Results Summary

What was the research about?

When patients are seriously ill, discussions between patients and their doctors can make it more likely that patients get the care they want. Because family members may help make decisions about patients’ care, they should also understand what patients want.

In this study, patients with serious illnesses filled out a form about their goals for care and how they’d like to discuss those goals. The research team compared communication and care for two groups. In one group, patients, doctors, and families saw information from the form before a visit. The other group didn’t see the results.

What were the results?

Compared with the group that didn’t see the results of the form, patients in the group that did

  • Were more likely to talk with their doctors about goals for care
  • Reported better communication with their doctors
  • Were more likely to report receiving care in line with their goals, as long as those goals didn’t change later in the study

There were no differences in patients’ depression and anxiety symptoms or the rate of referrals doctors provided to care that focuses on relieving suffering.

Who was in the study?

The study included 537 patients with serious illnesses and 132 doctors from clinics in Washington State. Of these patients, 79 percent were white, 12 percent were black, 3 percent were Asian, and 6 percent were of other races or mixed race. Also, 1 percent were Hispanic. The average age was 74 and 52 percent were men. Patients in the study had cancer, lung disease, or other long-term or serious health problems. Doctors included primary care doctors, specialists, and nurse practitioners.

An advisory board of patients with serious illnesses, family members, doctors, and community members gave feedback on the study materials.

What did the research team do?

The research team showed patients a video about how to fill out the form. The form asked about patients’ goals for care for a serious illness. The team assigned doctors by chance to one of two groups. In the first group, patients, families, and doctors received information from the patient form before a clinic visit. In the other group, they didn’t receive this information. Doctors reported to the research team whether any discussion about care goals took place during the office visit.

Patients in both groups filled out a follow-up survey two weeks, three months, and six months after the office visit. The surveys asked patients about

  • Whether they had talked about their care goals with their doctor
  • The quality of communication with their doctor
  • Whether their care matched their goals for care
  • Their depression and anxiety symptoms

What were the limits of the study?

The study took place in a single state. Results may be different in other places. Patients and doctors willing to be in this study may be more willing to talk about goals for care than other patients and doctors. Results might be different for patients and doctors who aren’t comfortable talking about goals for care. Only 22 percent of patients’ families were in the study. The study relied on patients to report whether their care matched their goals; patients may have found this question hard to answer.

How can people use the results?

Patients with serious illnesses and their doctors may choose to use a form to help them talk about patients’ goals for care.

Final Research Report

View this project's final research report.

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Study Protocol

View this project's study protocol.

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. Those comments and responses included the following:

  • The reviewers questioned whether the study was really an efficacy study since the outcomes were about process of care rather than clinical change. The researchers responded that the study measured the efficacy of the intervention on changes in goals-of-care discussions as the primary outcome, a process outcome.
  • The reviewers asked researchers for additional rationale for including anxiety and depression symptoms as study outcomes. The researchers responded that interventions to improve communication often lead to reductions in anxiety and depression symptoms. Therefore, these outcomes are relevant.
  • The reviewers expressed concern about the low participation rate among clinicians as well as cross-contamination since the same clinicians cared for both intervention and nonintervention patients. The researchers acknowledged the low participation rate, noting that it was similar to other studies enrolling physicians in communications interventions. They also noted that the participating clinics were not organized to support clinician involvement. Few clinicians in these clinics considered goals-of-care communication to be part of their patient care responsibilities. The researchers also acknowledged that this low participation rate did raise concerns about generalizability of the intervention to other busy medical practices.
  • The reviewers expressed concern about the qualitative portion of the report, finding it underdeveloped, with little description of the analyses and results. The researchers noted that the goal of the qualitative work was to provide another perspective on the findings in the report. The investigators provided additional detail in this section.

Conflict of Interest Disclosures

Project Information

J. Randall Curtis, MD, MPH
University of Washington
$2,101,900
Health System Intervention to Improve Communication About End-of-Life Care for Vulnerable Patients

Key Dates

May 2013
October 2018
2013
2018

Study Registration Information

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Last updated: November 30, 2022