Quality of Dying and Death in a Residential Hospice

by

Isuri Weerakkody

A thesis submitted in conformity with the requirements

for the degree of Master of Science

Graduate Department of the Institute of Medical Science

University of Toronto

© Copyright by Isuri Weerakkody 2014

Quality of Dying and Death in a Residential Hospice

Isuri Weerakkody

Master of Science

Institute of Medical Science

University of Toronto

2014

Abstract

Purpose: To assess the QODD of terminally ill patients who passed away in residential

hospice.

Hypothesis: Better QODD is associated with prior receipt of palliative care, poorer QODD is

associated with shorter length of stay.

Methods: Caregivers of deceased patients who died in residential hospice were recruited 4–6

months after death of the patient. QODD was measured with the Quality of Dying and Death

questionnaire, with scores reported on a scale of 0-100.

Results: The overall QODD score was 68.7+13.3 and no deaths were rated in the “terrible to

poor” range (i.e <30). QODD scores were higher for patients with hospice stay of greater than a

week (72.0+11.7) than for patients with a stay of less than a week (60.9+14.0) (p<0.01).

ii

Conclusions: A length of stay of greater than a week may be necessary to benefit maximally

from the holistic care provided by residential hospices.

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Acknowledgements

I would like to give my sincere thanks to Dr. Gary Rodin for his insight and support during

the past two years as well as for taking me on as a student. I would also like to thank Dr. Chris

Lo and the members of my personal advisory committee Dr. Sarah Hales, Dr Lucia Gagliese,

Dr. Camilla Zimmermann, and Dr. Gerald Devins for sharing their time and knowledge.

A huge thank you to Ms. Anne Rydall, Dr. Chris Lo, Dr. Yvonne Leung and to all the

members of the Rodin Research team for their generous support and encouragement though out

this process. Danielle Petricone Westwood and Dr. Amy Kossert, it has been amazing having

the two of you cheer me on from day one.

To the staff of the Kensington Hospice, I am grateful for the encouragement you gave

and for making this project possible. A special thank you to the Director of Care at the

Kensington Hospice Ms. Debbie Emmerson and intake coordinator Ms. Brenda Caldwell for

their commitment to the project and their daily pursuit to provide quality end-of life care for the

terminally ill.

I would like to acknowledge my parents who have always supported my decisions

and encouraged me to be the best and become the best.

To all of those who have contributed to the annual Lifetime Happiness study, thank you

for making my life complete.

I will forever be indebted to all the caregivers who agreed to speak with me. Thank

you from the bottom of my heart. You have all made a difference in my life.

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I was supported by the Institute of Medical Science Entrance Scholarship, Queen

Elizabeth Graduate Scholarship in Science and Technology, and the Ontario Graduate

Scholarship and I‟m grateful to them for their funding. Contributions: Dr. Gary Rodin and Dr. Sarah Hales designed the initial study “The Quality of

Death in Advanced Cancer and Its Relationship to Caregiver Bereavement Outcomes” which

this study is based on. In addition to Drs. Gary Rodin and Sarah Hales, Dr. Chris Lo, Ms. Debbie

Emmerson and I were involved in the design of this study. Drs. Sarah Hales, Gary Rodin, Chris

Lo and Ms. Anne Rydall and Ms. Aubrey Chiu helped me in writing the Research Ethics Board

proposal for this project which was submitted to the University Health Network and the

University of Toronto. Ms. Debbie Emmerson mailed all letters to the caregivers of patients who

had received care from the Kensington Hospice. I recruited all the caregivers and conducted all

QODD interviews with the participants included in this thesis. Dr. Chris Lo as well as all my

committee members were instrumental in helping me analyze the data. All committee members

provided feedback on the written thesis.

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Table of Contents Abstract ………………………………………………………………………………………...…ii Acknowledgements ……………………………………………………………………………....iv

Table of Contents ……………………………………………...…………………………………vi

List of Abbreviations………………………………………………………………………….…..x

List of Figures ……………………………………………………………………………………xi

List of Tables ………………………………………………………………………………........xii

Chapter 1: Background …….………………………………………………....................………..1

1.1 Introduction ……………………………………………….………………………………..1

1.2 Quality of Dying and Death…………………………..…………………………………….1

1.3 Use of Proxy Ratings to Evaluate Quality of Dying and Death …..…………………….…3

1.4 Quality of Dying and Death Questionnaire ………..……………………………………....5

1.5 Development of the Measure …………..………………………………………………….7

1.6 The Dying Period ..……………………………………………………………………..….8

1.7 Studies Conducted Using the QODD Measure ………..…………………………………..9

1.7.1 QODD Measure used in different locations of Care ……………………..…………..9

1.7.2 Studies using the QODD with Multiple Raters …………...…………………………11

1.7.3 Use of the QODD Measure outside North America ...…………………………..…..13

1.7.4 QODD as an Outcome Measure ……...………………………………….………….14

1.7.5 Timing of QODD Questionnaire ………………...………………………….………16

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1.8 Residential Hospice ..……………………………………………………………………...28

1.9 Factors which May Effect Quality of Dying and Death in the Residential Hospice …..….31

1.9.1 Receipt of Palliative Care…...…………………………………………...…………31

1.9.2 Length of Stay in Hospice……...……………………………………………...……32

1.9.3 Age ...……………………………………………………………………….………34

Chapter 2: Rationale ..…………………………………………………………….......................36

Chapter 3: Objectives and hypotheses ……..……………………………………………………37

3.1 Objectives ..……………………………………………………………………………….37

3.2 Hypothesis …..………………………………………………………………………….…37

Chapter 4: Methods …………..………………………………………………………………….38

4.1 Setting……………………..………………………………………………………...…….38

4.2 Study Design ………………………..………………………………………………...…..38

4.3 Subjects ………...…………………………………………………………………………38

4.4 Procedure …...…………………………………………………………………………….39

4.5 Measures Administered to Caregivers …..………………………………………………..42

4.5.1 Demographics Forms ………………………………………………………………..42

4.5.2 Quality of Death ……...…………….………………………………………………..42

4.5.3 Specialized Palliative Care Received ………………………………………………..43

4.6 Timing of Questionnaire ……………..…………………………………………...…….. 43

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4.7 Ethical considerations ………..…………………………………………………...………43

4.8 Analysis ..………………………………………………………………………………….44

Chapter 5: Results …....……………………………………………………………………...…..47

5.1 Recruitment ……..………………………………………………………………………...47

5.2 Patient and Caregiver Sample Characteristics …..………………………………………..49

5.3 Sample characteristics of patients & caregivers and

their relationship to total quality of dying

and death and sub-scale scores……………………………………………………………….54

5.4 Overall QODD …...……..………………………………………………………………...58

5.4.1 Sub-scale: Transcendence ……...………………………………………………...60

5.4.2 Sub-scale: Symptom Control …………………………………………………….61

5.4.3 Sub-scale: Death Preparation ….…...…………………………………………….62

5.4.4 Sub-scale: Connectedness ……..……….………………………………………...65

Chapter 6: Discussion …………………………………………………………………..……….67

6.1 Overall Results …………………………………………………………………………....67

6.1.1 Factors Contributing to QODD ………………………………………………..…69

6.1.2 Sub Scale: Transcendence ….…………………………………………………….72

6.1.3 Sub-scale: Symptom Control ….…………………………………………………74

6.1.4 Sub-scale: Death Preparation ……..……………………………………………...76

6.1.5 Sub-scale: Connectedness ………...……………………………………………....78

6.2 Clinical Implications ..……………………………………………………………….……79

6.3 Limitations …………………...…………………………………………………………...80

6.3.1 Generalizability due to Sampling Constraints ……………………………………81

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6.3.2 Small Sample size ……...………………………………………………………...88

Limitations of Proxy Rated Methodology …………………………………………..…82

Limitations of QODD Questionnaire ……………………………………………….….83

6.4 Future Research ……………..……………………………………………………………84

Chapter 7: Conclusions ……..…………………………………………………………………...88 References ……………………………………………………………………………………….90

ix

List of Abbreviations ANCOVA: Analysis of covariance ANOVA: Analysis of variance COPD- Chronic obstructive pulmonary disease FS-ICU: Family Satisfaction-Intensive Care Unit ICU- Intensive Care Unit ICC- Intraclass correlation coefficients OHIP- Ontario health insurance plan PCU- Palliative care unit QODD: Quality of dying and death QOL- Quality of life

x

List of Figures Figure 1: Flow Diagram of Study Steps Figure 2: Flow Diagram of Study Participation

Figure 3: Interaction between length of stay at residential hospice and receipt of palliative care

for sub-scale death preparation

xi

List of Tables

Table 1: Studies conducted with QODD questionnaire since its development

Table 2: Sample characteristics of Kensington hospice patients

Table 3. Sample characteristics of caregivers

Table 4. Sample characteristics of patients and their relationship (using T-tests, ANOVA and

Pearson correlation coefficients) to total quality of dying and death and sub-scale scores (p

values of relationship, * indicates p <0.05)

Table 5: Sample characteristics of caregivers and their relationship (using T-tests, ANOVA and

Pearson correlation coefficients) to total quality of dying and death and sub-scale scores (p

values of relationship, * indicates p <0.05)

Table 6: ANCOVA Univariate analysis of correlates for overall QODD Table 7: ANCOVA Univariate analysis of correlates of transcendence Table 8: ANCOVA univariate analysis of overall correlates of sub-scale symptom control Table 9: ANCOVA univariate analysis of overall correlates of sub-scale death preparation

xii

Chapter 1: Background

1.1 Introduction

The ageing of our population, the rise in healthcare costs, and an increased awareness of

palliative care have created an imperative to identify end-of-life care that is accessible, cost-

effective and oriented to the needs of patients and families. Systematic research has shown pain

and symptom management, preparation for death, achieving a sense of life completion, and being

treated as a “whole person” to be considered important factors for a good death by caregivers and

health care professionals (Steinhauser et al., 2000). However, only during the past decade has

empirical research emerged evaluating the quality of the dying experience (Curtis et al., 2002).

Measuring the quality of dying and death is an important step in evaluating approaches to end of

life care and outcomes across various settings (e.g., home versus hospital versus hospice)

(Stewart et al., 1999), as well as in disseminating evidence-based end of-life care

recommendations (Patrick et al., 2003). Much of the research assessing the quality of care has

focused on hospital care and care in academic institutions. Research assessing the quality of the

dying experience in community settings is also important, as a majority of patients wish to die in

the community but only about 30% of patients are actually able to do so (CHPCA Fact Sheet.,

2012).

1.2 Quality of Dying and Death

High quality dying has been defined by the Committee on End-of-Life Care of the Institute of

Medicine in the United States as being “free from avoidable distress and suffering for patients,

families, and their caregivers; in general accord with the patients‟ and families „wishes; and

reasonably consistent with clinical, cultural, and ethical standards” (Patrick et al., 2003). Other

1

experts have defined the quality of dying and death as an evaluation of how well a person‟s

preferences for dying and the moment of death agree with other‟s observations of how the

person actually died (Patrick et al., 2001). The quality of dying and death is an evaluation of the

dying experience that is both multidimensional and subjective in nature. The seven broad

domains which encompass the construct are physical experience, psychological experience,

social experience, spiritual or existential experience, the nature of health care, life closure and

death preparation, and the circumstances of death (Hales et al., 2008).

Determination of the quality of dying and death is subjective due to the numerous

social, individual, cultural, and health care factors that influence its evaluation. Not only might

patients‟ own preferences for factors important at the end of life differ based on their past

experiences, personal standards, and cultural values, but the evaluations of others involved in the

dying experience, including family members and health care professionals, will also differ due

to the subjective and dynamic nature of end-of-life evaluations (Steinhauser et al., 2000; Hales et

al., 2012).

The quality of dying and death construct is measurable and distinct from the quality of

life and quality of care constructs. The quality of life at the end of life focuses on the fulfillment

of needs necessary to living in the face of terminal illness, and the quality of care at the end of

life focuses on care and satisfaction with care near the end of life (Patrick et al., 2003). The

nature of health care, life closure, death preparation and the circumstances of death are foci

which are special to this construct (Hales et al., 2008). The quality of dying and death construct

is also unique from other end of life constructs due to its focus on the final days, rather than the

final months, of life (Wallston et al., 1988).

2

Improvement in end-of-life care and in the quality of dying is best grounded in the

perspective of individual patients and their families by focusing on issues considered important

to them (Powis et al., 2004). Thus, investigating the quality of dying of those who have passed

will give clinicians the information they need to make the most salient improvements to end-of-

life care and peoples‟ dying experience.

1.3 Use of Proxy Ratings to Evaluate Quality of Dying and Death

Quality of dying and death research faces the methodological and ethical challenges of

identifying and recruiting dying patients. Dying patients are hard to identify in advance due to

unpredictable disease trajectories and the accuracy of prognoses is often limited, making

reliance on patient evaluations difficult. Furthermore, it is estimated that approximately one in

three persons are unable to be interviewed in the last week of life (Patrick et al., 2001).

Retrospective proxy ratings present a solution to these challenges and have been widely used in

evaluating the quality of dying and death.

A majority of studies have used the evaluations of bereaved family caregivers to

ascertain the quality of dying and death likely due to the belief that family members‟ time and

experience with the patient both during the last days of life and prior to that makes them best

able to determine how well a patient‟s physical and psychological preferences were met during

the last days of life. Furthermore, bereaved family caregivers experience the patient‟s trajectory

of dying themselves through observation as well as by providing end of life care for the patient

(Hales et al., 2012). They may also receive supportive care themselves due to the comprehensive

nature of palliative care.

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Some studies indicate that proxy raters may be better able to reflect patients‟ preferences in

making quality of dying and death ratings for more „observable aspects‟ of the dying experience

such as service provision compared to more subjective symptoms such as death anxiety

(Mayland et al., 2011; Jones et al., 2011 ). In the case of an ideal proxy, the researcher should

be indifferent to whether the proxy or the subject is used. The assumption is that excepting

measurement error, both the proxy and the subject will give the same report (Lynn et al., 2005).

However, due to a “good death” being subjectively determined and the often dynamic nature of

the last days of life, the goal to ascertain the objective truth from a proxy rater may be difficult

and as such the validity of proxy ratings and how much they reflect patients‟ preference may at

times be questioned (Hales et al., 2012). People‟s death-related preferences may change as they

navigate the trajectory of dying. Proxy raters should not only have been attuned to the patient‟s

changing physical needs but also to the patient‟s psychological needs and changes in preferences

during the last days of life.

