Advocacy

RATIONALE:
Payors, nephrology and palliative care clinicians and social workers, dialysis organizations, fellowship programs

TARGET CHANGE AGENTS:
Seriously Seriously ill patients constitute 20% of kidney disease population, with different prognosis and needs than those who are not seriously ill. They need focused supportive care aligned with their values, preferences, and goals to improve their QoL.

RATIONALE:
Payors, nephrology and palliative care clinicians and social workers, dialysis organizations, fellowship programs

TARGET CHANGE AGENTS:
Research highlights the diversity of values of patients with CKD and lack of preparedness of nephrology clinicians to elicit patients’ values, preferences, and goals. To provide patient-centered care, patients’ values need to be systematically elicited, documented, and accessible across health care settings so patients’ wishes can be known and respected.

RATIONALE:
Payors, nephrology and palliative care clinicians and social workers, fellowship programs, patient advocacy groups

TARGET CHANGE AGENTS:
Accumulating evidence indicates that patients with CKD with ≥2 of the following may not live longer with dialysis than without it: age ≥75 y, multiple comorbidities, frailty, functional impairment, cognitive impairment, “no” response to Surprise Question.

RATIONALE:
Payors, nephrology and palliative care clinicians, fellowship programs, patient advocacy groups

TARGET CHANGE AGENTS:
Multiple studies show that attention to CKD symptoms improves patient QoL, but nephrology clinicians are largely unaware of patients’ troublesome symptoms. Systematic pain and symptom assessment need to be implemented with validated tools such as ESAS-R and iPOS-R. Algorithms for treating symptoms need to be widely available.

RATIONALE:
Nephrology and palliative care specialty societies, social worker organizations, ACGME, nephrology fellowship programs, academic medical centers, certifying examination boards

TARGET CHANGE AGENTS:
Patients with CKD have significant unmet supportive care needs, and failure to address their needs negatively impacts their QoL and that of their families.

RATIONALE:
Payors, ESRD QIP, hospices

TARGET CHANGE AGENTS:
The CKD population is heterogeneous. Reimbursement strategies and regulations need to take account of patient diversity.  Research shows that terminally ill patients enrolled in hospice receive the best end-of-life care. Seriously ill patients undergoing dialysis prioritize and evaluate quality care differently than what the ESRD QIP measures. Current financial incentives promote disease-oriented care for patients with stage 5 CKD, such that most begin dialysis without realizing they had a choice.