Advance health care directive

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Advance health care directives, also known as advance directives or advance decisions, are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity. A living will is one form of advance directive, leaving instructions for treatment. Another form authorises a specific type of power of attorney or health care proxy, where someone is appointed by the individual to make decisions on their behalf when they are incapacitated. People may also have a combination of both. It is often encouraged that people complete both documents to provide the most comprehensive guidance regarding their care.[1] One example of a combination document is the Five Wishes advance directive, that is applicable in the USA.

Contents

[edit] Background

Advance directives came in to being as a response to increasing medical technology.[2],[3] Numerous studies have documented critical deficits in the medical care of the dying. Frequently, death in health care facilities – where 80% of all deaths occur[4],[5],[6] – is unnecessarily prolonged,[7] painful,[8] expensive,[9],[10] and emotionally burdensome to both patients and their families.[11],[12]

Aggressive medical intervention leaves nearly two million Americans confined to nursing homes,[13] and over 1.4 million Americans remain so frail as to survive only through the use of feeding tubes.[14] As many as 30,000 persons are kept alive in comatose and permanently vegetative states.[15],[16]

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.”[17] 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.[18],[19]

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.[20] The first formal response was the living will.

[edit] Living will

Refusal of treatment form

The living will is the oldest form of advance directive. It was first proposed by an Illinois attorney, Louis Kutner, in a law journal in 1969.[21] 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 themselves) and devised a way for an individual to speak to his or her health care desires when no longer able to express current health care 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.” [22]

A living will usually provides specific directives about the course of treatment that is to be followed by health care providers and caregivers. 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 only used if the individual has become unable to give informed consent or refusal (i.e., "individual health care instruction") 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 documents written in everyday language.[23]

Documents such as these proved to be very popular.[when?] In response to public needs, state legislatures soon passed laws in support of living wills in virtually every state in the union.[24]

However, by the late 1980's public advocacy groups became aware that many people remained unaware of advance directives[25] and even fewer actually completed them.[26],[27] In part, this was seen as a failure of health care providers and organizations to promote and support the use of these documents.[28] The public’s response was to press for further legislative support. The most recent result was the Patient Self-Determination Act of 1990,[29] which attempted to address this awareness problem by requiring health care institutions to better promote and support the use of advance directives.[30],[31]

However, as living wills began to better recognized, key deficits were soon discovered. Most living wills tended to be limited in scope[32] and often failed to fully address presenting problems and needs.[33],[34] Further, many individuals wrote out their wishes in ways that might conflict with quality medical practice.[35] 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[36] – the “health care proxy appointment” or “medical power of attorney.”

In recent years, Living Wills have been developed with different fields of application than merely for humans. For instance, you can now establish a living will for your pet (see, for example, www.PetLivingWills.com). Just as a living will for humans provides specific directives about the course of treatment that is to be followed by health care providers and caregivers when the person is not able to make them for themselves, a Pet Living Will allows a pet owner to establish instructions for their pet’s health care in an emergency. It tells pet care providers the outcomes the pet owner is willing to accept and the costs the pet owner is willing to incur. It protects the pet owner from the risk of having a pet care provider make the wrong decision.

[edit] Durable power of attorney and health care proxy

Main articles: Health care proxy and Power of attorney

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” (e.g., laws brought from England to the United States during the colonial period[37]). These early powers of attorney allowed an individual to name someone to act in their stead in legal or business matters. Over time these statutes were expanded to allow “durable” powers of attorney (also known as a lasting or enduring powers of attorney) meaning that the legal appointment could continue even if the individual who originally executed the document later lost capacity to make his or her wishes known.

Drawing upon these laws, “durable powers of attorney for health care” and “health care proxy appointment” documents were created and codified in law, allowing an individual to appoint someone to make health care decisions in their behalf if they should ever be rendered incapable of making their wishes known.[38] The appointed health care 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.[40]

Eventually, however, deficits 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.[41],[42],[43],[44],[45] In the absence of meaningful information, family and physician “guesswork” is found to be inaccurate as much as 76% of the time.[46],[47],[48],[49],[50],[51],[52],[53] 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. One of the earliest third-generation advance directives was the Values History,[54] created at the Institute of Public Law, University of New Mexico School of Law in 1988. It continues to be made available via the Hospice and Palliative Care Federation.[55] It is a “two-part advance directive instrument that elicits patient values about terminal medical care and therapy-specific directives.”[56] 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. One persistent criticism, however, is that it is too difficult to associate the elicited values and goals with medical care wishes.[57]

