Advance Medical Care Planning: The Legal Environment
Marshall B. Kapp
The actual and perceived legal environments (which are not always synonymous) in the United States exert a powerful influence on the provision of medical services to patients in end-of-life (EOL) situations. Legal rights and risks, both real and misunderstood, may either promote or inhibit the effective use of advance directives (ADs) as mechanisms of sustaining patients' personal autonomy.
This chapter first briefly outlines the contemporary American legal climate pertaining to EOL decision making. It then identifies and analyzes the various ways in which the legal environment facilitates or impedes particular forms of advance care planning (ACP), and most importantly how health care providers' legal anxieties impact the likelihood that ADs will have the effect of actually assuring that patients' wishes about EOL care get honored in practice. In light of identified deficiencies in the ACP status quo, the chapter concludes with suggestions for a legal alternative to existing planning mechanisms, specifically focusing on the Physician Orders for Life-Sustaining Treatment (POLST) Paradigm, which provides for a signed physician's order regarding EOL care for persons with serious, life-threatening illness.
THE CONTEMPORARY LEGAL ENVIRONMENT
The legal environment surrounding EOL decision making in the United States has been evolving since the 1976 Karen Anne Quinlan case (Matter of Quinlan, 1976) brought the matter clearly into the public consciousness. This legal environment is largely a product of statutes enacted by Congress and individual state legislatures, particularly regarding ADs. However, statutes must be consistent with principles contained in the federal and various state constitutions; these documents, as their provisions are interpreted and applied by the courts, are Americans' primary source of individual rights and constraints on government powers.
The 1990 case of Nancy Cruzan (Cruzan v. Director, Missouri Department of Health, 1990) is still the only U.S. Supreme Court decision that directly decides the issue of discontinuing life-prolonging medical treatment for a particular person. Cruzan was an automobile accident victim who was kept alive in a permanent vegetative state within a government (state of Missouri) long-term care facility through the use of feeding and hydration tubes. Her parents asked that this intervention be discontinued, a request they believed was consistent with the patient's previously expressed (although not formally documented) wishes. The attending physicians refused to honor this request, and the Missouri Supreme Court denied the parents' petition to discontinue treatment.
On appeal, the U.S. Supreme Court held that a mentally capable adult has a fundamental constitutional right, under the liberty provision of the Fourteenth Amendment's Due Process clause, to make personal medical decisions, even regarding refusal of artificial feeding and hydration. For patients with insufficient cognitive and emotional ability, however, the Court ruled that the state's legitimate interest in preserving life is strong enough to permit the state, if it so chooses, to require “clear and convincing” evidence—prior to following a surrogate's discontinuation instructions—that the patient would want that treatment withdrawn if the patient were currently able to make and express an autonomous choice. Ordinarily, a written declaration made by the patient while the patient was still cognitively and emotionally capable would provide sufficient evidence of the patient's treatment preference in the event of subsequent incapacity. Under the Cruzan decision, states also are free to set lower standards of proof than “clear and convincing” evidence for incapacitated patients, namely proof by a preponderance of the evidence (in other words, greater than a 50% likelihood), but not many states have chosen to avail themselves of this opportunity.
One form of treatment limitation around which there is substantial agreement is the do not resuscitate (DNR)—also known as do not attempt resuscitation (DNAR) or no code—order, which instructs caregivers not to initiate CPR for a patient who suffers a foreseeable cardiac arrest. There have been very few reported legal decisions regarding this topic. Nonetheless, the prevailing rule is that a decisionally capable patient has the right to refuse CPR, and that surrogates may choose to forego CPR for a patient if the likely burdens of this intervention to the patient would seriously outweigh any expected benefits (e.g., mere continued existence until the next arrest). As with all medical decisions, a DNR order should be written by the physician only after a thorough
consultation with the patient or surrogate and should be clearly documented in the medical record (Westphal & McKee, 2009). A DNR order may be folded into a more comprehensive POLST (discussed below).
