When Medicine Fails, What Then?

David Bearison records the stories of medical staff in the search for better ways of caring for dying children.

It is the worst moment in an already heart-wrenching time: the stark realization that a child will die of an incurable illness, a complication, a transplant that has not taken.

And while the psychological strain of that realization deeply shakes young patients and their parents, it may also affect the judgment of the physicians, nurses, and social workers who continue treating the children--and advising their families--in the near-absence of hope.

"What we found is that when things go wrong, the science starts to go out the window and beliefs and values begin to take over," says David Bearison, professor of psychology at The Graduate Center and an attending at the Children's Hospital of New York (CHONY). "That's true for physicians as well as for parents."

At any given moment, some five thousand American children are living out the final six months of their lives. These children usually know they are dying and can sense the distress of their family members, according to studies. Yet their treating physicians often avoid directly addressing end-of-life issues, says Bearison, choosing instead to step up aggressive chemotherapy, experimental procedures, or tests.

"I was surprised at how messy and chaotic the last days or hours can become," he remembers. "Not only medically messy, as more and more procedures are tried and discarded, but emotionally messy. A good example is the do-not-resuscitate orders: doctors typically wait until the very last day of life to get them from parents."

To find out why, he spent one year interviewing 110 medical staff treating terminally ill children at a prominent Manhattan pediatric hospital. The narratives are collected, analyzed, and discussed in Bearison's book When Treatment Fails: How Medicine Cares for Dying Children, to be published in January by Oxford University Press.

The stories that Bearison recounts turn out to be deeply personal and poignant. As the children fail, medical interventions are attempted; anguished parents scream hysterically and collapse into depressed acceptance; long periods of waiting are punctuated by frenetic life-saving activity. Throughout, physicians and social workers grapple--sometimes calmly and directly, sometimes poorly or evasively--with how they should inform a child and his or her parents that a situation has become hopeless, and how to make the child's last days or hours more comfortable.

Attending physicians and staff in the narratives display a range of emotions--from detachment, cool professional focus, or even abrasiveness ("Let me do what I need to do. Remember her when she was smiling, not when there was almost nothing human left")--to sadness, frustration ("It was the worst day of my life, if I can say that"), contentiousness, and compassion ("This is the end. Talk to her, I'm sure she can hear you").

Bearison has been probing this difficult area for years. His 1991 book They Never Want to Tell You: Children Talk About Cancer, published by Harvard University Press, boldly recorded extensive first-person interviews with ill children. He and wife Linda Granowetter--medical director for pediatric oncology at CHONY Columbia-Presbyterian Medical Center--often collaborate to care for sick and dying children.

The new book seeks to explore previously uncharted territory: the inner workings of physicians' minds as they wrestle with the deteriorating health--and approaching death--of very ill young patients. For example, found Bearison, doctors often question their own abilities when children's illnesses prove incurable despite aggressive treatments.

"When a child dies, it is a failure of treatment, not of staff," points out Bearison, "yet a certain number of physicians feel that, if they are not aggressively treating with curative intent, they should not be there."

Aggressive, last-minute treatments occasionally work, but they can also be painful for the patients, says Bearison. One medical study has found that more than half of children with cancer studied were receiving toxic, draining cancer therapies even near the very ends of their lives, when those treatments could not be reasonably be expected to effect a cure. An entire chapter of When Treatment Fails is devoted to discussing the difficult topic of withholding or withdrawing treatments.

"What works or doesn't work in these cases is very situational, and that's difficult for physicians to cope with," points out Bearison. "I clearly got the impression that physicians were much more aggressive in holding out for more and more procedures to try to save a life, while the nurses were more accepting of a child's condition."

Bearison did note some positive trends in end-of-life discussions in the hospital he studied. "The research was good in this sense," he explains. "We did help to change the culture at this one hospital, and now staff are talking more openly with each other about the end of life."

There are promising new areas in the field, as well--some of which Bearison is researching. After years of studying terminally ill children and the physicians who treat them, Bearison has begun advocating for greater inclusion of psychologists in the end-of-life process because they bring better coping methods to the hospital bedside. And he works with hospitals to find more opportunities for physicians to talk openly about end-of-life issues with each other, for example during the morbidity and mortality conferences where patient deaths are reviewed.

"I feel like that is a good time and place to begin discussing these issues," he says. "It is a time for teaching and learning, and the palliative care at the end of life should be part of that."

In a future study, Bearison will next examine the questions parents of very ill children and doctors ask each other. Bearison believes his research team can learn a great deal from questions' content and frequency, and he theorizes that disengagement on the part of both physicians and parents accelerates as a terminally ill child's life nears its end.

"If that turns out to be true, I'm then going to propose various interventions to help combat this disengagement," he says. "Once again, the key is to get medical staff to be more open with each other and with parents. That is what I am committed to here."