Legal anxieties and end-of-life care in nursing homes.

• Author: Kapp, Marshall B.

Abstract: Many persons spend their final days as nursing home residents. It has been suggested that one set of factors powerfully and unfavorably influencing the quality of end-of-life (EOL) care provided in American nursing homes involves the anxieties that nursing home providers experience regarding potential negative legal entanglements and repercussions associated with the provision of EOL care to their residents. This article critically examines the hypothesis that the quality of EOL medical care provided in nursing homes often is skewed in a perverse way because providers are driven unduly by legal apprehensions. The author offers practice and policy recommendations for trying to resolve or mitigate the tension present between legally defensive practice (real or perceived) by nursing homes, on one hand, and ethically optimal EOL care, on the other.

**********

In the United States, individuals with serious, chronic physical and mental health problems and difficulties in carrying out activities of daily living have available to them an increasing array of services (e.g., home care, assisted living facilities, adult day care) that allow them to avoid or at least substantially postpone admission into a nursing home. Consequently, the acuity level of persons who do need to enter nursing homes today, because they are not capable of being cared for adequately in home and community-based settings, is considerably more severe than that found among nursing home residents even a short time ago. (1) Given the nature of its present resident population, the modern American nursing home in large part may be accurately characterized as a place where many people go to die. (2) "The probability that a nursing home will be the site of death increased from 18.7% in 1986 to 20% by 1993," and "[c]urrent health care trends, including aging of the population and pressures to decrease hospital and home health costs, are likely to promote the use of nursing homes as a site for terminal care. (3) "Most who enter a nursing home and stay for more than a few months will die there or after transfer to a hospital. They will not again live at home." (4)

According to a leading geriatrician:

Despite the enshrinement of dying at home as a sort of "gold standard" for palliative care, dying at home is not ideal for every patient. Patients with functional impairments and a serious progressive illness who lack family or other caregivers who can meet their needs are unlikely to be well-served at home and may elect to move to a nursing home for the final months or years of life. (5) The quality of medical care provided to individuals near the end-of-life (EOL) (that is, to those persons who are predicted to die within a relatively short period of time, usually less than six months, with or without aggressive medical intervention) has become a keen matter of inquiry and concern over the last several years. (6) Given the number of persons who die in nursing homes, the questionable quality of EOL care in that setting particularly is a subject of intense interest to those who are committed to improving the health care system's responsiveness to the comprehensive needs of dying persons (those predicted to have a short period of time to live) and their loved ones. (7) In a survey of Florida nursing home nurses and Directors of Nursing, nursing homes were rated significantly lower than hospice in performance of both pain management and psychosocial support for dying persons. (8) An Institute of Medicine study found "that nursing home and other long-term care organizations are 'deeply challenged' by end-of-life care and decisions and that even 'natural death' can be an occasion for sorrow and anxiety." (9)

It has been suggested that one set of factors powerfully and unfavorably influencing the quality of EOL care provided in current nursing homes involves the anxieties that nursing home care providers (namely, medical directors, attending physicians, nurses, and administrators) experience regarding potential negative legal entanglements and repercussions associated with the provision of EOL care to their residents. As stated by one legal practitioner with substantial health law experience:

Long-term care facilities are likely to be the laboratories for most legal and ethical decisions at life's end. This is due in large part to the fact that most residents who are placed in nursing homes will be there until their lives are over. Although the goal of nursing home care is to encourage the well-being of residents so that they may return home, the sad reality is that most will not. Because nursing homes will most frequently face decisions regarding refusal or withdrawal of treatment in the face of medical futility, nursing home providers will face a myriad of legal and ethical issues.... Complicating matters further is the "catch-22" of legal liabilities when the continuation of treatment constitutes resident abuse, but the discontinuation of medical treatment may give rise to a wrongful death claim. This is but one of many issues faced each day by nursing homes. (10) According to another set of authors, "[A] lack of knowledge of legal guidelines, or perhaps worse yet, a mistaken belief about what is legal may be the most serious impediment to quality care at the end of life." (11)

The purpose of this article is to critically examine the hypothesis that the quality of EOL medical care provided in nursing homes often is skewed in a negative way because providers are unduly driven by legal apprehensions. (Thus, this article does not delve in any depth into other potential explanations for objectionable EOL care, such as insufficient facility staffing.) In the next section, the methodology employed to carry out this examination is briefly summarized. This is followed by a discussion of the sources or etiology of nursing homes' anxiety about legal repercussions, the organizational levels at which legal fears are generated, the specific sorts of legal risks about which nursing home providers are fearful, and-most importantly--how providers' perceptions about legal requirements, prohibitions, and potential adversities manifest themselves in the context of EOL medical care in nursing homes. The extent to which providers' legal apprehensions are well-founded versus those based on mythology and misunderstanding is then explored. In the final section, a set of practice and policy recommendations is set forth for trying to resolve of mitigate the tension present between legally defensive practice (real or perceived) by nursing homes, on one hand, and ethically optimal EOL medical care, on the other.

Methodology

Information and insights for this qualitative research project (12) underlying this article were derived primarily from four sources. First, a thorough review of the (rather limited) (13) relevant legal, ethical, and health care literature was conducted. Pertinent federal and state law was identified and analyzed. Structured interviews with a substantial number of nursing home medical directors, administrators, nursing directors, resident advocates, insurers, regulators, and attorneys (some of whom are former regulators) were carried out either in-person or by telephone. Some particular interviewees are not identified in this article by name, because those interviews were conducted with the promise that interviewees' identities would remain confidential. However, direct quotes taken from those interviews are presented here in quotation marks. Finally, the database for this project includes responses to inquiries made by the author on listserves sponsored by the Long Term Care section of the American Health Lawyers Association (14) and the Last Acts initiative of the Robert Wood Johnson Foundation. (15)

This article makes no pretense of quantitative precision in the reporting of this project's findings. Instead, the findings are essentially impressionistic, aided by the interviews conducted but not purporting to quantitatively report the elements of those interviews rigorously Thus, as used in this article, terms such as "many," "most," "some," and "few" should be interpreted more of less flexibly according to the meanings ascribed to them in everyday parlance. When applicable, findings based on interviews are supported by citations to literature consistent with those findings.

Findings

Provider Apprehensions and Their Behavioral Manifestations

There is a high and persistent level of legal anxiety in the American nursing home industry generally today; the Executive Director of a state nursing home association has described the overall environment as "an unprecedented regulatory jihad." (16) This generalized trepidation has permeated throughout nursing homes at every administrative and direct care level; according to a prominent medical director, "It's in the culture, it's in the air." The present article deals with the ways in which the perceived general adverse legal climate exerts an impact--and it certainly does--on EOL care particularly A substantial amount of anxiety is felt by administrators, medical directors, attending physicians, nurses, and nursing aides involved in any way in making EOL decisions and/or providing EOL care to residents, although different participants may have rather different specific perspectives on their own legal dangers.

Nursing home providers' anxieties about their own legal exposure associated with EOL care emanate from several sources. These apprehensions stem chiefly from the constant barrage of negative coverage of nursing home conditions generally in the print and electronic media, (17) high malpractice insurance premiums and other gloomy indicators from their insurers (e.g., insurers refusing to underwrite malpractice policies at all in certain geographic areas), inflammatory and ubiquitous advertisements to potential plaintiffs by personal injury attorneys, advertisements to nursing home professionals for...