The potential for cognitive dissonance, response shift after death due to family members

not wanting to remember the deaths of loved ones as terrible experiences and assessments being

shaped by the caregiver‟s own experiences, grief, or by other complicating factors, such as guilt

are also concerns for the validity of proxy ratings provided by bereaved family caregivers

(Hinton., 1996; Patrick et al., 2003). Furthermore, cognitive interview methodology has shown

that family caregivers use multiple perspectives and standards of comparison in making quality

ratings for items on the QODD (Hales et al., 2012). In responding to questions on the QODD

questionnaire, bereaved caregivers most often relied on the patient perspective but all also

incorporated their own perspective and/or that of family and friends. Hales et al (2012) explains

that this may occur because the bereaved caregiver and other family members are participants in

4

their dying process themselves especially as disease progresses and patients become more

debilitated. Family members often become advocates for patients as they help them navigate the

end-of-life experience. Thus, similar to the comprehensive nature of end-of-life care the use of

multiple perspectives by caregivers to evaluate the dying experience may reflect a summated

comprehensive approach rather than individualized proxy-for-patient approach. When capturing

quality of the dying and death, caregivers may reflect on their own experience with the patient‟s

death due to end-of-life care often being a closely shared experience between caregivers and the

patient. Treating quality of dying ratings as summated comprehensive ratings rather than as

individualized proxy-for-patient ratings will allow for better understanding of what these

ratings represent and may allow for more appropriate practical use of these ratings.

1.4 Quality of Dying and Death questionnaire

A 2010 systematic review identified 18 different measures used to evaluate the quality

of dying and death construct. Six of the 18 measures were reported to have some validity and

reliability (Hales et al., 2010). All of the measures used proxy raters to assess the quality of

dying and death of patients retrospectively. Of these six published measures, the QODD

questionnaire was reported to have the most validity and reliability testing.

The QODD semi-structured interview contains 31 items asking the respondent to report

on and rate the quality of dying on aspects covering 6 domains which include: symptom and

personal care (i.e. pain control, control over what was going on, ability to breathe comfortably),

treatment preferences (i.e. having discussions about end-of-life care with physician, having the

means to end life if desired, having the means to prolong life including kidney dialysis and use of

a ventilator), time with family (i.e. spending time with spouse, children and other family), whole

5

person concerns (i.e. keeping one‟s dignity and self-respect, finding meaning and purpose in

life), preparation for death (i.e. feeling at peace with dying, feeling unafraid of dying, having

funeral arrangements in order) and the moment of death. Based on 17 items reported to be

medium and high end-of-life priorities, Downey et al (2010) have suggested focusing on four

latent variables: Symptom Control (i.e. pain control, control over what was going on, ability to

breathe comfortably); Preparation (i.e. visiting with spiritual advisor, having funeral

arrangements in order, avoiding life support, having health care costs covered); Connectedness

(i.e. sharing physical expressions of affection, spending time with family and friends); and

Transcendence (i.e. feeling unafraid of dying, feeling at peace with dying, feeling untroubled

about strain on loved ones). The questionnaire asks raters to make judgments based on the

patient‟s last 7 days or if the patient was unconscious or unresponsive throughout the last 7 days,

over the last month before death (Patrick et al., 2001).

The QODD questionnaire uses retrospective proxy ratings to evaluate the quality of dying

and death and was designed to be administered to caregivers or healthcare professionals. The

original conceptual model by Patrick et al. included obtaining patients‟ own preferences for

dying which could then later be compared to quality of dying ratings made by proxy respondents

(Patrick et al., 2001). The methodological and ethical challenges associated with identifying and

interviewing dying patients led Patrick et al. (2001) to suggest retrospective evaluation by proxy

raters as the most practical method in obtaining quality of dying and death ratings. Further, they

explained that conducting these ratings after death would capture the full experience of dying

(Curtis et al, 2013). Moreover, evaluations from the patients themselves often have numerous

challenges and limitations and are likely to be unrepresentative and/or biased due to many

patients being too physically ill and/or mentally incapable to participate (Addington-Hall et al.,

6

1992). In fact, Patrick et al (2003) stopped recruiting dying patients and limited obtaining

QODD ratings to caregivers in a study evaluating the quality of dying and death of community

hospice patients due to the previously mentioned challenges as well the high attrition rate. A

majority of eligible patients were unable to participate due to illness severity (28%) and due to

delirium and fatigue that would interfere with their ability to participate in an interview (25.5%).

Other patients refused to participate due to patients‟ reporting overall poor health (13.2%), lack

of interest in or time (13.8%) for participating, and family members‟ reporting poor health or

lack of time on behalf of the patient (11.1%).

1.5 Development of the Measure

The 31 item QODD questionnaire was designed using in depth literature review, focus groups,

and qualitative studies of patients, family members, and clinicians (Patrick et al., 2001). Participants

are asked to rate each item on a scale from 0 to 10, where 0 was a terrible experience and 10 was an

almost perfect experience (Patrick et al., 2001). The questionnaire was validated in two samples: a) a

community-based study of 205 patients who died in Missoula County; and b) a hospice based study

of 95 patients. This initial study showed support for cross-sectional and construct validity of the

QODD questionnaire as well as internal consistency reliability. The QODD total score was

significantly associated in the directions hypothesized with constructs related to the quality of dying

and death. Death at home, less symptom burden, better symptom treatment, better communication,

and higher satisfaction with care were all associated with higher QODD scores (Curtis et al, 2002).

Using a validated tool the Memorial Symptom Assessment Scale (MSAS), the investigators found a

significant correlation between the MSAS and the QODD score. Higher total symptom burden was

correlated with lower QODD scores,

7

there were also significant correlations between the QODD score and the MSAS psychological

sub-score and the MSAS physical sub-score. Even when the symptom-related items of the

QODD questionnaire were omitted from the total score, these correlations remained statistically

significant.

1.6 The Dying Period

Ideally ratings of quality of dying should pertain to the period leading up to death and the

moment of death, however there is ambiguity regarding when the transition to the dying phase

occurs and the length of time which should be considered when evaluating the quality of dying

and death (Hales et al., 2010). In making such evaluations, the developers of the QODD

questionnaire have suggested that raters (family members or health care workers) be asked

whenever possible to make ratings based on the patient‟s last week of life to facilitate a

standardized reporting period. They have argued that while this time period is arbitrary and the

actual time period of “dying” depends on the trajectory of the dying process and is often unique

to every individual, picking one time period however allows standardization across individuals.

If the patient was unable to communicate in the last week of life, ratings of the quality of dying

may be unobtainable and a one-month recall period would be necessary. The developers have

explained that although arbitrary, the consistent time periods allows for comparison and

summarizing reports and ratings across patients and raters (Curtis et al., 2002). Future research

may benefit from asking end-of-life practitioners to identify the time period they consider to

best capture the end-of-life experience. However, identification of such a time period is again

complicated by the varying and unique nature of the dying trajectory for different individuals.

An alternate option might be for end-of-life practitioners to individually identify what they

8

believe to be is the dying period for each individual patient, this approach would however limit

comparability between ratings of different patients.

1.7 Studies Conducted Using the QODD Measure

Since the development of the measure in 2001, the QODD questionnaire has been used to

evaluate over 4,000 deaths in multiple settings including the home, palliative care unit, and

intensive care unit settings, in multiple regions and countries and has gained some prominence as

a leading outcome measure in end-of-life care (Curtis et al., 2013).

1.7.1 QODD measure used in different locations of care

The initial study conducted by Curtis et al (2002) recruited family members of patients

who died in Missoula, Montana. The sample included home, hospital, hospice house and nursing

home deaths. Decedents died of a diverse array of conditions including cancer, dementia,

cardiovascular disease and chronic liver disease. Death at home, less symptom burden, better

symptom treatment and communication, and higher satisfaction with care were associated with

higher QODD scores in this sample. Death at home has also been identified as a significant

predictor of better quality of dying and death in a study evaluating the quality of dying and death

of metastatic cancer patients who died in Toronto Canada and in a study evaluating the quality of

dying and death of metastatic cancer patients who died in Jerusalem Israel, with those patients

who died at home having higher QODD than those who died in hospital (Hales at al., 2014;

Braun et al., 2014).

Few studies have been conducted to identify determinants of better QODD of patients who

die in community settings even though dying in the community has itself been identified as

9

a predictor of better quality of dying and death. One study of quality of dying and death of

Seattle hospice patients who died at home found that better quality of dying and death was

associated with greater satisfaction with the amount of time providers spent with patients, better

ratings of care and better ratings of the moment of death (Patrick et al., 2003). Overall quality of

dying and death was found to be high for patients who died at home with hospice care similar to

the studies mentioned above.

Many of the studies using the QODD measure have evaluated quality of dying and death

in the ICU setting with the objective of understanding and improving the dying experience of

patients who die in this setting. Glavan et al (2008) using the modified version of the QODD for

the ICU identified that better QODD scores were associated with documentation of a living will,

absence of cardiopulmonary resuscitation performed in the last hour of life, withdrawal of tube

feeding, family presence at time of death, and discussion of the patient‟s wish to withdraw life

support during a family conference. Older patient age and being seen by neurology or

neurosurgery attending physicians have also been identified as a significant predictors of better

quality of dying and death in the ICU setting (Lewis-Newby et al., 2011; Kross et al, 2014). In a

study conducted in the ICU setting using nurse ratings to compare quality of dying and death

between patients with chronic obstructive pulmonary disease (COPD) with those who died from

other illnesses found quality of dying and death of patients who died of COPD to be significantly

lower on some items such as dyspnea and anxiety (Goodridge et al., 2009).

Receipt of palliative care has been suggested as a possible correlate of quality of dying

and death in different settings of care. A study conducted by O‟Mahony et al (2010) in the ICU

setting indicates that better QODD is associated with being seen by a member of the palliative

care team in addition to standard care received by critical care clinicians. In Hales et al‟s (2014)

10

study however receipt of palliative care was not associated with better QODD. The authors

however explain that oncologists likely provided comprehensive cancer care. Association

between palliative care and quality of dying and death may vary by illness type and location of

care at the end of life. For cancer patients, only those suffering from the most severe symptoms

and have significant disease burden may receive early palliative care. Many patients with non-

cancer diagnosis often do not receive palliative care as clinicians have difficulty identifying

patients as being terminal due to unpredictable disease trajectories. A study by Cohen et al

(2011) comparing referral patterns to palliative care in two Canadian hospitals found that for

cancer and non-cancer patients, referral to palliative care seemed to depend on “the coincidence

of being admitted to the right hospital” even though cancer patients were more likely to be

referred to palliative care in both hospitals. Referrals to all palliative care services were higher

in the hospital with a palliative care unit.

1.7.2 Studies using the QODD with Multiple Raters

Studies have been conducted using the QODD measure to determine how ratings may

vary between different raters. A majority of studies have used the evaluations of bereaved family

caregivers to ascertain the quality of dying and death likely due the belief that family members‟

time and experience with the patient both during the last days of life and prior to that makes them

best able to determine how well a patient‟s physical and psychological preferences were met

during the last days of life. Little information is known about how ratings of QODD may differ

between different family members. One study conducted by Mularski et al (2004) to measure

agreement among family members in evaluating the quality of dying and death of patients who

passed away in ICU found moderate concordance among family members for ICU-QODD.

11

Higher concordance was seen for items which asked about objective events or circumstances

including items in symptom control and death preparation, however lower concordance was seen

for items in the transcendence domain which asks about death related distress. Concordance in

this study was calculated using the intraclass correlation coefficients (ICC). Concordance was

defined as high if the ICC > 0.6, moderate if the ICC ranged from 0.3 to 0.6, and low if the ICC

< 0.3. While ratings between different family members may differ, the authors argue that

identifying the family member that knew the patient best or spent the most amount of time with

the patient during the patient‟s last days of life may help accurately capture the patient‟s dying

experience (Mularski et al., 2004).

Clinicians are partners to family members in navigating the trajectory of death especially

in palliative care settings. There has been inconsistency in findings as to whether the ratings of

clinicians and family members show concordance. Levy et al (2005) compared perceptions of the

quality of dying and death in the ICU across family members, nurses, resident physicians, and

attending physicians using the modified version of the QODD designed for the ICU setting and

found nurses and residents to be more critical (rated QODD as poorer) in making ratings of

QODD compared to family members and attending physicians. However, when this study was

replicated in the Netherlands the same results were not seen and only differences in pain control

between physicians and family members were noted (Gerritsen et al., 2013). Differences in

ratings between family members and healthcare professionals is troubling and may be a result of

these two groups viewing death differently. More likely however, variability in evaluations is

due to variance in access to information about the patient that different raters had, variances in

time spent with the patient and witnessing different events in the patient‟s trajectory of dying.

Assessment that combine ratings of family members and healthcare professionals might enrich

12

the appraisal of quality of dying and death and may help in capturing the actual experience of

the patient more completely.

1.7.3 Use of the QODD Measure outside North America

Two studies have been conducted using the QODD questionnaire outside of North

America with non-English speaking populations. Gerritsen et al (2013) translated the QODD

questionnaire to Dutch and back-translated from Dutch by a native English speaker. Their results

show that QODD is generally perceived as being in the “good to perfect” by family members and

caregivers of patients who die in ICUs in the Netherlands. The high rating of QODD results was

different from the findings of Curtis et al (2011) whose findings of a large quality improvement

intervention trial in the U.S. showed lower ratings of QODD in the ICU setting. The

investigators concluded that the data was reflective of the current Dutch situation but that results

of perceived QODD may differ in other parts of the world. Previous research has suggested that

satisfaction of ICU care may be higher in the Netherlands than the U.S. which may help explain

why quality of dying and death was also found to be higher in the Netherlands in this setting, as

previous studies have found greater satisfaction with care to be associated with higher quality of

dying and death (Curtis et al, 2002). Nonetheless, the study has important limitations which must

be considered including that the translated questionnaire was not validated prior to use (the

Dutch version of the QODD was an exact translation of the original text) in this population and

recruitment occurred from only three centers. Similarly, differences in quality of dying and death

by country have also been seen in patients who died of cancer. Braun et al (2014) found QODD

scores to be much lower in a study of Jewish cancer patients in Israel compared to QODD results

reported by Hales et al (2014) in Canadian study conducted in Toronto. Differences in results

may be due to variation in quality of care and services available, as well as cultural and religious

13

attitudes toward death, illness, and the end of life may also influence results. For example, future

studies would benefit from asking caregivers about their attitudes towards death using

questionnaires such as the Death Attitudes profile so that these attitudes can be compared across

populations to determine if these attitudes can explain differences in QODD scores.

