The controversy over patients’ rights escalated in the 1970s, coinciding with dramatic advances in medical technology. The early legal cases concerned the “right to die,” testing what medical treatment can be administered in the face of a patient’s desire to die naturally, without artificial, life-prolonging equipment. In the Quinlan case, for example, the court held that the Constitution guarantees individuals the right to direct their own medical care. Over time, the right to die concept came to be seen as part of a patient’s right to self-determination, including a recognition that some patients prefer that all possible treatments and procedures be used to treat them. PSDA, which became effective in December 1991, applies to most institutional providers and prepaid plans that participate in Medicare or Medicaid. These include hospitals, nursing homes, home health care providers, hospices, and health maintenance organizations, but not providers of outpatient services or emergency medical teams.Specifically, the provider or organization is required to provide to all adult patients, residents, and enrollees written information on their rights under state law to make decisions concerning medical care, including the right to execute an advance directive, as well as maintain the policies of the provider regarding implementation of advance directives; document in the medical record whether the individual has an advance educate the staff and the community about advance directives; not condition the provision of care, or otherwise discriminate, on the basis of whether a patient has an advance directive; and ensure compliance with state law respecting advance directives. In addition, PSDA requires that HHS conduct a public education campaign about advance directives and oversee provider compliance. An advance directive sets out an individual’s preferences about treatment should the person become incompetent or unable to communicate these preferences to medical personnel. In addition to directing physicians to withdraw or withhold life-sustaining procedures, advance directives may be used to record a patient’s wish to receive all available medical treatment. (See app. I for examples of advance directive forms.) There are essentially two types of advance directives: living wills and health care powers of attorney. A living will is a document that informs health care providers of the kind of medical care the individual wants provided or withheld. Living wills can be nonspecific statements, scenario- and treatment-specific statements, or include value profiles. Under state laws, a living will typically takes effect when the patient (1) is diagnosed as close to death from a terminal illness or is permanently comatose and (2) cannot communicate his or her wishes for medical care. In general, once a physician receives a living will, he or she either must honor its instructions or transfer the patient to another physician who will honor them. State laws on living wills typically exempt physicians from liability for complying with advance directives and prescribe minimal penalties for physicians who refuse to follow them. As discussed in appendix II, states have imposed requirements on what medical conditions can make a living will operative. A health care power of attorney is a document that identifies a health care agent as decisionmaker for the patient. The health care agent has decision-making authority when the individual is terminally ill or permanently comatose. In addition, the agent may be given the authority to make any other kind of health care decisions regardless of the condition of the patient, thereby giving the agent broader decision-making authority than typically specified in a living will. Under state law, a health care power of attorney typically becomes operative when a physician decides the patient is unable to make a decision. Advance directives are not universally supported. A number of groups have expressed concerns about the ethics of patient self-determination laws and the laws’ potential effects. They are concerned that a lower standard of care for all patients, active euthanasia, or discrimination against people with disabilities could result. Some physicians also have raised concerns about advance directives. Some believe that such documents will reduce their authority over treatment decisions and could produce an adversarial physician-patient relationship. More generally, physicians may oppose any extension of legal regulation into medical practice. Institutional providers and HHS generally appear to be complying with most of the act’s requirements. Limited data indicate that most providers offer information to patients about executing an advance directive, but problems may occur in documenting whether a patient actually has one. HHS, through the Health Care Financing Administration (HCFA), has complied with most PSDA provisions. However, it has not conducted a required mailing to Social Security beneficiaries about advance directives. Under PSDA, Medicare and Medicaid hospitals, nursing facilities, and other providers must inform patients of their decision-making rights, distribute state-specific information about advance directives, and inquire and document whether a patient has an advance directive. Information on the degree to which providers fulfill these requirements is limited. Few surveys have looked specifically at compliance with advance directive requirements. These sources indicate that most health care institutions comply with the requirement to develop and distribute information on advance directives. However, it also appears that fewer facilities meet the requirements that the existence of an advance directive be documented in an individual’s medical record and that an organization provide for community education on advance directives. In early 1992, the HHS Office of the Inspector General (OIG) conducted a survey of the institutional implementation of PSDA. OIG concluded that most of the facilities sampled were complying with the administrative requirements of the act. All, or almost all, facilities had (1) developed written policies and procedures about advance directives; (2) developed written materials on advance directives and provided them to each adult patient on