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4.3 Voices in Manitoba: What We Learned from Focus Groups and Survey Participants

“He should have been allowed to live.” So proclaimed a headline in the Winnipeg Free Press on December 21, 2001²⁰. Alexandra Paul, medical reporter for the paper, was with Rudy Bachewich when he died in hospital. She had been invited by his family to report on the decision to disconnect Rudy’s life support. The 70 year old, who had lung cancer, had been using a respirator until the hospital decided that his oxygen flow should be cut off. His family complained bitterly that the decision to withdraw life support was not theirs, and had spent 3 days fighting what was basically a death sentence. Mr. Bachewich’s wife stated, “If you bluntly ask him if he wants to die, he gets a horrified look on his face. I know he doesn’t want to go...the doctors say it’s a medical decision and they have been forcing us for the last three days now.” His daughter, Brenda, adds, “This isn’t humane. We’re saying if you’ve only got a week left, that’s for God to decide, not the doctors.” Yet again, the law as it stands now in Manitoba, supports the hospital’s decision. Doctors have the legal right to stop medical treatment.

It’s interesting to note that this drama unfolded just after the focus group sessions for this project drew to a close. Twenty seven people from across Manitoba participated in focus groups or as respondents to a mail-out information package and survey dealing with the topic of patients’ rights in Manitoba and the possibility for developing a “Will to Live” template.

The Focus groups which met occurred:

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

Two additional focus groups were scheduled, but these were never held. One did not occur because of logistical reasons, and the other because of a strong difference of opinions on the relevancy of the topic within an MLPD regional branch membership.

The experience within that branch of the MLPD, was, in some ways, typical of what is happening in many parts of Manitoba and even Canada. If one were to ask any group from the general population in Manitoba if they wanted to discuss health care policies, let alone their own vulnerability in the face of their impending death, one would probably encounter a great deal of resistance. Why should this not be the same for members of the disability community? Death is a difficult topic to think about. How many people have pondered what they would want to have happen if they should find themselves in critical medical circumstances? How many people have taken the time to compose a “living will”? Certainly other organizations who deal with end-of-life issues, such as those who are involved with organ donations, etc., indicate that most people do not want to think about their deaths, and the medical consequences around their deaths.

The twenty seven persons who did become involved in discussing this issue provided some very important information which has helped the MLPD identify:

1.	What should be included in a “Will to Live” template; and,
2.	The need for further public education for persons with disabilities who might be particularly vulnerable to medical discrimination.

There were areas of unanimous agreement concerning some of the questions raised in the focus group discussions/mail-out survey. (For an outline of these questions and accompanying material, see Appendix 3)

	100% of the participants were interested in having a say in determining the kind of care they would want to have if they were in a critical medical situation that might be life threatening;
	100% wanted to be informed of the kind of treatment they would receive;
	100% wanted to be included in any discussion regarding their treatment; 21
	100% wanted someone to represent their wishes if they were incapable of expressing these on their own. This arrangement was explained as having a “patient proxy.”
	94% wanted their wishes for treatment to carry the same weight in decision-making as those of their physicians;
	100% wanted the power of having the final say in any course of treatment;
	100% wanted their doctor or health care facility to obtain the permission of themselves or their patient proxy regarding any medical treatment decisions;
	100% indicated that they did not have adequate knowledge concerning patient control of end-of-life decisions;
	100% did not know the policy of their own doctor concerning DNR Order placement or other areas of patients’ rights;
	100% did not know of patients’ rights policies in their hospitals or their Regional Health Authorities;
	100% did not know the policy of the Manitoba Medical Association;
	100% did not know the law concerning patients rights in Manitoba or in Canada;
	56% thought that having a pre-existing disability prior to a critical medical condition would have an impact on the kind of treatment they would receive;
	90% indicated that having a disability made a difference to their doctors, their hospitals, and their Regional Health Authorities regarding decisions made about their treatment; and
	55% indicated that they had experienced discrimination in terms of what they believed to be appropriate medical care because their quality of life was underestimated due to their disability.

Comments brought up for discussion or written in the surveys reflect several common areas of concern amongst participants.

Firstly, participants expressed a sense of reticence to challenge decisions or policies made by physicians, health care institutions or Regional Health Authorities. We heard people’s resignation in stating that they didn’t think they had a chance “challenging the system.” Some were not even aware that a patient had the right to question a doctor’s decision.

