UNDERSTANDINGS OF “QUALITY OF LIFE”

“Twenty years ago I recruited Lance for our medical internship program. Lance was a charming 26 year old man who loved learning medicine and loved the outdoors. He was a stunt pilot and during his years with us in the training program he learned to play the viola in his spare time, ^[64] “recollects Neil Abramson, a medical doctor who authored the article, “Quality of Life: Who Can Make the Judgement?”. Abramson goes on to describe how, in his 3rd year of medical training, Lance began experiencing intermittent numbness and weaknesses of various extremities which led to the diagnosis of amyotrophic lateral sclerosis (ALS). As his condition worsened, Lance’s motor strength waned. He became, in Abramson’s words, “wheelchair-ridden”; he lost the ability to speak clearly, to eat or take care of his personal hygiene, and he anticipated suffering from all the complications of severe respiratory muscle dysfunction. Most of the health care professionals and friends around him recognized the disorder as being incurable and untreatable. Abramson describes Lance’s recognition of his life being one full of quality in the past, but his future might simply be a burden to others. This was expressed in his wish, “Never let them tube me. I wouldn’t want to live restricted in any way.”

A near fatal lung failure changed Lance’s mind, and, because of a fear of suffocation, he started using a respirator. Although most of the people involved in his care and his life felt heroic measures were not in his best interest, Lance and his wife used any methods available to keep him alive.

Nine years later, Abramson reports, Lance and Abramson met again. Lance was propped up in a wheelchair, his arms were strapped to his sides, and a ventilator supplied oxygen to him via a tracheotomy. A fistula was embedded on the side of his neck, he was unable to greet people with a handshake, a smile, or even the nod of his head. His speaking was un-interpretable to Abramson until it was translated by Lance’s wife. This is what Abramson expected. But what astonished him was Lance’s explanation that his life was rich. He explained that although he had lost the use of his muscles, his brain functioned perfectly. Furthermore, Lance worked almost full time as an emergency room physician. He was able to process patient histories and physical examinations and provide therapies through the assistance of nurse practitioners. He avidly researched current medical literature assisted by equipment which turned pages. He was in the process of opening a clinic to provide medical care and lifestyle transitional skill-building to other ALS patients. He had also learned to fly a plane all over again using technology which took direction for its operations via Lance’s eye movements.

This is not a Manitoba story, nor does it directly involve the placement of a “Do Not Resuscitate” Order. It is, however, an account of not one, but two medical doctors, Abramson and Lance, who undergo a dramatic change in their understandings about what constitutes “quality of life.” Abramson expresses this succinctly in his comment:

In our current healthcare climate, issues of quality of life, euthanasia, doctor-assisted suicide, cost benefit considerations, and the use of scarce resources for individuals with incurable diseases are common themes. Nevertheless, our medical ethics and individual morals commit us to focus on the patient as an individual. Had I been asked to be the one responsible for starting the respirator in order to extend Lance’s life, especially given the serious debilitation he had already suffered, I would have been negatively affected by the quality of life that I had pictured at that time based on my values. Never could I have envisioned the exceptional quality of life that Lance discovered; a creativity of life with richness and fullness. [65]

“Deciding for Others,” and “The Futility Debate” (Baylis) ^[66]

Françoise Baylis, Associate Professor of Bioethics Education and Research in the faculties of Medicine and Philosophy at Dalhousie University, prepared two reports for the Sawatzky v. Riverview Health Centre court case in 1999, namely, “Deciding for Others: The Established Ethical Framework for Treatment Decisions,” and “The ‘Futility’ Debate.” Both of these reports deal with issues around understanding the quality of life. This work is grounded in the ethical principle of respect for persons, which, to Baylis, gives patients the right to accept or refuse treatment, and deems the health care provider to be obligated to respect and promote the autonomy of the patient. Advance directives, within this context, are to be morally binding.

Baylis describes the need among practicing physicians for a change in approach from one that is paternalistic towards the patient to an attitude of interaction with the patient. Today, states Baylis, it is widely understood that good clinical decisions are made with and not for patients. Decisions that need to be made by patients who are unable to participate in the process due to incompetence should be made by the surrogate who acts in the best interest of the patient, and not by medical staff who’s actions may be devoid of those interests.

The whole matter of futility adds another dynamic to the complex issues around DNR Order application or the alternative life-saving measures. In Canada, states Baylis there is no moral obligation to provide futile treatment. This claim is not typically based on cardio-pulminary resuscitation being completely ineffective, but rather that resuscitation is not in the patient’s (or society’s) best interest.

Baylis applied this premise directly to the Sawatzky case. When the Chief Medical Officer (CMO) of the Riverview Health Centre stated in her affidavit that “treatment [for Mr. Sawatzky] is totally futile,” ^[67] Baylis contended that the term “totally futile” remained undefined and was used as an appeal to “the moral weight that attaches to the claim that treatment will not work.” ^[68] Furthermore, when the Riverview CMO stated that if resuscitation for Mr. Sawatzky did work, it would not be in the patient’s best interests because “very likely he would be left with additional brain damage and in a persistent vegetative state”. Baylis points out the inconsistency, at a philosophical level, of this argument, which can be summed up as follows -

Does “futile” mean:

	the treatment will not work medically? Or,
	the treatment is not worth doing ethically?

These are two different futility arguments which have the potential to contradict each other!

