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Attitudes of Terminally Ill Cancer Patients About Euthanasia and Assisted Suicide: Predominance of Psychosocial Determinants and Beliefs Over Symptom Distress and Subsequent Survival

From the Department of Medicine, Baylor College of Medicine, Houston Center for Utilization Studies and Quality of Care, Veterans Affairs Medical Center, and Department of Symptom Control and Palliative Care, M.D. Anderson Cancer Center, Houston, TX; and Palliative Care Unit, Grey Nuns Hospital, Edmonton, Alberta, Canada.

Address reprint requests to Maria E. Suarez-Almazor, MD, PhD, Health Services Research, Baylor College of Medicine, Veterans Affairs Medical Center (Station 152), 2002 Holcombe Blvd, Houston, TX 77030; email: mes{at}bcm.tmc.edu

	ABSTRACT

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PURPOSE: Although euthanasia and physician-assisted suicide (PAS) are controversial issues, the views of those most affected, terminal patients, are seldom explored. Our objective was to assess whether the attitudes about euthanasia/PAS of terminally ill cancer patients were determined by their symptomatic distress.

PATIENTS AND METHODS: We conducted a survey of 100 patients with terminal cancer. Statements related to the legalization of euthanasia/PAS were scored using Likert scales. We also asked patients how often they had considered ending their lives. Their responses were analyzed in relation to disease characteristics, including an assessment of symptomatic severity, sociodemographic features, general beliefs about the suffering of cancer patients, and survival.

RESULTS: Most patients (69%) supported euthanasia or PAS for one or more situations. The association between these attitudes and symptoms was weak, consistent in univariate analysis only for shortness of breath. No significant associations were observed with pain, nausea, well-being, loss of appetite, depression, or subsequent survival. Agreement with euthanasia was significantly related to male sex, lack of religious beliefs, and general beliefs about the suffering of cancer patients and their families. In multivariate analysis, the only characteristics that remained statistically associated with support were the strength of religious beliefs and the perception that patients with cancer are a heavy burden on their families. Frequency of suicidal ideation was associated with poor well-being, depression, anxiety, and shortness of breath, but not with other somatic symptoms such as pain, nausea, and loss of appetite.

CONCLUSION: Symptom intensity had limited impact on the attitudes about euthanasia of terminally ill cancer patients. Our findings suggest that patient views are primarily determined by psychosocial traits and beliefs, as opposed to disease severity or symptomatic distress.

	INTRODUCTION

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AS THE POPULATION ages, a substantial increase in the number of cancer deaths is expected.¹ Euthanasia and physician-assisted suicide (PAS) are controversial issues, and are often debated in public, professional, and political forums. However, the preferences of those directly affected, terminally ill patients, have seldom been explored. Most studies reporting the end-of-life attitudes of terminally ill cancer patients have focused on suicidal ideation and death wish, or the views of those who request assistance to end their lives from their physicians.^2-5 A few have examined the views of cancer patients at large,^6-10 and some have reported the views of other patient populations.^11-14 For the public at large, support for euthanasia is generally related to concerns about intractable suffering and potential symptom distress in patients with advanced disease, most often pain.¹⁵ In patients, these views seem to be related to their beliefs about potential pain and suffering, but not to their current levels of pain.^8,9,14 Furthermore, studies reporting patient requests to hasten death are more likely to report as a reason for their requests values such as loss of autonomy rather than physical symptoms.^16-18

We have previously reported that patients had views on euthanasia and PAS similar to those held by the public.⁶ A marked polarization of beliefs was observed, with most patients either strongly agreeing or strongly disagreeing with these interventions. To further investigate potential determinants or correlates of these opposing views, we expanded our original survey by interviewing an additional number of patients with terminal cancer. The objective of this study was to evaluate whether patient attitudes about euthanasia and PAS were determined by the symptomatic burden from their illness. We also examined whether these attitudes were related to the patients’ survival, under the hypothesis that patients closer to the time of death may have different preferences than those expected to live longer.

