Q: How do you feel when a child dies?
A: The moments that I substitute my own children for that child are very difficult and, being a parent, I will often do that. That's what allows me to be more sensitive to the parents. What allows me to bear it is that ultimately I realize that it's not my child. Denial is one of the best forms of coping we all have and I have an excellent denial mechanism.
Q: What's the most difficult part for you when one of your patients dies?
A: When I have to be the one to tell the parents when it becomes obvious to me that the child is dying. Usually they see it, but until it's confirmed by the physician it's possibly not going to happen.
The most difficult time is usually after a period of extreme agony. It's very difficult to watch the family watch the child. I usually will come into the room for periods but then I will spend more periods of time out in the waiting area. I want to be there at the end but I don't want to be there. I also consider it a very private time and I like my families to be together alone.
I don't think that any parent gets over the death of a child. And each and every day is a day that gets less full because that child is dying. What routinely amazes me is the appearance of normalcy that they are able to present when they are bearing a stress that I consider overwhelming.
Q: Do you ever cry?
A: At times. I cry for the kids sometimes and for the parents sometimes. I don't find that my emotions get in the way of my being the physician and I think in many cases it helps. Keeps me sensitive to the extreme emotions that must be experienced by the family at that point.
Q: What about anger? The night Katie died I threw books at the walls. Do you ever feel angry?
A: Not about this. I have a sincere conviction that death is part of life. That although we should fight it as hard as we can, there are possibly reasons for things happening. It doesn't mean that I accept what happens. I just try not to be angry that they're occurring.
There's no correct way to handle the death of a child. Even when we sit down and tell a parent the diagnosis, many people are afraid to react because they're worried that they're not reacting the "correct" way. There's no correct way to react to things like that. It's not something we're supposed to be told.
Q: Sometimes I have moods of being guilty. What didn't I do, that I could have done? Was there something that I missed being? Do you ever feel that way?
A: Those are the toughest times -- [when] I allow myself the luxury of feeling that I really could have made a difference in the outcome and that I made a mistake. Those are the agonizing moments. What gets me through is my belief that the decisions we make medically are in generalnot that difficult. Whether or not a particular child's tumor responds is dictated by factors that are not in our control. The care we give is essentially uniform for any given child's disease. What makes one child's tumor respond and another's progress is not understood.
Q: Do you form emotional attachments to the children?
A: I would hate to think that I practice medicine without forming an emotional attachment to the kids.
I find myself often intentionally extracting my feelings while making decisions because it's important that I try to be as objective as possible. At the same time, especially treating kids with cancer, it's important not to always make an objective decision but to let some degree of emotion influence an early decision on whether to continue treating or how aggressive to be.
There are times that we continue treatment when experience would tell us that, regardless what we do, eventually that child will succumb to the disease. And yet to come to a family and say, "Your child's going to die, if not in the next couple of months in the next year or so, and therefore there's no reason to do anything else," would just not be appropriate.
If we can buy six or nine more months of what I call "good time" -- when a child is happy and not suffering from the effects of chemotherapy, and with the family -- then that is a very worthwhile attempt.
Q: After Katie's recurrence I knew that her chances were very slim, but I always believed that there was a little bit of a chance and I believed you would have told me if there wasn't. Was I right?
A: I'm a little bit of a fatalist, so I always believe there's a chance. I believe that as long as the child's alive, things happen that we don't understand medically. We just have to make the opportunities for them to happen. I've seen children that we've come back to with second-or third-line treatments have dramatic responses either for very long periods of time or they're continuing to respond. And medically I've no explanation.
Q: When a child is terminal, do you usually tell the child?
A: The first step is telling the parents and making sure they're aware of exactly the prospects of death and how imminent. Then we make a joint decision. My own feeling is that the patients rarely need to be told that they are dying.
They should be told that things are not going well and then they usually make their own conclusions from the other events that are going on. It's unusual for a child to come right out and ask, "Am I going to die?" Those that do it are usually those that are emotionally capable of hearing the answer. We don't afford the parents the luxury of asking, though; we will tell them.
Q: But if a child doesn't ask, you won't tell them?
A: I won't tell them. Now if the parents want to tell them, that's their decision. That child still has to face each day and each hour and each minute until it happens. I don't know how anybody can face death knowing it's going to happen. Even unrealistic hope gives people strength to enjoy the last remaining period of time that they have. I personally think it's charitable to let a child continue to deny it if that's what they're doing.
Q: But you think children often know how bad their situation is?
A: I do. Kids pick up information from numerous non-verbal cues. The one I'm most conscious about is my own demeanor. If I come in with a smile and a joke, they assume that the information I'm thinking, if not telling them, cannot be that serious. If I come in grim-faced -- usually with the parents with tears in their eyes -- no matter what I say, they will assume the worst. Usually I find that if the child is verbal they will have assumed the worst -- usually days before we actually discuss it. Kids are much more tuned in to non- verbal communication than adults.
Q: How do [the kids] react?
A: Differently. The majority of kids that I've felt have really understood that they were dying have as their primary concern their parents and the other kids in the family. Many worry about how Mom and Dad are going to take this. "How are they going to live without me? Who's going to look after my little sister?" Very unselfish in death.
Q: Do they ask you about death or talk about it?
A: Some will ask what it's like, and generally what I do is ask them what they think it will be like and try to support any positive feelings they might have about it.
Q: When you tell parents that a child is dying, what kind of reactions do you get?