There was also a loss of confidence in the way health care is delivered in Manitoba. Participants stated their experiences of receiving medical care were predominantly negative.

Problem areas included:

	Dealing with doctors patients have never met before in hospitals, and having to explain their situations and desires for self-autonomy to everyone new that walked into their rooms;
	Visiting walk-in clinics with a rotating physician staff;
	The high turnover of doctors who move from one region or health care facility to another;
	Uncaring medical personnel who are highly insensitive and uninformed on living independently with disabilities;
	It was felt that the Hippocratic Oath was not practiced, and that economic pressures were determining the course of health care;
	There should be more information when patients’ lives are at stake;
	There should be immediate crisis response - not many hours after the fact. This included addressing the issue of long waiting lists for diagnoses and treatment;
	Intensive Care Units should have more staff, less rushed and overworked. These staff should also have better training in dealing with people who live with disabilities.

Participants had varying experiences when it came to the communication between themselves and their physicians regarding information about their health status.

	Some were very pleased with the level and frequency of information communicated; others felt they had not been fully informed about treatment options or the risks involved;
	Some felt too intimidated to ask questions;
	Some expressed concerns that they had to repeatedly prod medical personnel for information while in hospital. Other questions regarding information issues included whether or not patients had the legal right to a 2nd medical opinion regarding treatment; whether stating the need for treatment in a living will/advance directive guaranteed that treatment; and clarification on the term “reasonable treatment;”
	Communication difficulties were certainly prevalent among deaf and nonverbal participants. There was emphatic concern that sign language interpreters be available in any situation where medical information is being conveyed, so that patients do not have to rely on family and friends in order to communicate with their doctors. It was also suggested that additional training for medical personnel occur so that they would have a more adequate knowledge base in dealing with deaf people;
	Frequently expressed were comments stating that participants wanted to be fully informed of both treatment possibilities and any risks entailed in order to make decisions that could mean the difference between life and death;
	There was a lack of faith in the implementation of current health care policies - with suspicions that often these policies never “trickled down” to the level of patient care. These policies were seen as not always, or even generally, carried out with actions;
	Some expressed that it seemed the Regional Health Authorities were “crumbling” before consumers even knew what their policies were.

There were extensive concerns about the possibility of being subject to medical discrimination based on the fact that a patient had a pre-existing disability prior to a critical medical situation. Specifically, participants voiced the following:

	Being in a state of unconsciousness and not being able to self-advocate;
	Not having a “right to life” if treatment is denied;
	Doctors’ attitudes (and therefore their decision-making) are products of the prevailing social attitudes, and these attitudes devalue the lives of persons with disabilities. Social perceptions influence the making of policies;
	Personal experiences where participants out-lived doctors’ health predictions which were based on incorrect medical assumptions about their disability;
	Participants’ quality of life is underestimated because of a doctor’s understanding of living with disabilities;
	Potentially life-saving treatment withheld because physicians perceived it might not be effective;
	Some experienced discrimination based on age as well as disability. Others raised specific questions about the rights of children with disabilities who might be in critical medical situations;
	Strongly expressed was the conviction that decisions of this magnitude were not only medical, but also moral ones.

Participants in some focus groups engaged in supportive advice-sharing as peers with common experiences, common problems, and some unique solutions. The most prominent theme that arose out of this part of the discussion was that persons with disabilities needed to learn individual advocacy skills in order to assert what was most important to them when learning about, and participating in, their own treatment decisions.

Participants also offered suggestions for ways of improving the current health care system. These were as follows:

	As mentioned previously, providing information to medical personnel regarding living with a disability could be a part of their training;
	The Manitoba Medical Association could have brochures in doctors’ offices stating their policies. This could help patients make more informed choices;
	Seniors’ groups such as the Manitoba Society of Seniors should be included in further discussion on patients’ rights and avoiding medical discrimination;
	There should be clarification of such terms as “reasonable treatment.” If a legal re-defining of this and other terms occur, consumers should be present at these discussions;
	The Manitoba League of Persons with Disabilities should monitor any further incidences of medical discrimination and continue to work to prevent such occurrences;
	Better training and knowledge in working with deaf, hard-of-hearing, and nonverbal patients with specific communication needs.

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20	Alexandra Paul. "He should have been allowed to live." Winnipeg Free Press. December 21, 2001.
21	Note the distinction between "being informed" and "being included in the discussion."

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The Will To Live Template Project - Contents