	PATIENTS AND METHODS

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One hundred terminally ill cancer patients seen at one of three sites of the Palliative Care Regional Program in Edmonton, Canada, were included on the study. In Edmonton, palliative care delivery is regionally based. Since Canada has universal health care, all cancer patients in the region are potentially eligible to receive palliative care when they enter the terminal phase. The program delivers care to approximately 80% of patients who die of cancer in the Edmonton area.¹⁹ The sample included in this study is representative of terminally ill cancer patients, with symptoms or comorbidities requiring specialized treatment. The initial survey of 62 consecutive patients had been conducted in 1995 and 1996; in that study, the attitudes of patients were compared with those of the public and physicians. All patients had completed a symptomatic evaluation (routine assessment in the Palliative Care Program) but the results had not been analyzed because the sample size was considered to be too small for this objective. An additional 38 patients were included in 1996 and 1997 who were interviewed using the same protocol. Patient inclusion criteria were as follows: terminal cancer defined as locally advanced or metastatic disease nonresponsive to antineoplastic treatment, adequate cognition defined as a mini–mental status score of 24 or higher,²⁰ and English language proficiency.

The sample was consecutively accrued until 100 patients were surveyed. At the time of the survey, 17% were receiving outpatient care and 83% were receiving inpatient care. One hundred thirty-eight patients had been potentially eligible. Of these, 31 patients did not want to participate; in an additional three, the family did not allow us to contact them for the study, two patients were too anxious to complete the survey, and an additional two had just been newly diagnosed with cancer and we felt it was unethical to impose the added stress of the interview on them. The participation rate of potentially eligible patients was 72%.

Survey
All the patients were interviewed by research nurses from the palliative care unit not involved in the clinical care of the patients. The survey was administered face to face to evaluate any psychological distress that would require the termination of the interview.

The survey included six items concerning euthanasia and PAS and three items regarding the suffering of patients with cancer and burden to their families (Table 1). All the items were affirmative statements with Likert-type responses on a 1- to 7-point scale, where 1 = strongly disagree, 7 = strongly agree, and 4 = disagree as much as agree. The first four euthanasia/PAS items presented the statement in relation to a terminally ill cancer patient; the other two presented similar statements asking the patient to consider their preferences if they were terminally ill with cancer. "Don’t know" responses were also analyzed in combination with a score of 4 (neutral). An additional two questions asked patients about suicidal ideation, whether and how often had they considered ending their life in the previous month, with possible responses being never, rarely, sometimes, often, and all the time. For some of the analyses, this item was further categorized as never, rarely/sometimes, and often/all the time.

Survival
Survival status was determined by examining the medical records of the patients and the regional cancer registry. Duration of survival, calculated as time between the date of the interview and death, was available for 96 patients, who had all died by 1999. We considered survival to be a surrogate for disease severity. Although not necessarily associated with symptom burden, we felt it provided a measure of tumor spread and vital organ involvement, and proximity to death.

Sociodemographic Variables
Additional questions included information in relation to demographic variables, marital status, education, religion, strength of religious beliefs, financial expectations, and family responsibilities. Although income was included in the survey, a large number of patients did not want to answer this question and the variable was dropped from the analysis. Information about changes in financial status was elicited by asking patients if they were financially better, worse, or the same as the year before; we also asked for their financial expectations for the following year. Family responsibilities were elicited with four items, including responsibility for dependents, financial responsibility, and housework. For each of the items, patients were asked if they were solely responsible (score of 1), had shared responsibility (score of 0.5), or had no responsibility (score of 0). The final score ranged from 0 to 4.

Statistical Analysis
Analysis of the data showed a bimodal distribution for most of the euthanasia/PSA items, with the majority of patients either strongly agreeing or disagreeing (an example of this distribution was reported in our previous publication⁶). Consequently, we used nonparametric tests in addition to parametric testing to evaluate associations and differences in item responses as they related to patient characteristics and belief groups. Each survey item was initially analyzed individually. Because similar trends were observed, we also analyzed the total score of items 1 to 6. Differences between proportions were assessed by ² (nominal variables) and tau (ordinal variables) tests and Spearman correlation coefficients to assess bivariate associations. Differences in means among groups were assessed with one-way analysis of variance. The analyses included categorized continuous and ordinal variables to determine whether differences, which might be hidden when analyzing these variables as a continuum, occurred for patients with extreme views or with severe symptoms.

Multivariate analysis was performed to evaluate the association of symptomatic disease with euthanasia/PAS attitudes while adjusting for covariates. As indicated above, the responses to the euthanasia and PAS statements tended to be bimodal and, as a result, a linear regression model would be inappropriate. We therefore used a logistic regression model with a dichotomous dependent variable: agreement with euthanasia/PAS versus disagreement/neutral views. A patient was considered to agree with euthanasia or PAS if one or more of items 1 to 6 were scored 5 or higher. The remaining patients were judged to be neutral or to disagree. Independent variables included sociodemographic characteristics, symptom distress, religion and strength of religious beliefs, previous experience with cancer death in family, family responsibilities, and general beliefs about suffering and burden on families (items 7 to 9). The multivariate model initially included variables of interest (eg, symptoms), variables with statistical significance in the bivariate analyses, and potential confounders that we considered to be important irrespective of their statistical significance (eg, age and sex). A stepwise procedure was then used to determine the statistically significant variables for the final model.

