Defining Priorities to Improve End of Life Care in Canada

Daren K. Heyland, MD, MSc 1,2,8

Deborah J Cook, MD, MSc 3

Graeme M.Rocker, DM, MHSc 4 ; Peter M. Dodek, MD, MHSc 5

Demetrios J. Kutsogiannis, MD, MHS 6 ; Yoanna Skrobik, MD 7

Xuran Jiang MD, MSc 8, Andrew G. Day MSc 8

S. Robin Cohen PhD 9

1. Department of Medicine, Kingston General Hospital, Kingston, Ontario.2. Department of Community Health and Epidemiology, Queen’s University,

Kingston, Ontario3. Departments of Medicine, Clinical Epidemiology & Biostatistics, McMaster

University, Hamilton, Ontario 4. Department of Medicine, Queen Elizabeth II Health Sciences Center, Halifax, Nova Scotia5. Department of Medicine and Center for Health Evaluation and Outcome Sciences, St.

Paul’s Hospital and University of British Columbia, Vancouver, British Columbia 6. Division of Critical Care Medicine, University of Alberta, Edmonton, Alberta

7. Critical Care, Hopital Maisonneuve Rosemont, Université de Montréal, Québec8. Clinical Evaluation Research Unit, Kingston General Hospital, Kingston, Ontario9. Departments of Oncology and Medicine, McGill University and Jewish General

Hospital, Montreal, Quebec, Canada, for the Canadian Researchers at the End of Life Network (CARENET)*

Correspondence to:Dr. DK HeylandAngada 4Kingston General HospitalKingston, OntarioK7L 2V7613-549-6666x3339 (Phone)613-548-2428 (FAX)Email: dkh2@queensu.ca

Word Count: 2540

Key words: End of life care, palliative care, satisfaction surveys, health service research,

observational study, quality improvement.

1

Abstract

Background: High quality end of life care should be the right of every Canadian. The

objective of this study was to identify high priority opportunities to improve end of life

care.

Methods: In a multi-center, cross-sectional survey of patients who had advanced, life-

limiting illnesses, and their family caregivers, we administered the Canadian Health Care

Evaluation Project (CANHELP) questionnaire along with an overall global rating

question to measure satisfaction with end of life care. Importance was derived from the

Pearson correlation coefficients between individual questions on the CANHELP

questionnaire and a global rating of satisfaction. To determine high priority issues, we

identified those questions that had high importance and low satisfaction scores.

Results: Of the 471 patients and 255 family members approached, 363 patients and 193

family members participated (response rates of 77% and 76%, respectively). Priority

areas for improvement from the patients’ perspectives related to the feeling of peace,

assessment and treatment of emotional problems, physician availability, and satisfaction

that the physician took a personal interest in them, communicated clearly and

consistently, and listened. Similar priorities were identified from family members’

perspectives; however, additional priorities included timely information about the

patient’s condition and discussions with the doctor regarding final location of care and

use of end of life technology.

2

Interpretation: Our analysis suggests that improved psychological and spiritual support,

better advance care planning, and improved relationships with physicians, including

better communication and decision making, may efficiently improve end of life care in

Canada.

Word count: 243

3

Introduction

Despite the fact that a ‘quality death’ is an espoused right of Canadians,1 this is not

achieved for many dying patients and their families. Recent reviews and observational

studies describe considerable dissatisfaction with end of life care, indicating that there are

still opportunities for improvement.2-5

Improvement initiatives would ideally be informed by the experiences and expectations

of patients and family members. However, efforts to improve end of life care are often

hampered by inadequate definitions of quality and by suboptimal measurement tools.6-8

In a large cross-sectional survey, we recently defined what matters most to seriously ill

patients as they approach the end of life.9 Both patients and family members reported that

it was extremely important that they have trust and confidence in the physicians who are

caring for them or their loved ones.9 Avoidance of unwanted life support, effective

communication, continuity of care, and feelings of life completion were also rated as

highly important.9 Building on these findings, we used these comprehensive ratings of

importance to develop and validate a novel questionnaire to measure satisfaction with end

of life care.10 Using this questionnaire, we have formally evaluated the care received at

the end of life in several Canadian centers.

The objective of this study was to identify opportunities for improvement in care among

patients who had advanced, life-limiting diseases, and their families. We identified these

opportunities by focusing on care issues that were considered important but also had low

4

ratings of satisfaction. By targeting these quality gaps for change initiatives, we can

address the highest priorities in improving end of life care in Canada.

