Advance healthcare directive

An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal 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.[1] 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.[2]

Background

Advance directives were created in response to the increasing sophistication and prevalence of medical technology.[3][4] Of U.S. deaths, 25–55% occur in health care facilities.[5] Numerous studies have documented critical deficits in the medical care of the dying; it has been found to be unnecessarily prolonged,[6] painful,[7] expensive,[8][9] and emotionally burdensome to both patients and their families.[10][11]

Aggressive medical intervention leaves nearly two million Americans confined to nursing homes,[12] and over 1.4 million Americans remain so medically frail as to survive only through the use of feeding tubes.[13] As many as 30,000 persons are kept alive in comatose and permanently vegetative states.[13][14]

Cost burdens to individuals and families are considerable. A national study found that: “In 20% of cases, a family member had to quit work;” 31% lost “all or most savings” (even though 96% had insurance); and “20% reported loss of [their] major source of income.”[15] Yet, studies indicate that 70-95% of people would rather refuse aggressive medical treatment than have their lives medically prolonged in incompetent or other poor prognosis states.[16][17]

As more and more Americans experienced the burdens and diminishing benefits of invasive and aggressive medical treatment in poor prognosis states – either directly (themselves) or through a loved one – pressure began to mount to devise ways to avoid the suffering and costs associated with treatments one did not want in personally untenable situations.[4] The first formal response was the living will.

Living will

Refusal of treatment form

The living will is the oldest form of advance directive. It was first proposed by an Illinois attorney, Luis Kutner, in a law journal in 1969.[18] 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 his or her 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".[19] In the U.S., The Patient Self-Determination Act (PSDA)[20] 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.[21]

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.[22]

However, by the late 1980s, public advocacy groups became aware that many people remained unaware of advance directives[23] and even fewer actually completed them.[24][25] In part, this was seen as a failure of health care providers and medical organizations to promote and support the use of these documents.[26] The public’s response was to press for further legislative support. The most recent result was the Patient Self-Determination Act of 1990,[27] which attempted to address this awareness problem by requiring health care institutions to better promote and support the use of advance directives.[28][29]

Living wills proved to be very popular, and by 2007, 41% of Americans had completed a living will.[30] In response to public needs, state legislatures soon passed laws in support of living wills in virtually every state in the union.[28]

However, as living wills began to be better recognized, key deficits were soon discovered. Most living wills tended to be limited in scope[31] and often failed to fully address presenting problems and needs.[32][33] Further, many individuals wrote out their wishes in ways that might conflict with quality medical practice.[34] 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[31] – 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.

On July 28, 2009, Barack Obama became the first United States President to announce publicly that he had a living will, and to encourage others to do the same. He told an AARP town meeting, "So I actually think it's a good idea to have a living will. I'd encourage everybody to get one. I have one; Michelle has one. And we hope we don't have to use it for a long time, but I think it's something that is sensible."[35] The announcement followed controversy surrounding proposed health care legislation that included language that would permit the payment of doctors under Medicare to counsel patients regarding living wills, sometimes referred to as the "infamous" page 425.[36] Shortly afterwards, bioethicist Jacob Appel issued a call to make living wills mandatory.[37]

Durable power of attorney and healthcare proxy

Second generation advance directives

As before, the next generation advance directive was drawn from existing law – specifically from business law. 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).[38] 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.[39] 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.[39] The primary benefit of second-generation advance directives is that the appointed representative can make real-time decisions in actual circumstances, as opposed to advance decisions framed in hypothetical situations, as recorded in a living will. This new advance directive was heartily endorsed by the American public, and supporting legislation soon followed in virtually all states.[39]

Eventually, however, deficiencies in "second-generation" advance directives were also soon noted. Primarily, individuals faced problems similar to those that handicapped living wills – knowing what to tell the proxy decision-maker about one's wishes in a meaningful way. Studies found most of what appointed proxies are told is too vague for meaningful interpretation.[40][41][42][43][44] In the absence of meaningful information, family and physician "guesswork" is found to be inaccurate as much as 76% of the time.[41][45][46][47][48][49][50][51] 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.[52] This continuing problem led to the development of what might be called "third generation" advance directives.