Even though the QODD questionnaire has been used outside of North America, it has

not been validated with populations outside of North America. Local adaptation of the QODD

questionnaire and modifications may be necessary in parts of the world where care provided and

patient family decision making styles markedly differ from the West. Due to the subjective

nature of the dying experience, cultural norms regarding dying and death may greatly affect the

evaluation of the dying experience and some of the questions asked in the QODD may be

perceived as irrelevant by people living outside of North America for deaths occurring outside of

North America. Furthermore, the QODD questionnaire may not capture aspects of the dying

experience that may be considered significant by people living outside of North America. Certain

patient preferences for death have been shown to be universal such as freedom from pain and

suffering at the end of life, expectations of the dying process such as whether death is expected

or not and whether the person is asleep or awake has been shown to differ by culture (Hales et al,

2008). Differences in the quality of care and resources available may also have a significant

impact on the dying experience and in evaluation of the dying experience. Investigators should

therefore exercise caution when comparing QODD ratings across cultural and geographic

boundaries.

1.7.4 QODD as an Outcome Measure

14

There is some controversy as to whether the QODD is responsive to interventions that

improve the quality of dying (Curtis et al, 2013). The QODD questionnaire has been used to

measure the effect of the same ICU intervention in two studies. The quality of dying and death

of ICU patients who died after a transition to comfort measures have been compared to scores

for patients who died in the setting of full support. The pilot study of the quality improvement

intervention showed significant improvements in nurse ratings of QODD but not in family

ratings of QODD (Cutis et al., 2008). A randomized trial of the same quality-improvement

intervention showed no effect on family and nurse assessed QODD. This may suggest that the

QODD is perhaps not sensitive enough to capture such changes (Curtis et al, 2008). The Family

Satisfaction-ICU which was used in the study also showed no changes to the intervention. No

significant changes in the number of ICU days before death and time from ICU admission to

withdrawal of mechanical ventilation were also seen indicating that the intervention itself may

not have been effective. Therefore as the responsiveness of the QODD measure to interventions

is unknown, it is difficult to conclude for certain why no changes followed the intervention. The

authors concluded that they are unable to know for certain whether there might have been

important changes that these instruments are unable to detect.

Curtis (2013) explains that while the QODD may not be ready for use as a primary

outcome in intervention studies as there is still uncertainty as to whether the quality of dying is

a cohesive construct as well as to whether QODD is responsive to interventions that improve

the quality of dying, further study is needed to understand if QODD may be a changeable

outcome. Future interventions should include other validated measures which have been shown

to be responsive to interventions along with the QODD so that investigators are able to better

15

understand if the intervention itself was not successful or whether the QODD is not a sensitive

enough tool to detect changes.

1.7.5 Timing of QODD Questionnaire

There has been great variability in when the QODD was administered to both family and

professional caregivers. Most studies have administered the QODD questionnaire within days to

a month of patient death, however other studies have administered the QODD questionnaire up

to three years after patient death. Lack of adherence to a universal time span at which family

members and health care professionals complete retrospective assessments such as the QODD

limits comparability between studies. Investigators have difficulty ascertaining whether

differences and similarities in results are due to actual phenomena or due to inconsistencies in

methodology. An appropriate next step would be determination of an appropriate time frame for

when QODD questionnaires should be completed. Nonetheless, suggestion of such a time frame

is complicated by the possibility of influence by emotional state and recall ability. Further

research is necessary to determine when an optimal time would be to conduct QODD interviews

with caregivers. Using focus groups and qualitative interviews with family caregivers and

clinicians, researchers may be able to ascertain the optimal time frame for conducting these

interviews.

Table 1: Studies conducted with QODD questionnaire since its development

16

Source Setting and Population Objective Source/ Results Measures Time from Comments Population /type of respondents death to

death used administer

evaluated QODD

Curtis et al, U.S.: 252 To describe Family QODD QODD 1-3 years Patients 2002 Missoula, patients the validity members total score MSAS after patient recruited

Montana enrolled in of the demonstrat death from only the QODD ed good one county. Missoula instrument cross- Recruitment Community and to sectional rate was only Demonstrat identify validity and 27%, there ion Project, clinical internal may be patients correlates consistency important passed of a high . Average differences away in quality QODD was between many death. 67. Death those who different at home, participated settings less and did not including symptom participate. home, burden,

nursing better

homes, symptom

ICU, and treatment,

emergency better

communica

tion, and

higher

satisfaction

with care

were

associated

with higher

QODD

scores.

Patrick et U.S.: Two 96 hospice To evaluate Family Higher QODD 3 months Patients al, 2003 community patients the quality members QODD Quality of after patient recruited

hospice of dying scores were Care death from only programs in and death associated report one city, Seattle, of patients with reports results may Washingto who die at of not be n home with satisfaction generalizable hospice with the to other care. amount of locations. time

providers

spent with

patients,

how often

providers

explained

treatments,

better

ratings of

care,

quality of

life during

17

last days,

and

moment of

death.

Mularski et U.S.: ICUs 38 ICU To measure Family Concordan 23 item 4months – Long al, 2004 in a patients agreement members ce among ICU- 1 year after differences

university among family QODD patient in time when teaching family members death different hospital members in for ICU- family and an evaluating QODD members academic the quality score was completed Veterans of dying moderate. QODD Affairs and death questionnaire Medical of loved . Only Centre ones. patients who had a length of stay in the ICU of at least three days were included. In excluding patients who are admitted and died in a shorter time frame, investigators may have missed important differences in responses or concordance.

Hodde et U.S.: ICUs 178 ICU To Nurses Nurse 14 item Not Study al, 2004 at patients determine assessment ICU- specified conducted in

Harborview feasibility s of 14- QODD one hospital Medical of using item and findings Centre nurse QODD is a may not ratings of feasible generalize to quality of tool for other dying and assessing hospitals or death, to the quality geographic assess of dying locations. quality of and death Three items end-of-life ratings in of the QODD care in the the ICU. that were not ICU and to Higher answered by determine QODD >=50% of factors total scores nurses and an

18

associated were additional with nurse associated three items assessment with not that were not of the having answered by quality of cardiopulm 40–50% of dying and onary nurses. death for resuscitatio Although patients n, someone nurses could dying in the being not answer ICU. present at all questions, the moment we questions of death; retained and being because cared for these items by were neurosurger identified as y or important to neurology some services. patients and families.

Mularski et U.S.: four 38 ICU To rate the family QODD was 23 item 4 months-1 Patients al, 2005 ICUs of Patients quality of members moderately ICU year dying in the

either a dying and favourable QODD ICU in only university death in the with two hospitals teaching ICU setting average in one hospital or and to score of 60. geographic an identify Higher ICU area were academic aspects of QODD included, Veteran the ICU scores were results may Affairs experience associated not be Medical associated with generalizable Centre with higher control of to other quality of pain, regions. Only dying control of patients who ratings. events, were in feeling at hospice for peace with three days or dying, and greater were keeping included, one‟s important dignity and differences self- in responses respect. or associations for patients who died < 3 days after admission to an ICU may have been missed.

19

Levy et al, U.S.: ICUs 68 ICU To compare Family Family 23 item 48 hrs- Small sample 2005 at patients perceptions members, members ICU clinicians size,

Vanderbilt of the attending and QODD 1 month- clinicians University quality of physicians, attending family and Hospital dying and residents, physicians members caregivers and St. death in the nurses gave more completed Thomas ICU across favourable QODD Hospital. nurses, ratings than questionnaire resident nurses and s at different physicians, residents. times from attending patient death physicians which may and family explain some members differences in results. Not all clinicians would have spent the same amount of time with the patient.

Wall et al, Canadian 275 To refine Family FS-ICU FS-ICU 4 weeks The FS-ICU 2007 cohort: 3 patients the Family members was 21 item after was designed

ICUs from Satisfaction Nurses significantl QODD patient‟s for to be Western in the y correlated death completed by Canada Intensive with the caregivers of Care Unit Family- the general U.S. (FS-ICU) QODD ICU cohort: survey and total score population, Harborview develop a and QODD was Medical validated individual designed Center, a method for QODD specifically 350-bed scoring the items such to be by tertiary instrument as quality caregivers of hospital of care by patients who affiliated all passed away, with the providers. comparabilit University y of scores of of the two Washingto measures n may be limited as they were designed for different populations.

Curtis et al, U.S.: 275 To evaluate Family We found 21 item 4-6 weeks Study has a 2008 Washingto patients had the members no QODD “before-after

n family effectivenes Nurses significant FC-ICU design”, university- QODD s of a improveme randomized

20

based, questionnai multi- nt in family control trial inner-city re faceted assessed is considered 350-bed completed quality quality of the gold level I 523 improveme dying or in standard for trauma patients had nt family testing the center with nurse intervention satisfaction effectiveness 65 ICU QODD to improve with care, of such an beds questionnai palliative we found intervention. re care in the significant QODD completed ICU improveme questionnaire nt in nurse- has not assessed previously quality of been tested dying and to determine reduction in if responsive ICU length to change. of stay with

an

interventio

n to

integrate

palliative

care in the

ICU

Glavan et U.S.: ICUs 356 To identify Family Higher QODD- 1-2 months Study al, 2008 at ten patients chart-based members QODD-22 22 population

hospitals in markers scores were was largely the that could associated white and northwest be used with results may United as measures documentat not be States. for ion generalizable improving of a living to other the quality will, populations. of end-of- absence of Study design life care cardiopulm is cross- onary sectional, resuscitatio therefore n cannot performed assume that in the last associations hour of life, identified are withdrawal causal. of tube

feeding,

family

presence at

time of

death

, and

discussion

of the

21

patient‟s

wish to

withdraw

life

support

during a

family

conference.

Goodridge U.S.: 3 103 To compare Nurses QODD QODD Within 24 Response et al, 2009 ICUs in patients nurse scores were hours of rate was only

western ratings of significantl patient 50% and Canada QODD y lower for death may be between patients susceptible patients with COPD to response with COPD than for bias. and those those who Generalizabil who die died from ity of from other other findings is illnesses in causes on limited as critical care several study was settings survey conducted in items three ICUs in including one western dyspnea, Canadian anxiety and city. Several the belief questions that the were deemed patient had difficult to been kept answer by alive for caregiver and too long. no response was provided indicating the need to refine the QODD.

O‟Mahony, U.S.: ICU 157 To report Family Family ICUQOD 48 hrs- Study was 2010 at patients on the members members D physicians conducted

Montefiore preliminary and nurses rated the 1 month- only in one Medical findings of level fam institution Center in integrating of the members which limits the Bronx, a palliative patients‟ generalizabili New York care team peacefulnes ty of results. to an s and their Respondents intensive ability to were non- care unit say blinded and goodbye to knew if they the patient were seen by as the palliative significantl care.

22

y worse

than

nurses.

Smith et al, U.S.: 149 To Family Few QODD 4 months- 3 Interviews 2011 Oregon two terminally determine members significant years were

large ill patients: if there is a differences completed medical 52 difference were noted between 4 centers, Oregonians in the in items months-3 three large who quality of that years of hospices received dying and measured patient PAD, 34 death domains of passing who between connectedn away, requested patients ess, analysis was but did who transcenden however not not receive receive ce, and done to PAD, and PAD, who overall determine if 63 who did requested quality of QODD not pursue but do death. ratings PAD not receive Those differed by PAD, and receiving length of who do not PAD time from pursue prescription patient PAD. s had passing away higher to interview. quality

ratings on

items

measuring

symptom

control and

higher

ratings on

items

related to

preparedne

ss for death

than those

who did not

pursue

PAD.

Lewis- U.S.: ICUs 275 ICU To assess Family Families of 23 item 4-6 weeks Patient age Newby et at patients differences members the oldest ICU- after patient may be a al, 2011 Harborview in patients QODD death proxy for

Medical measureme reported FS-ICU other factors Centre nt higher that vary characterist levels of with age ics of the overall such as QODD and satisfaction communicati FS-ICU with ICU on style with across care and clinicians

23

patients of reported and attitudes different higher toward death age groups quality which was dying and not included death in this study. experiences Majority of of loved patients had ones. a trauma diagnosis, results may not be generalizable to patients who die of other conditions in the ICU.

Curtis et al, U.S: 15 2318 To evaluate Nurses QODD QODD Within 3 Study was 2011 hospitals patients the Family scores FS-ICU days of limited to

with ICUs effectivenes members showed no patient one region of in Seattle s of a change death the United or Tacoma quality- with the States, improveme interven- results may nt tion. not intervention generalize to to improve other intensive regions. care unit Randomizing end-of-life hospitals also care. resulted in unequal distribution of patient characteristic s between the control and interventions groups.

Hales et al, Canada: 22 Cancer To Personal Caregivers Cognitive 8-10 First study to 2012 Princess Patients understand Caregivers use interview months use cognitive

Margaret with how multiple methodol interview Hospital in gastrointest bereaved perspective ogy to methodology Toronto inal cancer caregivers s and evaluate to understand or lung assess the standards QODD how cancer quality of of questionn caregivers dying and comparison aire. make ratings death in of QODD. experience evaluating Small sample with the the quality size, QODD of dying ethnically measure using the homogenous

24

QODD participants questionnai are re. limitations. Bereaved Cognitive caregivers interviewing most often process may use patient be inherently perspective difficult for but all also some incorporate participants d their own and answers perspective may not be and/or that accurate. of family

and friends.

