Background: The death of a child has lasting effects on caregiver well-being. Some hospitals provide bereavement support services to help families navigate their grief, but research on these services remains limited, particularly regarding caregiver perceptions. Objectives: This study examined bereaved caregivers’ engagement with, and perceptions of hospital-based bereavement support services. Design: An electronic survey design was used. Setting/Subjects: Participants included 55 primary caregivers of children who died at a children’s hospital in the southeastern United States between 2009 and 2024. Measurements: Participants completed an electronic survey identifying services received and perceptions of their helpfulness. All of the measures were created by the research team. Results: Many participants reported not receiving key bereavement support services. Those received and rated most helpful included memory-making items, bedside nutrition at the time of death, and anniversary cards. Grief counseling referrals, breastfeeding resources, and autopsy information were rated least helpful. Conclusions: Findings highlight gaps in service provision and suggest that while grief is highly individualized, certain bereavement supports may be more universally valued. Enhancing access to meaningful bereavement interventions may improve support for grieving families.
Background: The Swedish Palliative Care Guide is a person-centered decision-support tool (including care plans). The aim is to provide guidance to high-quality care throughout the palliative and end-of-life trajectory. Currently, it is used in >600 care units across Sweden, but scientific evaluation of its effects is lacking. Objectives: The aim of this study was to investigate whether use of the Swedish Palliative Care Guide increases quality of end-of-life care. Methods and Design: In this population-based study using data from the Swedish Register of Palliative Care, all registered deaths between 2015 and 2022 were included. Registration was carried out by staff at the care unit where the patient died. Deaths were categorized into four groups based on the implementation process of the Care Guide: pre-implementation (0–2 years before implementation), implementation (first year of implementation), established use (>1 year after implementation) and no use. The primary analysis compared pre-implementation with established use across 11 outcomes measures encompassing communication, symptom relief, and presence at the time of death. Results: A total of 397,761 deaths in 5524 care units were included. Nine of 11 outcomes showed statistically significant improvement in the established use compared with the pre-implementation. The largest percentage change was for end-of-life conversation with patient (77.5% vs. 86.8%) and relief of confusion (30.5% vs. 38.4%). The effect was more pronounced within primary palliative care. Conclusion: Use of the Swedish Palliative Care Guide, a decision-support tool adapted for all diagnoses, increased the quality of care of the patient who are dying, particularly in primary palliative care.
Background: Serious Illness Conversation Programs (SICP) were developed to improve communication with patients with serious illnesses to promote goal concordant care. Limited information is available about whether implementation of an SICP is associated with differential health care utilization. Objective: To determine if care utilization differed for patients with SIC compared to those without. Design: A retrospective cohort study comparing end-of-life care for patients with and without a documented SIC in a large integrated health system after implementation of a SICP. Patients were included if they received a high serious illness score between January 1, 2022, and December 31, 2024, and they died prior to the end of the study period. Measurements: SIC completion and components. Outcome measures were health care utilization in the last 30 days of life within our health system: inpatient admissions/days, ICU admissions/days, emergency department (ED) visits, palliative care, and hospice enrollment/days. Results: Hospice use was higher (32.6% vs. 18.8%, p < 0.001) and ICU admissions were lower (10.9% vs. 13.4%, p = 0.007) among patients who had SIC compared to those without. There was no difference in ED utilization or number of palliative care visits. The proportion of patients with inpatient admissions was higher in the SIC group (44.9% vs. 38.6%, p < 0.001). Conclusion: These findings suggest that while SIC may help define care goals oriented toward reduced utilization of intensive care and increased hospice utilization, further evaluation is needed to understand drivers of ED and inpatient care utilization for patients with a documented SIC.
