Advance Directives

The movement toward greater patient participation in health care that began in the 1960s and 1970s focused increasing attention on patients' desire for control over nearly all aspects of medical care, including critical care.

Dramatic medical and technological advances further underscored the importance of planning ahead for end-of-life care. Baby boomers (the generation of people born between 1946 and 1964), on the threshold of aging and faced with caring for elderly parents, became increasingly aware of the need to make provisions for their own future medical treatment. Advance directives filled this need.

ADVANCE DIRECTIVES

What Are Advance Directives?

Advance directives are legal documents that help protect patients' rights of self-determination (the right to make one's own medical decisions, including the right to accept or refuse treatment). These documents are a person's requests concerning health care, should he or she be unable to do so when the need arises due to physical or mental disabilities. There are two main documents in an advance directive: a living will and a durable power of attorney for health care.

A living will is a legal document stating a person's wishes for dealing with life-sustaining medical procedures in case he or she is debilitated and cannot speak for him- or herself. A living will is different from a last will and testament. A last will and testament deals with property and comes into effect after a person has died. A living will deals with health and personal care and is in effect when a person is alive. A durable power of attorney, the other part of an advance directive, is a legal document in which one person gives another (called the agent or proxy) legal authority to act or speak on his or her behalf should he or she become debilitated and not able to make decisions on his or her own.

A Brief History of Advance Directives

In 1967 the Euthanasia Society of America and the attorney Luis Kutner (1908–1993), the cofounder of Amnesty International, devised the first living will. California was the first state to recognize the legality of living wills (1976) and the durable power of attorney for health care (1984). The California Natural Death Act of 1976 states that to preserve “dignity and privacy … any adult person may execute a directive directing the withholding or withdrawal of life-sustaining procedures in a terminal condition.” As of October 2007, all fifty states and the District of Columbia had laws recognizing the use of living wills and durable powers of attorney for health care, although the provisions of these laws varied from state to state. (See Table 7.1.)

LIVING WILLS

As mentioned previously, a living will is one part of an advance directive. It is a document that outlines a patient's preferences about end-of-life medical treatments in the event that he or she is unable to communicate or make his or her own decisions. Laws regulating living wills vary from state to state. For example, Abigail Petersen explains in “Survey of States' Health Care Decision-Making Standards” (BIFOCAL: Bar Associations in Focus on Aging and the Law, vol. 28, no. 4, April 2007) that in 2007 twenty-seven states placed limits on allowing the withdrawal of life support from pregnant patients. In the most restrictive states a living will request to withhold or withdraw life support would not be honored if the patient was a pregnant woman. In some states, however, pregnancy limitations were less restrictive. They might state, for example, that life support could be withdrawn from a pregnant patient, but only if she had made her wishes explicit in her living will to withdraw life support even if she were pregnant.

Living wills enable people to list the types of medical treatments they want or do not want. It is therefore important for an individual contemplating a living will to know what these treatments involve. Some examples of life-prolonging treatments patients should consider when preparing a living will include cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, and kidney dialysis.

An advance directive form is included in the model Uniform Health Care Decisions Act (UHCDA). This model law was approved by the National Conference of Commissioners on Uniform State Laws in 1993 to provide some consistency among state advance directives and remained a model law as of October 2007. Its advance directive form offers several options that include treatments to prolong life. (See Table 7.2.) The states whose advance directives were modeled on the UHCDA are noted in the column “type” in Table 7.1.

Another form, called “Five Wishes,” was developed in Florida by the nonprofit organization Aging with Dignity and is now distributed nationwide. The document probes legal and medical issues as well as spiritual and emotional ones. It even outlines small details, such as requests for favorite music to be played and poems to be read, and provides space for individuals to record their wishes for funeral arrangements. The document is relatively easy to complete because it uses simplified language rather than legal or medical jargon.

The 2007 edition of “Five Wishes” met living will or advance directive criteria in forty states and the District of Columbia. (See Figure 7.1.) It did not meet advance directive criteria in ten states: Alabama, Indiana, Kansas, Kentucky, Nevada, New Hampshire, Ohio, Oregon, Texas, and Utah. Other forms were necessary in these states, although the “Five Wishes” document could still serve as a guide for family and physicians.

Pro-Life Alternative to Living Wills

The National Right to Life Committee (NRLC) opposes active and passive euthanasia and offers an alternative to the standard living will. Called the “Will to Live” (http://www.nrlc.org/euthanasia/willtolive/index.html), it does not consider artificial nutrition and hydration as forms of medical treatment, but as basic necessities for the preservation of life.

DURABLE POWER OF ATTORNEY FOR HEALTH CARE

Even though living wills provide specific directions about medical treatment, most apply only to limited circumstances, such as terminal illness or permanent coma. Living wills cannot address every possible future medical situation. Many medical treatments require decision making, such as surgical procedures, diagnostic tests, blood transfusion, the use of antibiotics, radiation therapy, and chemotherapy.

A durable power of attorney for health care, also called a medical power of attorney, addresses this need. It is the other part of an advance directive and is generally more flexible than a living will. It allows individuals to appoint proxies (agents) who will use their judgment to respond to unforeseen situations based on their knowledge of the patient and the patient's values and beliefs. (See Table 7.2.) The role of this agent or proxy begins as soon as the physician certifies that a patient is incompetent to make his or her own decisions.

Because there is no uniform advance directive statute nationally, the rights of health-care agents vary across states. Limits on agents' powers in each state and the District of Columbia as of October 2007 are shown in Table 7.1.

In the Absence of a Durable Power of Attorney for Health Care

Physicians usually involve family members in medical decisions when the patient has not designated a health-care proxy in advance. This person is called a surrogate. Many states have surrogate consent laws for this purpose. Some have laws that designate the order in which family members may assume the role of surrogate decision maker. For example, the spouse may be the prime surrogate, followed by an adult child, then the patient's parent, and so on.

Petersen indicates that in 2007 thirty-one states specified a decision-making standard for surrogates: either a substituted judgment standard, a best interests standard, or a combination of the two. A substituted judgment standard requires the surrogate to do what the patient would do in the situation were the patient competent. A best interests standard requires the surrogate to weigh health-care options for the patient and then decide what is in the patient's best interest.

ADDITIONAL INSTRUCTIONS IN ADVANCE DIRECTIVES

Artificial Nutrition and Hydration

Some living wills contain a provision for the withdrawal of nutrition and hydration. (See Table 7.2.) Artificial nutrition and hydration (ANH) are legally considered medical treatments and may, therefore, be refused. However, this form of treatment remains controversial in the right-to-die issue because food and liquid are the most basic forms of life sustenance, yet they are not usually needed by dying people and may even make them less comfortable. The unresolved problem is mirrored by the fact that not all states' advance directive statutes (laws) address this issue, and the ones that do show no consensus.

Petersen explains that one crux of the ANH controversy is the comfort care—pain relief mandate. She notes that in 2007 thirty-one states addressed comfort care and pain relief associated with life-sustaining procedures, including ANH. Thus, if ANH is seen as a procedure that comforts the dying patient or helps relieve pain, then it must be given regardless of what a healthcare proxy or surrogate wants. Two states, however, prohibit ANH if it is expected to cause pain. Again, the proxy or surrogate would have no say. Complicating

the matter even more, Petersen reports that six states require that ANH would have to be deemed to have no impact on the patient's illness or to potentially harm the patient before the agent or surrogate would be allowed to forgo ANH.

