Table 1.

Concepts extracted from literature search and provided to technical expert panel for building change package

Pearl That May Lead to a Change Concept
Pathway 1: conservative, nondialytic management
 Need hospice referral early; increase in symptoms in last 2 mo
  Patients receiving conservative, nondialytic management may live longer than a year and need to be treated with primary palliative care skills
 Geriatric syndromes (including frailty), old age, and high comorbidities predict poor prognosis with dialysis; may not be a survival benefit with dialysis
 Caregivers of patients receiving conservative, nondialytic management need psychosocial support for such patients to do well
 Quality of life and patient experience better for patients receiving conservative, nondialytic management than for patients receiving dialysis, but survival is shorter; patients willing to trade-off survival for better quality of life
 About 15% of patients choose conservative, nondialytic management; patients respond well to choice of conservative, nondialytic management when pathway is established and presented as “natural aging” or “holistic care”
 Erythropoietin-stimulating agents decrease fatigue of patients receiving conservative, nondialytic management
 Risk algorithms for patients with high 90-d mortality after starting dialysis can be used to inform decision about initiating dialysis
 A total of 93 patients over age 80 with 1‐ and 5‐yr survivals on dialysis comparable with the population of patients with kidney failure as a whole; need to examine reasons why
Pathway 2: supportive care throughout the continuum of care
 Need someone to “own” symptom assessment who knows how to treat them
 Summary of overall palliative care approach
 Referral to nephrologist/palliative care clinician before 3 mo allows time for consideration of all RRT options, including conservative, nondialytic management; preemptive transplant; and home dialysis
  Patients with CKD perceive end-of-life care practices of dialysis centers as falling short of their many needs; areas of unmet need include advance care planning, pain and symptom management, and psychosocial and spiritual support; need to “normalize” advance care planning discussions earlier in dialysis patient care
 Need a communication framework for dialysis decisions that identifies patients’ values and goals and results in treatments being aligned with them
 Frequent outpatient palliative-care clinic visits leads to fewer emergency-department visits and hospitalizations
 Conceptualize care in all three pathways as patient centered rather than disease oriented
 A need for all three pathways; patients and families do not understand palliative care and hospice
 Screen for depression early and often
 Sharing Patient's Illness Representations to Increase Trust (SPIRIT) is an effective advance care planning intervention to prepare caregivers for decisions and improve bereavement; caregivers have a limited understanding of patients’ values and goals
 My Kidneys, My Choice is a decision aid to help patients with kidney failure with shared decision making about dialysis options
 Patients want family members present and for nephrologists to be involved in the advance care planning discussions, and for their desire to participate to be determined before starting
 A registry of all patients with advanced CKD who were appropriate for supportive care helped to identify what supportive care practices were being provided to patients and how often
Pathway 3: dialysis withdrawal
 Tracking quality of life longitudinally can identify patients who are reconsidering whether dialysis was still worth the life it was providing
 Need for improved detection of patients who are at high risk of dying; those with loss of independence; clinical deterioration; loss of function; inability to engage in meaningful, enjoyable activities; and those “dying on dialysis” using the surprise question, the integrated prognostic model, or the Renal Epidemiology Information Network prognostic score so that palliative care interventions, including advance care planning, can be offered to them
 Develop advance care plan for patients at high risk of dying, including Physician or Provider Order for Life-Sustaining Treatment form, which has been shown to increase out-of-hospital death and hospice admission
 Ethics committee deliberation on 111 patients who were being considered for withdrawal over an 8-yr period; patients were identified by new, severe, comorbid conditions, such as a stroke, intractable pain, or hemodynamic instability on dialysis
 Nine advance care planning interventions have been studied in patients with kidney failure; one demonstrated improved patient and family well being and anxiety; others noted the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis therapy separately from “aggressive” life-sustaining treatments (e.g., ventilation)