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7.3 Appendix 3: Worksheet for Focus Group Participants

Introduction

The Manitoba League of Person with Disabilities (MLPD) is once again undertaking a research project that deals with end-of-life issues, patients’ rights, & the impacts these have on persons with disabilities. The MLPD is doing this in conjunction with the Council of Canadians with Disabilities (CCD), and this project is funded by the Canadian Centre on Disability Studies.

Some of you may have participated in another MLPD event, the “Our Last Rights” workshop (Oct., 2000) based on our research project concerning Do Not Resuscitate (DNR) Orders. At that time a recommendation was put forward for the MLPD to explore the concept of a “Will to Live” with its membership.

A “Will to Live” differs from the intent of most living wills & other health care directives. A “Will to Live” indicates a patient wants medical treatment in a health crisis situation. Most living wills/healthcare directives state a patient ‘s wishes to not receive medical treatment. Currently the policy of the Mb. College of Physicians & Surgeons states that a patient has the right to refuse treatment, but not to demand treatment.

So, what does this have to do with you?

We want to consult with people at the consumer level to learn about concerns regarding medical treatment in potential end-of-life situations. More specifically, we want to develop a template that could assist people in creating their own “Will to Live” document. We’ll examine the legal, medical & ethical concerns involved in this issue. Critically important to the project is the opportunity for consumer concerns to be heard. We are holding 3 focus groups to discuss the “Will to Live” template development.

Thank you for taking the time and energy to be a part of this discussion. It is the intent of the MLPD to make this discussion beneficial not only to the organization as it researches the possibility of developing a “Will to Live” template, but also to you as participants as you explore ways of being empowered, even in life-threatening situations.

PATIENTS’ RIGHTS POLICIES

Manitoba Health

Bill 73, the Health Care Directives Act, was proclaimed in force July 26, 1993. This Act gives Manitobans the right to accept or refuse medical treatment at any time. Competent persons may express their wishes regarding the amount and type of health care and treatment they wish to receive in the event they are unable to speak for themselves. The Act also gives the right to appoint another person with the power to make medical decisions on their behalf if they are unable to speak for themselves.

The following information was issued from the Minister of Health’s Office in January 2000 upon an inquiry about the Ministry’s position on DNR (Do Not Resuscitate) Orders.

“A DNR Order, a decision to forego CPR, does not limit in any way the implementation of any other medically appropriate treatments or procedures. The patient’s physician writes DNR Orders on a patient’s medical chart. An order to reverse a DNR Order must also be written on the patient’s medical chart by the patient’s physician.”

The Minister’s Office also acknowledged the discussion which took place at a national level regarding DNR Orders and their placement practices. A joint statement was formulated by the Canadian Medical Association (CMA) Board of Directors, the Canadian Healthcare Association, the Canadian Nurses Association and the Catholic Health Association of Canada, which was developed in conjunction with the Canadian Bar Association. This statement encouraged medical facilities to have interdisciplinary committees which could develop policies, programs for policy implementation and conflict resolution mechanisms pertaining to DNR Orders. It should be noted that according to the statement issued from the Minister’s Office, “all major facilities in Manitoba have such policies in place.”³¹

Also of note in the Joint Statement is a recommendation for institutions to have reviews of DNR Orders at regular intervals. The conditions for the implementation of these reviews include the request of patients or patient proxies. This review could occur if there is a substantial improvement in a patient’s condition and if the patient is to undergo a surgical procedure or is transferred to intensive care.³²

College of Physicians and Surgeons of Manitoba

The following is the text of a document published by the College of Physicians and Surgeons of Manitoba in February 1998. This statement was made following the decision rendered by the Manitoba Court of Appeal regarding DNR Orders in 1997.

