The "End of Life in Very Old Age” study presents a fascinating glimpse into the lives and views of America’s oldest old. An ancillary investigation to a much larger study, the Health, Aging and Body Composition Study (Health ABC), which looks at the association between body composition and mobility decline, this particular investigation involved conducting quarterly interviews with Health ABC enrollees beginning in year 15 of the longitudinal study—that is, when they were between 85 and 89 years of age. These interviews included questions about preferences for aggressive care, daily symptom burden, health decision making, and concerns about health and health care. A total of 1227 patients (or proxies speaking on their behalf) completed the interviews. The results appear to show a marked penchant for aggressive care, moderated only by mobility difficulties. This may be accurate, at least for the population studied, which includes a random sample of white Medicare beneficiaries and all black community residents in 2 cities, Pittsburgh and Memphis. Or it may reflect widespread misunderstanding about what they various proposed interventions—attempted CPR, ventilator treatment, feeding tubes, dialysis, open heart surgery, an implanted defibrillator, or diagnostic tests including MRI, ultrasound, and angiogram.
The study authors stress two findings which they seem to find surprising. First, there was no association between reported “daily symptom distress” such as pain, nausea, constipation, or trouble sleeping, and EOL preferences. Second, there was an association between mobility, the ability to walk a quarter of a mile, and EOL preferences. From these observations they conclude that we should pay much more attention than we typically do on functional status, the ability to do the most basic tasks necessary to have some semblance of an independent existence. That’s been a geriatric mantra for decades. The authors also acknowledge in passing, that the preference for aggressive EOL care was associated with race and to some extent gender, with black men most likely to want “everything done.”
What the authors do not discuss, and what was not part of the survey, is the extent to which participants understood what any of the ingredients of aggressive care would be like for them. Fully 59 percent of the participants who were interviewed directly said they would want CPR attempted if their heart stopped. But did they have any idea that among patients over age 85 who undergo CPR in the hospital, only 4.5 percent are discharged both alive and with minimal neurological deficits? A total of 49 percent said they would want to be put on a ventilator if they had trouble breathing. Did they know that you cannot speak or eat while on a ventilator? Did they distinguish between time-limited treatment and chronic, maintenance treatment? The idea of a defibrillator was also in general well-received (58 percent favoring it), though not as enthusiastically as diagnostic tests such as angiograms and MRIs (88 percent). Interestingly, dialysis, which many people realize is a 3-times a week, multi-hour procedure, was endorsed by a smaller percentage, 34 percent, and feeding tubes maintained in place longer than a week were acceptable to only 13 percent. I can only speculate that prospective patients intuitively understand that having dialysis or a feeding tube would be burdensome but have little awareness of the discomforts—and in many cases of the limited efficacy—of CPR, ventilators, defibrillators, or open heart surgery.
Just as we need to move away from intervention-specific advance care planning, so too we need to stop trying to measure preferences for care near the end of life by focusing on the means rather than the ends of treatment. It’s possible that the people interviewed who said they would favor what the study authors refer to as “aggressive” treatment knew perfectly well what was entailed and were interested in life-prolongation, no matter what that entailed. But I rather doubt it, particularly in light of their being skeptical of chronic dialysis or feeding tube use.
We need to educate people about what works and what doesn’t work and what hurts and what doesn’t hurt in the last phase of life. Even more important, we need to talk to them about what matters most to them and then rely on physicians to help them understand what tests and treatments are most conducive to achieving their objectives.