5

Methods

This study was a cross-sectional survey of patients who had advanced, life-limiting

illnesses and their family caregivers. Patients and family caregivers were recruited from

both inpatient and outpatient facilities (and affiliated home-care programs) at the

Kingston General Hospital in Kingston; St. Joseph’s Healthcare, Hamilton; St Paul’s

Hospital, Vancouver; Queen Elizabeth II Health Science Center, Halifax; The New

Brunswick Extra Mural Program; Royal Alexandra Hospital, Edmonton; and Hôpital

Maisonneuve-Rosemont, Montreal.

To be eligible, patients had to understand English or French, be capable of giving

informed consent, and be > 55 years of age with clinical criteria for advanced chronic

obstructive pulmonary disease (COPD), congestive heart failure (CHF), liver disease or

metastatic cancer. In addition, any patient > 80 years of age in hospital who had a

medical diagnosis as the primary cause of admission or any patient > 80 years of age who

was enrolled in a home care program using long term oxygen therapy and who had a

primary diagnosis of COPD, CHF, or metastatic cancer was consider eligible (See

Appendix A for detailed description of inclusion criteria). Using clinical judgment, we

excluded patients who were considered cognitively impaired or otherwise unsuitable for

detailed questionnaire administration because of communication problems, physical or

emotional frailty. We obtained written informed consent from willing patients and then

asked them to identify a suitable family caregiver. If the patient was not competent or

declined involvement, we approached eligible family caregivers independent of the

patient’s involvement (see Appendix A for eligibility criteria). The research assistant then

6

conducted separate face-to-face interviews with the patient and family caregivers and

administered the questionnaires described below.

The Canadian Health Care Evaluation Project (CANHELP) Questionnaire

The details of our initial development of the CANHELP questionnaire have been

published elsewhere.2,9,11-12 In brief, we generated items to be included in this

questionnaire from a review of the published literature, focus groups with experts, and

interviews with patients. We grouped these items into the following6 domains based on

our conceptualization of the major themes that emerged from our data: 1) Characteristics

of the Doctors and Nurses (8 items); 2) Illness Management (7 items); 3) Health Service

Characteristics (4 items); 4) Communication and Decision-making (11 items); 5)

Relationships with Others (4 items); and 6) Spirituality and Meaning (3 items). Prior to

the domain-specific items, the respondents were asked to rate their overall satisfaction

with the care they had received in the past month. We developed one version for the

patient and 2 for the family caregiver (one if the patient was alive, and one if the patient

had died). Response options were: 1=Not at all Satisfied, 2=Not very Satisfied,

3=Somewhat Satisfied, 4=Very Satisfied, and 5=Completely Satisfied. We have

demonstrated that the CANHELP questionnaire correlates as expected with other

established measures at the end of life (construct validity), has good internal consistency

(Cronbach’s alpha >0.70), and can be grouped into valid subscales.10 The finalized

version was used for this study (see www.thecarenet.ca for copy of current

questionnaire).

7

We recorded demographic information at the time of the interview. We assessed patient

functional status using the Palliative Performance Scale;13 co-morbidities were

categorized and calculated according to the Charlson Co-morbidity Index.14

We describe patient and family caregiver characteristics as counts and percentages for

categorical variables and means with standard deviations for continuous variables.

Responses to CANHELP questionnaires were summarized as means with standard

deviations and ranges. To enable comparisons with previous work using this instrument,

we also report the percent of respondents who were ‘completely satisfied.’ To determine

the high priority opportunities for improvement from our satisfaction data, we developed

plots of importance versus performance.15 We defined the relative importance of the

items according to their Pearson correlation coefficient with the global rating of

satisfaction.15 Thus, items uncorrelated with overall satisfaction were considered

unimportant. Scatter plots were used to assess the relationship between this measure of

importance and the mean satisfaction score for each CANHELP question. We used grid

lines to separate the scatter plot into 4 quadrants; the horizontal and vertical lines were

placed at the median of the respective data points to identify 4 separate quadrants.

Questions in the upper left quadrant were important (i.e., they correlated highly with

overall satisfaction) and had the lowest satisfaction scores relative to other questions. We

deemed the care issues identified by these questions to have the highest priority for

improvement.15 All analyses were performed using SAS version 9.1 (SAS Institute,

Cary, NC).

8

Following Queen’s University Research Ethics Board approval of the study, all other

participating site’s Ethics Boards subsequently approved the study.

