Journal of Humanitarian Medicine - vol. IV - n. 3 - July/September 2004
QUALITY OF LIFE AND MEDICAL PRACTICE
Radana Königová
Professor, Prague Burns Centre, Third Medical School, Charles University, Prague, Czech Republic Regent, International Association for Humanitarian Medicine Brock Chisholm
The concept of “quality of life” as it figures in medical decisions has been explored in interdisciplinary discussions between doctors, philosophers, theologians, and other interested parties since 1985 and, indeed, both the Czech Burn Association and the International Association for Humanitarian Medicine conducted two symposia on the subject.
The expression “quality of life” is now being increasingly used not only in the medical and legal literature but also by patients.
Technological advances have enabled patients to be saved from conditions that would previously have brought about their death. The growth of medicine’s power to sustain life in the face of critical, terminal, or debilitating illness has been so rapid that it has caught our society unawares, leaving us unsure of how to deal with the choices with which we are presented. A conflict occurs in the treatment of an individual patient between the aim of prolonging life (quantity of life) and the aim of promoting quality of life.
Can quality of life be measured? Quality of life is what successful treatment aims at, other than extension of life. It is best estimated under the following five headings:
- degree of pain, distress, or discomfort experienced, whether physical or emotional;
- degree of normal activity attainable;
- nature of personal relationships achievable;
- extent of capacity to undertake and complete pro-jects;
- extent to which hopes and ambitions can be fulfilled.
The first two items in the list seem “objective” when contrasted with the remaining three.
The doctor should be able to predict how much pain the patient is likely to experience from a given treatment and what degree of activity the treatment will allow. At least, in principle, this can be done, as patients differ in all sorts of respects.
The other three items (which might be called “subjective”) are more difficult to forecast. Success in relation to them depends upon the character and personality of the patient and on his or her willpower.
What really matters is what the individual feels as “subjective” satisfaction. In competent patients quality of life should be assessed entirely by the individual person.
Medical practitioners have an important role to play in taking the decisions with which patients are confronted: quantity or quality of life? In incompetent patients (including young children and the mentally handicapped) there can be no question of discovering their preferences. By what standard is their quality of life to be assessed and who is to do it? Whose quality of life is to count when a choice has to be made between treatments that differ in the nature and extent of the burdens they place upon relatives and others who care for the patients?
Doctors and other health care professionals occupy a special sort of position in our society, facing life-and-death decisions. They all have a responsibility to take due care according to ethical principles: above all, not to injure or harm the trusting patient. A duty of non-maleficence is stronger than a duty of beneficence. It may be more harmful to patients that their lives should be extended in a way that prolongs suffering or entails a loss of dignity than that they should be allowed to die peacefully.
There is another principle within medical ethics, the principle of autonomy, implying that all decisions relating to treatment should be made by the patient, who must be well informed of possible benefits or risks when there are alternative treatment options (doctrine of informed consent). There can be a clash between autonomy and beneficence or non-maleficence when a patient requests treatment that is not as good as an alternative or is unnecessary, futile, or even harmful.
The doctor still has a responsibility to assist the patient in decision-making. Such assistance requires the doctor’s sensibility to issues of quality of life and the reliability of studies of quality of life under different treatments, if the advice is to be useful.
The ethical principle of fairness is called distributive justice. Allocation of (scarce) medical resources is divided into macro allocation problems and micro allocation problems. The first one is: what proportion of society’s resources should go towards health care? The second one is: whom to choose between competing candidates for some form of treatment that cannot be given to all who need it?
Principles of truthfulness and confidentiality arising in medical practice can be resolved only by a sensitive and determined effort to uncover the facts of the case; it is a process in which both the intuitions and the principles undergo a process of testing.
The attempt to measure quality of life is an attempt to make comparisons regarding the life of the same individual under different circumstances and to compare the different states of an individual’s life to the lives of different individuals.
Although the right of patient autonomy was articulated in 1914 and the phrase “informed consent” was coined in 1957, it was not until 1985 that open discussion of explicit policies to limit medical care began. The quality of life can be as strong a rationale for a DNR order (do-not-resuscitate) as futility of therapy.
Different qualitative factors contributing to DNR decisions are encountered in burn medicine. Modern burn care often leads to the dilemma of what should or should not be done for patients with clinical deterioration and organ system failure with no response to therapy (Frantianne, 1992). The questions are “When is enough enough?” and “Who decides?”
A structured conference is recommended to address these issues and to help decide whether to continue invasive diagnostic and therapeutic intervention or to allow the patient to “die with dignity”.
Every life is different from any that has gone before it, and so is every death.
The uniqueness of each of us extends even to the way we die. Every one of death’s diverse appearances is as distinctive as that singular face we each show the world during the days of life.