and videoconferencing with Speech-Language Pathologists outside their work group.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
5.5 Speech-Language Pathologists with experience in providing palliative care should be encouraged and supported to provide formal and informal professional development opportunities for peers and students.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
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5.6 Speech-Language Pathologists with experience in providing palliative care should be encouraged and supported to provide formal and informal professional development opportunities for other professions.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
6 Quality Framework 6.1 Speech-Language Pathologists should collaborate with patients, families and/or carers to develop patient-centred communication and swallowing goals that are monitored and revised as the patient’s circumstances and wishes change.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
6.2 Speech-Language Pathologists should document and communicate with the multidisciplinary team regarding patient centred goals. They will work collaboratively with the multidisciplinary team to support achievement of these goals.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
6.3 Speech-Language Pathologists should evaluate the outcomes of their work with patients to determine the quality and impact of services provided for patients, families and/or carers.
Completely Disagree Completely Agree
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1 2 3 4 5 6 7 8 9 Comments/Suggestions:
6.4 Outcome measures appropriate for use in palliative swallowing and communication management should be developed, to support both clinical practice improvement and clinical research.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
6.5 Speech-Language Pathologists should be encouraged and supported to conduct clinical research in this area, in order to develop the professional evidence base.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
6.6 Speech-Language Pathologists should advocate for patient access to quality palliative Speech-Language Pathology care as per these consensus statements.
Completely Disagree Completely Agree 1 2 3 4 5 6 7 8 9
Comments/Suggestions:
6.7 Speech-Language Pathologists should advocate for adequate resources to support provision of quality palliative Speech-Language Pathology care as per these consensus statements.
Completely Disagree Completely Agree
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1 2 3 4 5 6 7 8 9 Comments/Suggestions:
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APPENDIX 5: ELECTRONIC INVITATION TO PARTICIPATE – ROUND 2
Speech Pathologists from South West Sydney Local Health District and the University of Sydney are developing consensus/best practice statements on Speech Pathology in palliative care. This research is intended to answer questions that have arisen from clinical practice and promote quality patient-centred palliative Speech Pathology care. You are being contacted for this study as you have already completed a questionnaire on your experience of palliative Speech Pathology care, and indicated that you would be willing to participate in a follow-up questionnaire. If you are interested in participating in this consensus process, please follow the link below to find out more information and to complete a short questionnaire. It is anticipated that this will only take around 15-20 minutes. You may be contacted for further feedback on the statements until consensus is reached. <Survey Monkey link > Thank you for taking the time to participate. As a thank you, everyone who completes this survey will go into a draw to win a $50 Visa gift card. Regards, The South West Sydney Local Health District Speech Pathology Palliative Care Working Party: Katherine Kelly, Anna Corry, Kerry Gilsenan, Emma Pendleton, Claire Tamone and Kylie Vella Supervisors: Hans Bogaardt, Steve Cumming and Belinda Kenny (The University of Sydney)
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APPENDIX 6: PARTICIPANT INFORMATION STATEMENT & INFORMED CONSENT – ROUND 2
(1) What is this study about? Speech Pathologists have an important role to play in managing swallowing and communication difficulties that arise when people have a range of life-limiting illnesses. Many authors have written about the nature of the Speech Pathology role, but it is not clear whether this is occurring in everyday practice. You are being contacted for this study as you have already completed a questionnaire on your experience of palliative Speech Pathology care, and indicated that you would be willing to participate in a follow-up questionnaire. The aims of this phase of the study are to: • Propose best practice statements regarding Speech Pathology in palliative care. • Refine the statements through ratings of agreement and qualitative feedback. • Put forth finalized consensus statements on Speech Pathology in palliative care. You may be recontacted for further feedback on the statements until consensus is reached.
The study involves the completion of an anonymous online survey. No identifying personal details will be collected and your responses are kept anonymous. Your email address will be stored separately from your responses to allow you to be recontacted for further feedback.
(2) How much of my time will the study take? It is estimated that the survey will take around 15-20 minutes to complete. (3) Do I have to be in the study? Can I withdraw from the study once I've started? Being in this study is completely voluntary and you are not under any obligation to consent to complete the survey. Submitting a completed survey is an indication of your consent to participate in the study. You can withdraw any time prior to submitting your completed survey. Once you have submitted your survey anonymously, your responses cannot be withdrawn. (4) Are there any risks or costs associated with being in the study?
