Shared Life Experience
A pilot program at Fresenius Kidney Care centers was designed to help clinicians, caregivers, fellow patients, and family members cope with the death of patients. The goal was to explore tangible ways to deal with unresolved grief and to find language for sharing patient information that was compliant with the Health Insurance Portability and Accountability Act of 1996 (HIPAA). By developing templates for sympathy cards and memorial services, project leaders took the first step in helping Fresenius Kidney Care clinicians and the larger community acknowledge loss and celebrate the lives of patients who have died.
The goal of chronic dialysis is to provide lifesaving treatment to patients with end stage renal disease (ESRD). Current dialysis quality and safety standards and the Centers for Medicare and Medicaid Services (CMS) Conditions for Coverage uphold goals of care focused on rehabilitation, dialysis adequacy, and life-sustaining treatment. In the early decades of dialysis, the patient population was younger and, on average, healthier. Today, an older, frail dialysis population with multiple comorbidities requires reevaluation to shift toward a treatment paradigm that supports patient-centered goals, values, and quality of life.
In 2016, the Clinical Innovation Initiatives (CII) team launched the Patient-Centered Comfort Care (PCC) pilot in 20 Fresenius Kidney Care centers. The genesis of the project was a stakeholder analysis, literature review, and examination of the current state of palliative care and advance care planning within Fresenius Medical Care North America (FMCNA). Internal review indicated that palliative care services were often handled at the Fresenius Kidney Care center level and that there was no uniform model for offering such services across Fresenius Kidney Care. The renal community, including physicians, academic leaders, and network administrators, articulated that these services were desired by patients, but that an effective dialysis clinic model did not exist at the time for providing palliative and end of life care and services.
CHALLENGE
The FMCNA medical leadership challenged the CII team to design and test a clinical care model to further advance competence in end of life and supportive care and shared decision making. In response, the team developed and implemented a six-month pilot to learn and share insights with project sponsors. The project focused on introducing a suite of services concerning patient-centered supportive care that included eliciting the patient's values and wishes. Based on the patient's expressed perspective, clinical staff offered guidance, support, and interventions in an effort to minimize crises such as emergency room visits and hospitalization. Among the many insights gleaned from this project was the need to help Fresenius Kidney Care caregivers cope with loss when patients die.
A dialysis shift is often a community that grieves and needs closure when a patient passes away. Although Fresenius Kidney Care social workers routinely provide staff support and counseling after a death, clinicians noted that there is often unresolved grief. Because of HIPAA, dialysis team members are unable to discuss the health status of a patient with fellow patients without the patient's permission. Work is needed to help clinic staff communicate effectively and in a HIPAA compliant manner with patients about life events, such as hospitalizations and death, and to help caregivers, patients, and family members honor memories, process grief, and provide closure.
Based on this project experience, the CII team proposed a "phase two" innovations pilot, Shared Life Experience (SLE). The pilot objectives focused on addressing unresolved grief in tangible ways and exploring permissible language to acknowledge patient death with other patients. It was suggested that these efforts may serve to improve patient and family experience and meet the needs of clinic staff who express stress and burnout related to patient loss.
APPROACH
An SLE work group with diverse skills and points of view was established and served as "thinking partners" for the CII team. The group considered methods and resources for transitioning from the current process-driven policy/procedure approach for acknowledgment of patient death to a people-driven multidimensional one. This new approach would provide full support and meaningful recommendations aimed at helping staff and patients cope with loss. Project objectives were:
- Design and pilot consistent ways to acknowledge death using sympathy cards
- Design and pilot two or three models for celebrating memories as a community through memorial services
- Design and pilot a health status release form that could potentially improve communication, and establish acceptable language for providing information to the concerned patient community at the dialysis clinic during hospitalization or after a patient death
SYMPATHY CARDS
The team developed a variety of card layouts and message options, partnered with the FMCNA Marketing Department to create an easy ordering site via FMC4ME (FMCNA's internal website), developed a best practice for use, and then piloted the process with partner Fresenius Kidney Care centers.
MEMORIAL SERVICES
Many pilot clinics joined together to plan and hold a Celebration of Life (CoL) event in June 2017. The CII project team documented this process and created a CoL planning packet complete with meeting planners, timelines, templates, and photographs. This CoL toolkit was suggested to assist other clinics with conducting similar celebrations.