Gerritsen et Netherland 100 To evaluate Family QODD is Part 2 FS- Family Dutch al, 2013 s: Adult patients the members generally ICU member, 1 translated

patients experience ICU perceived QODD month after QODD was who died in of families physicians as being passing not validated the ICU of patients Nurses good by away of in this after a dying in the family loved one, population treatment ICU and members attending (exact period > also and nurse and translation of 48 hours experiences caregivers physician English of ICU of patients. within 24 QODD). caregivers One-third hours of Additional in The of the patient questions Netherlands relatives passing may be . reported away needed to To look at that they adequately the had capture the participatio actively Dutch n of the participated experience. family in in making

decision- end-of life

making decisions

with regard

to

withholding

and

withdrawin

g therapies

and

satisfaction

with their

role in that

process

Hales et al, Canada: 402 cancer To evaluate Personal Majority of QODD 6 months Recruitment 2014 downtown patients the quality caregivers QODD The only from

Toronto of dying ratings Texas downtown including and death favourable. Revised Toronto,

25

Princess of Lowest Inventory study sample Margaret metastatic QODD of Grief was primary Hospital, cancer subscale (TRIG) Canadian Toronto patients scores were Part II born and of General symptom Impact of high socio- Hospital, control Event economic Toronto (rated Scale- status, results Western “terrible” to Revised may be Hospital, “poor” by (IES-R) limited in Mt. Sinai 4.9%) and Beck generalizabili Hospital transcenden Depressio ty. ce (rated n Recruitment “terrible” to Inventory rate was only “poor” by -II (BDI- about 30% of 18.5%). II) eligible Home caregivers. deaths were

associated

with better

symptom

control,

death

preparation,

and overall

quality of

dying and

death.

Braun et al, Israel: 95 patients To evaluate Primary Overall QODD 8-10 Study sample 2014 Jerusalem the quality personal QODD was months is relatively

Oncologica of dying caregivers regarded as small and l Institute and death poor by culturally in cancer almost half homogenous. patients in of the QODD Israel and caregivers. questionnaire its Better was not relationship ratings of validated in to place of QODD was this death and associated population socio- with home prior to use. demographi deaths,

c older

characterist caregiver

ics of age, female

primary caregivers

caregivers and spouse

and caregivers.

patients.

Kross et al., U.S. : Total To Family Patients QODD Nurses-72 The type of 2014 Seattle- number of determine members, with FS-ICU hrs physician

Tacoma patients whether nurses neurology Family- 1 patients were ICU 1185, ICU or to 2 months seen by were

26

unclear as attending neurosurger likely to for how specialty is y attending influenced many associated physicians by other patients with quality had higher characteristic QODD of dying family and s such as completed and death nurse symptom in the ICU ratings of severity and chart QODD which was indicators than not of palliative patients of accounted care attending for in this physicians study. specializing

in medicine

(P < .05).

Patients

with

surgery

attending

physicians

had lower

nurse

ratings of

QODD

than

patients

with

medicine

attending

physicians.

Patients

with

surgery

attending

physicians

had fewer

documente

d indicators

of palliative

care.

27

1.8 Residential Hospice

Inpatient palliative care in Canada is provided in residential hospices, nursing homes,

and hospitals (Towns et al., 2012). Community residential hospices are essential for people

living with a life-threatening illness who can no longer be cared for in their own homes. They

offer compassionate and cost-effective quality care for people who do not require the expensive

and highly medical, technical care available in an acute care hospital unit but may still require

management of physical and psychological symptoms experienced by terminally ill patients at

the end of life. They are designed to meet the needs of a patient and his or her loved ones when

the curative medical approach is no longer achievable. A residential hospice provides 24-hour

comprehensive holistic care and support, including medical and nursing care, as well as

psychosocial/spiritual care). Palliative care services are provided by an inter-professional team

with palliative care expertise in a home like setting for the individual and their family members

at no cost to the user (Hospice Palliative Care Ontario Community Residential Hospice

Standards., 2012).

There were four residential hospices in Ontario in 2005, as of 2014 there are thirty five

residential hospices now in the province of Ontario (Sussman et al., 2011). This growth was a

result of the Ontario government announcing Ontario's End-of-Life (EOL) Care Strategy to

improve end-of-life care services at home and in the community. One objective of the EOL Care

Strategy was to shift care of the dying from the acute setting to appropriate alternate settings of

care in the community such as residential hospices. The majority of patients admitted to

residential hospice have a cancer diagnosis and most are elderly while one third are <65

(Sussman et al., 2011). Community residential hospice‟s have up to a maximum of 10 in-patient

beds and are required to meet regulated health care professional staffing requirements as well as

28

follow relevant provincial and federal legislation. They are partially funded by the Ministry of

Health and Long Term Care and partially from charitable donations and fundraising (Hospice

Palliative Care Ontario Community Residential Hospice Standards., 2012).

A residential hospice setting may present a cost-effective compromise between the home

and hospital settings for dying patients and their families. While a home death may be idealized

by many people, it can be emotionally difficult and costly for the family, and the patient may

still require transfer to hospital if symptoms cannot be adequately managed at home. When

asked, most people have indicated that they would prefer to die at home in the presence of loved

ones, yet almost 70% of Canadian deaths occur in a hospital (CHPCA Fact Sheet., 2012).

Current end-of-life care research increasingly suggests that Canadians prefer to die at home or in

their home communities (e.g. residential hospice and in long-term care facilities) instead of in

hospital settings (Bacon., 2008). However limited access to comprehensive home palliative care

services, lack of social support and burden on caregivers make it difficult for terminally ill

patients to die in the community. Lack of advance care planning, denial of illness, unawareness

of approaching death, unpredictable disease trajectories and errors in prognostication can also

lead to emergency admissions to hospital at the end of life (Hunt et al., 2014). Furthermore,

patients having insufficient information or poor understanding of their future circumstances

earlier on in the disease trajectory may hinder advance care planning and prevent people from

dying in the community.

Sussman et al (2011) have reported that the costs of residential hospice beds are

significantly less than hospitalization. In fact, the cost of delivering hospice palliative care in a

Residential Hospice bed is $300/day in comparison to $1,000/day in an acute care hospital bed

(Hospice Greater St John Residential Hospice “REALIZE THE DREAM” Business Plan., 2008).

29

Patients receiving appropriate care in a residential hospice may also be less likely to make

unnecessary visits to the emergency at the end of life. In fact, nearly all patients admitted to

residential hospice die in the residential hospice (Hospice Care in Ontario., 2011).

Hospice care in the U.S. includes home palliative care services, hospital out-patient

hospice programs, and residential hospice care for patients with a prognosis of up to six months

(Vogel., 2011). American studies indicate that longer length of receipt of hospice care, compared

to usual care in hospital settings, may allow for more personalized end-of-life care in accordance

with the wishes of patients and their families (Waldrop et al., 2006). While residential hospices

in Canada are not equivalent to hospice programs in the U.S., patients admitted to residential

hospice may also benefit from longer length of receipt of care. Residential hospices in Canada

accept people with a prognosis of three months or less (Hospice Care in Ontario., 2011).

Using questionnaires, qualitative interviews with caregivers and assigning standard

unit costs to resources used according to Statistics Canada, Dumont et al (2009) reported that

in Canada the greatest costs for end-of-life patients were from inpatient hospital care

(46.6%), home care (24.5%), and ambulatory care (10.8%). The study also reported that a

large part (66.4%) of costs supported by the family was attributable to caregiving time and

home care. Taking care of patients at home means that caregivers often have to take time off

from work, thereby losing income generated from working for pay. Thus, the comprehensive

services available at a residential hospice may mean that fewer caregivers have to take time

off from working.

30

1.9 Factors which May Effect Quality of Dying and Death in the Residential

Hospice Setting

1.9.1 Receipt of Palliative Care

A randomized controlled study conducted in the U.S. on 322 patients newly

diagnosed with advanced cancer showed that patients who received palliative care interventions

along with standard oncology care had better quality of life and mood compared to the patients

who received only oncology care (Bakitas et al., 2009). Moreover, patients with advanced lung

cancer who received integrated palliative care early on during treatment showed clinically

meaningful improvements in quality of life and mood (Temel et al., 2010). These studies suggest

that receipt of palliative care, especially early on in the disease trajectory and for a longer period

of time, may lead to improvements in physical and psychological symptoms during the illness

trajectory. However, further research is needed to determine if early receipt of palliative care also

has an impact on quality of dying and death.

An integral aspect of palliative care includes advance care planning (ACP). ACP

encourages patients to reflect on their beliefs and values and allows patients an opportunity to

discuss their wishes for end-of-life care with professional and personal caregivers making it

more likely that these wishes are met at the end of life (Detering et al., 2010). ACP and early

death preparation may lead to better quality of dying and death. In fact using the Comfort

Assessment in Dying with Dementia scale, one study examining the association between

advance care planning and quality of death of nursing home patients with dementia found better

dying to be associated with advance care planning (Vandervoort et al., 2013). The authors

however concluded that advance directives may have a greater effect on emotional rather than

physical distress or dying symptoms (e.g. pain or shortness of breath).

31

Another study investigating the impact of advance care planning on end of life care in

elderly patients found that for patients who were randomized to receive ACP end of life wishes

were much more likely to be known and followed than for those patients in the control group.

Families of patients who received ACP also rated the quality of their loved ones end-of-life

experience as being more positive as measured by the Quality of End of Life Care

questionnaire (Detering et al., 2010).

In a study conducted to evaluate the quality of dying and death of patients with

metastatic cancer and its relationship to length of specialized palliative care received in Toronto

Canada, late or no referral to palliative care was associated with poorer death preparation but

not with poorer overall quality of dying and death (Hales et al, 2014). The authors postulate that

the lack of association between palliative care and better quality of death may be due to

oncologists providing excellent end-of-life care and support for patients and/or the fact that

those receiving palliative care may be the most distressed patients with more complicated

disease. Furthermore, those dying at home with shorter palliative care involvement had better

quality deaths compared to those dying at home with longer palliative care.

1.9.2 Length of Stay in Hospice

The average length of stay in a Residential Hospice bed in Canada is 17-22 days and

24 days in Ontario (Hospice Greater St John Residential Hospice “REALIZE THE DREAM”

Business Plan, 2008; Hospice Care in Ontario, 2011). Length of hospice stay may be an important

factor in contributing to quality of dying and death in the residential hospice setting. Studies

conducted in the U.S. and Taiwan in different settings of care have found length of hospice care to

be associated with caregivers‟ report of patient‟s quality of dying. For example,

32

Cheng et al (2012) using multivariate regression analysis identified longer unit length of stay (>7

days) in a Taiwan palliative care unit for cancer patients to be associated with better death scores

using the Good Death Inventory. Poorer quality of dying may be due to patents with more severe

illness burden, unpredictable disease trajectories and greater distress being transferred closer to

the end of life. Late transfers to hospice may also result in discontinuity of care when the patient

is facing imminent death, transfer to a new set of caregiver at this point may be inappropriate

and may even be frightening (Christakis et al., 1994).

Furthermore a number of studies have determined that caregivers report patients as

having had greater benefit from hospice programs including home palliative care services,

hospital out-patient hospice programs, and residential hospice care with longer receipt of care.

For example, one study which looked at the length of stay and bereaved family members‟

perceptions of the timing of hospice referral showed that respondents‟ perception of late hospice

referral was associated with statistically significant differences in unmet needs, number of

concerns about the quality of hospice care, and ratings of the quality of end-of-life care provided

(Schockettet et al., 2005). Similar results were seen in a study conducted by Teno et al (2007) in

which bereaved family members‟ perception of being referred „„too late‟‟ to hospice was found

to be associated with more unmet needs, higher reported concerns, and lower satisfaction.

Results of these studies indicate that short length of stay might mean that patients do not receive

full benefit from the comprehensive services hospice care provides.

Studies indicate that patients receiving hospice or palliative care compared with

conventional care for a greater period of time at the end of life have better pain management,

symptom management, greater satisfaction with care and greater caregiver satisfaction (Kayser-

Jones et al., 2006).However, systematic research looking specifically at how the length of

33

residential hospice enrollment can affect the quality of dying and death has not yet been

conducted.

1.9.3 Age

Results of some studies indicate that older age may be associated with better quality of

dying and death. Lewis Newby et al (2011) compared family satisfaction with care and quality of

dying and death in the Intensive Care Unit by patient age and found that families of patients from

different age groups provided significantly different assessments of end-of-life experiences.

Families of older patients reported higher levels of overall satisfaction with the ICU care and

higher perceived quality of dying and death. The study also showed older age to be associated

with better scores on the connectedness and death preparation subscales of the QODD

questionnaire indicating that older patients may be better prepared for the dying experience. It is

also likely that patient age is correlated with other important factors which covary with patient

age such as patients‟ attitudes towards dying and acceptance of death even though in this study

transcendence (i.e. the scale of the QODD questionnaire which asks about death related distress)

was not associated with age. However in a study done by Tang et al (2011) investigating death

anxiety of older patients, older age was found to be associated with lower psychological death

related distress.

A study conducted by Cheng et al (2012) to determine factors which affect the

improvement of the quality of dying of terminally ill patients with cancer admitted to a palliative

care unit found results that were partly in agreement with Lewis Newby‟s results. Better quality

of dying and death was seen for patients in the age group 40–65 years compared to those

34

younger and older. In Newby‟s study, patients between the ages 35-65 showed better QODD

than those younger but poorer QODD than those older.

35

Chapter 2: Rationale

Much of the research assessing the quality of dying has focused on hospital care and care

in academic institutions. Research assessing the quality of the dying experience in community

settings is important and necessary as a majority of patients wish to die in the community. With

the recent growth of the number of the residential hospices in Ontario, residential hospices may

present a cost effective compromise between the home and hospital setting for dying patients.

There is however limited research evaluating the quality of dying and death in the residential

hospice setting.

36

Chapter 3: Objectives and Hypotheses

3.1 Objectives

(1) To assess the quality of dying and death of residents who received care in a

residential hospice.

(2) To identify correlates of better quality of dying and death.

3.2 Hypotheses

(1) Caregiver report of receipt of palliative care prior to attending residential hospice will

be associated with better overall QODD.

(2) Poorer QODD will be associated with shorter length of residential hospice stay (a length

of stay of a week or less).

37

Chapter 4: Methods

4.1: Setting

This study took place at the Kensington Hospice which is a residential hospice open to adults over

18 years of age, with a life limiting illness and an estimated prognosis of less than 90 days.

4.2: Study Design

A cross-sectional quantitative study of the quality of dying and death of patients who received

care in a residential hospice as assessed from the perspective of their bereaved primary

caregivers.

