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Doctors’ Anguish: Death of a Child : What Can You Possibly Say to a Terminally Ill Youngster?

<i> John Pekkanen--a noted medical journalist, book author and prize-winning magazine writer and editor--asked physicians to talk freely, frankly and anonymously about their work and lives for his new book, "MD: Doctors Talk About Themselves."</i>

The absolute hardest thing to do is to answer a young child who asks, “Doctor, am I going to die?” What do you say to a child who you know is terminally ill? How do you assess what he or she can take in the way of an answer? How do you say anything with a loving pair of parents who are just heartbroken because they know what the truth is? In some way or other, you have to be honest with the kids.

I was taking care of a 10-year-old boy, a very likable young fellow. He had had two operations on his abdomen for a malignant tumor and was treated with chemotherapy, which made his hair fall out. Children hate to have their hair fall out, so this young boy wore hats, and he had quite a collection. And you could tell how he was feeling by what hat he had on and by the way he wore it. Sometimes he would have the big bill of one of his baseball hats pulled way down over his face so you couldn’t really see him or deal with him, and other times he’d have the bill up and be cheerful and talkative.

I think he sensed that we were losing the fight, and that he was weakening and that probably meant he was going to die. He couldn’t talk about it with his family. He didn’t want to broach it with them, and they didn’t want to talk about it with him. That’s not unusual. A mother and father can’t sit down and put their arms around their child and say, “Now in a few days you’re going to die.” That’s not part of being a mom or dad.

But he wanted someone to talk to him. A very alert intern sensed this and came to me and said, “Nobody is answering this child’s fears. Everybody is avoiding it, saying he’s going to feel better tomorrow, and nobody is dealing with what he is dealing with all alone.”

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I had been a part of that. I had worn hats when I came in to see him and had joked with him, and it was always jolly. But after the intern alerted me, I made a point one day while the family was out having dinner to come into the room and sit with him and see what was on his mind. It was something I had to steel myself for because it is so painful to deal with a dying child for whom I can’t do anything. I closed the door and told the nurses that I didn’t want to be disturbed.

I asked, “Do you know what’s going on around here?”

And he said, “Yeah, I think so. I don’t think I’m going to get well.”

“Well, we’ve done everything we can, and whatever it is inside you seems to be winning,” I told him.

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It was clear that he understood this. He said, “I don’t think I’m going to live a month.”

I said no one could know for sure when, but it did appear as if he were going to die. I said I did not know why his life would be short, while his mother’s and father’s lives were so much longer. There are some things we cannot explain. I told him I would do all I could to get him well enough so that he could go home and spend some time with his horse and do whatever else he wanted to do at home before what was going to happen happened. He said he wanted to do that.

He asked me what I thought about heaven, and I told him that everyone has a different view of heaven, and whatever his idea was was just as likely to be true as mine. I told him that my view, heaven is pretty pleasant and that I thought I would see a lot of people that I loved who have gone on, and I said, “I’ll bet you’re going to do the same thing.” And with that, he started talking about his grandfather, and what a great guy he was, and how he had died, and that he hoped his grandfather would be on the other side.

We were able to get him home for a few days before he came back to the hospital for the terminal phase. He told me he was glad he had gotten home. Although I asked him from time to time if he wanted to talk about anything, we never talked about death again. He didn’t seem to want to talk about it anymore, even though he knew he was weakening, and he knew I knew he was weakening. He lived for another month.

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I operated on a little girl for a malignant kidney tumor. Six months later, despite X-ray therapy and drug therapy, she developed a metastasis (a spreading of her disease) to her lung. I removed a lot of her lung tissue, and although she was having a very hard time in the post-operative phases, I thought she was going to get better. I thought she had enough lung to make it.

Her mother and father were absolutely exhausted by this ordeal. They were very nice people--intelligent, thoughtful. They’d been with her almost constantly for the five days since the surgery, and that evening after I made rounds I told them that little Carolyn would need them to be fresh. So I said, “Why don’t you go home and take a shower and eat supper, and I’ll stay here with her?”

I had developed a very close attachment to this little girl. It so often seems that children with malignant diseases are really the most beautiful children. And she was. Five years old, blue eyes, blond hair, adorable smile. She seemed to love everyone. You couldn’t help but be drawn to her.

Her parents left the hospital to go home, and I went in to sit with her. We were talking about lots of things--her favorite doll and what she was going to do when she got home. Her intravenous needle was hurting her; it apparently was rubbing on a nerve or something, and she winced over and over. So I went and got some Novocain and stuck just a tiny bit around the needle so she would feel better. The pain went away, and she was very happy.

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We talked on for 20 or 30 minutes, and then she became quiet for a little bit, and I thought she was going to sleep so I didn’t interrupt her. And then she opened her eyes and looked up at me and called my name and said, “I love you.” And then she closed her eyes and died.

I have never seen a death like that before or since--not even in the movies. She was perfectly conscious, told me she loved me, and the next moment she died. I had to face her mother and father, who were coming back to the hospital and who had thought she would be well enough to go home in a little while. I don’t think I have ever had such a wrenching experience in the practice of surgery.

I operated on a beautiful young girl with a brain tumor who initially did very well. After her recovery, she returned to high school and scored quite high on her college boards and was accepted at Vassar. She was a wonderful, charming girl with a warm family. But quite suddenly her tumor disseminated and accelerated, and within a short amount of time we knew she faced a hopeless situation. Her family decided that they would give her no more treatment, which was appropriate.

She had come in for a number of follow-up visits, and I had grown very attached to her. I wanted to see her before she died because I liked her so much, and I think I have an obligation to my terminal patients to help them leave the world any way I can.

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When I visited her, she was very pleased. She couldn’t talk, but she knew who I was, and I knew it meant something to her that I had come to visit. I just held her hand and sat with her for a while. She died the next day. This was hard to do, but it is part of what I have to face because I deal with so many children who are terribly ill, and many of them don’t make it.

I don’t tell a child he or she is going to die, and they seldom ask. If they do, I tell them everyone will die someday. I don’t think it’s my place to tell them they are dying. If they were adults and had to get their affairs in order, I would tell them, but children don’t have the same responsibilities as adults and don’t anticipate as adults do.

I tell the families when their child enters a terminal phase, and that is always painful because I know how hard and how much they have hoped. I’ve found that the one thing families want from me at that point is to know I care.

When the end is imminent, I let the family remain alone with their child as much as possible. I try to get all the IVs out, keep all the other doctors and nurses away, and just let them be together as a family to make their final peace.

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I once had a mother with a beautiful baby who was dying from a tumor. As the baby neared death, I said, “It’s time for you to hold him in your lap. We’re going to leave you alone.” She held her baby as he died. I think parents need to know that when the end came, they were there to give their child comfort.

For me, the death of a child is always a terrible, painful wrench. I’m filled with an overwhelming feeling of impotence because I can’t do anything to help.


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