9

Results

From August 2007 to January 2009, 622 patients at participating sites were identified as

potentially eligible according to the criteria outlined above; 151 were excluded for

communication reasons (e.g., inability to understand English or French; inability to speak

or hear, or impaired mental status); or unsuitability (deemed unable to tolerate an

interview due to lack of physical stamina or their psychological state). Of the 471

remaining eligible patients, 363 consented for an overall response rate of 77.1%. Two

patients withdrew before completing the interview leaving 361 questionnaires evaluable

for analysis. Of the evaluable patients, 175 (48.5%) had an eligible family caregiver

available to interview. Independently, we also approached 80 family caregivers of the

non-participating patients that met the inclusion criteria for a total of 255 family

caregivers. A total of 193 consented for a response rate of 75.7%. Table 1 displays the

demographics of included patients and family caregivers. Due to sporadic missing data,

the number of responses used to calculate the average item scores and correlations with

the global scores is slightly less than 361 patients and 193 family caregivers. The most

frequently missing item was satisfaction with home care services which was missing for

60 (16.6%) patient and 33 (17.1%) caregiver questionnaires. In both questionnaires,

every other item was at least 93.3% complete.

Patients

The correlation coefficient for the score of each individual question with the global

satisfaction rating and the % completely satisfied for each question is shown in Appendix

B. Using the magnitude of these correlation coefficients to determine importance, we

10

identified the 5 most important issues from the patients’ perspectives: 1) being treated by

doctors and nurses in a manner that preserved their sense of dignity (Pearson correlation

coefficient: 0.46); 2) receiving good care when a family member or friend was not able to

be with them (0.42); 3) aspects of their medical care, such as the tests that were done and

the treatments that were given (0.41); 4) the health care workers worked together as a

team to look after them (0.41); and 5) the doctors and nurses looking after them were

compassionate and supportive (0.41).

The mean satisfaction score for the global rating of satisfaction question was 4.3 (SD 0.8,

range 1.0-5.0). Patients were least satisfied with the following issues: 1) doing special

things they wanted to do during the past month (mean satisfaction score 3.08); 2) their

level of confidence in their own ability to manage their illness (3.18); 3) their

understanding of what to expect in the end stage (3.41); 4) their ability to contribute to

others in a meaningful way (3.52); and 5) discussions with their physician regarding final

location of care (3.65 ) and the use of technology at the end of life (3.67) (see Appendix

A).

Figure 1 shows the relationship between the importance scores and the mean satisfaction

scores for each question. The issues localized to the upper left quadrant and deemed the

highest priority relate to the patients’ feelings of peace, the availability of the doctor, the

assessment and treatment of their emotional problems, whether their doctor took a

personal interest in them and listened to them, the consistency of information about their

11

conditions from all doctors and nurses, and whether things were explained in a way they

could understand (see Table 2).

Family Caregiver

Family caregivers’ global rating of satisfaction with how they were treated was 4.2 (SD=

0.8, range 1.0-5.0). Appendix C shows the importance and satisfaction scores for each

question on the family caregiver satisfaction survey. Appendix D shows the performance-

importance plots from the family caregiver perspective. Priority issues from family

caregivers’ perspective are itemized in Table 2.

12

Interpretation

In this study of 361 seriously ill patients and 193 family members from several centers,

we documented that overall satisfaction with end of life care was good (overall score

4.3/5 for patients and 4.1/5 for family members). However, these results should not be

interpreted as saying there are no opportunities for improvement in end of life care for

this population. It has been documented previously that respondents tend to over-report

positive responses.16 For individual patients and their families and for specific aspects of

care, there were many ratings of dissatisfaction and the proportion of respondents that

rated ‘completely satisfied’ was as low as 9% and only as high as 57%. To focus quality

improvement initiatives on issues that matter the most to patients, we determined the

level of importance of each question by assessing the correlation of scores from

individual questions with a global rating of satisfaction,15 thereby reflecting the extent to

which each question is associated with an independent measure of overall satisfaction.

We found that being cared for while preserving dignity, being treated with respect and

compassion, having trust and confidence in the doctor, and being well looked after by the

health care team are all important aspects of good quality end of life care. These findings

are consistent with other populations reporting similar aspects of care as important at the

end of life.9,17-19

Subsequently, we plotted the calculated measures of importance with the directly

measured scores of satisfaction for individual items. For both patients and families, the

highest priority quality improvement issues were improving the emotional support

provided to patients, improving the quality of the relationship between the patient,

13

family, and the doctor, and improving communication and decision making. Deficiencies

in physician relationships and communication and decision-making have been

highlighted previously.2,20-23 In our work, these deficiencies were centered around

physicians’ attentiveness, frequency and consistency of interactions, and planning of the

logistics of end of life care including the limitation of life sustaining therapies. These

gaps did not appear to relate to medical aspects of care; satisfaction with test and

treatments was rated very high by patients.

