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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
J Pain Symptom Manage. Author manuscript; available in PMC 2010 August 1.
Published in final edited form as:
PMCID: PMC2782598
NIHMSID: NIHMS158291

Concerns About End-of-Life Care and Support for Euthanasia

Jane L. Givens, MD, MSCE and Susan L. Mitchell, MD, MPH

Abstract

Popular support for euthanasia is known to vary according to sociodemographic characteristics. However, little is known about whether support is associated with concerns regarding the emotional, physical, and economic burdens of end-of-life care. This study used data from the 1998 General Social Survey, a national survey of community-dwelling adults. The outcome variable assessed the respondents’ support for a doctor’s right to end life in the setting of terminal illness. Independent variables assessed the following concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of terminal illness; 3) concern about pain at the end of life; 4) worry that lack of money or insurance will result in second-class end-of-life care; and 5) belief that their religious community will be helpful at the end of life. Multivariable logistic regression estimated the independent effect of these concerns on support for euthanasia, adjusting for sociodemographic characteristics. Of 786 respondents, 70.6% approved of euthanasia in the setting of terminal illness. In adjusted analyses, respondents with concerns about the emotional toll of decision making on family members, economic burden, and poor health care because of lack of insurance were significantly more likely to support euthanasia. Respondents with faith in the helpfulness of their religious community were less likely to support euthanasia. In conclusion, emotional and economic concerns about end-of-life care were associated with support for the right to euthanasia. Future work can evaluate whether alleviating these concerns may reduce the perceived desire for euthanasia by patients near the end of life.

Keywords: Euthanasia, terminal care, end of life

Introduction

Popular support for the right to euthanasia in the setting of terminal illness has increased in the past decades.14 Earlier works demonstrate that this support varies with sociodemographic characteristics and religious beliefs in such a way that support for euthanasia is more common among adults who are relatively younger, male, white, have higher education, and lower religiosity.1,46 Although these are valuable observations, there is little research on whether potentially modifiable concerns regarding end-of-life care are also associated with an individual’s support for euthanasia.

Although societal debate continues regarding the ethical and legal implications of physician-assisted suicide and euthanasia, medical providers encounter terminally ill patients who may wish to end their lives. According to surveys of practicing physicians, many would consider helping a terminally ill patient commit suicide in certain situations.79 An earlier work assessing the views of community-dwelling adults regarding end-of-life care reveals that 19% of Americans state that they would ask a physician to prescribe a lethal drug if they were terminally ill and in pain.4 Although perceived interest in euthanasia or physician-assisted suicide may stem from immediate patient-specific concerns, such as pain and depression,10,11 it also may reflect the patient’s wish to avoid other emotional, physical, and economic burdens near the end of life. Political support for the right to euthanasia may similarly be associated with specific concerns about the burdens at the end of life.

For these reasons, we chose to use a national sample of community-dwelling adults to measure potential associations between support for euthanasia and five end-of-life concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of end of life care; 3) concern about pain at the end-of-life; 4) worry that lack of money or insurance will result in second-class health care; and 5) belief that their religious community will be helpful at the end of life.

Methods

Participants

These analyses use data collected in the 1998 General Social Survey (GSS), administered by the National Opinion Research Center of the University of Chicago.12 The GSS is a nearly annual survey of U.S. households, using a random sample of English-speaking, community-dwelling adults. Face-to-face interviews were conducted in the participant’s home. The GSS contains core questions and topics of special interest, which are administered to a subset of the larger sample. In 1998, questions regarding a range of end-of-life issues were included. (More recent iterations of the survey did not include these questions.) The response rate in 1998 was over 75%.13 In 1998, the GSS was administered in two samples (1998a and 1998b). Only the 1998b sample contained the euthanasia and end-of-life questions, which were administered to randomly selected participants. We limited our analytic data set to those who answered both the questions related to euthanasia and all five end-of-life questions, resulting in an analytic sample of 786 persons.

Outcome

The outcome variable was the response to the question “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient’s life by some painless means if the patient and family request it?” The reported response options were “yes” or “no.”