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We anticipate that giving up your time is likely to be the only cost associated with participation. This survey does discuss working with death and people who are dying, which may be distressing for some. If you experience any distress, please seek appropriate psychological/emotional support. Examples of appropriate services include: The Employee Assistance Program provided by your employer Beyond Blue Ph: 1300 22 4636 (24 Hours / 7 days per week) www.beyondblue.org.au Lifeline Ph: 13 11 14 www.lifeline.org.au (5) Are there any benefits associated with being in the study? All participants have the opportunity to win a $50 Visa Gift Card in a prize draw. You have the option of providing your name and contact details at the end of the survey if you are interested in being included in the prize draw. Your name and contact details, stored separately from the survey data, will be used only to contact you if you have won a prize. The prize draw will be drawn on <3 months after closure of the survey> and the prize-winner will be contacted by email. (6) What will happen to my responses that are collected during the study? By providing your consent, you are agreeing to us collecting your information for the purposes of this research study. Your information will only be used for the purposes outlined in this Participant Information Statement, unless you consent otherwise. (7) Can I tell other people about the study? Yes, you are welcome to tell other people about the study. (8) What if I would like further information about the study? If you would like to know more at any stage, please feel free to contact Katherine Kelly, South West Sydney Local Health District, Ph: +61 2 4634 3888, Email: [email protected]
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(9) Will I be told the results of the study? You have a right to receive feedback about the overall results of this study. You can tell us that you wish to receive feedback, and if you are interested in being contacted for future studies by providing your name and contact details at the end of the survey. Your details will be stored separately from the survey data. Feedback will be in the form of a one page lay summary. You will receive this feedback after the study is completed. (10) What if I have a complaint or any concerns about the study? If you are concerned about the way this study is being conducted or you wish to make a complaint to someone independent from the study, please contact South West Sydney Local Health District Research and Ethics Office using the details outlined below. Please quote the study title and protocol number. The Manager, Research and Ethics Office South West Sydney Local Health District Telephone: +61 2 8738 8304 Email: [email protected] Fax: +61 2 8738 8310 Ms Kristine Apitz HammondCare Research Governance Officer Telephone: +61 2 8788 3957 [email protected]
Begin the survey by clicking the box below:
I consent to participant in this study.
I don't agree to participate in this study.
(Adapted from a form developed by A/Prof Chin-Moi Chow, Faculty of Health Sciences, University of Sydney)
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APPENDIX 7: CONSENSUS STATEMENTS
1. Service Provision
1.2 All people with life-limiting illnesses should have access to Speech-Language Pathology if indicated (i.e. they develop swallowing and/or communication impairments).
2. Communication
2.1 All people referred to Speech-Language Pathology should have (at least) informal commentary made on their communication skills.
2.2 All people referred to Speech-Language Pathology found to have a
communication impairment, and their carers, should be offered:
o Communication strategies o Communication partner training o Advice and counselling about appropriate alternative and augmentative
communication options Where appropriate, communication therapy and related psychosocial support should be offered (with consideration of diagnosis, prognosis, goals of care and patient wishes).
2.3 Speech-Language Pathology findings regarding a person’s communication skills
will help determine a person’s capacity for informed/independent decision making.
3. Swallowing
3.1 All people referred to Speech-Language Pathology and found to have a swallowing impairment, and their carers, should be offered:
o Safe swallowing strategies o Oral care information o Information and counselling about dysphagia, risks of aspiration/choking,
whether there are specific means by which these risks can be mitigated and potential consequences, in order to make informed decisions about consumption of oral foods/fluids.
Where appropriate, swallowing therapy should be offered (with consideration of diagnosis, prognosis, goals of care and patient wishes).
3.2 People with swallowing impairments should be offered the full range of assessments and interventions (e.g. videofluoroscopic swallowing studies) 3.3 Conversely, specific swallowing assessments or interventions should be
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appropriately withheld if considered futile or will cause undue distress or harm. 3.4 Patients/substitute decision makers should be supported to make decisions about
quality of life eating and drinking choices for themselves. These should be fully informed decisions supported by adequate information about expected swallowing changes, prognosis and the implications of such decisions. Speech Pathologists can provide this information.
3.5 People who have accepted risk and continue on oral intake on which there is a risk
of aspiration should continue to have access to Speech-Language Pathology reviews as required/appropriate.
