Legal Anxieties and End-of-Life Care in Nursing Homes

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 or 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 project12 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 Association14 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 or 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 risk management products portrayed as desperately needed,18 rumblings and anecdotes from colleagues shared within the providers' own respective "grapevines" or "rumor mills,"19 and personal experiences.

Providers worry about a number of distinct but often related legal problems within the EOL context. They are concerned first about potential civil malpractice lawsuits brought against them, mainly by the family members of dying or deceased residents, seeking large monetary damages. For most providers, fears mainly revolve around the hassle, emotional trauma, and injury to professional reputation associated with being sued. There is much less concern about the winning20 or losing of a case; indeed, the purchase of liability insurance in effect insulates the nursing home from the immediate financial costs of litigation.

Provider anxieties also derive from sanctions that may be imposed as the outcome of Medicaid certification and state licensure surveys (often imposed unpredictably),21 criminal prosecutions initiated by local prosecutors charging abuse and neglect of residents (and, in the case of dead residents, even homicide) because of the presence of pressure sores and/or perceived malnutrition,22 criminal prosecutions brought by the U.S. Attorney's Office and Department of Health and Human Services' Office of Inspector General (OIG) on Medicare/Medicaid program fraud and abuse theories for billing for inadequate care, and criminal prosecutions and/or professional disciplinary actions for overuse or improper use of controlled substances.

Exacerbating the legally stressful climate is the universal perception within the nursing home industry that the multiple inspectors and entities surveying nursing homes each seem to be enforcing their own particular set of standards. Given the apparent lack of coordination among enforcement agencies, and often even within any one agency, nursing home providers complain about inconsistent, unclear, and contradictory expectations foisted on them.

The bulk of providers' legal anxieties in the EOL context center on providers' widespread perception that regulators, prosecutors, nursing home staff (particularly at the nursing aide level), and families frequently fail to realistically understand and accept the sort of things that happen to individuals during the natural process of dying.23 The main provider fear is that natural developments such as loss of weight, reduced respiration, loss of consciousness, infections, and cardiac failure24 are often misinterpreted as indicia of poor EOL medical care given by the nursing home rather than as the usual, expected consequences of the dying process, and that the misinterpretation may lead to attempts to hold the nursing home legally responsible for these natural developments. As one official in the nursing home industry put it, "People deteriorate as they die, and it doesn't look pretty." Leading residents' rights advocates acknowledge:

Not all weight loss . . . indicates poor quality of care or negligence. It is not always possible to reverse the weight loss seen in residents with terminal illnesses such as metastatic cancer or those in the end stages of certain conditions including dementia, Parkinsons disease, congestive heart failure, or chronic obstructive pulmonary disease.25

A number of nursing home professionals also suggest that skin breakdown is another facet of the natural dying process that frequently occurs even when care is exemplary,26 but that claim has been met with skepticism by others;27 empirical research on this issue should be conducted.

Many nursing home providers attribute such misinterpretation of physical and mental deterioration to the tremendous pressure that contemporary regulators are put under by politicians, who are in turn pressured by resident advocacy groups and the media, to "get tough" with nursing homes. According to industry sources, the whole regulatory process has become so politicized (in a non-partisan sense) that all of the parties have become intransigent and afraid of losing both political ground and public face. Under this picture, resident advocates have so successfully convinced the media, Congress (especially the Senate Special Committee on Aging), and state legislatures that all nursing homes are inherently evil that the federal Center for Medicare and Medicaid Services (CMS) (formerly the Health Care Financing Administration, or HCFA) and state Medicaid survey agencies now compel surveyors to issue citations of deficiencies abundantly. Interviewees believed that regulators (both those who write regulations and the surveyors who enforce them) routinely operate on the presumption that nursing home care is always bad (e.g., that malnutrition listed as the cause of death on a death certificate must be proof of facility neglect, rather than the anticipated result of a conscious, informed, ethically proper decision to withhold artificial feeding from a person who probably would not have derived any benefit from the artificial feeding anyway).28 Hence, failure to cite deficiencies prolifically during a survey must represent a failure on the surveyors' part to find the evil that inescapably was present.

