Journal of palliative medicine
-
Objective: To examine a rural-serving HBPC program's 12-year experience and historical trends to inform future program direction and expansion. Background: There is limited information about longitudinal trends in mature hospital-based palliative care (HBPC) programs serving racially diverse rural populations. Methods: This is a retrospective cross-sectional study of operational and patient-reported outcomes from the University of Alabama at Birmingham (UAB) Center for Palliative and Supportive Care (CPSC) inpatient (n=11,786) and outpatient (n=315) databases from October 2004 to March 2016. Results: Inpatients were a mean age of 63.7 years, male (50.1%), white (62.3%), general medicine referred (19.5%), primarily for goals of care (84.4%); 47.1% had "do not resuscitate/do not intubate" status and 46.9% were transferred to the Palliative Care and Comfort Unit (PCCU) after consultation. Median time from admission to consultation was three days, median PCCU length of stay (LOS) was four days, and median hospital LOS was nine days. Increased emergency department and cardiology referrals were notable in later years. ⋯ Fatigue, pain, and disturbed sleep were the most common symptoms at the time of the visit; 34.6% reported mild-to-moderate depressive symptoms. Of patients reporting pain (64.8%), one-third had 50% or less relief from pain treatment. Discussion: The CPSC, which serves a racially diverse rural population, has demonstrated robust growth. We are poised to scale and spread our lessons learned to underserved communities.
-
Background: Bereavement support is an integral part of palliative care. However, audits of Australian palliative care services have consistently identified bereavement care as one of the highest priorities for improvement. Objective: We assessed equity of access to bereavement support across Australian palliative care services by using survey data to compare services according to location (metropolitan vs. regional). We also evaluated changes in bereavement support over the last decade by comparing findings to results of a previous Australian study. Design, Setting, and Participants: A national, cross-sectional online survey of Australian palliative care services conducted from August to September 2017. Main Outcome Measures: Services' self-reported provision of bereavement support. Results: One hundred and eighty services (84%) responded. ⋯ Resource limitations presented barriers to provision of bereavement support. Conclusions: Across Australia, in principle, access to bereavement support through palliative care services remains largely equitable. Nevertheless, observed variations in the type of professional delivering care and the level of support indicate that a more consistent approach is required. An increase in the range of supports available compared with a decade ago signifies a more comprehensive approach to bereavement support by many Australian palliative care services.
-
The field of telehealth is rapidly growing and evolving across medical specialties and health care settings. While additional data are needed, telepalliative care (the application of telehealth technologies to palliative care) may help address important challenges inherent to our specialty, such as geography and clinician staffing; the burden of traveling to brick-and-mortar clinics for patients who are symptomatic and/or functionally limited; and the timely assessment and management of symptoms. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. This article, created by experts in telehealth and palliative care, provides a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.
-
Introduction: Terminal bleeding, a distressing symptom experience for patients, caregivers, and health professionals, occurs in a subset of patients in the palliative care setting. Terminal bleeding is often thought of as a large-volume catastrophically fatal event, but it can also occur for a longer period of time and still be the precipitating event for a patient's death. Case Report: We present the case of terminal bleeding in an 87-year-old patient with angiosarcoma, a rare aggressive vascular neoplasm that can occur anywhere in the body but tend to occur more frequently in the head and neck. Discussion: The patient's advanced age and aggressive disease presented challenges in managing the symptoms and precluded many of the conventional recommended interventions to manage bleeding. Conclusion: This case report speaks to the need for multidisciplinary planning that takes prognosis, performance status, previous therapies, and patient preferences into account when caring for patients with advanced cancer.
-
The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.
Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). ⋯ Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.