Medical decisionmaking for older adults in institutional settings: is beneficience dead in an age of risk management?

• Author: Kapp, Marshall B.

The regulation of institutional long-term care (referred to as nursing facilities, or NFs, in this article) in the United States today is extensive and complicated. Constant provider concern about legal survival and financial viability within this complex, omnipresent regulatory environment has led to what might be characterized as an "ethical lobotomizing"(1) of NF management, care staff, and governance personnel. That is, parties responsible for caring for NF residents, who generally are the oldest and most frail members of society, often are influenced in their daily decisions and actions far less by a thoughtful consideration of ethical principles and consequences than by calculations for avoiding regulatory and judicial sanctions.

This article explores the tension within the NF context between ethical care, particularly care built on the precept of beneficence, or doing good, on one hand, and provider concentration on legal and financial risk management, on the other. Special attention is paid to the unintended consequences of regulation in this sphere, leading to formalism masking ethical neglect, as well as to the potential and actual roles of institutional ethics committees. A few modest possibilities for addressing the described tension effectively are suggested.

The Regulatory Octopus

The approximately fifteen thousand NFs in the United States currently are regulated from a variety of directions. This regulatory octopus is an understandable public reaction--albeit arguably an overreaction--to an industry that has been tarnished with scandals for much of its history.(2)

The vast majority of NFs now participate in Medicare(3) and Medicaid(4) and therefore must comply with federal requirements contained in the Nursing Home Quality Reform Act, passed as part of the Omnibus Budget Reconciliation Act of 1987 (OBRA 87),(5) and in OBRA's implementing regulations(6) in order to be compensated for the care of residents financed by these two programs. Nationally, Medicaid alone paid more than $28 billion to NFs in 1991, making it by far the major third-party payment source for institutional long-term care services.(7) These requirements cover every aspect of administration, care, and quality of life within the institution, including (as will be discussed below) the rights of residents.

In addition to federal requirements tied to funding, NFs are concurrently subject to licensure requirements imposed by each individual state. These mandates, especially regarding resident rights, often exceed those imposed on the federal level.(8) NFs are also heavily regulated under state and local fire(9) and building codes and similar business-related safety provisions. In their role as employer, NFs fall within state, federal, and local labor law and occupational health (e.g., precautions against exposure to blood-borne pathogens)(10) provisions.

Private organizations, most notably the Joint Commission on Accreditation of Healthcare Organizations (JCAHO),(11) establish standards that NFs may voluntarily meet in order to obtain certification. The incentive to pursue such accreditation may intensify in the future if the federal government grants "deemed status" to private organizations for purposes of Medicare and Medicaid approval.(12)

Long-term care providers must also be concerned about potential malpractice liability to residents or their representatives predicated on tort and breach of contract theories.(13) Personal injury lawsuits for civil damages brought against NFs have been relatively uncommon in the past, but providers are aware that this legal environment is changing as the plaintiffs' bar discovers this ripe area and courts show more willingness to award large noneconomic and punitive damages for patterns of abusive or neglectful treatment.(14)

Provider anxiety about this regulatory atmosphere is exacerbated by the resident advocacy network that overlies the NF industry today. The Older Americans Act(15) requires that every state (as a condition of receiving OAA funding) establish a long-term care ombudsman program. The state may operate the program directly, or it may contract with a local government agency or private, nonprofit organizations.(16)

Ombudsman programs are empowered to enter NFs and may perform a variety of functions within them, including (1) mediation of resident/facility disagreements; (2) mediation of problems between a resident and someone other than the NF, such as a public or private agency, family member, or other resident; (3) advocacy against the NF in the traditional, adversarial, confrontational sense; and (4) the compilation and public dissemination of information, including grievance history, regarding particular NFs.(17) Ombudsman programs frequently work closely with local legal advocacy organizations and private attorneys.