The next widely recognized third generation advance directive is the Medical Directive,[58],[59] created by Emanuel and Emanuel of Massachusetts General Hospital and Harvard Medical School. Also still available,[60] 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.[61],[62],[63] Primarily, it prompts individuals to make medical treatment decisions, which they are typically not equipped to make.[64]

Perhaps the best known third generation advance directive is the Five Wishes directive.[65] This document was developed in collaboration with multiple experts with funding from the Robert Wood Johnson foundation,[66] and is distributed by the Aging With Dignity organization. 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 40 states.[67] Criticisms include: 1) the document records “wishes” or preferences rather than “directives,” which some see as less compelling;[68] 2) the appointed agent authorities are less complete than those found in other directives;[69] 3) some of its definitions used have been criticized as inadequate;[70] 4) its address of pain management appears insufficient to meet American Medical Association standards;[71] 5) it is not a valid directive in many states;[72] and, 6) addressing only five key areas appears to be too limited for comprehensive planning.

The most recent third generation advance directive is the Lifecare Advance Directive.[73] In an attempt to be comprehensive and complete, the involved researchers reviewed more than 6,700 medical, legal, academic, and other literature sources in seeking essential inclusion material. Then the document was submitted for review by scores of medical and legal professionals. Finally, more than 900 general public research participants were involved in further study of the document – of which, 400 also participated in additional comparative research between multiple advance directive formats available in the United States. The findings indicated that, among the directives tested, this document best relayed treatment choices from the individual to an appointed representative, inspired greater confidence that the directives would be honored, and it led to the lowest use of burdensome medical treatments in poor outcome situations. The primary criticism is that the document may be too long and detailed for some users.

While some commentators suggest that any recording of one’s wishes is problematic,[74],[75] the preponderance of experts recommend the completion of an advance directive document – especially one that includes both a living will and a proxy designation.[76][77] 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,[78],[79],[80],[81] confusing,[82],[83],[84],[85],[86], 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.[87],[88],[89]

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 internationally renowned Hastings Center for Bioethics[90] explicitly refute this assertion, supporting their views with ample legal clarification.[91] 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.

[edit] Legal situation by country

[edit] 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.[citation needed]

[edit] 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 its 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 nor 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.[92][citation needed]

[edit] United Kingdom

In the UK, people may make an advance directive or appoint a proxy under the Mental Capacity Act 2005. This is only for an advanced refusal of treatment for when the person lacks mental capacity and must be considered to be valid and applicable by the medical staff concerned.[93]

[edit] United States

In the United States, most states recognize living wills or the designation of a health care proxy.[94] For example California does not recognize a living will but instead uses an Advanced Health Care Directive.[95] However, 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.[96] Surveys show that one-third of Americans say they've had to make decisions about end-of-life care for a loved one.[97]

