Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [68]
Nearly half of the patients were inconsistent in their wishes about their treatments. Although more people whose health got worse over the two-year period showed shifting preferences, even those whose health was stable changed their wishes. Completing a living will or advance directive had no effect on whether they maintained or shifted their initial thoughts about what therapies they wanted.
For that reason, Dr. Rebecca L. Sudore of the University of California at San Francisco, with Dr. Fried of Yale, wrote in the Annals of Internal Medicine in 2010 that the “planning” in so-called advance care planning needs to be redefined: “The traditional objective of advance care planning has been to have patients make treatment decisions in advance of serious illness so that clinicians can attempt to provide care consistent with their goals.” But such advance directives “frequently do not . . . improve clinician and surrogate knowledge of patient preferences.” The “traditional objective of making advance decisions,” setting out a path that physicians and family members can follow in order to honor the earlier wishes of the patient, is a “fundamentally flawed” objective. Dr. Muriel Gillick, a geriatrician at Harvard Medical School and researcher in end-of-life care, wrote that same year in the New England Journal of Medicine, “Despite the prodigious effort devoted to designing, legislating, and studying advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”
Patients deviate from their own advance directives because, like Mary, they often can’t imagine what they will want and how much they can endure when their condition shifts from healthy to sick and then to even sicker. As Sudore and Fried noted, “Individuals have difficulty predicting what they would want in future circumstances because these predictions do not reflect the current medical, emotional, or social context.”
Why is it so difficult for us when we are healthy to imagine the future under difficult circumstances? Sudore and Fried suggest that “one major determinant of changing preferences is adaptability. Patients often cannot envision being able to cope with disability and report the desire to forgo aggressive treatments in such states. However, once patients experience those health states, they are often more willing to accept even invasive treatments with limited benefits.”
In addition to underestimating our ability to adapt, two other cognitive influences are at work. First is focalism. This refers to a narrow focus on what will change in one’s life while ignoring how much will stay the same and can still be enjoyed. Mary originally thought that life wouldn’t be worth living if she was bedridden. And indeed when she became ill, her family, being healthy, viewed the quality of her life as so poor that it didn’t seem worth continuing. But Mary found that she could still take tremendous pleasure in even the smallest aspects of living, the taste of her favorite muffin, served warm, prepared by her devoted daughter. She wanted to go on living, despite once imagining that she would not.
Second is what we term “buffering.” People generally fail to recognize the degree to which their coping mechanisms will buffer them from emotional suffering. This is because such coping mechanisms are largely unconscious processes. Denial, rationalization, humor, intellectualization, and compartmentalization are all coping mechanisms that can help make life endurable, even at times fulfilling, when we are ill.
The will to live, under even worsening conditions, is very powerful.
Mary’s fevers continued. A repeat scan of her liver showed that the abscesses had grown larger, their walls thicker, and more “shadows” filled their centers. The resident doctor showed Deidre and her family the images. Deidre