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Published in: BMC Palliative Care 1/2022

Open Access 01-12-2022 | Care | Study protocol

Implementing Advance Care Planning for dialysis patients: HIGHway project

Authors: Giselle Rodriguez de Sosa, Amanda Nicklas, Mae Thamer, Elizabeth Anderson, Naveena Reddy, JoAnn Stevelos, Michael J. Germain, Mark L. Unruh, Dale E. Lupu

Published in: BMC Palliative Care | Issue 1/2022

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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.
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Metadata
Title
Implementing Advance Care Planning for dialysis patients: HIGHway project
Authors
Giselle Rodriguez de Sosa
Amanda Nicklas
Mae Thamer
Elizabeth Anderson
Naveena Reddy
JoAnn Stevelos
Michael J. Germain
Mark L. Unruh
Dale E. Lupu
Publication date
01-12-2022
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2022
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-022-01011-5

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