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

From the MLPD point of view, the Law Reform Commission’s Discussion Paper raises a number of concerns. The following points, some of which were raised in the DNR research project supplement, Do Not Resuscitate Orders and the Law in Canada - Patients’ Rights by Sherri Walsh (2000), were considered in answering the questions in the Discussion Paper. These points, however, are not definitive.

a. Trust and the Doctor/Patient Relationship

The relationship between physician and patient is based on trust which facilitates many intrusive practices that would not ordinarily be allowed. This trust is rather one-sided in that it relies on the patient trusting the doctor, not the other way around. The patient depends on the doctor for accurate and timely information and advice, for medical assistance when and where necessary and appropriate, for help in continued living or adapting to physical or mental circumstances, to facilitate healing or maximize comfort and, as stated on page one of the Manitoba Law Reform Commission’s Discussion Paper, “to preserve and prolong life.” When doctors assume they have the right or duty to make potentially life-ending decisions for patients, they are engaged in a role change from that of supporting life to that of supporting or even prescribing death. If, as the Discussion Paper says medical guidelines state, doctors are not required to involve patients or their designated proxies in this shift or to follow their wishes, then they are assuming total control over patients without accepting accountability. Many patients may well experience the changed role as abandonment, one of the greatest fears of dying people and, indeed, of all people. Dr. David Kuhl wrote: “The nearer the experience lies to abandonment, the greater the sense that a basic trust has been broken. When trust is broken, people feel betrayed.” ^[1] Although Kuhl was referring to a child’s relationship to the parents, the same is true of any trust relationship. A role change by a doctor may even be experienced by patients and families as a form of assault.

Even when discussion is restricted to withholding or withdrawing medical treatment, medical power is not necessarily rooted exclusively in “futility” as implied by the Law Reform Commission’s Discussion Paper on page one. Doctors’ knowledge, position and influence, give them extensive power at the bedside and beyond which also influences end-of-life decision making. Their mere presence and the fact of their overpowering authority may take on a coercive element without any overtly coercive behaviour.

Another source of medical power influencing end-of-life decision making is professional self-governance. With the help of related fields such as bioethics, medicine creates guidelines which may or may not coincide with the law. It guides law making as it relates to medicine. Enforcement also falls largely within the realm of the profession. Unless, as in the case of the British doctor who killed unknown numbers of older women, an individual doctor irrefutably and openly flouts the law, doctors face their medical peers, not the law. The tendency in the profession is for doctors to support each other to avoid feeling like traitors to their profession.

It was my natural response to defend the doctor, to suspect that Max might be overreacting, accusing the doctor falsely, or not describing things the way they really happened. I didn’t want to be a witness to what he was saying or be incriminated by association. Like Max, I, too, was feeling angry over what had happened to him, at the fact that this doctor had dismissed him without understanding how his symptoms were affecting his life. But at the same time I had this strange loyalty to my profession.” [2]

This power coupled with internal loyalty leaves the interests of the public, especially individual patients, unprotected.

Therefore, declaring the doctor’s assessment paramount over the patient’s or proxy’s wishes makes any “consultation” with the patient a sham. Patients ignorant of their own powerlessness in such consultations may be lured into futile, frustrating power struggles with the attending physician. With the doctor holding the balance of power, as the Discussion Paper has acknowledged, such struggles end in the doctor’s favour or require great effort to resist: in the Andrew Sawatsky ^[3] case, his wife had to resort to the courts to wrest guardianship of her husband’s decision making from his Riverview doctors; Rudy Bachewich ^[4] was forcibly removed from his ventilator over the protests of his family. The predictable result is the erosion of patient and public trust in physicians and indeed in the entire profession.

Therefore, any policy or guideline that reinforces the doctor’s power by including total power over end-of-life decision-making should be viewed with great caution or even suspicion. In order to preserve the doctor/patient relationship the issue of trust must be a major, if not the predominant, consideration in all end-of-life decision making. Therefore doctors cannot be the only ones making decisions on withholding or withdrawing treatment for dying patients or others for whom treatment is perceived to be futile. And adding medical ethicists will not alleviate our concerns because many of them also rely heavily on medical assessments rather than on patients’ wishes and views or on the mysterious power of the will to live.

b. Vague Terminology

As in most guidelines to date, the Discussion Paper is rife with vague, ill defined terms such as “dignity,” “futility,” “quality of life,” “benefit” and “burden.” With the balance of power residing with physicians, the definitions of such terms also reside with the physicians, not the patients. If guidelines are based on vague words, then those guidelines provide no guidance at all. Instead they encourage doctors to use their own judgement based on their values and biases to extrinsically evaluate the worth of their patients’ lives. Promises of patient autonomy become nothing more than lip service.

