The objective of this module is to provide information and generate discussion about ethical issues associated with end-of-life care. The main categories of issues addressed are as follows:
The primary intent of an advance directive is to ensure that an individual’s wishes are followed in the event that he/she is unable to participate in decision-making regarding his or her treatment. With regard to health care, a patient’s wishes would ideally be expressed in written form in order to eliminate confusion about what that person desires although it can be difficult to anticipate the types of situations and complications that may arise in the future. Hence, an advanced directive should be as clear as possible, covering a variety of possible situations. The author of a directive might want to consider what types of medical procedures would be desired if he/she were in a coma, in a persistent vegetative state, or had a terminal illness and were unable to communicate his or her wishes.
One type of advance directive is an instructional directive. In an instructional directive, an individual explicitly specifies the types of medical procedures that he/she desires in future situations. A living will is a type of instructional directive created to direct a health care team as to whether and/or when to start, continue, or halt procedures that are keeping a patient alive when he/she has lost the ability to communicate his or her desires.
Another type of advance directive is a proxy directive. A proxy directive explicitly designates another person to be a patient’s surrogate decision-maker. A patient typically appoints a proxy when he or she is preparing for an anticipated loss of the ability to form or to communicate his or her decisions regarding health care. A durable power of attorney for health care or health care surrogate is a type of proxy directive, which gives the surrogate the authority to make health care decisions for another individual. In Florida, the guidelines for choosing a health care surrogate, and the duties associated with fulfilling that role, are outlined in Florida Statute Chapter 765-Part II.
Although advance directives might help to resolve some situations concerning treatment decisions, a general problem in contemporary culture is that they are rarely used. Most elderly patients do not have directives, and, often, treatment preferences have not been discussed thoroughly between patients and their loved ones.
1) Does an advance directive need to be in written form to be binding? Not necessarily, a directive can be expressed orally. Yet being in written form can help to eliminate uncertainty and confusion about what a patient’s wishes are.
2) Even though a patient has an instructional directive, for what reason(s) might health care teams disregard it? An advanced directive can be problematic if it is not specific enough to cover a particular treatment decision. As a result, the health care team might be unsure about what the patient’s actual wishes would have been. Further, concern may arise about a directive if the health care team fears that it does not accurately reflect the patient’s current wishes. This type of situation can arise if a long amount of time has passed since the directive was written. Concern might also arise if there is reason to question whether the patient was competent when the directive was written. However, unless there arecompelling reasons to question whether a patient’s wishes are accurately recorded in his/her directive, the authority of an advance directive should be fully respected.
3) Does an advance directive have to be filled out for each medical facility that the patient travels to? It depends on the relevant state’s laws. According to Florida Statute Chapter 765.110, an advance directive should travel with a patient as part of his/her medical record.
4) What is a “DNR”? A DNR (or sometimes referred to as a DNRO) is a do not resuscitate order. It directs a health care team not to resuscitate a person in the event of cardiopulmonary arrest. Typically, a DNR is a physician’s order that is placed on a patient’s chart after consent has been given by the patient or the patient’s surrogate. According to Florida Statute Chapter 401.45(3)(a), a DNR order should be signed by both the physician and the patient, or, if the patient’s lacks capacity, by the patient’s surrogate decision-maker.
La Puma J. Are advanced directives the answer for the frail elderly? In Olsen E, Chichin ER, Libow LS, Eds. Controversies in Ethics in Long-Term Care. New York: Springer Publishing Company, 1995, pp: 1-14.
Silberfeld M, Nash C, Singer PA. Capacity to complete an advanced directive. Journal of the American Geriatrics Society. 1993;41:1141-1143.
US Living Will Registry (Stores advanced directives and makes them available for hospitals)
A patient, elderly or otherwise, can refuse any medical procedure as long as he/she is competent, adequately informed, and not coerced into making the decision. Assuming the aforementioned conditions have been met, a patient’s autonomy should be respected even if the health care team disagrees with the patient’s decision. However, it must be recognized that the patient, family members, and the health care team can be profoundly affected by a patient’s illness, especially during the dying process, so it is crucially important the appropriate consent is obtained before a medical procedure is refused or halted. The financial cost and the emotional/ psychology hardships placed on the patient and the patient’s family can at times lead to a decision that is not consistent with what the patient actually desires.
