ADVANCE DIRECTIVES FOR HEALTH CARE

Since the mid-1970s, much attention has been focused on the topic of advance or prospective health care planning. This activity has been promoted as a way for individuals to maintain some control over their future medical treatment even if they become physically and/or mentally unable to make and convey important decisions regarding issues of care. Advocates of advance health care planning also claim that it may help older persons and their families avoid court involvement in medical treatment decisions, conserve limited financial resources in a way that is consistent with patient autonomy or self-determination, and reduce the emotional or psychological burdens on families and friends in difficult crisis situations.

There are two main legal mechanisms available for use in prospective (i.e., before-the-fact) health care planning. One is the proxy directive, ordinarily in the form of a durable power of attorney (DPOA). This legal instrument names a proxy or agent who is authorized to make future medical decisions on behalf of the individual delegating the authority (namely, the principal or maker) in the event that the principal/maker later is unable to make decisions personally. The second legal device presently available for advance health care planning is the instruction directive, usually referred to as a living will, health care declaration, or natural death declaration.

In the United States, these legal mechanisms have their basis in various statutes enacted by state legislatures. In some other countries (e.g., England), advance directives have been recognized by the courts even though they have not been codified in the form of statutes.

Proxy directives

The standard power of attorney (POA) is a written agreement authorizing a person (named an agent or attorney-in-fact) to sign documents and conduct transactions on behalf of the principal or maker who has delegated away that authority. The principal can delegate as much (e.g., a general delegation) or as little (e.g., specifically delineating what types of choices the agent may and may not make) power as desired. The principal may end or revoke the arrangement at any time, as long as the principal remains mentally competent to do so.

The POA in its traditional form does not work well as a method for dealing with medical decision-making authority for older persons on a voluntary, prospective basis. The ordinary POA ends automatically when the principal who created it dies or becomes mentally incompetent. The theory underlying this is that, because a deceased or incompetent person no longer has the ability to revoke the POA, the law should exercise that right immediately for the principal. Thus, an older person who establishes a standard POA to help in managing medical affairs would be cut off from such assistance at exactly the time when assistance is needed the most.

In an effort to get around this problem, every state legislature has enacted legislation authorizing citizens to create (or execute) a durable power of attorney (DPOA). In contrast to the ordinary POA, the effect of a DPOA may endure or continue beyond the principal's later incapacity as long as that is what the principal intended in executing the DPOA.

To remove any ambiguity about the applicability of the DPOA concept to the area of medical decision making (including choices about life-sustaining medical treatments such as mechanical ventilators, dialysis, antibiotics, and cardiopulmonary resuscitation), almost every state has passed legislation that explicitly authorizes the use of the DPOA in the medical context. Some statutes use terminology such as health care representative, health care agent, or health care proxy. In addition, a number of states use a comprehensive advance directive statute to expressly authorize competent adults to execute both proxy and instruction directives; other states have separate statutes for each type of advance directive. Under most state laws, the health care providers for the principal who has executed a DPOA are disqualified from serving as agents under the DPOA. That statutory disqualification is intended to help avoid even the appearance, let alone the reality, of a conflict of interest when decisions have to be made about medical treatment for an incompetent patient.

Proxy directives provide the advantage, for both patients and their health care providers, of legally empowering a living, breathing advocate for the patient who can engage in discussions and decisions regarding medical treatment based on the most current information and other considerations. The proxy directive is irrelevant, however, for older adults who do not have available someone else whom they can trust to make future medical decisions for them.

Instruction directives

All but a few states have enacted legislation regarding instruction directives. Such statutes are often termed natural death legislation. Specific provisions vary from state to state. However, the common theme of natural death legislation is support of a patient's right, while the patient is still competent, to sign a written directive concerning the patient's wishes about the use of life-saving or life-sustaining medical treatments in the event of later serious illness and an incapacity to make decisions. Such a directive, often called a living will, protects or immunizes involved health care professionals and treatment facilities against possible civil or criminal liability for withholding or withdrawing medical treatments under the conditions specified in the directives.

Ordinarily, the principal is presumed to have the mental capacity to execute a health care directive and to revoke it, absent substantial evidence to the contrary. Just as is true for the DPOA, the legal force of an instruction directive goes into effect only when the patient, after signing the document, later becomes incapable of making medical decisions. In most cases, it is left to the individual's personal physician to determine when that person has become incapable of making decisions and, therefore, when the advance directive becomes effective.

Most advance directive statutes and forms use the approach of either check-off options for particular forms of treatment (e.g., "I do/do not want to be given antibiotics if I have a life-threatening infection") or extremely general standardized language to express preferences regarding particular forms of medical treatment (e.g., "If I am terminally ill, do not use any extraordinary or heroic medical measures to keep me alive."). However, a few states have taken the legislative approach of providing a more open-ended format for giving health care instructions. This creates an opportunity for individuals to write directives that express their values, beliefs, and preferences in their own words by responding to questions such as, "What would be your most important goal if you were critically ill, to stay alive as long as possible or to be made as comfortable and pain-free as possible?"

