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.