Guidelines aimed at changing end-of-life conversation
From the July-August ACP Observer, copyright © 2007 by the American College of Physicians.
By Jessica Berthold
Though there's an increasing push for advance directives, the difficult decision to stop life support for an ICU patient is usually still made by a patient's family. Yet research has shown doctors don't provide as much support or information during end-of-life conferences with relatives as they could, either by talking too much and not asking questions, or by failing to address emotions like guilt and sorrow.
That can change. A February 20007 study in the New England Journal of Medicine found that ICU clinicians who followed guidelines emphasizing empathy, listening and asking questions were able to reduce stress, anxiety and depression in family members of dying patients more than those who didn't use the guidelines.
The study assigned the family members of 126 patients in 22 ICUs in France to receive either a customary end-of-life conference lasting 20 minutes, or a 30-minute conference following guidelines summarized by the mnemonic VALUE:
- Value and appreciate what family members said,
- Acknowledge family members' emotions,
- Understand who the patient was as a person, and
- Elicit questions from family members.
Ninety days after a patient's death, 69% of the family members in the control group reported symptoms consistent with a high risk of developing post-traumatic stress disorder compared with only 45% in the intervention group, Impact of Event Scale scores revealed. About 45% of intervention group relatives reported significant anxiety symptoms vs. 67% in the control group; for depression it was 29% vs. 56%, according to the Hospital Anxiety and Depression scale.
The results suggest that spending more quality time with family members can significantly improve their well being after a loss, yet doctors are often hesitant to commit those extra minutes, said Barbara J. Daly, PhD, RN, Director of the Clinical Ethics Program at University Hospitals of Cleveland and co-writer of an editorial to the study.
"Doctors complain that there isn't enough time, but if you work in an environment where death happens a lot, you have to plan to invest that time," said Dr. Daly.
Still, the way the time is used is more important than the time itself, said J.R. Curtis, FACP, a co-author of the study and a professor of medicine and director of the End of Life Care program at the University of Washington.
"Just making the conference longer doesn't necessarily make it better. Clinicians must improve their listening and their communication skills."
—J.R. Curtis, FACP
"Just making the conference longer doesn't necessarily make it better. Clinicians must improve their listening and their communication skills," Dr. Curtis said. "Both doctors and nurses need to be involved."
The simplicity of the VALUE mnemonic—and the fact that it can fit on an index card or be memorized—is part of the reason for its success, he added. The mnemonic was based on earlier research Dr. Curtis conducted on family conferences which contained more specific guidelines on how to hold the meetings. Many of those tips appeared in a 2001 article of Critical Care Medicine (Vol 29, No. 2), which clinicians in the French study received as background material. They include:
- Introduce everyone first. Set the tone and goals of the conference in an approachable way;
- Find out how much the relatives already understand about the patient's situation as a way of gauging how much information to give and how much detail and technical language to use—though technical language should generally be avoided;
- Review the patient's current condition and what has happened up to that point. Discuss prognosis honestly, and acknowledge uncertainties in prognosis;
- Support the family's decision on how to proceed with patient care. Don't discourage hope, but try to direct hope toward the goal of a comfortable, dignified death. Discuss what the death might look like;
- Make it clear that a decision to withhold life-sustaining treatment doesn't mean the clinicians will withhold care from the patient; rather, the clinicians will focus their care on making sure the patient is comfortable while removing treatments that aren’t indicated or wanted. Also make clear exactly how symptoms will be managed and that the family members will have access to the patient if they choose to be there;
- Actively listen to the family. Repeat what they say to show you heard them. Recognize strong emotions and encourage more discussion about them;
- At the end, summarize the main points and ask if there are questions. Allow for silence, which can lead some to express themselves or ask questions they otherwise might not; and
- Make a follow-up plan for future meetings, if needed, and ensure family members know how to reach staff.
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