PALLIATIVE AND END-OF-LIFE NEEDS OF PEOPLE RECEIVING CARE IN NURSING HOMES: ANSWERING THE CALL

Many Journal of Hospice & Palliative Nursing readers are acutely aware that palliative care and end-of-life care are integral to the nursing home (NH) setting. Approximately one-quarter of Medicare beneficiaries die in an NH, and 33% to 43.5% of beneficiaries have an NH stay in the last 90 days of life,1 often receiving post-acute care.2 Like other aspects of care, we know that the quality of end-of-life care in NHs is inadequate; numerous studies have documented high rates of hospitalization, potentially burdensome treatments, and undertreated symptoms in this group.3-6 A growing evidence base demonstrates that palliative and hospice services can improve outcomes for seriously ill older adults in NHs, and nurses play a central role in these efforts.7-9

As the COVID-19 pandemic raged across the country, NHs were particularly hard-hit. Current statistics (November 2021) show that NH residents accounted for approximately 18% of deaths, although they comprise fewer than one-half of 1% of the US population.10 Media outlets across the country documented the challenges and failures in preventing, containing, and treating the virus within NHs and other long-term care facilities. The pandemic has also shown a light on long-standing struggles in delivering high-quality NH care. To address these issues, the National Academies of Sciences, Engineering, and Medicine, with support from several sponsoring organizations, formed the Committee on the Quality of Care in Nursing Homes. Its goal was to examine how the United States delivers, finances, regulates, and measures the quality of NH care and to propose strategies to improve care.11

The committee's recently released report entitled, "The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff for external review," underscores the urgency of needed changes across a wide spectrum of areas.12 It calls for significant investment of resources, including funding, to transform the NH workforce; quality measurement, assurance, and improvement; financing; regulations; and health information technology. Palliative and end-of-life care is woven throughout the report and is seen as a key component to the delivery of high-quality NH care. The proposed efforts to enhance palliative and end-of-life care have been echoed by other authors.13

Most hospice and palliative care nurses will deliver services as members of external teams from hospice agencies and health care systems who are contracted by NHs. In this role, hospice and palliative care nurses should commit to accessing and reading the report and, in particular, the sections that explicitly discuss palliative and end-of-life care. The first step is to share the report with colleagues and your organization's leaders. Those of us who work directly with NHs should make concerted efforts to build robust, collegial relationships with NH staff, providers, and leaders.14 Successful partnerships will hinge on palliative care and hospice nurses recognizing the NHs' unique expertise in the care of frail older adults, individuals with disabilities, and those with cognitive impairment. We also must recognize that our colleagues in NHs engage in daily, intimate interactions with residents over weeks to years. As such, they often possess deep knowledge about residents' behaviors, goals, values, symptoms, and fears. Eliciting their insights about what's going on with residents is critical, particularly for residents who are unable to express themselves verbally.

It is essential to understand that many NH staff see themselves as members of residents' extended family. They, too, experience profound losses as residents decline and die and thus, like family members, need to be supported through the grieving process.15 Hospice and palliative care nurses also can help support relationships between NH staff and family caregivers, especially in making end-of-life decisions. In addition, we should provide education and support to increase NH staff's confidence, knowledge, and skills in delivering high-quality palliative and end-of-life care. We can also promote the expertise of NH-based licensed nurses (registered nurses and licensed practical nurses), nursing assistants, and advance practice nurses by encouraging and assisting them to become certified in hospice and palliative nursing.

While nurses and other health care team members across every setting have confronted unprecedented challenges during the pandemic, our colleagues in long-term care settings, including NHs, have been devastated. More than 2000 staff members have died of COVID-19, many contracting the virus at work.10 We pride ourselves as hospice and palliative care nurses for our ability to join our patients and their families on the journey through serious illness. We are experts in relieving suffering and facilitating meaningful life closure. The Committee on the Quality of Care in Nursing Homes report should convince all of us of the work left to be done. Let's make sure that we "lead the way" in advocating for people with serious illness who receive care in NHs, their families, and for their entire community of caregivers.

Note: The entire report and the Executive Summary can be downloaded from the National Academies of Sciences, Engineering, and Medicine website, at [URL].

Mary Ersek, PhD, RN, FPCN

Corporal Michael J. Crescenz VA Medical Center - Philadelphia Leonard Davis Institute, University of Pennsylvania

Betty Ferrell, PhD, FAAN, FPCN

JHPN Editor-in-chief

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