I wish to offer a range of reactions to the concept of "terminal dementia" as well as to the associated "Aversive Feeding Behavior Inventory" and the "Aversive Feeding Dependency Scale" tables with medical recommendations published in the last issue of the newsletter not to place feeding tubes in severely demented patients. I hope readers did not get the impression that the New York City Long Term Care Ethics Network, as a body, endorsed these recommendations by featuring them in its publication. No such consensus exists on our Board, let alone among physicians, patients, families, or society. This remains a morally controversial matter, as indeed it should be.

In my view, it is crucial for the Ethics Network to represent diverse perspectives on bioethical issues. This pertains to conference programming, newsletter content, the Speakers Bureau, and any ethics consultation the Network may provide. Our organization should not permit itself to be perceived, as I fear it may have been in the last newsletter, to favor one or another approach to end-of-life care, e.g., devising ethical rationales for terminating life-sustaining treatment in the frail elderly, on the one hand, for continuing treatment - no matter the burden to the patient - based on vitalistic religious teachings. Instead, in a pluralistic society, we should insist on nuance in ethical analysis. We should pay careful attention to the particular facts of each situation, obtaining as much information as possible from all relevant stakeholders. While clinical assessments of diagnosis and prognosis are essential in evaluating risks and benefits of various treatment options, they should not, in the decision making process, replace a meticulous examination of the patient's values and beliefs about the meaning of life, illness, and death. My concern is that physician-generated assessments of various stages of dementia with recommendations to withhold tube feedings may well seek to avoid this rigorous patient-centered values exploration. Here are some additional points:

• The premise underlying instruments to assess and to stage eating disorders in advanced-dementia appears to be that "terminal dementia" is the same as "terminal cancer." My experience as a health-care chaplain for a quarter century reveals that many patients and their families do not accept this comparison. Many others do.

• Whether a patient or a family considers advanced dementia a terminal illness requiring palliative care (comfort measures but no feeding tube) or a chronic illness for which continued life- sustaining treatment (a feeding tube) is still appropriate hinges on their personal values and beliefs.

• Some family members and nursing home staff view the advanced- dementia patient as having lost core features of personhood: memory, recognition of people and surroundings, the ability to communicate, to make choices and to act on them, to eat and to drink. This degree of incapacitation, to them, does not constitute a minimally acceptable quality of life. Thus, the "person" occupying the bed has for all practical purposes already died; the goal of treatment therefore should be to permit the death of the body to occur in comfort sooner than later by not providing "futile" nutritional support through a feeding tube that will needlessly prolong the "dying process."

• Other family members and staff, when beholding a severely demented patient, see a person who, although ill and vulnerable, is not necessarily dying immediately. This is a father, mother, sister, brother, aunt, uncle or friend who evokes memories of a shared past. While this individual can no longer function or interact with others in the myriad ways that he or she is used to, that, in the minds of some, does not forfeit the patient's continued moral interest in receiving appropriate life-sustaining treatment, including enteral feeding.

• Whether it is ethically correct to attach the label of dying to an individual with severe dementia, whose life may be prolonged indefinitely by a feeding tube, is not solely a medical decision. It is, in addition a deeply personal choice that should be governed by a patient's autonomous wishes. To discern those wishes necessitates a careful values history review and analysis. This is the essence of good clinical ethics consultation. This is how we try to conduct ethics consults at my facility. Medical assessments should not short-circuit this review.

• Assessment and staging instruments in eating disorders of advanced dementia are a useful contribution toward educating surrogates about the benefits and risks of enteral feeding. These assessments should not, however, be allowed to medicalize decisions that belong more appropriately to the realm of personal beliefs. Physicians who choose to utilize these instruments in discussions with families should be careful not to appear to preempt the surrogate's decision whether or not to place a feeding tube based on "objective" medical assertions of "futile" treatment. Medical information should be imparted with the disclaimer, "The decision, ultimately, depends on your knowledge of the patient's values and beliefs."

• What troubles me most about extending definitions of terminal illness to conditions that were not widely regarded as imminently lethal in the past, such as dementia, is the proponents' own personal biases with respect to dementia may consciously or unconsciously mask claims of medical and philosophical objectivity. This concern arises most acutely when some advocate revising "practice guidelines" in cases where patients have not executed advance directives. New York State law currently mandates life- sustaining treatment except in instances where "clear and convincing" evidence exists that the patient, while able to make decisions, would not have wanted treatment in the instant situation. A proposed revision of medical practice based on a favored change in the law would routinely withhold feeding tubes from patients who have no advance directives, unless clear and convincing evidence existed that the patient would have wanted the feeding tube. This would dramatically reverse a longstanding presumption in law and in clinical practice in favor of sustaining life in cases of uncertainty about the patient's wishes. The ethical rationale for this reversal is that in certain stages of disordered eating in severe dementia, the patient has become terminally ill and initiating artificial nutrition and hydration at these advanced stages would be futile. Medicalized staging of severe dementia with recommendations to provide palliative care only without a feeding tube on grounds of futility lays the groundwork, among other things, for supporting revised practice guidelines in severe dementia. Healthcare professionals involved in ethical decision making should be aware of this agenda that may or may not be readily apparent.

• Whether an advanced dementia patient is, from a medical perspective, truly terminally ill or not, one thing is certain. If the patient needs a feeding tube in order to survive and receives only palliative care, he or she will surely become a terminal patient after a short time and will die.

• Finally, the goal of medical ethics consultation in long-term care should be to respect patient's wishes, either to sustain their incapacitated lives or to allow them to die with dignity and comfort. The goal should not be to rationalize letting them die without regard to their wishes by invoking so-called "objective" medical criteria.

https://www.angelfire.com/on/NYCLTCethicsnetwork/rlsk.html

Ethics Network News, Winter 1998, Volume 4, Number 1, pp. 8-9.

Posted 7/12/99

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