3.6 Speech-Language Pathologists can provide advice on comfort-based diet and fluid
texture selection when feeding difficulties exist but further investigation and treatment is not being pursued (e.g. suspected oesophageal dysphagia impacting swallowing comfort but not for further investigation and/or treatment).
3.7 Speech-Language Pathologists can facilitate taste-based oral stimulation in the
context of severe intractable dysphagia where appropriate (e.g. flavoured swabs, taste and spit, oral sprays).
3.8 Speech-Language Pathologists can assess oral hygiene and provide
recommendations regarding oral care. 3.9 Patients/substitute decision makers should be encouraged to include quality of life
choices regarding eating and drinking in advance care plans.
4. Care Planning 4.1 Speech-Language Pathologists should be active participants in aspects of the
advance care planning process relating to swallowing and/or communication. 4.2 All people referred to Speech-Language Pathology should have documented
communication and/or swallowing plans that are communicated across care settings and care providers.
5. Professional Development and Support
5.1 Student Speech-Language Pathologists should be offered learning experiences related to palliative care as part of pre-vocational training.
5.2 Speech-Language Pathologists with less than 2 years experience providing
palliative care should have supervision and support from a Speech-Language Pathologist more experienced in providing palliative care.
5.3 All Speech-Language Pathologists providing palliative care should have access to professional networks for confidential support, ongoing development and self-care.
5.4 Non-standard supervision and/or networking strategies should be considered, particularly where the Speech-Language Pathologist is an isolated or sole clinician, such as group supervision, peer supervision, teleconferencing and
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videoconferencing with Speech-Language Pathologists outside their work group. 5.5 Speech-Language Pathologists with experience in providing palliative care should
be encouraged and supported to provide formal and informal professional development opportunities for peers and students.
5.6 Speech-Language Pathologists with experience in providing palliative care should
be encouraged and supported to provide formal and informal professional development opportunities for other professions.
6. Quality Framework
6.1 Speech-Language Pathologists should collaborate with patients, families and/or carers to develop patient-centred communication and swallowing goals that are monitored and revised as the patient’s circumstances and wishes change.
6.2 Speech-Language Pathologists should document and communicate with the
multidisciplinary team regarding patient-centred goals. They will work collaboratively with the multidisciplinary team to support achievement of these goals.
6.3 Speech-Language Pathologists should evaluate the outcomes of their work with
patients to determine the quality and impact of services provided for patients, families and/or carers.
6.4 Outcome measures appropriate for use in palliative swallowing and
communication management should be developed, to support both clinical practice improvement and clinical research.
6.5 Speech-Language Pathologists should be encouraged and supported to conduct
clinical research in this area, in order to develop the professional evidence base. 6.6 Speech-Language Pathologists should advocate for patient access to quality
palliative Speech-Language Pathology care as per these consensus statements. 6.7 Speech-Language Pathologists should advocate for adequate resources to support
provision of quality palliative Speech-Language Pathology care as per these consensus statements.
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APPENDIX 8: SUPPLEMENTARY MATERIAL TO PUBLISHED ARTICLE IN CHAPTER 3 Supplementary Table I: Key cases Gardner; re BWV (2003) VSC 173 Jurisdiction: VIC Summary of Context: Application made to the court to determine the lawfulness of ceasing artificial nutrition and hydration in the context of a direction made years before. BWV was a 69-year-old in residential care with advanced dementia due to Pick’s disease. A PEG had been inserted earlier in the progression of her illness, but she was now in a persistent vegetative state. Key Themes: • Provision of nutrition and hydration via a PEG is considered to be a medical procedure. • Palliative care includes the reasonable provision of food and water if desired. • There is no requirement that people who are dying be given artificial nutrition and hydration unless it is required to relieve pain, suffering or discomfort. Outcome: The validity of BWV’s request was upheld and artificial nutrition and hydration ceased. (Ashby & Mendelson, 2004) Hunter and New England Area Health Service v A (2009) 74 NSWLR 88 Jurisdiction: NSW Summary of Context: Application made to the court to declare the validity of an advance care directive made by Mr A declining dialysis. Mr A was a Jehovah’s witness and at the time of proceedings he was unconscious with septic shock, respiratory failure and renal failure and required mechanical ventilation. Key Themes: • It is battery (assault) to administer medical treatment without consent. • Consent may be express or implied, depending on the circumstances of the case. • Consent may be given by: the patient themselves, by their guardian, by their spouse or by a close friend or relative. The next of kin cannot give consent
unless they fall into one of the previous categories. • An adult is presumed to have capacity to consent to/refuse medical treatment unless proven otherwise. Consent is not valid if there has been undue
influence or the person’s will has been overridden.