Third generation advance directives

Third generation advance directives were designed to contain enriched content to assist individuals and their appointed agents, families, and physicians to better understand and honor their wishes. The first of the third-generation advance directives was the Values History by Doukas and McCullough, created at the Georgetown University School of Medicine, first published in 1988, and then more widely cited in an article in 1991.[53][54] The Values History is a "two-part advance directive instrument that elicits patient values about terminal medical care and therapy-specific directives." 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. Another values-based project was later published by Lambert, Gibson, and Nathanson at the Institute of Public Law, University of New Mexico School of Law in 1990.[55][56] It continues to be made available via the Hospice and Palliative Care Federation.[57] One persistent challenge of third generation-based values documents is to show a linkage between the elicited values and goals with medical care wishes, although studies have demonstrated that values regarding financial and psychological burden are strong motivators in not wanting a broad array of end-of-life therapies.[58]

The next widely recognized third generation advance directive is the Medical Directive,[59][60] created by Emanuel and Emanuel of Massachusetts General Hospital and Harvard Medical School. Also still available,[61] it is a six-page document that provides 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. Several criticisms regarding this advance directive have been expressed.[60][62][63] Primarily, it prompts individuals to make medical treatment decisions, which they are typically not equipped to make.[62]

Perhaps the best known third-generation advance directive is the Five Wishes directive.[64] This document was developed in collaboration with multiple experts with funding from the Robert Wood Johnson foundation,[65] and is distributed by the organization Aging with Dignity. The document was endorsed by Mother Teresa of the Sisters of Calcutta and by the Chief Justice of the Florida state supreme court. The document meets statutory criteria in 42 states.[64]

The most recent third-generation advance directive is the Lifecare Advance Directive.[66] In creating this document, researchers reviewed more than 6,500 articles from medical, legal, sociological, and theological sources. The conclusion was that advance directives needed to be based more on "health outcome states" than on rosters of medical treatments and legal jargon. Building upon the insights gleaned from the literature review, an advance directive document created, tested in a study involving nearly 1,000 participants, and then comparison tested against other popular advance directive forms. The results indicated greater patient/proxy decision-making accuracy, and superior comprehensive content as compared with other documents tested.[66] The primary criticism has been that it is very lengthy and tedious to complete.

While some commentators suggest that any recording of one's wishes is problematic,[62][67] the preponderance of experts recommend the completion of an advance directive document – especially one that includes both a living will and a proxy designation.[63][68] While most of the public continue to rely upon their state's standard directive format, research demonstrates that many of these documents are too jargon laden and vague,[63][69][70][71] confusing,[31][41][72][73][74] and incomplete to adequately capture an individual's wishes, and that they focus too much on the needs of medical and legal practitioners to the exclusion of the needs of patients.[75][76][77] Advance directive documents are increasingly available online.[78]

Some legal commentators have suggested that using a non-statutory advance directive will leave the user with a document that may not be honored. However, legal counsel for the Hastings Center for Bioethics[79] refute this assertion.[80] To make the best choice, individuals should consider reviewing several document styles to ensure that they complete the document that best meets their personal needs.

Note: Some of the countries listed below are in the European Union, where legal systems may vary considerably from those in the U.S. Country reports on advance directives[81] is a 2008 paper summarizing advance health care legislation in the European Union with a shorter summary for the U.S.; a 2009 paper also provides a European overview.[82]

Australia

The laws regarding advance directives, powers of attorney, and enduring guardianships vary from state to state. In Queensland, for example, the concept of an advance health directive is defined in the Powers of attorney act of 1998 and Guardianship and Administration act of 2000.[83] Tasmania has no specific legislation concerning advance healthcare directives.[84]

Canada

Health Canada – Canada's federal health agency – has acknowledged the need for a greater investment in palliative and hospice care as the country faces a rapidly growing population of elderly and terminally ill citizens.[85]

Much of the current focus in Canada is on advance care planning which involves encouraging individuals to reflect on and express their wishes for future care, including end-of-life care, before they become terminally ill or incapable of making decisions for themselves. A number of publicly funded initiatives exist to promote advance care planning and to encourage people to appoint "substitute decision makers" who make medical decisions and can give or withhold consent for medical procedures according to the patient's pre-expressed wishes when the patient becomes incapable of doing so themselves[86][87][88][89]

In 2008, The Advance Care Planning in Canada: A National Framework and Implementation Project was founded.[90] The goal was to engage healthcare professionals and educate patients about the importance of advance care planning and end of life care.

Polling indicates that 96% of Canadians think that having a conversation with a loved one about planning for the end of life is important. However, the same polls show that only about 13% have actually done so, or have created an advance care plan for themselves. [91]

A 2014 Ipsos Reid Survey[92] reveals that only about a third of Canadian doctors and nurses working in primary care feel comfortable discussing end of life issues with their patients. End-of-life issues in Canada have recently been highlighted due to the ongoing related debate about Physician assisted death in Canada. Former Federal Health Minister Rona Ambrose (July 15, 2013 to November 4, 2015) has stated: "I think the starting point for me is that we still don't have the best elderly care and palliative care yet… So let's talk about making sure we have the best end-of-life care before we start talking about assisted suicide and euthanasia."[93]

