Implementing Advance Care Planning for dialysis patients: HIGHway project

Abstract

Background Patients undergoing hemodialysis have a high mortality rate and yet underutilize palliative care and hospice resources. The Shared Decision Making-Renal Supportive Care (SDM-RSC) intervention focused on goals of care conversations between patients and family members with the nephrologist and social worker. The intervention targeted deficiencies in communication, estimating prognosis, and transition planning for seriously ill dialysis patients. The intervention showed capacity to increase substantially completion of advance care directives. The HIGHway Project, adapted from the previous SDM-RSC, scale up training social workers or nurses in dialysis center in advance care planning (ACP), and then support them for a subsequent 9-month action period, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. Methods We will train between 50–60 dialysis teams, led by social workers or nurses, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. This implementation project uses the Knowledge to Action (KTA) Framework within the Consolidated Framework for Implementation Research (CFIR) to increase adoption and sustainability in the participating dialysis centers. This includes a curriculum about how to hold ACP conversation and coaching with monthly teleconferences through case discussion and mentoring. An application software will guide on the process and provide resources for holding ACP conversations. Our project will focus on implementation outcomes. Success will be determined by adoption and effective use of the ACP approach. Patient and provider outcomes will be measured by the number of ACP conversations held and documented; the quality and fidelity of ACP conversations to the HIGHway process as taught during education sessions; impact on knowledge and skills; content, relevance, and significance of ACP intervention for patients, and Supportive Kidney Care (SKC) App usage. Currently HIGHway is in the recruitment stage. Discussion Effective changes to advance care planning processes in dialysis centers can lead to institutional policy and protocol changes, providing a model for patients receiving dialysis treatment in the US. The result will be a widespread improvement in advance care planning, thereby remedying one of the current barriers to patient-centered, goal-concordant care for dialysis patients. Trial registration The George Washington University Protocol Record NCR213481, Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons with Kidney Disease on Dialysis, is registered in ClinicalTrials.gov Identifier: NCT05324878 on April 11th, 2022.

Pathways Project Pragmatic Lessons Learned: Integrating Supportive Care Best Practices into Real-World Kidney Care

“…Development of targeted educational programs for nephrology fellows, renal nurses, and renal social workers bolsters opportunities for renal professionals to enhance their communication skills regarding ACP, AMMWD, and other KSC topics. 56 – 59…”

Advance care planning for patients with end-stage kidney disease on dialysis: narrative review of the current evidence, and future considerations

“…Implementation strategies have been explored in recent advance care planning studies [ 39 , 54 ] but further integration of these principles into clinical trials are needed to bridge the gap between evidence and clinical practice: the ‘know-do’ gap [ 57 ]. A protocol for a study using implementation theory to demonstrate scalability of a discussion-led advance care planning intervention across multiple sites has been published, using implementation and evaluation-based outcomes to assess success for both patients and providers [ 66 ]. The 15-year experience of a kidney care network in Canada describing efforts to integrate palliative care principles into routine care for patients with CKD stage 4–5 could be used as an exemplar for other centres and to highlight the ongoing challenges [ 67 ].…”