Relief from Pain

Some living wills also enable an individual to give instructions about the management of pain. Even though a number of studies show that pain is not the primary motivation for assisted suicide requests, many people

have seen family and friends suffer painful deaths, and they fear the same fate. Experts advise that advance directives should expressly indicate desires for pain control and comfort care, even when individuals have chosen to forgo life-sustaining treatments.

In the past, patient pain may not have been adequately treated because medical professionals lacked training or feared overprescribing pain medications. A variety of legislative and education initiatives by states and medical professional societies have dramatically improved pain management. The Federation of State Medical Boards has developed guidelines to help physicians use medication to manage pain safely and effectively. Special instruction in pain management for patients with life-limiting illnesses is now offered in many medical and nursing schools.

COMBINED ADVANCE DIRECTIVE LAWS

Some states have separate laws that govern living wills and durable powers of attorney for health care. The National Conference of State Legislatures (NCSL) and the Center to Improve Care of the Dying (CICD) believe that rather than having separate laws for these two documents, states should combine right-to-die laws into a single

statute. By October 2007 twenty-five states had done just that. (See Table 7.1.) Of these states, Alabama, Alaska, Delaware, Hawaii, Maine, Mississippi, and New Mexico had also adopted the UHCDA as a model.

The UHCDA has been recommended by the NCSL and the CICD as a model law because it is simple and comprehensive. It contains provisions governing living wills and durable powers of attorney, as well as limits on an agent's powers. The law permits instructions regarding one's future health care to be either written or oral. States using the law as a model may adopt the optional combined directive, which does not require witnesses to the document. It further enables individuals to express their preferences about organ donation and to designate a primary physician. (See Table 7.2.)

Along with showing the type of health-care power of attorney and combined advance directive legislation in each state, Table 7.1 shows other related information, including the comity provision. If a state has a comity provision, that means it has legislation specifically requiring that another state's living will, health-care power of attorney, or both, be honored within its borders.

IMPORTANCE OF COMMUNICATION FOR END-OF-LIFE CARE

The consideration of an advance directive should be the start of an ongoing discussion among the individual, family members, and the family doctor about end-of-life health care. Discussions about one's advance directive do not have to be limited to treatment preferences and medical circumstances. Sometimes knowing things such as the patient's religious beliefs and values can be important for the proxy when speaking for the patient's interests. The Center for Health Law and Ethics at the University of New Mexico has devised a values history form (http://hsc.unm.edu/ethics/pdf/Values_History.doc) to help people examine their attitudes about issues related to illness, health care, and dying. It may serve as a valuable tool to guide discussions between the patient and the proxy, as well as among family members.

When preparing an advance directive, it is vitally important for the family and proxy to fully understand the care and measures that are wanted. Even when a patient has a living will calling for no “heroic measures,” if the family demands such medical intervention, it is likely that the hospital or doctor will comply with the family's wishes rather than risk a lawsuit.

In “Discussions by Elders and Adult Children about End-of-Life Preparation and Preferences” (Preventing Chronic Disease: Public Health Research, Practice, and Policy, vol. 5, no. 1, January 2008, http://www.cdc.gov/pcd/issues/2008/jan/07_0141.htm), Anne P. Glass and Lusine Nahapetyan conducted in-depth interviews with older adults about their end-of-life decisions and with younger adults about their parents' end-of-life decisions to determine factors that helped and hindered discussions among family members regarding end-of-life preparation and preferences. Of the older adult participants in the study, just over half had discussed these topics with their adult children. Of the younger participants, two-thirds had discussed these topics with their parents.

Glass and Nahapetyan determine that fear of death, avoiding talking about death, trust in others to make decisions, family dynamics, and uncertainty about preferences were factors that impeded family discussions about end-of-life preparation and preferences. Factors that facilitated discussion were an acceptance of death, experience with death, religion, or spirituality, and a desire to help the family. The researchers also explain that approaching the topic in a casual manner helped families. An indispensable strategy to avoid confusion and argument over what parents said or wanted, and to avoid the need to get the family together in one place at one time, was for parents to write down their end-of-life preferences.

THE PATIENT SELF-DETERMINATION ACT

In 1990 Congress enacted the Patient Self-Determination Act (PSDA) as part of the Omnibus Budget Reconciliation Act of 1990. This legislation was intended to “reinforce individuals' constitutional right to determine their final health care.”

The PSDA took effect on December 1, 1991. It requires most health-care institutions, on admission, to provide patients with a summary of their health-care decision-making rights and to ask them if they have an advance directive. Health-care institutions must also inform the patient of their facility's policies with respect to honoring advance directives. The PSDA requires health-care providers to educate their staff and the community about advance directives. It also prohibits hospital personnel from discriminating against patients based on whether they have an advance directive, and patients are informed that having an advance directive is not a prerequisite to receiving medical care.

CHAPTER 7
ADVANCE DIRECTIVES

Every human being of adult years and sound mind has a right to determine what shall be done with his own body.

—Supreme Court Justice Benjamin Cardozo

The movement toward greater patient participation in health care that began in the 1960s and 1970s focused increasing attention on the desire for control over nearly all aspects of medical care, including critical care. Dramatic medical and technological advances further underscored the importance of planning ahead for end-of-life care. Baby boomers (the generation of people born between 1946 and 1964), on the threshold of aging and faced with caring for elderly parents, have become increasingly aware of the need to make provisions for their own future medical treatment. Some hope that executing advance directives will help protect their rights to self-determination (the right to make one's own medical decisions, including the right to accept or refuse treatments).

A BRIEF HISTORY OF ADVANCE DIRECTIVES

Advance directive is the general term that refers to a person's request (oral and/or written) concerning their health care, should he or she become incompetent. There are two categories of advance directives: living wills and durable power of attorney for health care. Many states have special forms or specific procedures for creating an advance directive. Some people think it is sufficient to tell a loved one or a physician what they desire. But the National Health Lawyers Association stresses that although courts have enforced oral instructions, and physicians often consider the information that family members offer about a patient's requests, the wishes of the terminally ill are more likely to be honored if they are written down.

In 1967 the Euthanasia Society of America and attorney Luis Kutner, cofounder of Amnesty International, devised the first living will (later called an advance directive). The Euthanasia Society of America, renamed in 1974 the Society for the Right to Die, merged in 1991 with Concern for Dying to become Choice in Dying (CID). CID had no official position on physician-assisted suicide; it advocated the right of individuals to make their own decisions about medical care at the end of life. Between 1967 and 1999, CID distributed more than ten million living wills.

California was the first state to recognize the legality of living wills (1976) and the durable power of attorney for health care (1984). The California Natural Death Act of 1976 states that to preserve "dignity and privacy … any adult person may execute a directive directing the withholding or withdrawal of life-sustaining procedures in a terminal condition."

All fifty states and the District of Columbia passed laws recognizing the use of living wills and durable power of attorney for health care, although the provisions of these laws vary from state to state. As of January 2004, 46 states and the District of Columbia had laws authorizing both living wills and the appointment of a health care proxy or agent. Alaska's law permits living wills only; even if a patient has a health care agent, that agent is not permitted to order the termination of life-sustaining treatment. While Massachusetts, Michigan, and New York laws only authorize the appointment of a health care agent, their laws do permit the inclusion of specific instructions about medical care at the end of life within the appointment of the agent. (See Figure 7.1.)