All “qualitative” terms must be defined and the definition process must include non-medical input. The Discussion Paper has dealt with futility to some extent but, as the Paper acknowledges, it is not a definitive treatment. Even the process of dividing terms and treatments into qualitative or other categories is itself a qualitative process. Consequently all end-of-life evaluations are qualitative to some extent and they must either be made by or be based on values intrinsic to the patient. If patients cannot communicate their wishes, then attending physicians should be basing medical decisions on what most people in similar circumstances want. (see the research on the views of terminally ill people by Dr. Harvey Max ^[5] Chochinov, the bio-ethical expertise of Francoise Baylis ^[6] and the documented views of the MLPD).

c. Non-specificity of DNR (Do Not Resuscitate)

In theory DNR seems to be understood as a synonym for CPR or cardiopulmonary resuscitation, as is evident on page three of the Discussion Paper. In practice it can include any kind of medical intervention including medication or “artificial” nutrition and hydration as occurred when Michael Rosner had to fight for the right to receive antibiotics. ^[7] Therefore, while a no-CPR order might well be appropriate in cases where the patient has frail bones, a blanket DNR might not be. Such orders should be more specific and should consider the patient’s wishes at that time.

d. Therapeutic Privilege

Although Canadian law may not address doctors withholding information from patients, this is done routinely, for example with terminally ill people, even when they can fully comprehend their doctors’ words. This practice is not restricted to those who for cultural reasons avoid mentioning death to the dying. For example, when the late Mrs. W from southern Manitoba was diagnosed in 1999 as having terminal pancreatic cancer, her doctor turned to the family for direction on how much to tell her even though the family members stood to benefit financially from her death and were, therefore, placed in a conflict of interest. Patients kept ignorant about their medical situation cannot give informed consent to withholding or withdrawing treatment and, therefore, patient autonomy is undermined.

e. The Fallibility of Medical Judgement

Although this fact is acknowledged in the Discussion Paper, it bears re-emphasis. The lives of disabled people are filled with examples of medical mis-diagnoses. Theirs are not stories of diagnoses or treatments rendered difficult by disabilities but rather by the misconceptions of doctors with a negative bias about disability. Michael Rosner was only one example. ^[8] As a follow-up to Michael’s story, he lived for almost another decade, some of those years in his own apartment. Not only did he escape what would have been a medical self-fulfilling prophecy of his death, but he defied the doctors’ dire predictions, based no doubt on their understanding of physiological futility, that if he insisted on treatment he would spend the limited remainder of his days helpless in an institution. He also chaired the MLPD Council for two of those years.

f. Negative Bias

That a negative bias exists in our society especially toward noticeably disabled people is irrefutable. Beatrice Wright said a negative bias has the following characteristics: if a feature stands out, is perceived as negative and appears in a sparse context, internal or external, then the result will be a fundamental negative bias which “steers perception, thought, and feeling along negative lines to such a degree that positives remain hidden.” ^[9]

A recent prominent example of this negative bias was the way the Latimer case was treated in the lower courts and in the media. The victim, Tracy Latimer, was defined in terms of her disabilities to the point where she became a disability stereotype: she “couldn’t walk, talk or feed herself.” The negative attitude toward those features was evident in the fact that those aspects of her life were exaggerated until her occasional, situational pain became the factual error “constant pain.” The context of her actual life was minimized or omitted. Positive features of her life and her interactions with others (e.g. playing games and riding the school bus with the other children for at least a week after her father decided to kill her) and her non-verbal communications about her love of life were dismissed as inconsequential or even irrelevant until she implicitly fit definitions of an incompetent sub-human in desperate need of a DNR order. That dismissal paved the way for the public perception that her death was not only preferable to her life but that it was “necessary.” Her killer was perceived as her “compassionate” proxy and his version of events became evidence outside court that the law should be changed to allow more such "mercy killings." ^[10]

It was a classic case embodying the worst fears of those living with disability. Disability advocates were silenced inside and outside court while parents of disabled children who agreed with Latimer and other “experts” appropriated the voices and experiences of disabled citizens. Dick Sobsey of the University of Alberta is documenting countless cases of such “experts” killing disabled children.

