The word hospice derives from the Latin, hospitum, meaning hospitality or place of rest and protection for the ill and weary. When people think about hospice care, they usually think of services being delivered in a patient's home or a freestanding hospice facility. Many are surprised to learn that the Hospice Medicare Benefit, a primary payer of hospice services, allows for hospice care in assisted living facilities (ALFs) and skilled nursing facilities (SNFs), the latter of which are commonly referred to as nursing homes.
Restorative Care vs. End-of-Life Care
Nursing homes are designed for restorative care such as rehabilitation and stabilization. Most facility social workers have little time to spend with any one resident, much less give a resident and family the extra attention needed for optimal end-of-life support. Caseloads are high, regulations require time-consuming documentation, and many nursing home social workers have additional responsibilities related to tasks such as admissions, marketing, discharge planning, and participating in regular meetings. Although nursing homes have registered nurses, certified nursing assistants, and, typically, a social worker, hospice care requires expertise and skill in the kinds of symptom management, family communication, psychological and education needs that often arise for patients and families at the end of life.
End of Life in a Nursing Home
Presently there are 1.5 million people residing in nursing homes, and nearly a quarter of deaths in the United States occur in these facilities. However, nursing homes are designed for restorative care such as rehabilitation and stabilization rather than dignified, private passing's.
- Sue Smith, MSW, LCSW, supervisor of the facilities care team at Hospice and Palliative Care Center of Alamance-Caswell, notes that in such environments privacy is often compromised or nonexistent. "This can make things difficult for families and patients who are looking for a safe space to share or process what they are feeling as well as for roommates who may be anxious about death and who may be experiencing their own grief," she says.
- When an elderly patient is ending their life in a nursing home, they often find themselves distant from relatives and friends. Some live out of town or have competing responsibilities or personal challenges that limit their ability to visit as often as they would like. These and other factors can contribute to patients feeling isolated and/or depressed and can cause frustrations, stress, and feelings such as anger, guilt, and shame in loved ones. Smith says hospice social workers often become links for families living at a distance by "relaying information, giving updates, understanding the situation a family is in, and reassuring them that their loved one is comfortable and cared for."
- The metrics used by skilled nursing facilities that assess the quality of care may not be congruent with end-of-life care. For example, reduced fluid intake and dehydration are expected parts of the dying process but may be viewed negatively by facility staff who may want a family to consider IV fluids. A hospice social worker, on the other hand, would view these symptoms within the context of terminal illness and patient wishes.
- Under the existing Medicare rules, patients cannot concurrently receive both 'skilled care' (meaning rehabilitative care such as physical or occupational therapy) and hospice so in a nursing home they may have to choose one over the other. Given the fact that the Medicare benefit for 'skilled' care also pays for the nursing home room and board for a certain number of days, while the Hospice Medicare Benefit does not, is a disincentive for the facility to shift from rehabilitative care to hospice care.
A Team Effort
Frontline employees working in nursing homes say that hospice social workers provide a welcome layer of extra support, needed expertise in pain and symptom management, and helpful bereavement care for families. Caitlin Connolly, MSW, LICSW, a social worker with Hospice of the Northwest, says, "The value of having a hospice social worker in addition to an SNF social worker is that hospice social workers have specific expertise with regard to end-of-life care and facilitating delicate, often difficult conversations."
The end of life can be troubling in a nursing home setting. Hospice specialists are working with nursing home employees to gently transition care from rehabilitation to peaceful passing. This sensitive task takes a specialist in both modalities.
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