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Introduction: What was the Purpose of this Project?

People with disabilities, as individuals, have featured largely in various aspects of the “right-to-die” debate. This has occurred on the national as well as international scene. University students puzzle over case examples featuring people with disabilities, such as the case of an individual, badly burned and blinded in an accident, who didn’t want any medical treatment whatsoever.^[2] American courts have been brimming with right-to-die cases, including those of Karen Ann Quinlan (a woman with a brain injury in a comatose state), Baby Doe (a baby born with Down’s Syndrome), and Baby Jane Doe (an infant with Spina Bifida.)^[3] The highly publicized cases of Dr. Kevorkian, who made his right-to-die services available to many persons with disabilities, have often been featured in American media. Canadians have also been involved in the right-to-die issue: Nancy B went to court to obtain the right to have her respirator disconnected; Sue Rodriguez appealed to the courts for the right to have a doctor assist her suicide; and Austin Bastable, a man with multiple sclerosis, advocated for the legalization of assisted suicide.

Historically, the 1970's were a time when concerns first became prominent regarding the right-to-die movement in North America. These were related to what was seen as a paternalism prevalent in the medical profession. Doctors were using extraordinary means to prolong life without adequate consultation with patients and their families. Grassroots people began to call for greater self-determination and autonomy in the dying process.

These concerns coincided with the development of the Independent Living philosophy, a movement organized by people with disabilities who were reacting not only to paternalism in the medical profession, but also were demanding greater self-determination and autonomy in deciding the courses of their own lives. While some citizens were using arguments about self-determination and autonomy in support of a good death, people with disabilities were seeking a good life, characterized by full participation and equality as citizens in their communities. During the 70's and 80's, organizations of people with disabilities worked to eliminate societal barriers that prevented their complete social, economic and civic interaction. The emphasis of these organizations continued to be on participation.

Events in the 1990's forced the disability rights movement in Canada to take on a new human rights issue, namely, the fundamental right of persons with disabilities to live and have the security of their person protected. The public’s responses to the cases of Nancy B., Sue Rodriguez, Austin Bastable and then Robert Latimer were shocking to members of the disability rights movement. Non-disabled people, some of them high profile and esteemed members of Canadian society, were championing disabled peoples’ right to die. Responses to the Latimer case demonstrated that some were even willing to excuse the murder of a child when that child was someone with a disability.

These reactions caused human rights activists within the disability rights movement to re-examine many assumptions about the place of people with disabilities in Canadian society. The alarming conclusion of this activity revealed that the advances made by disability rights organizations were less secure than had been previously assumed. People with disabilities realized that many within the non-disabled population still held the attitude that it was better to be dead than disabled.

Various organizations within the Canadian movement of people with disabilities began to concentrate on different aspects of fundamental human rights. These included the Council of Canadians with Disabilities (CCD), which focused on the Latimer case, assisted suicide and euthanasia. The DisAbled Women’s Network (DAWN) addressed mandatory sentencing as a response to the movement on the part of some Canadians to create a third category of murder, so-called “mercy killing.”. The Canadian Association for Community Living (ACL), People First, and organizations in the United States such as Not Dead Yet also began to work on this issue, as did Disabled People’s International.

Issues around Do Not Resuscitate (DNR) Order placement became very pertinent and timely in Manitoba in the fall of 1998 when the Manitoba League of Persons with Disabilities was approached with a request for support by Helen Sawatzky, whose husband, Andrew, was a resident of the Riverview Health Centre in Winnipeg. This need for support arose because the Sawatzkys were deeply concerned about a DNR Order which had been placed on Mr. Sawatzky’s medical chart. This placement had occurred without the knowledge or consent of either Mr. or Mrs. Sawatzky. The Manitoba League of Persons with Disabilities (MLPD) was a natural ally; individuals involved in that organization were familiar with doctors viewing death as an only option for persons with disabilities. Other MLPD members had gone to hospitals seeking intervention to restore them to health and they had been offered medical measures that would make them “feel comfortable” until death occurred.^[4] The MLPD played a role as intervener in the court case in support of the Sawatzkys, explaining how this case had an impact on the community of persons with disabilities. The decision of the court was to remove the DNR Order from Mr. Sawatzky’s chart.^[5] Once again, the matters of paternalism, self-determination and autonomy were at issue.

