Journal of palliative medicine
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Introduction: Patients with cirrhosis have a decreased quality of life due to decompensations of their underlying disease. While liver transplantation (LT) has improved outcomes and quality of life for patients with cirrhosis, many patients die or are delisted before transplant. Despite high morbidity and mortality, palliative care (PC) services are underutilized for patients with cirrhosis. ⋯ Discussion: This study shows many LT centers do not engage their patients in advance directive discussions and highlights the underutilization of PC services in the LT evaluation process. Our results also show minimal advancement in the collaboration between PC and transplant hepatology over the last decade. Encouraging or requiring LT centers to hold advance directive discussions and incorporate PC providers into the transplant team is a recommended area for improvement.
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In this first segment of the emergency palliative care case series, we present a patient who arrives to the emergency department (ED) with signs of impending death in the setting of a newly diagnosed nonsurvivable condition. The patient has a history of chronic and serious illness including metastatic lung cancer, but her ED presentation is prompted by new symptoms of abdominal pain and diarrhea that are not immediately attributable to her known history and reflect the onset of a catastrophic process. Palliative care consultation is requested after surgery determines that that patient is not a candidate for surgical intervention. The palliative care provider plays an important role in supporting aggressive symptom management, elucidating goals of care, and rapidly facilitating disposition.
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There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. ⋯ Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.
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Context: Despite the increased number of people living with Alzheimer's disease and related dementias (PLWD), limited early palliative care interventions exist for this population. Adapting promising interventions for other progressive disease conditions may address this need. Few published studies have examined this topic using recognized adaptation frameworks. ⋯ The prioritization matrix was very useful in guiding additional intervention refinements, incorporating suggestions deemed highly important and improving the clarity of SUPPORT-D™. Conclusion: Adapting existing interventions for use by PLWD and caregivers is a practical approach that can increase the speed of translation of applicable and effective interventions used in other populations. Early feedback, prioritized using a matrix, helped further refine the initial adaptation.
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Background: The number of individuals dying of Alzheimer's disease and related dementias (ADRDs) is steadily increasing and they represent the largest group of hospice enrollees. In 2020, 15.4% of hospice patients across the United States were discharged alive from hospice care, with 5.6% decertified due to being "no longer terminally ill." A live discharge from hospice care can disrupt care continuity, increase hospitalizations and emergency room visits, and reduce the quality of life for patients and families. Furthermore, this discontinuity may impede re-enrollment into hospice services and receipt of community bereavement services. ⋯ However, some believed they would have to wait for a medical crisis (n = 6) to re-enroll, while others (n = 10) questioned the appropriateness of hospice for patients with ADRDs if they cannot remain in hospice care until death. Conclusions: A live discharge for ADRD patients impacts caregivers' decisions on whether they will choose to re-enroll a patient who has been discharged alive from hospice. Further research and support of caregivers through the discharge process are necessary to ensure that patients and their caregivers remain connected to hospice agencies postdischarge.