Many interviewees expressed concern about the risk that employees who are uncomfortable with the dying process and the physical and mental changes it entails might foment or assist with lawsuits or regulatory investigations launched against the nursing home based on charges of neglect as evidenced by malnutrition or skin breakdown. Certified nursing assistants (CNAs) particularly, even though they provide the lion's share of the hands-on care to dying nursing home residents, receive little education or emotional support in dealing with EOL situations.29 The feeling of insecurity about the teamwork reliability of staff was indicated with particular force by interviewees who are affiliated with nursing homes that rely heavily on agency or pool nursing and CNA personnel, since such personnel are likely to be very unfamiliar with the nursing home, its policies and procedures, and its residents and their families.

Providers' legal anxieties about EOL situations manifest themselves behaviorally in several ways. One notable negative behavioral manifestation is the tendency, especially in the absence of a clear, written Do Not Resuscitate (DNR) order displayed prominently in the resident's chart (i.e., when the resident is in "full code" status), to inappropriately transfer30 dying residents to acute care hospitals when it appears (usually to a nurse who is relaying information to a physician by telephone) that the resident's survival is imminently in jeopardy. It takes "a lot of guts and hassle" for a physician who is not physically present in the nursing home to "buck the nurse" who is suggesting a resident's immediate transfer to the hospital;31 this is especially true when the nursing home is a teaching facility and the physician involved is in trainee status. When a resident without clear treatment limitation orders in the medical chart "goes sour" (even expectedly) and his or her physician cannot be readily contacted, nursing homes routinely transfer the resident to the hospital "to cover ourselves."

The quality of EOL care provided in hospitals frequently leaves much to be desired from a humane perspective.32 Interviewees for this project blamed the virtual guarantee of overly aggressive treatment in the hospital on a combination of the inherent institutional culture there and the fact that clear information about the resident's and/or family's wishes about EOL care (let alone an existing advance medical directive) usually do not get transferred to the hospital along with the resident in a timely fashion. Moreover, transfer to a hospital may often conflict with the residents preference for site of EOL care.33 Nonetheless, many interviewees expressed the belief that it is in their (i.e., long term care providers') own legal best interests for resident deaths to occur somewhere other than in the nursing home. The prevalent attitude is that government surveyors, erroneously but invariably, will take the stance, "Sending the person with pneumonia to the hospital is good care, but letting the person die in the nursing home must mean bad care." A popular motto among nursing home providers, particularly those who have ever been (or felt) subjected personally to regulatory scrutiny regarding EOL care is, "When in doubt, ship them out. Make the patient the other guy's worry." Economic incentives often point in the same direction, working in synergy with providers' risk management concerns to increase the resident's chance of inappropriate hospitalization as death approaches.34

The widespread notion that courts routinely interfere with EOE decisionmaking and always in the direction of ordering or approving aggressive life-sustaining medical treatment (ESMT), coupled with broad fear of regulatory sanctions for providing too little aggressive ESMT but never for trying too hard to cure dying residents, often contributes to inappropriately aggressive resuscitation attempts and excessive use-both initially and on a continuing basis-of feeding tubes in the nursing home.35 Action, or "doing something," is equated with good defensive medicine, even (maybe especially) in EOL situations when it is destined to be non-beneficial.

As a practical matter, even when the physician recommends against pursuing aggressive technological ESMT for a dying patient, the physician's fear of the family as a potential legal trouble maker36 (either directly as the plaintiff in a civil malpractice action or indirectly as a spur to government investigation) means that the family's (or any particular family member's, particularly an adult child's) demand for aggressive ESMT virtually always controls the situation regardless of how inappropriate that demand may be. "Dead patients don't sue, but live families do," "Doing what the family demands is the path of least legal resistance," and "Do what the family wants and wait for nature to solve the problem" are veritable mantras among attending physicians, medical directors, and other nursing home personnel. This conventional wisdom is predicated on the presumption that angry consultation with an attorney is the inevitable next step after family dissatisfaction. The perception that the family is always looking over the providers' shoulders is exacerbated by the knowledge that adult children often are irrational because they feel guilty and conflicted about the parent being in a nursing home in the first place, and these emotions are compounded when the parent is in the midst of dying. Several medical directors interviewed spoke about inappropriately placing feeding tubes in dying residents in order to "feed the family," so that the family would be able to say later, "We did everything we could, but Mom died anyway so it must be God's will." In some circumstances, a proxy decisionmaker refuses to make treatment decisions one way or the other; in such circumstances, it is almost universally viewed by nursing home providers as legally safest to err on the side of inflicting aggressive LSMT on the dying resident.

