Left, Dan Thomas, 39, cabinetmaker and artist, Chicago, Illinois; Right, Jamie Van Roen, M.D., 46, oncologist and AIDS-treatment specialist, Chicago, Illinois

I introduce Jamie as the person who helped save my life. She likes to say that I did it all, but I know that it's not true. We did it together. One of the most important things Jamie did was give me hope, along with the facts. A person with AIDS has to know that there's a strong possibility of living.

Jamie was the person who told me I had lymphoma. My partner Tom had just died, and I was absolutely flattened by fatigue. I had put off getting an AIDS test because my insurance was not stable. My other doctor had been giving me vitamin B shots to keep me going, but I was still so exhausted that I couldn't even make it up the stairs. I was referred to Jamie, and she said she'd have to see if I had lymphoma. After the test, she was the one who gave me the news. With that, it was official that I had AIDS.

She was very good in the way she handled it. She talked about what we were going to do to fight the lymphoma, but she was also willing to listen to me talk. A lot of the time I needed to talk about Torn. It may have seemed like it had nothing to do with my medical care, but it had a lot to do with how I was feeling. That's the thing about Jamie. She doesn't just ask about your symptoms. She asks about your feelings and then she listens, because she actually cares.

But Jamie also reveals things about herself. I heard a little about her husband and her children. She also once told me something very touching. She said that she had never realized that two people of the same sex could love each other as deeply as Tom and I had. I knew she was telling me that to show that her attitudes were changing. She was willing to admit that she had had a preconceived idea about gay people and it was changing. I respected her for that and I took what she said as a compliment.

We also talked a lot about how far we would go with treatment. A lot of doctors don't know when to stop. Tom's doctor had tried everything to keep him going. He was on a ventilator for three months. The doctor just wouldn't let him go. It was terrible. Jamie believes in fighting, in fighting hard, but she doesn't try to deny that death can happen. She doesn't like it, but sheaccepts it as part of life. A lot of doctors don't, and I think their patients feel like they are letting them down if they get sicker.

When my, lymphoma came back, I was really upset. I think it affected Jamie too. She hugged me every time I saw her, and no matter how many people were in her waiting room, she would focus only on me and never rush through an appointment.

During the second round of chemo I got very discouraged. I was having a very hard time. At that point she gave me her home phone number and said I should use it if I had to. I did, twice. It was when I was really sick and I didn't know if I could go on. She was very positive with me. She told me I had come a long way and that there wasn't too much more to go. She made me want to be the poster boy for surviving with AIDS. I think it helped a lot.

Jamie's attitude also rubbed off on the hospital staff. It got so that the hospital was a sate haven for me. I think that's the way it's supposed to be. She would come in in the morning and we would talk about everything. She'd give me a hug before she left. I think she never forgot that I was a person underneath all the problems. She treated me like a person, not like a disease.

When you have a life-threatening illness, you want someone who is very, good at what they do, but can also function as a close partner. I mean, in that kind of crisis people get very close. Jamie has a way of doing that perfectly. Her medical expertise and our relationship saw me through two bouts of chemotherapy and many pneumonias. Now I've been stable for more than a year and I'm living evidence that you can live with AIDS. I've done it all with the help of Jamie. She's a tough little cookie, but a sweet one too."

Doctor
Born in 1952 and raised in the city of Chicago, Jamie Van Roen worked as a union telephone operator as a high school student. She interrupted her college education for a year of travel and study: French cooking in London and radical politics with Ivan Illich in Mexico. This life experience is one of two main influences that have determined her approach to the doctor-patient relationship. The other is her extensive work with terminally ill patients.

A small, thin woman with boyishly short and graying hair, Van Roen was interviewed on the eve of her departure for Geneva and the annual international conference on AIDS. Her office at Northwestern University Hospital was decorated with family photos and a little glass bull - a symbol of her tenacity - that was a gift from a patient. In college I studied special education and I helped to run a summer camp for disturbed children. That work was with a psychiatrist who was on the faculty. I loved the work, but in a way it wasn't big enough. I wanted more of a challenge, intellectually and academically, but I also valued human relationships. Medicine and oncology was the perfect fit. The science is exciting and ever-changing. But the doctor-patient relationship also means something. You don't cure people by addressing emotional issues, but you do make people feel better, make their lives better, if you treat the whole person.