Whereas high levels of anxiety and depression have been reported previously in cancer

patients,24-25 our finding that there is a large unmet need for emotional support in patients

who have advanced medical diseases and in their families underscores the need to

improve our assessment and treatment of symptoms of depression and anxiety. ‘Being at

peace’ has been identified as a high priority issue for improvement. This finding is

consistent with results from other published studies which state that existential and

spiritual concerns are very prevalent at the end of life.26-27 This issue is also relevant to

family members. Although ‘being at peace’ does not have the same importance to family

caregivers in this survey, there is evidence from a longitudinal study that family members

ratings of satisfaction with issues related to their own spirituality and sense of meaning

significantly deteriorate in the months after the death of a loved one.11 We hypothesize

that a psychological or spiritual supportive intervention may help to improve satisfaction

with end of life care.28

Limitations:

14

The limitations of this study relate to the fact that we did not directly measure

importance. Asking patients directly to rate the level of importance of each question

would have seriously compromised the feasibility of this study by adding to the burden of

data collection. In this analysis, we used median scores for thresholds on the

performance-importance grids. Depending on institutional resources available to

approach opportunities for improvement, the threshold for these lines could be set

elsewhere to identify issues for improvement. Alternatively, institutions could select

among items outside of the upper left quadrant to focus upon. While there is no single

approach to prioritizing these quality gaps, we suggest that such heuristic divisions

provide a useful starting point. Moreover, given the cross sectional nature of this study,

we cannot be certain whether dissatisfaction with care leads to emotional distress or

whether emotional distress leads to dissatisfaction with care. Furthermore, we have used

the CANHELP questionnaire as a ‘screening tool’. Responses to this questionnaire may

illuminate in general terms where the problems lie but in some cases more detailed

assessments will be required to specifically understand the unmet needs. Finally, our

study sample was primarily a Caucasian population; there may be other ethnic or cultural

groups of patients to which our results may not apply. To overcome this deficiency, we

have developed a version of the CANHELP questionnaire to enable individual patients

and family caregivers to rate each aspect of care both in terms of its importance and their

satisfaction so we can derive a priority list of quality improvement targets individualized

to a given patient and/or their family (see www.thecarenet.ca for this individualized tool).

Notwithstanding these limitations, the strengths of this study include the use of a

15

validated questionnaire in patients who had diverse medical conditions in multiple

settings.

Conclusions:

In these patients with advanced, life limiting diseases and their family members, we have

identified, from their perspectives, aspects of care that are a high priority for

improvement and which may have the greatest impact in improving overall end of life

care. Psychological interventions, spiritual support, better advance care planning,

improving the nature of physician, patient, and family relationships and enhancing

specific aspects of communication and decision making could help patients and their

families realize their right to quality care at the end of their lives. Such hypotheses

require empiric testing in future interventional studies.

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Acknowledgments

We thank all members of CARENET who have contributed to the evolution and development of this work. We would also like to thank the following research assistants who helped in the development of this questionnaire and the execution of this study: Deborah Pichora, Jennifer Korol, Nancy Paul, Joanne Harvey, Sheilagh Mans, Joanne Young, Wendy Conrad, Norine Whalen, Pat Thompson, Jeanette Suurdt, Melissa TeBrake, Neala Hoad, Chantal Tessmer, Janice Palmer, and Annabelle Mathieu. D. Cook holds a Canada Research Chair with the Canadian Institutes of Health Research.

Funding StatementThis study was supported by the Canadian Researchers at the End of Life Network (CARENET). CARENET is supported by a grant from the Canadian Institutes of Health Research and Heart and Stroke Foundation of Canada.