On the other side of the coin, reports persist about inadequate pain control and other palliative care (that is, care focused on relieving physical and psychological suffering and consequently improving the patient's quality of remaining life) shortcomings for dying nursing home residents because providers are apprehensive that they will experience legal trouble for treating pain too aggressively. Exactly half of the non-physician nursing home staff responding to the Florida Health Care Association's 2000 End of Life Care Survey indicated a view that physicians fear over-prescribing pain medications "always" or "often," and an additional 35% responded "sometimes" to this query37 A number of interviewees for this project volunteered that, because of the general overwhelming regulatory presence, physician anxiety about prescribing pain medications is more heightened in the nursing home context than in the hospital. Besides fear of criminal prosecution38 and licensure punishment for abuse of controlled substances, nursing home physicians worry that the lowered respiration rate that accompanies adequate sedation of a dying resident in pain will be misinterpreted, and objected to, by many families as "killing" the resident. At the same time, some physician interviewees noted that legally inspired poor care sometimes takes the form of anxious nurses' unwillingness to carry out physicians' orders for proper sedation.

Another negative repercussion of the pervasive environment of legal anxiety in the nursing home industry occurs in the form of discouraging workers from entering or remaining in the nursing home field. Avoidance of, or premature departure from, nursing home work as a career choice occurs at all levels from administration (with the number of persons sitting for the administrator licensing examination decreasing 25% from 1999 to 2000 and the administrators' trade association and Federation of Administrator Licensing Boards expressing serious concern)39 to nursing and especially CNA positions.40 One medical director interviewed for this project lamented that on several occasions he had personally observed nurses and CNAs who "quit their job and the whole field on the spot" after suffering "surveyor abuse." More than one interviewee said, in so many words, "You either learn to live with the legal pressures in this business or you get out, and more and more are getting out." A shortage of qualified nursing home staff can only have undesirable consequences for the quality of care generally, and EOL care particularly.

It is important to observe that providers' legal anxieties may also influence their behavior in positive directions. Most significantly, nursing homes often recommend and arrange for hospice services for certain of their dying residents41 at least partly because they believe such action serves a useful risk management purpose for the facility. The common thread of hospice services, regardless of delivery site, is guidance by a philosophy emphasizing pain and symptom control and the psychological needs of patients and their families, rather than the cure of disease. However, one nursing home medical director interviewed for this project opined that "risk management is the only reason," other than "to give our nurses a break," to involve a hospice organization in the care of a dying nursing home resident. The equation of hospice and positive defensive practice is based on the prevalent belief that the excellent skills honed by hospice programs in positive patient and family relations, especially in the realm of educating and counseling families (as well as regulators) to accept the realities of the dying process and the changes that the dying person will experience and exhibit during that process, serve to eliminate the likelihood of malpractice actions or regulatory sanctions being pursued when hospice has been involved. Many interviewees spoke about the "special aura" that hospice has with families and regulators that assists families and regulators to accept the inevitability of a resident's death and-more significantly-the dying process, in a sense that often fails to happen when hospice has not been involved. When integrated into the nursing home care processes, hospice care is associated with less hospitalization for Medicare hospice patients.42 Indeed, a popular (and only partially facetious) saying among many nursing home providers is that "Hospice is the only way to die legally in a nursing home."