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• Emphasis is placed on individual autonomy over the State’s interest in protecting and preserving life. • A person may specify that they do not want to receive medical treatment via an “advance care directive” that must be respected if: it is made by a capable
adult, relevant to the current situation, is clear and unambiguous. It is not necessary that the person be informed of the consequences of the decision and it does not matter if the rationale is based on religious, social or moral grounds rather than consideration of risk and benefit.
• Application should be made to the court for guidance if there is genuine uncertainty about the validity of an advance care directive, and treatment may still be provided until the court issues a decision.
Outcome: The validity of Mr A’s advance care directive was upheld and dialysis was not administered. (Faunce et al., 2009; Freckelton, 2011) Brightwater Care Group (Inc) v Rossiter (2009) 40 WAR 84 Jurisdiction: WA Context: Application made to the Supreme Court to determine appropriate action. Mr Rossiter had spastic quadriplegia as a result of separate incidents in 1988, 2004 and 2008 and resided in a care facility operated by Brightwater Care Group (Inc). He was dependent on others for care and received nutrition via a PEG tube. He expressed a wish to die and to be deprived of nutrition and hydration to this end, with the exception of that required for pain relief. Key Themes: • An adult is presumed to have capacity to consent to/refuse medical treatment. • The right of autonomy or self-determination gives an individual the right to choose how they life their life and what happens to their body. • Consent must be given for medical treatment to be lawfully administered. Even if the absence of medical treatment will result in the loss of life, a person
is not obliged to consent, and a care provider is not obliged to provide treatment in the absence of consent. • Nutrition and hydration given via a PEG constitutes medical treatment. This may not be administered if a person with capacity refuses it. • The obligation to provide palliative care remains, and those providing it are not criminally responsible. Palliative care must be provided with the informed
consent of the person and must not include any actions that may cause or hasten death. Outcome: Mr Rossiter’s request was observed. Provision of artificial nutrition and hydration was ceased and palliative care provided. (Curnow, 2014; Faunce et al., 2009; Freckelton, 2011) Australian Capital Territory v JT (2009) 232 FLR 322 Jurisdiction: ACT Summary of Context: Application made to the court to determine whether nutrition and hydration should be delivered outside of what was required for palliative care. Mr JT was a 69-year-old man with paranoid schizophrenia with religious obsessions, amongst which was an
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obsession with fasting to bring him closer to God to the extent that he was at risk of dying. He was cared for in the Jindalee Aged Care Facility after severe injuries following a fall. Key Themes: • Capacity is compromised by delusional and irrational thought, similarly as when a person is unconscious. They cannot legally refuse medical treatment. • In this context, health and medical professionals must apply treatment that is in the best interests of the person. It is for the court to decide what they are,
event if they differ from the views of those professionals. • Treatment is not futile even if the patient will resist the treatment and if the underlying condition will continue to cause the same scenario. Outcome: Artificial nutrition and hydration was to be provided and restraint use to achieve this if Mr JT resisted. (Faunce et al., 2009; Freckelton, 2011; L. Willmott et al., 2014) Case: H Ltd v J (2010) 240 FLR 402 Jurisdiction: SA Summary of Context: Application was made to the Supreme Court to determine whether H Ltd, the care provider, should observe directions made regarding a possible future situation. J had post polio syndrome and Type 1 diabetes, requiring regular insulin. Her functional condition deteriorated over a period of ten years to the extent that she required full care for all activities of daily living and she received nutrition and hydration via a PEG. She made an anticipatory direction that she should not be provided nutrition, hydration or insulin should she ever be in the terminal phase of illness or a persistent vegetative state except as required for palliative care. Key Themes: • There is no obligation for a capable adult to take life-sustaining medication or nutrition and hydration, and they may refuse it. Care providers are not
required to provide these things if the person refuses (they are legally obliged to do so under usual circumstances). • Self-starvation is not suicide. • “Anticipatory directions” may be made to refuse medical treatment in the event that the person becomes unable to make decisions about medical
treatment. Outcome: J’s directions should be observed in the relevant circumstances, unless withdrawn or revoked. (Curnow, 2014; Freckelton, 2011)
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