End of Life Care: Leadership and quality in end of life care in Australia

End of Life care.

Leadership and quality in end of life care in Australia Round table recommendationsFebruary 2013

Dr Zoe Keon-CohenMonash University, Melbourne

Steering Committee:Dr Zoe Keon-Cohen Specialist Anaesthetist, Research Fellow

Monash University, Melbourne

Professor John McNeil, AM Head of Department of Epidemiology & Preventive Medicine Head of School of Public Health & Preventive Medicine Monash University, Melbourne

Mr. Neill Batt AO Australian Centre for Health Research, Melbourne

Professor Paul S. Myles Chair, Dept of Anaesthesia and Perioperative Medicine, Alfred Hospital and Monash University, Melbourne

Professor William Silvester Director Respecting Patient Choices, The Austin Hospital Heidelberg, Victoria

Professor Peter Brooks, AM School of Population and Global Health, University of Melbourne

Participants:Mr Rod Young CEO Aged Care Association Australia

Dr Paul Bates CMO Bupa

Professor Jeffery Zajac Physician Austin Health, Melbourne Brain Centre.

Ms Carol Bennett CEO Consumer Health Forum

Ms Bernadette Tobin Director Plunkett Centre for Ethics, St Vincent’s Hospital Sydney

Professor Geoff Mitchell General Practice and Palliative Care, University of Queensland

Dr. Brendan Murphy CEO Austin Health

Professor Richard Larkins, AO Chair EMBL Australia

Mr Mark Valena General Manager GMHBA

Mr Alan Castleman Chairman Australian Centre for Health Research

A/ Professor Justin Oakley Monash Deputy Director Centre Human Bioethics

A/ Professor Dominic Wilkinson A/Professor of Neonatal Medicine and Bioethics, University of Adelaide

Professor Ben White Director, Health Law Research Centre, Faculty of Law, Queensland University of Technology

Mr Stephen Parnis Vice President AMA

Professor Rinaldo Bellomo ICU Consultant Austin Health

Professor Russell Gruen Director of Surgery and Public Health, Alfred Health

A/Professor Peter Hunter Director of Sub-acute Medical Services, Division of Rehabilitation, Aged and Community Care, Alfred Health

Professor Patsy Yates Queensland University of Technology

Ian Maddocks AO Emeritus Professor Palliative Care Flinders University

Professor David Story Academic Chair Anaesthesia, Melbourne University

Leadership and quality in end of life care Australia: Round table recommendations

Melbourne February 27th 2013

ACHR Paper Leadership and quality in end of life care Australia: Round table recommendations February 2013

ISBN: 978-0-9923743-1-0

Contents

2 INTRODUCTION4 EXECUTIVE SUMMARY

7 THE PROBLEM AND THE CASE FOR CHANGE7 The aging population and burden of disease

8 Culture within the medical profession

8 Administrative challenges amongst health care systems

9 The vision: Potential benefits with improved end of life care

10 THE WAY AHEAD: Recommendations of the Round Table10 1. Advance care planning

12 2. Education and role of medical professionals

14 3. Health care resources, policies and support structures

16 RISKS AND CONCERNS WITH IMPLEMENTING CHANGE

17 CONCLUSION

18 Focus 1A: Primary Care & Community – Short Term

19 Focus 1B: Primary Care & Community – Medium & Long Term

20 Focus 2A: Hospital and Community Care interface – Short Term

21 Focus 2B: Hospital Entry & Ambulance – Medium & Long Term

22 Focus 3A: Education – Short Term

23 Focus 3B: Education – Medium & Long Term

24 REFERENCES

1


Introduction

Human quality of life up to and including end of life is extremely important to both the individual and their families. However, many Australians do not experience a good death.1

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The practice of medicine has changed and evolved. We have experienced a golden era of healthcare with rapid technological advancement enabling us to treat many medical ailments and allowing us to live into the advanced years. This creates new challenges for medical practice in particular, balancing the imperative to “cure” with the personal, social and financial burden it can create. A limitless pursuit to cure may result in diminishing benefits in terms of health outcomes and an increasing emotional and physical burden for the individual. There are also missed opportunity costs and greater burden for society at large. End of life care implies an awareness of this balance with respect to the decreasing marginal benefits of medical treatment for the extremely sick and frail: in short, an awareness of the futility of certain types of medical care. Futility is extremely difficult to define, but must be based on the best interests of the patient. A futile treatment can be a treatment that:

(a) That is highly unlikely to produce the desired effect, or (b) May provide some short-term respite, but at a high cost in

discomfort or further impairment of quality of life.

Each type of futility requires complex decision-making. Improving end of life care requires clinical leadership, early recognition, collaboration and system change, all of which is challenging, but this does not dismiss the urgency and magnitude of the need.