At the same time, nursing homes are sometimes reluctant to involve hospice in caring for dying patients when they should-and hospices are reluctant to become involved-because they fear potential economic or even criminal sanctions will be imposed on them and their residents for seeking Medicare reimbursement43 in inappropriate circumstances (i.e., for patients who live "too long").44 The U.S. General Accounting Office has found, "Industry and patient advocacy groups contend that recent federal scrutiny of provider compliance with program eligibility requirements has inappropriately limited access to hospice for certain beneficiaries."45 As noted by the former HCFA Administrator, "I am concerned that some individuals who want and could benefit from hospice care may not be receiving it or may be receiving it late in the course of their illness because the difficulty in making end-of-life prognoses may affect their access to hospice care. There is also a disturbing misperception that hospices and beneficiaries will be penalized if a patient lives longer than six months."46 The origins of that misperception and the degree to which it diverges from reality are dealt with in the next section.

The Basis for Nursing Home Providers' Legal Apprehensions

A certain amount of generalized fear and loathing of anything connected to the law, lawyers, or the legal process is innate among all health care providers, especially in the EOL context.47 Nursing home providers' anxieties about negative legal repercussions associated with EOL care are often exaggerated or misplaced.48 Also, these anxieties sometimes are used-consciously or not-as a pretext to justify conduct that is really driven mainly by non-legal factors. For instance, several physician interviewees admitted that their tendency to "go along" with families' demands for unrealistic, inappropriately aggressive LSMT for a dying nursing home resident frequently has as much to do with the fact that educating and convincing the family about proper EOL care takes an inordinate amount of the physician's time and energy as with any sincere concerns about potential legal entanglements.

However, the legal defensiveness phenomenon probably is considerably less overblown or reliant on mythology in the EOL nursing home context than it is elsewhere within the health care system.49 The current legal environment surrounding nursing home operations in the U.S. creates, in a number of respects, at least a partially rational basis for many of the EOL-related legal apprehensions that influence the thinking and behavior of participants in nursing home EOL care.

Liability insurance rates for nursing homes have increased markedly in the last several years. In Ohio, for instance, premiums rose 30% from 2000 to 2001 for some facilities,50 while in Florida the increase was several-fold that amount.51 In one non-profit, sectarian Florida nursing home with no survey deficiencies or lawsuits for the previous year, the renewal price of liability insurance went in 2001 from $80,000 to $720,000 for less than half the coverage.52 Some insurers have discontinued underwriting nursing home liability policies in some geographic areas altogether, on the theory, "You can't responsibly underwrite when you can't predict your risk of loss."53 These developments have strong financial and symbolic importance for providers. Insurance developments clearly reflect, and are a logical response to, the changing civil liability climate confronting the contemporary U.S. nursing home industry.

Until a relatively short time ago, private civil lawsuits brought by or on behalf of individual residents against specific nursing homes and/or their staff members claiming professional malpractice were rare enough not to be a large source of anxiety for nursing homes.54 For a variety of reasons, including the enactment of legislation in several states that "literally invited lawyers" to file personal injury claims against nursing homes,55 this relatively tranquil situation has changed drastically. As the plaintiffs' personal injury bar has discovered this potentially lucrative field56 and linked arms with nursing home residents' advocates, consumer groups, and regulators, the number of civil malpractice actions being filed against nursing homes has risen exponentially. A brochure for an attorneys' educational program happily announced, "There is a torrent of new activity surrounding nursing home litigation in the United States. Claims against nursing homes and assisted living facilities have increased 9 percent each year over the last five years with charges of improper nutrition, medication errors, emotional abuse, and more."57

So, too, has there been an escalation in the number of qui tam (or whistleblower) lawsuits58 filed against nursing homes by private citizens unrelated to any resident, seeking monetary damages on behalf of the government under the federal False Claims Act59 for negligent care paid for by the government through Medicare, Medicaid, the Veterans Health Affairs long term care program, or otherwise. An increasing number of malpractice and qui tarn actions have resulted in substantial financial settlements60 or judgments against provider defendants, often including awards of punitive or exemplary damages and/or large compensatory damages for the resident's pain and suffering.61 In the five years preceding 2000, the average dollar amount of malpractice claims brought against nursing homes rose from $64,015 to $112,351.62