4.3: Subjects

Inclusion criteria for subjects are as follows:

Adult (i.e. 18 years of age or older)

English-speaking and reading

Male or female

Primary caregivers of deceased patients who passed away at the Kensington

Hospice To become a resident of the Kensington Hospice the following criteria had to be

met (Kensington Hospice, 2014):

At least 19 years old

Have a life-threatening illness

38

Have symptoms that can be managed by the hospice

Have chosen a residential palliative hospice as their desired care setting

Have a prognosis of less than 3 months to live

Have a Palliative Performance Scale (PPS) of 40 or less (Ambulation: mainly in bed or totally

bed bound, Activity & Evidence of Disease: Unable to do most or any activity, extensive

disease, Self Care: Mainly Assistance or Total Care, Intake: Normally or reduced or minimal

to sips or mouth care only, Conscious Level: Full or Drowsy +/- Confusion, Drowsy or Coma

+/- Confusion)

Are unable to manage in their home

Have a valid health card

4.4 Procedure

Upon residents‟ admission to the Residential Hospice, the Director of Care at the

Kensington Hospice provided primary caregivers with an information sheet explaining

study details.

Approximately 4-6 months after patient death, a letter was sent to the primary caregiver by

the Kensington Hospice informing them of a study being done by the University Health Network in

collaboration with the Kensington Hospice. A caregiver consent form was also included. The letter

explained that caregivers would receive a telephone call in two weeks to further explain the study

and request their participation. The letter included a Kensington Hospice telephone number to call

and leave a message if caregivers did not wish to be contacted about participation in the study. This

is a method of recruitment often used in after-death

39

research with bereaved individuals (Yancey et al., 1990; Ringdal et al., 2001). A Kensington

Hospice e-mail address was also provided for individuals to send an e-mail if they did not wish

to be contacted about the study. The Kensington Hospice staff was provided with a sample

script with a list of frequently asked questions and responses with regards to the study, should

caregivers contact them with questions about the study.

Two weeks after the study letter has been sent, primary caregivers who had not

declined were contacted by telephone by a member of the research staff. At this time, the

primary caregiver was asked if they wished to hear more about the study and the study was

explained to them in further detail with their permission. A maximum of 2 telephone messages

were left for potential subjects before they were considered unreachable. For those bereaved

primary caregivers who agreed to participate, verbal consent was obtained and documented and

an interview was scheduled, at their convenience, to be done either over the telephone or in-

person at the University Health Network.

At the time of the in-person QODD interview, written informed consent was obtained.

Demographics forms (caregiver and patient) and questionnaires (global ratings of quality of

death and quality of moment of death, questionnaire for location and duration of specialized

palliative care received were also administered.

For those caregivers who completed QODD interviews over the phone, a consent form was

mailed with a stamped envelope.

40

Study was introduced by the Director of Hospice Care

Letter was sent to primary caregiver of resident from the Kensington Hospice

Primary caregiver was telephoned at number provided

Upon admission

3 months after

passing away

of resident 2 weeks time is given for

caregiver to call & refuse

Caregiver did not answer

Left Voicemail

Second Telephone call was made

Left Voicemail

Recorded as “Unable to contact”

Caregiver answered

Explained Study

Verbal consent Study refused

given

Interview Recorded as

scheduled “Refused”

Figure 1: Flow Diagram of Study Steps

41

4.5 Measures Administered to Caregivers

4.5.1 Demographics Forms: The demographics information sheet for primary caregivers

included: caregiver age, gender, self-identified ethnicity, self-identified religion, level of

education, marital status, household income, the nature of the patient/primary-caregiver

relationship (spouse/common-law partner, parent, child, sibling, other family, or friend), and

living situation.

The demographics information sheet for patients includes: date of birth (to calculate age at

time of death), gender, date of diagnosis, type of illness, date of referral to the Kensington

Hospice, the number of visits received from the Kensington Hospice prior to admission ,

duration of stay at the Kensington Hospice, and date of death.

4.5.2 Quality of Dying and Death Questionnaire: The QODD questionnaire (Patrick et al.,

2001) is a 31-item questionnaire, administered by interviewer to bereaved proxy respondents,

about the patient‟s last 7 days of life (if unconscious or unresponsive throughout the last 7 days,

the focus is the last month before the patient‟s death). The questionnaire, as described above,

covers 6 domains: symptoms and personal care, treatment preferences, time with family, whole

person concerns, preparation for death, and moment of death. Downey et al (2010) have recently

suggested focusing on four latent variables: Symptom Control (i.e. pain control, control over

what was going on, ability to breathe comfortably); Preparation (i.e. visiting with spiritual

advisor, having funeral arrangements in order, avoiding life support, having health care costs

covered); Connectedness (i.e. sharing physical expressions of affection, spending time with

family and friends) ; Transcendence (i.e. feeling unafraid of dying, feeling at peace with dying,

feeling

42

untroubled about strain on loved ones).Respondents are asked about observable experiences or

activities related to these domains but the score is obtained by asking how they wou ld rate this

aspect of the patient‟s dying experience on a scale of 0 to 10, with 0 being a terrible experience

and 10 being an almost perfect experience. It leads to an overall score from 0 to 100.

4.5.3 Specialized Palliative Care Received: Retrospective information about caregivers‟

perception of location (residential hospice care, palliative care unit, outpatient clinic, and home)

and duration (number of days) of specialized palliative care received prior to death was obtained

via questions adapted from the Toolkit of Instruments to Measure End-Of-Life Care (Teno et al.,

1999). The Toolkit of Instruments to Measure End-Of-Life Care was developed to have user-

friendly data collection instruments to examine care of the dying and then to be able to

undertake interventions to improve and enhance the quality of care.

4.6 Timing of questionnaire

The questionnaire was administered 4-6 months after patient death. This timeframe has been

considered an appropriate timeframe to carry out such studies in order to minimize retrospective

bias but to also allow families time to deal with the initial stages of grief without having too

much time away from the experience (Steinhauser et al., 2000). Tearfulness which may be an

indicator of grief is also shown to decline substantially between one and three months in

widows (McPherson et al., 2004).

4.7 Ethical considerations

43

The study procedure and questionnaire was approved by the University Health Network

Research Ethics Board and also approved by the University of Toronto Ethics Review office

after undergoing administrative review. The Kensington Hospice‟s Director of Care as well as

the members of the Kensington Hospice‟s medical advisory board were also consulted in

choosing the 3-6 months post patient death as a timeframe for contacting bereaved caregivers

for the present study.

The study was briefly introduced to all caregivers upon admission of their loved one to

the Kensington Hospice by the director of hospice care. Most caregivers when contacted by the

research coordinator also indicated that they had received and read the letter from the Kensington

Hospice. Caregivers had an opportunity to ask questions before and after the study was explained

over the telephone. Upon hearing about the study and participants being able to withdraw at any

time, verbal consent was obtained from those caregivers who wished to participate. Written

consent was then obtained in person for those participants who completed in person interviews.

Consent forms were post mailed (with enclosed stamped envelopes) to those participants who

completed interviews over the phone. Primary caregivers who requested psychosocial assistance,

or caregivers whom the research student interviewer identified as being significantly emotionally

distressed, were referred to the Kensington Hospice social worker with caregiver consent.

All questionnaires and data were stored securely and all identifiers removed.

Research data continues to be confidential and only accessible to a limited number of

individuals on the research team.

4.8 Analysis

Descriptive statistics were calculated for caregiver and patient characteristics. T tests,

Pearson correlation coefficients, and analysis of variance (ANOVA) statistics were calculated as

44

a first step to examine associations between all patient and caregiver characteristics and

QODD total and subscale scores. Analysis of covariance (ANCOVA) was used to determine

final correlates of QODD and subscale scores.

In our ANCOVA analysis, we included variables which had been identified as being

statistically significant in our first step of analysis (ANOVA, T-test, Pearson correlation) as well

as variables which had been identified in the literature as being important in contributing to

QODD and sub-scale scores. In our ANCOVA analysis of QODD, we included the variables

receipt of palliative care, length of hospice stay (week or less versus greater than a week),

patient age and caregiver age.

In our ANCOVA analysis of transcendence, we included the variables patient age,

patient gender, receipt of palliative care and duration of residential hospice stay. Gender was

included as a potential predictor in the ANCOVA analysis for transcendence as previous

studies have shown gender to be associated with death related distress (Strobe et al., 2011).

In our ANCOVA analysis of symptom control, we included the variables patient

age, caregiver age, receipt of palliative care, and duration of residential hospice care.

In our ANCOVA analysis of death preparation and connectedness, we included

the variables patient age, receipt of palliative care, and duration of residential hospice care.

All statistical analysis was conducted using SPSS version 19. For the purpose of this study,

short length of stay at the residential hospice was classified as being a week or less. There have

been inconsistencies in how short versus long length of hospice stay has been defined in previous

studies (Waldrop et al., 2006; Christakis., 1994). We chose to define short length of stay as a

week or less in accordance with some previous studies (Cheng et al., 2012). Furthermore, the

developers of the QODD questionnaire have operationalized the last week of life as the “end of

45

life” or “dying experience” and have asked that raters make ratings of a patient‟s dying

experience focusing on the last week of life as much as possible. Investigators also felt that

based on the Kensington hospice professionals‟ experiences, length of stay of a week or less

could be considered a short length of stay and that the distinction of a week or less versus greater

than a week may result in clinically meaningful differences in quality of dying and death.

46

Chapter 5: Results

5.1 Recruitment

The director of hospice care sent letters to ninety one caregivers of patients who died at

the hospice between August 2012 and September 2013. Six caregivers emailed/phoned the

Kensington Hospice informing that they did not wish to be contacted further. The research

coordinator was provided with a total of 85 caregivers to be contacted by phone. We were

unable to make contact with 8 caregivers (eight did not answer phone or respond to voicemail

messages). We made contact with 77 caregivers; five caregivers had a language barrier and

were unable to communicate with the researcher, 13 caregivers refused to participate in the

study (5 caregivers reported they had no time to participate, 2 said they were declining because

of emotional reasons, 4 caregivers said they were not interested, 2 caregivers did not provide a

reason). Fifty-nine caregivers consented to doing an interview. Fifty three interviews were

completed, four caregivers were lost to follow-up (ie provided consent to doing interview but

were then unable to be contacted) and two consented but asked to be contacted at a later date.

Two caregivers did not return consent forms. Fifty one interviews were used for data analysis

purposes.

47

91 Letters were sent to primary caregivers

85 Primary caregivers

were telephoned at

number provided

8 Caregivers did not answer 77 Caregivers answered

59 caregivers gave verbal

5 caregivers had a 13 caregivers

consent Language Barrier refused study

4 caregivers

2 caregivers

53 interviews

were were lost to asked to be

completed follow up contacted

later

Figure 2: Flow Diagram of Study Participation

48

5.2 Deceased Patient and Caregiver Sample Characteristics Table 2: Sample characteristics of Kensington hospice patients

Total Sample (n=51)

Patient Characteristic n Average %

Diagnosis

Cancer 42 82.4

Other (i.e.: kidney failure, 9 17.6

neurological degeneration,

stroke, COPD,

Creutzfeldt-Jakob disease)

Diagnosis pool

GI 10 19.6

Lung 4 7.8

Gyne 4 7.8

Breast 3 5.9

GU 6 11.8

Other 15 29.4

Patient age at death (years)

MEAN (range) 65.42 (34-98)

Patient gender

Female 25 49

Male 26 51

Location prior to hospice

Home 33 64.7

Hospital 16 31.4

Other 2 3.9

Receipt of palliative care

prior to residential hospice

Yes 35 68.6

No 16 31.4

49

Length of stay at

residential hospice

0-7 days 15 29.4

>8 days 36 70.6

Length of stay at

residential hospice

0-29 days 35 68.6

>30 days 16 31.4

Length of stay at

residential hospice (days)

Mean 26.3+32.13

Median 18

(continuous variable)

Table 3. Demographic characteristics of caregivers

Caregiver n Average %

Characteristic

Caregiver age

(years)

Mean (Range) 55.49 + 12.26 (25-81)

Caregiver gender

Female 18 70.6

Male 12 29.4

Caregiver country

of birth

Canada 39 76.5

Other (i.e. Jamaica, 12 23.5

Croatia, China,

Vietnam,

Netherlands,

Bulgaria,

Philippines,

Portugal, Mexico,

England)

50

Caregiver have a

religious

affiliation/belief

Yes 29 56.9

None 22 43.1

Caregiver primary

language

English 48 94.1

Other 3 5.9

Caregiver education

< High School 13 25.5

> High School 38 74.5

Caregiver yearly

income in dollars

< $60000 16 31.4

$60000-$99999 13 25.5

$100000+ 20 39.2

Refused 2 3.9

Caregiver Living

Situation

Apartment 10 19.6

Condo 9 17.6

House 31 60.8

Other 1 2.0

Caregiver

Employment

Employed 37 72.5

Unemployed 14 27.5

(Including retired)

Caregiver take leave

in patient‟s last year

of life

Yes 22 50

No 22 50

51

Caregiver chronic

illness

Yes 31 60.8

No 20 39.2

Relationship to

patient

Spouse/common- 21 41.2

law

Children 17 33.3

Parent 1 2.0

Sibling 1 7.8

Other family 1 2.0

Friends 7 13.7

Length of

relationship to

patient in years 37.04 + 18.49

MEAN (range) (5-70)

Hours spent with

patient per day in

last month of life 11.86+ 8.56

MEAN (range) (0.5-24)

Hours spent

caregiving per day

in last month of life 5.42+ 6.40

MEAN (range) (0-24)

Others to help care

for the patient

Unpaid 8 15.7

Paid 14 27.5

Both 29 56.9

Others to help care

for patient

St Elizabeth/CCAC 35 81.4

Private 3 7.0

Both 5 11.6

52

51% of patients were male. A majority had a terminal cancer diagnosis (82.4%). The

mean age of patients was 65.42 with the youngest patient being 34 and the oldest patient being

98. Average length of stay was 26.3+ 32.13days. 68.6% of patients were reported as having

received palliative care by their primary caregivers. A majority of patients had a length of stay

of greater than a week (70.6%), average length of stay at the hospice was 26.33+32.13. A

majority of caregivers had been living at home prior to coming into the hospice (64.7%)

A majority of primary caregivers who participated in the study were female (70.6%).

Mean age of caregivers was 55.49 + 12.26. Most caregiver were born in Canada (76.5%),

considered their primary language to be English (94.1%) and had a religious affiliation (56.9%).

In the patient‟s last year of life, a majority of caregivers were employed and 50% of caregivers

took time off from work to care for the patient. Most caregivers also suffered from a chronic

illness (60.8%) during the patient‟s last year of life, such as osteoarthritis, depression, anxiety,

and fibromyalgia.

