Cancer, families and physicians (book excerpt: A Lion in the House)

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Jen was five. It was in the fall of 1996, I guess, and she started having ear infections again. She had tubes in her ears, but she started getting fevers with the ear infections, which is kind of unusual, but yet, nothing alarming. Then January of 1997, she started getting lethargic, just not herself, tired, taking naps. She's always been a nap person, but still -- she started getting one ear infection after another.

We knew she was really sick for about four months. We knew something was wrong. We kept taking her to the pediatrician and they would keep sending us home. "It's a virus. Go home. She's fine." We'd say, "No, wait a minute. Nobody in our home has a virus. She doesn't have any symptoms of a virus other than a fever."

When we finally got the appointment with Children's (in Columbus), we met with the chief of hematology and oncology. He said, "Guys, you aren't thinking this is something serious are you?" We said, "Yeah, we think there is."

He says, "Well, we can do a test. We can do a bone marrow test if you think that you would feel more comfortable with that. It's kind of painful." [Husband] Frank and I are like, "Yes, we need to find out." So he did the procedure and he told me, "Folks, go home." I remember that this was the day after Mother's Day. She was sick on Mother's Day with a slight fever.

So we were home. She wasn't feeling well and had a fever that day. She was sitting on this chair with my husband in the family room, and I got the call two hours later. The doctor was shocked. Here he had just sent the parents home two hours prior saying, "It's nothing, it's very minor." Jennifer did not present a typical diagnosis. She wasn't bleeding. She wasn't bruising, but still, we knew something was wrong. He said, "She has leukemia. You need to come back downtown to the hospital."

I just remember that car ride. I was in so much shock sitting in his office. He said to me, "Do you work full time?" I said, "Yes." He said, "Well, you are probably going to have to take a leave of absence." I said, "What?" He said, "She's going to be in treatment. Where do you work?" I said, "The attorney general's office." He said, "Oh, my son is assistant attorney general in Massachusetts." I was thinking, I don't care! You just told me that my daughter has cancer! I don't care!

Jen was just scared. She didn't feel good. She was so tired. We really tried to keep it together for her. You just have to do that for kids, you know? She would do the treatment and go through all this and have a smile on her face. I cried a lot, but tried not to in front of her.

It was so hard for me, the first week, when she was in the hospital in Columbus (where the family still lived) and her pediatrician was in China, the one that had seen her, and her partner would come in, and it was really hard for me to be civil to her. Not only did they miss it, but they just kept dismissing me. They just didn't listen to me as a parent.

And I really think that you know. If your child is just laying around all the time, you know. You know it's not normal. We didn't know anything about leukemia. At that point you are even so shocked to hear any statistics or anything about it that it just kind of goes in one ear and out the other. You can't absorb all that at once. You are just not ready for everything at that point.

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In this next excerpt, pediatric hematology/oncology physicians discuss their relationships with the patients and families.

Frederick Huang, MD: The culture of medicine nowadays mandates that we inform our patients. We have become much more open in letting families know what they are buying into for their child.

When I sit down with families, I still struggle to this very day to figure out the best balance between not giving them enough information versus saying, "If you are going to agree to all this medicine, then you need to agree to every little side effect, rare or common, severe or minor."

What may happen is, it will overwhelm the parents. There are wonderful studies that show that parents getting news like that retain very little of what they are told. They may nod and smile and repeat back what they have heard, but they truly did not understand. Repetition is the key. So I go over that the first time and make sure they understand the really big side effects, and quickly go over the more rare side effects, and then repetition, repetition, repetition. The more they hear it, the more they will remember, understand it, and put it in context.

I am a big believer that the patient-physician relationship is very much about the personal relationship.

The oncologist is the team leader. I make it my point to be informed about what is going on, so when I go to the parents, I can tie it all together for them about what is going on with their kid.

One of the joys for me as a pediatrician is that I do get to work with families. To me, that is very gratifying. It is how health care ought to be, that whole-family approach.

Theodore Zwerdling, MD: This work allows you an intimacy that very few other areas of medicine allow. You can deal with people pretty much as they are. You don't have to worry about what they think you're going to be, what you're supposed to be, what you're supposed to look like. You can come in and sit down and discuss things with them, and you get to know them really well in an extreme situation. So a lot of the blinders, a lot of the facades that people have, are not operating because their child is affected with something that is life-threatening. And because you're going to be with them for a long period of time.

Dealing with cancer is a long-term commitment. When we take care of somebody we will take care of them for many years, or for the rest of their life. So we really get to know the children and the families and the patients. You have to be careful. There are times when you have to remember that you're the physician; you're not a buddy. This can be a big problem with physicians and nurses, to know where the boundaries are. You're there to make medical decisions, and to communicate with them in a manner that people understand, and in a compassionate manner. But you're not there to be people's friend -- and that means making difficult decisions, unpopular decisions.

When you're in the hospital for a long time, you can have a group of people who are going in one direction and twenty-four hours later the direction can be completely different. Especially at the resident level, it's very difficult for parents at a teaching hospital to have to put up with all the personalities, all the changes. Pediatric oncology carries a lot of baggage with it and not everybody is suited to deal with the intensity of the situation. A lot of times that comes across as being abrupt or being cold. Most of the time it's not. It's just lack of experience and anxiety on the part of the physician who is caring for a very sick child.

When you come out of medical school, you really have a maternal model of looking at things. You are providing information, you are providing care, you're treating people, you touch them, you ask them intimate questions. As time goes on, I have become much more of a person to provide information and help people make difficult decisions, but not as a mother or a father or a friend would. More somebody who has a particular expertise that can allow decisions to be made, but not to be demanding or overpowering.

So I think there's been a huge change. Actually I feel much healthier about it. There's a lot less burden. It's not us making the decision -- "This is what you will do." It's us helping you get to a point to make a good decision for your child. So there's not the burden of being always right, always all-encompassing. Some of it is part of the new consumerism. People want to be part of a decision-making processes. They want to take command and control of some things. To a degree, I think that is beneficial because it allows everybody to work as a team, as a unit. However, sometimes it swings too far and parents try and dictate. It happens, and it happens more and more as time goes on. It's hard for families to know exactly how and at what level to be making these decisions. It's not just reading a Web site, which some people think it is.

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On confronting the end of a child's life:

Cynthia DeLaat, MD: What I have always told parents is just to trust their gut about what feels right. We try to present options, from very aggressive to doing nothing to everything in between that may be a benefit for their child. If they keep coming back to, "I want to do everything possible" then that is what we need to try to do, if it is something that has a chance of working and benefiting their child. You don't just keep pulling drugs off the shelf to do something. I have had children live six months in situations where I never predicted that. I think parents end up making the right decisions.

Another thing, I know when the child cannot be cured the parents have to be there to pick up the pieces of the rest of their lives when the child dies. They have to feel they did what was right for their child. They have to be at peace that they did what was best for their child, no matter what the outcome. I think kids know for the most part that they are going to be okay when they die. I think they are most concerned about what is going to happen to their parents and their siblings because they know they are not going to be there.

Some of the most challenging, heart-wrenching times for me is telling a teenager that they are not going to survive their illness. You don't have a conversation like that with a four or five year old. It is hard when you have to sit down with a sixteen year old and tell him that this is the third time your cancer has come back and we don't have anything that is going to cure you.

We never got trained in this. I sought out advice from chaplains and psychologists that I got to know over the years. You do learn from experience, but it is something that I think you can always do better.