Journal of palliative medicine
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Randomized Controlled Trial
Reality of Family Caregiving for Hispanics With Alzheimer's Disease and Related Dementias: A Qualitative Analysis.
Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). ⋯ Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.
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Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. ⋯ All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. Conclusion: The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.
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Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. ⋯ System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.
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Background: Patients with heart failure frequently have significant disease burden and complex psychosocial needs. The integration of palliative care into the management of these patients can decrease symptom burden throughout their course of illness. Therefore, in 2009, we established a cardiac palliative care clinic colocated with heart failure providers in a large academic heart hospital. ⋯ Operational themes about clinic proximity and the use of telehealth as well as communication themes around provider-provider communication and the understanding of palliative care were particularly salient. Conclusions: The facilitators and barriers identified have broad applicability that are independent of the etiological nature (e.g., cancer, pulmonary, neurological) of any specialty or palliative care clinic. Moreover, the strategies we used to implement improvements in our clinic may be of benefit to other practice models such as independent and embedded clinics.
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Background: Characteristics of patients undergoing outpatient evaluation for advanced cardiac therapies are largely unknown. Objective: To describe demographics, baseline quality of life, and frailty of patients undergoing evaluation for advanced therapies at the time of presentation for evaluation in an outpatient cardiac palliative care clinic and examine key quality of life differences across patients. Design: Retrospective chart review to report baseline demographics and quality of life. ⋯ Patients with a nonischemic etiology had a 3.32 times higher rate of anxiety than nonischemic patients (95% confidence interval = 1.05-10.54, p = 0.041). Conclusion: As patients undergoing transplant evaluation have high levels of depression, anxiety, and frailty, interdisciplinary care teams will be needed to properly manage the needs of this complex population. These results can inform efforts to integrate palliative care into advanced cardiac therapy and improve patients' experiences.