A contemporary consensus

Although saving lives always has been, and will ever remain, a primary goal of clinical practice, the initiation and continuation of intensive life-prolonging procedures may result in little more than a stretching out of the dying curve, or in the extension of an unbearable and unrelentingly miserable life. Over the last 20 years or so, patients, families, nurses, doctors, and people from all walks of life have been asking whether extension of life to the bitter biological end is the right thing to do, particularly when the sick and the dying find the physical, emotional, and personal costs of such treatment to be hardly bearable. A trend has developed over more than two decades, and its direction is away from an ethic of prolonging life at all costs towards an ethic emphasizing the quality of life and of dying over the duration of life taken as an absolute value. This trend, as evidenced in a line of court cases and in a voluminous literature in medicine, nursing, ethics, and law, is against the tethering of people with advanced, irreversible illness to life-prolonging treatments and technologies, particularly when the underlying disease is progressing and cannot be halted; and when the life extended is only marginally bearable or definitely miserable.

This consensus regarding withholding or withdrawing life-prolonging treatments has crystallized around seven basic considerations.

First, decisions about withholding or discontinuing life-sustaining treatments cannot be made adequately on the basis of a pre-determination that some treatments are extraordinary and others are ordinary. The real clinical-ethical issue is whether any treatment, be it technically simple or complex, be it an instrument of basic or of advanced life support, is in keeping with the current clinical goals for each individual patient. For this reason, the distinction between extraordinary and ordinary means has given way to the more meaningful distinction between proportionate and non-proportionate treatments.

Second, the proportionate/non-proportionate distinction implies that there are no intrinsic moral or ethical imperatives attached to different categories of treatment, such as cardiopulmonary resuscitation, ventilatory support, dialysis, medication such as vasopressors, antibiotics, and insulin, and the provision of assisted nutrition and hydration. Decisions to use, to forego, or to discontinue any of these and other kinds of treatment should be taken as a function of, and not in isolation from, the clinical goals of the total treatment plan for each patient.

Third, binary thinking that would set sacredness of life in opposition to quality of life, so that respect of the one would require abandonment of the other, is not the way to reach ethically sound clinical decisions.

Fourth, quality of life decisions are inescapable in clinical practice because physicians and clinical teams are ethically and professionally obligated to gauge the consequences of their work on the bodies and lives of the people they are professionally presuming to help. Yet, the quality of human life varies from person to person, and, indeed, varies for each person across the ages of the life cycle. The ethical danger in ‘quality of life’ decisions is that some lives may be judged as not worth living because they will never match up to some inflexible notions or scales, inevitably culturally conditioned, of what worthwhile human living means. Thinking of quality of life in absolute rather than in relative terms risks the mistake of ignoring that a meaningful human life is possible even far-out from the centers of biological, psychological, and intellectual normalcy.

Fifth, an ethical danger also lurks within any absolute emphasis on the sacredness of life. Since the introduction of powerful life-prolonging technologies in hospitals, people have feared being technologically tethered to the biologically living relic of the persons they once were, and can never be again. They have feared being clinically forced into the extension of a life now irreversibly damaged by disease, depleted of energy, and intolerant of enjoyment. In such and similar circumstances, it is now widely recognized as being ethically erroneous to read the sacredness of life principle as compelling absolute persistence in extending life by all means and at all costs, right up to the moment when a patient’s biology has utterly lost all capacity to respond. To insist on the contrary would be equivalent to insisting that a sick person’s biology is more sacred than their person.

Sixth, the emphasis in the contemporary consensus, at least within the countries and culture of the West, is on shared decision-making between physician and patient, with the patient holding primacy of power to decide. This emphasis comes to expression, to cite one example, in an amendment to the Criminal Code of Canada, proposed some years ago by the then existing, and now disbanded, Law Reform Commission of Canada. The amendment was designed to prohibit any relevant paragraph of the code from being interpreted as requiring a physician ‘to continue to administer or to undertake medical treatment against the expressed wishes of the person for whom such treatment is intended’.

Seventh, it would be a mistake to read the contemporary emphasis on self-determination as implying that there is no place in the contemporary consensus for withholding or discontinuing life-prolonging treatment when patients can no longer express their will and never expressed any thought about these matters before falling gravely ill. There is general agreement that incompetent patients have the same rights as competent patients. There is also general agreement that doctors and clinical teams should not be bound by law to administer treatments that are therapeutically useless and not in the patient’s best interests.

Physicians, clinical teams, and family members do not, of course, always agree on what are the best interests of irreversibly ill or dying persons. Moreover, some family members, when speaking with doctors about discontinuing life-prolonging treatments, may not have the best interests of a dying person as their decisive priority. These situations, as will be considered below, may provoke intensely difficult scenes at the bedside.

The contemporary clinical-ethical consensus about withholding or discontinuing life-prolonging treatments may simply fail to operate when there is no continuing communication among doctors, nurses, patients, and families; when doctors and nurses are not educated to attend both to the body and to the biography of patients; and when the organization of care in hospitals promotes the unreflective use of technology rather than the careful mastery of technology in the service of the patients’ goals and aspirations. When these failures occur, a technologically and bureaucratically dominated system tends to take charge, and that system may not know when or how to stop life-extending treatments, in great part because that system is not in intimate contact with the sick and dying people it is meant to serve.

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