Place of Death for Young Adults With Chronic Illness.

BACKGROUND: Little is known about where young adults with chronic illness die in the United States and factors associated with place of death. OBJECTIVES: This study aimed to examine place of death and factors associated with place of death for young adults with chronic illness using the most recent national data. METHODS: Our sample ( N = 405,535) from the National Center for Health Statistics Division of Vital Statistics death certificate data (2003-2018) included young adults (age 18-39 years) who died from chronic conditions common in childhood or young adulthood. Conditions were grouped by underlying pathophysiology (oncological, cardiovascular, neuromuscular, metabolic, hematological/immunological, renal, chromosomal/congenital, gastrointestinal, and respiratory). Place of death was dichotomized into acute care (inpatient, outpatient/emergency room, and dead on arrival) or nonacute care (home, hospice, nursing home/long-term care, other, and unknown). Examined factors were gender, year of death, age, race (White, Black, Asian/Pacific Islander, American Indian/Alaskan Native), cause of death, and city of residence population (100,000 or greater and under 100,000). Descriptive statistics and logistic regression were used to examine factors related to place of death. RESULTS: Over half of young adults died in acute care settings. Young adults who were Asian/Pacific Islander or Black or who died from a respiratory or renal cause of death were most likely to die in an acute care setting. Rates of acute care death decreased over the studied years. DISCUSSION: Many young adults died in an acute care setting. Race and cause of death were the most influential factors associated with place of death. Young adults with an oncological cause of death were less likely to die in an acute care setting than patients with other underlying causes. This may indicate that specific care needs or preferences at the end of life may differ in certain disease populations and may affect place of death. Previous research has shown similar results in other developmental populations; however, given the complex psychosocial concerns that often arise during young adulthood, further research is needed to describe how the young adult status may specifically affect place of death.

State of the Science of Palliative Care in Solid Organ Transplantation.

INTRODUCTION: Both solid organ transplant candidates and recipients and their family caregivers have complex care needs and may benefit from palliative care. But palliative care is not often considered as part of transplant care despite palliative care being promoted as an important component of transplant care both before and after solid organ transplantation. Further, the current state of the science of palliative care in solid organ transplantation has not been well-documented. OBJECTIVE: To describe the state of the science of palliative care in solid organ transplant and identify gaps in the literature. METHODS: Four electronic databases were searched using controlled vocabulary words and synonymous free text to find articles on palliative care and solid organ transplant. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and checklist were also used. RESULTS: Twenty articles were included in the final review for synthesis, 18 of which involved transplants for adults only. Twelve articles described palliative care for patients before transplant, four articles examined palliative care for patients after transplant, primarily at the end-of-life, and four articles described transplant provider perspectives on palliative care. The reviewed evidence suggested that patients could be benefited by palliative care both pre and posttransplant, particularly for symptom management and advance care planning and that transplant providers faced many barriers to implementing palliative care in practice. DISCUSSION: There is limited research on palliative care following solid organ transplantation, particularly outside of hospice care. Much of the prior research on this topic has described adult patients.

Long-term health-related quality of life of adult patients treated with extracorporeal membrane oxygenation (ECMO): An integrative review.

BACKGROUND: Extracorporeal membrane oxygenation (ECMO), a rescue treatment for patients with severe pulmonary and/or cardiac dysfunction, is increasingly being used worldwide. A better understanding of long-term health-related quality of life (HRQOL) is needed. OBJECTIVE: To synthesize research on long-term (at least 6 months post-ECMO) HRQOL of adults treated with ECMO. METHODS: In this integrative review, we searched 3 electronic databases and did a hand search of relevant journals for articles published 2000-2019, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: Thirty-one studies, representing 913 patients treated with ECMO, were included. Long-term HRQOL was slightly better for patients treated with veno-venous ECMO than veno-arterial ECMO, and mental health outcomes tended to be better than physical ones. Survivors frequently experienced physical complications, functional limitations, anxiety, depression, and post-traumatic stress symptoms, although improvements were observed over time. CONCLUSIONS: Early identification and management of physical and mental health problems may improve HRQOL outcomes.

Assessing the Unique Experiences and Needs of Muslim Oncology Patients Receiving Palliative and End-of-Life Care: An Integrative Review.

The objective of this review was to detail the experiences of Muslim oncology patients receiving palliative and end-of-life care and identify where gaps in the providing of culturally aware care occur. We also sought to examine ways in which providers could be better educated on the needs of Muslim patients at the end-of-life and identify barriers Muslims faced when being treated with hospice and palliative care models developed for non-Muslim populations. We conducted a search in April 2018 in the National Library of Medicine and CINAHL databases using the search terms "palliative care," "Muslim," and "cancer." Included were articles with focuses on adult Muslims with palliative and end-of-life care experiences. We then followed the PRISMA guidelines for an integrative review and used a data extraction matrix to identify 20 papers that met the inclusion criteria of the review. We identified four major themes patient experiences, patient care delivery suggestions, Muslim provider experiences, and definitions of death, present in all 20 papers of the review. Each of the included papers was categorized based on the dominant theme in the paper. This review ultimately found that the care provided to Muslim patients is subpar for the standard of culturally competent care and that the needs of Muslim patients at the end-of-life, as well as the needs of their families, are not being met. Moving forward further research on this topic is needed with a particular focus on examining the experiences of terminally ill Muslim patients receiving treatment in non-Muslim majority settings.