Physicians’ end-of-life preferences
One of the studies mentioned in Murray’s WSJ piece was a 2003 article by Gallo and associates3 that examined what physicians’ want when it comes to end-of-life decisions. Among 765 physicians who responded to a detailed questionnaire, 64% said they had created an AD. This compares with about 20% of the general public.
That study was part of the ongoing Johns Hopkins Precursors Study involving members of Johns Hopkins School of Medicine classes of 1948 through 1964, who volunteer to keep a running medical chart of their entire lives with detailed annual updates. One of the longest longitudinal studies of aging in the world, the Precursors Study examines psychological, behavioral, and other characteristics that predict morbidity and mortality.
Joseph Gallo, MD, MPH, Precursors Study Director and Professor in the Department of Mental Health of Johns Hopkins Bloomberg School of Public Health, told Psychiatric Timesthat what makes the study so special is that some physicians have been part of it for 50 or 60 years and they have been very dedicated about responding to survey questions. What’s more, Gallo said, since the respondents are physicians and know about the end-of-life interventions, their watching a medical drama on TV or seeing a documentary about CPR, for example, doesn’t affect their decision making.
In their 2003 article, Gallo and colleagues3 reported that two-thirds of physicians had completed an AD. In comparison with physicians without an AD, they tended to be somewhat older, to have mean mental health scores of 86 (vs 83.4) on the Medical Outcomes Study Short Form Health Survey (SF-36), and to be more likely to report having discussed their wishes with their physicians or with a spouse or family member.
When presented with a scenario in which they had irreversible brain damage or disease that left them chronically unable to recognize others or to speak, the physicians with an AD were also more likely to refuse most if not all 10 life-sustaining procedures (eg, CPR and mechanical ventilation) listed on their questionnaire. But 86.7% did opt for pain medications, even if those medications dulled their consciousness and indirectly shortened their life.
While not reported in the article, Gallo said the researchers examined which physicians wanted the least interventions according to their specialty. “Surgeons wanted the least interventions, internists and pathologists were in the middle, and psychiatrists wanted the most,” he said, adding that the results were not statistically significant.
Since the 2003 article, several other articles emanating from the Precursors Study have been published.
In 2004, Straton and associates4 found that physicians with declining functioning and worsening depression were more likely to prefer high-burden treatment than those with-out such declines. These researchers concluded that there is a need “for continuous discussion of preferences for care, particularly in the context of dynamic changes in health status.”
Wittink and coworkers5 estimated the stability of preferences for life-sustaining treatments across 3 years and examined whether declines in physical functioning and mental health were associated with changes in preferences for end-of-life care. Those physicians who wanted the most aggressive end-of-life procedures at baseline were the most likely to change their preferences. Forty percent of the group who wanted everything stayed in that group, but 60% changed their minds over time and wanted less aggressive care. In contrast, 80% of physicians in the least aggressive category at baseline stayed in the same category at follow-up.
Currently, Gallo and his team are working on a 6-year follow-up study looking at the stability of preferences for end-of-life care. They are also analyzing the physicians’ end-of-life preferences and possible factors and characteristics related to changes in those preferences.
“For example, diabetes developed in some doctors after we started asking them about preferences for end-of-life care. We can look at how that diagnosis might be associated with any changes in their preferences,” he said.
Gallo and his team recently submitted a grant application to the National Institute of Nursing Research, part of the NIH, to conduct a mixed-methods study with the surviving 800 physicians in the Precursors Study group.
In addition to the questionnaire, the researchers hope to perform some telephone sampling in which they ask open-ended questions.
“We want to know, in the physicians’ own words, how they are thinking about their end-of-life preferences and who they would want to make decisions for them,” Gallo said. His research team, as part of the grant application, hopes to study what happened with physicians who have died, by using Medicare billing records to determine the services they received and by interviewing the deceased physician’s family members.
“We want to study whether their preferences actually drove what happened to them during the last months or year of their lives,” Gallo said. “If physicians cannot control what happens to them, then it’s going to be difficult for laypersons to control what happens to them.”