End-of-Life Concerns

We hypothesized that approval for euthanasia in the setting of terminal illness would vary with attitudes representing potential burdens one might face at the end of life. Specifically, these questions were phrased as follows: “Now, I would like to talk about concerns you may have when considering what may happen at the end of your life. Please tell me how much you agree or disagree with each of these statements: 1) I worry about the emotional burden that my family might face making decisions for me at the end of life; 2) I worry about the economic burden that a terminal illness might cause my family; 3) I believe that the doctors will be able to control my pain; 4) I worry that if I run out of money or health insurance, I will get second class health care; 5) My religious community would be very helpful if I were terminally ill.” Responses to these questions were measured on a 5-point Likert scale, from strongly agree to strongly disagree. For these analyses, we created dichotomous variables combining strongly agree and agree vs. neither agree nor disagree, disagree, and strongly disagree.

Sociodemographic Variables

Sociodemographic characteristics previously shown to be associated with attitudes toward euthanasia were analyzed. Sociodemographic variables were categorized as follows: race (white vs. other); age (<35, 35–64, 65 years or more); marital status (married vs. not married [widowed, divorced, separated or never married]); income (<$25,000 vs. ≥$25,000); education (less than high school, high school, high school or higher); and attendance at religious services (never, at least once a year but less than one time a month, one to three times a month, more than three times a month). Finally, a question asking about prior experience with terminal illness was included, phrased as follows: “Have you or any close friend or family members been faced with a terminal or life-threatening illness?” Reported response options were “yes” or “no.”

Statistical Analysis

Frequencies were used to describe the study sample and responses to euthanasia and the end-of-life questions. Comparisons between participant characteristics and responses were made using tests of proportions. Logistic regression was used to measure the unadjusted associations between each sociodemographic variable and support for euthanasia, as well as between each end-of-life question and support for euthanasia. Multivariable logistic regression models were used to determine the independent association between each end-of-life question and support for euthanasia, after adjusting for sociodemographic variables associated with the outcome in unadjusted analyses at the P < 0.1 level. Adjusted odds ratios (AORs) with 95% confidence intervals (CIs) and two-tailed P-values were generated from theses analyses. Sampling weights and robust standard errors were included in all regression analyses to account for the probability of sampling within households. All statistical analyses were performed using STATA SE version 10.0 (STATA Corporation, College Station, TX, USA). This study received an exemption from the University of Pennsylvania Institutional Review Board.

Results

Characteristics of the study population, the frequency of support for euthanasia, and the unadjusted associations with support are displayed in Table 1. Most respondents were female and white, and had at least a high school education. Most of the respondents approved of euthanasia in the setting of terminal illness (70.6%). Significantly higher levels of support were found among respondents who were white, male, younger, and who attended religious services less frequently. Table 2 presents the frequency of responses to each of the five end-of-life questions according to participant characteristics.

Table 1
Characteristics of Study Population, Percent, and Unadjusted Associations with Support for Euthanasia (n = 786)
Table 2
Response to End-of-Life Questions by Sociodemographic Characteristics (n = 786)

Most of the respondents endorsed concerns regarding emotional and economic aspects of end-of-life care, and over half felt that their religious community would be helpful in the setting of terminal illness (Table 3). Results from separate multivariable logistic regression models estimating associations between each of the five end-of-life concerns and support for euthanasia are presented in Table 3. All models were adjusted for race, gender, age, and attendance at religious services. In the adjusted analyses, respondents with concerns about the emotional toll of decision making on family members (AOR: 1.65, 95% CI: 1.14–2.39), economic burden (AOR: 1.60, 95% CI: 1.10–2.31), and concern about insufficient health care resulting from lack of health insurance (AOR: 1.48, 95% CI: 1.04–2.13) were significantly more likely to support euthanasia. Respondents with a belief in the helpfulness of their own religious community were less likely to support euthanasia (AOR: 0.46, 95% CI: 0.30–0.72). Concern about pain control at the end of life was not significantly associated with support for euthanasia.

Table 3
Frequency of Concerns Regarding End-of-Life Care and Their Unadjusted and Adjusted Association with Support for Euthanasia

Discussion

This study used data from a 1998 national U.S. sample of community-dwelling adults to explore the association between concerns about end-of-life care and belief in the right to euthanasia in the setting of terminal illness. Previous national studies have identified socio-demographic predictors of support for euthanasia but have not defined attitudes or concerns that may influence such support. We found that individuals with concerns about the emotional and economic burden of end-of-life care and worries relating to insufficient health care because of lack of health insurance were more likely to support the right to euthanasia, and that those with a belief in the helpfulness of their religious community at the end of life were less likely to do so. These associations remained significant after adjusting for sociodemographic characteristics.