A panel of diverse professionals met in Melbourne in February 2013 for a “Round Table” and sought answers to these topical and challenging questions surrounding end of life care in Australia. The panel, which included representation from legal, political, medical, surgical, general practice, healthcare administration, consumers, AMA, ethical, and academic groups, engaged in hearty open discussion to create impetus for community debate and support for political and practical action. This article summarises the background of the current problem in Australia and the discussions and recommendations of the panel.

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Executive summaryThe practice of medicine must adapt to meet evolving practical

and ethical challenges of an aging population, in addition to ongoing improvement in the technological capacity to prolong life. To meet these challenges, doctors need to incorporate better care at end of life into routine practice.

These issues were addressed at a roundtable convened by Melbourne and Monash Universities in conjunction with The Australian Centre of Health Research. The panel included diverse health professional leaders assembled in Melbourne early in 2013. These representatives were from backgrounds of legal, political, medical, surgical, general practice, healthcare administration, consumers, the Australian Medical Association, ethical and academic groups. The panel engaged in vigorous discussion to identify practical solutions to improve end of life care and how to engage community and political support. This paper is a summary of that discussion.

Community engagement, legal cohesive supports, workflow processes.The key recommendations were:

1. Enhanced leadership and education in respect to end of life care in healthcare profession and the wider community

Medical leadership and education:

include end of life care communication and decision making training in their curriculum and revalidation processes.

leadership in collaborative patient-centred care.

patients and enact appropriate and timely changes in goals of care.

plans for MET (Medical Emergency Team) calls.

elderly patients undergoing surgical procedures.

Community education

directives and application in different clinical settings.

‘Engage with age’.

about ACP for use in medical waiting rooms and other healthcare sites.

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The meeting process highlighted three key points for change:

1. Enhanced leadership and education in respect to end of life care in the healthcare profession and the wider community.

2. Improved implementation of Advance Care Planning (ACP) and Advance Care Directives (ACD).3. Legal, governance and national resources for support of improved end of life care

of social media to improve awareness of the issue.

design to spread talks and ideas, www.ted.com) about a good death to increase community understanding and promote discussion around quality end of life care.

2. Improve implementation of Advance Care Planning

We need to implement Advance Care Directives (ACD) at appropriate points in the care pathway and ensure that these are respected and followed by clinicians and recorded in an up to date format for easy communication.

Community

care planning educators.

patients in their home.

copies of plans to emergency departments.

annual health check, private health insurance renewal, organ donation, admission to nursing home, writing a will, driver’s license renewal (see Table 1).

health insurance, and to promote education for patients with referral to medically supported websites.

Hospital

setting.

aged care providers

disease clinics and rehabilitation units.

3. Improved policies and governance within the healthcare system

Support acute system changes for advance care planning in the community and hospitals.

planning.

(eg. section 11.38)

directives. (ACDs)

Advance care planning and accreditation requirements.

and public sectors.

5


6


The problem and the case for changeThe day’s discussions commenced with three salient case studies by senior clinicians to highlight the clinical end of life issues – Professor Paul Myles of Alfred Health and Professor Rinaldo Bellomo, of Austin Health.

These examples highlighted the significant distress and suffering for families, patients and staff created by unnecessary and burdensome care in our system. As one clinician described the pressure to keep treating:

“ I tried to explain all the complications (affecting the patient) and the reasons why (but) there was absolutely no progress from this discussion. So in the middle of the night, the patient deteriorated further and I chose to continue to treat him - despite my wishes, despite my perspective, despite my professional opinion - because I felt that any decision to the contrary might expose me to all sorts of legal and emotional dangers that I do not wish to face.”

The question was raised: “Would it have made any difference if the patient had completed an Advanced Care Directive?”

In response: “I think if he had an advance care directive and it clearly stated that he didn’t want to be on life support for a long time and he didn’t want extraordinary efforts to the level then being made, it might (have made it) easier for me to have a discussion along the lines of, “this is an act of love by pulling out. By stopping the artificial life support, you’re actually delivering the last act of respect and love towards this person who’s so important to you.”

The aging population and burden of disease

People are living longer and consequently the practice of medicine and the way we live and die has changed. Therapeutic and technical advances have improved and extended lives of many Australians, but at a cost. A new older generation of people is living with more complex disease and gradual decline in quality of life.

