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RESPONSES TO DISCUSSION PAPER QUESTIONS

Question 1. What should be the nature or form of legal rules governing decisions to withdraw and withhold life-sustaining treatment? For example:

(a)	Legislative guidelines (statutes or regulations to existing or new Legislation)?
(b)	Amendments to existing professional guidelines?
(c)	Other?

Legal rules governing the withdrawal of life sustaining treatment must be developed through a legislative mechanism. In Western parliamentary democracy, laws developed through elected representatives can invite broader input. Guidelines developed by and for individual institutions tend not to have transparent policy-making processes involving those who could be affected by those policies.

However, because democracy depends upon popularity, it can also stifle a minority view. In legislation on end-of-life where key decision makers appear to find disability indistinguishable from terminal illness, the legislative process must include significant input at all stages from people with disabilities who are knowledgeable about disability issues and their implications for end-of-life decision making. As stated under the Concerns section, guidelines have no legal clout and therefore are meaningless in protecting vulnerable citizens. Only laws and law enforcement can offer some protection.

Question 2: How do we make these new rules?

(a)	Who should be involved in creating the rules?
(b)	What process or processes should be used?
(a)	Regardless of the nature or form of arriving at legal rules, Canadians with disabilities who are knowledgeable about disability issues and their relationship to end-of-life decision making must be involved in the process at all stages. Although the input of the medical professionals must be considered, they should not override the concerns of the potential victims. Medical professionals may be concerned about retaining professional autonomy but people with disabilities are often among those considered to be at the end of their lives and they, too, are concerned about autonomy. However, in their case autonomy is about life and death, not merely work conditions.
(b)	An independent publicly funded tribune consisting of people with disabilities, seniors and medical practitioners with public consultation should create the rules.

Question 3: What should the rules be?

(a)	Should health care providers be required to obtain a patient's consent before withholding or withdrawing treatment?
(b)	If yes, should there be limits to the requirement to obtain consent? What should the limits be?
(c)	If consent is not required, who should decide to withhold or withdraw treatment?
(d)	What criteria should be followed in making such decisions?
(e)	If consent is not required, how can patients' wishes and interests be honored and protected?
(f)	If decisions to withhold or withdraw treatment are based on "Futility", should a legal definition of futility be established?
(a)	Yes.
(b)	If the patient is unconscious and has not designated a proxy, consent cannot be obtained. However, the attending physician can turn to research on terminally ill people and on disabled people to find what most people want in similar circumstances. The decision should acknowledge the strength and healing power of the human will to live and the ability to adapt to difficult circumstances. Age, terminal illness and disabilities should not be used to classify the patient as unable to communicate and thereby ignore their wishes.
(c)	The question does not distinguish between unobtainable patient consent (e.g. the patient is unconscious) and disregarding patients’ wishes. We are choosing to answer the first alternative here. The second, which involves the supremacy of physician authority, has been addressed in the Concerns section and is untenable. This question strikes at the heart of this debate. Although most of the time most proxies (parents, children, medical professionals and spouses) make good decisions which are in the best interests (i.e. life promoting interests) of their charges, there are a few who may make such decisions on purely ulterior motives. Adult children making decisions about parents from whom they stand to inherit are in a conflict of interest if they make end-of-life decisions for those parents. The Latimer case shows that parents who want their disabled children to die are not valid proxies simply by virtue of their care-giving positions. Under extreme circumstances where the withdrawal of life-sustaining treatment is the only choice and the patient cannot give his or her consent, then an independent tribune described in 2 (b) must be convened to make that decision. In addition, the will-to-live template currently being developed by the MLPD may provide an alternative method for patients to communicate their wishes. Also note the type of research referred to in (b) above.
(d)	See (c).
(e)	Patients’ wishes cannot be honoured or protected while ignoring them.
(f)	As noted in the Discussion Paper, all types of futility are value driven whether “quantitative” or “qualitative” and therefore futility cannot be a unilateral medical decision. A further problem with splitting futility into two types and ignoring the value driven basis of both is: who decides which kind of futility is being examined. In a medical setting, medical personnel may not recognize the need to consult others and will therefore determine independently whether the futility is quantitative or qualitative: e.g. “quality of life” is frequently used by medical personnel as a medical term not recognizing its qualitative nature. Also a doctor’s state of mind, e.g. fatigue, depression, stress, etc., while possibly not directly related to the case at hand, may still affect his/her qualitative decision making.

Question 4: How should disputes be resolved?

(a)	What should a dispute resolution process look like? Should it be informal or formal? Mediation, arbitration or court application?
(b)	Who should administer the dispute resolution process - health care providers or an independent agency?
(c)	Who should be responsible for funding and administering the process?

As noted in the previous question, a tribune consisting of people with disabilities, seniors and medical practitioners must be established at every facility with a DNR policy. Patients either directly or through their next of kin or lawyers should have the right to appeal. To ensure the tribune’s independence it should be funded directly by the province. Less formal methods are more likely to be abused.

Question 5: Should health care facilities' policies governing withdrawing and withholding of care be mandatory?

(a)	Should policies be consistent or have certain mandatory requirements?
(b)	Should policies be determined  (i) At the provincial level (for all institutions)?  (ii) At the regional level (RHA)?  (iii) At the institutional level?
(c)	Should there be different types of policies depending upon the nature of the health care facility?
(d)	Are automatic DNR policies appropriate? In what circumstances or for which kinds of facilities?
(a)	Policies should be consistent and there should be some mandatory requirements such as meaningful consultation with the consumer and his or her family/support circle. Policies should be determined at the provincial level in order to prevent inconsistencies in care. Manitobans moving among regions and institutions should be able to expect comparable treatment in each region and institution.
(b)	Different institutions should not have different policies. For example, in the Sawatsky case, Mr. Sawatsky went to Riverview for a short term stay for a specific purpose. Riverview had a DNR policy for all its patients. Because Mr. Sawatsky (and his family) did not define himself as being in a palliative situation, he wanted resuscitation if it became necessary.
(c)	There are no situations where an automatic DNR order should be placed upon a patient. Such an order should be placed only after appropriate consultation with the consumer and his/her family or support circle. During the home care workers strike in 1996, Ruth Enns had broken her only usable arm and was in hospital, slated for the Riverview Centre. She is in her middle years, healthy and active but, had she gone there, she too would have been under the blanket DNR order.

Question 6: Should economic consideration be relevant? If so, how?

No, neither the individual’s nor the medical system’s economic considerations should be relevant. If they are used in decisions to withhold or withdraw treatment, then either the decision is based on a negative bias against poor people which includes most disabled people (e.g. “quality of life” based on self-sufficiency, productivity or other personal economic criteria) or it forces the decision makers, presumably doctors, into a conflict of interest - playing two roles: as patient advocates and as administrators.

Also, as noted in the Concerns section, economic considerations invite extrinsic decision makers to pit valued patients against non-valued patients resulting in a sinister eugenics-style competition which the MLPD cannot condone. Such competitions can only further devalue the already devalued, namely people with disabilities.

In her supplementary document for the MLPD, Sherri Walsh identified several sections of the Canadian Charter of Human Rights which apply to DNR decision making. Therefore, economic considerations are invalid and if used could become evidence of an intent to trump the Charter.

Note: This paper was written before the release of the Romanow Report and, therefore, has not considered whether it contains any implications for this paper. Regardless of Mr. Romanow’s recommendations, the MLPD’s central principles of equality and equal access remain as outlined above.


Contents | Introduction | Concerns | Responses to Discussion Paper Questions | Bibliography