Project Summary

PCORI funds implementation projects to increase awareness and promote the use of PCORI-funded research findings to improve healthcare practices and health outcomes. This project focuses on implementing findings from the following completed PCORI-funded research project: Effect of End-of-Life Care Planning Discussions on Hospice Use among Patients Receiving Dialysis for Kidney Failure.

1. What were the results from the original PCORI-funded research study?

With input from patients and stakeholder boards, the Shared Decision Making-Renal Supportive Care (SDM-RSC) study tested a multimodal patient-centered intervention to improve advance care planning (ACP) for dialysis patients in New Mexico and Massachusetts. Among study participants, the advance directive completion rate, understanding of advance directives, and referral to hospice were substantially higher compared with usual care. We also observed high levels of family satisfaction.

2. Why is this research finding important?

The SDM-RSC intervention overcame barriers to ACP with dialysis patients, and systematically elicited patient preferences so that preference-concordant end-of-life care (EOLC) could be provided. In prior studies of dialysis patients, their EOLC was characterized by unwanted high intensity, with frequent intensive care unit admissions and the use of invasive treatments, such as cardiopulmonary resuscitation, with a low likelihood of success. 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. While 90 percent of ESRD patients express that conversations about any end-of-life issues with their nephrologist are important, less than 10 percent report having such conversations. The SDM-RSC intervention targets deficiencies in prognosis estimation, communication, and EOLC planning. Successfully scaling the findings of the SDM-RSC intervention will matter to patients and families, because this will provide them with the high-quality, goal-concordant care they desire.

3. What is the goal of this project?

Our primary objective is to scale up the original project to over 3,500 patients in 50 dialysis clinics. We will achieve this objective by training 50 project teams (each team consists of a nephrologist, social worker, and nurse) in how to best conduct ACP and end-of-life conversations. We will also provide mentorship for incorporating ACP quality measures, goals-of-care (GOC) conversations, and EOLC planning into ongoing quality improvement activities. Finally, we will provide organizational leaders with strategies to make ACP material accessible and actionable in the electronic health record. Other healthcare team members, including nephrologists, nurse practitioners, nurses, and technicians, will also be trained to introduce and support ACP and to have an effective hand-off to a social worker.

4. What is the project team doing?

We propose a multimodal strategy that applies both top-down and bottom-up approaches. We will work with leadership of participating organizations to adopt feasible and actionable procedures for implementing ACP. Using training materials from the prior project, we will train project teams to make ACP a usual part of care for all patients. We will adapt the prior training to be delivered remotely, accommodate staff turnover, and provide an option for holding ACP discussions via telehealth. We will deliver training and ongoing mentoring to approximately 50 project teams, split into two cohorts. Each cohort will have six hours of web conference training for social workers, and shorter orientation sessions for nephrologists and nurses. We will also provide nine months of follow-up in small groups and mentoring by a project ACP coach to address overcoming challenges. The clinical settings will be freestanding outpatient maintenance hemodialysis clinics located in diverse rural and urban locations. The usual schedule allows for three treatment shifts per day, with an average of 70 patients per facility. Clinics typically have an additional 5 to 8 percent of patients conducting their dialysis treatments at home. Increasing home dialysis is a goal of a new US Department of Health and Human Services initiative. Reaching these home dialysis patients is an important part of the proposed implementation. Each clinic has a treatment team consisting of a nephrologist, nurses, patient care technicians, dietitians, and social workers. The implementation design will focus on training the clinic social workers to be the project team leader in conducting ACP conversations and hospice care coordination, while coordinating with the team. In the original study, patient outcomes included fewer hospitalizations; more decisions about goals prior to death, which result in better life closure; and higher levels of patient and family satisfaction. Provider outcomes included more confidence in conducting ACP conversations, and an enhanced sense of interdisciplinary teamwork. As this project scales to more dialysis clinics, we expect to continue this impact, with an increase in provider skills in, and a more systematic approach to, conducting ACP discussions, resulting in a better understanding of patients’ values and preferences for care.

5. How is the team evaluating this project?

The project’s success hinges on whether adoption and effective use of the SDM-RSC approach occurs in center and home dialysis settings. We will use multiple tools to assess the acceptability and feasibility of this implementation, including the Workshop Evaluation Form, the adapted information technology innovation survey, the feasibility of implementation questionnaire, the RSC-ACP Implementation Process checklist, and the Scott innovation scale. We will evaluate sustainability based on whether participants express an intent to sustain. We will evaluate patient and provider outcomes with the RSC-ACP documentation and GOC conversation checklist. Moreover, we will assess quality, comprehensiveness, and content of GOC conversations via audiotaping selected conversations, and measure the significance of the RSC ACP intervention using qualitative interviews with a purposive sample of patients. We will mail all patients a survey with patient-reported outcomes on their assessment of the ACP conversation. We anticipate patients find the ACP conversations helpful and will be prepared to complete ACP documents and have discussions with their families and providers. For providers, the impact will be improved knowledge of ACP to provide goal-concordant care conversations, and policy changes within provider organizations to facilitate more patient-centered care.

6. How is the team involving patients and others in ensuring the findings reach people who can use them?

We are partnering with multiple organizations, including the American Association of Kidney Patients, the Coalition for Supportive Care of Kidney Patients, and the Social Work Hospice and Palliative Care Network, to solicit patient and provider input. At least four patients or caregivers will become members of the National Stakeholder Advisory group that will advise the project team. The organizations involved in the stakeholder group will publicize the project products and results to increase their use and build support for related policy change.

7. How will this project help ensure future uptake and use of findings from patient-centered outcomes research?

By increasing patient satisfaction, better preparing social workers to conduct ACP conversations, and conserving resources by reducing the costs of unwanted expensive hospitalizations, we project that this implementation project will be regarded as a dramatic improvement in dialysis patient care and readily sustained by the participating large dialysis organizations. With acceptance by dialysis organizations that provide care to over two-thirds of dialysis patients in the country, we anticipate that use by the remaining dialysis providers in this country will follow.

Project Information

Dale Lupu, PhD, MPH
The George Washington University School of Nursing
$1,161,013

Key Dates

March 2021
June 2023
2021

Initial PCORI-funded Research Study

This implementation project focuses on putting findings into practice from this completed PCORI-funded research study: Effect of End-of-Life Care Planning Discussions on Hospice Use among Patients Receiving Dialysis for Kidney Failure

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Last updated: January 16, 2022