The number of lawsuits and the number and size of settlements and judgments actually stemming particularly from complaints about the quality of EOL care are not known, since liability insurance carriers do not compile their claims statistics in a manner that would permit that information to be abstracted with any degree of precision. Instead, insurers track claims against their insured facilities according to more generic categories. A substantial percentage of claims fall within the categories of resident pressure ulcers63 or malnutrition. One experienced claims reviewer opined in an interview that probably few of these cases come out of situations where there was a conscious, acknowledged decision to abate certain kinds of LSMT, such as artificial feeding, since instead malpractice suits ordinarily entail allegations of understaffing, inattention, and sloppiness in care for profit reasons; however, this interviewee conceded that there is no present way to verify his impression on this point.64 This important data void about EOL related claims notwithstanding, insurers are concerned enough about legal risks arising in the EOL context that, as part of the insurer's overall assessment of a nursing homes risk exposure, it reviews all of the facility's relevant policies, procedures, and documentation practices for compliance with applicable laws; if a deficiency or possible future problem is found, the insurer works with the facility, either on a one-time basis or in a continuing collaboration, to correct the situation.65

Nursing home providers' discomfort about regulatory sanctions being imposed as part of the required licensure and Medicaid survey and certification processes is longstanding. However, the extensive, omnipresent federal and state legislative and regulatory environment that envelops nursing home practice66 has lately, and appears increasingly likely in the future to, become even more aggressive67 and focused on punitive enforcement.68 Predicts one set of commentators, "Satisfying the regulators and caring for sicker, less stable patients should make nursing home management even more challenging."69

Additionally, nursing homes are now confronted with the realistic possibility of being targeted in criminal prosecutions for providing suboptimal levels of quality of care. Criminal indictments may be sought by local prosecutors under the authority of state elder abuse and neglect statutes.70 Resident advocates have particularly lobbied law enforcement officials to use discovery of resident malnutrition-an inevitable development for dying persons incapable of eating by mouth for whom a decision has been made to withhold artificial feeding and hydration-as a key trigger for the imposition of civil and criminal penalties for resident abuse and neglect.71 Advocates maintain that they oppose the imposition of such legal penalties in cases where malnutrition occurs because of an informed, autonomous choice to refuse artificial nutrition and hydration by the resident or resident's proxy decision maker,72 but it is uncertain whether surveyors and prosecutors grasp the intended distinction.

Criminal prosecutions also may be pursued by federal U.S. Attorneys' Offices (which are part of the Department of Justice), in collaboration with the Department of Health and Human Services' OIG, based on the theory that a nursing home that bills the Medicare or Medicaid programs for payments when the care provided was inadequate has attempted to defraud the government and hence violated the False Claims Act.73 Remedies for violation of the False Claims Act include treble damages.74 The OIG devotes an increasingly substantial amount of attention under its Operation Restore Trust initiative to assessing the quality of care in nursing homes, a development that adds to the sense of besiegement from without felt by the nursing home industry75 especially when combined with the former U.S. Attorney Generals vehement public endorsement of the use of fraud and abuse prosecutions to punish nursing homes for "inadequate care."76

Prosecutors' activities have influenced provider perceptions, and hence their actions, in other ways. In the pain management sphere, for example, murder charges brought against nurses for administering narcotics to one dying patient in Maryland77 convinced the involved nursing home to never again give morphine to any resident,78 and a ripple effect among other facilities as a result of the accompanying publicity no doubt took place. In its Operation Restore Trust initiative in the late 1990s, the OIG focused on hospice providers with longer lengths of stay, higher rates of noncancer diagnoses, and large numbers of nursing home enrollees.79 Investigators cited numerous examples of abuse within the hospice nursing home system and at one point recommended eliminating the nursing home hospice Medicare benefit.80 A leading geriatrician has observed that "the word got out" and many physicians got frightened into a practice of waiting to order hospice intervention until the last minute for nursing home residents.81 According to one hospice director:

We all agree that eliminating fraud and abuse is critically important to preserving and protecting the Medicare Trust Fund. It is becoming increasingly clear, however, that antifraud efforts, which have focused attention on the very small percentage of patients who have outlived their six-month prognosis, have created an environment of fear among referring physicians and hospices that has limited access to hospice care. The impact on families and patients who are appropriate for hospice care, but never receive it because of the government's approach, is devastating.82

Recommendations

A number of recommendations for changes in public policy and nursing home practice could be distilled from the interviews conducted for this project and a review of the extant literature. This section sets forth these recommendations for consideration by those who are in positions to help effectuate them.

