Integrating Perspectives on Family Caregiving After Critical Illness: A Qualitative Content Analysis.

BACKGROUND: To date, no intervention has definitively improved outcomes for families of critical illness survivors. An integrated perspective on caregivers' needs after critical illness could help identify high-priority intervention targets and improve outcomes. OBJECTIVES: To obtain diverse perspectives on the needs, barriers and facilitators, and social determinants of health associated with family caregiving across the critical illness continuum and assess the extent to which successful caregiving interventions in other populations may be adapted to the critical illness context. METHODS: This qualitative content analysis of 31 semistructured interviews and 10 focus groups with family caregivers, health care providers, and health care administrators explored family caregivers' needs during post- intensive care unit (ICU) transitions and the barriers and facilitators associated with addressing them. Trained coders analyzed transcripts, identified patterns and categories among the codes, and generated themes. RESULTS: Caregivers have 3 instrumental needs: formal and informal support, involvement in care planning, and education and training. Only caregivers described their self-care and mental health needs. Social determinants of health are the key barriers and facilitators shaping the caregivers' journey, and caregiving as a social determinant of health was a prominent theme. CONCLUSIONS: Caregivers have instrumental, self-care, and mental health needs after critical illness. Adapting hands-on and skills training interventions to the post-ICU setting, while tailoring interventions to caregivers' health-related social context, may improve caregiver outcomes.

Concurrent Hospice and Dialysis Care: Considerations for Implementation.

IMPORTANCE: Hospice positively impacts care at the end of life for patients and their families. However, compared to the general Medicare population, patients on dialysis are half as likely to receive hospice. Concurrent hospice and dialysis care offers an opportunity to improve care for people living with end-stage kidney disease (ESKD). OBJECTIVE: We sought to (1) develop a conceptual model of the Program and (2) identify key components, resources, and considerations for further implementation. DESIGN: We conducted a template analysis of qualitative interviews and convened a community advisory panel (CAP) to get feedback on current concurrent care design and considerations for dissemination and implementation. PARTICIPANTS: Thirty-nine patients with late-stage chronic kidney disease (CKD), family caregivers, bereaved family caregivers, hospice clinicians, nephrology clinicians, administrators, and policy experts participated in interviews. A purposive subset of 19 interviewees composed the CAP. MAIN MEASURES: Qualitative feedback on concurrent care design refinements, implementation, and resources. KEY RESULTS: Participants identified four themes that define an effective model of concurrent hospice and dialysis: it requires (1) timely goals-of-care conversations and (2) an interdisciplinary approach; (3) clear guidelines ensure smooth transitions for patients and families; and (4) hospice payment policy must support concurrent care. CAP participants provided feedback on the phases of an effective model of concurrent hospice and dialysis, and resources, including written and interactive educational materials, communication tools, workflow processes, and order sets. CONCLUSIONS: We developed a conceptual model for concurrent hospice and dialysis care and a corresponding resource list. In addition to policy changes, clinical implementation and educational resources can facilitate scalable and equitable dissemination of concurrent care. Concurrent hospice and dialysis care must be systematically evaluated via a hybrid implementation-effectiveness trial that includes the resources outlined herein, based on our conceptual model of concurrent care delivery.

Description and Outcomes of an Innovative Concurrent Hospice-Dialysis Program.

BACKGROUND: Compared with the general Medicare population, patients with ESKD have worse quality metrics for end-of-life care, including a higher percentage experiencing hospitalizations and in-hospital deaths and a lower percentage referred to hospice. We developed a Concurrent Hospice and Dialysis Program in which patients may receive palliative dialysis alongside hospice services. The Program aims to improve access to quality end-of-life care and, ultimately, improve the experiences of patients, caregivers, and clinicians. OBJECTIVES: We sought to describe (1) the Program and (2) enrollment and utilization characteristics of Program participants. METHODS: We conducted a quantitative description of demographics, patient characteristics, and utilization of Program enrollees. RESULTS: Of 43 total enrollees, 44% received at least one dialysis treatment, whereas 56% received no dialysis. The median (range) hospice length of stay was 9 (1-76) days for all participants and 13 (4-76) days for those who received at least one dialysis treatment. The average number of dialysis treatments was 3.5 (range 1-9) for hemodialysis and 19.2 (range 3-65) for peritoneal dialysis. Sixty-five percent of enrollees died at home, 23% in inpatient hospice, and 12% in a nursing facility; no patients died in the hospital. CONCLUSIONS: Our 3-year experience with the Program demonstrated that enrollees had a longer median hospice stay than the previously reported 5-day median for patients with ESKD. Most patients received no further dialysis treatments despite the option to continue dialysis. Our experience provides evidence to support future work testing the effectiveness of such clinical programs to improve patient and utilization outcomes.