Journal of palliative medicine
-
Background: An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond. Objective: This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death. Setting/Participants: A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews. Data Collection: Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews. Results: The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey. Conclusions: PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.
-
Background: Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting caregivers in symptom assessment (SA) may reduce suffering. Objective: Pilot an SA-Toolkit for caregivers to assess older adults' symptoms at home. ⋯ Patients found the symptom illustrations easy to use (8.7 on 10-point scale), but the Faces Scale less so (7.3/10) because it provided "too many choices." Caregivers liked the SA-Toolkit because it was easy to use; nearly all (10/11, 90%) would recommend it to others. Conclusions: The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in SA. The SA-Toolkit is acceptable and may help reduce suffering in frail, older patients.
-
Observational Study
Identifying Palliative Patients in General Practice: Focusing on the Place of Death and the Vital Role of Specialized Home Palliative Care: An Observational Study.
Objectives: Specialist palliative care was introduced into the German health care system for patients at the end of life. The primary objective of this study was to assess whether the provision of specialist home palliative care (SHPC) for outpatients increased the likelihood of patients dying at home. Methods: We studied data collected in 2015 from a German statutory health insurance company covering 3.872 million people. We evaluated how many patients were identified as needing palliative care and whether these patients were able to stay at home until death. ⋯ The probability of dying at home increases already with the label "palliative patient" and gets stronger if care is provided by a specialist palliative care team. Conclusion: Most palliative patients are able to die at home. Palliative care teams are responsible for a small part of these patients. Despite the high symptom burden in this group, most are able to die at home.
-
Background: Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it. Objective: This study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon. ⋯ They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone. Conclusions: Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.
-
Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams. Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. ⋯ Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.