England and Wales

In England and Wales, people may make an advance directive or appoint a proxy under the Mental Capacity Act 2005. This is only for an advance refusal of treatment for when the person lacks mental capacity; to be legally binding, the advance decision must be specific about the treatment that is being refused and the circumstances in which the refusal will apply. To be valid, the person must have been competent and understood the decision when they signed the directive. Where the patient's advance decision relates to a refusal of life-prolonging treatment this must be recorded in writing and witnessed. Any advance refusal is legally binding providing that the patient is an adult, the patient was competent and properly informed when reaching the decision, it is clearly applicable to the present circumstances and there is no reason to believe that the patient has changed his or her mind. If an advance decision does not meet these criteria but appears to set out a clear indication of the patient's wishes, it will not be legally binding but should be taken into consideration in determining the patient's best interests.[94][95] In June 2010, the Wealth Management Solicitors, Moore Blatch, announced that research showed demand for Living Wills had trebled in the two years previous, indicating the rising level of people concerned about the way in which their terminal illness will be managed.[96] According to the British Government, every adult with mental capacity has the right to agree to or refuse medical treatment.[97] In order to make their advance wishes clear, people can use a living will, which can include general statements about wishes, which are not legally binding, and specific refusals of treatment called "advance decisions" or "advance directives".[98]

Germany

On 18 June 2009 the Bundestag passed a law on advance directives, applicable since 1 September 2009. Such law, based on the principle of the right of self-determination, provides for the assistance of a fiduciary and of the physician.

Italy

Italy currently lacks living will legislation, though there are laws that allow patients to refuse life-sustaining medical treatment.[99][100][101] Controversy over end-of-life care emerged in Italy in 2006, when a terminally ill patient suffering from muscular dystrophy, Piergiorgio Welby, petitioned the courts for removal of his respirator. Debated in Parliament, no decision was reached. A doctor eventually honored Welby's wishes by removing the respirator under sedation.[102] The physician was initially charged for violating Italy's laws against euthanasia, but was later cleared. Further debate ensued after the father of a 38-year-old woman, Eluana Englaro, petitioned the courts for permission to withdraw feeding tubes to allow her to die. Englaro had been in a coma for 17 years, following a car accident. After petitioning the courts for 10 years, authorization was granted and Englaro died in February 2009.[103] In May 2008, apparently as a result of the recent Court of Cassation's holding in the case of Englaro, a guardianship judge in Modena, Italy used relatively new legislation[104] to work around the lack of the advance directive legislation. The new law permitted a judicially appointed guardian ("amministratore di sostegno") to make decisions for an individual. Faced with a 70-year-old woman with end-stage Lou Gehrig's Disease who was petitioning the court (with the support of her family) to prevent any later use of a respirator, the judge appointed her husband as guardian with the specific duty to refuse any tracheotomy and/or respirator use if/when the patient became unable to refuse such treatment herself.[105]

The Netherlands

In the Netherlands, patients and potential patients can specify the circumstances under which they would want euthanasia for themselves. They do this by providing a written euthanasia directive. This helps establish the previously expressed wish of the patient even if the patient is no longer able to communicate. However, it is only one of the factors that is taken into account. Apart from the will in writing of the patients, at least two physicians, the second being totally unrelated to the first physician in a professional matter (e.g. working in another hospital, no prior knowledge of the medical case at hand), have to agree that the patient is terminally ill and that no hope for recovery exists.

Switzerland

In Switzerland, there are several organizations which take care of registering patient decrees, forms which are signed by the patients declaring that in case of permanent loss of judgement (e.g., inability to communicate or severe brain damage) all means of prolonging life shall be stopped. Family members and these organizations also keep proxies which entitle their holder to enforce such patient decrees. Establishing such decrees is relatively uncomplicated.

However, in Switzerland, a patient decree has, as of November 2008, no legally binding effects, whether concerning civil or criminal aspects. Such a decree is today merely viewed as representing the supposed will of the person with the incapability. There is, however, a revision of the Swiss Civil Code under way that aims to change this situation (intended to be article 360 of the Swiss Civil Code) by making the patient decree a legally binding document.[106]

United States

In the United States, all states recognize some form of living wills or the designation of a health care proxy.[107] California does not recognize a living will as such, but instead uses an Advance Health Care Directive.[108] A "report card" issued by the Robert Wood Johnson Foundation in 2002 concluded that only seven states deserved an "A" for meeting the standards of the model Uniform Rights of the Terminally Ill Act.[109] Surveys show that one-third of Americans say they have had to make decisions about end-of-life care for a loved one.[110]

In Pennsylvania on November 30, 2006, Governor Edward Rendell signed into law Act 169, that provides a comprehensive statutory framework governing advance health care directives and health care decision-making for incompetent patients.[111] As a result, health care organizations make available a "Combined Living Will & Health Care Power of Attorney Example Form from Pennsylvania Act 169 of 2006."

Several states offer living will "registries" where citizens can file their living will so that they are more easily and readily accessible by doctors and other health care providers. However, in recent years some of these registries, such as the one run by the Washington State Department of Health, have been shuttered by the state government because of low enrollment, lack of funds, or both.[112]

See also

References

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