Policy statements and clinical guidelines confirm the need to provide palliative care (PC) services across the medical care continuum to ease pain and improve quality of life for patients and caregivers. In situations where patients have burdensome symptoms and significant physical or mental limitations that make current clinic-based models unsuitable, home-based palliative care (HBPC) might be the best option. PC clinician leaders and health systems such as Kaiser Permanente, which has nearly 10 years of experience providing HBPC, need research guidance to determine how best to refine HBPC services to meet the rapidly growing demand for HBPC while preserving its effectiveness and affordability.
The proposed study addresses this need by comparing a standard HBPC model that includes routine home visits by a nurse and provider with a tech-supported HBPC model that promotes timely, interprofessional care team coordination via video consultation with the provider while the nurse is in the patient’s home. We will conduct a cluster randomized trial across 15 sites in two Kaiser Permanente regions (Southern California and Northwest). Approximately 130 registered nurses will be randomly assigned to the tech-supported or standard HBPC model, so that half of the patient-caregiver families will receive tech-supported HBPC (approximately 5,000 patients, with about half having a caregiver participating) and the other half will receive standard HBPC.
The project team hypothesizes that tech-supported HBPC will be as effective as standard HBPC in improving outcomes that matter most to patients and caregivers. Among patients, the two primary outcomes measured will be short-term symptom improvement, and in the longer term, days spent at home in the last six months of life. Among caregivers, the primary outcome measured will be their perception of preparedness to help care for their loved one.
The project team will conduct a two-stage process using information from the medical record and phone calls to identify people over the age of 65 who have PC needs—regardless of their clinical condition—that are best met in their homes in a manner consistent with their preferences. Patients may continue receiving disease-directed curative therapy. Specific criteria will be established through input obtained from stakeholders to ensure patients are directed to PC services that best meet their needs and priorities.
Patients and caregivers in both arms will receive the following HBPC intervention components: comprehensive assessment of bio-psycho-social-spiritual needs and care planning; aggressive pain and symptom management; patient and caregiver education/skills training; medication review and management; emotional/spiritual support; care coordination, referral to community resources and other home health services as needed; and around-the-clock phone assistance for urgent matters.
If successful, the more efficient tech-supported HBPC model would translate to significantly expanded, affordable access to the fast-growing number of older patients and their caregivers who are in desperate need of PC services in their homes.