An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. In the U.S. it has a legal status in itself, whereas in some countries it is legally persuasive without being a legal document.
A living will is one form of advance directive, leaving instructions for treatment. Another form is a specific type of power of attorney or health care proxy, in which the person authorizes someone (an agent) to make decisions on their behalf when they are incapacitated. People are often encouraged to complete both documents to provide comprehensive guidance regarding their care, although they may be combined into a single form. An example of combination documents includes the Five Wishes in the United States. The term living will is also the commonly recognised vernacular in many countries, especially the U.K.Docker, C. Advance Directives/Living Wills in: McLean S.A.M., "Contemporary Issues in Law, Medicine and Ethics," Dartmouth 1996 The legality of advance consent for advance healthcare directives depends on jurisdiction.
Background Advance directives were created in response to the increasing sophistication and prevalence of medical technology.Choice in Dying (now: Partnership in Caring). Choice in Dying: an historical perspective. CID 1035-30th Street, N.W. Washington, DC. 2007 Numerous studies have documented critical deficits in the medical care of the dying; it has been found to be unnecessarily prolonged,Callahan, D. Setting Limits Simon & Schuster. 1983 painful, expensive, and emotionally burdensome to both patients and their families.
Living will
The living will is the oldest form of advance directive. It was first proposed by an Illinois attorney, Luis Kutner, in a speech to the Euthanasia Society of America in 1967Benzenhöfer, U, Hack-Molitor, G (2009). Luis Kutner and the development of the advance directive (living will). Frankfurt (Main). . and published in a law journal in 1969. Kutner drew from existing estate law, by which an individual can control property affairs after death (i.e., when no longer available to speak for himself or herself) and devised a way for an individual to express their health care desires when no longer able to express current healthcare wishes. Because this form of "will" was to be used while an individual was still alive (but no longer able to make decisions), it was dubbed the "living will". The U.S. Patient Self-Determination Act (PSDA)Patient Self-Determination Act U.S.C.A. 1395cc & 1396a, 4206-4207, 4751, Omnibus Budget Reconciliation Act of 1990, P.L:.b 101-508 (101ST Cong. 2nd Sess. Nov. 5, 1990) (West Supp., 1991). went into effect in December 1991 and required healthcare providers (primarily hospitals, nursing homes, and home health agencies) to give patients information about their rights to make advance directives under state law.Docker, C. Advance Directives/Living Wills in: McLean S.A.M., Contemporary Issues in Law, Medicine and Ethics," Dartmouth 1996:182.
A living will usually provides specific directives about the course of treatment healthcare providers and caregivers are to follow. In some cases a living will may forbid the use of various kinds of burdensome medical treatment. It may also be used to express wishes about the use or foregoing of food and water, if supplied via tubes or other medical devices. The living will is used only if the individual has become unable to give informed consent or refusal due to incapacity. A living will can be very specific or very general. An example of a statement sometimes found in a living will is: "If I suffer an incurable, irreversible illness, disease, or condition and my attending physician determines that my condition is terminal, I direct that life-sustaining measures that would serve only to prolong my dying be withheld or discontinued."
More specific living wills may include information regarding an individual's desire for such services such as analgesia (pain relief), antibiotics, hydration, feeding, and the use of ventilators or cardiopulmonary resuscitation. However, studies have also shown that adults are more likely to complete these documents if they are written in everyday language and less focused on technical treatments.
However, by the late 1980s, public advocacy groups became aware that many people remained unaware of advance directives and even fewer actually completed them.Anthony, J. Your aging parents: document their wishes. American Health. May 1995. pp. 58-61, 109. In part, this was seen as a failure of health care providers and medical organizations to promote and support the use of these documents. The public's response was to press for further legislative support. The most recent result was the Patient Self-Determination Act of 1990,Omnibus Reconciliation Act of 1990 [including amendments commonly known as The Patient Self-Determination Act]. Sections 4206 and 4751, P.L. 101-508. Introduced as S. 1766 by Senators Danforth and Moynihan, and HR 5067 by Congressman Sander Levin. Signed by the President on November 5, 1990; effective beginning December 1, 1991. which attempted to address this awareness problem by requiring health care institutions to better promote and support the use of advance directives.Omnibus Reconciliation Act of 1990.
Living wills proved to be very popular, and by 2007, 41% of Americans had completed a living will.Charmaine Jones, With living wills gaining in popularity, push grows for more extensive directive, Crain's Cleveland Business, August 20, 2007. In response to public needs, state legislatures soon passed laws in support of living wills in virtually every state in the union.American Bar Association. Patient Self-Determination Act: State Law Guide. American Bar Association Commission on Legal Problems of The Elder. August 1991.