admission or when commencing services; (3) provided materials to patients, including an explanation of state law; and (4) educated staff about advance directives. At about three-quarters of the facilities, the materials provided to the patient clearly state that a patient does not have to have an advance directive to receive treatment. Approximately two-thirds of the facilities had planned or provided community education on advance directives. However, the report also concluded that “performance in clearly and consistently documenting the existence of an advance directive in the chart needed improvement.” At 15 percent of the facilities, more than half of the charts had missing or incomplete documentation on whether a patient had an advance directive. The report noted that personnel in many sampled facilities attributed chart documentation problems to confused or disoriented patients, emergency room admissions, or pregnant patients not qualified to implement an advance directive under state law. Additional information on compliance is available from accreditation surveys performed by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). While JCAHO’s standards pertaining to advance directives are somewhat different than the PSDA requirements, they overlap on most of the requirements. Results from 514 hospitals surveyed from January through May 1994 showed that almost all hospitals were complying with the standards common to PSDA and JCAHO. According to a JCAHO official, these results are similar to those for the 1992 and 1993 surveys. Furthermore, HCFA officials we spoke with believe that, based mainly on self-reported information, nearly all Medicare and Medicaid facilities are complying with PSDA’s administrative and documentation provisions. Similarly, officials in HCFA’s Office of Managed Care noted that, to their knowledge, almost no health plans have been found noncompliant with PSDA requirements. Compliance is determined through providers’ written assurances to state survey agencies or routine on-site validation surveys. PSDA requires HHS to take several actions to ensure provider compliance and to educate the general public. HCFA incorporated PSDA requirements into Medicare contracts and survey protocols for prepaid plans, home health agencies, nursing homes, and skilled nursing facilities. HCFA also released state Medicaid manual instructions containing guidelines for implementing PSDA provisions. In addition, PSDA requires HHS to provide technical assistance to the states and to conduct a public education campaign on advance directives. As shown in table 1, HHS has fulfilled some but not all of these responsibilities. HCFA prepared and distributed a brochure and videos to provider organizations and groups that work with Medicare beneficiaries and also placed brochures in information displays at targeted locations. However, HHS did not mail information about advance directives to all Social Security beneficiaries as mandated. A HCFA representative we spoke with explained that HHS had not been appropriated the funds needed to comply with this provision. He estimated that such a mailing would cost HHS several million dollars. HCFA also did not fully assist states in developing documents describing state-specific laws or help states ensure that providers receive documents that are to be distributed. According to a HCFA official, there was no need to duplicate efforts of private organizations that had developed summaries of state laws regarding advance directives and made them available to providers and state agencies. In fact, we found that the American Bar Association and Choice In Dying (a national, not-for-profit advocacy group concerned with the rights and needs of the dying, their families, caregivers, and health care providers) prepared state-specific information on advance directives that would meet this need. The underlying assumption of PSDA is that individuals will prepare advance directives if given sufficient information. Despite improved public awareness of patient self-determination issues, however, the number of individuals completing formal advance directives has been estimated at between 10 and 25 percent (with some estimates as low as 5 percent) of the adult population. Discomfort with the subject of death and dying is not typically the reason people fail to complete advance directives. Rather, a number of social factors, particularly poor communication among individuals, physicians, and family members, present barriers to developing the required documents. Noting that only 50 percent of the population completes an estate will, a leading researcher we spoke with predicted that the proportion completing an advance directive will likely never be any greater than that. There are no recent nationally representative studies on how many Americans have completed advance directives. However, researchers have conducted many small studies on discrete populations, such as nursing home residents or hospital patients. These studies are consistent in their finding that completion rates are one-third to one-half awareness rates. These proportions vary depending on the sex, age, and health of the population surveyed. A representative of Choice In Dying told us that most people who complete advance directives are white, middle- to upper-class, educated, older females. A 1993 study by the HHS OIG found that only 18 percent of hospital patients had advance directives, compared with almost 50 percent of patients in a nursing facility. The OIG study also reported that only 9 percent of patients under 30 had a directive, while 35 percent of patients over 75 had one. Table 2 shows the results of several studies that measured the public’s familiarity with and completion of advance directives. Individuals may not complete advance directives for a number of reasons. How a patient learns of advance directives may be an important factor. Many experts with whom we spoke believe that to improve completion rates, patients must discuss advance directives with their physicians or health care agents. This communication would ideally occur before a patient reached a state that made the necessity of end-of-life planning imminent to allow adequate time for thoughtful and in-depth discussions. Although the importance