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Three Little Words: Long-Term Care Ethics
I recently heard an expert in health communications talk about certain issues that are especially hard to get policymakers, the media, or the public to focus on. Above all, he said, try not to use the words “long-term care” if you want someone to pay attention to what you’re saying – there’s something about those three words that makes people tune out.
Chaplains who work in long-term care are familiar with this phenomenon. It can be difficult to hold someone’s attention after you mention that you work in a nursing home, or a rehabilitation hospital (unless you can tell a triumphant story of recovery), or a residential facility for persons with disabilities. Perhaps this is because human beings prefer to avoid thinking about the circumstances that might land them in long-term care. Perhaps it’s because Americans prefer to avoid thinking about how to provide for the long-term care of some of society’s most vulnerable members. Or perhaps it’s because what happens in long-term care isn’t as visible, or as potentially dramatic, as in an acute care hospital. The phenomenon can even apply to clinical ethics, in which “health care” usually means “hospital,” although nursing homes and residential facilities also provide health care.
While long-term care facilities deliver a narrower range of services than acute care hospitals, this doesn’t mean they lack ethical complexity. Here are some of the potentially complicating factors in the “doing” of ethics in long-term care:
• long-term care is highly regulated, due to the vulnerability of those who depend on it and the rules that pertain to reimbursement for different conditions requiring long-term care. Options for resolving an ethical dilemma may be constrained by the need to comply with multiple sets of regulations, some of which may not have anticipated the situation at hand.
• Authority may be distributed differently in long-term care. Staff turnover may be especially high in these facilities, making it difficult to maintain a common understanding of ethical principles and their practical applications.
• It may not be clear whether persons in need of long-term care are “patients” or “residents,” or how much medical care can be provided safely outside of an acute care setting.
• Families may be involved in treatment decisions over months and years, rather than days or weeks. Surrogates for persons without decision-making capacity may not be closely involved in a person’s day to day life, and their beliefs concerning a person’s quality of life may differ from those of staff who observe the same person daily.
Chaplains who work in long-term care, like their colleagues in acute care hospitals, may encounter ethical issues through serving on an ethics committee – or when they are drafted to organize an ethics committee or revive a dormant one. They may observe some of the same problems as their acute care peers: an ethics committee that functions as a crisis committee, grievance committee, disciplinary committee, or committee of last resort, but lacks a clear mandate for what a well-functioning ethics committee does best: ongoing ethics education; robust discussion of issues with an ethical component, with the goal of developing sound, clear policies; and consultation at the bedside, particularly for persons without family or other surrogates.
Certain challenges may be more common in, even characteristic of, long-term care settings. The gradual migration of treatments and technologies from acute care to long-term care raises questions about where organizations should invest limited resources, and about the expectation that certain treatments and technologies can or should be offered routinely in long-term care if their safety and effectiveness is not clearly established. Because long-term care facilities other than rehabilitation hospitals may have few – or no – full-time staff physicians, the process for treatment decision-making can be unclear. (Even ensuring that physicians are represented on the ethics committee can be difficult, as consulting physicians may not be available for meetings.) Determining how to honor patient/resident self-determination when decision-making capacity is absent or uncertain is another challenge characteristic of doing ethics in long-term care.
This column was suggested by chaplains who work in long-term care and had, as yet, heard or read little about how they and their profession could make a constructive contribution to ethics in their organizations. This overview can get that important conversation started. As this is an interactive column, I invite chaplains working a variety of long-term care settings to write and tell us about their experiences (good and bad) in thinking about and doing ethics in long-term care.
Nancy Berlinger is Deputy Director and Research Associate at The Hastings Center. Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; conscientious objection and moral distress in health care; and patient safety and the resolution of medical harm. Her broader interests include bioethics issues in cancer care, narrative ethics, and medical humanities.
As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation.
Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness
(Johns Hopkins, 2005), which will be released in paperback in fall 2007. She serves on the ethics research group of the Joint Commission, the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM), the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, and the editorial board of Medical Ethics Advisor
. She is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.
She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.
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