Comparing Ways to Encourage and Improve End-of-Life Care Planning

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Patients who are seriously ill may benefit from advance care planning. In advance care planning, patients make decisions about care they would want to receive if they become unable to speak for themselves. Planning can help patients make sure that the care they receive at the end of life reflects their wishes. For example, patients may think about who should make medical decisions on their behalf, what medical treatment they want or don’t want, and cultural beliefs that may affect their decisions.

Blacks are less likely than whites to take part in advance care planning. Compared with whites, blacks are more likely to receive costly, poor-quality care that doesn’t reflect their wishes at the end of life. Blacks are also less likely to use hospice care, more likely to have preventable hospital stays, and more likely to have poor communication with doctors than whites. Researchers don’t know if these differences relate to differences in patients’ cultural beliefs, knowledge, or access to advance care planning. This study is comparing two approaches to advance care planning to see whether they increase advance care planning overall and for different racial groups.

Who can this research help?

Healthcare providers can use findings from this study to learn about ways to engage patients with serious illnesses in advance care planning.

What is the research team doing?

The research team is working with 10 clinics at 5 medical centers in the southern United States. They are enrolling 800 adults ages 65 or older who are seriously ill. The team is inviting the patients’ caregivers to enroll. Patients in the study are at high risk losing the ability to do daily tasks, having a hospital stay, or dying. Half the patients are black and half are white. The team is assigning clinics by chance to offer one of two approaches to advance care planning.

In one approach, called Respecting Choices First Steps, trained community members who don’t work in health care help patients and families with advance care planning. The community members help patients choose a person to make healthcare decisions, talk about beliefs that may affect future medical decisions, talk about preferences for care if a serious illness or injury occurs, and create a written care plan.

In the other approach, clinics give patients the Five Wishes document, which is easy to use and written in language that is easy to understand. Five Wishes helps patients think about who can make medical decisions on their behalf, what medical treatments they want or don’t want, how they want others to treat them, and what they want family members to know. The document helps patients talk about their wishes with family, friends, and doctors, and put those wishes in writing.

The team is also assigning all patients in the study by chance to get help with advance care planning from a trained community member who is either of the same race or a different race. All patients get a card with contact information and a picture of the person who helps them with care planning. Patients in the Respecting Choices group get in-person or phone-based help. Patients in the Five Wishes group get phone-based help.

The study aims to answer the following questions:

• How much does each approach affect the likelihood that patients will complete an advance care plan?
• Is one approach better at reducing differences between blacks and whites in the likelihood of completing an advance care plan?
• Is one approach better at reducing differences in the quality of care blacks and whites receive?
• Are patients more likely to complete advance care planning if the person helping them is the same race as the patient?
• What makes advance care planning easier or harder for blacks and whites?

The research team is following patients and caregivers for one year. The team is tracking whether patients complete a formal advance care planning document or talk about their wishes for care with family members, caregivers, or doctors. The team is also examining

• Patients’ readiness for advance care planning
• Whether patients and caregivers agree about patients’ preferences for care
• Caregivers’ comfort making medical decisions for patients who are unable to do so
• Patients’ and caregivers’ quality of life

If patients die during the study, the research team speaks with caregivers to find out their satisfaction with the patient’s care and whether they found making decisions for the patient stressful. To see if patients received care that matched their preferences at the end of life, the team is reviewing patients’ medical records. The team is continuing to follow patients who are alive after the first year of the study for the next four years.

Advisory groups of patients, caregivers, doctors, and religious leaders are helping to plan and carry out the study.

Research methods at a glance