A patient’s valid refusal of medical proceduresmay involve either withholding or withdrawing treatment. Withholding involves the refusal of a medical procedure that has not yet been initiated. This may include the patient’s refusal to be placed on a respirator, to be given medication, or to have a feeding tube inserted. Withdrawing involves halting a medical procedure that has already been initiated. This may include the removal of a patient from a respirator, stopping medication, or taking out the patient’s feeding tube.
When medical procedures are withheld or withdrawn in order to allow a patient to die, the practice is called passive euthanasia. In contrast, physician-assisted suicide is when a physician intentionally prescribes a medication to a patient so that patient can use the medication to end his/her own life. Currently, physician-assisted suicide is only legal in the state of Oregon. Oregon's Death with Dignity Act delineates specific guidelines regulating the practice of assisted suicide, including that the patient must have a terminal illness and must initiate the request to die.
There are several legal cases that have established the ability of patients, or of patients’ surrogates, to refuse medical procedures. In the case of Karen Ann Quinlan, the New Jersey Supreme Court addressed the issue of whether life-sustaining procedures can be removed from an incompetent person. Karen’s father, Joseph Quinlan, sought to remove his daughter from a respirator. In 1976, the Court ruled that Karen’s privacy should be respected and that her father should be allowed to act on her behalf and remove the respirator.
In the case of Nancy Cruzan, the patient’s parents sought to remove a gastronomy tube providing food and hydration to their daughter who was in a persistent vegetative state. The Supreme Court of Missouri held that since there was no “clear and convincing evidence” of what Nancy would have wanted, the parents were not permitted to remove the feeding tube. In 1990, the U.S. Supreme ruled on the case and held that even though incompetent patients might not have the same rights as competent patients to refuse treatment, surrogate decision-makers can make treatment decisions for a patient if that decision is consistent with what the patient would have wanted. The Court did not permit the feeding tube to be removed, deciding that Missouri’s “clear and convincing” standard was constitutional and had not been met in this particular circumstance. Additional evidence was presented later that same year, however, and a Missouri Court allowed Nancy’s feeding tube to be withdrawn.
The Quinlan and Cruzan cases help to set the legal precedent that life-sustaining medical procedures can be refused even if a patient is not competent to voice the refusal. However, there continues to be vigorous and heated debate concerning the circumstances under which medical procedures should be removed from patients without their explicit consent.
In Florida, several legal cases have arisen, which have addressed the ability of patients to refuse treatment. In 1990, the Florida Supreme Court decided in the case of Estelle Browning that all patients, whether competent or incompetent, have the right to “choose or refuse medical treatment.” The Court held that the state constitution (Article I, Section 23) provided a legal basis for this right.
In 1994, the Florida Supreme Court ruled that a competent patient, Patricia Dubreuil, had the right to refuse a blood transfusion even though she did not have a terminal condition and there was uncertainty about who would raise her children. The Dubreuil Court, referring to the earlier decision in Browning, reaffirmed that the Florida Constitution permits a competent person to choose or refuse medical treatment.
With regard to elderly populations, there are a variety of factors that can complicate the consent process. There are several illnesses associated with aging that can compromise a patient’s ability to accept or refuse treatment. For instance, a patient who is suffering from dementia may appear lucid at times, but later on, he/she may lose decision-making capacity since it is typically a degenerative disease. On occasion, patients do change their minds with regard to treatment decisions. Some of these decisions are viewed skeptically by health care teams if they are a product of depression, anxiety, pressure from family members, or of a personality change resulting from illness. Moreover, when a patient starts to lose the capacity to make health care decisions, the patient’s family might put forward a treatment plan that is in its own best interest and not necessarily in the interest of the patient. For instance, the “horrors” associated with dementia might cause a patient’s family to try to halt health care and end the patient’s life prematurely. Thus, the health care team needs to aware of whether the decision being made is a product of what the patient would actually want.
