Journal of palliative medicine
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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.
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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.
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Background: Research shows that access to palliative care can help patients avoid dying in hospital. However, access to palliative care services during the terminal hospitalization, specifically, has not been well studied. Objective: To determine whether access to palliative care varied by disease trajectory among terminal hospitalizations. Design, Setting, Subjects: We conducted a population-based retrospective cohort study of decedents who died in hospital in Ontario, Canada between 2012 and 2015 by using linked administrative databases. Measurements: Using hospital and physician billing codes, we classified access to palliative care in three mutually exclusive groups of patients with terminal hospitalization: (1) main diagnosis for admission was palliative care; (2) main diagnosis was not palliative care, but the patient received palliative care specialist consultation; and (3) the patient did not receive any specialist palliative care. We conducted a logistic regression on odds of never receiving palliative care. Results: We identified 140,475 decedents who died in an inpatient hospital unit, which represents 42% of deaths. ⋯ In our regression, dying of organ failure or frailty compared with cancer increased the odds of never receiving palliative care by 4.07 (95% confidence interval [CI]: 3.95-4.20) and 4.51 (95% CI: 4.35-4.68) times, respectively. Conclusions: A third of hospital deaths had no palliative care involvement. Access to specialist palliative care is particularly lower for noncancer decedents. Inpatient units play an important role in providing end-of-life care.