Impact of Advance Care Planning Coaching for Patients with Chronic Kidney Disease
My Way stands for “Make Your Wishes About You”, which is exactly what this project wants to help patients with chronic kidney disease (CKD) do. Led by Dr. Dale Lupu, the My Way research project is testing whether meeting with a trained coach can help patients with CKD engage in advance care planning.
Advance care planning is how people can have some control over their care in the future should they become unable to speak for themselves. Sometimes people think of advance care planning as merely filling out forms (known as Advance Directives or Living Wills) that specify who should make medical decisions for them in the future and whether they want resuscitation or other medical procedures at the end of life. But advance care planning is more than that. As Ellen Goodman of the Conversation Project says, advance care planning is a “conversation on values – about what matters to you, not what’s the matter with you.”
Numerous studies have documented that patients with kidney disease want to engage in advance care planning (ACP) with their nephrology care teams. Clinical practice guidelines clearly recommend ACP as an important component of shared decision making and as essential to quality CKD management. Yet, there is a disconnect: only 6% to 38% of dialysis patients have an advance care plan, and most report never engaging in such discussions with their nephrologists.
The Centers for Medicare and Medicaid Services began paying for ACP discussions in January 2016. However, little is known about how to implement such discussions in a patient-centered way before patients need to decide whether to go on dialysis.
The My Way project is a randomized clinical trial comparing two ways to encourage advance care planning. In one arm of the study, the nephrology practice gives patients the My Way patient education materials and state-specific advance directive forms and suggests that the patient initiate a conversation with their doctor. In the second arm of the study, the patient meets for about an hour with a trained coach to discuss their values and preferences and, if the patient is ready, translate those into the advance care planning forms. The coach then follows up by telephone to encourage the patient to talk with their doctor, talk with their family, and complete the planning process.
Funding the project
The My Way Project is funded by the Greater Value Portfolio of the Patrick and Catherine Weldon Donaghue Medical Research Foundation. The Donaghue Foundation provides grants for medical research of practical benefit.
The My Way study is a collaboration between the GW School of Nursing, the GW Milken Institute School of Public Health (SPH), the Coalition for the Supportive Care of Kidney Patients (CSCKP), and four nephrology practices: