The Outlook Interview: Leilani Sanders Talks to Ann Mariano: Leilani Sanders, 35, cares for children poised on the thin line between life and death. She lives with the knowledge that nearly half the gravely ill or injured patients will die despite everything she and doctors at Children's Hospital/National Medical Center can do for them. Sanders has been a nurse in the hospital's intensive care unit three and a half years, much longer than she expected to stay. The pain, anger or depression she often feels when a child dies takes an enormous toll, but the rewards are great when a child survives against seemingly insurmountable odds. And when she has helped a family get through the tragedy of a child's death, she feels a sense of having accomplished something very worthwhile. Sanders works 12 hours at a time in stretches of three and four days so that she can have five-day weekends periodically. She needs the time to unwind, and to spend some time alone, to relieve the tension. Sanders completed a pre-med course at Immaculata College in Pennsylvania in 1972 and after graduation, took a job in biochemical research while applying for medical school. After two years in a "very boring job," she entered nursing school at Columbia University in 1974, planning to try again for medical school after graduation. But when she started working as a pediatric nurse in Babies Hospital in New York, she discovered she liked nursing so much she dropped the idea of becoming a doctor. Sanders was born into a Navy family in Hawaii and lived there as well as in Alaska, California and Maryland, where her family moved in 1963. She was graduated from Pollotti High School in Laurel in 1968 and returned to Maryland from New York in 1982. Sanders, who is unmarried, relieves the pressures of the intensive care unit with needlework and other crafts and combs the antique shops of Virginia, West Virginia and Maryland with her mother.
Q: Don't half of your patients die?
A: It's probably less than half. We will have really bad stretches where in one week six children will die. Then we'll go for three weeks and one won't die. It seems when they die, they die in a large quantity at once, so the numbers seem staggering.
Q: How do you feel when that time comes?
A: It depends on the situation. There are some children that have lingered and suffered so long and so much that to see them die -- it sounds kind of callous to talk of relief, but that's exactly what it is. With other kids we feel anger, extreme depression. The more you're bonded to the family, sometimes the harder it is. Sometimes your feelings of sadness and depression are more for the family than for the child.
I don't have any children of my own. But I have a six-year-old niece that I feel I love as much as I would my own child. And it's very difficult for me to take care of young girls in that age group. The younger nurses sometimes have difficulty with the older teenagers, I think because of the proximity of their ages. They're almost seeing themselves.
Q: Has this experience in the ICU Intensive Care Unit affected whether or not you will have children?
A: I still want to have children very badly, but working in the ICU makes you very aware of how precious life is and how much you should cherish every single minute with anyone that's important to you. If I were to have a child, I hope I wouldn't take one day for granted with them.
Q: When a child's illness is terminal and the child is conscious, how do you talk to them?
A: There are several variables. The child's age. The family's understandable reluctance or willingness to have the issue discussed. If you're dealing with an older child who can understand the concept of death and you have a family that's open to discussion of the issue, the easiest thing to do sometimes is to let the child guide you. Sometimes children are not afraid of death, or not as afraid of death as adults think they are. They're much more willing to ask questions and much more accepting -- as long as they feel that they are safe, that they have people that they love with them and they're not going to be abandoned. They're much more afraid of abandonment than of death. Parents sometimes are reluctant to let the issue be even discussed and that makes the child even more fearful because they have questions and not to be able to discuss them produces a lot of anxiety. If the family is open and the child knows that, they'll ask, "How sick am I?" Maybe the next day, it will get a little deeper. "Am I getting worse today?" They'll guide you.
Unfortunately, the problem is that if a child is able to speak, which means he's not on the ventilator and is dying, frequently they're not in the ICU. Our kids are usually on respirators, or unconscious. He might be conscious but barred from a lot of communication because of the ventilators. They just can't express themselves very easily. They have to write or find some other method of communication.
Q: What do you say to their parents?
A: It's much more difficult to talk to the parents. Some of them just never come to grips with it. It's like the differences in personalities and how they cope with life's problems. Some people are very open and right away will cry and ask you questions. Other people are stoic and refuse to let the subject ever be brought up. You see everything in there. That's one thing you have to understand as a nurse. You can never walk to a bedside and even begin to know what kind of situation you're going to have. The parents change from minute to minute, too. And from parent to parent. Mom might be feeling one way and the Dad is feeling another way. And Mom can only talk to you when Dad's out in the waiting room. Their interactions are phenomenal. Grandparents interacting. One parent wants to donate organs and the other parent is dead set against it. Sometimes all it takes is to ask a parent one question. It breaks down all the walls and they can just talk. But that too depends on the nurse's personality or how the parents and the nurse interact.
Q: Have you seen any miracles?
A: Yes. There are miracles. There aren't a lot of them. Most of the kids that get well in there, we can see the results of surgery. But there are a couple of kids that just shouldn't be walking around today. The one that stands out in my mind was a septic baby. She had a bad infection in her blood. She was at another hospital in the area and by the time she got to us, she was in a condition. She rolled in the door and we all kind of wrote her off. She had all the signs of any child that would be dying. It was truly a miracle. She's now a neurologically-intact and healthy child. It was one of those cases that really makes you stop and think, what if we hadn't kept treating her? But if a miracle is going to happen, maybe it will happen in spite of what we did or didn't do. Sometimes you don't know how these things are meant to be.
Q: What injuries affect you most?