Other examples of this negative bias lie in film and literature. In his analysis of American film treatment of disabled characters, Martin Norden, professor of communications at the University of Massachusetts-Amherst, created a list of disability stereotypes which can be roughly grouped into two categories: the worthy and the unworthy. An overarching theme is “cure or kill” with worthy disabled characters being rewarded with a cure and the unworthy ones, including any that challenge the prevailing stereotypes, either literally being killed off or figuratively being removed from the narrative. ^[11]

The cure-or-kill theme cannot be dismissed as mere fiction. “To a certain extent, this second option (kill) parallels our society’s treatment of PWDs (persons with disabilities) in general; if society can’t render them safe through a cure, it rejects them in ways ranging from simply ignoring them to institutionalizing them (and thus moving them out of the public sphere) to outright murdering them.” ^[12] The cure-or-kill theme was also prevalent throughout the Latimer case where the incurability of Tracy’s cerebral palsy - by definition permanent disability is incurable - was used by the defense as evidence of the “necessity” of her murder. That contention was left unchallenged by the prosecution and the media.

Common able-ist misperceptions about disability are:

	that people with disabilities should be protected from risky situations
	that people with disabilities are “damaged goods” so it is acceptable to treat them with less care and respect than others (e.g. hemophiliacs being given blood products not screened for HIV; those who hurt or kill disabled people receiving lighter sentences if any at all)
	that people with disabilities, particularly mental disabilities, are dangerous
	that disability is synonymous with suffering
	that people with disabilities have poor quality of life
	that, due to their poor quality of life, people with disabilities must be protected from further pain and suffering
	that death is preferable to life with a disability
	that disability is a symptom of decline and approaching death.

Within such a context of negative bias it is not possible for disabled people to be treated fairly in extrinsic judgements of their lives. Able bodied people, including medical personnel, have not experienced the effects of this negative bias and therefore cannot make a valid assessment of our “quality of life.” Consequently, any subjective analysis of any aspect of a patient’s life has to follow the patient’s wishes and medical treatment should be based on need, not on probability of a perfect result.

g. Euthanasia

No end-of-life decision making about another person can be divorced from euthanasia. There is hardly any difference between euthanasia and DNR orders imposed on patients against their wishes. Medical guidelines inevitably place the ultimate decision making in the hands of doctors, some of whom may bear a negative attitude toward the patient, e.g. “irreversible conditions,” which is how permanent disabilities could be described, is a term used by the UTMB Handbook of Operating Procedures ^[13] as a synonym for terminal illness. Other guidelines are similar. Also despite attempts to differentiate euthanasia from other types of assisted deaths ^[14], as in the Special Senate Committee on Assisted Suicide and Euthanasia report, in practise they blend into one.

Historically the fields of medicine and science embraced eugenics, the belief that the human race can be improved through genetic manipulation. In the first half of the Twentieth Century eugenics used the now infamous methods of selective breeding of the “desirables” and the elimination of the “undesirables” or “feebleminded” through forced institutionalization, sterilization and, in Nazi Germany, extermination in the fake showers of the T4 clinics. According to Angus McLaren ^[15] doctors were over-represented in the Eugenics Society of Canada. The Winnipeg Free Press prints a regular column by Dr. W. Gifford-Jones who openly supports forced sterilization. ^[16] In the field of genetics we can see that the philosophy of eugenics is far from dead. ^[17]

With the sordid historical connection between disability, euthanasia and eugenics-style thinking, it should be no surprise that disabled Canadians aware of these links are wary of any guidelines or legal rules giving more power to the already powerful and rendering the already powerless even more vulnerable. Of particular concern is the absence of input by knowledgeable people with disabilities and the appearance of obfuscation in the use of ill-defined language.

h. Purpose of Guidelines

The overriding purpose of guidelines on end-of-life decision making, such as DNR, appears to be first to ease legal concerns for physicians. Patient considerations appear to be secondary. Such guidelines presume that the patients involved will be terminally ill or their conditions will be “irreversible.” Rarely if ever do such guidelines acknowledge that their influence can extend beyond their narrowly defined target group to include other vulnerable groups such as people with disabilities.