“The decision to resuscitate must comply with the accepted standard of the medical profession. The physician must determine and document the relevant criteria accepted by the profession for the decision not to implement or discontinue therapy. The responsibility to consider the family in issues relative to patient care becomes more relevant when the patient cannot contribute. In a situation involving withdrawal or non-provision of treatment, clear communication becomes very important, even though the issue of consent is not relevant”33

The College recommends the following in its Guidelines³⁴:

“All facilities are expected to have policies regarding DNR and supportive treatment orders. Policy makers should determine how controversial concepts applied to CPR should be interpreted into the policy, in light of the facility’s mission, the values of the community it serves, and ethical and legal developments. All members of the medical staff should be familiar with the policy.” 35

The College recommends that if the person for whom resuscitation is being considered is deemed incompetent, decisions made on his/her behalf are based on the following principles:

	the treatment decisions must be based on the wishes of the person if they are known;
	when the person’s wishes are not known, treatment decisions must be based on the person’s best interests determined by
	i)	the diagnosis/prognosis;
	ii)	discussions with the partners and close family members;
	iii)	the person’s known values and preferences;
	iv)	aspects of the person’s culture/religion that would impact on a treatment decision. 36

It is important to note that although informed consent from the patient or patient surrogate should be clearly understood and communicated, it is not mandatory. The expressed opinions of the patient, family and other care givers regarding DNR Orders are to be considered; but this is only a recommendation and not a prerequisite established by the College.

DISCUSSION QUESTIONS

1.	Are you interested in having a say in determining the kind of care you would want if you were to be in a critical medical situation that might be life-threatening?
	Would you like to be informed of the kind of treatment you will receive?
	A.	Would you like to be included in any discussion regarding your treatment?
		Would you want someone to represent your wishes if you were incapable of expressing them yourself? This arrangement is sometimes known as having a “patient proxy.”
	B.	Would you want your wishes for the kind of treatment you want to carry the same weight in the decision-making process as that of your physician?
	C.	Would you want the power of having the final say in any course of treatment?
	D.	Do you want your doctor/health care facility to obtain the permission of yourself or your patient proxy regarding any medical treatment decisions?
2.	What is your level of knowledge concerning patient control of end-of-life decisions?
	A.	What is the policy of your doctor?
	B.	What is the policy of your hospital?
	C.	What is the policy of your Regional Health Authority? (RHA)
	D.	What is the policy of the Manitoba Medical Association?
	E.	What is the law concerning patient rights in Manitoba?
	F.	In Canada?
3.	Do you think that having a pre-existing disability prior to a critical medical situation would have an impact on the kind of treatment you would receive?
	A.	Would already having a disability make a difference to your doctor regarding decisions made about your treatment?
	B.	Would already having a disability make a difference to your hospital administration regarding decisions made about your treatment?
	C.	Would already having a disability make a difference to your RHA regarding decisions made about your treatment?
	D.	Have you experienced a discrimination in terms of what you believed to be appropriate medical care because you felt someone underestimated your quality of life because of your disability? Would you be willing to share the particulars of that experience?
4.	What are the main concerns you have regarding potential end-of-life &/or critical medical situations?
	A.	What would you like to have happen in critical medical situations?
	B.	What changes, if any, to current practices would you like like to see occur?
5.	If a document such as a “Will to Live” template were developed, what would you see as being key points to be included in it? (Possible components of a “Will to Live” template could include):
	Quality of Life Statements
	A.	a description of the level of satisfaction you have living with disabilities.
	B.	a description of what you think is critical to achieve your quality of life.
	C.	a description of what is important to you while undergoing medical care (i.e. being treated with dignity, etc.).
	Your need for protection of your rights as a patient.
	A description of what you would want to have happen in critical medical circumstances; this could include a list of medical particulars regarding the obtaining or stopping of treatment.
	A statement of agreement between you & your doctor.
	Instructions for your patient proxy.
	Other items.

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31	Statement issued from the Minister of Health's Office, January 2000.
32	These conditions, it is assumed, would be determined by the attending physician or healthcare team. Absent from the Joint Statement is any mention of a DNR Order review that would be the result of a conflict between a physician and a patient / patient surrogate.
33	"Consent to DNR Orders." From the College. Vol. 34, No. 1. Winnipeg: College of Physicians and Surgeons of Manitoba. February 1998. 1.
34	It should be noted that the College defines a "guideline" as a practice generally recommended. Nowhere does it state that there is a legal obligation or mandatory order to follow these directives.
35	"'Do Not Resuscitate' and Supportive Treatment Orders." Guidelines. The College of Physicians and Surgeons in Manitoba. I-G97.
36	Ibid.

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The Will To Live Template Project - Contents