ETHICS OF END-OF-LIFE CARE

“Physicians have no obligation to offer futile interventions based upon the ethical principle of beneficence, which requires a physician to act in ways that benefit the patient. Since futile interventions lack benefit, there is no obligation to provide them. Furthermore, the ethical principle of non-maleficence requires that physicians avoid harming patients with futile medical interventions, which often retain their potential for harm. If the proposed intervention is costly, the ethical principle of justice becomes an important consideration. Justice requires physicians to make wise use of health care resources and costly futile interventions cannot be justified. 

An opposing ethical argument, however, is the principle of autonomy or self-determination, which holds that adults have the right to make decisions about their own bodies. A common obstacle to futility decisions arises when the patient or surrogate believes his or her right to decide on treatment extends equally to decisions to receive treatment and decisions to forego treatment. This belief sometimes results in inappropriate demands for futile treatment. The treating physician’s ethical obligations, however, logically limit the patient’s autonomous choices to those options the physician can ethically offer. There remains some lack of consensus as to who should have ultimate decision-making authority.

Logically, the profession that creates a treatment has innate authority and obligation to prescribe its proper use. But unfortunately, medicine’s innovations are often widely applied well in advance of guidelines for their use. In some instances, guidelines are never clearly formulated. Meanwhile, decisions to forego futile treatment have been defaulted to patients and surrogates.  This state of affairs has become so common that it now seems out of place for a physician to make a unilateral futility judgment. Unilateral futility decisions can ethically be most easily justified in situations of absolute physiologic implausibility, such as attempting CPR in the setting of progressive hypoxemia from end-stage, chronic lung disease that makes adequate oxygenation impossible despite maximal ventilator settings. Once hypoxemia leads to cardiac arrest, no amount of CPR can improve air exchange. Thus, from a physiologic standpoint, CPR is absolutely futile.(1) Most situations, however, are not physiologically futile. The judgment of futility is, instead, based on a low probability of treatment success and/or an extremely poor quality of life.  In these situations, unilateral futility decisions are ethically less defensible, since the pursuit of treatment is based primarily on a value judgment. When futility is based upon a value judgment, the well-informed patient should decide to accept or forego treatment. The rare exception to this is when the likelihood of benefit is extremely low and the likelihood of harm to the patient is significant, such that the physician cannot ethically offer the medical intervention. Finally, whether the patient’s autonomous value judgment should be overridden by excessive cost (based on justice) in situations of borderline or definite medical futility remains an unresolved ethical dilemma for society.

Over ten percent of all health care expenditures are spent during the last year of life and a significant portion is spent on hospital care that is futile or of marginal utility.(2),(3),(4) Much of this care delivered is in intensive care units, where costs have been estimated to make up 28% of total hospital costs. End-of-life costs are likely to rise exponentially in the future, due to expanding technology and the increasing elder population.(5) In the U.S., there are currently 35 million people over 65 years old.  By 2030, as the baby boomers age, an expected 70 million Americans will be 65 or older.(6)

American society faces the serious challenge of addressing how we care for people in the last chapter of life. Not only must we find ways to allow cherished senior citizens a graceful exit,(7) but we must avoid the destructive impact of expensive over-treatment on Medicare and other health care financing systems for our aging population as we enter the twenty first century.”(8) Promotion of a society that ensures families that their loved ones can experience a “good death” at home has the potential for reallocation of healthcare resources to further benefit patients while at the same time substantially reducing healthcare costs.

Ethical conflicts sometimes occur when patients lack understanding of the meaning of low statistical probability and its full implications. More commonly, conflict arises precisely because patients and physicians may draw the futility line at a different probabilistic point, such as under 5% versus under 1 or 2% likelihood of success. Some patients might require 0% or unprecedented success before agreeing that a treatment is futile. Unfortunately, medical science often does not allow discrimination to such a precise degree of accuracy, since little research has been done in individual prognosis prediction and human physiology is highly variable.

    Informed consent is the communication process that results in consent to a treatment that is based on a reasonable appreciation of the facts and implications of a contemplated treatment. The AMA’s Code of Medical Ethics states that “in the communication process, you, as the physician providing or performing the treatment and/or procedure (not a designated representative), should disclose and discuss with your patient,

The informed consent process or “shared decision making” is never more important than when helping a patient and/or surrogate to make decisions regarding medical futility.

Conflicts can occur when physicians and patients differ on the goals of treatment. An example is the case of Helga Wanglie, a ventilator-dependent patient in a persistent vegetative state. Her physician felt that ventilation was futile because it “could not heal her lungs, palliate her suffering, or enable this unconscious and permanently respirator-dependent woman to experience the benefit of the life afforded by respirator support.”(10) Her husband disagreed because Mrs. Wanglie had consistently said she wanted respirator support for such a condition. The physician’s goal was to benefit the patient through healing and relief of suffering; the patient’s goal, according to her husband, was simply to have her life extended. Because cases of goal disagreement involve value judgments, the patient’s values should generally prevail. Based upon the above ethical arguments, an individual who is permanently ventilator-dependent, but values such an existence possesses the autonomous right to choose to continue treatment, regardless of whether others would agree that such a life is of value. If the patient is also in a persistent vegetative state, however, one may argue that it is no longer possible for the individual to derive any value from such treatment because such patients completely lack cognitive perception. A counter argument may be posed as to the ability to predict with absolute certainty that the individual will remain vegetative forever. Thus, a circular argument ensues, ultimately involving the question of who should decide on treatment in the face of probabilistic futility. Based on past judgments, courts would likely support the unilateral declaration of medical futility by a physician if ventilatory support has already been withdrawn; but would likely rule in favor of the surrogate should the case come to court before withdrawal of ventilator support. Both the individual and society would arguably be better served by resolving such conflicts through a local, ethics committee made up of lay and professional volunteers empowered with a clearer, more widely accepted definition of medical futility.

Ethical obstacles to futility decisions are even greater in cases where surrogates do not have clear past statements by the patient and are asked to make life and death decisions based on insufficient information from the patient. Surrogates commonly err on the side of aggressive care rather than assuming the responsibility for withholding or withdrawing treatment. The most difficult surrogate decisions are controversial treatment choices, such as withholding artificial nutrition and hydration.  Though the law and medicine clearly view artificial nutrition and hydration as medical treatments, surrogates may view them as nurturing or palliative, and may have difficulty withholding or withdrawing hydration and nutrition on emotional, religious, or ethical grounds. When attempts at curative and life-prolonging intervention have become futile but conflict arises, the challenge is to achieve consensus of all involved. Unfortunately, many physicians are ill prepared to artfully achieve the consensus required and effective, enlightened ethics committees are often lacking.”(11)

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