LIVING WILLS

A living will is a written advance directive that outlines a patient's preferences about end-of-life medical treatments in the event that he or she is unable to communicate or make his or her own decisions. It is sometimes called a directive or a declaration. Laws regulating living wills vary from state to state. For example, in 31 states a pregnant woman's living will cannot be honored if it asks for the withholding or withdrawal of life support because of restrictions in those states' statutes. (See Figure 7.2.)

Living wills enable people to list the types of medical treatments they want or do not want. It is therefore important for an individual contemplating a living will to know what these treatments involve. Some examples of life-prolonging treatments patients should consider when preparing a living will include cardiopulmonary resuscitation (CPR), mechanical ventilation, artificial nutrition and hydration, and kidney dialysis.

Some Are Opposed to Nontreatment Directives

Some people point out that discussions about advance directives focus on discontinuing or withholding life-sustaining treatments. Wesley J. Smith, in Forced Exit: The Slippery Slope from Assisted Suicide to Legalized Murder (New York: Times Books, 1997), notes that some advance directives only list one choice: nontreatment. According to Smith, if a person chooses to fight for his or her life, that person may be faced with the daunting task of writing out detailed treatment instructions.

This need not be the case. An advance directive form included in the model Uniform Health Care Decisions Act (UHCDA) offers several options that include treatments to prolong life. (See Figure 7.3, Part 2: Instructions for Health Care.) This model law was approved by the National Conference of Commissioners on Uniform State Laws in 1993 to provide some consistency among state advance directives.

Another form, called "Five Wishes," was developed in Florida by a nonprofit organization called Aging with Dignity and is now distributed nationwide. The document probes legal and medical issues as well as spiritual and emotional ones. It even outlines small details, such as requests for favorite music to be played and poems to be read, and provides space for individuals to record their wishes for funeral arrangements. The document is relatively easy to complete since it uses simplified language rather than legal or medical jargon. As of June 2004, "Five Wishes" met living will or advance directive criteria in 35 states and the District of Columbia; in the other 15, specific forms were necessary, although the "Five Wishes" document can still serve as a guide for family and physicians.

Pro-Life Alternative to Living Wills

The National Right to Life Committee (NRLC) opposes active and passive euthanasia and offers an alternative to the standard living will. Called the "Will to Live," it does not consider artificial nutrition and hydration as forms of medical treatment but as basic necessities needed for the preservation of life.

IMPORTANCE OF COMMUNICATION

The consideration of an advance directive should be the start of an ongoing discussion among the individual, family members, and the family doctor about end-of-life health care. Discussions about one's advance directive need not be limited to treatment preferences and medical circumstances. Sometimes knowing things such as the patient's religious beliefs and values can be important for the proxy when speaking for the patient's interests. The Center for Health Law and Ethics at the University of New Mexico has devised a values questionnaire to help people examine their attitudes about issues related to illness, health care, and dying. It may serve as a valuable tool to guide discussions between the patient and the proxy, as well as among family members.

When preparing an advance directive, it is vitally important for the family and proxy to fully understand the care and measures that are wanted. Even when a patient has a living will calling for no "heroic measures," if the family demands such medical intervention, it is likely that the hospital or doctor will comply with the family's wishes rather than risk a lawsuit if the family demands such medical intervention.

Highlighting the need for communication, a 1998 study of 250 terminally ill patients and their families showed that only 66 percent of the families surveyed accurately predicted the level of treatment their dying family member would want. Researchers from the Georgetown University Center for Clinical Bioethics separately questioned the patient and the patient's likely surrogate about the treatment that the patient would desire in three different end-of-life scenarios. One-third of the surrogates chose differently than the patient, evenly divided between picking too much and too little treatment.

In the Absence of Advance Directives

Physicians usually involve family members in medical decisions when the patient has not designated a health care proxy in advance. Many states have family consent or surrogate consent laws for this purpose. (See Figure 7.4.) Some have laws that designate the order in which family members may assume the role of surrogates or decision makers. For example, the spouse may be the prime surrogate, followed by an adult child, then the patient's parent, etc.

ADDITIONAL INSTRUCTIONS IN ADVANCE DIRECTIVES

Artificial Nutrition and Hydration

Some living wills contain a provision for the withdrawal of nutrition and hydration. (See Figure 7.3, Part 2: Instructions for Health Care.) Artificial nutrition and hydration are legally considered medical treatments and may, therefore, be refused. But this form of treatment remains controversial in the right-to-die issue because food and drink are the most basic forms of life sustenance. The unresolved problem is mirrored in the fact that not all states' advance directive statutes address this issue. (See Figure 7.5 and Figure 7.6.)

Relief from Pain

Some living wills also enable an individual to give instructions about the management of pain. While a number of studies have shown that pain is not the primary motivation for assisted suicide requests, many people have seen family and friends suffer painful deaths, and they fear the same fate. Experts advise that advance directives should expressly indicate desires for pain control and comfort care, even when individuals have chosen to forego life-sustaining treatments.

In the past, patient pain may not have been adequately treated because medical professionals because they lacked training or feared overprescribing pain medications. A variety of legislative and education initiatives by states and medical professional societies have dramatically improved pain management. In 2000 the National Cancer Policy Board issued a report recommending additional funding for research for palliative care and encouraging physicians to redouble their efforts to relieve the pain and other symptoms of dying cancer patients. The Federation of State Medical Boards has developed guidelines to help physicians use medication to manage pain safely and effectively. Special instruction in pain management for patients with life-limiting illnesses is now offered in many medical and nursing schools.

Further pressure to improve pain management can come from patients and their families. In December 2000 a California jury held a physician liable for prescribing too little pain medication for a patient dying from lung cancer. The children of 85-year-old William Bergman sued his physician for elder abuse on the grounds that the doctor failed to prescribe strong enough medication to control their father's pain before, during, and after his hospitalization in 1998. The jury awarded the family $1.5 million, but to comply with the state limit on such awards, the sum was reduced to $250,000. Advocates for improved end-of-life care hoped the verdict would remind physicians about the importance of pain management.

DURABLE POWER OF ATTORNEY FOR HEALTH CARE

A durable power of attorney for health care, also called a medical power of attorney, designates a health care agent or proxy authorized to make medical treatment decisions on behalf of a patient who can no longer make these decisions for himself or herself. (See Figure 7.3, Part 1: Power of Attorney for Health Care.) The role of this agent or proxy begins as soon as the physician certifies that a patient is incompetent to make his or her own decisions. The agent's role may or may not be limited to end-of-life care.

Is a Durable Power of Attorney the Same as a Living Will?

While a living will provides specific directions about medical treatment, it cannot address every possible future medical situation. Most standard living wills apply only to limited circumstances, such as terminal illness or permanent coma. There are, however, many medical treatments that require decision making. Examples of these are surgical procedures, diagnostic tests, blood transfusion, the use of antibiotics, radiation therapy, and chemotherapy.