Current federal83 Medicare/Medicaid law, embodied in the Nursing Home Quality Reform Act that was enacted as part of the 1987 Omnibus Budget Reconciliation Act (OBRA), requires nursing homes to focus extensively on their obligation "to attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident."84 Regulations promulgated to implement that legislation require the use of a comprehensive, uniform assessment system (the Resident Assessment Instrument [RAI] consisting of the Minimum Data Set [MDS] and in-depth Resident Assessment Protocols [RAPs]) for all nursing home residents focused on "identifying treatable, reversible causes of functional limitations and on restoring and maintaining function."85 There was virtually unanimous support among interviewees for this project and in the literature for the proposition that the regulatory emphasis on resident function is inappropriate, and indeed frequently harmful, in the case of dying individuals.86

While the prevailing regulatory emphasis "has promoted improved care for reversible or preventable conditions, it does not include quality standards specific to the needs of residents suffering or actively dying from progressive incurable illness."87 The position that health related quality of life is defined by preserving or enhancing function does not make sense for the dying person.88 Instead of a misplaced emphasis on function, in the case of dying nursing home residents the regulations and their enforcers ought to judge nursing homes according to how well they humanely manage and palliate symptoms of resident suffering during the dying process.89

As described by one commentator:

There is a tension in nursing homes between the medical model and the palliative-care model at the end of life. Survival is often not the most important goal. Emphasis on the emotional, spiritual, social, and functional well-being of the resident at the end of life can help to integrate a psychosocial model within a facility that has strong medical resources. This combines concern with pain and a range of physical symptoms with concern for broader aspects of quality of life.90

A radical change in regulatory emphasis from the medical to the psychosocial model for dying persons would permit a reconceptualization of nursing home EOL care that should include integration of a hospice-like approach to the care of dying residents.91 This may be accomplished both by improving cooperation and collaboration between nursing homes and hospice organizations and by educating nursing home staff about how to provide hospice-like care themselves. Fear of Medicare fraud and abuse investigation as a barrier to timely involvement of hospice organizations in the care of dying nursing home residents92 has been discussed earlier. This barrier has been particularly powerful in discouraging physicians from ordering hospice care for residents with dementia and other noncancer diagnoses,93 even though many individuals in that category could have the quality of their final days enhanced significantly by timely hospice intervention.94 HCFA began to address this barrier by sending a letter from its Administrator to all Medicare certified hospices in September, 2000 stating:

I am concerned that some individuals who want and could benefit from hospice care may not be receiving it or may be receiving it late in the course of their illness because the difficulty in making end-of-life prognoses may affect their access to hospice care. There is also a disturbing misperception that hospices and beneficiaries will be penalized if a patient lives longer than six months. Nothing could be further from the truth. There have been a handful of cases in which beneficiaries who were not carefully diagnosed in the first place were inappropriately enrolled in hospice. Nevertheless, that is very different from situations in which a terminally ill patient has had the good fortune to live longer than predicted by a well-intentioned physician.95

The nursing home industry must move away from its traditional mode of reacting to (and complaining about) standards established by government regulators and/or private accreditation agencies toward a more proactive posture in setting and implementing appropriate standards of care for dying residents. Industry-developed standards should emphasize hospice principles, stressing palliation as the chief goal of EOL care. An excellent example of such forward-looking activity by the nursing home industry in this regard has been provided by the work of the California Coalition for Compassionate Care.96

Nursing home staff at all levels who have contact with dying residents must be thoroughly and regularly educated about delivering proper EOL care,97 and about hospice principles and skills specifically. Excellent opportunities and processes for continual, interaction among all members of the care team (e.g., nurses, CNAs,98 physicians) need to be in place so that everyone is "on the same page" in terms of goals and methods of care for dying patients. Such closer cooperation should reduce the risk of misunderstanding and confusion that can otherwise disrupt clear communication with a resident's family.99 That type of disruption occurs today when a family receives different signals from different members of the care team, and the resultant family upset may form the basis for legitimate legal anxieties on the provider's part.