A majority of caregivers had been employed in the patient‟s last year of life. Overall

household income of the primary caregiver in the patient‟s last year of life was varied with

31.4% of caregivers reporting an income of less than $60 000, 25.5% of caregivers reporting an

income of $60000-$99999 and 39.2% of caregivers reporting an income of greater than 100000.

3.9% of caregivers refused to report total household income.

Average length of relationship between patient and primary caregiver was 37.04+18.49. A

majority of patients (had both unpaid and paid help in addition to support from the primary

caregiver.

See tables 2,3 for a full list of deceased patient and caregiver characteristics of study sample.

53

5.3 Sample characteristics of patients & caregivers and their relationship to

total quality of dying and death and sub-scale scores

Table 4. Sample characteristics of patients and their relationship (using T-tests, ANOVA and

Pearson correlation coefficients) to total quality of dying and death and sub-scale scores (p

values of relationship, * indicates p <0.05)

Total Sample (n=51)

Overall Transcendence Symptom Death Connectedness

QODD Control Preparation

P value P value P value P value P value

Diagnosis (T-test) 0.728 0.191 0.790 0.587 0.870

Cancer

Other

Diagnosis pool (ANOVA) 0.213 0.291 0.153 0.228 0.550

GI

Lung

Gyne

Breast

GU

Other

Patient age at death (years) 0.43 0.03* 0.84 0.51 0.41

MEAN

(Pearson correlation

coefficient)

Patient gender (t-test) 0.540 0.792 0.932 0.913 0.914

Female

Male

Location Prior to Hospice 0.387 0.764 0.581 0.259 0.417

(ANOVA)

Home

Hospital

Other

54

Receipt of palliative care 0.235 0.646 0.314 0.111 0.011*

prior to residential hospice

(t-test)

Yes

No

Length of stay at 0.002* 0.021* 0.022* 0.072 0.048*

residential hospice (t-test)

0-7 days

>8 days

Length of stay at 0.431 0.724 0.684 0.200 0.401

residential hospice (t-test)

0-29 days

>30 days

Length of stay at 0.52 0.26 0.96 0.60 0.44

residential hospice

(continuous variable,

Pearson correlation

coefficient)

Table 5: Sample characteristics of caregivers and their relationship (using T-tests, ANOVA and

Pearson correlation coefficients) to total quality of dying and death and sub-scale scores (p

values of relationship, * indicates p <0.05)

Overall Transcende Symptom Death Connected

QODD nce Control Preparation ness

(P value) (P value) (P value) (P value) (P value)

Caregiver age (years) 0.04* 0.08 0.004* 0.42 0.39

MEAN

(Pearson Correlation

Coefficient)

Caregiver gender (t-test) 0.830 0.679 0.618 0.873 0.843

Female

Male

Caregiver country of birth (t-test) 0.262 0.815 0.365 0.226 0.924

Canada

Other

55

Caregiver Religion 0.127 0.055 0.389 0.921 0.271

(t-test)

Yes

No

Caregiver primary language 0.269 0.710 0.258 0.941 0.662

(t-test)

English

Other

Caregiver education 0.391 0.093 0.634 0.357 0.788

(t-test)

< High School

> High School

Caregiver yearly income in dollars 0.699 0.297 0.594 0.569 0.873

(ANOVA)

< $60000

$60000-$99999

$100000+

Refused

Caregiver Employment 0.165 0.067 0.187 0.524 0.426

(t-test)

Employed

Unemployed (Including retired)

Caregiver take leave (t-test) 0.528 0.905 0.365 0.869 0.365

Yes

No

Caregiver chronic illness 0.759 0.782 0.854 0.790 0.273

(t-test)

Yes

No

Relationship to patient 0.846 0.745 0.241 0.896 0.767

(ANOVA)

Spouse/common-law

Other family

Friends

Length of relationship to patient in 0.44 0.13 0.23 0.84 0.50

years

(Pearson Correlation Coefficient)

56

Time spent with patient per day in 0.49 0.94 0.63 0.68 0.95

last month of life

(Pearson Correlation Coefficient)

Time spent caregiving per day in 0.88 0.61 0.64 0.60 0.73

last month of life

(Pearson Correlation Coefficient)

Others to help care for the patient 0.672 0.556 0.581 0.944 0.376

(ANOVA)

Unpaid

Paid

Both

T-tests, ANOVA, and Pearson correlation coefficient statistics were calculated for

categorical and continuous variables (see tables 4,5). Results showed significant associations

in quality of dying and death for the variables length of residential hospice stay and caregiver

age. Patients with a length of stay of greater than a week showed better quality of dying and

death compared to those with a length of stay of a week or less, there was no difference in

quality of dying and death scores between those who had a length of stay of less than a month

and those with a stay of a month or greater. Caregivers of older age reported better quality of

dying and death for their loved ones.

For the variables patient age and length of residential hospice stay (week or less versus

greater than a week) significant differences were seen in transcendence scores. Older patient age

and a length of stay of greater than a week were associated with higher transcendence scores.

Results showed significant differences in symptom control based on caregiver age with older

caregivers reporting better symptom control as well as based on length of hospice stay with those

patients with a stay of greater than a week showing better symptom control. Results showed

57

significant differences in connectedness scores based on receipt of palliative care and length of

residential hospice care (a week or less versus greater than a week). Those patients who were

reported to have received palliative care prior to coming to hospice had lower connectedness

scores. Those patients with a length of residential hospice stay of greater than a week had

better connectedness scores. No significant differences in variables were identified for death

preparation.

In our univariate analysis of covariance (ANCOVA), we included variables that have

been identified in the literature as predictors of QODD and the sub-scales as well as variables

that were identified as being significant in the first step of our analysis (t-tests, ANOVA, Pearson

Correlation coefficient).

5.4 Overall QODD

The mean overall QODD score was 69.97 (SD ) with 47.1% of the sample scoring in the

“good” to “perfect” range of the scale and 52.9% of the sample scoring in the “neither good

nor bad” range of the scale.

Our univariate analysis of covariance included variables that have been identified in

the literature as predictors of overall QODD scores and variables which showed significant

differences in quality of dying and death in our initial analysis (t-test, ANOVA, Pearson

correlation) including patient age, caregiver age, receipt of palliative care, and length of hospice

stay of greater than a week. ANCOVA analysis identified length of residential

58

hospice stay of greater than a week as a significant correlate of overall QODD in our study.

Patients with a length of stay of greater than a week had better overall QODD scores. Overall

QODD did not vary with patients‟ receipt of palliative care. There was also no significant

interaction between receipt of palliative care and length of residential hospice stay.

Table 6: ANCOVA Univariate analysis of related variables for overall QODD

Independent Variable Type III Df Mean F Sig

Sum of Square

Squares

Patient Age 12.693 1 12.693 0.086 0.119

Caregiver Age 372.450 1 372.450 2.523 0.771

Receipt of Palliative 10.589 1 10.589 .072 0.790

Care

Length of Residential

Hospice Stay 1183.712 1 1183.712 0.018 0.007

Length of Residential

Hospice Stay *Receipt 93.382 1 93.382 0.633 0.431

of Palliative Care

59

5.4.1 Sub-scale: Transcendence

The mean transcendence score was 60.27 (SD 27.68) with 16% of patients scoring in the

“terrible to poor range”, 44% of patients scoring in the “good to perfect” range of the scale and

40% of patients scoring in the “neither good nor bad” range of the scale.

Our univariate analysis of covariance included the variables patient gender, patient age,

receipt of palliative care, and length of residential hospice stay of greater than a week which had

been identified as predictors of higher transcendence. ANCOVA results identified patient age

and length of residential hospice care were significantly associated with transcendence. Older

patient age and length of residential hospice stay of greater than a week were associated with

higher transcendence scores.

Table 7: ANCOVA Univariate analysis of related variables for transcendence

Independent Type III Sum of Df Mean Square F Sig

Variable Squares

Patient Age 4318.845 1 4318.845 6.862 0.012

Patient 4.617 1 4.617 .007 .932

Gender

Receipt of

Palliative 1724.063 1 1724.063 2.739 0.106

Care

Duration of

Residential 5125.203 1 5125.203 8.143 0.007

Hospice

Care

Duration of

residential

hospice care 664.919 1 664.919 1.056 .310

*Receipt of

Palliative

Care

60

5.4.2 Sub-scale: Symptom Control

The mean symptom control score was 67.65 (SD 21.07) with 2% of patients scoring in the

“terrible to poor range”, 54.9% of patients scoring in the “good” to “perfect” range of the

scale and 43.1% of patients scoring in the “neither good nor bad” range of the scale.

Our univariate analysis of covariance included the variables patient gender, patient age,

caregiver age, length of residential hospice stay of greater than a week and receipt of palliative care

which may be predictors of better symptom control according to previous studies and our initial

univariate analysis. Our ANCOVA results identified caregiver age as significantly associated with

symptom control with caregivers of older age reporting better symptom control.

Table 8: ANCOVA univariate analysis of symptom control and related variables

Independent Variable Type III Df Mean Square F Sig

Sum of

Squares

Patient Age 545.894 1 545.894 1.488 0.229

Caregiver Age 3418.905 1 3418.905 9.321 0.004

Receipt of Palliative Care 756.530 1 756.530 2.063 0.158

Length of Residential

Hospice Stay 363.867 1 363.867 0.992 0.325

Duration of residential

hospice care *Receipt of 130.151 1 130.151 0.355 0.554

Palliative Care

61

5.4.3 Sub-scale: Death Preparation

The mean total death preparation score was 68.72 (SD 14.65) with 2% of patients scoring

in the “terrible to poor range”, 54.9% of patients scoring in the “good” to “perfect” range of the

scale and 43.1% of patients scoring in the “neither good nor bad” range of the scale.

Our univariate analysis of covariance included the variables patient age, receipt of palliative

care, and length of residential hospice stay of greater than a week which may be predictors of better

death preparation according to our initial analysis as well as previous studies (Hales et al, 2014).

ANCOVA results identified length of residential hospice stay of greater than a week and the

interaction between receipt of palliative care and length of residential hospice stay as significantly

associated with better death preparation (see figure 2). Patients who had received palliative care

prior to residential hospice and were in hospice for greater than a week had poorer death preparation

scores than those who were in residential hospice for a week or less. Patients who had not received

palliative care and were in hospice for greater than a week had better death preparation scores than

those who were in residential hospice for a week or less

62

Table 9: ANCOVA univariate analysis of sub-scale death preparation and related variables

Independent Variable Type III Df Mean Square F Sig

Sum of

Squares

Patient Age

26.283 1 26.283 0.137 0.713

Receipt of Palliative Care

4.672 1 4.672 0.024 0.877

Length of Residential

Hospice Stay

1333.175 1 1333.175 6.968 0.011

Length of Residential

Hospice Stay *Receipt of

Palliative Care 964.327

1 964.327

5.040 0.030

63

Length of Stay

Figure 3: Interaction between length of stay at residential hospice and receipt of palliative care for sub-scale death preparation

64

5.4.4 Sub-scale: Connectedness:

The mean connectedness score was 83.24 (SD 13.03) with 7.8% of the sample scoring in

the “good to perfect” range of the scale and 92.2% of the sample scoring in the “neither good

nor bad” range of the scale.

The variables patient age, receipt of palliative care, and length of residential hospice stay of

greater than a week were included in our ANCOVA univariate analysis. We also looked at the

interaction between length of residential hospice stay and receipt of palliative care in effecting

connectedness scores as both palliative care and residential hospice care aim to provide holistic

end-of-life care that meets the needs of both patients and families. ANCOVA identified receipt

of palliative care as significantly associated with better connectedness scores.

65

Table 10: ANCOVA univariate analysis of overall correlates of sub-scale connectedness

Independent Variable Type III Df Mean Square F Sig

Sum of

Squares

Patient Age

188.874 1 188.874 1.601 0.212

Receipt of Palliative Care

667.394 1 667.394 5.658 0.022

Length of Residential

Hospice Stay 295.335

1 295.335

2.504 0.121

Length of Residential

Hospice Stay *Receipt of 31.191

1 31.191

0.264 0.610

Palliative Care

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Chapter 6: Discussion

6.1 Overall Results

Our retrospective study of the quality of dying and death of terminally ill residential

hospice patients found the majority of ratings to be highly favourable, with 47.1% of patient

deaths rated in the good to perfect range. This is the first study to evaluate the quality of dying

and death in a residential hospice in Canada. Reasons for the overall positive results may include

around the clock availability of staff, including physicians, nurses, and a social worker to

provide medical care as well as address psychosocial concerns. Furthermore, caregivers reported

a majority of patients (68.6%) had received some palliative care prior to being admitted to the

residential hospice which may also contributed to the overall favourable results. All patients in

the study sample also had some means of social support. All patients had a primary caregiver

(family or friend) and a majority of the study sample had other family and friends who helped

care for the patient as well. Most patients also received care from OHIP covered agencies such

as Community Care Access Centres and St. Elizabeth. Some caregivers may also have rated

QODD positively due to their own feelings of gratitude and appreciation for the caregiving

services provided by the hospice.

A study conducted by Hales et al (2014) also in Toronto, Canada evaluating the quality of

dying and death in the home, inpatient palliative care setting, and acute care hospital setting

found the most favourable quality of dying and death ratings for home deaths. However many

studies indicate that while both patients and their caregivers would prefer for patients to die at

home, this is often not possible leading both patients and caregivers to feel distressed especially

when unexpected transfers to hospital occur at the end of life (Ishikawa et al., 2013). Acute care

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hospital units including the emergency department are often not the most suitable place for dying

patients (Leak et al., 2013). The finding that the quality of dying and death of patients dying in a

residential hospice are positively rated (average QODD in the home was rated by caregivers as

68.8, average QODD in the residential hospice setting was rated by caregivers as 69.9) is an

important indicator that a good death is possible outside a patient‟s home and may help in

informing caregivers and patients in making future decisions on preferred location of death.

The majority of caregivers interviewed were female which is in accord with recruitment

patterns of other studies conducted with family caregivers. Females are more likely than males to

be primary caregivers and are also more likely to participate in research studies (The National

Alliance for Caregiving and AARP., 2009). Our results indicate that a disproportionate burden of

caregiving falls on women. 51% of patients were male. The close to equal proportions of male

and female is likely because the Kensington Hospice is a 10 bed residential hospice which is split

into 5 female rooms and 5 male rooms to accommodate males and females equally. The diversity

of socioeconomic status as reflected in total primary caregiver income indicates that we were

able to capture an economically diverse sample and that the Kensington Hospice serves an

economically diverse population.