A durable power of attorney for health care is generally more flexible than a living will. It allows individuals to appoint proxies (agents) who will use their judgment to respond to unforeseen situations based on their knowledge of the patient and the patient's values and beliefs. Since there is no uniform advance directive statute nationally, the rights of health care agents vary across states. Limits on agent's powers in each state as of January 1, 2002, that were still valid in May 2004 are shown in Table 7.1.

ARE ADVANCE DIRECTIVES EFFECTIVE?

Some people are skeptical about the effectiveness of living wills. They claim that many living wills say very little about real-life clinical situations. Others feel that the average person cannot be expected to know the ramifications of different medical treatments, much less name them. The National Conference of State Legislatures (NCSL) and the Center to Improve Care of the Dying (CICD) agree. In State Initiatives in End of Life Care: Policy Guide for State Legislators (Washington, DC, June 1998) these groups reported that the standard forms used by most states do not encompass the wide range of scenarios that a patient may face, nor would it be realistic to try to do so. Many states use living will forms that contain vague language requiring a subjective interpretation.

The NCSL and the CICD believe that a written advance directive should ideally include both a living will and a durable power of attorney. Rather than having separate laws for these two documents, the NCSL and the CICD suggest that states should combine different right-to-die laws into a single statute. By the year 2002, 18 states had done just that. (See Table 7.1. The data in this table was still accurate as of May 2004.) Of these states, Alabama, Delaware, Hawaii, Maine, Mississippi, and New Mexico had adopted the Uniform Health-Care Decisions Act (UHCDA) as a model.

The UHCDA has been recommended by the NCSL and the CICD as a model law because it is simple and comprehensive. It contains provisions governing living wills and durable powers of attorney, as well as limits on an agent's powers. The law permits instructions regarding one's future health care to be either written or oral. States using the law as a model may adopt the optional combined directive, which does not require witnesses to the document. It further enables individuals to express their preferences about organ donation and to designate a primary physician. (See Figure 7.3, Parts 3 and 4.)

Along with showing the type of health care power of attorney and combined advance directive legislation in each state, Table 7.1 shows other related information, including the comity provision. If a state has a comity provision, it has legislation specifically requiring that another state's living will, a health care power of attorney, or both be honored within their borders.

Little Impact on End-of-Life Decision Making

In its publication Seven Deadly Myths: Uncovering the Facts about the High Cost of the Last Year of Life (Washington, DC, 1997), the Alliance for Aging Research found that even when patients have completed advance directives, these often have little influence on end-of-life decision-making. The Alliance observed that physicians often cannot predict with certainty that a given patient is at the end of his or her life. "Most advance directives embody the concept of not using life-sustaining measures when they would be futile. When physicians cannot predict futility, however, such instructions offer little guidance."

Advance Directives Lack Specificity

Joan M. Teno, et al., in "Do Advance Directives Provide Instructions that Direct Care?" (Journal of the American Geriatrics Society, vol. 45, no. 4, April 1997), investigated whether the content of advance directives contributes to their ineffectiveness. The researchers analyzed 688 advance directives collected from five hospitals.

Teno and her colleagues found that only 13 percent (90 advance directives) contained additional instructions beyond the general statement—not wanting treatments that would prolong death—found in standard living wills. Just 5 percent (36) gave specific instructions about the use of life-sustaining treatments, while 3 percent (22) mentioned foregoing life-sustaining treatments in the patient's current situation. The researchers pointed out that what is ordinarily at stake for very seriously or terminally ill patients is not whether efforts to prolong life should cease, but exactly which efforts and when.

The NCSL and CICD have recommended to state legislators that any advance directive form adopted be modifiable. As the health care environment continues to evolve, standard advance directives may not be applicable to specific medical conditions. Not only should advance directives be flexible enough to allow for changes in a patient's medical condition, but states should also educate the public, as was initially intended in the Patient Self-Determination Act of 1990.

THE PATIENT SELF-DETERMINATION ACT

In 1990 Congress enacted the Patient Self-Determination Act (PSDA) as part of the Omnibus Budget Reconciliation Act of 1990 (PL 101-508). This legislation was intended to "reinforce individuals' constitutional right to determine their final health care."

The PSDA took effect on December 1, 1991. It requires all health care providers participating in Medicare (a program of the federal government through which people age 65 and older receive health insurance) and Medicaid (a program run by the federal and state governments to provide health insurance to people younger than 65 years of age who cannot afford to pay for private health insurance) to provide all patients over age 18 with the following written information:

• The patient's rights under the law to participate in decisions about his or her medical care, including the right to accept or refuse treatments.
• The patient's right under state law to complete advance directives, which will be documented in his or her medical records.
• The health care provider's policies honoring these rights.

Providers include hospitals, nursing homes, home health care providers, hospices, and health maintenance organizations (HMOs), but not outpatient-service providers or emergency medical personnel. The PSDA requires health care providers to educate their staff and the community about advance directives. It also prohibits hospital personnel from discriminating against patients based on whether they have an advance directive. (Patients are informed that having an advance directive is not a prerequisite to receiving medical care.)

PSDA: The Right Idea at the Wrong Time?

The Institute of Medicine's Committee on Care at the End of Life believes that admission to a hospital or long-term care facility is not the appropriate time to question or advise patients about their end-of-life preferences. In Approaching Death (Washington, DC: National Academy Press, 1997), the Committee noted that the advance directive information required by the PSDA would be just one of many pieces of information given to patients during stressful situations. Patients may not only be seriously ill but also frightened and confused. Family members who receive the information may be too distraught or traumatized to fully understand the information imparted. Others may not respond well to discussions about death when they are feeling vulnerable.

The Committee believes that advance directives are best discussed before a medical crisis—when individuals, their families, and physicians can have a series of in-depth discussions. Since health status changes and perspectives

often change, the topics of discussion should be revisited. Health care providers must fulfill their responsibility to educate the community as required by the PSDA.

PSDA Has No Impact on Terminal Care

Despite the promise of greater patient participation in health care decisions through advance directives, the PSDA has not changed the way seriously ill patients die. Joan M. Teno, et al., in "Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention" (Journal of the American Geriatrics Society, vol. 45, no. 4, April 1997), found that having an advance directive did not always result in physician action honoring patients' treatment requests.

Although documentation in patients' charts of the existence of an advance directive increased from 6 to 35 percent, physicians did not seem to pay much attention to patients' written instructions. Almost half the patients who indicated refusal of CPR did not have a Do Not Resuscitate (DNR) notation in their medical charts. Moreover, despite increased efforts to foster communication among patients, families, and doctors, there was no improvement in following through with patients' directives.

Advance Directives

An advance directive is a statement that declares what kind of lifesaving medical treatment a patient wants after he or she has become incompetent or unable to communicate to medical personnel. Advance directives, which are recognized in every state, are a response to the increasing ability of physicians since the 1950s to delay death through an array of medical technology, such as respirators, feeding tubes, and artificial hydration. This ability to prolong life has led to the need for doctors, patients, and patients' families to make decisions as to whether such technology should be used, especially in those situations when the patient is either near death, comatose, or severely and chronically ill.

Advance directives are an outgrowth of the doctrine of "informed consent." This doctrine, established by the courts, holds that patients, and not their physicians, are responsible for making the final decision about what medical care they want after being provided with complete and accurate medical information. It represents a shift from an earlier more paternalistic model of the doctor-patient relationship in which the physician made most medical decisions. The doctrine is based on the principles of autonomy and self-determination, which recognize the right of individuals to control their own bodies. An advance directive is a way of recognizing this right prospectively by providing instructions in advance on what the patient would want after he or she is no longer able to communicate his or her decision.