The Australian Institute of Health and Welfare4 projects a shift from 1:8 to 1:4 of the population aged over 65 years and for deaths by chronic disease to dramatically increase to 250,000 per annum in 2036. More than 52% of Australians now die in hospital, despite the fact that more than 90%5 would prefer to die at home.6-8 Despite the overall reduction in the national death rate, the number of deaths in hospital is increasing by 0.6% annually for males and 1.2% for females. In 2011, more than 146,000 people died in hospital in Australia.9 As the population ages, “we are seeing an increasing amount of surgery that is of marginal benefit.”1 We now know that 20% of surgical patients over 70 years of age will have complications following surgical procedures resulting in extended hospital stay and increased mortality.10

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Culture within the medical profession

The training and culture of different medical specialties have an impact on the delivery of care and management of patients at the end of life.10-12 Stopping treatment because of inevitable death is sometimes felt as a “failure”, especially if the patient-doctor relationship has been over the long term. In the surgical setting, deaths are compulsorily reported in morbidity meetings and valiant attempts to prolong survival fervently defended. Few incentives exist for appropriate discussions regarding patient’s overall goals of treatment.

From an ethical point of view, doctors have an internal conflict between the preservation of life, the Hippocratic oath and the concern to fulfill the perceived duty of care to patients.12 There is also an ongoing tension between the principles of patient autonomy, which is desired by modern informed patients, versus medical paternalism. In many end of life situations, the patient may not have the cognitive ability to participate in treatment discussions, which adds the difficulty of identifying who is responsible for a patient’s care. Additionally there is sometimes a conflict between the physician’s role as patient advocate and that of the hospital’s role in providing for the community with maximum justice and equality.

To compound this, there are no clear ethical and professional guidelines and the legal situation differs from state to state. This contributes to a general misunderstanding amongst doctors of their rights and obligations.13 The Medical Board of Australia code of conduct states: “You do not have a duty to try to prolong life at all cost. However, you do have a duty to know when not to initiate and when to cease attempts at prolonging life”.14 However, knowing there is a duty does not help physicians to make decisions on an individual basis.

Administrative challenges amongst health care systems

Unfortunately issues surrounding fragmentation of care, a culture of denial towards dying and death, unrealistic media perceptions, inconsistent legislation and inappropriate funding models hinder proper end of life care and advance care planning. The acute care hospital system is designed for rapid diagnosis and treatment, maximal efficiency and an ingrained culture to save lives at all cost. The organisational structures,15 especially after hours often leads to end of life decision making defaulting to junior staff who don’t have the authority or confidence to make “tough decisions”, “conveyer belt” emergency16 management with unnecessary transfer to specialty departments, and care that is reactive, unwanted and unnecessary without adequate consultation with family is common. For instance, the role of medical emergency teams (MET) has been perhaps inappropriately expanded within hospitals to ‘rescue’ dying patients17. Thirty percent of a typical MET team workload has been attributed to end of life care.18,19 For MET teams to perform their appropriate task, patient treatment limitations should have already been clarified.

Despite deterioration in condition to death often not being unexpected , there is often a lack of documentation of Not-for-Resuscitation (NFR) orders or Advance Care Directives (ACDs) available for the MET team.20 A lack of recognition of realistic patient goals influenced by misperceptions of CPR capabilities from TV series and other media21,22 may sometimes resulting in confusion, crisis-led treatment, and failure to adequately meet the needs of patients up until death. This problem is often present in aged care facilities, resulting in unnecessary, unwanted and unsuccessful resuscitation attempts, with poor survival rates and sometimes inappropriate transfer to emergency departments.23

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There is currently a lack of available resources to enable improvement of end of life care. These resources should include available, accessible trained staff to provide timely, collaborative discussions towards end of life. Demand for specialised palliative care services, which provides expert guidance for complex cases, has increased yet the availability of these resources is unequal and insufficient, in both the private and public healthcare setting. Australia does not currently have quality assessment tools such as the End of life Care Quality Assessment Tool,24 Gold Standards Framework: Enabling a gold Standard of care for all people nearing end of life25 and NICE Quality Standards national data collection in The UK and Ireland.26,27

The consequences of all of these challenges are significant: Costly and often futile treatment, repeated ICU admissions, high-risk surgery, an increased length of stay, multiple readmissions and poor family communication and care.

The vision: Potential benefits with improved end of life care

The benefits of improving the system to address the above issues are multiple. For patients and families there will be improved quality of life-before-death, maintenance of dignity, prevention of psychological burden and less likelihood of unexpected conflict or distress. Allowing for time to “say goodbye” is critical. Early involvement allows for the patient to participate as much as possible while they are still able to do so. There will be less pain and suffering caused by futile emergency and inappropriate invasive care escalation18 in acute hospital settings.19,28 Secondly, for medical teams and carers, it will alleviate psychological, moral and emotional distress and conflict,29 increase satisfaction, engagement and relationships,30,31 and improve accuracy of decision making in crises.15 Thirdly, there will be improved appropriate allocation of resources and positive examples of good end of life care for within the health care system as a whole.