Contributor’s Statement

Heyland, Day, Jiang, and Cohen designed the study protocol with input from other co-investigators. Heyland, Cook, Rocker, Dodek, Kutsogiannis, and Skrobik participated in acquisition, analysis, and interpretation of data and the writing of the manuscript.Jiang, Day, and Cohen were responsible for the analysis and critically reviewed the manuscript. All authors gave final approval of the version to be published

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Table 1. Demographics of Participating Patients and Family Caregivers

Patients (n=361)

Caregivers (n=193)

Age 76.6±9.9 61.9±13.3% Female 175 (48.5%) 144 (74.6%)Location of interview

Home or retirement Home 81 (22.4%) 62 (32.1%)

Hospital 256 (70.9%) 114 (59.1%)

Palliative care unit 24 (6.7%) 14 (7.3%)

Long term care or nursing home 0 (0.0%) 1 (0.5%)

Other 0 (0.0%) 2 (1.0%)

Ethnicity

Caucasian 313 (86.7%) 162 (83.9%)First Nations 36 (10.0%) 22 (11.4%)

Asian/Pacific islander 4 (1.1%) 5 ( 2.6%)African/Black North American 5 (1.4%) 1 (0.5%)

East Indian 1 (0.3%) 0 (0.0%)Other 2 (0.6%) 2 (1.0%)

Unknown 0 (0.0%) 1 (0.5%)Education

Elementary school or less 50 (13.9%) 7 (3.6%)Some high school 118 (32.7%) 29 (15.0%)

High school graduate 80 (22.2%) 43 (22.3%)Some college or trade school 36 (10.0%) 23 (11.9%)

College diploma or trade school 30 (8.3%) 39 (20.2%)Attended university 15 (4.2%) 8 (4.1%)

University degree 21 (5.8%) 27 (14.0%)Postgraduate degree 8 (2.2%) 11 (5.7%)

Other 0 (0.0%) 4 (2.1%)Unknown 3 (0.8%) 2 (1.0%)

Primary Entry Criteria into the Study

Age ≥ 80 97 (26.9%)Chronic Obstructive Pulmonary Disease 128 (35.5%)

Heart Failure 50 (13.9%)Cirrhosis 5 (1.4%)

Cancer 81 (22.4%)You are caring for your…

Husband/wife/partner 94 (48.7%)Parent 69 (35.8%)

Parent-in-law 7 (3.6%)Daughter/son 3 (1.6%)Sister/brother 5 (2.6%)

18

Other 12 (6.2%)Unknown 2 (1.0%)

Palliative Performance Scale Score 60.2±15.8

Charlson Comorbidity Index 2.7±2.3

Values are reported as n (%) or mean ± standard deviation.

19

Table 2. High Priority Quality Improvement Items

Patients’ Perspective^ Family Caregivers’ Perspective*Spiritual/Emotional needs

38. How satisfied are you that you were at peace during the past month?

12. How satisfied are you that emotional problems you had during the past month (for example: depression, anxiety) were adequately assessed and controlled?

14. How satisfied are you that emotional problems (for example: depression, anxiety) your relative had during the past month were adequately controlled?

Relationship with Doctors3. How satisfied are you that your doctor(s) took a personal interest in you during the past month?4. How satisfied are you that your doctor(s) were available when you needed them (by phone or in person) during the past month?

5. How satisfied are you that the doctor(s) were available when you or your relative needed them (by phone or in person) during the past month?

Communication and Decision Making23. How satisfied are you that the doctor(s) listened to what you had to say during the past month?

26. How satisfied are you that the doctor(s) listened to what you had to say during the past month?

22. How satisfied are you that you received consistent information about your condition from all doctors and nurses looking after you during the past month?

24. How satisfied are you that you received consistent information about your relative’s condition from all the doctors and nurses looking after him or her during the past month?

21. How satisfied are you that doctor(s) explained things relating to your illness in a way you could understand during the past month?

25. How satisfied are you that you received updates about your relative’s condition, treatments, test results, etc. in a timely manner during the past month?27. How satisfied are you with discussions during the past month with the doctor(s) about where your relative would be cared for (in hospital, at home, or elsewhere) if he or she were to get worse?29. How satisfied are you with discussions during the past month with the doctor(s) about the use of life sustaining technologies (for example: CPR or cardiopulmonary resuscitation, breathing machines, dialysis)?

Illness Management

16. How satisfied are you that, during the past month, your relative received good care when you were not able to be with him/ her?

^ number corresponds to question on patient version of questionnaire as illustrated in on line Appendix Table 1.* number corresponds to question on family caregiver version of questionnaire as illustrated in on line Appendix Table 2.