Types of Advance Directives

There are two forms of advance directives: living wills and health care powers of attorney. A living will, so named because it takes effect while the person is still alive, is a written statement expressing whether or not a person wants to accept life-sustaining medical treatment and under what conditions. For example, a living will may state that a person wants a ventilator, but not a feeding tube, in the event of an irreversible or terminal illness. Many states also have Do Not Resuscitate laws, a narrowly tailored type of living will, that allows patients to indicate that they do not want cardiopulmonary resuscitation if they suffer cardiac arrest. These laws also protect health providers from civil or criminal liability when honoring advance directives.

A health care power of attorney, also known as a durable power of attorney or a proxy, provides for someone else, usually a family member or close friend, to make decisions for the patient when he or she is unable. It is broader than a living will because it includes all medical decisions, not just those pertaining to life-sustaining medical treatment. It does not require that the person be terminally ill or in a vegetative state before it is triggered. However, unlike a living will, a proxy may not contain specific instructions on a patient's willingness to accept certain life-sustaining treatment. Instead it is left up to the appointed family member or close friend to determine what the patient would want, based on what the patient has said in the past or the patient's overall life philosophy. For this reason, it is helpful to combine living wills and a power of attorney in one document. Every state has laws that provide for living wills, health care proxies, or both. These laws are commonly referred to as Natural Death Acts.

Advance directives do not have to be in writing and can include oral statements made to family, friends, and doctors before the patient became unable to make a decision regarding his or her medical care. Most states require that evidence concerning these statements be clear and convincing. In other words, they should not be "casual remarks" but "solemn pronouncements" that specifically indicate what type of life-sustaining treatments the patient wants, and under what conditions. Because such statements are open to interpretation, and past remarks may not be indicative of what a patient presently wants, oral advance directives are often not effective.

If a patient has failed to execute a living will or health care proxy, many states provide for the designation of a surrogate decision maker (usually a family member). However, the situations when a surrogate may be appointed are limited. Depending upon the state, it may only apply when the individual has a terminal illness or is permanently unconscious, or to certain types of treatment, such as cardiopulmonary resuscitation. The surrogate must consider the wishes of the patient, if known, and his or her religious views, values, and morals.

Advance directives may not apply in an emergency situation, especially those that occur outside of a hospital. Emergency medical services (EMS) personnel are generally required to keep patients alive. Some states allow EMS personnel not to resuscitate patients who are certified as terminal and have an identifier, such as a bracelet.

Although the law encourages people to complete advance directives, most do not. It is estimated that only between 10 to 20 percent of the population have advance directives. There are several reasons for this. Young people think that they do not need one, even though the most well-known cases involving the right to die—Karen Ann Quinlan and Nancy Cruzan—involved young women in their twenties in persistent vegetative states. For old and young alike, bringing up the issue with potential surrogates, such as family and friends, can be uncomfortable and upsetting. Some individuals, especially those from traditionally disenfranchised populations such as the poor and minority groups, may fear that an advance directive would be used to limit other types of medical care.

Another primary reason why advance directives are not completed is that oftentimes patients wait for their physicians to broach the subject, rather than initiating it themselves. In a 1991 Harvard study four hundred outpatients of thirty primary care physicians and 102 members of the general public were interviewed to determine the perceived barriers to executing an advance directive. The most frequently cited reason for not completing an advance directive was the failure of physicians to ask about it. There are several reasons why physicians often do not initiate such discussions, including a belief that such directives are unnecessary (especially for younger patients) and lack of specific knowledge on how to draft one. Also, insurance companies do not reimburse physicians for their time spent discussing advance directives.

Limitations of Advance Directives

Even when advance directives are completed, they may not be complied with. One reason is that they may not be available when needed. In a self-administered questionnaire distributed to 200 outpatients in 1993, half of the patients who had executed an advance directive kept the only copy locked in a safe-deposit box. Hospitals may also fail to include a copy of the patient's advance directive in his or her chart. Physicians may be unaware of a patient's advance directive even when the document is placed in the patient's chart.

Another obstacle to the implementation of advance directives is that the documents themselves may contain ambiguities or terms open to interpretation, making it difficult to apply. For example, some living wills may simply state that the patient does not want heroic medical measures to be undertaken if the condition is terminal. But the term "heroic measures" can mean different things to different people. Artificial nutrition and hydration may be considered heroic to some, but not to others. Other living wills (and some state laws) require that a patient be terminally ill before it is activated. But physicians may disagree over the definition of terminally ill ; for some it means imminent death and for others it means an irreversible condition that will ultimately result in death. And even a clearly written advance directive may no longer represent a patient's wishes as death becomes imminent.

Health care proxies also have limitations. They often contain no guidance for the appointed person on the patient's views toward life-sustaining medical interventions. Decisions may therefore be based on what the proxy wants and not the patient. Because the proxy is usually a relative or close friend, this person's strong connections to the patient, and own feelings and beliefs, may influence the decisions made. This is especially true when it comes to withholding certain controversial treatments, such as a feeding tube. Figuring out what the patient would want can also be difficult. Past statements may not be indicative of present desires because a grave illness can alter views held when healthy.

Even when a patient's preference is clear, as expressed by the surrogate or within the document itself, physicians may not always comply with the patient's wishes. One of the largest studies of clinical practices at the end of life, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (the Support study) involved 4,805 patients in advanced stages of serious illnesses in five teaching hospitals located throughout the United States. The study found that physicians often ignore advance directives. This was true even where, as in the Support study, efforts were made to improve physician-patient communication on end-of-life decisions. The reasons are several, including unclear advance directives and pressure exerted by family members to ignore directives. Physicians may also fear that they may be sued for withholding life supports, although no such lawsuits have ever been successful.

Advance directives also pose a direct challenge to a physician's medical judgment. While the paternalistic model of the physician-patient relationship has been supplanted by one based on shared decision making and informed consent, remnants of the old model still remain. Physicians who see their primary goal as saving lives may also be less willing to yield to the patient's judgment, especially when it is difficult to predict with certainty whether life supports will enhance the patient's life or render dying more painful.

Improving Advance Directives

Attempts to address some of the deficiencies in advance directives have taken several tracks. One approach is to make advance directives more practical and easier to interpret and apply. One suggestion is to include specific medical scenarios and more detailed treatments (although too much specificity can leave out the present scenario). Partnership for Caring, an advocacy group located in Washington D.C., suggests including whether or not artificial nutrition and hydration should be provided being that these types of treatment often create disagreements. Another suggestion is to include a values history, a detailed rendition of the patient's religious, spiritual, and moral beliefs, which can provide guidance and clarification of the reasons for not choosing life supports. Still another approach recommended by the American Medical Association is the inclusion of general treatment goals, for example "restoring the ability to communicate, " that can be used to assess the appropriateness of a given intervention.

Other approaches to increase compliance with advance directives have focused on the behavior of physicians. The medical profession has been criticized for not adequately preparing physicians for dealing with death. Professional medical groups, such as the American Medical Association, have become more involved in preparing physicians by issuing guidelines and reports. A more extreme approach is advocated by some who have proposed imposing sanctions, either professional disciplinary action or penalties and fines, for ignoring an advance directive. Although some state laws provide for such sanctions, they are rarely if ever applied. Legal actions to recover monetary damages from the physician or health care provider for ignoring advance directives have also been initiated.

