Communication as End of Life Specialty

Ever since writing recently about a roundtable discussion of palliative care in the ICU, I’ve wanted to know more about a participant, Dr. J. Randall Curtis, and the End of Life Care Research Program at the University of Washington School of Medicine.

Curtis, a founder of the UW program, is a pulmonary and critical care physician whose research involves measuring end-of-life care for patients with acute and chronic illness. According to its website, the EOL program’s mission is “to improve the quality of palliative and end-of-life care for patients and their families.”

Titles of publications and current studies give some insight into the priorities of the program: “Balancing Hope and Truth-telling for Patients with Cancer or COPD,” “The Transition from Cure to Comfort: Managing Death in the ICU,” and “A Randomized Trial of an Interdisciplinary Communication Intervention to Improve Patient and Family Outcomes in the Intensive Care Unit.” 

It is evident that Curtis’ program puts a laser focus on the role of communication in improving care and outcomes. Of its four current research goals, three directly involve efforts to improve communication between doctor and patient (or family).

I also found Curtis quoted in “Terminal Uncertainty,” a lengthy piece of reporting published by Seattle Weekly in 2009, in the months between passage of the Death With Dignity Initiative and its implementation in Washington State. The story focused on the rather abysmal batting average of physicians answering the question, “How much time do I have left?” 

A doctor’s ability to predict a terminal patient’s time left was a central component of Death With Dignity Initiatives passed in Oregon and Washington, and it is a key safeguard of the version headed for the Massachusetts ballot in November, as terminal patients must be in their last six months to qualify for the lethal prescription. But given the unpredictable nature of death, does “six months” have any real meaning? 

It would appear that the physician’s shortcoming for prognosticating time left is related not to competence, but to the limits of what is knowable. In research that led to its report “Palliative Sedation – Continuous Deep Sedation as Comfort Care until Death,” the Community Ethics Committee struggled to give meaning to the term “imminently terminal.” Did it mean days? Weeks? Months? Days to weeks, we decided.

Here’s a time element that is somewhat more reliable: Should Massachusetts voters approve the Initiative in November, it will be legal by this time next year for physicians in the state to prescribe a fatal dose to competent terminal patients.

In the Seattle Weekly story, Curtis tells reporter Nina Shapiro about treating an elderly man on a ventilator with severe emphysema. "I didn't think I could get him off life support," said Curtis, who saw the man daily fail a test to breathe on his own. The man did not want to be kept alive by machine, and so Curtis and the family made the hard choice to disconnect him, with the “knowledge” that he would die.

The man didn’t die, though, and in fact began to improve, which Curtis couldn’t explain except to say that "being off the ventilator was probably better than being on it. He was more comfortable, less stressed." Curtis says the man lived for at least another year.

In another case, a woman suffered from septic shock and multiple organ failure, but her family insisted on life support, and Curtis respected their wishes. "I thought she would live days to weeks," he said. But she improved, left the hospital and returned for a visit a half-year later.

"It was humbling," Curtis told Seattle Weekly.

Amazing, even? "It was not amazing. That's the kind of thing in medicine that happens frequently."

Maybe such ambiguous scenarios are to be stared at in wonder, not understood or explained, but they are revealing in the context of what “six months to live” means. But acknowledging the ambiguity probably makes for improved communication with the family of a dying patient. Which is what made me want to know more about J. Randall Curtis in the first place.