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Figure 1 – Performance-Importance Grid for Patient CANHELP Questionnaire

3.0 3.5 4.0 4.5 5.0

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Legend: A plot of the mean patient satisfaction with care for each question on the CANHELP questionnaire and correlation of that question with overall satisfaction from the patient’s point of view. Corresponds to Table 1 in online Appendix. The gridlines are placed at the median value for the question means (4.12) and correlations (0.29).× indicate the actual location of the data and the number closest to the × is the CANHELP question number.

Appendix A:

Detailed Patient Eligibility Criteria

To be eligible for this study, patients had to be able to understand English or French, be

capable of giving informed consent, and meet the following criteria:

A. > 55 years of age and have one or more of the following diseases at an advanced

stage:

i) Moderate to severe chronic obstructive pulmonary disease (COPD) defined by

Canadian Thoracic Society (CTS) criteria. (29) Moderate COPD: shortness of breath

causing the patient to stop walking after 100 meters or a few minutes on level ground

(MRC score of 3-4) and one or more acute exacerbations of COPD requiring hospital

admission within the last year, an ICU admission, a forced expiratory volume in 1 sec

<30% predicted, or a body mass index < 21; Severe COPD: severe shortness of breath

resulting in the patient being too breathless to leave the house, or breathlessness after

dressing/undressing (i.e., Medical Research Council score29 of 5), or the presence of

chronic respiratory failure (PaCO2>45) or clinical signs of right heart failure.

ii) Congestive heart failure (CHF) defined as New York Heart Association class IV

symptoms or left ventricular function < 20%.

iii) Cirrhosis confirmed by imaging studies or documentation of esophageal varices and

at least one of three conditions: a) history of hepatic coma, b) Child’s class C liver

disease, or c) Child’s class B liver disease with gastrointestinal bleeding.

iv) Metastatic Cancer

OR

B. Any patient > 80 years of age in hospital who had a medical diagnosis as the primary

cause of admission;

OR

C. Any patient > 80 years of age who was enrolled in a home care program using long

term oxygen therapy and who had a primary diagnosis of COPD, CHF, or metastatic

cancer.

Family Caregiver Eligibility Criteria

For the purpose of this study, we defined an eligible family caregiver as a family member or close friend of an eligible patient who provided the most care to the patient and was not paid to do so, was greater than 18 years of age, understood English or French, and was competent to give informed consent.

Appendix B. Satisfaction Scores for Patient CANHELP Questionnaire in order of Relative Importance

Questions How satisfied are you ….

Pearson correlation coefficients

(Importance)

Satisfaction (Mean)

%Completely Satisfied

9. that you were treated by the doctors and nurses in a manner that preserved your sense of dignity during the past month? 0.46 4.37 50.28%

14. that during the past month, you received good care when a family member or friend was not able to be with you? 0.42 4.26 46.48%

10. with the tests that were done and the treatments that were given during the past month for your medical problems? 0.41 4.26 43.26%

16. that health care workers worked together as a team to look after you during the past month? 0.41 4.24 43.02%

8. that the doctors and nurses looking after you during the past month were compassionate and supportive? 0.41 4.24 42.34%

7. that the doctors and nurses who looked after you during the past month knew enough about your health problems to give you the best possible care? 0.40 4.22 45.22%

18. with the environment or the surroundings in which you were cared for during the past month? 0.38 4.22 43.14%

11. that physical symptoms you had during the past month (for example: pain, shortness of breath, nausea) were adequately assessed and controlled? 0.38 4.13 40.00%

22. that you received consistent information about your condition from all doctors and nurses looking after you during the past month? 0.37 4.05 37.96%

19. that the care and treatment you received during the past month was consistent with your wishes? 0.36 4.41 57.34%

12. that emotional problems you had during the past month (for example: depression, anxiety) were adequately assessed and controlled? 0.34 3.95 38.58%

4. that your doctor(s) were available when you needed them (by phone or in person) during the past month? 0.34 3.92 36.41%

13. with the help you received with personal care during the past month (for example: bathing, toileting, dressing, eating)? 0.34 4.29 46.07%

6. with the level of trust and confidence you had in the nurses who looked after you during the past month? 0.33 4.44 55.59%

38. that you were at peace during the past month? 0.32 3.77 33.33%5. with the level of trust and confidence you had in the doctor(s) who looked after you during the past month? 0.32 4.24 50.42%

3. that your doctor(s) took a personal interest in you during the past month? 0.30 3.96 36.49%

21. that the doctor(s) explained things relating to your illness in a way you could understand during the past month? 0.29 4.08 42.02%

23. that the doctor(s) listened to what you had to say during the past month? 0.29 3.99 38.66%

