Advance directives

ALSO KNOWN AS: Living wills, durable powers of attorney for health care (DPOA), do-not-resuscitate (DNR) orders

DEFINITION: Advance directives are written instructions in the form of legal documents that allow people to communicate their desires about medical care and treatment if they cannot speak for themselves due to a terminal condition. Patients with advanced cancer may use them to allow their wishes to be known and followed.

Purposes: Advance directives are designed to allow competent patients an opportunity to express their wishes for future health decisions in the event that they are unable to participate in medical decision-making because of their poor state of health. Advance directives take the pressure off family and friends by letting them know what care and services the cancer patient prefers and what treatment the patient would refuse in the event that communication is not possible. The patient can also designate a person or persons to make decisions. In families in which there is disagreement about what an ill relative would prefer, the advance directive provides clarification. If there is no advance directive and the patient becomes incapacitated with no surrogate designated, state law will dictate the order of surrogate decision makers, usually other family members. By designating a surrogate decision maker, the patient’s choice supersedes that of the state. This is particularly valuable for people without close family or in nontraditional relationships.

Advance directives are important because complex choices about end-of-life care are difficult and can seem overwhelming if someone close to the decision-maker is involved. Avoiding these decisions during healthy times will place a heavy burden on family and friends later. Communicating wishes about end-of-life care will ensure that the cancer patient’s wishes are respected.

Types: Advance directives emerged in the late 1960s and early 1970s as a major social and medical phenomenon resulting from the conflict between professional ethics based on the Hippocratic oath and the physician’s duty to benefit the patient according to the physician’s own ability and judgment and the patient’s autonomy. In Schloendorff v. Society of New York Hospital (1914), the Supreme Court ruled that patients were entitled to complete information about their illness and shared decision-making. The Patient Self-Determination Act of 1991 mandated that all patients admitted to acute care hospitals, long-term care facilities, health maintenance organizations, and home care programs be informed about their rights under state law to participate in healthcare decision-making, including their right to have written directives.

Despite widespread media attention, the majority of seriously ill patients do not have a written advance directive. For those without directives, family members collaborate with a healthcare provider to make decisions generally reflective of substituted judgment or best-interest principles (that is, what the patient would have wanted based on previous statements and values). This approach, of course, is problematic because often, there is little evidence about the preferences of any particular patient.

Advance directives include living wills, durable powers of attorney for health care (DPOA), and do-not-resuscitate (DNR) orders. There are two broad categories of advance directives: instructive and proxy. Instructive directives allow an opportunity to express preferences regarding the provision of particular treatment options. Living wills are the most common examples of instructional directives in which the patient’s preferences are specified, but there are other types, such as no blood transfusion or no cardiopulmonary resuscitation (CPR) directives. The proxy directive, generally a for healthcare, allows the patient to designate a surrogate decision maker of the patient’s choosing. This surrogate makes healthcare decisions for the patient in the case of incapacity.

It should be noted that advance directives are applicable only in situations in which patients are unable to participate in their health care decision-making. The assessment of capacity for decision-making is sometimes difficult and may involve a psychiatric evaluation and even a legal determination. If a patient is competent and communicative, however, the advance directive will not apply.

A or surrogate is a person appointed to make a patient’s medical decisions if and when the patient is unable to do so. The durable for healthcare is the legal document that names the healthcare proxy. It should be signed, dated, witnessed, notarized, copied, and incorporated into the patient’s medical record. A copy should be placed in the chart and given to the patient’s physician and attorney. Advance directives should be reviewed periodically and kept current. Some people even take their directives with them when they travel. Advance directives remain in effect until they are revoked.

Conditions: Advance directives are recognized in all fifty states and can be considered legally binding, provided they are executed in accordance with state guidelines. Some directives are written only to apply in particular clinical situations, such as when the patient has a terminal type of cancer or an incurable illness (advanced or aggressive cancers would fit these categories). Ambiguous terms, such as “extraordinary means” and “unnaturally prolonging my life,” should be placed within the context of the patient’s values to be understood. Because these ambiguous terms necessitate interpretation by caregivers, revised state forms have attempted to overcome this problem by addressing specific interventions that are to be withheld in all circumstances (for example, blood transfusions, dialysis, ventilators and respirators, CPR, artificial nutrition and hydration, withholding of food and fluids, and organ and tissue donation). According to the American Cancer Society (ACS), by 2024, forty-six states had recognized Aging with Dignity's Five Wishes form, which names first-, second-, and third-choice agents, lists any desired limitations on medical treatments, addresses specific treatment preferences in various scenarios, discusses palliation options, and describes last wishes for loved ones.