of communication is understood, the frequency of discussions between patients and physicians on advance directives has not significantly increased. According to a 1991 Harvard study, one of the most frequently cited barriers to completing an advance directive was the patient’s expectation that the physician would take the initiative. Other studies have shown that some patients may not want to initiate such discussions because they have not established a personal relationship with the physician or they feel that such a discussion may present the physician with a conflict of interest. However, many health care providers assume patients will bring up the issue. Physicians are often reluctant to discuss end-of-life care because they (1) lack the knowledge or the training on how to formulate advance directives; (2) believe directives are unnecessary for young, healthy patients; (3) are not compensated for the time it takes to carefully discuss the topic; or (4) feel death is not an appropriate outcome of care. As one study noted, “The notion of shared medical decision making is a relatively recent phenomenon, and physicians traditionally have placed greater value on protecting patient welfare than respecting patient rights.” Another possible barrier is that PSDA requires providers and organizations to discuss advance directives at the time a patient is admitted to a medical facility or comes under the care of a home health agency or hospice. Providers, researchers, and interest groups agree that admission is not a particularly good time for people to first think about their end-of-life treatment preferences, although it may be an appropriate time to reconsider them. Hospitals and nursing homes, in particular, find that such timing could be problematic, since newly admitted patients are often ill, traumatized, or simply overwhelmed. Furthermore, hospitals generally use nurses, social workers, patient representatives, and clergy to distribute a limited amount of information on advance directives such as forms and brochures. One medical ethicist we spoke with suggested that this could pose a problem if medical questions or issues arise that the people providing the information cannot respond to appropriately. A number of other issues may also present barriers to developing advance directives. Some individuals misunderstand advance directives, believing that they are only relevant for older people or those in poor health. For others, social impediments may interfere. For example, individuals may not have family members or friends who can serve as surrogate decisionmakers or may fear that family members would be upset by the discussion or the document. In addition, individuals who have difficulty gaining access to the health care system may be suspicious of advance directives, fearing that if they express a preference to terminate care under certain conditions, it will be used to limit other or all types of care. The provider groups we spoke with generally supported advance directives. Yet, advance directives may not always be implemented as patients intend. Although providers generally are legally required to implement a patient’s advance directive, it is not clear that they always do so. In one study, for example, patient care as expressed in living wills was provided 75 percent of the time. A variety of factors affects whether an advance directive actually controls end-of-life care decisions, including the availability or specificity of a living will, family wishes, physicians’ attitudes, and legal issues. Although advance directives may be effective in designating proxy decisionmakers, there is evidence that health care agents may not accurately express the patients’ wishes. Furthermore, some patients may want their physicians or agents to override their advance directives in some cases or at least interpret them with broad discretion. Experts agree that the effectiveness of an advance directive is contingent upon the patient’s discussions of end-of-life treatment preferences with those who may need to make such medical decisions, be they providers or health care agents. Better communication with patients may help physicians in interpreting living wills and improve the accuracy of proxy assessment of patient treatment wishes. The patient’s advance directive may not be followed simply because it is not available when needed. PSDA does not require that the provider keep a copy of the patient’s directive with the patient’s chart. In fact, the 1992 OIG survey of facilities found that only 60 percent of patients with advance directives had copies with their medical charts. Similarly, in its 1994 hospital survey, JCAHO found that only 79 percent of hospitals fully met its standard that “any advance directive(s) is in the patient’s medical record and is reviewed periodically with the patient or surrogate decision maker.” It is not unusual for a patient to keep the only copy in a safe deposit box. In addition, the directive may not accompany a patient who is transferred from one institution to another. In one study, an advance directive was with the nursing home chart for 74 percent of the patients transferred to a hospital, but the document was successfully delivered to the hospital and incorporated into the hospital record for only about one-third of the cases. (Staff at the nursing home suggested staff turnover as a cause.) Simply having advance directives available is not necessarily enough to make these documents effective. One study indicated that physicians are often not aware of patients’ advance directives. Only one-third of the physicians providing care to terminally ill patients with advance directives knew that the directives were in the patients’ charts on day 10 of their hospital stays. Some physicians do not treat the documents as important. Some advance directives may not be followed because how they should be interpreted is unclear. Living wills may specify conditions that cannot easily be translated into medical terms. For example, “heroic measures” may or may not include cardiopulmonary resuscitation, and “no hope of recovery” may actually mean “very remote chance” since absolute certainty is impossible. Similarly, the definition of “terminal” can be subject to interpretation or the care being