Unique Ethical Dilemmas Occur in Long-Term Care Settings: Staff Need Ethics Resources

By Stacey Kusterbeck

Hospitals are not the only care settings where dilemmas occur. Ethical issues also occur at various long-term care settings, such as assisted living facilities, nursing homes, and home or community-based programs.

There are ethical concerns surrounding business models of current long-term services and supports (LTSS). Business models in long-term care, especially for the care of vulnerable persons, must incentivize and promote the ethical and evidence-based use of resources to optimize care quality, patient/resident safety and quality of life, and hold vulnerable persons’ interests as paramount, according to a recent position paper from the Ethics, Professionalism and Human Rights Committee of the American College of Physicians.¹ “The position paper was developed in response to concerns from our members about the ethical challenges of the changing environment in long-term services,” says Jason M. Goldman, MD, MACP, president of the American College of Physicians.

The paper reflects longstanding concerns about the corporatization of healthcare and the ethical implications of physician employment and healthcare business practices.² Physicians and entities that provide LTSS should meet these conditions, the paper asserts:

• Services, policies, and business practices should “incentivize and promote the ethical, evidence-based use of resources and optimize care quality, care plans, patient preferences, and decision-making, together with the safety of persons across the lifespan, including older adults, residing in various settings in the community.”
• LTSS professionals and facilities must respect the dignity and uniqueness of each individual patient.
• Policymakers and LTSS must prioritize efforts to improve health equity by addressing ageism, access to care, and disparities caused by income, race, or ethnicity.
• Transparency and accountability in LTSS must be increased. Patients and families should be able to evaluate quality with easy-to-understand quality metrics to compare the facility to others.

“Physicians should use their voices individually and collectively to put the patient first and to draw attention to practices or institutional policies that conflict with their professional commitments, and seek change within their institutions,” says Goldman. For example, physicians should strive to ensure that decisions about long-term services routinely take into account patients’ unique needs and preferences. Physicians also should identify the caregiving skills, services, and other resources necessary to provide the support their patients need.

“Ethicists should familiarize themselves with the particular challenges facing local institutions and forge collaborative relationships among those providing care to support patient needs in keeping with ethical standards,” asserts Goldman.

Unique ethical challenges occur at post-acute care hospitals, which provide rehabilitation and recovery after a hospital stay. “Several years ago, a local pediatric post-acute care (PPAC) facility reached out for help in rebooting their ethics committee,” reports Erica K. Salter, PhD, HEC-C, chair of the Department of Health Care Ethics at Saint Louis University and co-chair of the Ethics Committee at SSM Health Cardinal Glennon Children’s Hospital. Salter and colleagues conducted a study to better understand the nature of ethics issues encountered in the PPAC setting, noting that most literature on clinical ethics issues focuses on acute care settings. “Given the substantial differences between acute care and post-acute care contexts (such as patient population, length of stay, and admissions and discharge contexts), we hypothesized that if we asked PPAC employees what types of issues they encountered most frequently, we might uncover some differences,” says Salter.

The researchers surveyed 104 PPAC healthcare providers about ethical challenges they faced.³ Discharge disposition, communication issues (either among the clinical team or between clinicians and parents), behavior problems, and goals of care were the top ethical issues reported.

Lack of caregiver support was another frequent unique ethical concern. Some providers cited cases in which parents or caregivers could not provide a safe home discharge environment or one that met the child’s medical needs. The researchers also noticed a strong focus on communication-related ethical dilemmas (involving inter-team, team-parent, and team-patient communication). “Because PPAC patients often have long lengths of stay compared to the acute care setting, quality clinical care requires the ongoing communication and coordination of many clinical team members across multiple disciplines for long periods of time alongside parent decision-makers,” says Salter.

Some respondents gave examples of ethically challenging cases which involved multiple different ethical themes. One provider described a case involving a 2-year-old who was no longer dependent on a ventilator or tracheostomy tube living with a parent who was hospitalized for psychiatric issues and came to the hospital intoxicated. The respondent wrote, “The state will not take custody, and no family member steps up to help. What is our obligation to that child? Send him home knowing the danger? Or keep him safe in the hospital?”

Staff at the PPAC relied on a variety of individuals other than ethicists for assistance with these cases. Providers reported engaging supervisors, managers, department leads, peers, legal counsel, the quality and safety team, social workers, care coordinators, or the medical team for help addressing ethical dilemmas and conflicts. More than half (54%) of respondents thought they lacked appropriate resources at their institution to address ethical dilemmas. An ethics committee to provide education and consultation was identified as the most-needed ethics resource. Some respondents identified the need for increased ethics education.

