This paper examines the ethical dimensions of advance directives — including living wills, durable power of attorney, and Do-Not-Resuscitate orders — in end-of-life medical care. It argues that a patient's advance directive, when legally executed, should be honored regardless of family or medical personnel objections. The paper explores the Patient Self-Determination Act, the tension between precedent autonomy and contemporaneous autonomy in dementia cases, intervention-based versus value-based approaches to end-of-life planning, and the practical challenges hospitals and families face when directives conflict with emotional responses or new medical knowledge. Recommendations from ethics committees and patient advocacy groups are also discussed.
Adults have both the right and the responsibility to make decisions concerning their final days in advance. Whether to decline life support if death is imminent, or if a coma becomes permanent, is typically an ethical position that a person has already formed. An adult who wishes to record such a decision can do so by creating a living will, a durable power of attorney for health care, or a directive appointing a health care representative. A physician may ask a patient to prepare such a document in advance and keep it on file. It is the central argument of this paper that a person's advance directive should be followed, no matter how difficult that may be for the family or for medical personnel.
Many health facilities recommend that individuals preparing advance directives ask themselves the following questions:
Who would you like to make treatment decisions for you if you become unable to do so? How do you feel about ventilators, surgery, resuscitation (CPR), drugs, or tube feeding if you were to become terminally ill — if you were unconscious and not likely to wake up, or if you were suffering from dementia? What kind of medical treatment would you want if you had a severe stroke or other condition that made you dependent on others for all your care? What mental, physical, or social abilities are important for you to enjoy living? Do you want to receive every treatment your caregivers recommend? (University of Michigan Health Systems, p. 1)
If a patient reaches a point where they can no longer make such decisions, an advance directive — if one exists — is called upon. The appointment of a person who holds durable power of attorney or serves as a health care representative reflects the patient's choice of someone they trust, who ideally shares their values regarding end-of-life care, to stand in their place when they can no longer direct their own care. This person is also directed to consult with the attending physician or physicians when circumstances are complex. In such cases, many physicians feel that if a patient has a reasonable chance of recovering and retaining quality of life, life support should be sustained. However, if quality of life would be significantly impaired, experienced physicians may counsel the health care representative to withdraw life support and allow natural death. Because relatives do not always share the patient's views on end-of-life matters, the appointment of a health care representative may extend to close friends or even a member of the clergy.
A living will is a legal document that specifies whether a person wishes to be sustained on artificial life support. It may also include the appointment of a trusted individual to make health care decisions on one's behalf if one is unable to do so. A Do-Not-Resuscitate (DNR) order may be incorporated into a living will and activated under specified circumstances.
In 1991, the U.S. government passed the Patient Self-Determination Act (PSDA), requiring all health care institutions that receive Medicare or Medicaid funding to provide patients with information about their state's laws and their rights to execute advance directives. The PSDA did not, however, require states to adopt or change existing laws. The information provided must include the institution's policy on withdrawing or withholding life-sustaining treatment. Violation of this law can result in the loss of federal funding for the institution.
An advance directive is a legal and binding contract, signed by the patient, and should not be set aside for emotional reasons. These documents exist precisely because a patient may face circumstances in which the choice between dying and living with terminal illness, severe pain, or extensive disability must be made. Living with serious handicaps so severe as to make life unbearable affects every aspect of the patient's existence and those around them. Spiritual questions, emotional suffering, and the prospect of living in constant pain or heavily medicated are all considerations that many people find intolerable. When prepared properly, an advance directive allows a person to decide in advance how their health care will be administered and can spare a grieving family from having to make heart-wrenching decisions that might later lead to guilt and recrimination.
When advance directives are fully legal — that is, signed while the person is of sound mind, before a notary public and witnesses — there is little basis for anyone to alter them. However, if advance directives are executed at the point of hospital admission and do not meet all legal requirements, family members may claim that the decisions were made when the person was not of sound mind and are therefore not legally binding. In such cases, family members may, and sometimes do, instruct medical personnel to keep the patient on life support.
There is some merit in the argument for sustaining life when decisions were made under the severe stress of illness — perhaps in the midst of fever and pain — since these conditions can generate an acute desire to die that might not persist once the patient recovers. In the throes of delirium or agonizing pain, a person may wish to be released from suffering by any means, including death. If that person subsequently recovers, they may go on to live a full and pain-free life. In such circumstances, the judgment of relatives, friends, and physicians who can assess the situation more clearly may be more reasonable than the patient's own wish expressed in extremis.
However, if relatives opt for extreme life-sustaining measures primarily to relieve their own potential guilt — rather than out of a genuine belief that recovery is possible — the reasonableness of that decision is compromised. This paper does not address psychiatric advance directives, as questions of who may decide for a person experiencing mental incapacity involve additional complexities and typically do not concern life-sustaining measures.
A particularly difficult scenario arises when a person suffering from a progressive condition such as dementia has made clear in their directive that they do not wish to continue living in that state, and then develops pneumonia or suffers an accident requiring hospitalization. Should the medical team treat the secondary condition, or honor the patient's original wish and allow them to die from that illness? The patient expressly stated they did not wish to continue in their current state, and many ethicists argue that this wish should be respected. Yet this is precisely the dilemma families face when admitting an elderly patient with dementia or Alzheimer's disease to hospital care.
The role of the patient's family, physicians, health aides, chaplains, administrators, and health educators is crucial in these circumstances. Few people have executed a formal advance directive or appointed a health care power of attorney by the time they are admitted to hospital with a debilitating condition. An informed consent form only documents that a conversation has taken place; it does not substitute for a fully prepared directive. In California, the state has consolidated statutes for advance directives and incorporated the best features of prior laws. A patient may appoint a power of attorney for health care or use a standardized form to state their wishes, including preferences about extreme life-sustaining measures, prolongation of life, and pain relief. An agent may be appointed to ensure these directives are carried out, and advance directives may also expressly authorize the use of extreme life-sustaining procedures.
As Sue Rubin has observed, "To love a person is to learn the song in his heart and to sing it when he has forgotten it" (Rubin, 2001). In other words, when a patient can no longer communicate their wishes, the advance directive — and the agent named in it — speaks for them.
"Autonomy conflicts in dementia patients' directives"
"Shift from intervention-based to values-based planning"
"Ethics committees, compliance failures, and physician pressures"
McGee, G. (1997). Dear Dax... Penn Bioethics, 2(4), Summer 1997.
Rubin, S. (2001). Medical ethics and the humanities in end-of-life care. San Diego Hospice. Ethics Videos on the Web. Retrieved March 8, 2008 at
University of Michigan Health System. (2008). Advance directives/living wills. University of Michigan Health System. Retrieved March 8, 2008 at
Weiler, K., Eland, J., & Buckwalter, K. C. (1996). Iowa nurses' knowledge of living wills and perceptions of patient autonomy. Journal of Professional Nursing, 12(4), 245–252.
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