given may be said to be only palliative. Such linguistic or medical vagueness commonly found in predrafted forms may cause physicians to disregard the document. Another problem is that an individual with an advance directive may not have previously discussed specific treatment preferences with a designated health care agent. A study of discharged hospital patients found that although 73 percent had general discussions with their agents, only 33 percent had discussions about specific end-of-life interventions, such as mechanical ventilation. Some studies have shown that proxy assessments, and even physician predictions, of patient preferences vary, but are sometimes no better than chance. One study found “the only predictor of accurate surrogate decision making was specific discussion between patient and surrogate about life support.” In addition, many people are not clear in their own minds what they would want. Medical decisions can be particularly complicated. Anticipating all the possible facts and variables is a daunting, if not impossible, task. That is why some ethicists focus on the importance of discussing values rather than specific instructions. Even if a patient has an advance directive, physicians still consult the family. Although it is contrary to law, physicians sometimes do not implement an advance directive if it conflicts with the family’s wishes. This is most likely to occur if the treatment is somewhat controversial, such as the withdrawal of artificial nutrition and hydration. For example, a study of tube feeding found that family opinion was the most influential factor affecting the physician’s recommendation and that most physicians said they would follow family preferences even when contrary to the living will. Similarly, a physician may try to influence the family or other health care agent’s decision. Family members may not be assertive enough about their rights to continually question and assert themselves with the physician. “The evidence suggests that physicians generally still consider it their responsibility to make treatment decisions that they believe are in the patient’s best interest and that patient preferences should be ignored if they are inconsistent with the physician’s view of the patient’s best interests. In other words, it appears that end-of-life decisions are frequently driven by the physician’s values rather than the patient’s values.” Examples of this predominance of physicians’ values are becoming more evident. A recent study at the University of Pennsylvania Medical Center found that 39 percent of ICU doctors surveyed had ended life-sustaining treatment on the basis of medical futility without the consent—or sometimes the knowledge—of the patient or family. In addition, 3 percent said they had made similar decisions over the objection of a patient’s family, and 34 percent “declined to withdraw” life support despite a family’s wishes. Physicians’ ethical views may also influence implementation of advance directives. Although some experts hold that there is little or no legal or ethical distinction between withholding and withdrawing treatment, be it “ordinary” or “extraordinary” care, a significant proportion of providers do see a distinction. Similarly, some state statutes allow the termination of artificial nutrition and hydration only when explicit statements are present in the directive. However, many providers believe that such care should always be continued, even if other life supports, such as ventilation and dialysis, are stopped. Concern over litigation may be an issue for both the facility and the direct provider. For example, nursing homes and home care agencies, which are closely regulated, are especially concerned about litigation. Physicians may be apprehensive about being sued by a family member who wants a different level of care provided than specified in the patient’s directive. While this concern is largely unfounded, deviating from the directive leaves a physician susceptible to being sued by other family members, insurers, or other patient advocates. With the exception of the mailing to Social Security recipients, HHS and most institutional providers appear to be complying with PSDA’s provisions. Although they have not done as much as many legal and health care experts feel they should have to educate the public about advance directives, there is some question about the effectiveness of such activities. First, few people have chosen to exercise this form of self-determination in spite of public and private efforts to encourage its use. Second, even in cases of completed advance directives, the lack of appropriate discussions with physicians and health care agents about specific preferences may diminish the documents’ effectiveness. As a result, some experts in the field are rethinking how best to ensure that patients’ wishes for end-of-life care are known and acted on. Although PSDA does not impose a deadline for compliance, HHS, because of the related costs, has not mailed information about advance directives to Social Security recipients as required under the law. For that reason, we recommend that the Secretary of Health and Human Services analyze whether such a mailing would be a cost-effective way of further meeting the needs addressed by the Congress in PSDA and, if not, seek a legislative amendment repealing the requirement. The Secretary of Health and Human Services acknowledged that not every Social Security recipient was sent a mailing on advance directives, noting that such a mailing could cost $4 million to $6 million. She believes, however, that “a substantive number of activities have been undertaken to provide such information.” For example, HCFA plans to distribute the 1996 Medicare handbook containing specific information about PSDA and advance directives to approximately 40 million beneficiaries. While we recognize that HHS has taken an alternative approach to providing information to recipients, these activities are not consistent with the legislative mandate. If HHS believes that its public education campaign activities fully satisfy the needs addressed by the Congress in PSDA, the Secretary should specifically seek legislative relief from the requirement to conduct a mass mailing to Social Security beneficiaries, as