Other approaches include making the public and medical providers more aware of advance directives, and making them more accessible. A 1990 federal law, the Patient Self-Determination Act, requires hospitals, health maintenance organizations, and others that participate in Medicaid or Medicare to tell patients their rights under state laws to make end-of-life medical decisions. It also requires that advance directives be maintained in patients' charts. An important public education component of the law requires health care providers to educate their staff and the public about advance directives. Several states have tried more experimental approaches, including allowing advance directives to be displayed on driver's licenses and identification cards.

Advance directives are a relatively new phenomenon in medical care, with the first laws providing for them passed in the latter part of the twentieth century. Although there is widespread public support, that support is often more theoretical than practical. Changes in medical practices, the public's awareness, and the documents themselves have been proposed in order to encourage their use.

See also: Bioethics; Cruzan, Nancy; End-of-Life Issues; Informed Consent; Living Will; Natural Death Acts; Quinlan, Karen Ann

Bibliography

Cantor, Norman L. "Advance Directive Instruments for End-of-Life and Health Care Decision Making." Psychology, Public Policy and Law 4 (1998):629–652.

Danis, Marion, Leslie I. Southerland, Joanne M. Garrett, Janet L. Smith, Frank Hielema, C. Glenn Pickard, David M. Egner, and Donald L. Patrick. "A Prospective Study of Advance Directives for Life-Sustaining Care." New England Journal of Medicine 324 (1991):882–888.

Emanuel, Linda L., Michael J. Barry, John D. Stoeckle, Lucy M. Ettelson, and Ezekiel J. Emanual. "Advance Directives for Medical Care—A Case for Greater Use." New England Journal of Medicine 324 (1991):889–895.

Furrow, Barry R., Thomas L. Greaney, Sandra H. Johnson, Timothy Stoltzfus Jost, and Robert L. Schwartz. Health Law. St. Paul, MN: West Publishing Company, 1995.

Koch, Tom. "Life Quality vs. the Quality of Life: Assumptions Underlying Prospective Quality of Life Instruments in Health Care Planning." Social Sciences and Medicine 51 (2000):419–427.

Lens, Vicki, and Daniel Pollack. "Advance Directives: Legal Remedies and Psychosocial Interventions." Death Studies 24 (2000):377–399.

LoBuono, Charlotte. "A Detailed Examination of Advance Directives." Patient Care 34 (2000):92–108.

Loewy, Erich H. "Ethical Considerations in Executing and Implementing Advance Directives." Archives of Internal Medicine 158 (1998):321–324.

Rich, Ben A. "Advance Directives: The Next Generation." The Journal of Legal Medicine 19 (1998):1–31.

Sabatino, Charles P. "Ten Legal Myths about Advance Directives." Clearinghouse Review 28 (October 1994):653–656.

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

Silveira, Maria J., Albert DiPiero, Martha S. Gerrity, and Chris Feudtner. "Patients' Knowledge of Options at the End of Life: Ignorance in the Face of Death." Journal of the American Medical Association 284 (2000):2483–2488.

Teno, Joan, et al. "Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the Support Intervention." Journal of the American Geriatrics Society 45 (1995):500–507.

VICKI LENS

Advance directives

Definition

Advance directives are legal instruments that allow adults (persons over the age of 18 in the United States) to state their preferences regarding medical care in the event that they lose the capacity to make their own decisions, and to name another person to make treatment decisions in their stead. The first type of document is called a living will (or a will-to-live will), and the second is called a health care proxy or durable power of attorney (DPA) for health care. Both types of advance directives are witnessed and notarized (attested to or certified by a notary public). In some states, it is possible as of 2008 to combine a living will and a health care proxy in a single document called a comprehensive advance directive, but seniors should inquire as to whether their state recognizes a combined or comprehensive advance directive. Many attorneys still advise seniors to draw up both types of documents.

While it is not necessary to consult an attorney to complete an advance directive, some seniors may find a legal professional to be a helpful resource, particularly if they have an extremely complicated set of requests or unusual health condition.

Description

Living wills

The American Bar Association (ABA) defines a living will as a document stating “what kinds of medical treatments you would or would not want at the end of life.” Living wills first became a matter of public discussion in the late 1970s, when advances in medical care increased the possibility that a terminally ill person could be kept alive for weeks and months by aggressive or intrusive methods of treatment. As a result, many people began to prepare living wills that stated what types of medical treatments they would either accept or reject at the end of life. In the early 2000s, most living wills still consist of a description of the circumstances under which the will goes into effect (usually a physician's determination that the patient cannot recover or relate normally to family and friends) followed by a list of treatments that are not to be given in those circumstances (such as dialysis, intubation, the aggressive use of antibiotics , resuscitation, and surgery). This type of living will is called prospective refusal. Most living wills of this type also contain a provision that the patient should continue to be given all necessary measures for physical comfort.

Living wills are limited in many states to conditions of terminal illness and are not applicable in situations in which the senior is in a coma or is mentally incapacitated but not terminally ill. For this reason, it is critically important for someone planning a living will to find out the specific laws that are applicable in their state.

In recent years, a second type of living will has emerged, sometimes called a “Will to Live”. The Merck Manual of Geriatrics notes, “As managed care becomes more pervasive and as patients become concerned about being denied care, living wills that request [end-of-life] care are becoming more common.” Some observers think that the advocacy of prospective refusal living wills by so-called right-to-die groups has encouraged the public to accept assisted suicide and euthanasia. Another disturbing trend is a series of recent court rulings that permit denial of medical treatment to or withholding food and water from permanently disabled people who had not signed prospective refusal living wills. Persons who wish to complete a will-to-live type of living will can download a PDF file specific to each state from http://www.nrlc.org/euthanasia/willtolive/StatesList.html. Each file contains instructions on the legal requirements for a document to be valid in that state. This type of will still allows a senior to define specific treatments they would not want in specific circumstances.

Health care proxy

As defined by the ABA, a durable healthcare power of attorney (or proxy or agent or surrogate) “documents the person you select to be your voice for your healthcare decisions if you cannot speak for yourself.” The ABA considers naming a health care proxy a more important advance directive than a living will by itself, on the grounds that living will instructions always need interpretation, even when it is obvious that a patient is terminally ill. A health care proxy can respond to the actual situation at the time that an end-of-life decision has to be made. The major exception to this principle is the senior who has no one close to them that they trust to act as a health care proxy. In that case a living will is preferable in spite of its limitations.

The ABA offers an online “tool kit” for selecting a health care proxy. The first criterion is meeting the legal requirements for acting as a proxy. In most states, the proxy must be over 18 years of age; cannot be the senior's health care provider or an employee of that provider (unless the employee is the senior's spouse or relative); and cannot be the owner or operator of a health care facility serving the senior. Other qualifications to consider when choosing a proxy:

• The proxy is willing to speak on the senior's behalf.
• Is able to distinguish between his or her thoughts and feelings and the senior's.
• Lives nearby or could travel on short notice if needed.
• Knows and understands the senior well.
• Is able to discuss sensitive issues and will really listen to the senior.
• Is likely to be available for a number of years into the future.
• Can deal with conflicts among family, friends, and medical professionals.
• Is someone the senior trusts with his or her life.

