Trends in End-of-Life Care in Nursing Homes
Increasing numbers of Americans spend their last days in long term care, with a rise expected from 25% in 1998 to 40% by 2020.1 For those with dementia, 70% die in a nursing home.2 In addition to the sheer numbers of older Americans dying in nursing homes, the clinical complexity of their care is increasing. As hospital stays have become shorter, the burden of completing a course of acute care has shifted to the nursing home. AMDA survey as well as CMS data has confirmed these trends recognized by practicing long-term care physicians.3
The shift toward greater acuity in nursing home care occurs in a population already characterized by multiple comorbidities, reduced function, and frailty. This creates a milieu in which increased pace of decline is a likely occurrence, despite the best of care. When clinical decline occurs in such a setting, ethical concerns may arise as to whether care goals should be modified in the face of possible impending death.
Research on end-of-life care in nursing homes is limited. A review of available studies suggests that the care is often inadequate, with poorly controlled pain, low rate of referral to hospice care, excessive hospitalization near the end of life, inadequate use of advance care planning, and family dissatisfaction.1
One obstacle to adequate end-of-life care in nursing homes may be the culture created by excessive regulatory scrutiny. Weight loss and functional decline are approached as definite indicators of poor quality of care rather than possible harbingers of an inevitable and imminent dying process. In a pay-for-performance reimbursement system linked to these measures, the recognition and proper management of imminent dying may be delayed or overlooked altogether. Another obstacle to adequate care near the end of life may be the tendency to hospitalize some dying patients out of fear of blame or litigation. These and other underlying assumptions of nursing home practice must be examined and modified to enhance the possibilities for improved end-of-life care in nursing homes.4
Ethics Committees in Nursing Homes
A facility ethics committee offers a venue in which end-of-life care and its dilemmas can be discussed. However, the development of ethics committees in long-term care facilities has lagged behind that of hospitals. Between 1983 and 1985, the prevalence of hospital ethics committees rose from 26% to 60%.5 In contrast, a national survey of nursing homes in 1988 found that only 2% of the sample of 1278 responding facilities had ethics committees.6 Those facilities with committees tended to have more beds and a religious affiliation. A report from the year before found 10% of Minnesota facilities had ethics committees, most commonly in religiously affiliated homes in urban areas with higher percentages of skilled beds.7 In 2004, a survey of one metropolitan county in the southwestern US found 29% of nursing homes had ethics committees.8
Attitudinal barriers to forming an ethics committee were explored in the 1988 survey. These included widespread belief that ethical issues could be resolved without a committee. Many perceived a committee as undesirable bureaucracy not sufficiently close to the clinical situation.
Conversely, in the 2004 survey, 67% of the facilities without a committee expressed reasons for interest in developing a committee. These included the need for expert guidance in ethical dilemmas, the need for resolving clinical problems in which issues with the family had developed, and a need to determine best practices in the facility.
Smaller facilities may not have the personnel or the volume of cases to maintain an ethics committee. In New Jersey, a statewide initiative was launched to provide a network of regional long-term care ethics committees, offering education and consultation to facilities. Only 27% of the participating facilities had their own in-house committees.9 Other options for smaller facilities may include collaboration with other nursing homes or local hospital ethics committees.
The purpose of this paper is to explore the rationale for developing a facility ethics committee within the context of previously stated AMDA positions and resolutions, the purposes of such a committee, and recommendations for committee structure and function, as it relates to the process of end-of-life decision making within the facility.