we recommend. We are sending copies of this report to the Secretary of Health and Human Services, interested congressional committees, and others. Copies will also be made available to others on request. If you or your staff have any questions about this report, please call me at (202) 512-7119. Major contributors are listed in appendix III. Some experts and interest groups believe that a good advance directive combines medical care instructions and a designation of a health care agent who can “resolve apparent uncertainties.” Three samples of advance directives are shown in this appendix. All three have sections for assigning a health care power of attorney and personal preferences for medical treatment, and two have a section on patient wishes about organ donation. The instructions accompanying two of these forms state that any or all of the sections may be completed. Figure I.1 is the form included in the Uniform Health-Care Decisions Act of 1993. (For further discussion of the act, see app. II.) This form does not refer to specific treatments except for artificial nutrition and hydration and relief from pain. It does, however, provide room to list additional preferences. Figure I.2 is the medical directive form developed by Linda L. Emanuel and Ezekiel J. Emanuel. The medical directive portion includes various scenarios and treatment options; individuals indicate whether they want specific treatments and under what conditions. The patient may also check off a general statement for each scenario without specifying treatments. Figure I.3 is a values history form from the University of New Mexico. The stated intent of the form is to assist people in thinking and writing about what is important about their health. The first section provides an opportunity to discuss values, wishes, and preferences about issues such as personal relationships, overall attitude toward life, and thoughts about illness. The second portion of the form includes sections to identify which written legal documents have been completed and where they are located, and to express wishes concerning specific medical procedures. The packet also includes a copy of a New Mexico living will and a form to assign power of attorney. 4. Optional Form. The following form may, but need not, be used to create an advance health-care directive. The other sections of this govern the effect of this or any other writing used to create an advance health-care directive.An individual may complete or modify all or any part of the following form: You have the right to give instructions about your own health care. care decisions for you.This form lets you do either or both of these things.It also lets you express your wishes regarding donation of organs and the designation of your primary physician. If you use this form, you may complete or modify all or any part of it.You are free to use a different form. You also have the right to name someone else to make health- Part 1 of this form is a power of attorney for health care. Part 1 lets you name another individual as agent to make health- care decisions for you if you become incapable of making your own decisions or if you want someone else to make those decisions for you now even though you are still capable. alternate agent to act for you if your first choice is not willing, able, or reasonably available to make decisions for you. Unless related to you, your agent may not be an owner, operator, or employee of at which you are receiving care. You may also name an your agent may make all health-care decisions for you. has a place for you to limit the authority of your agent. You need not limit the authority of your agent if you wish to rely on your agent for all health-care decisions that may have to be made. If you choose not to limit the authority of your agent, your agent will have the right to: Unless the form you sign limits the authority of your agent, This form a) consent or refuse consent to any care, treatment, service, or procedure to maintain, diagnose, or otherwise affect a physical or mental condition; b) select or discharge health-care providers and institution; c) approve or disapprove diagnostic tests, surgical procedures, programs of medication, and orders not to resuscitate; and d) direct the provision, withholding, or withdrawal of artificial nutrition and hydration and all other forms of health care. Part 2 of this form lets you give specific instructions about any aspect of your health care. express your wishes regarding the provision, withholding, or withdrawal of treatment to keep you alive, including the provision of artificial nutrition and hydration, as well as the provision of pain relief. Space is also provided for you to add to the choices you have made or for you to write out any additional wishes. Choices are provided for you to Part 3 of this form lets you express an intention to donate your bodily organs and tissues following your death. Part 4 of this form lets you designate a physician to have primary responsibility for your health care. After completing this form, sign and date the form at the end. It is recommended but not required that you request two other individuals to sign as witnesses. completed form to your physician, to any other health-care providers you may have, to any health-care institution at which you are receiving care, and to any health-care agents you have named. You should talk to the person you have named as agent to make sure that he or she understands your wishes and is willing to take the responsibility. You have the right to revoke this advance health-care directive or replace this form at any time. I designate the following individual as my agent to make health-care decisions for me: (name of individual you choose as agent) (address) (city) (state) (zip code) (home phone) (work phone) If I revoke my agent’s authority or if my agent is not willing, able, or reasonably available to make a health-care decision for me, I designate as my first alternate agent: (name of individual you choose as first alternate agent) (address) (city) (state) (zip code) (home phone) (work phone) If I revoke the authority of my agent and first alternate agent or if neither is willing, able, or reasonably available to make a health-care decision for me, I designate as my second alternate agent: (name of individual you choose as second alternate agent) (address) (city) (state) (zip code) (home phone) (work phone) 2) My agent is authorized to make all health-care decisions for me, including decisions to provide, withhold, or withdraw artificial nutrition and hydration and other forms of health care to keep me alive, except as I state here: (Add additional sheets if needed.) 