By Nancy Neveloff Dubler
LEGAL PRINCIPLES and normative bioethical analysis should be clear; but in reality, decision-making in the context of families tends to be muddy. This axiom is a fact in any medical center. Consider the following case of a 75year-old patient who was admitted to a hospital with a narrowing of the cardiac valve:
The patient had visited the Emergency Department of a hospital four times over the past few months for difficulty breathing but was alert and conversant when admitted to the medical center. Before her admission she had appointed one of her five children, a daughter, to make decisions for her if she were not able to do so.
This appointment, called either a proxy appointment or a durable power of attorney for health care decision-making, selects a person to make decisions for a patient if she is not able to do so. This person, proxy, or agent, is empowered to make decisions according to a set of decision-guiding standards: first, the explicitly communicated wishes and preferences of the previously capable patient, expressed either verbally or in writing; second, according to a standard of “substituted judgment” that is a notion extrapolated from her patterns of life, values, and relationships; and third, in the absence of guidance from the first and second standards, what is in the “best interest” of the patient. Some patients, who do not appoint a specific person, complete a “Living Will,” which outlines preferences and directives.
The patient had a Living Will that stated the list of interventions that she would not want if her condition were “terminal.” After two surgeries, an infection, and renal failure, she went into cardiac arrest and was placed on a ventilator. At that point a bioethics mediation was called by the clinical care coordinator who thought that a do-not-resuscitate order (DNR) would be appropriate.
Present at the mediation were the cardiac surgeon and a surgical fellow, the daughter/proxy and her husband, the nurse coordinator, and the mediator. The surgeon began by stating that the patient was not terminally ill and that all aggressive measures were medically appropriate. The daughter, with some encouragement from the mediator, shared her earlier discussions with her mom and the fact that her mom would not want to have these interventions if she were so sick. At this point the husband accused his wife of abandoning her mom, being less of an advocate than the situation required, and being responsible for the death if her mom died. Under the assault of the surgeon and her husband, the patient’s daughter agreed that a DNR order should not be written. Some time later, after the patient’s conditioned weakened, the surgeon consulted again with the daughter, and later wrote a DNR order for the patient.
A number of lessons emerge from this case. It is difficult to be a proxy in the real world of a dying patient. Medical facts, especially prognoses, are difficult to establish with certainty, and uncertainty leaves the proxy with few markers for the “right” decision. Family disagreement can undermine the commitments of the proxy as the prospect of death is so daunting and final. Doctors and nurses face death daily; for families this singular confrontation can be disorienting. Disagreement among the family members may place the proxy in the position of opting for future stable relationships over past commitments — going forward in calm may overwhelm the need to honor past commitments, especially if the patient is no longer aware and sentient.
Health care at the end-of-life is a complicated matter that requires respect for the principles of ethical decision-making, support for family members burdened by the responsibility to decide, and acknowledgment that the paths to death may not be smooth and easy. When Jewish families make decisions, the issues can be further complicated by uncertainty regarding what halacha requires. Various rabbis have a wide swath of interpretation but most agree that futile technologies need not be instituted and that orders not to resuscitate are acceptable when the patient is in the process of dying.
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