Ethical conflicts are common in long-term care facilities, but access to ethics resources often is lacking in these settings. “Access to ethics consultation can reassure everyone involved that the medical director, nurse, or administrator isn’t missing something,” says David N. Hoffman, JD, assistant professor of bioethics at Columbia University.
Many long-term care facilities lack access to ethics consultants, however. Hoffman and colleagues wanted to learn more about care conflict dilemmas in long-term care, and what ethics resources providers used to assist with dispute resolutions. The researchers surveyed 138 medical directors, administrators, chief medical officers, and clinical practitioners at long-term care facilities.1 Some key findings:
• Two-thirds of participants stated that they had to reject surrogate instructions because they were inconsistent with the patient’s wishes.
• Most (71%) participants reported managing a family conflict.
• Respondents reported a wide range of ethical conflicts between staff, patients, family, and surrogate decision-makers. The two most common issues involving end-of-life care were interpreting advance directives and surrogate conflicts over treatment decisions.
• Many respondents conveyed the need to clarify on care wishes in advance, to avoid issues with end-of-life care for patients with dementia.
• More than half (55%) of participants worked at facilities with an official dispute mediation policy for cases where surrogate decisions conflict with a patient’s previously expressed wishes. About one-third of those policies included an ethics consultation or an ethics committee.
• Eighty percent of respondents at facilities with an official dispute policy reported having to use it in the last few years.
• Only 10% of providers requested an ethics consult when managing patient-surrogate conflicts or disputes. More commonly, staff had a goals-of-care discussion with the family, staff, and patient (if possible) present.
• Just five respondents reported obtaining an ethics consult for help managing a conflict.
The research draws on a previous study about attitudes and practices of nursing home medical directors toward advance directives to voluntarily stop eating and drinking (VSED).2 In that study, most (79.6%) long-term care facility medical directors indicated some degree of familiarity with VSED. However, about one-quarter (23.9%) were not sure if their facility could accommodate a request for VSED. One-fifth of respondents stated that they were personally uncomfortable caring for a patient who requests VSED. Notably, most respondents reported that they personally would be “somewhat” or “very” willing, in the event of terminal illness or late-stage dementia, to consider VSED for themselves. “What was fascinating is the number of medical directors who said, ‘If I were in this kind of situation, I would want my advance directive respected’ — who would want to be without assisted oral feeding. Yet they said their institutions couldn’t do that, because of a misunderstanding of federal regulations,” observes Hoffman.
The study was inspired by Hoffman’s work with a resident of a long-term care facility in New York. The resident’s advance directive stated that when she got to a certain level of functional assessment, she wanted no artificial feeding and no assisted oral feeding. The facility refused to honor the advance directive.3 “The facility wouldn’t even discuss another interpretation of the regulations that they were worried they would run afoul of. And that’s where we are today. We have a lot of work to do,” says Hoffman.
Long-term care facilities have the same ethical obligations to patients/residents as hospitals do, “and then some extra ones,” says Hoffman.
Unlike a hospital setting when the patient is discharged, the long-term care facility “is the patient’s home. They are not going anywhere, so if they are not able to access services that they need, that would normally be given to someone if they were in a private home, that would be a problem,” says Hoffman.
An estimated 6.9 million Americans 65 years of age or older are living with Alzheimer’s disease in 2024.4 “As the baby boomer generation gets closer to the point where there are growing numbers of people suffering from Alzheimer’s and other dementias, and are more frequently ending up in facilities rather than remaining in private homes, we have a problem of those institutions — the long-term care facilities — having an enormous amount of legal power over these individuals,” says Hoffman.
Even if a patient has an advance directive stating they want VSED when they get to a certain level of functioning, long-term care providers may be over-cautious and not comply with the directive. “Long-term care facilities are treated with such suspicion that they are somewhat understandably paranoid about doing anything that could be considered allowing patient harm,” Hoffman explains. “There is so much of a risk management/risk avoidance mindset in long-term care facilities.”
To overcome this, Hoffman recommends that providers instruct patients on the importance of creating a clear, enforceable, legally binding advance directive. It is also necessary to train nurses, administrators, and directors at long-term care facilities about their obligations to respect the patient’s wishes. “We are hoping that, with the findings of this study, we can start a dialogue about respect for patient’s wishes in a way that doesn’t create risk management concerns,” says Hoffman.
Long-term care providers may not know what to say when family members insist on care that the patient explicitly said they did not want. Ethicists can help staff to understand that they have the moral authority — and, in fact, a moral obligation — to push back if family members insist on artificial feeding against the patient’s stated wishes. Hoffman says that staff could state something like, “We understand that you are upset and that doing what your loved one said we were supposed to do in this particular circ*mstance is upsetting. But this is something we are morally and legally obligated to do. It’s also medically the right thing to do.”
Attending to ethical issues in long-term care facilities has important implications for residents, their family members and friends, and staff, and for improving care experiences and outcomes, according to Candace L. Kemp, PhD, a professor at The Gerontology Institute at Georgia State University. Kemp’s research has focused on ethical issues in assisted living communities.5,6 Offering training to staff that promotes awareness and identification of ethical issues, as well as key ethical principles and factors is an important first step. “In an ideal world, care communities would have resources available — including access to a trained ethicist available to consult,” says Kemp.
Currently, Hoffman and colleagues are developing best practice guidelines for ethical issues at long-term care facilities. The goal is to increase the ethics expertise of a group of people at each facility, who can be called on to assist in ethically challenging cases. “This can be an additional responsibility beyond their normal day job because these issues don’t come up all that often. Once you’ve dealt with a particular circ*mstance or scenario once or twice, it gets a lot easier to apply what you learned the first couple of times to the next 10 times,” says Hoffman.
Hoffman also is planning to develop internships for bioethics students at long-term care facilities. Students would serve as ethics consultants on an as-needed basis, so the cost is not prohibitive. The students would become familiar with the individual facility’s operations and know what rules ought to be applied in a given situation. “They will know how to mediate disputes in a manner that’s both legally and ethically appropriate,” says Hoffman.
REFERENCES
- Hoffman DN, Strand GR. ‘Sit down and thrash it out’: Opportunities for expanding ethics consultation during conflict resolution in long-term care. New Bioeth 2024;Mar 20:1-11. doi: 10.1080/20502877.2024.2330275. [Online ahead of print].
- Hoffman DN, Strand GR, Bloom RF, Hendley K. Understanding resistance to honoring VSED advance directives in dementia patients: A cross-sectional provider survey. J Gerontol Geriatr Med 2023;2:192. doi: 10.24966/GGM-8662/100192.
- Aleccia J. Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no. The Washington Post. Published Jan. 18, 2020. https://www.washingtonpost.com/health/diagnosed-with-dementia-she-documented-her-wishes-for-the-end-then-her-retirement-home-said-no/2020/01/17/cf63eeaa-3189-11ea-9313-6cba89b1b9fb_story.html
- [No authors listed]. 2024 Alzheimer’s disease facts and figures. Alzheimers Dement 2024; Apr 30. doi: 10.1002/alz.13809. [Online ahead of print].
- Turner K, Kemp CL, Lesandrini J, et al. Bioethics in gerontology: Developing a typology of ethical issues in assisted living. J Appl Gerontol 2024;43:520-526.
- Kemp CL, Lesandrini J, Craft Morgan J, Burgess, EO. The ethics in long-term care model: Everyday ethics and the unseen moral landscape of assisted living. J Appl Gerontol 2022;41:1143-1152.