3) WHEN AGENT’S AUTHORITY BECOMES EFFECTIVE: authority becomes effective when my primary physician determines that I am unable to make my own health-care decisions unless I mark the following box.If I mark this box , my agent’s authority to make health-care decisions for me takes effect immediately. 4) My agent shall make health-care decisions for me in accordance with this power of attorney for health care, any instructions I give in Part 2 of this form, and my other wishes to the extent known to my agent.To the extent my wishes are unknown, my agent shall make health-care decisions for me in accordance with what my agent determines to be in my best interest. my personal values to the extent known to my agent. In determining my best interest, my agent shall consider If a guardian of my person needs to be appointed for me by a court, I nominate the agent designated in this form. available to act as guardian, I nominate the alternate agents whom I have named, in the order designated. 5) If that agent is not willing, able, or reasonably If you are satisfied to allow your agent to determine what is best for you in making end-of-life decisions, you need not fill out this part of the form.If you do fill out this part of the form, you may strike any wording you do not want. 6) I direct that my health-care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with the choice I have marked below:a) Choice Not To Prolong Life I do not want my life to be prolonged if (i) I have an incurable and irreversible condition that will result in my death within a relatively short time, (ii) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (iii) the likely risks and burdens of treatment would outweigh the expected benefits, ORb) I want my life to be prolonged as long as possible within the limits of generally accepted health-care standards. 7) Except as I state in the following space, I direct that treatment for alleviation of pain or discomfort be provided at all times, even if it hastens my death: 9) (If you do not agree with any of the optional choices above and wish to write your own, or if you wish to add to the instructions you have given above, you may do so here.)I direct that: (Add additional sheets if needed.) DONATION OF ORGANS AT DEATH (OPTIONAL) 10) Upon my death (mark applicable box) a) I give any needed organs, tissues, or parts, OR b) I give the following organs, tissues, or parts only c) My gift is for the following purposes (strike any of the following you do not want) (i) (ii) Therapy (iii)Research (iv) Education (OPTIONAL) 11) I designate the following physician as my primary physician: (name of physician) (address) (city) (state) (zip code) (phone) If the physician I have designated above is not willing, able, or reasonably available to act as my primary physician, I designate the following physician as my primary physician: (name of physician) (address) (city) (state) (zip code) (phone) * 12) A copy of this form has the same effect as the original. 13) Sign and date the form here: (date) (sign your name) (address) (print your name) (city) (state) (print name) (print name) (address) (address) (city) (state) (city) (state) ___________________________ (signature of witness) ___________________________ (signature of witness) (date) (date) Although the Patient Self-Determination Act (PSDA) and the U.S. Supreme Court’s landmark right-to-die decision, Cruzan v. Director, Missouri Dept. of Health, were significant developments at the federal level, they came well after states had begun to grapple with the legal issues related to end-of-life decisions. State law, in fact, is generally considered the most reliable source of guidance on advance directives. As a result, medical personnel and others may reasonably assume that an advance directive may only be used if a state statute permits. However, several legal experts with whom we spoke suggested that many statutory limitations on the scope of advance directives may be unconstitutional. When PSDA was passed in November 1990, 46 states had laws providing a statutory basis for some type of advance directive. Between 1990 and 1995, 45 states amended or enacted laws dealing with advance directives. As of March 1995, 46 states had laws providing for both living wills and appointments of health care agents. Of the remaining five states, two have laws providing only for living wills and three only for appointments of health care agents. The requirements and application of state living will and health care agent statutes vary significantly. Although health care agent statutes in 49 states permit an agent to make decisions when a patient is permanently unconscious, living will statutes in only 38 states include permanent unconsciousness as a qualifying condition. (Nancy Cruzan, whose care was at issue in the Cruzan case, was characterized not as terminally ill but as permanently unconscious.) Similarly, only about two-thirds of the states have statutory language permitting living wills or health care agents to withhold or withdraw artificial nutrition and hydration. Also, 34 states have living will statutes that explicitly forbid the withholding or withdrawal of life support from pregnant patients, and 14 states forbid health care agents from making such a decision. Table II.1 shows the variation among state living will and health care agent statutes. Although state legislation related to end-of-life decisions is widespread, there are legal issues that, at least in many states, remain largely unsettled: Are advance directives written in one state valid in another? Must an advance directive be in writing? Does a living will apply to emergency medical services? Who makes decisions if a patient has not designated a health care agent? Are advance directives binding on all physicians and institutions? What about “futile” treatment or assisted suicide? Some individuals