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The way ahead: recommendations of the Roundtable

The major focus for change during the round table session was education, but other key issues were discussed such as clinical behavior, clinical leadership, practitioner confidence, and hospital procedures. The overall conclusion was end of life care is an important part of medical practice. Areas of change evolved into three themes:

1. Advance care planning implementation,

2. Education of medical professionals and the community, and

3. Improving policies and governance in the health care system.

How to best promote and provide these was debated.

1. Advance care planning

“Hope for the best, but prepare for the worst.”32

The decision about whether to continue to offer life-prolonging care is ultimately a medical decision, but the continuation of care must incorporate the individual’s perception of the impact of his/her burden of disease.33 To do this requires discussion in an appropriate way and at an appropriate time in the patient’s overall medical process and progress. This is the role of advance care planning (ACP) and (ACDs). ACDs are written statements by competent persons expressing their desires about their future medical treatment should certain conditions arise. This covers the time when they may no longer be competent to make their own decisions. It also allows them to appoint a substitute decision maker. ACDs are now recognised in Australian legislation and have been considered binding in common law in the case of A v Hunter and New England Health Authority34 echoing that in Canada and the UK, where failure to consider and follow a directive has been interpreted as assault.

ACDs were initially introduced into Intensive Care Units35 and in palliative care. They have also evolved into psychiatry, general practice, general medicine, geriatrics, renal dialysis units, oncology and recent anesthesia clinics. Early efforts to improve end-of-life care were focused on increased documentation and not-for-resuscitation (NFR) orders.36 Subsequently end of life care has become better coordinated, using pro-active patient-based discussions regarding values and limitations to treatment.37 Hospital-based trials including terminal medical patients38,39 and some in the perioperative setting,40-42 have led to a reduction in futile interventions, improved quality of care and increased patient and staff satisfaction. Other physician-directed programs include the ‘Respecting Patient Choices’ program at the Austin Hospital in Melbourne, and the ‘Enough is Enough’ resident training program introduced at Geelong Hospital. A randomised trial in medical patients at The Austin Hospital Melbourne, showed that greater benefit may be achieved through end of life care that is timely, appropriate, coordinated,, well communicated, and sensitive. It addresses an important emotional and psychosocial need, and relieves distressing symptoms occurring during the natural dying process.

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Trigger points for advance care planningThere are various points in the patient care pathway where a ‘trigger’ could be created to prompt care teams to suggest opening the discussion and commencing patient education about advance care planning. These events cover the three stages of a person’s life and their health care pathway: the well patient in the community under the care of general practitioners, the patient in the acute hospital care setting with decline in chronic disease and the patient approaching end of life (Table 1). The NHS gold standards framework provides a prognostic indicator guide to identify appropriate patients. {Gold standards} For the majority of patients, advance care planning is most appropriately done in the community setting, at times of relative health, with appropriate reflection and medical guidance. The three triggers identified by the NHS are firstly the ‘Surprise Question: would you be surprised if the patient were to die in the next 6 to 12 months?” Secondly, the presence of a clinical indicator. Thirdly, a patient choice. A collaborative timely and effective partnership must be developed for delivery of care to these patients between the community and the health care institutions and various settings.

In acute care, for elderly or high risk patients undergoing major surgery, an obvious setting for initiation ACP discussions is during the surgical consent process or in the pre-admission clinic.43 Recently, the surgical pathway has incorporated ‘timeout’ procedures to prevent

whether patient treatment goals and substitute decision makers have been discussed and clarified. Concerns however, have been raised that there is already a lot of ‘difficult’ talk going on in planning for the surgery itself, and adding end of life discussions may exacerbate the patient’s stress, or may not be fully or accurately comprehended. Some kind of simplified patient stratification in terms of their views on end of life care may be helpful, for example the patient who wants all, versus the patient who is happy to be guided by clinicians, versus the patient who wants minimal medical intervention.

Non-medical care or general community trigger points such as drafting a will, registering for organ donation with drivers license renewal, renewal of private health insurance, or signing enduring powers of attorney were also suggested. Many of the suggestions would benefit from integration with existing electronic records and computer databases (both public and private) and the currently implemented Patient Controlled Electronic Health Record (PCEHR). These also require engagement and ‘buy-in’ from groups such as licensing authorities, private health insurers, legal professionals and other paramedical providers. This type of program would likely need a local Australian ‘personality’, in addition to support from the Council of Australian Governments.

