End-of-life care and decisions are an emotional and stressful process for both the patient and surrounding family members. Death is part of life that everyone goes through, yet it remains a traumatic experience. Older adults face end-of-life issues when they choose to receive therapeutic care rather than aggressive treatment, and go into hospice care. In hospice, residents will receive palliative care, where the number one goal is to make sure that the resident’s quality of life is maintained.
The focus of hospice care and coordination should be on the hospice resident. However, the stress and turmoil that family members face should not be ignored. In fact, the American Cancer Society suggests family meetings and respite care to be central services provided by hospices. A July 2014 study published in the Journal of American Medical Directors Association looked into the perceptions that family members of hospice patients experience, when patients go into hospice. The study posed two questions: 1) whether family members of nursing home residents experienced differently compared to family members of community dwelling hospice patients with aspects such as anxiety, depression and quality of life; and 2) what the family members’ perceptions and experiences were with end-of-life care in nursing homes. The researchers conducted interviews with family members residing in both settings and categorized various experiences that the family members described.
The results were informative. First, there were little differences that were described between family members who had patients receiving hospice care in nursing homes, and living in the community. Both settings evoked similar issues, such as depression and anxiety. Regarding the second question, family members described their perceptions on how hospice collaborated with the nursing homes, on the family’s own expectation of care, on communication between the facility and the family, and on resident care issues. About a third of the family members who responded described incidents that may indicate neglect. Family members expressed frustration with how pressure ulcers were treated, or when patients experienced falls at the facility. Overall, families expressed frustration with how many barriers they faced in order to get good end-of-life care for their loved ones, and sought support for family caregivers. The researchers concluded that an assessment of the family’s capacity to care for their loved one was essential so that family members can actively participate in the resident’s care. Furthermore, they suggested that nursing homes develop a system that would encourage family involvement, and actively incorporate family suggestions as part of the resident’s care plan.
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