Making Room for Dying: End of Life Care in Nursing Homes
Johnson, Sandra H., The Hastings Center Report
People are dying in nursing homes. This may sound like a clarion call for a new wave of nursing home policing; instead it is a statement of a simple fact that we must embrace. Over 20 percent of older Americans meet their deaths in a nursing home, and 30 percent of all persons dying in hospitals have been transferred there from nursing homes just a few days earlier.
Understanding that people die in nursing homes--and should die in nursing homes, just as they should be able to die at home--ought to drive us to improve their care. The literature is already rich with case studies and demonstration projects undertaken by nursing homes to improve care of the dying. Broader change requires a shift in culture and a reframing of the issues. Contemporary standards for nursing home quality and the accepted framework for end of life decision-making have inadvertently placed obstacles in the path of good care for the significant proportion of older people who will spend their final days in a nursing home.
Enriching the Ideal for Nursing Home Care
The cornerstone of contemporary nursing home quality standards has been the unequivocal repudiation of the related beliefs that nursing homes are way stations for the dying elderly and that decline is inevitable for nursing home residents. Instead of being resigned to inevitable decline, regulators and professionals are committed to maintaining, if not improving, the physical, mental, and social health of nursing home residents. This hard-won expectation of active support for maintenance and growth rather than mere caretaking has directed nursing homes toward a more engaged and less fatalistic care model. This change is good, in part because the nursing home industry, regulators, and caregivers have become alert to substandard care that had once hidden behind routine acceptance of physical and mental decline.
These rehabilitative, health-promoting expectations, however, may have unintentionally produced a death-denying culture within the nursing home. Regulations impose standards that assume that physical, mental, and emotional decline are signals of deficiencies in care unless demonstrated to be otherwise. Physical changes commonly associated with dying, such as weight loss, have thus become signs of failure, rather than a normal part of dying, and so trigger requirements that the facility justify its care. Because nursing home administrators are highly sensitive to regulatory risk and avoid situations that may attract the attention of regulators, the regulatory emphasis on positive indicators of health can discourage them from providing good care to a dying resident. This dynamic is revealed, for example, by the fact that imminently dying residents are often transferred to hospitals so their deaths will not occur in the nursing home and require that care be defended. Failure to accept the indicators of decline that naturally occur in dying may also be reflected in the emphasis on tube feeding for nursing home residents. Thus, the rehabilitative expectations, captured and reinforced in regulation, skew nursing home care models away from care of the dying.
Before nursing homes can improve end of life care, dying will have to find its place in the nursing home culture. For nursing homes, a shift in culture necessarily involves paying attention to regulation and to the providers' reactions to regulation as well as to other behaviors that create and maintain a culture. Culture and regulation go hand in hand in the nursing home environment because of the pervasive scope of nursing home regulation, the enforcement orientation of regulators, and the intense risk aversion of nursing home administrators. Efforts to make room for the dying patient require a review of standards and adoption of changes to facilitate the appropriate level and type of care for them. Some have argued, for example, that changes in the mandatory Resident Assessment Index could more readily encourage nursing homes to provide better palliative care. …