reducing disparities in the quality of advance care planning for older adults

Conditions: Metastatic Cancer; Congestive Heart Failure; Chronic Obstructive Pulmonary Disease; Parkinson Disease; Interstitial Lung Disease; Amyotrophic Lateral Sclerosis; End Stage Liver Disease; End Stage Renal Disease; Diabetes Complications

Summary: this study compares the effectiveness of two different approaches to advance care planning among older african americans and older whites living in the community. the two approaches are a structured approach with an advance care planning conversation led by a trained person using respecting choices (first steps) and a patient-driven approach which includes a five wishes advance care planning form written in plain language. the study will determine which approach is more effective at increasing advance care planning within each racial group and reducing differences between the two groups in advance care planning.

advance care planning (acp) involves patients making decisions about the kind of medical care they would want to receive if they became unable to speak for themselves. patients share their wishes in a written document (living will or healthcare proxy) and/or discuss their wishes with family, friends, and doctors. acp improves the quality of end-of-life care by increasing the likelihood that patients receive care that reflects their preferences and values. seriously ill african americans are less likely to take part in advance care planning and experience lower quality care at the end of life, including poorer communication with clinicians and a lower likelihood of receiving the kind of care that they would want. this study will include 800 seriously or chronically ill community-dwelling older adults (equal number of african americans and whites) and their caregivers from 10 primary care practices at five medical centers in the deep south. eligible patients include those with cancer, advanced heart disease, advanced lung disease, end-stage kidney disease, cirrhosis, diabetes with severe complications, recurrent hospitalizations, or difficulty with basic activities of daily living. for each enrolled patient, one caregiver who is likely to assist the patient with healthcare decisions is also eligible to participate. the goals of the study are to: * compare the effectiveness of two approaches to increasing formal advance care planning (completing written documents like living wills, health care proxies, medical orders for life-sustaining treatments, or other advance directives) and informal advance care planning (having conversations with doctors, family, friends, and others about wishes for future healthcare) for african americans and for whites. * determine which intervention is most effective in reducing differences between african americans and whites in rates of advance care planning. * determine whether the effectiveness of the advance care planning approach differs based on whether the person assisting with advance care planning is of the same or different race as the patient. administered by community health workers, the two advance care planning approaches which will be compared are: * patient-driven approach which includes a five wishes form (advance directive written in easy to understand language) * structured approach with an advance care planning conversation led by a trained person using respecting choices (first step) conversation guide.

Eligibility criteria:
inclusion criteria for patients: * african-american or white * age 65 or greater * english-speaking * residing in non-institutional setting * cognitively able to participate in advance care planning * serious or chronic illness including: metastatic cancer; end stage renal disease; advanced liver disease, heart disease or lung disease; amyotrophic lateral sclerosis, severe parkinson's disease; 2 or more unplanned hospitalizations in the last year; requiring assistance with any basic activity of daily living * serious illness based on the following: clinician answers "no" to the surprise question: "would you be surprised if this person died in the next 12 months?" exclusion criteria for patients: * residence in nursing home or assisted living facility * diagnosis of dementia or unable to consent * documented advance care plan (living will, health care proxy, most form, provider note) * current or prior use of hospice * current or prior use of non-hospice palliative care except inpatient palliative care consultation

Keywords: advance care planning disparities palliative care end of life care african americans