Why This Project Is Needed
More than 130,000 patients with kidney failure start dialysis annually. Older patients constitute the fastest growing segment. Those who are frail or have other serious medical conditions may not live any longer with dialysis than without it. United States health care policy has created a powerful “dialysis default,” where virtually all patients with kidney failure who do not receive a transplant are treated with a standard dialysis regimen in a dialysis center regardless of whether it will help them live any longer or better. About 20 percent of patients regret the decision to start dialysis, yet non-dialysis alternatives are rarely offered to them. Most report they were unaware they had a choice about kidney failure treatment.
Many older patients with kidney disease value independence over staying alive longer. Not aware of their patients’ values, most nephrologists do not offer alternatives to standard dialysis such as active medical management without dialysis (AMMWD), a time-limited trial of dialysis or waiting to decide until a later date. Similarly, these options, or alternative treatment plans (ATPs), are rarely included in kidney disease education sessions for patients funded by Medicare.
Other countries—notably Australia, Canada and the United Kingdom—have found that about 15 percent of older patients with kidney failure prefer AMMWD. They have created programs within their health care systems that integrate primary palliative care into care for patients who choose an ATP. These programs report excellent outcomes in terms of patient quality of life, care according to patients’ wishes and patient survival on average for over a year. They have shown it is possible to avoid complications at the end of life such as patients who wanted AMMWD being started on dialysis because their symptoms were not well-managed. These programs provide an extra layer of support and prepare patients and families for when the patient’s kidney failure worsens.
Objectives of Research Project
To improve health care systems’ ability to provide patient-centered care to patients with kidney disease, this project compares two strategies for interrupting the powerful dialysis default, broadening patient treatment choices and involving them in shared decision making. The aim is to determine which health system level intervention improves patient access to ATP, satisfaction and confidence with their kidney failure treatment decision. An additional aim is to describe the experience of patients and caregivers throughout the course of ATP, especially at the end of life.
Approach 1–Educate and Engage: Nephrology practices implement a bundle in which they will encourage their patients to:
- Participate in a kidney disease education program providing a balanced presentation of all options, including ATPs
- Use evidence-based patient decision aids that include ATPs
- Engage in shared decision making with staff who have been trained in communication skills and best practices
Approach 2–A Kidney Supportive Care Program: In addition to the approach 1 bundle of education and engagement activities, nephrology practices offer a systematic program integrating primary palliative care to support patients and their families who choose any ATP. The program closely follows patients and their families on ATP with care coordination, symptom management, advance care planning and psychosocial support to supplement usual care from their nephrologist.
Twenty-five nephrology practice sites will be trained in approaches 1 and 2. All sites start by offering the education and engagement of approach 1. Over three years, eight to nine sites at a time will then add approach 2, a kidney supportive care program. Practices will be randomly assigned to the timing for starting approach 2, but all will eventually provide it. The study team is prepared to lose four sites from the project, leaving 21 sites for final data analysis. About 2,800 patients whose kidney function declines to the point it is necessary to decide about kidney failure treatment will be eligible for the study. Of these, the team expects 140 patients in approach 1 and 420 in approach 2 to choose an ATP.
The two primary outcomes are (1) the proportion of patients who choose an ATP and (2) patient satisfaction and confidence in their kidney treatment failure decision. For a subset of patients, the team will also measure patients’ experiences of the decision-making process and their quality of life on ATP.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.