Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [67]
“She took a bite, and her whole face brightened. ‘Oh, a muffin—look at that—with blueberries—and such blueberries!’ It was as if I had painted the Mona Lisa, she took such pleasure in it.”
This time, Mary’s stay at home lasted less than a month before she was admitted once again to the hospital. Deidre arrived in the evening and sat at her bedside, reading out loud a fiction piece from a collection by one of Mary’s favorite authors. Mary fell asleep during the story. Deidre sighed, then closed the book.
A few minutes later, Mary awoke. “It’s getting harder and harder, Mom. How do you see things?” Deidre asked.
“I want to keep trying,” Mary replied. “I want to fight.”
“We were all shocked and confused by what she said.” Deidre told us that she and her family were expecting that Mary would reiterate her earlier wishes and firmly decline more treatment. “But she became defiant,” Deidre told us. “And she was as clear as ever. It wasn’t that she was confused, or on any medication that could account for her change.”
In 1995, researchers published results from a nationwide project termed the “Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment” (SUPPORT). The aim was to rigorously evaluate measures that would improve end-of-life decision making and reduce the number of patients dying in the intensive care unit, on ventilators, and in pain. There were nearly five thousand patients in the study, with a range of illnesses that often are fatal: not only widespread cancer, but also acute respiratory failure; sepsis with shutdown of multiple organs like the liver and kidneys; coma; chronic lung disease like emphysema; congestive heart failure; and cirrhosis of the liver.
Patients were randomly assigned to an intervention group or a control group. The control group of patients received the usual care. The intervention group received usual care, but in addition patients were assigned a skilled nurse. The nurse provided “timely and reliable” information to both physicians and patients about the prognosis of the illness and expected length of survival. She also helped elicit the preferences of patients and their families about whether they wanted further treatment. The researchers noted that the nurse undertook “time-consuming discussions, arranged meetings, provided information, supplied forms, and anything else to encourage the patient and family to engage in an informed and collaborative decision-making process with well-informed physicians.”
The results of the study were deeply disappointing. The concerted intervention of trained nurses failed to improve end-of-life care. Specifically, the level of pain and number of days spent in the intensive care unit, in coma, or on a ventilator before death was the same in both groups. Further, researchers concluded that advance directives did not consistently improve decision making by patients and family members about end-of-life care.
What accounts for these disappointing results? Research done over the years following the SUPPORT project shows that the reason advance directives prove less useful than once thought is, in part, because a person’s wishes about treatment often fluctuate over the course of an illness. Mary Quinn was far from unusual in changing her mind.
Dr. Terri Fried of Yale University, an expert in end-of-life decision making, documented how preferences change in a study of 189 patients over a two-year period. As in the SUPPORT study, these patients had conditions typically seen at the end of life: heart failure, cancer, and chronic lung diseases like emphysema. Although many had been hospitalized in the previous year and some had even been in the intensive care unit, most of the patients rated their current quality of life as good. These patients were repeatedly interviewed about their wishes to undergo medical interventions like intubation and being placed on a ventilator