Most major hospitals are developing or have developed ACP units, as are hospices, residential and palliative care facilities. ACDs have also been included in on-line self-registering sites and government initiatives in Queensland and NSW44 for allocation of surrogate decision makers.45

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Limitations of advance care planningSurrogate decision makers need to be trained to act in the best interests of the patient and linked to ACP units. This was reflected in the 2012 (NCEPOD) report on in-hospital cardiopulmonary resuscitation in the UK.46 One outcome of this report has been that resuscitation orders of various hospitals are now stratified into categories such as ‘Not for intubation’, ‘not for inotropes’, ‘not for ICU’, or ‘not for chest compressions’, however easily reversible causes may be interpreted as appropriate treatment. Better approaches to consent for these orders were suggested, including and opt-in’ consent. Failure to do this (as in the current ‘opt-out’ default position to treat) might constitute assault.47 Many hospitals now routinely document a patient’s ‘NFR status and limitations to treatment’ on medical admission with highly visible coloured documents as part of the patient’s medical record.

Table 1: Potential trigger points for initiation of advance care planning discussion.

GP/community/ social

Hospital/surgical/ procedural

Approaching end of life events

health insurance plan

age trigger

organ donation

with tax rebate?

programs.

with new diagnosis or deterioration of cancer or chronic disease or requiring referral to acute service e.g. renal referral for diabetes

risk surgery or patients

team for potential medical futility decision-making

patients requiring ACP support

discharge summaries

term organ support e.g. dialysis, home oxygen

pension application

home support services

– every patient should have an ACP discussion

2. Education and role of medical professionals

A significant increase in medical education and awareness is required to change attitudes to make end of life care ‘ core business’ for most clinicians dealing with elderly patients. Not all physicians will be willing and able to provide expert end of life care. However, there is a clear need for more leadership by senior clinicians in hospital settings. All Doctors should be expected to identify futility scenarios and initiate early discussion or referral with the treating team, patient and family. Doctors need to enable, initiate, educate and support development of ACP and the identification of substitute decision makers and to make this a routine part of everyday practice.

One of the barriers has been the increasing sub-specialisation in hospital practice, which has resulted in a loss of generalist physicians who may be able to take a more holistic view of appropriate treatment.

“ Traditionally health was considered as multidisciplinary, however, much of that multidisciplinary behavior has now been lost in busy hospitals. We have medical ward rounds done without nurses and separate discussions between different members of the core team. Existing structures work against input from the worried nurse who may believe that a physician is doing something that’s futile. Ideally, that discussion would have happened on the ward.”48

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The roundtable consensus suggested that the ageing population demanded the training of more generalists who can link, coordinate and direct the care of complex medical patients. There is a need to ensure the generalist ‘global perspective’ can coordinate care, rather than a series of specialists with a lack of overall perspective of treatment goals. Generalists should provide continuity and coordinated transitional care with referral to designated inpatient end of life care teams who take into account patient goals and values. This model also needs to be applied in private hospitals where access to adequate end of life care has been traditionally limited.49

To achieve the above goals requires education and training of medical professionals at multiple levels, as well as increased community awareness. Allied health and other affiliated medical professionals also require increased education and training to perform ACP. Suggestions included:

common approach in terms of curriculum planning.

end of life care and could be expanded nationally for resident and internship programs. Junior doctors should feel comfortable with the concepts of palliative care, the concept of referral to palliative care and the concept of end-of-life care..

leadership and support in end-of-life care.

within colleges and craft groups.

ACP ‘rapid response or STOP’ referral teamsThere is a role for an advance care planning service within hospitals to support clinicians in providing timely, appropriate collaborative plans for patients throughout their care and allow for a graded care pathway towards end of life and palliation. Their major role would be to educate and empower all staff to apply advance care planning in their individual care settings The team could also support education for appointed decision makers to perform an end-of-life support role in the best interests of the patient. Within the team, Specialists allocated to individual hospital units can be used to assist to tailor individualised care plans, e.g.: surgical, oncology, renal dialysis, ICU, MET teams, geriatrics, acute medicine, respiratory and heart failure clinics. The benefits of this supportive care pathway and specialist engagement are likely to result in improved quality of care for many patients and avoidance of early resolution of family and inter-specialty disputes. Finally, preventing late or after hours referrals with earlier end of life discussions would also greatly reduce stress and allow for rational reflection, consideration and a collaborative approach to aligning patient and physician goals of care.18

“ In general, there is a lack of opportunity for collaborative team forums to allow the intensivist, anaesthetist, physician and surgeon to discuss - outside of that heat - how they might commonly approach matters. A framework needs to be developed to provide for these discussions in health services to enable building of a sense of trust and agreement on general principles for ICU admissions.” 50

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In community services ACP referral teams can provide a similar role in nursing homes and other community hospice settings. At Barwon Health these teams in conjunction with Medicare local services have dramatically increased the uptake of Advance Care Planning in the local community. Additionally, the Alfred Hospital in Melbourne has medical registrars visit nursing homes, reducing the rate of emergency department transfers. Further, access to outpatient palliative care improves the likelihood of patients being cared for during their last days at home, rather than in hospital. Remote and regional care facilities also experience a lack of resources for appropriate and timely end of life care. Developing outreach and specialist links for video conference referrals could improve care provision.