Experts’ perceptions can be influenced by guidelines. It has been said that to someone holding a hammer everything looks like a nail. If end-of-life guideline “hammers” focus attention on signs of death and decline, then the tendency will be for the doctors using that hammer to find such signs. If the perception is that disability is a sign of decline and death, then people with disabilities will be classified with terminally ill patients. Guidelines that advise withholding or withdrawing medical support (DNR) from those who are dying or disabled but disregard the will to live and/or the difference between imminent terminal illness and life with disability, are a guideline hammer that promotes death. (see examples above re bias)

i. Intentions

There is no doubt that most doctors feel and try to act compassionately toward their patients. Doctors who deliberately kill patients such as Dr. Genereau in Ontario, are fortunately the exception, not the rule.

However, compassionate motives are not a guarantee of compassionate actions. Unless both giver and receiver perceive a given action as compassionate, then the compassion is only in the eye of the beholder or giver. On an international level, if financial aid is sent abroad with the best of intentions but without any direction from or regard for the recipients, then that aid may well be misdirected and experienced as a symbol, not of the giver’s generosity, but of his domination or even disdain. The same is true of disabled people or other patients subjected to end-of-life decision making that disregards their wishes.

There are two levels of intentions. The first is the intent of medical end-of-life guidelines, that is, of the profession as a whole. One stated intention is to increase patient autonomy in end-of-life decision making and yet the application of the guidelines appears to reveal an implicit intention to increase doctor autonomy. If guidelines state that in any dispute the doctor has the final word, then advising doctors to consult with patients or proxies while also advising them that they are not compelled to consult is not an example of compassionate motives to enhance patients’ choices but rather a poor public relations exercise in maintaining a mere image of medical compassion.

The second level is individual physicians’ intentions. With the high degree of authority doctors exercise in medical environments and beyond (as noted above; also note nurses’ reluctance to “blow the whistle” on the Health Sciences Centre baby deaths), it is virtually impossible to legally disprove doctors’ stated intentions. Consequently, handing the power of defining the difference between euthanasia and DNR to individual physicians leaves disadvantaged people unprotected from potential negative bias, whether deliberate or not.

If medical decision makers truly want to be seen as compassionate and if their intent is truly to follow patients’ wishes, then they should remain open-minded and examine, not only popular opinion and current practise, but also the work of those whose opinions may run counter to current trends: for example, Dr. Harvey M. Chochinov has researched the opinions of terminally ill people on vague terms such as “dignity” ^[18] and has documented their will to live, ^[19] even in their final hours. Dr. David Kuhl writes about deliberately taking time from his practice to learn to listen to his palliative care patients ^[20], a skill he hadn’t learned in medical school. The MLPD, CCD and the work of knowledgeable disabled writers are good sources on the views of people with disabilities.

Truly compassionate doctors care more about the quality of their relationship with their patients than about power over their patients. They are their patients’ advocates, not their adversaries and they make every effort to avoid becoming embroiled in disputes or power struggles, particularly at the end of their patients’ lives.

j. Futility and “Scarce Resources”

An adequate examination of the concept of futility, beyond the vagueness of definition already discussed above, would take more time and space than this response allows. However, one part of the Discussion Paper is troubling. Page 31 says that one factor in determining treatment success requires a “selection of values”, i.e. whose desired result will prevail. The Paper, quoting L. Olmsted, gives one factor as a clash of opinions on “The statistical cutoff point chosen . . . as the threshold for determining futility . . . there is always a potential survivor not predicted to survive, prompting the public and the courts to spend vast quantities of scarce resources to avoid the possibility of that survivor expiring.”

