The 2018 Centers for Medicare & Medicaid Services (CMS) Quality Conference brought together CMS program leaders, contractors, federal partners, clinicians, thought leaders, caregivers and patients to exchange innovation strategies, learn best practices and spread solutions for health care quality improvement.
At the heart of the End Stage Renal Disease (ESRD) meeting track, kidney disease patient subject matter experts (SMEs) advanced the patient perspective on topics that mattered to them. They told the ESRD National Coordinating Center (NCC) that broad conversations needed to be held and resources developed about managing grief and loss following the death of fellow patients. It was game-changing for patients’ voices to direct national efforts on a topic not previously addressed at this level.
After the conference, the National Patient and Family Engagement (NPFE) Learning and Action Network (LAN) created a patient-selected topic on grief and loss. It focused on creating resources to address patient concerns at the national level. The goal was to improve the availability of resources permitting and encouraging communication about sensitive topics such as grief and death.
The ESRD NCC collaborated with the ESRD Networks to uncover existing materials and best or promising practices already in use related to the topic. ESRD Networks 4 and 12 shared a Health Status Release Form used in dialysis facilities in their service areas. The form provides an opportunity for patients to approve the release of their health information to fellow dialysis patients in the event of their death or transfer from in-center treatments to a home or transplant modality.
Patient SMEs reviewed and edited the previously piloted form, adding a section called Frequently Asked Questions about Using the Form. This was to help bridge the possible communication gap between patients and facility staff about patients’ wishes. The ESRD NCC asked patients to share the draft materials with their facility and the kidney community.
One patient SME shared that when a patient passes away, his or her dialysis clinic provides a sympathy card, allows patients to sign it and then delivers it to the family of the deceased. Affinity Group members recommended creating a downloadable sympathy card and small Celebration of Life poster enabling the patient obituary or picture to be inserted into the poster and shared during dialysis center lobby days. Another SME recommended that facilities celebrate patients who move from in-center to home dialysis, or who receive a transplant. Patients shared draft materials with their centers.
Following is some feedback from patients about their experience in sharing the materials:
- I shared the materials at my clinic and patients were thrilled with the posters celebrating patients who transferred to home dialysis or received a transplant. It’s terrifying when a patient disappears.
- I shared the health status release form with the leaders of my dialysis center. They like it. The social worker is reviewing it to see how it can be used in my clinic.
- I have shared the resources with the staff of my dialysis unit. Their reaction was, “It’s a long time coming for this type of resource. When can we begin using the information?”
In the first 45 days after posting these materials — as well as other patient-created resources — to the ESRD NCC website, there were more than 450 pageviews on the NPFE-LAN webpage. SMEs have reached out to the NCC for additional materials to support their kidney community outreach efforts. In 2018, the ESRD NCC provided more than 1,000 copies of materials to patient game changers advocating for a better patient experience.
The 2019 NCC NPFE-LAN will kick off at the 2019 CMS Quality Conference. The LAN will continue to focus on important issues affecting patients and providers. The pacing event format offers a space for patients’ voices to be heard and provides a path for action. The LAN will focus on approaching education and support from the patient perspective, while working closely with providers and stakeholders to implement the patient-created resources to spread and impact the quality of life for all patients with kidney disease.