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COPYRIGHT 2005 Pro-Ed
A questionnaire on views regarding legalized assisted suicide was administered to 29 individuals with disabilities (12 participants with various disabilities; 17 participants with multiple sclerosis) before and after their exposure to a "pro" versus "con" informational presentation focusing on disability and assisted suicide. Results indicated that participants who expressed neutrality before the presentation were more likely than participants who had a predetermined position (either opposing or supporting legalization) to change their responses from pretest to posttest. Changes in views, when they occurred, tended toward opposition to legalized assisted suicide. Following the presentations, participants were fairly evenly divided in their endorsement versus opposition to legalized assisted suicide for terminally ill people. Most were opposed, however, to the legalization of assisted suicide for persons with incurable disabilities. Race/ethnicity and gender of participant were important factors, in that women, African Americans, and Latinos were least likely to support assisted suicide. The majority of participants indicated that legalized assisted suicide could lead to involuntary deaths and that safeguards would not prevent abuse. It was concluded that balanced disability-relevant information had a mild effect on attitudes in this study, and that differing levels of knowledge may account for some of the differences in views held by disabled people regarding legalized assisted suicide.
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The question of whether to legalize assisted suicide has provoked widespread impassioned debate for almost 2 decades. Although the topic draws considerable media coverage, the information conveyed is rarely comprehensive or representative of diverse voices. Particularly underrepresented has been a disability perspective. Much of the coverage implies that only a narrow group of stakeholders, namely, persons with advanced terminal illnesses, would be affected by legalizing assisted suicide. Yet, leading proponents of assisted dying have included persons with nonterminal disabilities and irreversible chronic health conditions in the category of individuals entitled to legalized assisted suicide.
For example, in his bestselling book, Final Exit, Derek Humphry, cofounder of the Hemlock Society, expressed hope for a "more tolerant attitude" toward "justified suicide by a handicapped person" (1991, p. 62). An article in the New England Journal of Medicine argued for the inclusion of conditions such as multiple sclerosis in physician-assisted dying (Quill, Cassel, & Meier, 1992). Many proposed statutes for legalizing assisted suicide, such as the frequently cited Harvard Model Act (Baron et al., 1996), explicitly include persons with irreversible but nonterminal conditions. Furthermore, where assisted suicide has been practiced, people with disabilities have been recipients. Cases linked to Jack Kevorkian, for example, involved nonterminal disabilities such as spinal cord quadriplegia, multiple sclerosis, pain disorders, and chronic fatigue syndrome (Cheyfitz, 1997). In the Netherlands, where physicians have practiced assisted suicide and active euthanasia for years, government reports indicate that persons with both physical and psychiatric disabilities have been helped to die (Hendin, 1997).
The inclusion of people with disabilities as affected parties in the assisted suicide debate raises several critical questions:
* What are the views of people with disabilities regarding legalized assisted suicide?
* If people with disabilities are stakeholders in the matter of legalized assisted suicide, and if that fact is rarely explicitly acknowledged in media coverage or public debate, are they receiving adequate disability-relevant information about the issue?
* How might their views change in response to receiving more information about the topic, focusing explicitly on its relevance for people with disabilities?
Previous Research
Questions of this nature have been inadequately addressed in the research literature. Public opinion surveys on assisted suicide generally do not acknowledge people with disabilities as a distinct demographic group. A notable exception is the Harris Poll on assisted suicide, which has reported results for respondents with disabilities in 1994, 1997, and 2001. According to these surveys, opinions of respondents with disabilities mirror those of the general public, with two thirds endorsing legalized assisted suicide, one third opposing it. Unfortunately, the Harris telephone polls are limited by a number of methodological problems that raise questions about their accurate representation of Americans with disabilities. According to information from Humphrey Taylor, chairman of the Harris Poll (personal communication, July 11, 2002), the survey samples exclude deaf people (because no TTYs [teletypewriters] or telephone relay access were used), individuals in nursing homes or other institutions, persons too poor to have a telephone, people with speech disabilities that limit conversation via telephone, and individuals with physical or cognitive disabilities who generally do not answer the telephone when a surveyor calls because others in their household assume this role for them. Regrettably, such individuals, whose opinions are frequently undocumented, may be among those most affected by changes in assisted suicide policy. Furthermore, the 1994 Harris Poll, which Batavia (1997) and others have cited as primary evidence of the disability community's support of legalized assisted suicide, conflates the responses of individuals with disabilities with the responses of individuals without disabilities who are living with individuals with disabilities. Because this poll lacked a follow-up question to distinguish respondents with disabilities from other members of their households, Taylor has concluded that it is "not correct to report data on people with disabilities from the 1994 poll" (personal communication, July 11, 2002).
In 1999, the disability magazine New Mobility published results of a national survey on assisted suicide (Corbet, 1999). Of the responses from 218 people with disabilities, 53% indicated that they would support assisted suicide if satisfactory safeguards were established, while 42% indicated opposition. When asked whether satisfactory safeguards can be established, however, more than half (54%) said no. When asked whether they feared that assisted suicide would be selectively applied to people with disabilities, the majority (64%) said yes. Of respondents supporting assisted suicide, 37% said yes when asked whether they feared criticism from other people with disabilities if they expressed their views. Although all respondents self-identified as disabled, the survey was conducted exclusively through e-mail, thereby excluding many people with disabilities who lack access to online communication (Corbet, 1999).
A recent qualitative study addressed some of the sample problems noted in the previous surveys. Because it is the only published research we could find that systematically documented views toward legalized assisted suicide of people with various nonterminal disabilities, it will be discussed in detail. Fadem, Minkler, and associates (Fadem, Perry, & Minkler, 2001; Fadem, Blum, Moore, & Rogers, 2002; Fadem et al., 2003; Minkler et al., 2002) conducted in-person interviews with 45 individuals with physical disabilities in the San Francisco, California, area. A Community Advisory Group, composed of six persons with physical disabilities from diverse backgrounds, helped the research team design questions, recruit participants, analyze results, and disseminate findings. According to the researchers, their strategy was to develop not a random or representative sample but one that reflected diversity in terms of disability type (within the category...
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