20. that the doctor(s) explained things relating to your illness in a straightforward, honest manner during the past month? 0.29 4.13 42.94%

2. that you knew the doctor(s) in charge of your care during the past month? 0.27 3.70 32.78%

24. that you received updates about your condition, treatments, test results, etc. in a timely manner during the past month? 0.26 3.90 33.05%

15. with the home care services you received during the past month? 0.23 4.14 47.51%

28. with your role during the past month in decision making regarding your medical care? 0.22 3.97 37.78%

32. that your relationships with family members and others you care about were strengthened during the past month? 0.22 4.16 44.48%

35. with the level of confidence you felt during the past month in your own ability to manage your illness? 0.21 3.18 14.53%

26. with discussions during the past month with your doctor(s) about the use of life sustaining technologies (for example: CPR or cardiopulmonary resuscitation, breathing machines, dialysis)?

0.21 3.67 34.88%

25. with discussions during the past month with your doctor(s) about where you would be cared for (in hospital, at home, or elsewhere) if you were to get worse?

0.19 3.65 31.75%

37. that you did special things you wanted to do during the past month (for example: resolve conflicts, complete projects, participate in special family events, travel)?

0.19 3.08 18.29%

36. that you were able during the past month to contribute to others in a meaningful way? 0.18 3.52 24.50%

27. that, during the past month, you have come to understand what to expect in the end stage of your illness (for example: in terms of symptoms and comfort measures)?

0.17 3.41 28.65%

17. that you were able to manage the financial costs associated with your illness during the past month? 0.17 4.12 50.56%

33. that during the past month you were not a burden on your family or others you care about? 0.15 3.76 35.69%

30. with discussions during the past month, involving a family member or someone who would make decisions for you, about your wishes for future care in the event you yourself are unable to make those decisions?

0.15 4.26 57.26%

29. with the level of confidence you felt during the past month in the ability of a family member or friend to help you manage your illness? 0.12 3.97 42.12%

34. that you had family or friends to support you when you felt lonely or isolated during the past month? 0.11 4.23 50.85%

31. that you were able during the past month to talk comfortably about your illness, dying, and death with the people you care about? 0.06* 4.12 46.69%

Legend: The Pearson Correlation Coefficient is between individual questions and the global rating of satisfaction. These coefficients are all statistically significant except where denoted with an asterisk (* p>0.05). The higher the coefficient, the more ‘important’ the question is as it has a stronger relationship with overall satisfaction. Questions reported in order of highest to lowest importance. Satisfaction scores can range from 0-5, with higher scores indicating more satisfied where ‘5’ = ‘completely satisfied.’ The highlighted rows are those that are considered high priority quality improvement targets.

Appendix C. Satisfaction Scores From Family Caregivers’ Perspective in Order of Relative Importance to Overall Satisfaction with Care Provided to Family Caregiver

Questions How satisfied are you…

Pearson correlation coefficients

(Importance)

Satisfaction (Mean)

%Completely Satisfied

6. with the level of trust and confidence you had in the doctor(s) who looked after your relative during the past month? 0.58 4.05 38.22%

5. that the doctor(s) were available when you or your relative needed them (by phone or in person) during the past month? 0.55 3.82 31.25%

10. that the doctors and nurses looking after your relative during the past month were compassionate and supportive of you? 0.53 3.95 31.41%

9. that the doctors and nurses looking after your relative during the past month were compassionate and supportive of him or her? 0.51 4.26 42.71%

4. that the doctor(s) took a personal interest in your relative during the past month? 0.50 3.95 33.85%

8. that the doctors and nurses who looked after your relative during the past month knew enough about his or her health problems to give the best possible care?

0.46 4.08 33.33%

15. with the help your relative received with personal care during the past month (for example: bathing, toileting, dressing, eating)? 0.46 3.96 37.70%

24. that you received consistent information about your relative’s condition from all the doctors and nurses looking after him or her during the past month?

0.46 3.85 31.58%

26. that the doctor(s) listened to what you had to say during the past month? 0.46 3.86 30.69%

22. that the doctor(s) explained things relating to your relative’s illness in a straightforward, honest manner during the past month? 0.44 4.03 36.65%

25. that you received updates about your relative’s condition, treatments, test results, etc. in a timely manner during the past month? 0.44 3.66 23.56%

14. that emotional problems (for example: depression, anxiety) your relative had during the past month were adequately controlled? 0.44 3.59 20.86%

16. that, during the past month, your relative received good care when you were not able to be with him/ her? 0.41 3.79 30.89%

11. that your relative was treated by those doctors and nurses during the past month in a manner that preserved his or her sense of dignity? 0.40 4.22 41.97%

27. with discussions during the past month with the doctor(s) about where your relative would be cared for (in hospital, at home, or elsewhere) if he or she were to get worse?

