Patients with serious illness arising from cancer, heart failure (HF), and chronic obstructive pulmonary disease (COPD) often receive poor quality of care, resulting in unmitigated pain and related symptoms, unmet psychosocial needs, and significant caregiver burden. Palliative care—a patient-centered approach that provides pain and symptom management and psychosocial and spiritual support—has strong evidence for improved outcomes for seriously ill patients. Although similar to hospice care in its focus on comfort measures, palliative care differs from hospice in that it may be offered early in the course of an illness and in conjunction with other therapies intended to prolong life. Most palliative care programs are hospital based; few offer care at home, where patients spend most of their time and require the most support.
We will compare outcomes from two groups: patients who receive enhanced usual care (EUC), with usual care enhanced by provider training in palliative care, and patients who receive home-based palliative (HBPC) care provided by a primary care team. About 1,155 seriously ill patients with cancer, HF, and COPD (and 884 of their caregivers) will be randomly assigned to either group.
The HBPC model will be integrated into primary care clinics. HBPC team members—a physician, nurse, social worker, and chaplain—will provide pain and symptom management, psychosocial and spiritual support, disease management education, and other services in response to patient and caregiver needs. Services are delivered at the patient’s home. The model also features a 24/7 call center.
Our study will determine whether HBPC, compared with EUC, results in greater reduction in patients’ pain, symptoms, depression, and anxiety while improving hope and increasing survival. We will determine whether HBPC is more effective in reducing emergency department visits and hospital stays, which are often associated with preventable medical crises and increase anxiety and stress among patients and caregivers. We also will determine whether HBPC, compared with EUC, results in greater improvement in caregiver depression, anxiety, and burden while improving caregivers’ experience during the patient’s last days of life.
In keeping with the patient centeredness of palliative care, patients and caregivers helped plan our study. They identified the need for better support in the home as well as the need for 24/7 telephone access to clinicians. Our study partners also include clinicians with the participating primary care clinics and Blue Shield of California, an insurance company that will provide reimbursement for the HBPC program. Blue Shield is committed to implementing the HBPC model as a standard benefit for policyholders should it result in improved patient and caregiver outcomes over EUC. These patient and stakeholder partners, as well as our partnering national patient and provider groups, will assist in implementing the study and disseminating its results.
- Beth Caldwell, Patient Stakeholder
- Sara Barton, Caregiver Stakeholder
- James Peterson, Patient Stakeholder
- Michael Daniels, Caregiver Stakeholder
- Mimi Lee, Caregiver Stakeholder
- Bruce Gould, MD, Community Oncology Alliance Patient Advocate Network
- Erica Phung, American Heart Association
- Kathleen Kelly, Family Caregiver Alliance: National Center on Caregiving
Other Stakeholder Partners
- Shari M. Ling, MD, Centers for Medicare and Medicaid Services
- Mark Crafton, Joint Commission
- Bruce Smith, MD, Cambia Health Solutions
- Philip Chase, MD, HealthNet
- Marcy Carty, MD, Blue Cross Blue Shield of Massachusetts
- James Mittelberger, MD, United Healthcare/Optum
- Jon Broyles, Coalition to Transform Advanced Care
- Ira Byock, Providence Health and Services
- Marcus Thygeson, MD, Blue Shield of California
- Terry Hill, MD, Hill Physicians Medical Group
- Chris Van Gorder, Scripps Medical Group
- Melvyn Sterling, MD, St. Joseph’s Medical Group
*All proposed projects are approved subject to a programmatic and budgetary review by PCORI, and the acceptance of PCORI’s contract terms and conditions.