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INFLUENCE OF THE LEGAL ENVIRONMENT ON END-OF-LIFE CARE AND ADVANCE MEDICAL PLANNING

Overview of Advance Medical Planning

Over the past four decades, a lot of attention has been concentrated on advance or prospective health care planning as a mechanism for individuals to maintain a degree of control over their future medical treatment even if, at some point, they become physically and/or mentally incapable of making
and expressing important decisions about their own care. Advocates of ACP also suggest that it may help people and their families avoid unwanted court involvement in medical treatment decisions, conserve limited health care resources in a manner consistent with patient autonomy or selfdetermination (Halpern & Emanuel, 2012; Nicholas, Langa, Iwashyna, & Weir, 2011), and diminish the emotional or psychological stress on family and friends that occurs in difficult crisis circumstances.

Two chief types of ADs are available for use in prospective (before-thefact) health care planning. Statutes explicitly authorizing individuals to execute ADs have been enacted in every state; many of these state statutes (sometimes called “natural death acts”) are modeled on the Uniform Health Care Decisions Act adopted by the National Conference of Commissioners on Uniform State Laws (1993). In some other countries (Great Britain, for instance), ADs have been recognized by the courts even though they have not been codified in statutory form.

One legal advance planning mechanism is the proxy directive, usually a DPOA for health care. The proxy directive is an AD that enables an individual to voluntarily designate another person—called a health care agent, surrogate, proxy, or attorney-in-fact—to make health care decisions in the event that the principal (the individual who has delegated away decision-making authority) subsequently loses decision-making capacity through illness or accident. Many states have enacted statutes that designate a legal hierarchy of family members and other persons who may make decisions on behalf of decisionally incapacitated patients when no guardian has been appointed or instruction directive (discussed below) has been written; in those jurisdictions, a DPOA may clarify which person has the authority to decide when two persons otherwise would have equal status (such as the patient's siblings) within the hierarchy. In addition, a DPOA is valuable when a person prefers to name a nonrelative as the future decision maker. For instance, it is common in the gay community for individuals to appoint domestic partners or friends, rather than family members, as their health care agents.

Unlike the situation created with an ordinary power of attorney, the authority of an agent under a DPOA is not automatically ended when the principal subsequently becomes decisionally incapacitated. The agent's decision-making authority may become effective immediately (an immediate DPOA) upon execution of the document, or it may “spring” into action when a specifically delineated event (such as “when my physician certifies that I am unable to make my own medical decisions”) has taken place. The DPOA would then endure beyond that triggering event. The principal may terminate or revoke the arrangement at any time, so long as the principal remains mentally competent to do so.

One limitation of the DPOA device is the legal and practical requirement that the person who would like to delegate certain decision-making
authority to an agent actually have available a suitable, willing, and able person to whom to delegate that authority. The DPOA does not help people (the “unbefriended” population) who do not have someone else whom they can trust to make future personal decisions for them.

By contrast, an instruction (living will)–type AD documents an individual's desires about wanted, limited, or unwanted life-sustaining medical treatments (LSMTs) in case the person at some point becomes cognitively or emotionally incapacitated or is unable to communicate treatment wishes at all. These instructions may be detailed (in the sense of relating to specific medical treatments in particular clinical situations), general (such as “no extraordinary measures”), or phrased in terms of a patient's personal values (like “Life is sacred, so keep me alive forever regardless of pain or expense” or “Just don't let me suffer”).

Proxy and instruction directives are not mutually exclusive. Some AD documents combine the instruction and proxy elements. Only a presently capable person may execute a valid AD. The AD becomes effective only when the person creating the AD subsequently lacks decisional capacity concerning a particular medical treatment issue; if the patient currently possesses sufficient decisional capacity and ability to communicate choices, there is no need for anyone to turn to an AD for advice.

Consistently, courts and state legislatures have made it clear that AD statutes are not intended to be the exclusive means by which patients may exercise the right to make future decisions about medical treatment. For example, a patient might convey concerns regarding future medical treatment orally to the physician during an office visit, with the physician documenting the patient's words in the medical chart. When that person subsequently becomes unable to make personal medical decisions, his/her oral instructions are just as legally valid as would be a written document executed in compliance with all the formalities contained in the state's AD statute. Nonetheless, even though a legally valid AD may be oral, it is much more likely to be followed by the health care system if it takes the form of a written document.

Problems With Advance Directives

Despite substantial positive public attention, unfortunately, psychological resistance to the contemplation of illness and death, coupled with inertia and legal complexities complicating the execution of an AD, keeps the rate of AD completion low among the general public (Bravo, Dubois, & Wagneur, 2008). Personal characteristics may influence AD completion rates among members of different population groups. Although nursing home residents are more likely to complete an AD than community-dwelling older persons, the PSDA expressly forbids any health care provider from requiring a patient/ resident to execute an AD as a condition of admission or receiving services. Moreover, even when the law is clear and the patient has timely executed an instruction directive, health care providers often are unclear about when the living will applies and are uncomfortable about deciding when a patient is on a dying trajectory that warrants triggering the declaration's instructions. Also, health care providers sometimes find a living will's instructions either too broad or too narrow to provide useful guidance in a specific situation. Misunderstandings may be exacerbated by the reluctance of many physicians to engage patients in meaningful EOL discussions in a timely manner (Mack et al., 2012).

Thus, there is a significant body of evidence that, often, patients' previously stated wishes concerning LSMT are not respected and implemented by health care providers, and very often they are also not followed by families that are supposed to be acting as the patient's surrogate. Critically ill patients frequently receive more aggressive medical treatment than they had earlier said they would want (Fagerlin & Schneider, 2004).

State AD statutes specifically excuse a health care provider who decides, for reasons of personal conscience, not to carry out the explicitly stated treatment preferences of a patient or surrogate, so long as that provider does not impede efforts to have the patient transferred to the care of a different provider who is willing to respect the patient's AD. In the same vein, courts have declined to hold health care providers liable for failure to follow a patient's or surrogate's instructions to withdraw or withhold particular forms of treatment, on the grounds that providing life-prolonging intervention cannot cause the sort of injury or harm for which the tort system is designed to provide recognition and monetary compensation.

 
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