THE DEATH OF A CHILD:
 A BEREAVED DOCTOR'S PERSPECTIVE

by Barbara Wiseman, M.D. Sayre, Pennsylvania

A child dies, and a young couple experiences a shattering loss. In their grief, bewildered and confused, they turn to the professionals around them for guidance. They need information, direction and support. They may look to their doctor as an authority, one who has been with others when a death has occurred, one who understands what they have experienced and who will have answers. But the doctor may withdraw, responding inappropriately or not at all, thereby deepening the family's sense of isolation and confusion.

The parents feel hurt and angry with the doctor, the hospital, and the medical systems that have failed them. The doctor is frustrated and puzzled, not understanding what more the family expected. After all, everything medically possible was done. What more could have been done? The breakdown in communication tears apart the grieving family.

My husband and I have lived both side of the experience, for we are both doctors — and we were that shattered couple. The great awakening came when our son died. When that most terrible of nightmares began, we learned how little we or our fellow physicians understood about grief.

As physicians, we have dealt with death or the threat of death as an everyday occurrence. We learned in medical school about stages of dying and prevention of death. We discussed the ethics of dying, the right to die and the terminally ill. In residency, we learned the “look” of death and how to fight death. When a patient died, we dealt with our own emotions, our own sense of failure and frustration; but when death won, rarely were we given time to deal with those feelings.

We were expected to keep working, functioning and acting professionally. At no time did we receive any training in the grief process or how to help grieving family members. We had been trained to work with the disease process, not in how to help the survivors. When someone died, we felt our job was over, and we had minimal involvement with the family. Doctors have little or no training in the stages of grief, so they often do not understand or recognize them. Since they are usually uncomfortable with the overwhelming flood of emotions, they feel the family should be left alone — a safe position for a physician who doesn't know what else to do.

Lack of training about grief is the first communication barrier between families and physicians. In our family despite our medical training, we were no more prepared for the enormity of grief than any other parents.

Is the fear of lawsuits another communication barrier for physicians? Certainly it's part of the problem that prevents them from talking enough with their patients and families. Many doctors are hesitant to talk to patients because they believe that vulnerability will make them more open to lawsuits, but the irony is that most lawsuits occur because people feel the doctor didn't talk to them! Litigation, however, maybe just a scapegoat when there are other reasons for the lack of communication between parents and doctors.

In our culture, the image of a doctor is still paternalistic—a father figure or the Marcus Welby type. Many physicians have incorporated this idea into their image of themselves and how they expect to function. When a patient dies (and this is especially true when the patient was a child), their sense of failure, questioning and guilt is only a smaller echo of the parent's distress. When parents begin to question the treatment or care of their child, the doctor may be wondering in his heart, “Did I miss anything?”

To a caring physician, those questions can appear very threatening. Even when a death is absolutely unavoidable, because of their paternal feeling, doctors often agonize over some of the same internal questioning that parents feel.

In my professional life when a death occurs, I feel a sense of failure and defeat because, as a doctor, I was supposed to prevent it. I'm an obstetrician, and if a woman comes in with a stillbirth, I'm devastated. Intellectually, I know it happens, and although her medical history can be entirely normal, I'll pore over her chart, looking for clues, racking my brain for something I might have missed. If parents question me, I wonder if they are questioning my competence and care. If my husband, who is a surgeon, loses a trauma victim, he'll hug our children and then sit up long into the night discussing all they tried to do and wondering if there was anymore he could have done.

When my own son died, in my role as a parent I had a million questions both large and small. I was trying to make sense of a senseless happening. Why? How? What happened? Whose fault is it? Is it my fault? Could it have been prevented? What if ....? One of my first responses to our son's death was to look for answers. I buried myself in the medical library for two weeks, only to be shocked by the limits of medical knowledge.

As parents, we all ask "why" but as a doctor, I really expected to find an answer. Medicine presents itself as if it has all the answers, but it doesn't and it never will. In fact, it has only very few. Desperate parents assume there should be answers, but when they turn to despairing physicians and ask "why" often there is no known answer. That is where parents and physicians alike have been misled. Medicine is a science of probabilities and statistics, of syndromes and "likely outcomes," but it cannot always answer "why?"

Why does one child get cancer and another one doesn't? Why did another child not survive the accident? Since medicine is supposed to have all the answers then certainly one more test, one more medicine might have worked. For the doctor, one more journal, one more book should have held the secret. Doctor and family alike are angry and frustrated. Like parents, doctors have been led to believe that there are answers, but sometimes. there are none.

All of us who have had a child who died have learned that bad things don't just happen to other people — they happen to us too. And yet we somehow feel that maybe certain people have an advantage. Doctors, for example, have the best of medical care, they can pick the best physicians, they have the inside track. But I'm a doctor and my husband is a doctor, and our son died anyway. Being a doctor doesn't mean we are more protected or that horrible things don't happen to us.

Were things different for us in the hospital because we are doctors? Physician friends and hospital personnel may give us special treatment, but it may mean worse rather than better treatment. Professional people may assume we already know everything and so tell us even less. Peers may avoid us because it's too personal. Or we may be expected to act "like professionals" even when tragedy happens in our personal, not professional, lives. We, too, are left alone and isolated.

Lay people and medical people alike think that because doctors deal with death on a regular basis, somehow they have become immune so that their own grief is less severe, less deep, less profound. People expect us always to be competent and controlled even when our world has fallen apart. My husband expressed some of our special frustrations this way. "I've helped all these people, in fact given up much of my life helping people. I can work medical miracles, but I couldn't save my own son."

As physicians, within a week we were expected to walk back into the hospital where we, as parents, had lost a son. We were expected to function effectively and efficiently in a place we'd rather never have been near again. In the ultimate irony, my husband was called back to work on a child in the same ICU bed where our son had died only ten days before. His colleagues were puzzled when he was unable to continue!

When we attended support group meetings and other parents learned we are physicians, we were inundated with questions. Parents saw us as a source of information—information they felt they hadn't received from their own physicians. Though knowing all the medical stuff hadn't stopped our own son from dying, it felt good to us to be able to help other parents. We began to feel useful and worthwhile again, but is was painful to see how the medical community had let so many parents down. We could easily answer many of the simple questions that people asked, but we felt their physician should have answered these questions. Why didn't their doctors give more information?

Parents, families, fellow sufferers, death and grief are two different experiences. Only we, the bereaved parents, have experience in grief. The physicians do not. We must be the ones who are communicators—the teachers about grief, and the one group that really needs to learn is physicians.

They will listen to us because they really do care; they just don't understand. They'll be lucky to learn from us rather than the way we had to learn—by the deaths of our children.

(Reprinted with permission from The Compassionate Friends USA National Newsletter-Summer 1993PO Box 3696, Oak Brook Illinois 60522-3696)