Abstract
By David Bearison. New York: Oxford University Press, 2006, 312 pages, $27.00.
In When Treatment Fails: How Medicine Cares for Dying Children, Bearison illustrates the dynamic between medical support networks and families as they care for children at the end of their lives. His descriptions are vivid through the use of theoretical, factual, and narrative accounts. Consistent with the aims of pediatric palliative care, Bearison shows how teams of medical professionals react when the goal of curative treatment is no longer achievable, turning the focus to enhancing the families' quality of life.
After describing several scenarios involving parents, siblings, patients, and their health care providers attempting to achieve quality-of-life goals, Bearison encourages readers to interpret how professionals (attending physicians, fellows, residents, interns, medical students, house physicians, nurse practitioners, registered nurses, child-life specialists, social workers, and psychologists) describe their roles and process their memories of children's hospital deaths. The treatments they give, of course, include much more than steroids, tricyclics, methadone, morphine, and other medications. One social worker recalls, “I spent a lot of time just sitting in the room… just providing emotional support and a lot of hand-holding and encouragement, and that was very difficult” (p. 44).
The barriers for caregivers of dying children are different from those of adult hospice patients, as pediatric palliative care takes a family-centered approach. The barriers include culture, language, unpredictable and uncontrollable diseases, drugs, paperwork, body image, uncomfortable conversations, DNR orders/advanced care planning, denial, and the struggle between curing the disease and providing comfort to the whole family. Illnesses that qualify children for pediatric palliative care are often longer in duration. Caregivers may express a stronger desire to continue aggressive treatments as they hold tightly to an unrealistic hope for a cure to avoid the anomaly of outliving their children.
“We're the ones that are left at the bedside… You help them live, but then there comes a time when you have to help them to die, to die in peace” (p. 116). The stories illustrate the raw emotions and struggles with life-or-death decision making, anticipatory grief, and guilt that sometimes gives rise to resolve, hope, and meaning-making in families of very sick children.
As a researcher of pediatric palliative care within the domain of health psychology, I highly recommend Bearison's book to anyone interested in this field. The in-depth perspectives captured from medical caregivers prove that pediatric palliative care is far more than technical medicine.