Following the Sawatzky case, the Manitoba League of Persons with Disabilities undertook research exploring legal and societal perspectives of the placement of Do Not Resuscitate (DNR) Orders and their impact on persons with disabilities. This research was presented to the MLPD membership at a Special Meeting in the Fall of 2000. At this meeting the concept of a “Will to Live” was suggested. A “Will to Live” would be for persons with disabilities, like Mr. Sawatzky, that could help specify to medical personnel the level of care being sought by such persons.

It is very important at this time to establish some definitions and distinctions. These are as follows:

	A Living Will is currently a legally binding document set out by a competent person who does not want medical treatment. If patients determine they do not want any further life-prolonging measures administered on their behalf, they have the right to refuse that treatment. This is also known as an “Advance Directive.”
	A “Will to Live” emphasizes the securing, rather than the refusing of treatment. Currently in Manitoba, a patient has the right to refuse treatment, but cannot demand it. It is the physician’s right, and the physician’s decision alone, to administer life-saving treatment.[6] A “WILL TO LIVE” IS NOT A LEGAL DOCUMENT!

The objective of a Living Will would be to call into dispute the possible assumption on the part of medical personnel that it is better to be dead than disabled. A “Will to Live” would give voice to the disabled person by giving expression to that individual’s appreciation of her/his own quality of life. It would articulate and reinforce that life, despite some limited capacities, is still worth living for the individuals in question.

Some people within the disability community in Manitoba have worked with lawyers to develop a “Will to Live” document of their own. But not all individuals with a disability who might want a “Will to Live” have the resources to develop one. In somewhat of an ironic fashion, the Manitoba League of Persons with Disabilities has taken a cue from the activity by the right-to-die movement in the 70's, which developed a grassroots “living will” template. The MLPD, much like those involved in the right-to-die movement, also wants to meet the needs of the grassroots community. However, the MLPD’s intent is for people with disabilities to have the option to express their own sense of autonomy and self-determination around end-of-life issues. It is for this reason that MLPD decided its membership needed access to a template for a “Will to Live.”

Objectives of this project are:

	A first draft of a “Will to Live” template which can be used by people with disabilities to assist their communication with medical personnel in order to avoid medical discrimination;
	National dissemination of this information through the Council of Canadians with Disabilities (CCD) network. This would include circulation of this information to other provincial and national organizations of people with disabilities;
	A greater awareness by people with disabilities at the grassroots level of medical discrimination. This would include providing information regarding self-empowerment methods in order to avoid the severest consequences of medical discrimination; and,
	A greater awareness of:
	1.	The MLPD/CCD’s work on this issue, and,
	2.	An understanding of how individuals can become personally involved in this work in order to advance public policy change which will reduce the prevalence of medical discrimination.

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2	Bart Guzalski and Carl Nelson, Value Conflicts in Health Care Delivery. Cambridge: 1982.
3	Peter G. Filene, In Arms of Others: A Cultural History of the RIght-to-Die in America. Chicago: Ivan R. Dee, 1998.
4	For a more detailed examination of this research, see previous report by the author Our Last Rights: Do Not Resuscitate (DNR) Orders and People with Disablities. Winnipeg: MLPD, 2000.
5	A description of the legal proceedings and ramifications can be found in Sherri Walsh's adjunct to the MLPD DNR Order Research Project, Do Not Resuscitate Orders and the Law in Canada - Patient's Rights. Winnipeg: MLPD, 2000.
6	As cited in the Dominion Law Reports (1997), 154 D.L.R. (4th) 409.

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The Will To Live Template Project - Contents