A new and improved framework should include

training, evaluation and audit feedback processes and arrangements for collaboration with other health care providers. ICU admission guidelines need to be improved.

safety structures.

surrogate decision makers and family discussions critical to emergency and non-emergency treatment accurately reflecting patients wishes, should be accessible and current for all clinical care teams.

planning and resources to allow ‘after-hours’ availability when necessary.

3. Health care resources, policies and support structures

As well as education and culture change driven by the medical profession, support from government and regulatory bodies are required to develop the infrastructure necessary to provide appropriate end of life care. For instance initiatives such as the PCEHR51 can greatly increase coordination of care and communication between different health providers such as nursing homes and emergency departments. The PCEHR have now received funding to include ACP as a part of their format. Technology advances, such as the use of smart phones and mobile scanners for ambulance staff can be linked.

Increased research data is needed in this area to investigate what is currently happening and to determine where improvements can be made. Longitudinal approaches such as registry of surgery outcomes for all those over 80, and data to better measure the benefits of individual surgical procedures in the elderly should be instituted. There is also need to evaluate the effectiveness of end of life care and patient and relative satisfaction with care planning, communication awareness and education programs. There is also a need to improve the accessibility of advance care directives, among minorities. Further development of effective and standardised approaches to advance care planning discussions, including how best to present prognostic information to patients is also required.

The Federal Government should engage Medicare reform to provide reimbursement for GPs to initiate ACP discussions, similar to the way in which they are now paid for coordinating ‘care teams.’ It has also been recognised that there is an increasing need for palliative care services across Australia. This has been represented in the Senate Palliative Care Enquiry 20126, Victorian Policy and strategic directions for Palliative Care 2011 – 2015, Clinical Practice Guidelines for communication in End of Life issues, June 2007 and National conference Brisbane 2012.

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Palliative care combined with advance care directives has been demonstrated in studies from the United States, Spain and UK to reduce health spending and decrease the likelihood of in-hospital deaths.52 Workflow structures and the institution of national guidelines are needed to “make it easy” to make the right decisions. Current guidelines for palliative health care teams, patients and families such as ‘PREPARED’, can inform a better model.53 Finally, we need to ensure that reform is supported by consistent simplified national legislation, definitions, and legal boundaries throughout Australia.54 The recent reform of the Guardianship Act of 2012 section 11 referring to advance care plans and case law, A v Hunter New England Health Authority 200955 provide support for Advance Care Directives in law. A community education program to empower surrogate decision makers to be assertive needs clarity within each jurisdiction and a well-defined hierarchy of decision makers.

Standards and accreditationThe Australian Commission on Safety and Quality in Heath Care is developing a national standard for end of life care accreditation.50 50End of life care recommendations are now included in the National Safety and Quality Health Service Standards. They include the national consensus statement regarding the recognition and response to clinical deterioration 4.456 and reflects the need for organisations to take a patient-centred approach, supporting and informing patients and their carers to enable informed consent to treatments57.

Standard 9, ‘Recognising and responding to clinical deterioration in acute health care’ specifically 9.8, refers to a need to ensure information regarding advance care plans and treatment limiting orders are available in the patient clinical record, where appropriate, that a system is in place for preparing and/or receiving advance care plans in partnership with patients, families and carers, and that these are appropriately documented in the patient clinical record.57

Standard 2 refers to “Partnering with Consumers’ and reflects increased community engagement, and feedback to help improve safety and services. However a more specific focus on end-of-life care, access to palliative care, and a structured approach to advance care plan would be beneficial.57

To achieve all this we need a central platform (“a name and a face!”) through which to market the message. Consistency of language is important also, particularly in legislation where different terms have been used in the past to describe a similar concept. In the longer term community education, led by clinicians and identified community leaders is a primary necessity. Senior clinicians should lead the program. Political will and courage is needed to ensure public support.

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Risks and concerns with implementing change

This challenging area of medicine is of course not without significant risks and concerns with implementing changes. Broadly these fall into several categories:

1) Protection for the vulnerable and the sanctity of life

Safeguards must be in place to protect vulnerable patients and allay concerns and their families of possible neglect, abandonment, exploitation or elder abuse. A thorough understanding of the purpose of an advance care directive by patient, family and physician must be sought. There should be an acceptance that the clinician will err towards the side of caution to preserve life. A value-based assessment may be more beneficial for understanding the wishes of patient and distinguishing between acting in patients’ best interests not just family interests. Non-English speaking, regional, migrant or remote communities must also be provided access for appropriate and high quality end of life care.