Statistical significance was set at P = .05 (two-tailed tests). The statistical analysis was conducted using SAS Version 8 statistical software (SAS Institute, Inc, Cary, NC).

The study was approved by the human research ethics board at the participating institutions. All patients gave written consent before being interviewed.

	RESULTS

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One hundred patients, 42 men and 58 women, participated in the survey. Their mean age was 63.2 ± 12.2 years, and mean disease duration from diagnosis was 3.0 ± 4.1 years. No differences were observed between participants and nonparticipants with respect to sex (58% v 63% were women) or age (63.2 v 62.2 years old). Figure 1 shows the patients’ ratings for items 1 to 9. Items 1 to 4 elicited their attitudes in relation to a patient with cancer, and items 5 and 6 in relation to themselves. The responses tended to be polarized, with most individuals agreeing or disagreeing with the statements and only a few (< 10%) remaining neutral. Approximately 50% to 60% of patients agreed with each statement. The mean of the aggregated score of items 1 to 6 was 4.3 ± 2.1 (median, 4.7). Items 7, 8, and 9 related to patient beliefs about physical and emotional suffering of patients with cancer, and burden to their families. A large number of patients responded "don’t know" to the statements about suffering; 80% perceived that patients with cancer were a heavy burden on their families. For some of the analyses, "don’t know" and neutral responses were grouped together.

View larger version (31K): [in this window] [in a new window]   Fig 1. Responses to items 1 to 9: results are shown as percentage of patients who answered "don’t know," agreed with the statements (Likert responses 5 to 7), were neutral (Likert response 4), or disagreed (Likert responses 1 to 3).

View larger version (26K): [in this window] [in a new window]   Fig. 2. Mean symptom intensity measured with visual analog scales and level of support for euthanasia/PAS. *Statistically significant, P < .05.

When patients were asked how often they had considered ending their lives in the past month, 69 responded never, 15 rarely, 10 sometimes, five often, and one all the time. The correlations between frequency of suicidal ideation and symptoms were weak and did not reach statistical significance: the highest correlation was .18 (P = .07) for well-being (positive association between worse well-being and increased frequency of death thoughts). When the six patients who considered ending their lives often or all the time were analyzed together and compared with those who thought about it rarely or sometimes and those who never had these thoughts, statistically significant differences were observed for well-being, shortness of breath, anxiety, and depression (Fig 3). In general, patients who never, rarely, or sometimes considered death had similar scores, and the differences were determined by the six patients who considered death often. The frequency of suicidal ideation was also significantly associated with all the euthanasia/PAS items (r = .44 for the aggregated score) and beliefs about burden to families (r = .22), but not with beliefs about physical or emotional suffering in cancer patients (r = .15 for both). Men were more likely to have suicidal thoughts than women (43% v 22%, P = .03). Those who had contemplated suicide were more likely to be younger than those who never had these thoughts (59.5 v 64.8 years, P = .05), and more likely to have no religious beliefs. A trend was observed between survival and suicidal ideation: mean survival of those who never thought of ending their lives was 119 days; for those who thought about it rarely/sometimes, 97 days; and for the six patients who had suicidal thoughts often/all the time, 39 days. The difference did not reach statistical significance because of the small number of patients in the last group.

View larger version (25K): [in this window] [in a new window]   Fig 3. Mean symptom intensity measured with visual analog scales and suicidal ideation. *Statistically significant, P < .05.

	DISCUSSION

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In our survey, the strongest determinants of euthanasia and PAS attitudes were sociodemographic and cultural characteristics, including sex and religious beliefs. Religious attitudes have been shown in a number of studies to be a strong determinant of public, physician, and patient views.^6,8,13,25-28 In addition, in our study, the beliefs that patients had about the suffering and burden on families of cancer patients also had an impact on their views. The desire not to be a burden on others and loss of autonomy are among the most common reasons in requests for assisted suicide.^17,18 We found that patient general views about cancer patients being a heavy burden on their families and the strength of their religious beliefs were the only factors that remained significant in the multivariate analysis after controlling for symptoms and other characteristics. These attitudes were not related to the severity of their symptoms or a previous experience of a cancer death in their family. A large proportion of terminally ill patients have care needs that cannot be met by the medical system and rely on help from caregivers^29,30; patients with substantial needs are more likely to have considered euthanasia or PAS.³⁰ This burden on others seems to have substantial influence on their views.