are concerned that an advance directive that complies with the requirements of one state may not be honored in another state. Although we could not document such a problem, evidence suggests that an advance directive should be honored in any state, regardless of where it was originally executed. The statutes of 29 states explicitly recognize the validity of living wills that are in accord with either laws of their own state or another state. Similarly, 29 state statutes recognize the powers of health care agents appointed by documents executed in other states. Even beyond state statutes, a living will should be valid in any state because Cruzan and a long tradition of state courts have found that the constitutional right to refuse medical treatment is not lost upon incapacity. Just as a competent person has the right to refuse unwanted medical treatment in any state, an incompetent person’s previously articulated wish should also be honored in any state. On the other hand, we are unaware of any court that has held there is a constitutional right to appoint a health care agent although, in her concurrence in Cruzan, Justice O’Connor speculated that there may be such a right. Thus, an agent who attempts to exercise authority in one of the 22 states without a reciprocity provision in its health care agent statute is more apt to encounter some justifiable resistance. Courts have consistently held that a clearly and convincingly expressed oral statement of an individual’s treatment wishes should be honored. However, in part because PSDA defines “advance directive” to include only written instructions, medical personnel may erroneously assume that an incompetent individual’s previously expressed wishes must be in writing to have legal effect. Some states include a detailed form in their statute for use in drafting an advance directive, which may reinforce the belief that only written instructions are valid. However, if a patient’s clearly expressed treatment wishes generally must be followed even if they are not in writing, it should not matter whether written instructions follow the detailed form included in a state law. The PSDA definition of advance directives states that the form directives take may be specified by state statute or precedents set in court decisions. Legal experts we consulted said that clearly expressed treatment wishes should be honored whether or not they are in writing or follow a statutorily prescribed format; but until clarified in statute, confusion about the validity of oral instructions or what constitutes a valid advance directive is apt to continue. Another issue is the potential conflict between advance directive statutes and laws involving the provision of emergency medical services. In an emergency, it may not be clear that an individual has an advance directive. Even when emergency medical technicians are presented with a valid advance directive, they are frequently unwilling to comply unless they have authorization specifically applicable to them because they are generally required to administer life-saving procedures. This has resulted in seriously ill patients being resuscitated against their stated wishes and over the objections of their families. To address this issue, 25 states authorize nonhospital do-not-resuscitate orders. (Such orders, however, cover a narrower spectrum of treatments than typical living wills.) In Virginia, for example, certain individuals may complete a form ordering emergency medical technicians not to revive them. In Oregon, individuals who are terminally ill or permanently unconscious, and only those individuals, can wear bracelets saying “no CPR” (cardiopulmonary resuscitation). Most people believe that in the absence of a written advance directive, their family or partner will decide their final care. As of March 1995, 25 states have statutes providing for surrogate decision-making in the absence of an advance directive. These laws typically establish a hierarchy of related persons (similar to the order of inheritance) who, if the patient has not designated an individual to act as his or her health care agent, may make health care decisions for the incompetent patient. In states with surrogate decision-making laws, families are expected to make decisions consistent with the patients’ wishes. In some states, however, families have no legal right to make end-of-life decisions unless patients have explicitly given them that right. In Cruzan, the Court rejected the argument that the Constitution compels the state to accept the substituted judgment of close family members and to permit them to make medical decisions for an incompetent patient. This gives rise to concern that in states without surrogate laws, there may be a reluctance to rely on the guidance of family members when making end-of-life decisions about a patient. In legal terms, any provision of unwanted medical care is generally considered to be an assault on the patient. Yet, if a physician morally objects to the withholding or withdrawal of life-sustaining treatment from a particular patient, he or she cannot be compelled to be involved in that patient’s care. (Such a physician cannot abandon a patient until a new physician agrees to take over the patient’s care.) Similarly, a health care institution may refuse to honor a living will or the decision of a health care agent if it has established policies based on religious beliefs or moral convictions. PSDA requires both individual providers and health care institutions to inform patients upon admission if they cannot implement an advance directive as a matter of conscience. Although patients may be able to choose another physician who will honor their advance directive, they may have little meaningful choice about what organization will provide their medical care, especially in the event of an emergency. Legal experts we consulted suggested that provider organizations should be required to arrange an appropriate transfer when they are unwilling, as a matter of conscience, to implement an individual’s advance directive. Even so, transfers may not always be practical. Other provider organizations may be reluctant to admit an individual for the sole purpose of withholding life-sustaining treatment, and some communities may have only