2) Flexiblity and respect for patient autonomy and dignity

Respect for patient autonomy and dignity are fundamental ethical principles that intersect with end-of-life decision-making.58 Patients must be allowed to refuse treatment and maintain the right not to be involved in active care. On the other hand, patients do not have a right to

and legal support for the medical authority to refuse patient requests for inappropriate care and must be clear and robust. Care must be taken to prevent ‘patient ordered or dictated medicine’ and preserve medical judgment and the appropriate identification of futility. Following from this, plans must have the flexibility to change, yet maintain authenticity in documentation. Ensuring physician confidence in the up to date validity of end of life plans and directives will be challenging. In addition, incorporating these plans into continuous care models and understanding the difficult nature and changing desires of patients and families will need further refinement. These plans must not be prescriptive for specific events but rather focus on a description of patients’ values and quality of life goals and allow for flexibility and incorporation of differing philosophical values and religious belief.

3) Education and promotion

Media representation and marketing should be encouraged to support positive messages about end of life care to prevent possible media misrepresentation e.g. ‘death panels’.59 Much stigma and myth is associated in the public domain with palliative care. Sensitivity and discretion is needed to approach discussion about death in a positive framework to combat fear and resistance to change and increase the willingness of the medical profession to open discussions. Medical myths surrounding perceived heroic treatment attempts and fear of ‘losing business’ need to be combated to allow care to be improved.

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Conclusion

Leadership by clinicians in end of life care is needed to encourage the medical community to make it a routine part of everybody’s routine practice. A return to a holistic focus, revival of the generalist, and support for families is needed. To quote Hippocrates, the purpose of medicine is “To cure sometimes, treat often, comfort always.” This round table meeting has provided valuable guidance and progress towards viable practical strategies to improve and embrace end of life care in Australia.

We are now in a position to act upon these recommendations and improve the lives of many Australians and the quality of health care delivery of much of our health care system. This privilege comes with responsibility to provide realistic, achievable care goals for our patients. Clinical professionals must take action to improve self-education, re-examine and restructure health care services and provide appropriate resources to enable patients and their families to have a positive experience at the end of life.

“ To cure sometimes, treat often, comfort always.”

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Focus 1A: Primary Care & Community

Short Term

Broad Strategy Possible Tactics

Engage GPs to encourage patients to plan for old age

– Trained nurses in end-of-life discussions to regularly visits GP surgeries to consult patients and promote advance care planning education.

– Expand the existing model with some nursing homes to include local GPs.

A “Respecting Patient Choices” outreach to nursing homes

– Nurses trained in end-of-life discussions to provide ongoing training for nursing homes’ staff and assist patients to prepare ACPs.

– Consider requiring Nursing Homes to implement end of life care planning programs.

Use nursing home admission as the ‘trigger’ for a discussion about ACPs and ACDs

– Advise political and executive decision-makers to insert this requirement into the existing accreditation Scheme.

– Encourage a holistic approach towards care to collaborate between sub-speciality care units. And multiple healthcare providers.

– A checklist or ‘tick-the-box’ strategy

Publicise the above programs for enhanced community engagement and promotion of awareness in quality end of life care

– Enlist a promotional figurehead – e.g. the “Senior Australian of the Year”.

– Generate a motto such as ‘engage with age’.– Develop a set of agreed messages and target audiences.– Add publicity through an assigned promotional

week– e.g. “Palliative Care Week” to focus on the need for wider discussion.

Generate reliable patient data

– Encourage and promote more eHealth records– Develop a robust and acceptable definition of good end of

life care to measure current practices against. – Consider creation of a registry for audit and research of

effectiveness and development end of life care treatment.– Encourage health services management research into

improving the patient care pathway at end of life. – Involve key NGOs in the development of IT technologies.

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Focus 1B: Primary Care & Community

Medium & Long Term


Change the wider community’s attitudes to death and dying

– Implement a long-term attitudinal change program– Clarify consistency and positivity in language around end of

life and a good death.– Assess and test effectiveness of promotional actions and

impact.– Create realistic time frames and goals for the program

implementation in the medium term.

Implement simple changes with improved and rapidly evolving technology and ehealth records

– Enable more people to stay in their homes as they age.– Support for communication of patient histories, and

medical decision-making. – Increase rapid, accurate and reliable communication of up

to date or ‘live’ confidential, information between points of care and health practitioners.

– Allow for eConsultation and faster delivery of information through Internet resources.

– Create a central Internet platform for coordination of end of life care and resources for medical and public education.

19


Short Term


Identify time points for patient entry to hospital:

These are:

1. Presentation to the emergency department: by: a. Self-referral b. Ambulance c. Health practitioner,

specialist or GP from an outpatient clinic.