Clinicians in the hospital setting can mitigate some of these concerns for patients transitioning between acute and post-acute care settings. “Institutions should focus on proactive and detailed communication about goals of care,” says Salter. For example, clinicians can identify specific medical and therapy goals that can be achieved in a PPAC setting. It also is important for PPAC facilities to maintain robust referral and care coordination teams and develop and use defined admission criteria and detailed discharge plans.

“Ethicists experienced in the support of pediatric post-acute care facilities should consider submitting case reviews or other types of manuscripts for publication. We would all benefit from more peer-reviewed literature on topics related to ethics in PPAC contexts,” says Salter.

Virtually all patients in long-term acute care hospitals (LTACHs) potentially can benefit from palliative care, but many do not receive it. “Many people do successfully recover after an LTACH stay, especially if younger and relatively healthier before the acute illness,” says Anil Makam, MD, MAS, an associate professor in the Division of Hospital Medicine at San Francisco General Hospital at University of California, San Francisco. However, prior research on older adults showed that the median survival was about eight months.⁴ About one-third died in an inpatient setting (hospital or inpatient post-acute care facility) without ever returning home after an LTACH admission. “Yet these patients had low rates of billed palliative care consultation and low hospice use,” observes Makam.

Makam and colleagues conducted a study on access to palliative care in LTACHs.⁵ Of 42 leaders at LTACHs surveyed, 57% reported having a palliative care program. Most (55%) respondents reported seeing less than half of patients perceived to benefit from palliative care. Of the hospitals without palliative care programs in place, most leaders perceived that palliative care was beneficial and cited financing and staff recruitment as barriers.

“The most surprising finding by far was the real-world immediate impact this research study had on National Association of Long Term Hospitals (NALTH)-member LTACHs,” reports Makam. LTACH leader participants expressed considerable interest in expanding the palliative care service footprint (for the 60% of LTACHs with a palliative care service) and establishing a new palliative care service (among the 40% of facilities without a palliative care service).

“As a result of this study, our two research partner institutions on this study — the Center to Advance Palliative Care (CAPC) and NALTH — have connected, and it has, thus far, led to a fruitful collaboration,” reports Makam. CAPC has presented on establishing palliative care in LTACHs at a NALTH annual conference and has followed up with site consultations for selected NALTH-member LTACHs who are interested in establishing a service.

Some leaders of LTACHs without a palliative service reported that they were able to meet the needs of their patients by providing general palliative care services from other disciplines (such as clinicians, social workers, or nurses). “Even in the absence of a specialized palliative care service, clinicians and clinical staff can provide general palliative care to their patients,” acknowledges Makam.

However, if an LTACH lacks a dedicated palliative care service and their frontline clinicians and clinical staff have inadequate palliative care training, patients may miss out on relief from pain and distress. Those patients may not receive care aligned with their goals of care. “The ethical concern is that they’re not getting care that honors their comfort, dignity, and wishes. It also creates unfairness. Some patients receive this support simply because of where they’re treated, while others do not,” explains Makam.

Hospital ethicists who work in healthcare systems with either embedded or contracted post-acute care facilities can advocate for policies that ensure every seriously ill patient has access to palliative care. Discharge planning and transfer agreements with LTACHs are important areas of focus, asserts Makam.

Clinicians in the hospital setting can help by ensuring high-quality palliative care prior to discharge. This includes initiating goals-of-care and symptom-management discussions before transfer, clearly documenting patients’ preferences and who the primary decision-maker is, and setting realistic expectations for patients with serious illness with a plan to readdress goals of care during the LTACH. “These steps help ensure continuity of compassionate, ethically sound care across settings,” says Makam.

Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.

References

1. Unruh MA, Carney JK, Moreno A, et al. Optimizing ethical care, quality, and safety in long-term services and supports: A position paper from the American College of Physicians. Ann Intern Med. 2025;178(6):839-846.

2. DeCamp M, Snyder Sulmasy L; American College of Physicians Ethics, Professionalism and Human Rights Committee. Ethical and professionalism implications of physician employment and health care business practices: A policy paper from the American College of Physicians. Ann Intern Med. 2021;174(6):844-851.

3. Salter EK, Bajada A, Mullane M, et al. Identifying ethical issues encountered in a pediatric postacute care setting. J Pediatr Clin Pract. 2025;18:200178.

4. Jain S, Gan S, Nguyen OK, et al. Survival, function, and cognition after hospitalization in long-term acute care hospitals. JAMA Netw Open. 2024;7(5):e2413309.

5. Makam AN, O’Riordan DL, Heitner R, et al. Palliative care services in long-term acute care hospitals: A national survey study. J Pain Symptom Manage. 2025;70(1):e34-e43.