A majority of patients were reported as having received palliative care by their caregivers.

This is likely due to the universal availability of palliative care services in the Toronto area. Referrals

to residential hospice are often made by palliative care professionals, which may also help explain

why a large percentage of patients who die in residential hospice may have received palliative care

prior to being admitted to residential hospice. Furthermore, those patients who receive palliative care

may have more severe symptoms and suffer from more complex disease making it difficult for

symptoms to be controlled in the home at the end of life compared to those

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patients who do not receive palliative care. Terminally ill patients who receive palliative care

and understand the palliative philosophy may also be more accepting of passing away in a

residential hospice. Our results also indicate that a majority of patients were residing at home

prior to coming into the hospice. This is likely due to the hospice giving preferential admission

to those patients who are most in need of care.

6.1.1 Factors Contributing to QODD

Our study has yielded factors that contribute to a good death of terminally ill patients who

die in a residential hospice based on evaluations by bereaved caregivers. After controlling for

potentially confounding factors, better overall quality of dying and death was reported for

those patients who had a length of residential hospice stay of greater than a week compared to

those with a length of stay of a week or less.

Clinicians and other hospice professionals may need time to evaluate patients‟ physical

and psychological symptoms and to get symptoms under control. A length of stay of greater than

a week may give patients adequate time to benefit from the services that a residential hospice has

to offer. Patients admitted in the last days of life may be too tired or not even be responsive to

benefit from the services of the hospice. In addition to medical care the hospice offers services

such as aroma therapy and music therapy for patients. For those patients interested in seeing a

religious or spiritual advisor, the hospice staff arrange for spiritual care providers to come in to

the hospice to see the patient. Those patients who are admitted in the last days of life may not be

able to enjoy these additional services.

Alternatively, admission to the hospice in the last few days of life may indicate a crisis

situation at the end of life or that physical and psychological symptoms were not adequately

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managed in the previous location of care. Late hospice admission may also indicate that the

patient did not want to die at the hospice but had to be admitted due to difficult circumstances

such as the primary caregiver no longer being able to care for the patient at home. Hospice

staff may also have difficulty treating patients‟ physical and psychological symptoms in a

limited period of time with limited familiarity of the patient.

A length of stay of greater than a week may also be required to provide patient

centered residential hospice care at the end of life that considers individual physical,

psychosocial, and spiritual needs of terminally ill patients and their families. Further research

should focus on how residential hospices can improve quality of dying and death for patients,

despite short duration of stay. Results are also an indication to palliative care physicians and

community care access center workers who usually refer patients to residential hospice to make

referrals and begin discussions surrounding location of death early in the patients‟ disease

trajectory. Referrals to hospice in the last few days of life may also impede death preparation and

acceptance, therefore leading to poorer quality of dying and death scores. Our results indicate the

need for early advance care planning by patients and the need for physicians to encourage

advance care planning by their patients. Earlier end-of-life care discussions between physicians

and patients would give patients and families time to consider where they would like to die and

would allow for earlier transition from curative to residential hospice care thus permitting

patients longer stay in residential hospice.

There are various reasons for late referral to palliative care. In one study, family members

believed that physician communication and/or difficulty with prognostication were the reasons for a

late hospice referral (Teno et al., 2012). Research indicates that physicians tend to overestimate

survival, and communication with the patient and family regarding prognosis is

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often lacking. Late referrals to residential hospice may occur due to similar reasons. Patients

wanting to stay home for as long as possible may also factor into their decisions of choosing to

go to a residential hospice. Caregivers and patients themselves may have a difficult time

deciding to go into a residential hospice due to being unsure of the disease process, lack of

knowledge about what residential hospices offer, lack of support, cultural barriers and stigma,

and lack of access to palliative care. For those patients with non-cancer diagnosis and who may

often have more unpredictable disease trajectories compared to cancer patients may face the

problem of healthcare professionals viewing palliative care as a service introduced at end of life

and not a philosophy of care for a person who needs services throughout an ultimately terminal

illness trajectory (Hupcey et al., 2009). Nonetheless, results of this study found no difference in

length of residential hospice care based on diagnosis.

Interestingly, there was no difference in quality of dying and death between those patients

who had a length of hospice stay of less than a month and those with a stay of a month or greater

indicating that longer length of residential hospice may not necessarily mean better quality of

dying and death. However, our results suggest that a length of stay of greater than a week may

be necessary for patients to benefit from the comprehensive care that a hospice offers.

Patient and caregiver characteristics such as socio-economic status, age, religion were

not shown to affect overall quality of dying and death. These factors were also not associated

with receipt of palliative care and longer length of residential hospice stay. Contrary to our

hypothesis there was no significant difference in ratings of QODD between those patients who

were reported to have received palliative care by their caregivers and those patients who were

not reported to have received palliative care. This finding indicates that for patients who die in

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hospice, the care provided at the hospice may be more important than prior palliative care

received in impacting quality of dying and death.

6.1.2 Sub Scale: Transcendence

A significant minority of patients (16%) were identified as having experienced death

related distress at the end of life as measured by the transcendence subscale which asks about

fear of dying, peace with dying, and worry about strain on loved ones. This finding is

concerning as it suggests that some patients suffer from significant death related psychological

distress at the end of life. Greater attention by the hospice staff may also be needed to manage

the psychological symptoms that patients experience at the end of life. Interestingly in a study

conducted by Hales at al (2014) evaluating the quality of dying and death of cancer patients who

also passed away in Toronto Canada, 18.5% of patients rated in the poor to terrible range on the

QODD transcendence subscale suggesting that psychological distress related to dying may be a

problem across different institutions of care. This finding may reflect a larger societal

unacceptance and fear of death and a problem which may need to be addressed at a societal and

cultural level.

Our univariate analysis of covariance which included factors that have been identified

in the literature as being associated with death related psychological distress including age,

receipt of palliative care, and length of residential hospice stay of greater than a week found

older age and length of residential hospice stay of greater than a week to be associated with

lower death related distress (Tang et al., 2011; Abdel-Khalek., 2005). Older age was shown to be

associated with lower death related psychological distress as identified by the transcendence sub-

scale. This finding is similar to findings in other studies looking at death anxiety of cancer

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patients which have shown that cancer patients‟ emotional reactions vary with age with the death

anxiety of older cancer patients being lower than that of middle-aged or young cancer patients.

Young patients seem to experience greater emotional torment with relation to dying than elderly

patients (Tang et al., 2011). In our study caregiver‟s reporting of patients‟ receipt of palliative

care was not significantly associated with lower death related distress. However, those patients

who were reported to have received palliative care showed lower death related distress.

Empirical studies have shown that fostering patients' perception of meaning in their life and

improving mood is an essential task for palliative care clinicians. A study conducted by Miller et

al (2005) found that terminally ill patients who received a palliative group intervention entitled

“Life-Threatening Illness Supportive-Affective Group Experience” had significantly lower

depression symptoms, death-related feelings of meaninglessness and significantly better

spiritual well-being compared to control patients. Palliative interventions may help in reducing

death related distress at the end of life.

Chibnall et al (2002) reported that the most important variables for predicting death distress

in terminally ill patients were physical symptom severity, depression as well as patient perceptions

of communication with their physicians around psychosocial spiritual needs and decision making.

Palliative care aims to address these factors which may help explain the association between

perceived receipt of palliative care and lower death distress. Furthermore, those patients who choose

to receive palliative care may be those patients who are more accepting of death and are less likely

to experience death related distress at the end of life with patients with a length of residential

hospice stay of greater than a week showing higher transcendence scores. Patients with longer length

of stay showed lower death related distress. An important goal of residential hospice care is to

address the psychosocial concerns of patients, it

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may however require healthcare professionals time to get to know the patient, build rapport and

establish trust which may indicate why those with a longer length of stay had lower death

related distress. Those patients who are admitted in the last days of live may also have difficulty

cognitively or psychologically expressing what is most distressing to them and may have

difficulty addressing their fears surrounding end of life in a limited amount of time. Nonetheless

as a significant of minority patients did rate on the poor to terrible range for transcendence,

residential hospice health care professionals may benefit from training on how to address death

related distress at the end of life even when they only have a short period of time with the

patients. In reality this may be difficult to accomplish as people‟s worry and anxiety over the

dying process may be moulded by society and our death fearing culture, these anxieties and

beliefs may not be susceptible to change in a short amount of time.

Gender differences in death anxiety have been found in previous studies. In a study

assessing death anxiety in older adults, women showed greater fear for the death of loved ones

and for the consequences of their own death on these loved ones than did men (Missler et al,

2012). Russac et al (2007) also found female gender to be associated with higher death anxiety

in adults. In our study gender was not found to be significantly associated with death related

distress.

6.1.3 Sub-scale: Symptom Control

Our current study results indicate that physical symptoms were well controlled in the

residential hospice setting at the end-of-life with a majority of patients (54.9%) scoring in the

good to perfect range and only 1 patient in the poor to terrible range. Residential hospices

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consider the management of physical symptoms to be an important goal of hospice care

which may help explain the positive ratings.

In a study conducted to determine predictors of symptom severity in patients with

metastic cancer, female gender was shown to be associated with greater symptom severity

(Zimmermann et al., 2010). We found only older caregiver age to be associated with better

symptom control. This may be due to older caregivers being more realistic about management of

symptoms and having fewer expectations of healthcare professionals in managing symptoms. As

results of symptom control were favourable for a majority of patients, death in a residential

hospice in comparison to other institutions of care (ie: acute care hospital, PCU) may in itself be

a significant predictor of better symptom management.

Hales et al (2014) found in a study evaluating quality of dying and death in the home,

PCU, and acute care hospital setting that patients who died at home had significantly lower

physical symptoms. Patients who are able die at home may have less severe disease and may

not require as much symptom management. However, patients who die in residential hospice

are likely to have symptoms similar to those who die in hospital as one of the main reasons for

hospice admission is to have around the clock medical care. Residential hospices preferentially

admit patients who can no longer be cared for in their homes. Therefore, the overall positive

results for symptom control is an indication that physical symptoms are likely well managed in

the residential hospice setting rather than patients having a lack of physical symptoms to begin

with when admitted to hospice.

The goal of palliative care is to relieve suffering including physical symptom burden

and promote quality of life (QOL) for patients and families (Irwin et al, 2012). Therefore, it is

surprising that while not statistically significant there was a trend towards those patients who

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received no palliative care showing better symptom control. A likely explanation however is

that those patients with the most severe physical symptoms are more likely to be referred to and

receive palliative care, therefore even with palliative care they may suffer from more physical

symptoms which are greater in severity compared to those who don‟t receive palliative care. As

expected, those patients with a longer length of residential hospice stay showed less symptom

burden as residential hospice professionals may be able to better manage physical symptoms

with greater length of stay.

6.1.4 Sub-scale: Death Preparation

The QODD death preparation sub-scale asks about practical aspects of death preparation

including questions about funeral arrangements, patients having an opportunity to discuss end-of-life

wishes with their physician, and patients having health care costs covered. Factors that may have

contributed to the overall positive results of the death preparation sub-scale include a large

percentage of patients receiving palliative care prior to coming to the hospice. As patients usually

choose to be admitted to a residential hospice unlike death in a hospital which may occur

unexpectedly, patients and caregivers may be better prepared for the dying process at a residential

hospice. Furthermore, before referring patients to a residential hospice health care practitioners are

likely to have conversations with their patients about their wishes for end-of-life care and about

patients‟ expectations. These conversations may be a vital part of death preparation and is captured

in the questions included in the death preparation sub-scale. Furthermore, to be admitted to a

residential hospice all patients must have agreed to a “do not resuscitate” order which is a decision

that usually triggers discussion surrounding the end-of-life process. The death preparation subscale

also includes questions about visiting with a spiritual

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advisor if necessary and having healthcare costs covered. Quality scores for both these questions

would be expected to be favourable as most residential hospices have spiritual advisors affiliated

with their organization, additionally if a staff spiritual care person is not available usually

hospice staff arrange for outside spiritual care providers to visit with patients. With regards to

health care costs hospice patients are not charged for their care at the hospice, therefore patients

and families do not endure any costs as a result of being at the hospice.

Length of residential hospice of greater than a week was associated with better death

preparation scores. Residents with a stay of greater than a week may be better prepared for death

due to having adequate time to ask hospice staff questions surrounding the dying process. People

who are at the residential hospice for a longer period of time may also have more time to deal

with practical matters surrounding the dying process such as having conversations surrounding

end-of-life care with their doctor and making funeral arrangements. Interestingly, a significant

interaction was identified between length of residential hospice stay of greater than a week and

receipt of palliative care. Those patients who had received palliative care and had a longer length

of stay showed lower death preparation than those who had not received palliative care but had a

longer length of stay. This may be due to patients who had received palliative care having made

preparations for funeral arrangement and having spoken about their end-of-life wishes with their

palliative care physicians prior to receiving hospice care. However with greater length of time

passing by at the hospice, patients and caregivers may have become confused as to when death

may occur and may have had to re-evaluate initial plans which had been made. An extended

length of stay in a constant state of anticipation of death may also be demoralizing and

emotionally taxing leading patients to feel less prepared for death (Christakis, 1994).

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6.1.5 Sub-scale: Connectedness

The highly favourable results for the connectedness subscale (i.e. sharing physical

expressions of affection, spending time with family and friends) is likely due to the flexible

open door policy of residential hospices which allow for families and friends to visit anytime

(twenty four hours a day, seven days a week). Furthermore, all patients had a primary caregiver

(family or friend) and most had other family or friends who helped with care as well. In fact, the

average amount of time spent by the caregiver with the patient per day in the patient‟s last

month of life was 11.86 hours. The positive results may therefore have also been due to the

availability of social support for these patients. In fact, patients who die in residential hospice

may be better socially supported than individuals who die in other settings of care.

Caregivers who made ratings of QODD may also have been hesitant to rate aspects

related to connectedness unfavourably as questions in this sub-scale pertain to patients‟

experiences with family and friends. Ratings of connectedness did not however differ based on

relationship of caregiver to the patient even though some previous studies have indicated that

spousal caregivers may rate QODD and some aspects of QODD more favourably than other

caregivers (Braun et al., 2014).

