Results Summary

What was the research about?

Many people with kidney failure receive dialysis to remove toxins from the blood because the kidneys can no longer do so. But they may still be at high risk of dying. Talking about end-of-life care options with a doctor can help patients with kidney failure get the care they want in their last years. For example, patients often want to focus on quality of life or dying at home. For these patients, doctors may suggest hospice care. Hospice care focuses on keeping the best possible quality of life near the end of life. But only one in four dying patients on dialysis gets hospice care.

In this study, the research team tested a program to train kidney doctors and social workers in how to discuss and plan for end-of-life care with patients on dialysis and their families. Social workers in the program also took an eight-hour training on topics such as legal and cultural aspects of end-of-life care. Each patient and his or her family members met with a social worker and a kidney doctor for one hour to plan end-of-life care. Then the social worker followed up with the patient as needed.

The research team looked to see if more patients on dialysis used hospice after talking with their doctor about their goals for end-of-life care. The team also compared patients’ quality of life before and after the program.

What were the results?

Of the patients who died during the study,

  • 52 percent died in a hospital
  • 29 percent died at home
  • 19 percent died in a nursing home

Of these patients, 48 percent stopped dialysis before death and 43 percent used hospice. The percentage of patients who used hospice at study clinics was the same before and after the program.

Of all patients in the study,

  • 75 percent had a healthcare proxy, or a person to make decisions on the patient’s behalf if needed
  • 63 percent had doctors’ orders that stated their wishes for life-sustaining treatment
  • 22 percent had a living will

After the program, patients’ depression, pain, dialysis symptoms, and physical and emotional health didn’t change.

Who was in the study?

The study included 125 patients with about six months to live who got care at 18 dialysis clinics in Massachusetts and New Mexico. Of these, 46 percent were white, 14 percent were black, 12 percent were American Indian, and 28 percent were other or unknown races. The average age was 69, and 51 percent were men.

What did the research team do?

The research team measured hospice use for all patients who got care at study clinics between 2010 and 2017. Then, the team compared results for 125 patients before and after the program to see how many used hospice. The team also followed patients who got the program to see

  • How many carried out end-of-life planning tasks
  • Where patients died
  • Their quality of life

Patients, family members, and social workers helped design and recruit for the study.

What were the limits of the study?

The study didn’t compare patients who were in the program with those who weren’t during the same period. Thus, it isn’t possible to know if the program caused the results.

Future research could further explore programs that promote end-of-life planning. Such research could compare patients who get this type of program to patients who don’t. Future studies could also look at how to best fit the program into clinic routine.

How can people use the results?

Researchers can use these results to advance research on ways to prepare patients on dialysis, families, social workers, and clinicians to discuss end-of-life care.

Final Research Report

View this project's final research report.

Implementation

Related PCORI Dissemination and Implementation Project

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented, and the researchers made changes or provided responses. The comments and responses included the following:

  • Reviewers asked for more information on the researchers’ decisions about study design, as some of those may have contributed to the lack of statistical significance in the main results. The researchers acknowledged that some decisions about study design may have affected their ability to find significant results. For instance, their assumptions about the number of deaths in the study population and the number of referrals to hospice care were not met. This meant that there was not sufficient power to detect the expected difference in hospice rates between study and non-study-intervention periods.
  • Reviewers noted that participants’ patient health questionnaire depressive scores were notably high and suggested the report should address this. The researchers agreed that the personal health questionnaire depressive scores were high but said that reflects the weakness of the measure since the questionnaire assesses symptoms of depression and not its etiology. As specialists who have worked with this chronically ill population extensively, the researchers said they would hesitate to describe the patients in the study as depressed.

Conflict of Interest Disclosures

Project Information

Lewis Mitchel Cohen, MD
Mark Unruh, MD
Baystate Medical Center
$2,083,373
10.25302/05.2020.CD.13047360
Shared Decision Making and Renal Supportive Care

Key Dates

September 2013
January 2019
2013
2018

Study Registration Information

Tags

Has Results
Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 29, 2024