ABSTRACT
BACKGROUND: No prior studies have examined the effects of home-based primary care (HBPC) in persons living with dementia (PLWD), within an ecosystem of serious illness care in an integrated healthcare system. Our objectives were to compare the characteristics of PLWD receiving HBPC and their hospital utilization and end-of-life care, with those of a matched comparison group, and to understand the experiences of family caregivers of PLWD receiving HBPC. METHODS: This mixed-methods study used a retrospective observational cohort design with PLWD receiving HBPC (n = 287) from 2015 to 2020 and a strata-matched comparison group (n = 861), and qualitative phone interviews with 16 HBPC family caregivers in 2020. Inverse probability of treatment weighting propensity score-adjusted models were used to compare time-to-first hospital-based utilization and, for decedents, home palliative and hospice care and place of death. Care experience was captured through caregiver interviews. RESULTS: Patients receiving HBPC had a similar risk of hospital utilization [adjusted hazard ratio, 1.06 (95% CI: 0.89-1.26), p = 0.51] as a matched non-HBPC comparison group after a median follow-up of 199 days. However, HBPC decedents (n = 159) were more likely to receive home palliative care or hospice [rate ratio, RR: 1.23 (95% CI: 1.07-1.42), p < 0.01] and to die at home [RR: 1.66 (95% CI: 1.35-2.05), p < 0.001] than were non-HBPC decedents (n = 423). Caregivers reported that HBPC provided coordinated, continuous, and convenient care that was aligned with families' priorities and goals; however, some expressed unmet needs, especially for help paying for personal care and medical supplies/equipment, and a desire for clearer communication about program operations and more quality oversight for contract services. CONCLUSIONS: Although HBPC for PLWD was associated with a similar risk of hospital utilization compared to a matched non-HBPC comparison group, HBPC resulted in more patient-centered end-of-life care for decedents. Prospective studies of HBPC that further elicit and address unmet needs are warranted.
Subject(s)
Dementia , Home Care Services , Dementia/therapy , Ecosystem , Humans , Primary Health Care , Prospective Studies , Retrospective StudiesABSTRACT
OBJECTIVES: The current evidence base regarding the effectiveness of home-based palliative care (HomePal) on outcomes of importance to multiple stakeholders remains limited. The purpose of this study was to compare end-of-life care in decedents who received HomePal with two cohorts that either received hospice only (HO) or did not receive HomePal or hospice (No HomePal-HO). DESIGN: Retrospective cohorts from an ongoing study of care transition from hospital to home. Data were collected from 2011 to 2016. SETTING: Kaiser Permanente Southern California. PARTICIPANTS: Decedents 65 and older who received HomePal (n = 7177) after a hospitalization and two comparison cohorts (HO only = 25 102; No HomePal-HO = 22 472). MEASUREMENTS: Utilization data were extracted from administrative, clinical, and claims databases, and death data were obtained from state and national indices. Days at home was calculated as days not spent in the hospital or in a skilled nursing facility (SNF). RESULTS: Patients who received HomePal were enrolled for a median of 43 days and had comparable length of stay on hospice as patients who enrolled only in hospice (median days = 13 vs 12). Deaths at home were comparable between HomePal and HO (59% vs 60%) and were higher compared with No HomePal-HO (16%). For patients who survived at least 6 months after HomePal admission (n = 2289), the mean number of days at home in the last 6 months of life was 163 ± 30 vs 161 ± 30 (HO) vs 149 ± 40 (No HomePal-HO). Similar trends were also noted for the last 30 days of life, 25 ± 8 (HomePal, n = 5516), 24 ± 8 (HO), and 18 ± 11 (No HomePal-HO); HomePal patients had a significantly lower risk of hospitalizations (relative risk [RR] = .58-.87) and SNF stays (RR = .32-.77) compared with both HO and No HomePal-HO patients. CONCLUSION: Earlier comprehensive palliative care in patients' home in place of or preceding hospice is associated with fewer hospitalizations and SNF stays and more time at home in the final 6 months of life. J Am Geriatr Soc, 2019.