one hospital or nursing home. At least one court has held that when a transfer is not possible, the provider must comply with a patient’s clearly stated wishes regarding treatment. Although advance directives are frequently thought of as instruments only for facilitating the refusal of treatment, they can also be used to ensure that individuals receive all possible treatment. Yet, a conflict may arise when medical treatment requested in a living will or by a health care agent is considered futile (unnecessary or of no benefit) by the provider. Medical professionals may also disagree about when a medical treatment is truly futile. Some states have begun to address this issue through case law or statute. For example, Maryland’s 1993 advance directives law states that physicians do not have to provide treatment that is “medically ineffective or ethically inappropriate.” Another issue centers on states’ limiting the use of advance directives to only incapacitated individuals who are terminally ill or in a permanent vegetative state. Since a competent person always has the right to refuse treatment, some legal experts have suggested that an incompetent individual in any medical condition should be free to refuse treatment through living wills or health care agents. At some point, however, the line blurs between the right to refuse treatment and suicide, raising the issue of assisted suicide. Thirty-two states have laws that explicitly criminalize assisted suicide and 11 criminalize assisted suicide through the common law, while in 7 states the law concerning assisted suicide is unclear. Although a few states have considered allowing assisted suicide, there is no clear consensus on the issue. In 1994, Oregon became the first state to have an assisted suicide statute that specifically allows terminally ill patients to obtain lethal prescriptions. But this law, the result of a ballot initiative, has been blocked until a court can rule on its constitutionality. In 1995, a federal appeals court upheld as constitutional the state of Washington’s prohibition on physician-assisted suicide, overturning a lower court ruling. Recognizing the benefits of more uniformity among state advance directive laws, the National Conference of Commissioners on Uniform State Laws approved the model Uniform Health-Care Decisions Act(UHCDA) in 1993. Although UHCDA has been adopted in only one state, New Mexico, many states have enacted laws containing substantially similar provisions. (According to one legal expert we spoke with, by the time UHCDA was passed, most states already had advance directive laws that incorporate many UHCDA provisions.) Widespread adoption of UHCDA would not only lessen state variations discussed earlier, but could clarify a number of unsettled legal issues, including the following: An advance directive that complies with UHCDA would be valid regardless of where executed or communicated, which would ease concerns about portability. The appointment of a health care agent would have to be in writing, but an individual instruction, authorized in lieu of a living will, could be oral or written. Uncertainties about surrogate decision-making would be lessened by establishing a hierarchy for identifying an appropriate surrogate, including selection of a nonfamily member if no family member is available. Health care providers could decline to comply with a living will or other health care decision for reasons of conscience. Organizational providers could decline to comply only if the decision were contrary to a policy expressly based on reasons of conscience and the policy had been communicated in a timely fashion to the patient or person authorized to make health care decisions for the patient. An individual would not have to be terminally ill or in a permanent vegetative state for an advance directive to take effect. The authority of a health care agent would be effective whenever an individual lacks capacity unless otherwise specified in the instrument appointing the agent. Providers would not have to provide medically ineffective health care or care contrary to generally accepted medical standards. Rosamond Katz, Assistant Director, (202) 512-7148 Anita Roth, Evaluator-in-Charge, (410) 965-8964 Craig Winslow, Senior Attorney, (202) 512-8225 The first copy of each GAO report and testimony is free. Additional copies are $2 each. Orders should be sent to the following address, accompanied by a check or money order made out to the Superintendent of Documents, when necessary. Orders for 100 or more copies to be mailed to a single address are discounted 25 percent. U.S. General Accounting Office P.O. Box 6015 Gaithersburg, MD 20884-6015 Room 1100 700 4th St. NW (corner of 4th and G Sts. NW) U.S. General Accounting Office Washington, DC Orders may also be placed by calling (202) 512-6000 or by using fax number (301) 258-4066, or TDD (301) 413-0006. Each day, GAO issues a list of newly available reports and testimony. To receive facsimile copies of the daily list or any list from the past 30 days, please call (301) 258-4097 using a touchtone phone. A recorded menu will provide information on how to obtain these lists.

Summary: Pursuant to a congressional request, GAO provided information on the implementation of the Patient Self-Determination Act (PSDA), and the effectiveness of advance directives in ensuring a patient's desired care. GAO found that: (1) health care institutions and the Department of Health and Human Services (HHS) are generally complying with most PSDA requirements; (2) most health care providers inform patients of their right to have an advance directive, but fewer consistently document whether the patient actually received an advance directive; (3) HHS has incorporated PSDA provisions into Medicare and Medicaid provider requirements, expanded the Medicare handbook, and engaged in a limited public education campaign, but HHS has not informed Social Security recipients about advance directives as required by PSDA; (4) only 10 to 25 percent of Americans have documented their end-of-life choices or appointed a health care agent to do so; and (5) an advance directive decision takes into consideration the availability or specificity of a living will, family wishes, physicians' attitudes, and legal issues.