PCORI implementation projects promote the use of findings from PCORI-funded studies in real-world healthcare and other settings. These projects build toward broad use of evidence to inform healthcare decisions.
This PCORI-funded implementation project is expanding the use of an advance care planning program to support end-of-life care discussions for patients with kidney disease at dialysis clinics across the United States.
|Many people with end-stage kidney disease are seriously ill. More than half die within a year of starting dialysis, a treatment required to remove toxins from the blood once the kidneys can no longer do so. People with kidney disease may receive a high, and often unwanted, intensity of care at the end of life. Talking with their healthcare team about end-of-life care options can help patients with kidney disease get the care they want in their last years.|
What is the goal of this implementation project?
Many patients on dialysis want to discuss end-of-life care with their doctors. Yet less than 10 percent of patients report doing so. In advance care planning, or ACP, patients work with their care team to address future decisions that may be needed towards the end of life. It focuses on patients’ preferences for the health care they would want to receive if they become unable to speak for themselves.
A PCORI-funded research study tested an ACP program to help patients on dialysis discuss end-of-life care with their doctors and social workers. Patients who took part in the program had high uptake of end-of-life care planning. For example, 63 percent had doctors’ orders in place that stated their wishes about life-sustaining treatment.
This project is expanding the use of the ACP program to dialysis clinics across the United States to support discussions and planning for end-of-life care. On the advice of the stakeholder advisory board, the project has been renamed HIGHway, or Honor Individual Goals and Hopes.
What will this project do?
The project team is putting the HIGHway program in place at 50—60 dialysis clinics across the United States. The three largest dialysis organizations manage these clinics.
First the project team is adapting the program for use with all patients with kidney disease, not just patients who are the most seriously ill. The team is also adapting it for patients on home dialysis using telehealth. Telehealth provides care to patients remotely using phone or video.
In the program, patients and their family members meet with their dialysis social worker or nurse case manager to talk about their values and concerns for end-of-life care. Then the social worker or care team member follows up as needed. Clinic staff use an app to access end-of-life care forms, record discussions, and plan care. A report from the app can be printed and uploaded to the patient’s health records.
The project team is working with the clinics to:
- Decide on the best ways to make the program part of regular care, such as how to schedule discussions and log them in patients’ health records
- Train clinic staff, such as social workers and kidney doctors, on how to use the program
- Provide monthly coaching sessions and ongoing support for social workers and nurse case managers
The project team is also working with the three dialysis organizations to include the HIGHway program in their policies and training programs.
What is the expected impact of this project?
The project is expanding the use of the ACP program to clinics across the United States. The project evaluation will confirm that the program is working as intended to promote end-of-life care discussions.
About 2,000 patients getting in-clinic dialysis and 250 patients getting home dialysis will receive the ACP program through this project. The project will also set the stage for future rollout to clinics that are part of the three dialysis organizations. These organizations include 75 percent of the dialysis clinics in the United States and serve 80 percent of patients on dialysis.
More about this implementation project:
Stakeholders Involved in This Project
To document implementation:
To assess healthcare and health outcomes:
Related Journal Citations
Initial PCORI-Funded Research Study
This implementation project focuses on putting findings into practice from this completed PCORI-funded research study: Effect of End-of-Life Care Planning Discussions on Hospice Use among Patients Receiving Dialysis for Kidney Failure