[edit] See also

[edit] References

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  2. ^ Childress, J. Dying Patients. Who's in Control? Law, Medicine & Health Care. 1989;17(3):227-228.
  3. ^ Choice in Dying (now: Partnership in Caring). Choice in Dying: an historical perspective. CID 1035-30th Street, N.W. Washington, DC. 2007
  4. ^ American Medical Association. Council on Ethical and Judicial Affairs. Decisions Near the End of Life. Journal of the American Medical Association. 1992;267(16):2229-2233
  5. ^ Chambers, CV; Diamond, J; Perkel, R; Lasch, L. Relationship of advance directives to hospital charges in a Medicare population. Archives of Internal Medicine. 1994;154:541-547.
  6. ^ Dewar, MA. Advance Directives and Treatment Withdrawal: legal considerations. Journal of the Florida Medical Association. 1994;81(1):22-26.
  7. ^ Callahan, D. Setting Limits Simon & Schuster. 1983
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  11. ^ American Medical Association. Guidelines for the Appropriate Use of Do-Not-Resuscitate Orders. Council on Ethical and Judicial Affairs. Journal of the American Medical Association. 1991;265(14):1868-1871.
  12. ^ McGrath, RB. In-house Cardiopulmonary resuscitation -- after a quarter of a century. Annals of Emergency Medicine. 1987;16:1365-1368.
  13. ^ Wilkkes, JL. Nursing Home Nightmares. USAToday. August 20, 1996. 11A.
  14. ^ US Congress, Office of Technology Assessment. Life-Sustaining Technologies and the Elderly. OTA-BA-306. Washington, DC: US Gov't Printing Office. July, 1987.
  15. ^ American Academy of Neurology. Practice Parameters: Assessment and Management of Patients in the Persistent Vegetative State: Summary Statement. Neurology. 1995;45(5):1015-1018.
  16. ^ US Congress, Office of Technology Assessment. Life-Sustaining Technologies and the Elderly. OTA-BA-306. Washington, DC: US Gov't Printing Office. July, 1987.
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  20. ^ Choice in Dying (now: Partnership in Caring). Choice in Dying: an historical perspective. CID 1035-30th Street, N.W. Washington, DC. 2007
  21. ^ Kutner, L. The Living Will: a proposal. Indiana Law Journal. 1969;44(1):539-554.
  22. ^ Alexander, G.J. Time for a new law on health care advance directives. Hastings Center Law Journal. 1991;42(3):755-778.
  23. ^ http://pub.ucsf.edu/today/cache/feature/200710312.html
  24. ^ American Bar Association. Patient Self-Determination Act: State Law Guide. American Bar Association Commission on Legal Problems of The Elder. August 1991.
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  28. ^ Johnston, SC; etal. The discussion about advance directives: patient and physician opinions regarding when and how it should be conducted. Archives of Internal Medicine. 1995;155:1025-1030.
  29. ^ 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.
  30. ^ American Bar Association. Patient Self-Determination Act: State Law Guide. American Bar Association Commission on Legal Problems of The Elder. August 1991.
  31. ^ Omnibus Reconciliation Act of 1990
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  34. ^ 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.
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  37. ^ http://dictionary.reference.com/browse/common%20law
  38. ^ American Bar Association. Patient Self-Determination Act: State Law Guide. American Bar Association Commission on Legal Problems of the Elderly. August 1991.
  39. ^ Ibid.
  40. ^ Ibid.
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  43. ^ Emanuel, LL; Emanuel, EJ. Advance directives: what have we learned so far? Journal of Clinical Ethics. 1993;4:8-16.
  44. ^ High, DM: Turner, HB. Surrogate decision-making: the elderly's familial expectations. Thoretical Medicine. 1987;8:303-320.
  45. ^ High, DM. All in the family: extended autonomy and expectations in surrogate health care decision-making. Gerontologist. 1988;28(Suppl):S46-S51.
  46. ^ Diamond E; et al. Decision-making ability and advance directive preferences in nursing home patients and proxies. Gerontologist. 1989;29:622-26.
  47. ^ Emanuel LL; Emanuel EJ. Decisions at the end of life: guided by communities of patients. Hastings Center Report. 1993;23(5):6-14.
  48. ^ Hare, J; etal. Agreement between patients and their self-selected surrogates on difficult medical decisions. Archives of Internal Medicine. 1992;152(5):1049-54.
  49. ^ Ouslander, J; etal. Health care decisions made by frail elderly and their potential proxies. Gerontologist. 1988;28:103A-104A.
  50. ^ Seckler AB, Meier DE, Mulvihill M, Cammer Paris BE. Substituted judgment: how accurate are proxy predictions? Annals of Internal Medicine. 1991;115:92-98.
  51. ^ Tomlinson, T; Howe, K; Notman, M; Rossmiller, D. An empirical study of proxy consent for elderly persons. Gerontologist. 1990;30:54-61.
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  53. ^ Zweibel, NR; Cassel, CK. Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist. 1989;29:615-21.
  54. ^ http://www.hospicefed.org/hospice_pages/valuesform.htm
  55. ^ http://www.hospicefed.org/hospice_pages/values.htm
  56. ^ Doukas, DJ; McCullough, LB. The values history: the evaluation of the patient's values and advance directives. Journal of Family Practice. 1991;32:145-53.
  57. ^ Eisendrath, S; Jonsen, A. (1983). The living will – help or hindrance? Journal of the American Medical Association. 249:2054-58.
  58. ^ Emanuel, LL; Emanuel, E. The medical directive: A new comprehensive advance care document. Journal of the American Medical Association, 1989;261(22), 3288-93.
  59. ^ Sachs, GA; Cassell, CK. The medical directive. Journal of the American Medical Association. 1990;267(16):2229-33.
  60. ^ http://www.medicaldirective.org/
  61. ^ Brett, AS. Limitations of listing specific medical interventions in advance directives. Journal of the American Medical Association. 1991;266:825-28.
  62. ^ Sachs, GA; Cassell, CK. The medical directive. Journal of the American Medical Association. 1990;267(16):2229-33.
  63. ^ Silverman, H; Vinicky, J; Gasner, M. Advance directives: implications for critical care. Critical Care Medicine. 1992;20(7):1027-1031.
  64. ^ Brett, AS. Limitations of listing specific medical interventions in advance directives. Journal of the American Medical Association. 1991;266:825-28.
  65. ^ http://www.agingwithdignity.org/5wishes.html
  66. ^ http://www.rwjf.org/
  67. ^ http://www.agingwithdignity.org/5wishes.html
  68. ^ Annas, George J. The Health Care Proxy and the Living Will. New England Journal of Medicine. 1991;324(17 25 Apr):1210
  69. ^ Strengthening Advance Directives: Overcoming Past Limitations Through Enhanced Theory, Design, and Application. Lifecare Publications. 2008
  70. ^ http://www.livingwills-freelegal.org/Five-Wishes-Living-Will.html
  71. ^ American Medical Association. (1988). Council on Ethical and Judicial Affairs. Euthanasia: Report C. In: Proceedings of the House of Delegates of the AMA; June 1988: Chicago, Ill. Pp. 258-60.
  72. ^ http://www.agingwithdignity.org/5wishes.html
  73. ^ http://www.lifecaredirectives.com
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  75. ^ Lynn, J. Why I don't have a living will. Law, Medicine & Health Care. 1991;19(1-2):101-04.
  76. ^ Annas, George J. The Health Care Proxy and the Living Will. New England Journal of Medicine. 1991;324(17 25 Apr):1210.
  77. ^ Silverman H, Vinicky J, Gasner M. Advance directives: implications for critical care. Critical Care Medicine. 1992;20(7):1027-1031.
  78. ^ Bok, S. Personal directions for care at the end of life. New England Journal of Medicine. 1976:295;367.
  79. ^ Colin, BD. Living Choice. Health. November 1986. pg. 72.
  80. ^ Colvin, ER; Hammes, BJ. If only I knew: a patient education program on advance directives. American Nephrology Nurses Association Journal. 1991;18)6)557-560.
  81. ^ Silverman, H; Vinicky, J; Gasner, M. Advance directives: implications for critical care. Critical Care Medicine. 1992;20(7):1027-1031.
  82. ^ Annas, GJ. The Health Care Proxy and the Living Will. New England Journal of Medicine. 1991;324(17 25 Apr):1210.
  83. ^ Emanuel, LL; Emanuel, EJ. Decisions at the end of life: guided by communities of patients. Hastings Center Report. 1993;23(5):6-14.
  84. ^ Ewer, MS; Taubert, JK. Advance directives in the intensive care unit of a tertiary cancer center. Cancer. 1995;76:1268-74.
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  86. ^ Schneiderman, LJ; etal. Relationship of general advance directive instructions to specific life-sustaining treatment preferences in patients with serious illness. Archives of Internal Medicine. 1992(10):2114-22.
  87. ^ Gamble, ER; etal. Knowledge, attitudes and behavior of elderly persons regarding living wills. Archives of Internal Medicine. 1991;151:277-80.
  88. ^ High, DM. All in the family: extended autonomy and expectations in surrogate health care decision-making. Gerontologist. 1988;28(suppl):S46-S51.
  89. ^ Tyminski MO. The current state of advance directive law in Ohio: more protective of provider liability than patient rights. Journal of Law and Health. 2004-2005;19(2):411-49.
  90. ^ http://www.thehastingscenter.org/
  91. ^ Wolf, SM. Honoring broader directives. Hastings Center Report. 1991;21(5):S8-S9.
  92. ^ Site of the Swiss government on the intended new law
  93. ^ Johnston, Carolyn; Liddle, Jane (2007). "The Mental Capacity Act 2005: a new framework for healthcare decision making". Journal Medical Ethics 33: 94–97. doi:10.1136/jme.2006.016972. PMID 17264196. http://jme.bmj.com/cgi/reprint/33/2/94. 
  94. ^ publicagenga.org
  95. ^ http://info.sen.ca.gov/cgi-bin/waisgate WAISdocID=83225218909+0+0+0&WAISaction=retrieve
  96. ^ rwjf.org
  97. ^ publicagenda.org

http://www.tc.umn.edu/~parkx032/P-AD.html http://www.tc.umn.edu/~parkx032/B-AD.html

[edit] External links

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