Carrying Out End-of-Life Refusal Orders in a 'Culture of Refusal'
2 Criteria to Determine Licitness of Rejecting Life Sustaining Treatment
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Q: I am a nurse in a surgical intensive care unit. It is not uncommon for family members to announce that their incapacitated loved one would not want all of the invasive equipment such as ventilators, feeding tubes, vasopressive medications, etc. We are not infrequently directed to remove tubes and medications and to start a morphine infusion and to titrate it upward to make the patient comfortable. Is it licit for me to carry out these orders?
E. Christian Brugger responds:
The answer to this question depends on at least two things: first, whether or not the directive is expressive of the wishes (i.e, the will) of the patient; and second, whether the directive is morally legitimate. Permit me to consider both.
The decision whether or not to accept or continue some treatment is first and foremost the patient's. The wishes of family members can play an important role in assisting patients to make good decisions. But these wishes are secondary. This is consistent with the "principle of autonomy." Autonomy is simply a technical term (derived from the Greek words for "self," autos, and "law," nomos) for the truth that God entrusts to each person the moral responsibility for self-direction. Autonomy designates both the right and the duty of each person to seek out and find the truth and when it's found to adhere to it. The medical ethical principle of "free and informed consent" derives from autonomy.
If a patient has an Advance Directive (AD), health care workers should appeal to it for information about patient wishes. Unless there is good reason to believe that the information on the AD is false or fraudulent (i.e., not expressive of the rightful will of the patient), or directs some kind of immoral behavior (e.g., suicide), medical personnel can carry out the directives in good faith, including orders for the removal of life-sustaining treatments (cf. USCCB, Ethical and Religious Directives for Catholic Health Care Services (ERD), 5th ed., no. 59).
If the patient has designated a proxy decision-maker through the execution of a Health Care Power of Attorney (HCPoA), then the proxy is legally authorized to act as the patient's health care agent to make any necessary care decisions on the patient's behalf. The proxy has a grave moral responsibility to make decisions according to the will of the patient, and if the patient's will is unknown, to make decisions that are in the best interests of the patient.
If the patient has neither an AD nor a HCPoA, next of kin are often consulted in order to clarify the mind of the patient for end-of-life care. Because family members sometimes have mixed interests in these end-of-life decisions, health care workers should always perform due diligence to ensure that the oral directives of family members are consistent with the wishes of the patient. If, for example, an elderly widow or widower has three children, the doctor or nurse if possible should consult with all three before any consequential decisions are executed. Because of the irreversible character of decisions to remove life-sustaining treatments, an even greater measure of due diligence is required before executing them than before executing decisions to continue treatments that are medically indicated to preserve life.
If a health care worker has doubts as to whether some serious directive stems from the legitimate will of a patient, he or she should resolve the doubts before proceeding with any activity, especially activity that will result in the patient's death.
"Culture of removal"
I said above that rightfully executing medical directives also depends on whether the order is morally legitimate. Several factors bear upon the question of legitimacy. I will speak about one in particular.
The last 25 years in end-of-life care in the US has witnessed the rise of an increasingly rigid "refusal mentality" toward the use of life-sustaining procedures, especially for the elderly. It characterizes not only the culture of health care institutions and elder-care facilities, but also of elderly persons themselves and their families. "I don't want to be a burden." "Being hooked up to tubes is dehumanizing." "I would never want to live like that!", (meaning on life-support). "I'd rather die than sacrifice my independence." In our attempt to prize independence and high-functioning, we are unwittingly becoming a culture that's intolerant of that stage of radical dependency that inevitably accompanies old age.
Catholic teaching holds that a life-sustaining treatment is rightly refused -- and only rightly refused -- if it's futile (i.e., it does not promise a reasonable hope of benefit) or it's excessively burdensome (cf. ERD 57). Otherwise, it should be accepted. Why? For the simple reason that life is always good, even when incapacitated. Because of its intrinsic goodness, the effort to preserve it ordinarily holds a presumption over letting die. This is simply another way of saying that sustaining life, though not always required, is never pointless. The proposition that asserts: "this or that life is not worth living" is literally never true. No human life, no matter how diminished in its capacities, is without intrinsic worth. So strictly speaking, every life at every stage under every condition is worth living.
But morality does not require us in every instance to do everything possible to sustain life. The presumption to act on behalf of its preservation (but never to act against it) can be overridden when very serious burdens promise to accompany its preservation. No one who knows Catholic teaching on end-of-life care in the last 60 years can rightly accuse the Church of imposing, advancing, or even implicitly holding an unreasonable "preservationist" mentality.
Whereas the pendulum in the 1950s-1970s may have tilted excessively in the direction of adopting life-preserving measures, no such excess exists today. The "duty to refuse" has become the mantra of the 21stcentury. And health care workers must do what they can to resist it.
Given the widespread refusal mentality today and the pressure it places especially on elderly persons, there is an increasing probability that refusal directives, whether given orally or codified onto forms such as Living Wills (or the dangerous new document known as the POLST form), will be wrongly decided. Patients who have a duty to accept antibiotic infusions, or intubation for assisted feeding or respiration, or CPR, or dialysis, precisely because those treatments would not be futile and do not pose an excessive burden, may be wrongly motivated to direct that they be removed or withheld.
Having said this, I do not think that health care workers are morally bound to scrutinize the motives of every patient who directs the refusal of life-sustaining treatments. This would unnecessarily burden the delivery of health care by imposing on physicians, nurses and physician assistants a task that at least in some instances could not be carried through to completion (an unconscious patient with a refusal order can no longer express his or her intentions).
But those who advise and assist patients in completing ADs have the duty to facilitate good moral decision making. Patients inclined to refuse life-support should only do so for upright reasons (e.g., when proposed treatments are disproportionate to the benefits promised). Likewise they should be encouraged (without coercion) not to act on disordered motives (e.g., because they feel their life has lost its value, because others want them to refuse, because they are afraid of being a burden on their caregivers, etc.). Advisers should, I believe, inform patients completing AD's of the work of the Patients Rights Council.
Finally, immoral orders should not be carried out. In some instances, assessing the wrongness of an order is straightforward, for example, the order to remove nutrition and hydration from a patient for whom they are necessary to sustain life (cf. ERD 58). But some refusal orders are more difficult to assess.
In principle, any order that directs the withholding or removal of life-sustaining procedures judged to be ordinary and proportionate is unethical and contrary to Catholic teaching (cf. ERDs 56-57). Making this judgment is not always so simple. And so, following ERD 59, health care workers may presume that refusal orders are rightly decided unless there are good reasons for concluding otherwise. If there are good reasons, then health care workers should undertake due diligence in order to resolve their doubts before carrying out the order.
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E. Christian Brugger is a Senior Fellow of Ethics and director of the Fellows Program at the Culture of Life Foundation; and the J. Francis Cardinal Stafford Chair of Moral Theology at St. John Vianney Theological Seminary in Denver, Colorado.
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