2. Presentation to hospital clinics for a. Elective surgery or b. Treatment of chronic

medical diseases.

In Emergency department:– Educate GPs, patients and nursing homes about increased

awareness for boundaries of care with chronic functional decline to reduce need for emergency care, through education of surrogate decision makers, and increase outreach services in homes.

– Monitor nursing home referrals and inappropriate use of emergency services.

– Initiate discussions and seek ACP documentation for at-risk patients prior to referral to inpatient teams on presentation to hospital.

– Encourage paramedical staff when attending nursing homes, to seek and collect current ACPs for patients and use ‘smart phones’ to record this documentation for emergency department and hospital documentation.

In elective ‘pre-admission clinics’– Introduce Advance Care planning practitioners and screen

patients for referral. – Refer appropriate patients for ACP consultation.– Engage ICU teams for early discussions of realistic treatment

limitations following surgery.

In medical and surgical outpatient clinics:– Identify ‘frequent flyer’ patients and encourage appropriate

referral to ACP teams and discussions between specialist physicians .

– Patients with newly diagnosed terminal illness or rapidly progressing chronic disease (e.g., requiring dialysis, end stage heart failure or new cancer diagnosis) to Advance Care Planning teams.

On hospital discharge: – Add to discharge summaries a ‘tick box’ to prompt asking if an ACD has been created in hospital, and enhance communication with general practitioners and promote ongoing advance care planning.

– Ensure patients with newly identified chronic disease or approaching end of life have end of life care planning commenced and communicated effectively to GPs

Engage the private health insurance industry

– Reiterating the need for care in this process, the suggestion was to encourage private health funds to begin a discussion with their clients.

Focus 2A: Hospital Entry

20


Medium & Long Term


Increase use of electronic health records

– Continue to improve application of electronic health records to allow for rapid reliable communication of up to date patient treatment plans between acute and primary care providers.

– Provide a platform for collaborative care discussions and real-time rapid communication between specialists, patients and families in different locations.

Promotion of generalists

– Engage generalists to assist specialist outpatient clinics including surgical pre-admission process, particularly for patients with multiple health issues

Audit and review – Create a database of surgery and outcomes in all patients with significant frailty or the age of 70.

– Establish a database of advance care plans and prompts for annual reassessment, and the identification of appointed surrogate decision makers.

Focus 2B: Hospital Entry

21


Short Term


Address Gaps in Education at three levels:

1. Undergraduate 2. Postgraduate 3. Senior practitioners

Undergraduate:– Reassess nation-wide current university medical teaching

curriculum and integrate a common approach to the curriculum on end-of-life issues and practice.

For post-graduates– Generate a national agreement for basic management of

end-of-life care to become a key objective of internship training.

– Encourage specialist colleges to incorporate teaching and skills development of ethics and successful end of life communication into their accreditation and training.

For Seniors– Focus on core groups of interested informed and engaged

medical specialists to become leaders and advocates. Their role is for promotion of change, referral for complex and more demanding cases, and promotion of quality end-of-life care.

– Encourage quality end of life care as part of re-validation and accreditation through regulatory authorities.

– Encourage hospitals to address the need for requiring quality health care at end of life in all institutions.

Acute hospital clinical bedside interface

– Develop an ‘Advance Care Planning help’ referral teams or ‘STOP’ teams to provide collaboration and education and allow for advance care planning discussions. As a final alternative to the ‘MET’ team, this would provide a 24hr service like an organ transplant coordinator to be available to coordinate and assess the need for referrals. This may provide support for junior staff after hours as a last resort and escalate and support rapid senior clinician decision-making.

– Encourage an informed and expert third party to facilitate resolution of difficult discussions, in particular where conflict over best treatment pathways may arise between clinicians.

– Develop an open culture and framework for support and discussions within health services about end of life care.

– Rebuild the multi-disciplinary team, in particular, re-introduce the generalists.

Focus 3A: Education

22


Medium & Long term


Develop and implement a clinician led community education and engagement program

– Generate political support.– Perform community research to understand current

community attitudes, regional variations and the significance in different ethnic groups in end of life planning, Identify effective methods of communication to appropriate target audience, i.e.: community centers, at annual flu shot, annual events.

– Look at low-hanging fruit, easy solutions– e.g. tap into the process of preparing a Will or align with funeral plan insurance.

Examine the legal framework

– Codify and simplify the legislation.– Encourage national reform for consistency between

different jurisdictions and avoid ambiguity.– Establish a clear hierarchy of decision-makers for legal

issues and conflict resolution.

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Focus 3B: Education

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Documents

End of Life Care: Leadership and quality in end of life care in Australia