Frequency of suicidal ideation was associated with support for euthanasia/PAS but was also related to a number of other disease characteristics. These included depression, anxiety, well-being, and dyspnea. The differences could be attributed mostly to a small percentage of patients (6%) who had persistent death thoughts; no major differences were observed between those who sometimes or never had such thoughts. Chochinov et al³¹ reported the results of an observational study measuring will to live in cancer patients receiving palliative care, and its relationship to symptom distress using the ESAS. The analysis identified exactly the same four determinants (and no others) found in our study. Emanuel et al⁸ also reported increased psychological distress in terminal patients who had considered or discussed euthanasia and PAS. We did not perform a multivariate analysis to evaluate the determinants of suicidal ideation because the strongest correlates seemed to be related to psychological distress, and it was unclear to us whether this distress resulted in increased frequency of death thoughts or weather in fact the opposite was true, and frequent suicidal ideation resulted in decreased well-being and increased distress. Limited uncontrolled observational data after PAS was legalized in Oregon in 1997, and anecdotal case series suggest that some patient interventions (in particular, referrals to multidisciplinary or hospice programs) and antidepressant drugs may result in some patients changing their desires about hastening death.^16,17,32

An intriguing finding was that survival seemed to be associated with suicidal ideation (but not with euthanasia/PAS views), although the difference did not reach statistical significance. The six patients who often thought about ending their lives died, on average, 39 days after the interview, compared with 119 days for those who never had suicidal thoughts. A number of hypothetical reasons could explain this finding: increased suicidal ideation as death approaches, a deleterious effect on survival from death thoughts, or perhaps active death choice with or without assistance. The one study examining changes in will to live over time showed wide fluctuations, but there was no clear evidence that it decreased as death approached.³¹

The patients in this study were treated in a palliative care program, which provides care for most patients with symptomatic terminal cancer in Edmonton. It is therefore representative of patients dying from cancer in this region. We do not know whether these findings are generalizable to patients without access to palliative care. Furthermore, patients in our study had universal health care that covered their prescription drugs. This may not be the case in other settings, for instance in the United States, where the cost of oral morphine is not covered by Medicare. The impact of these differences in health systems on patient views cannot be ascertained in our study. Our results, however, seem to be in agreement with the limited literature in other countries examining the determinants of patient support for euthanasia and assisted suicide. The survey used in our study was short and did not incorporate more comprehensive tools to better define depression, anxiety, and other psychosocial variables. In particular, a number of psychosocial constructs such as coping mechanisms, self-efficacy, self-worth, and perceived social support may be crucial to patients’ preferences. In this study, our objective was to evaluate the impact of symptom severity on patient views, and not so much the influence of psychological distress. Our findings suggest, nevertheless, that given the small influence of physical symptoms, psychological and spiritual issues may be more relevant to patient preferences and attitudes and deserve further attention in future studies.

In summary, attitudes about legalization of euthanasia and PAS of most terminally ill cancer patients are not generally determined by the severity of their symptoms. The strongest determinants in our study were psychosocial features such as sex and religious beliefs and general views about suffering in patients with cancer. These findings suggest that, for terminal patients, these attitudes are cultural and ethical constructs not influenced by the severity of their illness. A small number of patients with persistent suicidal thoughts showed increased psychological distress. Therapeutic or psychosocial interventions may modify the desire to hasten death in these patients, but it is unclear whether they may impact individual patient views about legalization of euthanasia and PAS.

	ACKNOWLEDGMENTS

 
Supported in part by the Health Services Research and Development Service of the Department of Veterans Affairs, Washington, DC.

We thank the terminally ill cancer patients who participated in the survey and gave their views despite the distressing nature of the subject. We also thank Robin Fainsinger and Mark Kuebeler.

	NOTES

 
The views expressed herein do not necessarily reflect those of the Department of Veterans Affairs.

	REFERENCES

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Submitted October 11, 2000; accepted January 3, 2002.

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This Article Abstract Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Suarez-Almazor, M. E. Articles by Bruera, E. Search for Related Content PubMed PubMed Citation Articles by Suarez-Almazor, M. E. Articles by Bruera, E.