When interviewees for this project were asked about the sorts of incentives that would encourage the nursing home industry to proactively develop, disseminate, and implement EOL standards incorporating hospice care principles, the overwhelming response was "a reduction in our insurance rates." As noted earlier, liability insurance premiums exert a tremendous influence on provider perceptions and conduct, both because of the actual dollars involved and the symbolic importance attached to them. The nursing home and insurance industries should attempt to work better together, along with the government agencies that regulate those respective industries in each state, to achieve reductions (or at least a deceleration in the rate of increases) of liability insurance premium amounts, based on the risk management value of incorporating hospice principles into the care of dying nursing home residents. To the extent that such cooperation could be accomplished, there would be a positive incentive for more humane EOL care.

Bringing about a shift in primary regulatory emphasis for the care of dying residents from function to palliation will require a sustained educational effort regarding all aspects of the dying process aimed at nursing home regulators and surveyors. That effort must include education about the forms of physical and mental decline that may naturally and ordinarily still be anticipated in EOL situations in which fine palliative care is being rendered. For example, one of the main goals of one Robert Wood Johnson Foundation Community-State Partnership grantee is "to improve understanding about end-of-life care between nursing home regulators and [nursing home] administrators."100 Surveyors must be trained to evaluate EOL quality of care in terms of good palliative care principles, and the nursing home industry must be prepared to assist in that training.

Nursing home providers must be willing to do a more complete, conscientious job of documenting the details of EOL care for each dying resident. Many interviewees suggested that, when surveyors issue citations for deficiencies associated with EOL situations, not infrequently the problem can be traced to a failure by nursing home staff to document fully and accurately, and thus a failure to explain and justify to the surveyor, that the resident situation observed derives from appropriate decisions about the care plan rather than from neglect of the resident's needs. There must be an educational element to the documentation improvement component of any improved care/risk management effort. For instance, the American Association of Homes and Services for the Aging (AAHSA) has begun to educate medical directors regarding the completion of death certificates; this effort involves, for example, teaching medical directors that a resident who dies from cancer while a feeding tube is being withheld should not have the cause of death listed as malnutrition. One experienced medical director suggested that physician education about documentation concentrate on what plaintiffs' attorneys and expert witnesses look for when they review the medical record of a deceased former resident, and that such education will be most useful in meaningfully changing physician practice if it is conducted "one on one, like drug detailing."

Regarding their anxieties concerning potential civil malpractice actions emanating from proper but misinterpreted EOL care, providers interviewed indicated that they would feel more at ease and thus more willing to provide palliative care rather than aggressive LSMT if families were educated to understand and accept what happens to dying persons as natural and expected developments during the dying process. For example (although it was noted earlier that this particular example lacks universal acceptance), "The families of very debilitated older persons should be informed at the time of admission, or at a care conference, that the risk for the development of pressure ulcers is high [despite high quality care]."101

A number of interviewees suggested that state legislative clarification of the status of advance medical directives, Do Not Resuscitate orders, and proxy decisionmaking authority on behalf of decisionally incapacitated residents would likely alleviate much legal apprehension on the part of nursing home providers and make them feel more secure in effectuating the care preferences of residents and/or families. There was particular support for amending existing state statutes to indicate unambiguously that a resident's or proxy's decision to forego aggressive LSMTs such as CPR, feeding tubes, and ventilators does not in any way impede the delivery of palliative care to the resident. Some interviewees in Ohio102 and Hawaii103 praised their states' respective statutes for instilling a level of confidence in both providers and residents/family members allowing them to deviate when appropriate from the full-scale medical intervention approach. All interviewees conceded that, even when a jurisdiction's legislation makes reasonably clear the rights and responsibilities of the respective parties in the EOL context, it "only helps when it is used," and vexing barriers to effective advance medical planning-including poor communication among providers, resident, and the family-persist. Thus, any legislative refinements would need to be accompanied by vigorous efforts to educate nursing home providers and the public about advance medical planning, and to encourage individuals to avail themselves of planning opportunities in a timely manner.