1) Is there a morally significant difference between withholding and withdrawing treatment? In general, there is no morally significant difference between the two. Competent patients have the freedom to either refuse or halt any medical procedure. Typically, the motives for withholding or withdrawing care are similar. In the case of a dying patient, the motive is usually to alleviate suffering. Further, withholding or withdrawing care can have similar consequences, which in the case of a terminally ill patient, would be to allow the patient to die.
2) Under what conditions can medical care be withheld or withdraw from a patient who is not competent? In situations where a competent person has clearly and explicitly expressed his/her wishes at a prior time, through a living will for example, medical procedures should be withheld or withdrawn in accordance with those wishes. In the absence of the patient’s clearly stated wishes, laws vary according to state. In Florida, Chapter 765-Part IV outlines the circumstances where health care can be withheld or withdrawn from a patient who is not competent and lacks an advanced directive.
Callahan D. Treating people with dementia: When is it okay to stop? In Olsen E, Chichin ER, Libow LS, Eds. Controversies in Ethics in Long-Term Care. New York: Springer Publishing Company, 1995, pp: 109-126.
Cruzan v. Director, Missouri Department of Health, 110 S.Ct 284 (1990).
Fahs MC. Treating people with dementia: Can we afford not to stop? In Olsen E, Chichin ER, Libow LS, Eds. Controversies in Ethics in Long-Term Care. New York: Springer Publishing Company, 1995, pp: 127-142.
In Re Dubreuil, 629 So. 2d 819 ( Fla. 1994).
In Re Guardianship of Browning, 568 So. 2d 4, 11 ( Fla. 1990).
In Re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976).
Marcus EL. Refusal to eat in the elderly. Nutr Rev 1998;56(6):163-71.
“Futility” is a situation in which the health care team believes, according to its clinical judgment, that current or future medical procedures would be inappropriate for a patient because those procedures would offer little or no benefit. Health care teams try to make futility determinations by weighing anecdotal information, their clinical experience, and statistical evidence. Yet it can be profoundly difficult to define and assess futility. Some health care teams use computer programs such as the Acute Physiological, Age, and Chronic Health Evaluation (APACHE) system as a reference tool when determining futility. The APACHE system was designed to predict a patient’s prognosis by relying on outcomes from relevantly similar cases. However, there is some debate about the usefulness of such programs because of the variability between individual patients.
Medical technology has dramatically increased the life expectancy of patients. As a result, health care teams have had to grapple with the problem of treating a patient population that continues to grow older and older. Decisions about quality of life, for example, have become more common since medical technology can extend life in situations where it is unclear whether a previously competent patient would want treatment to be continued. Health care teams might disagree with families who want “everything done” when continuing treatment conflicts with their clinical judgment. A health care team would likely view additional treatment in a “futile” situation as morally and clinically inappropriate.
Although there are some clear-cut cases where health care teams would agree that aggressive treatment is inappropriate, there is little consensus on what constitutes futility. Disagreements about futility typically stem from the uncertainty about how an illness will progress in an individual patient to whether the patient would view his/her current quality of life as valuable. Different patients can have very different notions of what constitutes a good quality of life. Health care teams should be cognizant of this fact and find out what kinds of interactions the patient values before judging whether a treatment is futile.
1) Do physicians have the unilateral decision-making power to halt medical procedures against the wishes of a patient’s family if they believe those procedures are futile? It depends on a variety of factors. In the absence of the patient’s clearly expressed wishes, or if there is no advanced directive, physicians should seek the consent of the patient’s surrogate decision-maker before halting care. Yet when conflicts appear intractable concerning whether to continue “futile” treatment, the courts will probably be involved. Courts have offered diverging opinions concerning whether a physician must continue to provide what is deemed to be “futile” treatment. For instance, in the case of Barber v. Superior Court of California, the court decided that physicians do not have a duty to provide ineffective treatment. Yet there have also been cases, such as In Re Baby K, where courts have held that physicians do have an obligation to provide care even when doing so goes against their clinical judgment.
2) If the patient’s family demands a medical intervention that the health care team believes is futile, how should the conflict be resolved? There are several measures that may help to resolve the conflict. The health care team should discuss the patient’s condition with the patient’s family to make sure that the family clearly understands the medical opinion and recommendations that have been offered. During the discussion, the health care team might suggest that the family seek a second opinion to confirm the patient’s diagnosis and prognosis. If the family refuses to discuss the matter with the health care team and the situation appears intractable, the health care team or the patient’s family should consider contacting the ethics committee at the health care institution to assist with the situation.