However, as living wills began to be better recognized, key deficits were soon discovered. Most living wills tended to be limited in scope and often failed to fully address presenting problems and needs.Hastings Center. Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying: a report by the Hastings Center. Briarcliff Manor, NY: Indiana University Press. 1987. Further, many individuals wrote out their wishes in ways that might conflict with quality medical practice. Ultimately, it was determined that a living will alone might be insufficient to address many important health care decisions. This led to the development of what some have called "second generation" advance directives – the "health care proxy appointment" or "medical power of attorney."
Living wills also reflect a moment in time, and may therefore need regular updating to ensure that the correct course of action can be chosen.
Healthcare proxy
Power of attorney statutes have existed in the United States since the days of "common law" (i.e., laws brought from England to the United States during the colonial period). These early powers of attorney allowed an individual to name someone to act in their stead. Drawing upon these laws, "durable powers of attorney for health care" and "healthcare proxy appointment" documents were created and codified in law, allowing an individual to appoint someone to make healthcare decisions in their behalf if they should ever be rendered incapable of making their wishes known.American Bar Association. Patient Self-Determination Act: State Law Guide. American Bar Association Commission on Legal Problems of the Elderly. August 1991. People will normally benefit from having both a durable power of attorney and a healthcare proxy.
A healthcare proxy document appoints a person, the proxy, who can make decisions on behalf of the granting individual in the event of incapacity. The appointed healthcare proxy has, in essence, the same rights to request or refuse treatment that the individual would have if still capable of making and communicating health care decisions. The appointed representative is authorized to make real-time decisions in actual circumstances, as opposed to advance decisions framed in hypothetical situations, as might be recorded in a living will. The healthcare proxy was rapidly accepted within the U.S. and authorizing legislation was soon enacted in most states.
One problem with a conventional healthcare proxy is that it may not be possible for the appointed proxy to determine what care choices the individual would have made if still capable, as healthcare proxies may be too vague for meaningful interpretation. While a study comparing next-of-kin decisions on behalf of an incapacitated person, (who later recovered) found that these surrogates chose correctly 68% of the time overall.
Values-based directives
One alternative to a conventional healthcare proxy is the values history, a "two-part advance directive instrument that elicits patient values about terminal medical care and therapy-specific directives."Doukas DJ, McCullough LB, "Assessing the Values History of the Aged Patient Regarding Critical and Chronic Care," in The Handbook of Geriatric Assessment. Eds. Gallo JJ, Reichel W, Andersen LM, Rockville, MD: Aspen Press, 1988:111-124. The goal of this advance directive is to move away from a focus on specific treatments and medical procedures to a focus on patient values and personal goals.Lambert P, Gibson, JM, Nathanson, P. The Values History: An Innovation in Surrogate Medical Decision-Making, Med. & Health Care, 202-212 (1990)
Studies suggest that values regarding financial and psychological burden are strong motivators in not wanting a broad array of end-of-life therapies.
Another alternative to a conventional healthcare proxy is the medical directive, a document that describes six case scenarios for advance medical decision-making. The scenarios are each associated with a roster of commonly considered medical procedures and interventions, allowing the individual to decide in advance which treatments are wanted or not wanted under the circumstances.
A study conducted to address concerns that a non-statutory advance directive might leave an incapacitated person with a document that may not be honored found that they are generally accepted.
Psychiatric advance directives A psychiatric advance directive (PAD), also known as a mental health advance directive, is a written document that describes what a person wants to happen if at some time in the future they are judged to have a mental disorder in such a way that they are deemed unable to decide for themselves or to communicate effectively.
A PAD can inform others about what treatment they want or do not want from psychiatrists or other mental health professionals, and it can identify a person to whom they have given the authority to make decisions on their behalf. A mental health advance directive is one kind of advance health care directive.
Legal foundations
Psychiatric advance directives are legal documents used by persons currently enjoying legal capacity to declare their preferences and instructions for future mental health treatment, or to appoint a surrogate decision maker through Health Care Power of Attorney (HCPA), in advance of being targeted by coercive mental health laws, during which they may be stripped of legal capacity to make decisions."Advance Directives for Mental Health Treatment" Debra S. Srebnik and John Q. La Fond Psychiatric Services, Volume 50, Number 7: 919 - 925, July 1999