Although Olmsted is also quoted as saying that futility “generally fails to provide an ethically coherent ground for limiting life-sustaining treatment” (Discussion Paper page 32) and Rubin is quoted decrying unilateral physician decision making and instead advocating patient input, the Paper does not address the fact that the argument of futility coupled with “scarce resources” is already being used as a medical determinant for ending life-sustaining treatment. When Rudy Bachewich was taken off his ventilator in December 2001 against the pleadings of his family, the response of Prof. Arthur Schafer, director of the University of Manitoba’s Centre for Professional and Applied Ethics to the Winnipeg Free Press was, “’. . . if a patient isn’t benefitting from the prolongation of his dying, the family does not have the right to demand the doctor keep life support (going). If (financial) resources are available it’s not inappropriate to treat the family but not beyond a point where it deprives other patients.” ^[21] The phrase “isn’t benefitting” is clearly a reference to futility.

When pitted against others people with disabilities are at a disadvantage. As a minority our voting strength is limited and, because of the significant relationship between disability and poverty, we do not have the clout of wealth. When coupled with the negative perceptions of our lives as outlined above, the criteria used by Prof. Schafer in the Bachewich case make us suspicious of the motives guiding any doctor or ethicist who bases extrinsic end-of-life decision making on “scarce resources,” pitting one patient’s needs against another’s. Any resource-based measuring stick will find that, for persons with disabilities, medical intervention is the “prolongation of dying”, not the prolongation of living, and therefore futile. As the treatment of such disabled people as Mike Rosner and Tracy Latimer implied, disabled people are likely to be seen as robbing more worthy patients of scarce resources.

When medical benefits are not defined by patients but by a profession which in the past has discriminated against people with disabilities, poor people and visible minorities, how can disabled citizens be sure they are really receiving the equal access they have been promised? In the context of such concepts as “quality of life,” which often implies economic criteria such as self-sufficiency and productivity, there is no doubt that economic considerations other than “scarce resources” are already being used to predict how “beneficial” or “futile” medical interventions will be. Although this need not be a conscious process, it is present nevertheless. Consequently the MLPD cannot advocate that economic considerations be a part of decisions on withholding or withdrawing treatment.

---

1	David Kuhl, MD, (2002) What Dying People Want: Practical Wisdom for the End of Life, p. 215.
2	Kuhl, p. 41.
3	Rhonda Wiebe, (2000) Our Last Rights: Do Not Resuscitate Orders and People with Disabilities, p. 24.
4	Alexandra Paul, "He should have allowed to live", Winnipeg Free Press, December 21, 2001, A1, A4.
5	Harvey, M. Chochinov, et al, (2002) "Dignity in the terminally ill: a developing empirical model," 433 - 443, and Chochinov, et al, (September 4, 1999) "Will to live in the terminally ill," 816 - 819.
6	Sherri Walsh, (2000), Do Not Resuscitate Orders and the Law in Canada - Patients' Rights, pp. 25ff
7	Ruth Enns, (1999), A Voice Unheard: The Latimer Case and People with Disabilities, Chapter Four
8	See Enns, A Voice Unheard for more examples.
9	Beatrice A. Wright, (1988) "Attitudes and the Fundamental Negative Bias," p. 3.
10	Enns, (1999) A Voice Unheard, Chapters One and Two.
11	Martin Norden, (1994) The Cinema of Isolation, Rudgers University Press, New Jersey.
12	Martin Norden, (2001) "The Hollywood Discourse on Disability," p. 26.
13	UTMB Handbook of Operating Procedures, (1999) "Withholding or Withdrawing Life-Sustaining Treatment From a Patient With an Advance Directive," p. 1.
14	Special Senate Committee on Euthanasia and Assisted Suicide, (June 1995) Of Life and Death, pp. 13 - 15.
15	Angus McLaren, (1998) Our Own Master Race: Eugenics in Canada 1885 to 1945, p. 119.
16	W. Gifford-Jones MD, (October 9, 2002) "Logic, compassion should guide laws," D3.
17	David King, (2001) "Eugenic Tendencies in Modern Genetics," pp. 171 - 181.
18	Chochinov, Harvey, M. et al, (2002) "Dignity in the terminally ill: a developing empirical model," 433 - 443.
19	Chochinov, Harvey, M. et al, (September 4, 1999) "Will to live in the terminally ill," 816 - 819.
20	David Kuhl MD, (2002) What Dying People Want: Practical Wisdom for End of Life, p. xx.
21	Alexandra Paul, (December 23, 2001) "System paralyzed by fears of dying," A3.

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