Barber v. Superior Court of California, 147 Cal. App. 3d 1006 (1993).
In Re Baby K, 16 F.3d 590 (4th Cir. 1994).
Jecker NS. Futility and rationing. Am J Med 1992;92(2):189-196.
Rubin SB. When Doctors Say No: The Battleground of Medical Futility. Indianapolis: Indiana University Press, 1998.
Schneiderman LJ. Medical futility and aging: Ethical implications. Generations 1994;18(4):61-65.
The primary aim of palliative care is to alleviate a patient’s symptoms and pain. It is not designed to treat the underlying cause of an illness. Palliative care is one measure that is used to help make terminally ill patients more comfortable during the dying process. In Florida, a description of guidelines for palliative care and pain management is provided in Florida Statute Chapter 765.1103.
Ethical issues associated with palliative care typically stem from the level of pain that patients experience while suffering from an illness. There are complaints that health care teams do not treat pain adequately, which might occur for several reasons. In some situations, a health care team might be concerned that if too much pain medication is given, it might lead to a patient’s death. Also, a health care team might fear that patients will become addicted to pain medication if narcotics are prescribed or if an increased dosage of a drug is given. Further, critics of medical education suggest that health care teams are not educated thoroughly enough about pain in order to manage it adequately.
1) If the under-treatment of pain is a significant problem, what can be and has been done? There has been a movement to incorporate pain intensity as a fifth vital sign, making it part of the routine practice of health care teams to document the pain level that patients experience. Further, some health care professionals and medical organizations have sought to incorporate pain management as a more extensive part of health care education.
Beth Israel Medical Center’s Department of Pain Management and Palliative Care
Hurley AC, Mahoney MA, Volicer L. Comfort care in end-stage dementia: What to do after deciding to do no more. In Olsen E, Chichin ER, Libow LS, Eds. Controversies in Ethics in Long-Term Care. New York: Springer Publishing Company, 1995, pp: 73-90.
Memorial Sloan-Kettering Cancer Center: Pain Management
Hospice is a method for delivering palliative and supportive services to patients. The focus of hospice services typically relates to providing comfort care for dying patients during the last few months of their lives. Hospices can be located in a medical center, but most hospice care tends to be provided in the homes of patients. Historically, hospices were non-profit entities but some for-profit hospices have emerged over the last few years. In Florida, a description of hospice services is delineated in Florida Statute Chapter 400-Part VI.
1) Why would a dying patient want to consider hospice care and what kinds of services does hospice provide? Hospice is designed to provide patientswith the personalized attention they require, which can be especially important during the last few months of their lives. Besides providing pain and symptom relief, hospice can provide social, psychological, and spiritual support services for patients and patients’ families.
2) Why are some dying patients and their families reluctant to consider hospice care? Patients and their families might be hesitant to use hospice because they view it as a sign that they are giving up on life since hospice is not geared toward aggressively treating illness. Some families, for example, experience a profound feeling of guilt if they do not exhaust every treatment option even when additional treatment is inappropriate. Families should be aware that hospice can be tremendously beneficial to dying patients, providing them with the services they need during the last few months of life. Further, the decision to enroll in hospice can be changed if a different type of care is desired.
Volicer L, Hurley A, Eds. Hospice Care for Patients with Advanced Progressive Dementia. New York: Springer Publishing Company, 1998.
Hospice Web (requires log-in)
Barnard D. Ethical issues at the end of life: Death, dying, and the care of the aged. In The Clinical Care of the Aged Person New York: Oxford University Press, 1994, pp: 311-328.
Bioethics Resources on the Web: End-of-Life / Palliative Care (provided by the NIH)
The End of Life: Exploring Death in America (NPR series)
The Growth House (information about end-of-life)
Helme T. On euthanasia and other medical decisions in the terminal care of dementia patients. Int J Geriatr Psychiatry 1995;10(9): 727-33.
Last Acts (campaign to improve end-of-life care)
Post SG. The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying (2nd Edition). Baltimore: Johns Hopkins University Press, 2000.