Receipt of prior palliative care was associated with better scores on the connectedness

sub-scale. Due to the comprehensive nature of palliative care, caregivers may receive palliative care

themselves (Hales et al., 2012). As palliative care emphasizes not just the care of patients but

families as well, the loved ones of caregivers who received palliative care may know the

importance of social support for the patient and may have taken the effort to spend more time with

the patient at the end of life. Patients who received palliative care may also understand the

importance of social support at the end of life and may be more comfortable with loved ones

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visiting them at the end of life compared to those patients who did not receive palliative care.

Caregivers of patients who received palliative care may have felt well supported themselves

which may also have translated into positive ratings of the connectedness sub-scale. Though the

association was not significant, there was a trend towards those patients who had a length of stay

of greater than a week at the hospice having better connectedness scores. Friends and family of

patients who have a greater length of stay at the hospice may have more time to spend with the

patient and to be emotionally present for the patient as most caregiving related duties (i.e.:

medical care, meals, cleaning) would be taken care of by the hospice staff. The family and

friends of those patients who have a longer length of stay may have more time to better

understand the terminality of the patient‟s condition and therefore may also spend more time

with the patient at the end of life.

6.2 Clinical Implications

Clinicians‟ decisions in suggesting locations and institutions for end-of-life care may be

influenced by hearing the results of the present study. While home palliative care is often viewed

by many as an optimal approach to end-of-life care; this option is not feasible for many

terminally ill Canadians especially for those patients who experience severe symptoms which

cannot be managed at home at the end of life. A majority of terminally ill patients continue to die

in acute care hospital settings even though most patients report that they wish to die at home.

Services provided in acute care hospital settings are often unnecessary for dying patients.

Furthermore, many acute care hospital settings are lacking in the necessary services such as

dedicated palliative care staff to provide appropriate comprehensive end-of-life care for patients.

Clinicians may be able to present results of this study to comfort patients and families that a

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good death is possible outside of the home setting. Residential hospices may present an

alternative to those patients who are unable to die at home but also do not require the

services offered in the acute care hospital setting.

Furthermore, our finding that length of hospice stay has a significant effect on the quality

of dying and death indicates the importance of early referral to residential hospices by clinicians

and palliative professionals for those patients who are unable to die at home. However, sudden

decline of certain patients and difficulties in prognosticating may make early referrals difficult.

Nonetheless, our results indicate that having conversations surrounding location of death early

on in the disease trajectory may be necessary to have a better quality dying experience at a

residential hospice.

Results of the study indicate that physical symptoms are well managed by clinicians at

the end of life in this setting. However, results of the study indicate that 16% of deaths were

rated in the terrible-poor range (<30) on the Transcendence subscale indicating the need for

interventions to alleviate the distress about death and dying that was identified in a substantial

minority of dying patients. Furthermore, results indicate that in improving end-of-life care

greater focus should be placed on addressing the psychological symptoms patients experience at

the end of life. An important aspect of managing life-threatening illness by clinicians should

include addressing patients‟ existential concerns and preparing patients psychologically for

death in addition to advance care planning and symptom control.

6.3 Limitations

The generalizability of the results of this study may be limited due to sampling constraints,

sample size, and use of a proxy reported measure. Furthermore comparison of overall QODD of

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patients in this sample to decedents who died in other locations of care is limited in that patients

in this sample were not randomly assigned to residential hospice at the end of life. There may

be unique characteristics of this population that we did not measure such as greater death

acceptance of patients, earlier death awareness, or simpler end of life course which may have

helped contribute to the overall positive results.

6.3.1 Generalizability due to Sampling Constraints

As the questionnaire can only be administered to participants who speak English, we

were unable to recruit non English speaking populations. A small minority (6.49%) of

caregivers contacted were recorded as having a language barrier. Results may not apply to

non-English speaking populations.

Generalizability of the findings is limited as we recruited from only one residential

hospice. All patients in this study were caregivers of residents who passed away at the

Kensington Hospice in Toronto, Canada.

All community residential hospices in Ontario including the Kensington Hospice do

however follow the “Community Residential Hospice Standards” as was outlined by Hospice

Palliative Care Ontario in 2012. The standards outline required expectations of all residential

hospices in areas of clinical care, governance, quality assurance, and operations. They were

developed and revised based on evidence from the literature, governing legislation and

regulation and national models of care including the Canadian Hospice Palliative Care

Association‟s Norms of Practice (Community Residential Hospice Standards, 2012). Therefore,

results of this study may be generalizable to other residential hospices in Ontario and Canada as all

residential hospices function and provide care under similar guidelines. Nonetheless while all

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residential hospices in Ontario are operated under guidelines set by Hospice Palliative Care

Ontario, differences in the quality of patients‟ experiences and differences in care may still exist

due to demographic differences in the populations they serve as well as due to locations of the

institutions. As the Kensington Hospice is associated with the larger organization Kensington

Health as well as the University Health Network, they may receive more donations and have

more resources to provide care compared to other residential hospices which may result in better

dying experiences for people who pass away at Kensington Hospice. A sampling bias may also

have been introduced due to those caregivers of residents who had either exceptionally good or

poor experiences agreeing to participate in the study. Furthermore, study data is cross-sectional

and we are therefore unable to infer causal relationships.

6.3.2 Small Sample size

The comparatively small sample size which limits the power of the analyses requires

that findings of the study be interpreted with caution. Out of the ninety one patients who

received letters from the director of hospice care, we are able to complete interviews with

and analyze data for fifty one patients. Thus, we were able to capture 56% of the patients

who died at the Kensington Hospice during the period of recruitment.

6.3.3 Limitations of Proxy Rated Methodology

There are several limitations associated with proxy interview methodology.

Caregivers own attitudes about dying may have influenced ratings of quality of dying and death.

Caregivers own bereavement distress may have also affected their ratings of quality of dying and

death. This particular group of caregivers may experience less bereavement distress however due

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to the continuous support provided by the hospice social worker compared to caregivers

who receive no formal support.

Ratings by caregivers may also not always reflect patients‟ preferences due to the

subjective nature of the dying experience. We tried to limit this bias by interviewing the primary

caregiver of patients and by asking the caregiver to put themselves in the patient‟s shoes as

much as possible. Furthermore, caregivers had known the patients for an average of 37.04 +

18.49 years and had spent an average of 11.8 + 8.55 hours with patients in the last week of life

which makes it likely that most caregivers did know the preferences of patients very well and

were well suited to make proxy ratings on behalf of patients. The QODD questionnaire being

interviewer administered by one interviewer interviewing all caregivers may have helped reduce

response bias.

The responses of primary caregivers were also subject to recall bias which we tried to

limit by not interviewing more than 1 year after patient death. Lack of adherence to a universal

time span at which family members and health care professionals have completed retrospective

assessments in previous studies however does limit comparability between studies. An

appropriate next step would be suggestion of an appropriate time frame for when QODD

questionnaires should be completed. Nonetheless, suggestion of such a time frame is complicated

by the possibility of influence by recall ability.

6.3.4 Limitations of QODD Questionnaire

Researchers have noted that preferences related to death and dying are individualized and

that the best tools for assessing the quality of dying and death may need to include methods of

weighting the importance of various aspects of patients‟ dying experience. The QODD

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questionnaire does not include a weighting mechanism (Downey et al, 2010). Preferences for

dying are subjective and are often influenced by people‟s previous experiences with death as

well as social, cultural and economic factors which vary by individual. Fulfilling certain

preferences may be more important to one individual in contributing positively to their dying

experience than fulfilling other preferences which may not be as important. A weighing

mechanism would allow for better reflection of patient preferences in evaluations of quality of

dying and death. The absence of importance of certain values makes individual and total

ratings difficult to interpret.

6.4 Future Research

As short length of residential hospice stay was associated with poorer quality of dying and

death, further investigation should consider how to make the dying experience better for those

people who are admitted to residential hospice in the last few days of life. Faster mobilization of

available resources, implementation of specific protocols which address unique needs of people

admitted in the last days of life, and designating rapid action teams may help in improving the

dying experience of those patients admitted at the end of life.

As the majority of QODD ratings in the residential hospice setting were highly favorable,

future research should also focus on determining what aspects of residential hospice care can

be adapted into the hospital setting to make acute care units and palliative care units in

hospitals better able to address dying patients‟ needs and concerns.

Studies should also be conducted to determine reasons for why clinicians and other

palliative care professionals make late referrals to residential hospice and whether those

admissions which occur in patients‟ last days of life may be avoidable. However, short hospice

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stays may not just be due to late referrals but may occur as a result of other factors such as the

limited number of hospice beds in residential hospice or due to the limited number of palliative

beds available in general. Future investigation into the reasons for short hospice stay is crucial.

The study was cross-sectional with caregivers being interviewed 3-6 months of passing

away of their loved ones. Future research would benefit from longitudinal designs to detect

changes in assessments of quality dying and death to determine if timing of assessment has an

effect on evaluations of quality of dying and death.

Future research should also further explore the death related distress (transcendence

domain in QODD questionnaire) we identified in a significant minority of patients. Interestingly,

18.5% of caregivers interviewed in a study evaluating the quality of dying and death in the home,

PCU, and acute care hospital settings in Toronto reported patients as having experienced death

related distress suggesting that this may be a problem that transcends location of death.

Nonetheless, clinicians and researchers should further explore the death-specific distress

identified in the QODD transcendence subscale. Questions as to whether the death–specific

distress experienced by patients at the end of life can even be completely eliminated should be

asked considering fear over dying may be a primal human instinct conserved through evolution.

Studies of caregivers own attitudes and beliefs regarding dying should be conducted to determine

how much their own perspectives may influence their evaluations of quality of dying and death.

In moving forward obtaining retrospective proxy evaluations from family caregivers and

healthcare professionals, along with patients‟ own preferences for comparison will aid in further

establishing the validity of quality of dying and death ratings. Patrick et al (2003) has suggested that

due to the difficulty of conducting interviews with terminal patients at the end of life, ratings of

quality of dying and death in most cases will be limited to caregivers. Thus, a comprehensive

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approach with ratings from multiple raters may be at the price of sample size due to

difficulties in recruiting multiple groups of raters. Nevertheless, continuing to establish the

validity and reliability of proxy ratings for evaluating the quality of dying and death should

remain an important goal for palliative care research as changes in such ratings may present a

possible outcome measure for interventions to improve end of life care.

One way to further develop our understanding of QODD ratings would be to ask

caregivers to make two quality ratings, one set of ratings asking the caregiver to make a rating

based on how the caregiver feels about the quality of the patient‟s death from their perspective

and another set of ratings asking caregivers to make ratings based on how the patient would have

rated the quality of their dying experience. Having both these ratings would allow clinicians and

researchers to better understand what the end-of-life experience was like for the patient from the

caregivers‟ ratings. Furthermore when instructed to make two different sets of ratings, caregivers

may have an easier time separating their own values and beliefs and focusing on the patients‟

values and experiences when making proxy QODD ratings. Asking the patient to pick a

caregiver who the patient believes would be best suited to making QODD ratings on behalf of

the patient may also help in improving the validity of QODD ratings. Moreover, allowing

patients to choose between professional caregivers and family caregivers to make ratings of

questions in different domains of the QODD questionnaire may also help better capture the

quality of the patient‟s dying experience. For example, a patient may choose a nurse caregiver

who spent a lot of time at the patient‟s bedside caring for the patient‟s physical symptoms to

make quality ratings of “symptom control” (i.e. if patient was in pain, if the patient experienced

breathlessness) but choose a family caregiver who the patient communicated about fears over

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dying to make quality ratings of “transcendence” (i.e. if the patient had been unafraid of dying, at

peace with dying, worried about the strain on loved ones).

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Chapter 7: Conclusions

The study aimed to evaluate the quality of dying and death in the residential hospice and

to identify predictors of better quality of dying and death using a reliable and valid measure.

Achieving a good death is an important goal of a residential hospice. This study is the first study

to evaluate the quality of dying and death in Canada in the residential hospice setting. Overall

quality of dying and death was 69.97 with 47.1% of patients falling in the good to perfect range

indicating that a good death is possible outside the home setting.

Death at home has been regarded as leading to a better death than in an acute-care

hospital setting even though many terminally ill patients suffer from symptoms that cannot be

managed at home at the end of life and often require transfer to hospital. Patients and families

may find it comforting to know that a good death is possible outside the home in a setting where

around the clock medical care can be received to manage physical symptoms similar to the acute

care hospital setting. Patients who die in residential hospice are also likely to be sicker than those

who die at home as transfer to residential hospice often occurs when symptoms can no longer be

managed at home. Therefore, our results indicate a good death may be possible outside the home

setting even for those patients who suffer from severe symptoms at the end-of-life. Future

research should investigate how symptom type and severity may differ between those patients

who die in different settings of care. Physical symptom management is done exceptionally well

in the residential hospice setting as was indicated by our results with the large majority of

caregivers rating symptom management in the good to perfect range. Further investigation is

required to determine if physical symptom management can be improved in this setting for the

small number of patients whose caregivers rated symptom management in the terrible to poor

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range. Certain physical symptoms such as breathlessness may be difficult to completely relieve

in some terminally patients at the end of life.

As mentioned in the Future Research section, further investigation is needed to better

understand reasons behind the death related psychological distress identified in a significant

minority of patients. Our results may indicate the need for a spiritual care provider at the hospice.

A psychosocial councilor or spiritual care provider at the residential hospice may help in

reducing the psychological distress that some patients experience at the end of life as indicated

by our results. There is however a possibility that death anxiety cannot be eliminated in a small

percentage of people as a previous study evaluating quality of dying and death in Toronto found

that a significant minority of patients who die at home and in hospital also suffer from death

related psychological distress at the end of life.

After adjusting for confounding factors, our study has identified for the first time that a

length of stay of greater than a week is associated with better quality of dying and death in the

residential hospice setting. Patients who are avoidably referred late to residential hospice may be

unnecessarily deprived the benefits of a residential hospice. Moreover, hospice staff including

physicians may benefit from specialized training to care for patients who are admitted to hospice

in the last days of life. Designated “rapid action teams” who are trained to mobilize resources

and stabilize quickly the physical and psychological symptoms may help in improving the

quality of dying and death of patients who are admitted closer to the end of life.

The effect of some predictors may have been missed due to small sample size. A

longitudinal design with a larger sample size may also help in determining if caregivers‟

assessments of quality and death change with time from passing away of their loved ones.

89

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