The most vigorously disputed issue in the treatment limitation arena is still the status of artificial feeding and hydration (Wick & Zanny, 2009). The courts have been unanimous in holding that artificial feeding tubes (of all kinds) are merely another form of medical intervention that may be withheld or withdrawn under the same circumstances that would justify withholding or withdrawal of any other type of medical intervention such as a respirator, dialysis, or antibiotic use. Major medical professional groups endorse this position (Truog et al., 2008). The contrary position is that feeding and hydration, even when they can be achieved only through tubes surgically or forcibly inserted into the patient's body, are fundamentally different and more morally elemental than medical treatment, and therefore they should be maintained as long as they might physiologically keep the patient alive. A number of state legislatures reflect this argument in their living will or durable power of attorney (DPOA) statutes (discussed below) that are intended to severely constrain the rights of patients and surrogate decision makers to authorize the removal of feeding tubes (Tucker, 2009). Both the practical wisdom and the constitutionality of these purported restrictions are extremely questionable, but a fuller discussion of this matter is beyond the scope of the present chapter.
The federal Patient Self-Determination Act (PSDA), Pub. L. 101–508, Title IV, §§ 4206, 4751, went into effect in 1991. The PSDA mandates that hospitals, nursing homes, home health agencies, hospices, health maintenance organizations, and preferred provider organizations participating in the Medicare and Medicaid programs perform the following actions at the time a person is admitted or enrolled: (a) provide written information to individuals about their right to make their own medical decisions to the extent guaranteed by applicable state law, and make available to them the organizational policy for effectuating that right for the organization's patients; (b) ask patients whether they have completed an AD already and, if the response is yes, have a system for recording the patient's AD; (c) offer currently capable individuals a chance to execute an AD if they have not previously done so; (d) not discriminate in the provision of care based on the presence or absence of an AD; (e) create a system to assure compliance with relevant state laws on medical decision making; and (f) educate institutional/organizational staff and the community about patients' rights pertaining to medical decision making.
When the patient or surrogate refuses aggressive, technologically intensive medical interventions, the physician nonetheless has the legal obligation to offer basic palliative (comfort, pain control, and emotional support) and hygiene measures (Imhof & Kaskie, 2008). Failure to do so could constitute negligence or form the basis for professional discipline. Good palliative care
may sometimes include the practice of palliative sedation (also called total, terminal, or controlled sedation) for distress or suffering during the dying process that cannot otherwise be treated satisfactorily (Mularski et al., 2009). In every state, it is a criminal offense (as a form of homicide) for a physician to engage in positive or affirmative actions that are intended to speed up a patient's death (such as administering a lethal injection), even if a competent patient requested such action (Stern & Difonzo, 2009). Similarly, in every state except Oregon, Vermont, and Washington (Drum, White, Taitano, & Horner-Johnson, 2010) (and possibly Montana), it is criminal for a physician to go along with a patient's request that the physician supply the patient with the means to hurry up his or her own death (such as writing a prescription for a lethal dose of a medication, knowing fully well that the patient intends to commit suicide by taking that lethal dose) (Bollman, 2010). The U.S. Supreme Court has unanimously rejected the assertion that individuals have a federal constitutional right to physician-assisted death
(PAD) (Vacco v. Quill, 1997; Washington v. Glucksberg, 1997).
Conversely, a patient, or more usually the patient's family, may insist on initiating or continuing medical treatment (“doing everything possible”) that the clinician believes is futile in terms of patient benefit. Neither a patient nor a family possesses a legal right to demand, nor does a physician owe a duty to provide, nonbeneficial medical treatment (Cantor, 2010; Truog, 2008–2009; Whitmer, Hurst, Prins, Shepard, & McVey, 2009). On the rare occasions when courts have become involved prospectively with the futility issue, the judicial opinions generally have been confusing, inconsistent, and poorly reasoned. However, no court has ever held a provider liable after the fact for failure to begin or perpetuate futile interventions for a critically ill patient, even when the family was insisting on doing everything technologically possible. In practice, clinicians usually seem to take the path of least resistance in such circumstances and “treat the family,” often out of misapprehension about potential liability exposure. In the vast majority of cases, better physician–family communication, in which the realistic (that is, negative) implications of “doing everything possible” are clearly delineated, can avoid serious disagreement over how to proceed.