Completing and filing advance directives

Both types of advance directives must be completed, witnessed, and signed while the senior is still competent—has the cognitive ability needed to complete such legal tasks as making a will or signing a contract. In most states, two witnesses over the age of 18 are required, and they must sign the directive in the presence of the senior and each other.

Although forms for advance directives are readily available from many sources that offer legal advice to seniors (including the departments of aging and senior health issues in the various states), lawyers who specialize in elder law urge any senior drafting an advance directive to individualize any form that they use. The American Bar Association states that “[C]hanges and additions to standard language are permissible; any form can and should be personalized to reflect the individual's particular values, priorities, and wishes. … If changing the language creates any doubt about the validity of the form, then further legal consultation is in order. Above all, it is a mistake to pick up an ‘official’ form and just sign it unchanged, without first being sure that it truly reflects one's specific wishes.”

After the advance directive is signed, the senior should take the following steps:

• Keep the original copy of the directive(s) and any notes or worksheets where they can be located easily.
• Give copies of all documents to the health care proxy and tell him or her the location of the originals.
• Give a copy of the directive(s) to the primary physician and make certain a) that the copy is put in the medical record; and b) that the doctor will support the senior's wishes.
• If the senior enters a hospital or nursing home, he or she should take along a copy of the directive(s) and make sure it is placed in the medical record.
• Some organizations, such as the living will registry listed below, register advance directives electronically (fees vary; most are one-time and run about $125) and allow health care institutions to access them electronically. Some churches and synagogues also keep advance directives on file for their members.
• Review the advance directive(s) if the senior's wishes change or his or her health declines; and ask about the proper procedures for canceling or amending the directive(s) in his or her state.

Viewpoints

Much of the discussion about advance directives in the United States focuses on the desirability of encouraging more and younger members of the general population to draft advance directives. As of 2008, only about 40 percent of American adults have advance directives; their average age, according to one survey, is 67. Another survey reported that about 70 percent of deaths in hospitals occur after the decision is made to forgo life-saving treatment, but in the majority of those cases, the decision is made by family members, not the patient.

In addition to offering seniors a measure of control over their future health care and preventing family arguments about medical care at the end of the senior's life, advance directives are also the one of the best alternatives to a conservatorship . A conservatorship or guardianship refers to the authority given by a court to a person or institution over an incapacitated person, known as a ward. Conservatorships can be abused in various ways, and since the 1980s there have been a number of cases in the news about seniors exploited or neglected by court-appointed guardians. A Senate committee studying the flaws in the nation's conservatorship system in the early 2000s has recommended advance directives as a good option for seniors to avoid the many problems in conservatorships. Because of these reasons for having advance directives, the American Bar Association has designated April 16, 2008, as National Healthcare Decisions Day; this initiative is intended to get Americans of all ages to think about their future healthcare decisions and complete an advance directive.

Within the legal profession, there is also considerable discussion of drafting advance directive forms that would be valid nationwide rather than based on 50 separate bodies of state law. These would be particularly helpful for seniors who live in one state during the colder months and another state in the summer, or who are moving in order to share a household with a relative in another state. The group that is working on a uniform advance directive that would be valid in all 50 states is the National Conference of Commissioners on Uniform State Laws (NCCUSL). Progress reports on their initiatives may be found on the website listed below.

Primary care physicians are increasingly regarding discussion of advance directives as part of responsible patient care. An article on this subject is listed under Periodicals below; Dr. Aitken's article is also available online at http://www.aafp.org/afp/990201ap/605.html [cited February 8, 2008].

KEY TERMS

Competence —In law, having the cognitive ability to sufficient to carry out such legal tasks as making a will or completing an advance directive.

Conservator/guardian —An individual or organization named by order of the court to exercise any or all powers and rights over the person or financial assets of an incapacitated individual.

Health care power of attorney —An alternate term for health care proxy.

Prospective refusal —The more common type of living will, in which a person refuses in advance to receive life-sustaining care when there is no hope of recovery and/or their quality of life is severely impaired.

Proxy —In law, a person with the authority to act for another. In some states a health care proxy may be called an agent, representative, surrogate, attorney- in-fact, or patient advocate.

Will-to-live living will —A living will that contains explicit instructions for life-sustaining treatment, regardless of the patient's condition or prognosis.

Resources

BOOKS

Beers, Mark H., M. D., and Thomas V. Jones, MD. Merck Manual of Geriatrics, 3rd ed., Chapter 14, “Legal and Ethical Issues.” Whitehouse Station, NJ: Merck, 2005.

Morris, Virginia. How to Care for Aging Parents, 2nd ed. New York: Workman Publishing Co., 2004.

PERIODICALS

Aitken, Paul V., M.D. “Incorporating Advance Care Planning into Family Practice.” American Family Physician 59 (February 1, 1999): 605–620.

Alexander, G. J. “Durable Powers of Attorney as a Substitute for Conservatorship: Lessons for Advance Directives.” Psychology, Public Policy, and Law 4 (September 1998): 653–667.

Cohen, N. H. “Advance Directives: Know What You Want, Get What You Need.” Mayo Clinic Proceedings 82 (December 2007): 1460–1462.

Fields, Robin, Evelyn Larrubia, and Jack Leonard. “Guardians for Profit.” Los Angeles Times, November 13 to November 16, 2005. This is a four-part series on abuses of conservatorship and the need for legal reform. Gateway page for the series is available online at http://www.latimes.com/news/local/la-me-conservators-series,0,7048390.special [cited February 10, 2008].

Glass, A. P., and L. Nahapetyan. “Discussions by Elders and Adult Children about End-of-life Preparation and Preferences.” Preventing Chronic Disease 5 (January 2008): A08.

McAuley, W. J., M. E. McCutcheon, and S. S. Travis. “Advance Directives for Health Care among Older Community Residents.” Journal of the Health and Human Services Administration 30 (Spring 2008): 402–419.

OTHER

Administration on Aging (AOA). Legal Services for Older Adults and Elder Law. Available online at http://www.aoa.gov/prof/notes/Docs/Legal_Services_Elderly.pdf [cited February 9, 2008]. This is an 8-page document with links to consumer information about elder law, legal services providers for the elderly, federal benefit information, and other resources.

American Bar Association (ABA) Commission on Law and Aging. Consumer's Tool Kit for Health Care Advance Planning, 2nd ed. Washington, DC: ABA, 2005. Available online at http://www.abanet.org/aging/toolkit/ [cited February 8, 2008].

Sabatino, Charles P., J.D. 10 Legal Myths about Advance Medical Directives. Available online in PDF format at http://www.abanet.org/aging/publications/docs/10legalmythsarticle.pdf [cited February 8, 2008]. Short, easy-to-understand set of guidelines for drafting and filing an advance directive.

Smith, Gordon H., and Herb Kohl. Guardianship for the Elderly: Protecting the Rights and Welfare of Seniors with Reduced Capacity. Report prepared for the United States Senate Special Commission on Aging. Washington, DC: U. S. Senate, 2007. Available online in PDF format at http://www.guardianship.org/pdf/Guardianship_Report.pdf [cited February 9, 2008].