Restrictive advance directive statutes

In their advance directive statutes, many state legislatures have attempted to draw distinctions between artificial sustenance (i.e., feeding and hydration tubes inserted either surgically in the patient's stomach or manually through the patient's nose and throat), on the one hand, and other forms of life-sustaining medical treatment (e.g., ventilators, antibiotics) on the other. Specifically, many statutes try to make it more difficult procedurally for families or other proxy decision makers for incompetent patients to refuse or withdraw feeding and hydration tubes than to refuse or withdraw other forms of life-sustaining medical treatment. Advocates for these legal provisions sincerely believe they are necessary to protect especially vulnerable patients from unfair undertreatment; nonetheless, advance directive statutes that discriminate on the basis of the type of medical treatment being refused by the patient or surrogate are probably unconstitutional.

The courts and legislatures have consistently made it clear that state advance directive statutes are not intended to be the only means by which patients may exercise their right to make future decisions about medical treatment. For example, a patient might express wishes regarding future medical treatment orally to the physician during a medical appointment, with the physician recording the patient's words in the medical chart. When that patient later becomes incapable of making medical decisions, the patient's oral instructions are just as valid legally as would be a written document executed in compliance with all the statutory formalities found in the state's advance directive statute.

Enforcing advance directives

Presumably, most patients who express their wishes regarding future medical treatment by executing advance directives do so because they want and expect those wishes to be respected and followed. There is a substantial body of data, though, indicating that very often the stated wishes of patients regarding life-sustaining medical treatment are not respected and implemented. In actuality, critically ill patients frequently receive more aggressive medical treatment than they previously had said they would want.

State advance directive statutes all excuse a health care provider who chooses, for reasons of personal conscience, not to implement a patient's (or proxy's) expressly stated preferences regarding life-sustaining medical treatment, as long as that provider does not interfere with the patient being transferred to a different provider if that is what the patient or proxy wish. In the same vein, courts have refused to hold health care providers legally liable for failing to follow a patient's or proxy's instructions to withdraw or withhold particular forms of treatment, on the grounds that providing life-prolonging intervention can never cause the kind of injury or harm for which the legal system is designed to provide financial compensation.

Institutional policies and procedures

Congress enacted the Patient Self-Determination Act (PSDA) in 1990, codified at 42 United States Code §§ 1395cc(a)(1) and 1396a(a). This federal law applies to all hospitals, nursing homes, hospices, home health agencies, health maintenance organizations (HMOs), and preferred provider organizations (PPOs) that participate in the Medicare and Medicaid programs. Among other things, the PSDA requires each covered health care provider to adopt a formal policy, consistent with relevant state law, regarding how it will handle advance directives. The provider must make a copy of its policy available to each new patient at or before the time of admission or enrollment. In addition, the PSDA requires the health care provider to ask at admission or enrollment whether the patient has executed an advance directive. If the answer is no, the provider must offer the patient the chance to execute an advance directive then (if the patient is still mentally capable of doing so).

Do not orders

Many acute and long-term care providers have developed and implemented written protocols regarding physician orders to withhold particular kinds of medical treatments under specified circumstances taking place at some time in the future. Such orders are a variety of advance directive, and ordinarily are written by the physician with the agreement of the competent patient or the incompetent patient's proxy. Much attention has focused on Do Not Resuscitate (DNR) orders to withhold cardiopulmonary resuscitation (CPR) in the event of a patient's cardiac or respiratory arrest. Other forms of prospective physician instructions to withhold or limit life-sustaining medical treatments, such as Do Not Hospitalize or Do Not Intubate orders, also may be entered in the patient's medical record. The PSDA requires covered health care providers to adopt DNR policies.

In many places, policies and procedures for withholding potential life-sustaining medical treatments, such as CPR, from dying home-care patients have also been developed. Over half the states have passed statutes that explicitly authorize DNR, or No Code, orders to be applied in situations of cardiac or respiratory arrest taking place outside of a health care institution. Such orders, written in advance by the physician in consultation with the patient or proxy, would allow emergency medical personnel who are called to a dying patient's home to refrain from making an attempt to resuscitate the patient.

Marshall B. Kapp

See also Autonomy; Competency; Geriatric Medicine; Refusing and Withdrawing Medical Treatments.

BIBLIOGRAPHY

American Medical Association Council on Ethical and Judicial Affairs. "Optimal Use of Orders Not to Intervene and Advance Directives." Psychology, Public Policy, and Law 4 (1998): 668–675.

Cantor, N. L. "Making Advance Directives Meaningful." Psychology, Public Policy, and Law 4 (1998): 629–652.

King, N. M. P. Making Sense of Advance Directives, rev. ed. Washington, D.C.: Georgetown University Press, 1996.

Liang, B. A. Health Law & Policy. Boston: Butterworth-Heinemann, 2000.

Lynn, J., and Harrold, J. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999.

Meisel, A. The Right to Die. 2d ed. New York: Wiley Law Publications, 1995.

Rich, B. A. "Personhood, Patienthood, and Clinical Practice: Reassessing Advance Directives." Psychology, Public Policy, and Law 4 (1998): 610–628.

Ulrich, L. P. The Patient Self-Determination Act: Meeting the Challenges in Patient Care. Washington, D.C.: Georgetown University Press, 1999.

INTERNET RESOURCES

Partnership for Caring. www.partnershipforcaring.org A national organization dedicated to public education and advocacy regarding the quality of care provided to individuals who are approaching the end of life.