It is against this regulatory backdrop, and the provider state of mind and consequent behavior that it engenders,(18) that we must examine the impact of selected recent legal developments on the lives of the persons who are the intended beneficiaries of those enactments.

The Tyranny of Unintended Consequences: Formalism Masking Ethical Neglect

OBRA's Emphasis on Informed Choice

Among its other provisions establishing and/or reinforcing the civil rights of NF residents, OBRA 87 assures that the resident or his or her legally authorized (under applicable state law) proxy have decisional rights regarding accommodations, medical treatment, personal care, visits, written and telephone communication, and meetings with others.(19) This requirement of voluntary, informed choice by a cognitively capable decisionmaker obviously is intended to effectuate the laudable ethical principle of autonomy or self-determination and thus appears uncontroversial on its face in a 1990s American culture that assigns high, perhaps premier, value to this principle.

The practical problem, however, with effectuating this noble goal lies in the reality that a significant proportion(20) (estimated at more than half) of the 1.6 million NF residents in this nation suffer from, in addition to physical frailty, a substantial degree of cognitive or emotional impairment, making meaningful direction of a rational decision-making process involving complex life choices difficult, if not impossible.(21) Only a small percentage of these individuals with questionable decisional capacity, or even rather clear lack of capacity, have been the subject of formal guardianship proceedings leading to the judicial appointment of a surrogate decisionmaker.

A few of these persons will have executed, while previously more cognitively intact, a proxy advance directive such as a durable power of attorney delegating decisional authority to a proxy agent (attorney-in-fact) previously selected by the resident.(22) Most residents do not avail themselves of this opportunity despite authorizing legislation in every jurisdiction. Even when proxy directives have been timely executed, they often are far from a panacea for ethical surrogate decisionmaking (as will be discussed below).

For residents with de facto seriously questionable or absent personal decisional capacity regarding important choices--i.e., residents in the cognitive "gray zone"--and who have neither been formally adjudicated incompetent nor earlier executed a valid proxy directive, NFs have been rendered by OBRA considerably more nervous about clearly identifying (especially in the resident's medical record, which will be inspected by state surveyors) the third party who possesses definitive, unimpeachable legal authority to make decisions on the resident's behalf. At least according to widespread anecdotal reports thus far, this anxiety is encouraging many NFs to pressure families and other resident sponsors to initiate formal guardianship proceedings concerning residents in order to clarify the legal authority question.

While potentially benefiting NFs' anxiety level, a proliferation of avoidable guardianships (particularly of the plenary or complete sort) seems in many cases to be an unnecessarily restrictive intrusion into resident autonomy and an unwise infliction of expense, time commitment, and emotional turmoil on all parties. Given the devastating consequences to a ward's legal adult status of being judicially declared incompetent, such guardianships are likely to accomplish more in providing the NF with psychological and risk management comfort than in assuring ethical protection for the vulnerable resident.

Especially at risk are the substantial number of cognitively impaired NF residents who have no willing, available family members or friends as logical candidates to act as decision-making proxies under either a court order or advance directive. Demographic factors point to a proliferation of individuals in this category over the coming years. These "unbefriended" residents exist within a sort of limbo status, at jeopardy of "falling through the cracks" in terms of important decision-making opportunities. They may be in danger of delay or denial of appropriate medical treatment at the hands of providers who are intimidated to act in the absence of either a definitively authorized legal decisionmaker or a serious medical emergency justifying an exception to the general informed consent doctrine.(23) Even in places where public guardianship systems or volunteer guardianship programs(24) attempt to fill this gap, problems concerning funding levels, excessive workloads, and program continuity make adequate representation of unbefriended resident interests uncertain.

OBRA's emphasis on resident autonomy, as exercised through a valid decisionmaker, has a praiseworthy aim. The unintended consequence of requiring either a mentally capable resident or a legally authorized surrogate, though, may well be a diminution of beneficent behavior on the part of NF staff. Previously, NF staff, especially nurses and aides involved in the most intimate...