HEALTH STATUS RELEASE FORM
HIPAA and FMCNA privacy policy restricts sharing patient information in the dialysis clinic, which led to staff concerns. The pilot addressed some of these concerns in this segment of the project. The team was introduced to the Health Status Release (HSR) Form via ESRD Networks 4 and 12. They worked with the networks and the FMCNA Compliance team to review, edit, and approve the form for Fresenius Kidney Care pilot use. In addition, the existing procedure for disclosing protected health information of deceased patients was updated so the form could be tested in pilot. The team also drafted a HIPAA frequently asked questions (FAQ) document to provide guidance on the use of the HSR form for Fresenius Kidney Care center staff.
INSIGHTS AND LEARNINGS
The CII team collaborated with a diverse advisory committee that supported design thinking and promoted cross-team partnerships with internal and external stakeholders. The clinical and social work staff in the participating Fresenius Kidney Care centers were actively engaged in the process, allowing the CII team to observe and interact with them throughout the pilot duration. These associations created opportunities for insights.
The sympathy card project was very successful. The team received feedback that clinics liked the card selections and found the ordering process simple. Since launching the card-ordering site in April 2017, over 90 clinics across the country have independently found and ordered the cards on FMC4ME. The team is working with Clinical Services to plan for broad corporate rollout and support. Overall, it was determined that sympathy cards offer a tangible and meaningful way to express condolences to family members and caregivers.
The team's original intention was to design and pilot two or three models for Fresenius Kidney Care memorial services. However, observations made during the planning of the initial CoL service resulted in the creation of an official Planning Guide to assist other care teams as they plan and hold remembrance services. The experience led the team to conclude that CoL can positively impact providers, family members, caregivers, and patients by honoring loved ones' memories, processing grief, bringing closure, and promoting cross-functional collaboration. Staff members provided the following written feedback:
“We so seldom get to follow up with the families left behind. I think they appreciated that we remembered them and a tribute [sic] to their loved ones.”
—Clinic staff
“It was definitely the right thing to do, and we collaborated with the patients’ families, current patients, and each other.”
—Deborah B., Clinic Manager
“We honored our loved ones in a very nice way, and all those who came felt moved in some way.”
—Clinic staff
Prior to this pilot, the participating clinic staff did not communicate a patient's health status to other patients due to HIPAA and FMCNA privacy policy. The HSR form and FAQs were developed and implemented to encourage and support clinic staff with these discussions in a manner compliant with HIPAA and FMCNA privacy policy. FMCNA will continue to work through the complex issues of patient privacy and "empty chair" conversations in the dialysis facility community. The HSR form is in use in several pilot project clinics as of Q1 2018, and FMCNA Compliance officers are reviewing potential options for continued use. The CII team plans to continue to evaluate options and provide updates throughout 2018.
CONCLUSION
Due to the nature of clinical work, Fresenius Kidney Care staff members naturally develop relationships with patients. It is important that FMCNA supports caregivers by acknowledging the loss of those relationships. This project addressed unresolved grief in tangible ways and explored acceptable HIPAA-compliant language and processes for Fresenius Kidney Care clinicians to use to share patient information. These components provide an opportunity to address clinic staff stress and burnout related to patient loss, as well as positively impact patient and family experience. They allow all clinic staff to be involved in the discussions regarding a loss in the dialysis clinics, support patients and staff on this complex journey, and afford FMCNA an opportunity to continue to evolve as a caring and supportive health care provider. The components of this project have universal implications and flexibility to evolve in Fresenius Kidney Care centers. These are important first steps in addressing unresolved grief issues in the staff and patient communities.
Meet Our Expert
KAREN G. BUTLER, MSN, RN
Vice President, Clinical Innovation Initiatives, Fresenius Medical Care
An RN with over 25 years of clinical leadership in the renal care space, Karen Butler oversees FMCNA's clinical innovation and operational pilots throughout North America. She received her bachelor's degree in nursing from Pace University, and her master's in nursing informatics from American Sentinel University, and is a member of the FMCNA Nursing Advisory Board.
