Teaching docs how to have end-of-life talks

Five years ago, Dr. Susan Block had a series of conversations with surgeon-author Dr. Atul Gawande, who later wrote the book Being Mortal: Medicine and What Matters in the End. They explored how to talk to seriously ill patients and their families about end-of-life concerns when there are no more curative treatments available and the patient is at high risk of dying within a year.

“He told me he would like to learn how to do better in having these types of conversations with his own patients,” said Block, founding chair of the department of psycho-social oncology and palliative care at the Dana-Farber Cancer Institute in Boston. “He asked if I had a checklist of questions that I ask.” Gawande is also the author of The Checklist Manifesto, a book about using checklists to reduce medical and surgical errors.

Block said she initially was skeptical about applying a checklist to a situation as sensitive as talking with patients and their families about end-of-life care. But helping doctors improve their ability to begin conversations about advance planning was appealing. So she began developing a standardized approach physicians could use to initiate and improve those discussions.

The result was the Serious Illness Conversation Guide, which Block developed as part of a collaboration between Brigham and Women's Hospital and the Harvard School of Public Health called Ariadne Labs, of which Gawande is executive director. Its Serious Illness Care Program is based on seven questions doctors should ask patients that will give them a better understanding of what kind of care will help ensure their best quality of life.

Questions focus on helping patients understand the reality of their medical situation without crushing their spirit. Doctors are trained to ask patients about their concerns and fears, their ideas about what's important to their quality of life, and to help them set realistic health goals.

The program was developed as part of a systemwide approach to palliative care. It has been used for more than two years at Dana-Farber in a four-year randomized clinical trial to evaluate its efficacy. Physicians receive training, using patient-actors, on asking the questions.

The trial organizers identified patients with potentially life-threatening conditions at an earlier stage in their disease, so that decisions could be made prior to the terminal stage and to allay patients' fears about palliative care. As many as 400 cancer patients are being tracked over the final year or two of their lives.

The study will examine whether, as a result of the program, physicians and patients have more conversations about end-of-life care, whether those conversations take place at an earlier stage in a patient's disease, and how well physicians keep track of those conversations within electronic health records so that other providers can easily access patients' care requests and advanced directives.

The study also will look at the impact of such discussions on healthcare utilization for dying patients. That's a concern because 25% of Medicare dollars in 2006 were spent on care for people in their last year of life, according to a 2010 study. Experts say too many dying patients continue to receive futile tests and procedures, which often worsen their quality of life.

“It is fascinating just seeing how even very senior clinicians get trained with a patient-actor to see how they discuss bad news and then to get them to try the seven questions for serious illness care,” Gawande said.

Block said physicians “tend to focus a lot on what procedures the patient wants. But from a patient's point of view, those are not the important questions.” The most important questions, she added, are about what type of care offers them the most quality time with their families, and what involves the least pain and suffering.

Final results of the study at Dana-Farber have not yet been published. But Block said the preliminary findings have been encouraging, with an increase in the frequency of end-of-life conversations.

Gawande said there are discussions about implementing the program at hospitals across the country, even in areas there are still “fierce debates” about whether end-of-life discussions constitute “death panels.”

A key lesson for doctors is that they need to put aside their reluctance to talk to patients about end-of-life issues because they fear patients will lose hope, said Dr. Mildred Solomon, CEO of the Hastings Center, a not-for-profit bioethics research institute. “Hope needs to be reoriented as reassurance that (patients) will not be abandoned during their final days,” she said.