A: Severe head injuries. We have the capacity to save many of these children today, but unfortunately many of them recover with very altered mental capacities. Some remain in nearly vegetative states. Do we have a right to do this, to keep a child alive who is no longer even aware of his environment? Also, the sadness. If a child comes in physically injured and leaves with physical handicaps, most people can adjust to that. But to have been a healthy child one minute and to leave the ICU six weeks later with severe neurological handicaps that will probably never change -- it's those kinds of cases that really make you ask yourself, "How much good did I do here?" You save their life, but is that life really meaningful to that child or family? Some families don't care what state they get the child back in. But you always have to think about 20 years down the road. How are Mom and Dad going to cope with this?
Q: How does it affect your family life? Your personal life? A: I don't have a husband and children. I don't know if I could work fulltime in the ICU and have a family. A lot of people do it but I think it would be very difficult. Maybe if I had a family, some of my thought processes wouldn't be so consumed with work, they would be more on my kids and husband, but I would be afraid that I would bring so much of that home. When I do come home I'm really glad I live alone because I don't want to see anybody. I just want to be alone. There's so much noise and sensory stimulation and having to deal with so many different personalities at work that when I walk in here, I'm glad there is no one here.
Q: How do you think you would react if you had a child that was seriously ill or injured?
A: It's a really scary thing. I think about my niece and what it would be like. The thing that comes into your head with a school-age child is getting hit by a car or getting hit on their bicycle. In fact, I actually have nightmares about her being injured. They're always critical head injuries.
Q: Do you ever hear about kids after they've left the ICU?
A: We have very little follow- up. Occasionally, a family will write to thank us or if some families have a new baby, they'll send us a picture. But as far as detailed follow-up about how families are dealing with situations, we get very little of that which is kind of sad because it helps to complete your feelings about a situation.
Q: How long have you been in the Intensive Care Unit?
A: Three years and three months. Every year the toll is a little greater, so you're never sure how much longer you can do it. Sometimes you go through a real low period when you feel like you just have to stop. Then something positive will happen and a lot of that is washed away. But your inside gets carved away a little bit, constantly. You might go through a long period where you have a difficult time bonding with the family. You don't feel like you've helped a family and the child dies and you come away feeling really empty.
Q: That's happened?
A: It happens frequently. Sometimes it's just a personality thing between the nurse and the family or sometimes families just don't know how to accept any kind of empathy or caring and shut you out. If you can't help the child or the family, then you really feel, "Why am I here?" But those situations happen less frequently than the situations where the families incorporate you into a situation.
Q: Is it what you expected?
A: I was a nurse for six years in New York and on a regular floor, an infant floor. ICU nurses have the reputation in every hospital for being very technologically oriented, very medical-oriented, not really into patients and families that much. When I went into the ICU, I went to learn technology. We're doing new things every day, trying new procedures and drugs and that's very exciting. I never thought I would stay because I felt that probably would be a very cold environment. It's not. Most of the nurses are very caring and get involved with their families.
Q: Why did you chose pediatric medicine?
A: I originally wanted to be a physician and I didn't get into medical school. I did biochemical research for two years, which I hated. I wanted to go to nursing school as a step to getting into medical school. When I went to nursing school, I fell in love with it. I felt the way my life had gone was fated, almost, because I would have been miserable as a physician. I have very little interest in doing the kinds of things that they do. I want the patient contact that nurses have and the kind of relationships that nurses form.
Q: What's an example of what doctors do that you wouldn't want to do?
A: Well, for instance, spending three hours putting catheters, IVs, into children. I like performing some technical tasks. But that's basically all they do. Then they walk away from the bedside. That's just not what I'm interested in doing. I like taking care of the child, not performing just technical tasks at the bedside.
Q: I noticed the doctors don't stay very long at the bedside. Maybe it's because they just have so much to do.
A: There are a couple of factors. Part of it is the workload. But I think physicians are trained from the first day they walk into medical school that their job is to cure people. I think it's particularly difficult for them, when they feel that a child might not survive, to spend a lot of time at the bedside because they see it as a failure. I've heard several parents make that observation, especially when they have very sick children. One mother said, "I could always tell when my child was doing well, because the physicians were willing to come to the bedside and speak with me. When he wasn't doing well, none of them came around."
Q: Do you think your patients' families understand what nurses are supposed to do?
A: I like people to make an effort to understand more about nursing. Part of it is the media's fault for displaying nursing and nurses the way they do in movies, on television. I don't know if you watch much television but all the nurses on TV do is stand at the nurses station like airheads and go get doctors. It's disgusting.
Q: What do you think people expect of you?
A: This is one typical experience. A nurse is taking care of this child. It was open heart, just got back from the operating room, critically ill. The child's grandmother said to the nurse, "Are you an aide, are you a trained aide?" or something like that. She had absolutely no concept of what it means to take care of a child anywhere in a hospital. She had absolutely no idea of the number of years of education that we have or how much we know or how important what we know is to the survival of those children. That's a typical example. Even my own family, when I went into nursing said to me, "Do you really just want to empty bedpans for the rest of your life?"
I must admit that I even didn't have a full concept of what nursing fully meant when I went into it. There's a tremendous lack of respect for nurses. How much time we spend at the bedside as opposed to how much time the doctors, whom everybody idolizes, spend at the bedside. There's this huge disparity between the amount of respect a physician gets and the amount of respect a nurse gets. The number of hours that they spend at the bedside is an inverse relation to the amount of respect they each have.
It's very frustrating to hear physicians constantly put up on pedestals by everyone. I'm not saying that they don't deserve a tremendous amount of respect. They work hard for many many years and their education costs them thousands and most of them are excellent clinicians. But they can't do what they do without us. Many a nurse has saved many a child's life by their observations, even by intervening where physicians have made errors. It's very upsetting to nurses to be taken so lightly and given so little credit and respect for what we do know.