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How to Handle End-of-Life Care Decisions with Families of Demented Patients

doi: 10.1097/01.NT.0000363231.12576.57
Ask the Neuroethicist

Dr. Bernat, professor of neurology and medicine at Dartmouth Medical School, formerly served as chair of the AAN Ethics Law & Humanities Committee, and is the author of Ethical Issues in Neurology, 3rd ed. (Lippincott Williams & Wilkins, 2008).

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Neurology Today's newest column, Ask the Neuroethicist launches this month with advice from James L. Bernat, MD, former chair of the AAN Ethics, Law, and Humanities Committee, on how to handle end-of-life care decisions with families of chronically ill demented patients. Are you looking for advice or direction in handling a tough ethical quandary or challenge in your neurology practice? Dr. Bernat and others with expertise in neuroethics are available to answer your questions. Submit your questions and ideas for topics to

Q: You are caring for a patient with advanced Alzheimer disease who is bedridden, does not communicate, and chokes when fed. Her daughter wants to meet with you alone to talk about end-of-life care for her mother. Should you send a bill for your time? The daughter wants you to give her medication to “end her suffering.” What should you do? You had a previous discussion with the patient's son and he wants you to do everything. How should you resolve this disagreement?



DR. JAMES L. BERNAT: The propriety of physicians billing patients or their insurers for time they spend discussing medical care with family members has both ethical and legal aspects. It is entirely justified ethically for a physician to bill for time spent discussing treatment with family members who serve as lawful surrogates for making medical decisions on behalf of a cognitively incapacitated patient — in this case, the siblings' mother has advanced dementia.

The legal and ethical doctrine of informed consent requires physicians to conduct consent discussions with lawful surrogate decision-makers before we begin a course of treatment. This requirement provides the full ethical justification for charging for professional services in the same way we justify our charges for speaking to a patient during a consent discussion. Specific insurance regulations governing payment for these conversations may vary but neurologists have a powerful ethical justification for billing.

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The daughter's request — that the neurologist give her mother medication “to end her suffering” — sounds like a plea for involuntary active euthanasia. The act would be considered euthanasia because the physician must order or administer the medication parenterally because the patient cannot swallow. That the physician administers the drug distinguishes the act from physician-assisted suicide in which a patient requests that a physician write a prescription for a lethal dose of medication and then later swallows it voluntarily to end her life. The act requested here counts as active euthanasia (rather than passive) because the physician must administer a lethal agent and is not simply discontinuing a life-sustaining therapy. It is involuntary because the patient is not requesting it herself.

It is possible that I have misinterpreted the daughter's intent, and that she is simply requesting palliative care for her mother. But the finality of her phrase “give her medication to end her suffering” implies to me she wants the medicine to cause her death.

Involuntary active euthanasia is illegal everywhere as a violation of criminal law. Voluntary active euthanasia — when a competent patient herself requests a physician to administer a lethal injection to cause her death — is illegal in the United States and in all other countries except the Netherlands, Belgium, and Switzerland. Physician-assisted suicide is illegal in all states except Washington and Oregon, with one court in Montana recently claiming it is lawful there.

Involuntary active euthanasia can constitute grounds for a charge of homicide against a physician, though in many cases, physicians are not charged and grand juries may refuse to hand down homicide indictments for physicians who are charged because of their compassionate motive. In addition to its illegality, involuntary active euthanasia is unethical. Even those scholars who advocate the ethical propriety of physician-assisted suicide and voluntary active euthanasia — citing arguments for the primacy of respecting a person's autonomy rights of self-determination — draw the line against allowing involuntary active euthanasia which is widely considered to be wrong.

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The neurologist should explain to the daughter that the act she requested is illegal and unethical, and offer an alternative approach. That approach should include a discussion with the adult children about the appropriate goals of the care of their mother given her diagnosis and prognosis in the context of prevailing clinical practice guidelines, and their understanding of their mother's prior stated treatment wishes. The neurologist and family members must agree on the goals of care before proceeding with any discussion of treatment plans.

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The son's claim that “he wants you to do everything” for his mother is one that, unfortunately, is commonly heard in clinical practice. Usually, this request is based on a false premise, it often has psychological roots, and requires time to explore and resolve.

In this case, the adult children appear to have very different ideas about the appropriate medical care for their mother in her current state of advanced dementia. In meeting with them, the neurologist can determine if their mother has previously designated a health care agent (known in some jurisdictions as a durable power of attorney for health care) who will function as her lawful surrogate decision maker. If such an agent has been named and is not one of the two children, the neurologist also should include that person in the conversation. If no health care agent appointment has been made, the nuclear family, including the spouse and adult children, can function jointly as an informal surrogate decision-maker, assuming they can reach agreement on the treatment plan.

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During the family meeting, the neurologist can review the patient's diagnosis and prognosis, including her current inability to eat. The neurologist can review practice guidelines from the AAN and the American Geriatrics Society, which provide that feeding tubes should not be routinely inserted in patients with advanced dementia once they no longer can eat. One goal of the meeting is to explore their understanding of their mother's wishes for life-sustaining treatment in light of her advanced dementia. Most patients do not wish to have life-sustaining treatments including a feeding tube when the future holds only progressive further worsening of their cognitive function. The appropriate form of treatment for most patients with advanced dementia is palliative care in which measures that maintain comfort are emphasized and whose goal is to improve the quality, not the quantity, of life.

The family member who assertively states “I want everything done for her” usually is communicating a hidden message. Often it is, “Please don't give up on her or abandon her, and continue to actively treat her.” This family member can be reassured that palliative care constitutes active and appropriate ongoing treatment. The assertion also may stem from guilt over an unresolved conflict with the patient or may be a symptom of a dysfunctional relationship with the sibling who wishes her mother to be allowed to die. These barriers can be identified and attempted to be overcome during a discussion. The theme of the discussion should be that the right course of action is defined as providing the type of treatment that their mother would want for herself in this sad situation.

The family member who states, “I know she would not want to keep living like this but I want you to insert a feeding tube because I would feel guilty for the rest of my life if I allowed her to die” needs counseling and emotional support. The neurologist can explain that the family member serving as a surrogate is not making an independent decision but is only communicating the decision that the patient would have made for herself. Therefore, the family member should feel absolved of guilt over the decision and good that he is following her mother's wishes. On the other hand, if the family member overrules the decision the patient would have made, he should feel guilty because he is responsible for preventing her treatment preferences from being fulfilled.

Neurologists need to take the lead in these discussions and emphasize that the most appropriate treatment at her stage of advanced dementia is palliative care and that the neurologist recommends not inserting a feeding tube. Family members' guilt over this course of action can be mitigated when they see that they are simply agreeing to the treatment plan recommended by her physician that follows prevailing medical practice standards.

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• American Academy of Neurology Ethics and Humanities Subcommittee. Ethical issues in the management of the demented patient. Neurology 1996;46:1180–
    • Casarett D, Kapo J, Caplan A. Appropriate use of artificial hydration and nutrition — fundamental principles and recommendations. N Engl J Med 2005;353:2607–2612.
      ©2009 American Academy of Neurology