This debate leads to the question “who has the authority to make these decisions?” Baylis suggests two ways of processing this question:

1.	The decision can be based on medical considerations by persons with relevant expertise, but this should still involve consultation with the patient or patient surrogate.
2.	The decision rests on the subjective (in other words, personal and idiosyncratic) evaluation of the anticipated benefits and/or harms with particular attention to the magnitude and the probability of the outcome.

Clearly, with this second option, there is no objective standard to refer or appeal to in terms of making the decision.

Who, then, decides what is the quality of life of the patient? Do we see physicians as moral agents? Do they have the expertise to make these clearly value-laden decisions? Do they have the moral authority derived from a broad and just social consensus to do so?

Baylis puts forward a “Course of Treatment” Argument by contrasting the following:

   Premise One

PHYSICIAN SOLE DECISION MAKER
\/
HAS NO OBLIGATION TO DISCUSS WITH PATIENT/SURROGATE
\/
THEREFORE UNILATERAL DECISION MADE

   Premise Two

PHYSICIAN SOLE DECISION MAKER
\/
HAS AN OBLIGATION TO CONSULT PATIENT/SURROGATE
\/
POSSIBLE RE-CONSIDERATION OF DECISION

   Premise Three

PATIENT/SURROGATE & PHYSICIAN DECIDE
\/
CO-DETERMINATION OF COURSE OF TREATMENT
\/
PHYSICIAN’S UNILATERAL DECISION BECOMES A VIOLATION OF PATIENT’S RIGHTS AND VALUES

Making these decisions, according to Baylis, is further complicated when we pose the question, What is the goal of treatment? ^[69] Is treatment futile if it cannot achieve:

	the postponement of death?
	the prolonging of life?
	the improvement, maintenance or restoration of quality of life?
	an improved prognosis?
	an improvement of patient comfort?
	the reversal of an underlying condition?
	restoration of consciousness?
	restoring function?
	the ability for the patient to leave the hospital?
	achieving short term survival?
	achieving long term survival?
	Or
	achieving the patient’s goals?

Obviously, Baylis states, this is far too complex to be amenable to a resolution, but posing these questions does bring into sharper focus the various agenda at work in such a scenario and the possibilities for a conflict between end goals. All the components of this argument, however, become moot until the primary conclusion of determining who has the authority to make which decision is settled.

Additional Comments

Dick Sobsey, professor of Educational Psychology, University of Alberta, also makes several comments regarding quality of life issues in his paper, Disability, Discrimination and the Law.” ^[70] He makes the following observation:

“The quality of life argument says that for someone with a severe disability, particularly a severe mental handicap, the potential quality of life is very poor. By keeping them alive we are condemning them to a life of suffering. What’s interesting about the quality of life argument is that it makes an assumption that we can objectively measure the quality of somebody’s life. The truth is that if there is such a thing as quality of life, it exists only as a subjective phenomenon. People can only rate themselves with any kind of meaning. When we talk about quality of life in terms of severely handicapped newborns, we are talking about our view of their potential IQ. Can we correlate IQ with quality of life? Most of us would disagree. [71]

Sobsey substantiates his comments with a description of a most interesting study done recently at the University of New Jersey. ^[72] It involved caregiversand their ventilator-assisted patients. The caregivers were asked to rate their own quality of life on a scale from 1 - 8. They were then asked to use the same scale to rate the quality of life of the people for whom they provided care. At the same time, the people who were ventilator-assisted were asked to rate their own quality of life using an identical scale.

The results of how the care-givers and the ventilator-assisted people rated their own lives were virtually identical - one group was 5.30 and the other was 5.36. However, when the care-givers rated the lives of the others, the rating was remarkably lower, 2.5. Sobsey remarks on his assessment of this study by saying:

“This quality of life measurement is only the particular view that we impose upon people with disabilities. For people with disabilities, there is an initial period of adjustment, but their lives, in terms of thier own quality of life ratings, are neither better nor worse than anyone else’s.”

Sobsey goes on to state another problem with the “potential quality of life” argument, stating it can be made about many facets of the population, not just persons with disabilities.

“If you had a child who was born into a Jewish family in Germany in 1938 or 1939, how would you rate its potential quality of life? In our present society, if we look at children who come from poor families versus those who come from rich families, who has the better potential quality of life? Or children who are born into families with chronic abuse problems? If we can identify many children who, at the time of their birth, have a potential for a very poor quality of life, are we prepared to propose killing all those children as a reasonable solution to their particular problem?” [73]

Sobsey concludes by asking - if we are not prepared to let all these other people die, why should we apply that rationale to persons with disabilities?

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64	Neil Abramson, M.D. "Quality of Life: Who Can Make the Judgement?" The Journal of Medical Ethics. San Francisco: Institute for Jewish Medical Ethics of the Hebrew Academy. January, 2000.
65	IBid. 4.
66	Francoise Baylis, PhD. Deciding for Others: The Established Ethical Framework for Treatment Decisions and the Futility Debate. Dalhousie University: 1999.
67	IBid. 2.
68	IBid. 2.
69	IBid. 5.
70	Dick Sobsey. "Disability, Discrimination and the Law," Health Law Review (1993) 2 Health L. Rev. No. 1, 6-10.
71	IBid. 3-4. (Emphasis mine).
72	Ibid. 4.
73	IBid. 5.

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