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Research Methdology

Research for the “Will to Live” Template Project consisted of several phases, which were categorized as follows:

3.1 Information Collection

Information relating to the concept of a “Will to Live” was sought out and collected throughout the duration of the project. This included contacting and consulting with the following:

	The Manitoba League of Persons with Disabilities (MLPD) membership;
	Other disability groups in Manitoba and Canada, including the Council of Canadians with Disabilities Human Rights Committee;
	Consumer-based Internet discussion groups such as the Bio-Ethics List Serv Group and the Disability Awareness List Serv Group;
	Legal articles and Judicial Decisions relating to patients’ rights and right-to-life issues;
	Print, radio, television and Internet media coverage of related issues; and,
	Research done in conjunction with the previous MLPD project, “Our Last Rights: Do Not Resuscitate (DNR) Orders and People with Disabilities.”

These individuals and groups were informed about the existence of the project. They were requested to share any information and/or concerns they had regarding the development of a “Will to Live,” patients’ rights and end-of-life issues. They were also encouraged to provide feedback concerning the content and the format of the project in order to make it accessible to a broad consumer base.

3.2 Document Preparation

Several documents were produced as a result of this project. These include:

	Ethical guidelines developed in conjunction with ethical research requirements as set out by the Ethics Committee of the Canadian Centre on Disability Studies (see Appendix 1) ;
	A consent form explaining the intent of the research and the rights of each participant in the project. Acquiring participants’ consent was mandatory, as established by the project’s ethical guidelines (see Appendix 2);
	A Workbook developed and distributed at each of the focus group sessions. (See Appendix 3) This document included:
	1.	Provincial legislation regarding patients’ rights.
	2.	Questions that helped participants identify their own areas of knowledge or lack of knowledge regarding health care policies. These questions also guided participants to articulate what courses of actions they desired in certain medical circumstances.
	3.	Questions that provided the project coordinator with information regarding consumers’ needs in formulating a “Will to Live” template.
	A mail-out survey was developed and sent to consumers who could not participate in the focus groups sessions.

3.3 Information Dispersal

People with disabilities, as individuals, have featured largely in various aspects of “right-to-die” and “right-to-live” debates. Because issues around patients’ rights, Do Not Resuscitate Order placement practices, and patient autonomy in critical medical decisions are surfacing provincially, nationally as well as internationally, it was determined that a disability rights perspective on all these issues and the project itself be publicized. Besides contacts and consultations listed prior in the Information Collection phase of the project, additional publicity endeavours included:

	Two project reports published in the Manitoba League of Persons with Disabilities Update newsletter;
	A 10 minute radio interview with CJAR, a local broadcaster in The Pas, Manitoba, a location for one of the focus groups;
	A presentation of the findings of “Our Last Rights: Do Not Resuscitate (DNR) Orders and Persons with Disabilities” at the Canadian National Bio-Ethics Conference in Winnipeg, October, 2001. Included as part of this presentation was a referral to the concept of a “Will to Live” template. It should be mentioned that this created considerable discussion amongst the session participants, the majority of whom were medical doctors;
	A presentation to medical students as part of a Rehabilitative Medicine class at the Faculty of Medicine, Health Sciences Centre, University of Manitoba;
	A letter to the editor published in the Winnipeg Free Press, February 20, 2002 written by the project coordinator in response to a previous article that disputed the rights of patients to have autonomy in medical decision making (See Appendix 4);
	An article describing the project and its finding in the Council of Canadians with Disabilities newsletter;
	A submission describing the project and its findings to Abilities magazine; and,
	A final report made available to the Council of Canadians with Disabilities and its affiliate provincial branches, to members of the Manitoba League of Persons with Disabilities, to the Canadian Centre on Disability Studies, and other individuals and groups who request it.

3.4 Consumer Input

Throughout the duration of the “Will to Live” Template Project, the membership of the Manitoba League of Persons with Disabilities was not only kept informed of the project’s progress, but also canvassed for their input regarding their concerns, questions, or any additional information they had pertinent to the research.

Focus groups were scheduled to meet:

	in The Pas on September 8, 2001;
	with the province-wide representatives of the MLPD Council on September 20, 2001;
	in Winnipeg on November 26, 2001; and,
	2 other locations in February, 2002.

Mail-out surveys were also included in a province-wide distribution of the MLPD newsletter and sent to interested consumers as per their request.

3.5 Project Advisory Committee

It is important to note that an Advisory Committee was established which guided the project coordinator throughout the duration of the project. Input from this group included advisement on research methodology, specific issues that arose within the framework of the project, and information presentation, including the writing of the final report. Appreciation and thanks are extended to members of the Advisory Committee, namely, Clare Simpson, April D’Aubin, Jim Derksen, Dr. Joseph Kaufert, and Carol Polson.


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The Will To Live Template Project - Contents