Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons With Kidney Disease on Dialysis

OBJECTIVES Primary Objective: The HIGHWay project trains dialysis center teams to conduct ACP conversations with patients with kidney failure. Emphasis is on training and supporting the dialysis center social worker to be the team leader for ACP, in collaboration with the nephrologist and other clinicians. Aims: 1. Implement the HIGHway intervention with a project team consisting of a social worker, nephrologist and nurse at 50 clinics, and train them to conduct ACP using best practices. 2. Assist social workers/nurses to implement ACP into their regular workflow with personal coaching, webinars and multimedia teaching materials. 3. Use a dedicated web-based application software to guide social workers/nurses on the ACP process of patients in dialysis centers and provide resources for holding ACP conversations. 4. Provide ongoing coaching through monthly teleconferences to bolster social worker/nurse skills through case discussion and mentoring. 5. Develop a long-term implementation and scale-up plan for training social workers/nurses in ACP in different dialysis centers in conjunction with the Coalition for Supportive Care of Kidney Patients, Forum of ESRD Networks, the National Council of Nephrology Social Workers, the National Renal Administrators Association, and dialysis organizations. RELEVANT BACKGROUND Patient-centered care problem addressed: Patients on dialysis want to discuss their preferences for treatment at the end of life, but few do so, and most nephrologists are reluctant or feel unprepared to lead such discussions. Effective tools are critically needed to elicit such preferences since over 50,000 Americans die of kidney disease annually, more than from breast or prostate cancer. For dialysis patients with significant co-morbidities, risk of death within a year of starting dialysis is stark. Of those who had 4 or more comorbidities, 26% died within 30 days of dialysis initiation, and 60% died within a year. These patients have higher - and often unwanted - intensity of care at end of life; in a four-year study of the United States Renal Data System, 49% of elderly long-term hemodialysis (HD) patients spent time in an intensive care unit in their final month of life, compared with 24% of cancer patients. Meaningful end-of-life conversations can change these outcomes and are associated with increased hospice referral, less aggressive and expensive medical treatment, and higher levels of family satisfaction. Yet less than 10% of end-stage renal disease (ESRD) patients report having a conversation about any end-of-life issues with their nephrologist in the previous year, although 90% said such conversations were important. Few patients with ESRD engage in ACP, and the vast majority lack a written advance directive or surrogate decision maker, leaving them unprepared to provide guidance in medical decisions in a crisis. A prior study funded by PCORI developed and tested an intervention to enable more advance care planning to take place in dialysis centers. The Shared Decision Making - Renal Supportive Care (SDM-RSC) study tested a multi-modal patient-centered intervention to improve advance care planning for dialysis patients. Through qualitative interviews with advisory boards comprised of patients and stakeholders, SDM-RSC investigators designed an intervention that focused on goals of care conversations between patients and family members with the nephrologist and social worker. The SDM-RSC 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 directives and medical orders (Medical Orders for Life-Sustaining Treatment \[MOLST\]/Physician Orders for Life-Sustaining Treatment \[POLST\]) associated with improved patient-level end-of-life (EOL) outcomes. Among study participants, the advance directive completion rate and understanding of advance directives were substantially higher than in usual care; 75% of participants named and documented a healthcare proxy and 63% had medical orders (MOLST or POLST) (in comparison to 49% with advance directives and 3% with medical orders in usual care). The average duration time for an ACP conversation was about 45 minutes. Overall clinic-level hospice usage using retrospective data did not vary significantly between the pre- and post-intervention 6-month periods with an observed average rate of 25% which is close to the 2015 national average of 26% among all ESRD Medicare decedents. However, among deceased study participants who engaged in a Shared Decision Making and Renal Supportive Care (SDMRSC) meeting, 48% voluntarily withdrew from dialysis prior to death and 39% received hospice services (compared to the overall rate in these dialysis centers of 24.8%). There were high levels of family satisfaction (FAMCARE results) and no adverse intervention effects on patients or surrogates on measures of depression and health-related quality of life. The stakeholder advisory council and the respondents on post-intervention interviews recommended the following: a) streamlining and focusing the social worker training; b) offering the advance care planning conversation to all dialysis patients, not just those who were seriously ill, c) broadening the population to include home dialysis patients; and d) offering a telehealth option for conducting the discussions. The current study builds on the SDM-RSC results to implement the revised intervention in a broader population with a larger number of participating dialysis centers.