Popular support for the right to and legalization of euthanasia is often discussed in relation to societal endorsement of the ethical principle of autonomy.14,15 Some have argued that a patient’s right to self-determination regarding death is necessary to ensure a balance between the increasing availability and use of life-prolonging technology in modern medicine, and a desire for a more holistic approach to end-of-life care.15,16 In The Netherlands, where euthanasia is legal, a survey of the public found that acceptance of euthanasia in a hypothetical scenario was, in part, related to considering it important to have a dignified death and to concerns about becoming dependent on others or a burden to relatives.17 These results can be interpreted as reflecting a desire to have more control over one’s dying experience, and lessen the involvement of others, which are in concert with principles of self-determination. Our results support this notion, as participants who were concerned about the emotional burden to others regarding medical decisions at the end-of-life were more likely to support euthanasia.

We also found that concerns regarding economic burdens and fear of receiving poor-quality health care because of lack of insurance were prominent and were also associated with support for euthanasia. These results seem to reflect specific worries about access to affordable end-of-life care. As such, their association with support for euthanasia may represent a desire for a comfortable death coupled with the concern over the possibility of facing a terminal condition without adequate medical care. Given the costs associated with providing high-quality end-of-life care (e.g., nursing, personal care, medications), such concerns are valid,18 particularly for terminally ill patients with inadequate health insurance, poor informal supports, and those ineligible for or with limited access to the Medicare hospice benefit.

Although our study examined the views of community-dwelling adults, our results are comparable to prior studies reporting the opinions of terminally ill patients regarding euthanasia. Overall support for the right to euthanasia was 70.6% in our study, which is similar to (70%)19 or greater (60%)20 than the level of such support among patients with terminal conditions. The most common concerns among terminally ill patients associated with an interest in euthanasia relate to having adequate personal care and pain relief.1820 Similarly, a study of the family members of patients who requested physician-assisted death (PAD) in Oregon (where this practice is legal under the Death with Dignity Act of 1997) revealed that concerns over loss of independence, quality of life, and pain were felt to be the main reasons PAD was requested.21 In our sample of community-dwelling adults, most (62%) believed that doctors would be able to control pain at the end of life, and surprisingly, this belief was not associated with interest in the right to euthanasia. Our findings regarding the negative effect of belief in religious community on support for euthanasia are also similar to those found among terminally ill patients.19

The results of this study should be interpreted in light of certain strengths and limitations. The strengths of the study include the use of a national survey with a good response rate, suggesting that our results are generalizable. Limitations include that the question regarding euthanasia in this survey uses a hypothetical scenario, and does not necessarily reflect a person’s own behavior. It may not be worded explicitly enough to clearly distinguish between assisted suicide and euthanasia. The questions regarding end-of-life concerns are separated from a clinical context, and it may be difficult for participants to project themselves into the mindset of end-of-life care. However, information on the participants’ prior experience with terminal illness was included in our analysis. Greater levels of depressive symptoms, even among non-terminally ill persons, have been shown to be associated with higher acceptance of euthanasia in hypothetical scenarios.22 This study lacked any information about the participants’ depressive symptoms, which may have confounded our results. In addition, the variable religious attendance may not be an accurate measure of an individual’s religiosity. Lastly, the data are a decade old, and recent advances in palliative and hospice care may influence more current measures of support for euthanasia.

In summary, we found that, in a national sample of community-dwelling adults, most of the participants supported the right to euthanasia in the setting of terminal illness and many also had concerns regarding the emotional and economic aspects of end-of-life care. We found an association between end-of-life concerns and belief in the right of doctors to end life in the setting of terminal illness, which may reflect political support for euthanasia. Future research may elucidate whether our findings offer guidance on how to relieve worries about end-of-life care that may underlie an expressed desire for euthanasia among individuals actually living with a terminal illness. Interventions for patients and families that aim to reduce the financial worries and emotional stress of medical decision making near the end of life, as well as efforts to strengthen support from a patient’s religious community, if relevant to the individual, may relieve some of the burden of the dying experience, and may be found to potentially have an impact on requests for euthanasia.

Footnotes

Presented in abstract form at the Society of General Internal Medicine National Meeting, May 2005, New Orleans, LA, USA.

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