Over the years I have occasionally written about patients' death and their survivors. I realized I hadn't thought very deeply about death and grief until my fellowship years in pediatric hematology-oncology. Although the death of any patient is saddening and emotionally disturbing, dealing with the death of children can be even more difficult with which to deal.
How we deal with the death of one of our patients depends to some degree on our prior experiences. Here is a brief description of what I remember about my early experiences.
As a Child
While I was growing up, members of my extended family had died and I had witnessed grieving by relatives, but I cannot say that I had more than a superficial understanding of their grief. In our Italian-American culture at that time (1940s and '50s), funeral wakes were major social events and my sisters and I always went with our parents. Wakes lasted three nights and many friends and relatives attended more than one night. Women in the immediate family of the deceased wore black and most men wore suits and black ties.
There were so many flowers that the smell sometimes made me nauseated. Upon arriving, we went up to see the body of the deceased and knelt and said a prayer (we kids just stared at the body). Then we would visit the decedent's close relatives, who sat near the casket, to express our condolences; the women always had a forlorn look and held a wet handkerchief. My mother and father then sat and chatted with friends, catching up on the news since the last wedding or funeral. We kids looked for something to do outside the chapel; we hung out with cousins and looked for where the food and drink was kept.
What I learned as a child and teenager from these experiences was that people died, relatives of the deceased were very sad for a long time, and they cried a lot. There was an important ritual to be performed that we were a part of, which for us ended at the cemetery. And if the deceased was a married man, his widow often wore black for an entire year, and sometimes longer. I felt sadness when I was with those grieving.
As a Medical Student
Even when I was a medical student and then an internal medicine resident dealing with patients dying in the hospital, the grief of survivors often was witnessed only briefly or not at all; usually we barely knew the family. I had only a vague and incomplete notion of what the impact grief would have on survivors the next day, much less during the coming year and beyond.
As a Fellow
My awakening came soon after starting my fellowship. I now had continuous contact with the family and far greater responsibility for the patient. I saw my patients at every outpatient visit and every day they were hospitalized. At every visit I also saw a parent, usually the mother or both mother and father, so a closeness to the patient and family often developed. We pediatricians often complain that the medical establishment too often looks upon children as little adults. One reason for this complaint is that the relationship of doctor and nurse with the patient is enriched and complicated by the essential role and consistent presence of the parents and family.
A second reason is that the patients are babies and children and unique skills and patience are needed to earn their trust. And once trust is established, a special bond of affection and even love is often formed.
As a Parent
And in those early years of the chemotherapy era, virtually all of my patients died. I was confronted with the ineffable and inconsolable sadness and grief of the parents and family. I had two babies of my own and couldn't imagine losing them, much less how I could possibly manage if I did.
I began to wonder how I could help those families, whether there was anything I could do before or after the death of a child. There was always sympathy, but not much help from my colleagues. At that time, and it is probably largely true today, one was expected to suck it up, deal with it, and move on. But I found it difficult to move on. So I began to read everything I could find about death and dying and grief. Most of what I found was in a philosophical or religious vein; that was interesting, but wasn't much help for what I wanted. Then I got lucky.
I went to see the chair of psychiatry and explained my interest. He introduced me to a child psychiatrist, Dr. Ed Futterman, who became intrigued by it. He suggested that we explore family grief after the death of a child by interviewing them. For me this was uncharted waters; luckily he was a very skilled interviewer of adults as well as children. My relationship with most families was good so they agreed to talk to us about the painful experience. We usually interviewed families, siblings as well as parents, individually, months after the child died. We made recordings of some of these interviews with their permission and I still have some of them.
The experience was life changing for me. All family members were still grieving, but the depth and manifestations were quite varied. Anger aimed at God or themselves or (indirectly) at us was common. In one case a mother was convinced that the child got leukemia because she wasn't a good housekeeper and that some infectious agent from dirty dishes caused the disease; no amount of trying to explain it away with science had any effect.
But the interview I remember best was with a 3-year-old sibling close in age to the deceased child. I was not present; Futterman believed, and I agreed, that this was a delicate matter and he needed to do it without the parents or me. Later, we listened to the tape together. I was amazed at Futterman's tact and skill and astonished at what this 3-year-old boy knew and expressed. When asked what he thought would happen to his brother Robby after he got leukemia, he said, “He gonna die.” How did he learn this? He must have overheard other kids or parents talking. Futterman asked him about how his parents acted after Robby got leukemia. He said, in effect, that they spent more time with Robby, that they loved Robby but didn't love him. Even this small sample gave us an eye-opening taste of the lasting and sometimes devastating impact of grief on the whole family.
After I finished my fellowship and went to St. Jude, my interest in this issue continued. An invited speaker, Dr. Elizabeth Kubler-Ross, had begun writing about death and dying and was a proponent of open discussion and a better understanding of the psychological phases of death and grief. Dr. Myron Karon, who was at the NCI, wrote a paper about the lack of openness and candor by the doctors, nurses and parents with pediatric patients. No one even told children the name of their disease. Of course they knew, he said. Just like the little boy we interviewed, there are many ways to hear it. But the silence prevented candid discussion, creating a wall between parents and child that may have made the grief even worse.
After all the reading I have done, for me the best book on grief is “The Year of Magical Thinking,” by Joan Didion; it is a wonder. Didion describes the impact of the sudden death at the dinner table of her husband of 40 years, the famous writer John Gregory Dunne. She talks about trying to make sense of it, trying to relive it, not changing anything in the house in case he came back, and all the other magical thinking that this intelligent, thoughtful woman went through. It is a stunning and truly enlightening reading experience. Her skills as a professional writer make it the deepest, most impressive and most informative description of grief I have seen.
Lastly, I shall describe my very first experience with the death of a child. When I was 6 years old, my 9-month-old brother became sick with the croup (tracheobronchitis). The doctor came to our home and said he had to be taken to the children's hospital. He died soon afterward and my parents were devastated. His body was in an open casket in our living room for several days (a not uncommon practice in the 1940s); my parents could not leave him. I often went into the room to see him and he looked like he was just sleeping.