A: It usually will be at a point that is very obvious to them. So for most, it is just confirming what they've already concluded themselves. If it's over a long period of time, it's not that difficult for the parents to accept. In fact, many see it as an end to the child's suffering. "If it's going to happen anyway, I hope it happens quickly."
When the end comes quickly, it's obviously greeted with a lot of denial and questioning that we'd missed something. In chronic illness, such as cancer, the seed of that moment is planted the first instant we've delivered the diagnosis. It's something that has been there for often months or even years. We're not coming in with a crushing blow as much as a confirming statement of what they've known was going to happen all along.
Q: Where do you get the emotional strength?
A: I really enjoy the kids. Even a child that I know is dying is a child that I enjoy being with. I would hate to cut myself off from dealing with kids on a human level. My enjoyment comes from actually talking to them as individuals.
Q: Cancer is the second leading killer of children. Knowing that as many as half your patients will die, why did you choose pediatric oncology in college?
A: Something about it intrigued me. I felt that general pediatrics was too limited in terms of treating well people most of the time. Actually, where you really are involved in treating sick kids, a 50-percent cure rate is a fairly optimistic field. I point out to medical students that we're not in medicine to cure patients. We're in medicine to help patients. That's something that we can do all the time, whether they're cured or not.
Q: Is there anything in your personal background -- ?
A: My experience has been recent. My father just died of lymphoma. It allowed me to view everything from, as they say in the lectures, the other side of the stethoscope. The difference a caring physician can make in losing a family member is tremendous. You can't always cure people, but you can make it a little bit more bearable.
Q: What are the rewards of the job?
A: The rewards are either openly or implied -- somebody says thank you. That I made a difference, whatever happened. It does force me more than most people to put aspects of my own life into perspective.
When my father was dying, I think I was able to handle the loss of a parent much better than -- even most physicians -- but certainly most individuals. I was forced to deal with my own feelings about that frequently in the course of a year treating the kids. Most people are only forced to do that a couple of times in their lifetimes. It's one of those things that, unfortunately, practice sometimes does help in figuring out what's important in life.
The other thing is that on particularly bad days I go home and look at my kids and all the other problems of day-to-day life somehow don't seem that important.
Q: When did you first realize that children often know more about their condition than you think they do, or that their parents do?
A: Very early in my career in pediatrics when I was still a resident in training. It was in the observation that it was often the child parenting the parent. The explanation was that the child knew something very serious was wrong, but the child was trying to be brave and comfort the mother -- who was in tears. It's a pattern we see very often. The child is often strong for the parent, and is consciously assuming a different role in the relationship.
Q: Doesn't [your work] make you worry that the same thing could happen to your children?
A: You can drive yourself crazy worrying about things like that. In fact, I'm the opposite. Nobody in my family sees a doctor until it's quite obvious to everybody else who's not a medical individual that this person should be seeing a doctor. My kids are brought in a day late every time. Doctors in general have the attitude that this happens to everybody else. That's why they handle illness in their families so poorly. I play the odds and the odds are that most kids are healthy.
In general I don't trust doctors. I think most of us tend to do more than watch patients. Sometimes we overtreat, rather than watching it go. Because I deal with kids with such serious illnesses, I don't feel that the colds and assorted symptoms that every child will experience in the course of a year merit the tremendous medical attention that is given to that syndrome.
Q: What do you do when parents want to try some new discovery or unorthodox treatments?
A: I will never flatly exclude such an approach. I think when faced with the enormity of the child's death, people will often cling to unproven hopes in the attempt to prove the doctor is wrong. If we feel it will not interfere with treatment, and the family allows us to continue traditional treatments in addition, I will consent to do unorthodox treatments.
It's the parents who live with the child's death for the rest of their lives. Not us. Anything I can do to erase doubts that they will have after the child dies -- doubts whether I did everything I possibly could have to help my child live -- I think that's my responsibility as well.
When parents ask about second opinions or unproven therapies, we usually will go out of our way to help them achieve that input, because I know that five or 10 years later they will always be tortured with the question, "Should I have gone elsewhere?" Or, "Should I have just invested in a phone call to find out if such and such was true?"
Q: You must be away from home and your family a good deal. How does that affect you?
A: This last week our youngest was reacting to a measles shot. The older had strep throat and my wife had pneumonia. And I had to be in here at work. It was a little bit frustrating. They put up with a lot because of my career. Without family support it's very difficult. The other thing is that my wife will generally know when I've had a bad day because of how a child's doing. And (she) will walk around me a little bit. I've come to expect that.
Q: How do you think that you and your wife would handle the news that one of your children had cancer?
A: Like every other parent. What allows me to cope with it is that I really don't expect it to happen. And I don't think any parent expects it to happen. The thing that allows me to be a little bit more sensitive to what must be going through the parents' mind at the time that I'm delivering the news that the child has cancer is that I can just for the instant put myself on the other side of the table and imagine what news like that must be like. Subsequently, there is usually a tear in my eye when I say it.
Q: How do you relax?
A: I really can shut off work. Many people in pediatric oncology burn out. I can leave work at work more than most. One advantage is living in Washington and having to fight the traffic to get home. By the time I get home, I think work is 45 minutes away.
Q: Does your academic work ease the pain and the frustration of losing patients?
A: The only thing that eases the pain is in feeling that I made the pain less for the family. [Given] the reality of a child dying, the hypothetical difference I could be making is insignificant, emotionally. But I do like to feel that in some small way I helped the families through the experience. That's the only thing that helps in that situation. The rest is intellectual.