Grant: Operating Grant

Palliative care has historically focused on advanced cancer. However, people with advanced non-cancer conditions also need excellent end of life care. We have shown that patients dying with advanced chronic kidney disease (CKD) have extensive end-of-life care considerations. They have exceedingly high mortality rates of 20% - 25%/ year and typically experience substantial physical, emotional and spiritual suffering and high levels of disability for many months or years before death. These patients rarely access palliative care services and the quality of their dying experience is poor. This study aims to characterize the functional decline of patients dying with stage 5 CKD and evaluate and refine prognostic strategies to identify those with shortened survival within a novel palliative care program implemented recently within the Northern Alberta Renal Program (NARP). Specifically, we will 1) characterize the functional decline in the last year of life. This will aid timely and effective planning of palliative and supportive care services for patients with advanced CKD and help better determine the optimal time to shift to a palliative approach to care; 2) validate the prognostic model that has been integrated programmatically as part of the renal palliative care program within NARP and further develop this model with the overall aim of establishing a clinical and research standard to identify patients with the shortest survival. The ability to prognosticate survival is critical to provide effective and timely palliative care and will permit appropriate alignment of palliative care resources to the needs of CKD patients. The results from this study will help improve referral, clinical practice, and overall access to palliative care services for patients with advanced CKD.