0.40 3.61 30.43%

31. with your role during the past month in decision-making regarding your relative’s medical care? 0.40 3.98 38.50%

13. that physical symptoms (for example: pain, shortness of breath, nausea) your relative had during the past month were adequately controlled? 0.40 4.03 35.23%

18. that health care workers worked together as a team to look after your relative during the past month? 0.38 4.10 33.86%

21. that the care and treatment your relative received during the past month was consistent with his or her wishes? 0.38 4.19 41.80%

29. with discussions during the past month with the doctor(s) about the use of life sustaining technologies (for example: CPR or cardiopulmonary resuscitation, breathing machines, dialysis)?

0.38 3.68 37.22%

23. that the doctor(s) explained things relating to your relative’s illness in a way you could understand during the past month? 0.36 4.05 37.50%

7. with the level of trust and confidence you had in the nurses who looked after your relative during the past month? 0.36 4.23 41.97%

12. with the tests that were done and the treatments that were given during the past month for your relative’s medical problems? 0.33 4.07 34.90%

17. with recent home care services your relative received? 0.30 3.89 39.38%20. with the environment or the surroundings in which your relative was cared for during the past month? 0.29 3.94 26.56%

3. that you knew the doctor(s) in charge of your relative’s care during the past month? 0.29 3.67 27.98%

32. with discussions with your relative during the past month about wishes for future care in the event he or she is unable to make those decisions? 0.28 3.96 42.16%

19. that you were able to manage the financial costs associated with your relative’s illness during the past month? 0.26 4.07 44.21%

38. that you were able during the past month to contribute to others in a meaningful way ? 0.25 3.81 32.45%

30. that, during the past month, you have come to understand what to expect at the end stage of your relative’s illness (for example: in terms of symptoms and comfort measures)?

0.24 3.62 28.11%

36. that during the past month you had enough time and energy to take care of yourself? 0.23 3.29 17.02%

40. that you were at peace during the past month? 0.23 3.33 19.68%34. that your relationship with your relative was strengthened during the past month? 0.23 4.14 47.09%

37. that you had family or friends to support you when you felt lonely or isolated during the past month? 0.21 4.04 43.39%

33. that you were able during the past month to talk comfortably with your relative about his/ her illness, dying, and death? 0.18 3.86 38.10%

39. that you and your relative did special things (for example: resolve conflicts, complete projects, participate in special family events, travel) you wanted to do during the past month?

0.16 3.14 20.11%

35. with the level of confidence you felt during the past month in your relative’s ability to manage his/her own illness? 0.14 2.72 8.90%

28. with the level of confidence you felt during the past month in your ability to help your relative manage his/ her illness? 0.12* 3.67 25.00%

Legend: The Pearson Correlation Coefficient is between individual questions and the global rating of satisfaction. These coefficients are all highly statistically significant except where denoted with an asterisk (* p<0.05). The higher the coefficient, the more ‘important’ the question is as it has a stronger relationship with overall satisfaction. Questions reported in order of highest to lowest importance. Satisfaction scores can range from 0-5, with higher scores indicating more satisfied where ‘5’ = ‘completely satisfied.’ The highlighted rows are those that are considered high priority quality improvement targets.

Appendix D. Performance-Importance Grid for Family CANHELP Questionnaire

2.5 3.0 3.5 4.0 4.5 5.0

0.0

0.1

0.2

0.3

0.4

0.5

0.6

Satisfaction

Cor

rela

tion

Coe

ffici

ent w

ith G

loba

l Rat

ing

Sat

isfa

ctio

n Q

uest

ion

3

4

5

6

7

8

910

11

12

13

1415

16

35

28

17

18

19

20

22

23

242625

27

29

30

31

32

21

33

3436 37

38

39

40

Legend: A plot of the mean satisfaction with care provided to family caregiver for each question on the CANHELP questionnaire and correlation with that question and overall satisfaction from the family caregiver’s point of view. Corresponds to Table 2 in online Appendix. The gridlines are placed at the median value for the question means (3.94) and correlations (0.38).× indicate the actual location of the data and the number closest to the × is the CANHELP question number

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