ORGANIZATIONS

Administration on Aging (AoA), One Massachusetts Avenue, Washington, DC, 20201, (202) 619-0724, aoainfo@aoa.hhs.gov, http://www.aoa.gov/index.asp.

American Bar Association (ABA) Commission on Law and Aging, 740 15th Street, NW, Washington, DC, 20005, (202) 662-8868, http://www.abanet.org/aging.

National Conference of Commissioners on Uniform State Laws (NCCUSL), 111 North Wabash Avenue, Suite 1010, Chicago, IL, 60602, (312) 450-6600, (312) 450-6601, http://www.nccusl.org/Update/AboutNCCUSL_desktopdefault.aspx.

National Right to Life Committee (NRLC), 512 10th St. NW, Washington, DC, 20004, (202) 626-8800, NRLC@nrlc.org, http://www.nrlc.org/default.html.

U.S. Living Will Registry, 523 Westfield Ave., P.O. Box 2789, Westfield, NJ, 07091, (800) LIV-WILL (548-9455), (908) 654-1919, admin@uslivingwillregistry.com, http://www.uslivingwillregistry.com/default.asp.

Rebecca J. Frey Ph.D.

Advance directives

Definition

An advance directive is a written document in which people clearly specify how medical decisions affecting them are to be made if they are unable to make them, or to authorize a specific person to make such decisions for them.

Description

Advance directives are recognized in most industrialized countries of the world. In the United States, by law, the creation of an advance directive is the right of all competent adults. The goal of this legislation is to empower all health care consumers to make their own judgments regarding medical decision-making, to approve of potential treatment they believe they would want, and to refuse care they do not perceive as being in their best interest. These directives are generally divided into living wills or durable powers of attorney.

Federal law requires that all health care providers (health maintenance organizations, or HMOs, skilled nursing care facilities, hospices, home health care providers, and hospitals) make information regarding advance directives available to all people in their care. Many states require that two people witness such advance directives.

Living wills

Living wills go into effect while the individual is still living, but is unable to communicate his/her wishes regarding care. Traditionally, a living will has specified the individual's wishes concerning procedures that would sustain life if he/she were terminally ill. Newer advance directives do not limit such preferences to terminal illness but instead go into effect whenever the individual is unable to speak for him/herself.

There are several ways of preparing a living will. Sometimes a preprinted form is provided, or people may create their own form, or may simply write down their wishes. Though all 50 states and the District of Columbia recognize the validity of advance directives, each state's laws have differences as to whether one or all of these types of preparation of the document are legal and binding in that state. It is recommended that people speak to their attorney or physician to ensure that their wishes are carried out.

Durable power of attorney for health care

A durable power of attorney for health care is the second type of advance directive. This is a signed, dated, and witnessed document that authorizes a designated person (usually a family member or close friend) to act as an agent, or proxy. This empowers the proxy to make medical decisions for a person when the person is deemed unable to make these decisions him/herself. Such a power of attorney frequently includes the person's stated preferences in regard to treatment. Several states do not allow any of the following people to act as a person's proxy:

• the person's physician, or other health care provider
• the staff of health care facilities that is providing the person's care
• guardians (often called conservators) of the person's financial affairs
• employees of federal agencies financially responsible for a person's care
• any person that serves as agent or proxy for 10 people or more

As in the case of living wills, regulations regarding such powers of attorney vary from state to state. Some states provide printed forms, and require witnesses, while other states do not.

Causes

As medical advances provide greater than ever means of extending life, it becomes increasingly important for people to evaluate which of the available means they would wish used. If this is not done, people run the risk of having health care providers make critical decisions regarding their care. The absence of advance directive information can also create dilemmas and increased stress for loved ones. Some of the terms describing now-routine medical interventions that can maintain life under dire circumstances include:

• cardiopulmonary resuscitation (CPR), the use of chest compressions and/or mouth-to-mouth resuscitation to restart heart beat and/or respirations
• ventilators or respirators that physically deliver oxygen via a tube into the windpipe when the lungs are unable to work on their own
• Life-sustaining care encompasses the use of machinery or equipment that prolongs life by keeping the body functioning. Examples of life-sustaining care include hyperalimentation, tube feedings, and kidney dialysis.

In contrast, life-enhancing care, sometimes referred to as Care and Comfort Only, involves the provision of high quality, but non-heroic medical care until death occurs naturally. Important examples of life-enhancing care include administration and monitoring of medications, carrying out other measures to control pain, comfort measures such as bathing and massage, and offering food and fluids.

Special concerns

Though specifics vary, all states have laws allowing people to spell out their health care wishes for a time when they might be unable to speak for themselves. But, as noted, there is a potential for disparity in how advance directives are interpreted. In most hospitals, an ethics committee is available to assist and support both patients and families faced with decisions regarding medical care. In 1995, the American Association of Retired Persons (AARP), with the help of the American Bar Association (ABA) and the American Medical Association (AMA), produced a combined living will and power of attorney for health care document that provides very specific and detailed statements of a person's wishes. Further information regarding the laws in individual states can be obtained from the AARP, ABA, or AMA.

The AARP recommends that those individuals considering making an advance directive address the following issues:

• What the person's goals for medical treatment are: Should treatment be used to sustain life, regardless of the quality of that life?
• Who should act as the person's proxy or agent? It is important for the person making an advance directive to actually speak with this designated person and make his/her wishes known.
• Though there is no formula for specificity, the AARP recommends that instructions be made as clear and specific as possible, but should not restrict the proxy from making informed decisions at the time that cannot be anticipated in advance.
• To ensure that an advance directive is carried out, copies of it should be given to a person's physician, proxy, family, or any other interested party.

Resources

BOOKS

Clayman, Charles A., M.D. American Medical Association Home Medical Encyclopedia. New York: Random House, 1989.

Doukas, David J., and William Reichel. Planning for Uncertainty, A Guide to Living Wills and Other Advance Directives for Health Care. Baltimore, MD: Johns Hopkins University Press, 1993.

ORGANIZATIONS

Choices In Dying, Inc., 200 Varick Street, New York, New York10014-4810. (800) 989-WILL.

American Association of Retired Persons Legal Counsel for the Elderly., P.O. Box 96474, Washington, DC, 20090-6474.

American Medical Association. <http://www.ama-assn.org>.

American Bar Association. <http://www.abanet.org>.

Center for Healthy Aging. <http://www.careproject.net>.

Joan Schonbeck, R.N.

KEY TERMS

Competent

—Duly qualified; having sufficient ability or authority; possessing all the requirements of law.

Dialysis

—A technique used to remove waste products from the blood and excess fluid from the body as a treatment for kidney failure.

Hyperalimentation

—The administration of a nutrient solution into a large, central vein near the heart. It is often used supplementary to eating, but can provide complete nourishment.

Tube feeding

—Administration of nourishment, in nutritionally complete solutions, via tube into the stomach or intestines. Tubes can be either nasogastric, or inserted through the nose into the stomach via the esophagus, or surgically implanted directly into the stomach. These are usually used to sustain life when a person is unable to eat or take fluids by mouth.

QUESTIONS TO ASK THE DOCTOR

• What is the prognosis for my type of cancer?
• What are the possible treatments?
• What are the side effects of these treatments?
• What are the laws in my state regarding living wills and durable powers of attorney for health care?
• How can I ensure that my wishes will be carried out regarding advance directives?