It is important to understand that a decision not to receive “aggressive medical care” is not the same as withholding all medical care. A cancer patient can still receive antibiotics, nutrition and hydration, medication, radiation therapy, and pain management (palliative or comfort care). Another approach can provide instructions in the event of a specific circumstance or diagnosis (such as a prolonged state of unconsciousness, trauma, or a diagnosis of dementia). Some living wills state that patients do not want life-prolonging treatments if their condition necessitates constant care and supervision. Alternatively, others can state that patients wish their lives to be prolonged as long as possible.

Advance directives can be revised or revoked as long as the patient remains competent to participate in medical decisions. Decisions by competent patients always supersede written directives. If there is disagreement among family members about the interpretation or authority of a patient’s advance directive, the medical team or a medical ethicist should meet with the family, clarify, and attempt to resolve the issue.

The COVID-19 pandemic brought new exposure to advance directives, highlighting their importance amidst a global health crisis. Despite media campaigns by highly respected healthcare organizations like the Mayo Clinic, which provided templates and educational materials, only one-third of Americans over the age of eighteen had advance directives in place in 2024. 

Limitations: Living wills cannot possibly be made all-encompassing because of the great variability in end-of-life care. Pain alleviation or management is among the most controversial end-of-life issues. Despite the 2006 Supreme Court ruling in favor of Oregon's Death in Dignity Act, the role of lethal drugs in the management of end-of-life pain and discomfort remains contentious, with only ten states allowing assisted suicide for terminally ill patients as of 2024. That year, twelve additional states were exploring their own bills to allow physician-assisted suicide for terminally ill patients, while two, West Virginia and Kansas, were making the practice illegal. Cancer patients making or considering writing advance directives are encouraged to communicate their preferences with their medical providers and surrogate decision-makers. Moreover, the provisions of an advance directive may not be followed by emergency personnel responding to a medical emergency outside a healthcare facility such as a hospital.

Most states ensure that patients remain in charge of their medical care until at least two physicians declare them to be incapacitated. Healthcare providers may refuse to honor the patient’s stated wishes or decisions because of personal standards or institutional policies. If either is the case, it is up to the individual healthcare provider to inform the surrogate immediately and transfer the patient to another provider.

Bibliography

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“Advance Care Planning.” Mayo Clinic Health System, www.mayoclinichealthsystem.org/for-patients-and-visitors/advance-care-planning. Accessed 9 June 2024.

“Advance Directives - Managing Your Cancer Treatment.” American Cancer Society, www.cancer.org/cancer/managing-cancer/making-treatment-decisions/advance-directives.html. Accessed 9 June 2024.

Bedayn, Jesse. “'I'm Dying, You're Not': Those Terminally Ill Ask More States to Legalize Physician-assisted Death.” AP News, 12 Apr. 2024, apnews.com/article/medical-aid-dying-legal-physician-assisted-suicide-b67affd86c1d1ce99379ed34bdb2946b. Accessed 9 June 2024.

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“Managing Cancer Care - Advance Directives.” National Cancer Institute, 13 Aug. 2021, www.cancer.gov/about-cancer/managing-care/advance-directives. Accessed 9 June 2024.

Mappes, Thomas A., and David De Grazia. Biomedical Ethics. 6th ed. New York: McGraw, 2006.

Sass, Hans-Martin, Robert M. Veatch, and Ribito Kimura, eds. Advance Directives and Surrogate Decision Making in Health Care: United States, Germany, and Japan. Baltimore: Johns Hopkins UP, 1998.

Ulrich, Lawrence P. The Patient Self-Determination Act: Meeting the Challenges in Patient Care. Washington: Georgetown UP, 1999.

Weir, Robert F. Abating Treatment with Critically Ill Patients: Ethical and Legal Limits to the Medical Prolongation of Life. New York: Oxford UP, 1989.