The absence in the US of supportive (palliative) care for patients with kidney disease is a major deficit in US kidney care.[i] Patients older than 75 years are the fastest growing segment of the dialysis population and if frail or sick with multiple comorbid conditions, these patients may not experience a survival benefit from dialysis.[ii] The lack of a comprehensive medical management without dialysis pathway—an alternative to starting dialysis for these patients—available in other countries, compounds the problem. End-of-life care for US patients is more aggressive and scores lower on end-of-life care quality metrics than the end-of-life care for patients with other serious illnesses.[iii] [iv] [v] Most ESRD patients die in the hospital and often after intensive procedures including mechanical ventilation, feeding tube placement, and cardiopulmonary resuscitation.[vi] Families of deceased dialysis patients rate the quality of their loved ones’ end-of-life care worse than families of those with cancer and other chronic conditions.5
Development of the Change Package and Strategy (Jan 2017 – Oct 2018)
During Phase One (ending October 2018), the project developed a change package with 14 evidence-based best practice recommendations designed to bring about improvement in supportive care delivery for patients with kidney disease. Working with a Technical Expert Panel, the ideal care system for seriously ill patients with kidney disease was defined. In this ideal patient-centered system, patient preferences, goals, and values are elicited and respected, patients receive treatment consonant with their goals, and patients and families receive the support, resources, and assistance to help them prepare for end of life care. Phase One was led by Quality Insights and funded by the Gordon and Betty Moore Foundation.
Figure1: Pathways Project Change Package Diagram
Even for providers who have access to the change package, the step from knowing what to do to knowing how to do it can be daunting. During Phase Two, providers and organizations enrolled in the Collaborative will be given the tools, training, and resources to help them make the leap from “what” to “how.”