Another recommendation for legislative action would entail states amending their codes to clarify that implementing medical decisions to withhold or withdraw LSMT from a dying person, regardless of the specific care setting, does not constitute resident abuse or neglect and is not the basis for criminal prosecution. Minnesota Statutes 626.5572, Subd. 2 (e) could serve as a model:

[A] vulnerable adult [defined elsewhere to include persons over 18 years old and residing in a facility] is not abused for the sole reason that the vulnerable adult or a person with authority to make health care decisions for the vulnerable adult. . . refuses consent or withdraws consent, consistent with that authority and within the boundary of reasonable medical practice, to any therapeutic conduct, including any care, service, or procedure to diagnose, maintain, or treat the physical or mental condition of the vulnerable adult or, where permitted under law, to provide nutrition and hydration parenterally or through intubation.

Substantial progress has been made during the past decade in removing or mitigating some of the worst legal barriers to the effective administration of pain medication, as many states have amended their statutes to reduce the risk of prosecution or professional license sanctions for proper prescription.104 Various states have issued opinions and guidelines105 intended to alleviate undue legal anxieties and deter EOL care that is less than effective. The federal Drug Enforcement Agency (DEA) in 2001 joined with twenty-one health organizations to issue a consensus statement asserting that "Preventing drug abuse is an important societal goal, but . . . it should not hinder patients' ability to receive the care they need and deserve."106 Nonetheless, while legislative and regulatory activity in this sphere has made significant strides in educating and influencing the leadership of the health professions in a positive direction, a fairly high degree of legal apprehension persists at the rank and file level and interferes with optimal pain management. Hence, continued attention to alleviating legal barriers-both in reality and perception-to effective pain management for dying nursing home residents ought to remain on the agendas of a number of state legislatures and Attorney Generals for the foreseeable future.107

A final recommendation with both policy and practice implications concerns expanded use of Advanced Practice Nurses in nursing homes.108 According to several interviewees, the presence of Advanced Practice Nurses in a facility is likely to improve the quality of EOE resident care and at the same time contribute to effective risk management for the nursing home. For example, the medical director or attending physician may feel more confident in refraining from transferring a dying resident to a hospital when the physician has confidence in the Advanced Practice Nurse with whom the physician is speaking by telephone in the middle of the night.109 That level of confidence, which usually is not present when the physician is dealing with other facility staff, is based both on the Advanced Practice Nurse's special training and professional credentials110 and the fact that Advanced Practice Nurses are likely to know the residents and families well because of the extended time they spend in the same facility. The Advanced Practice Nurse is also probably more skilled than other personnel in communicating with families and counseling them about realistic EOL expectations. The chief impediment to broader use of Advance Practice Nurses in nursing homes is a limit to available funding for that position; the public policy challenge is to enhance funding mechanisms, with the expectation that resources expended for Advance Practice Nurses could be recouped by a reduction in the number of inappropriate transfers of resident to hospitals.

Conclusion

The quality of EOL medical care in America's nursing homes can and should be improved. Anxieties that nursing home providers harbor about potential legal dangers to themselves associated with the care of dying patients are, partially but only partially, exaggerated and based on misperception of the actual legal climate. Whether well-founded or not in any particular situation, those anxieties can exert a substantial, and sometimes negative, impact on the care available to nursing home residents during their final days. This article has outlined a variety of actions for policymakers, the nursing home industry, and individual providers to consider in developing and implementing a strategy to surmount the barriers to good EOL care posed by providers' fears of legal repercussions. The challenge is complex, and effective solutions will require the concerted, collaborative efforts of all of the concerned actors.