In oncology patients have to make choices, and often they are choices about how they will die. I talk about that very early in our relationship because I know that when the time comes, they will have thought about it more. Most patients say that we should do everything that provides them with a reasonable quality of life. I tell them very specifically what intubation is, and what dying on a ventilator can be like. You can't talk, and you can't eat. And I ask them to identify someone who will make the decisions they want made when the time comes.

At the beginning most people say they don't want much done if they can't have a high quality of life. But quality of life at the beginning of their illness may mean being active, while quality of life at the end may be just being able to communicate. I want to have an open relationship so they can tell me that their thinking has changed. So they can tell me what they want.

There's an old adage in the hospice movement: Don't Just do something, sit there. That's how you establish a relationship. You sit with a person and you listen. You don't rush them out of your office. You listen to even the smallest things. And then, over time, they open up more and more. Everyone is more comfortable opening up to a friend rather than a stranger. I'm their doctor, but I'm a friend too. I care.

These relationships are real. And there is one case where we got so close that I couldn't treat someone. Dan came in to see me with lymphoma. I saw him through treatment. He went into retirement, like a lot of people with AIDS who I've seen- Anyway, we got pretty close. He and a lot of my, patients knew that I was about to adopt a baby. On the day that I went to pick up the child, the mother changed her mind. She backed out. I was devastated. Well, a lot of my gay patients sent me flowers when they found out. The first thing I do to try ~ to make the relationship real is teach them to complain. I tell them that I don't know what it's like to be the patient, to have cancer. It's a matter of control. Patients often feel like they have lost control of everything. I try to give it back.

Sometimes it's a small thing that matters to someone. I was with a guy recently who was into his first cycle of chemotherapy. He was hesitating before I examined him. I could see it. So we talked about it. I told him I would let him decide about taking his clothes off. He chose to do it, but it was his decision. That may seem like a small thing, but it wasn't for him.

There are big things, too. One patient comes to mind. I had seen him for years and we knew each other pretty well. We ran in similar circles. I saw him a lot at my favorite restaurant.

Anyway, he was the first one who asked me to help him commit suicide. We talked about it over several months. I remember 'visiting him at his house once. He was in the garden. He was blind from his CMV [a viral infection associated with AIDS], but he still enjoyed the garden, the sun on his face, hearing the birds. He never did choose suicide, and I wouldn't have helped him if he did. But he knew I wouldn't condemn him for considering it. I mean, I knew he could do it himself. You can find out about it in books. I wasn't telling him he couldn't make that choice. I respected his right to do what he wanted. In the end, it seemed like what he really needed most was the conversation we had about it-open and honest-over a long period of time.

AIDS taught me about the importance of being willing to touch patients. Most of my patients have been from the gay community.. There's a lot of openness to feelings, a lot of touching. And there's a real direct effort to deal with death on an individual basis. You learn to accept death as natural for everyone, and you accept that. Our lives are stories, really. Relationships and stories. All stories have endings. When someone dies peacefully, the way, they want to because they' were able to orchestrate it, that's a happy ending.

Learning to look at my patients' deaths this way is how I avoid burning out. You can't help people who are dying if you haven't resolved your own issues with death in your own mind.

'I go to the homes of my patients when they are dying. Usually patients and their friends and families want to show me that this person is more than the disease, that they have an entire life. People want to show me who they are and who they were. And they want to die in the same way they lived.

I remember one patient who said to me when he was doing pretty well that he wanted to die alone. Many months later he was in a hospice. I went to see him and we talked for a while. A lot of his friends were there. At some point he told us all to leave, go out for dinner. We all said good-bye, and while we were out he died, just like that. People have more control than you think.

When people don't have control it can be pretty horrible. I lost my father a year and a half ago. We were very close. When I was young he was the one I could talk to about anything, sex, anything, and even as an adult I spoke to him every day. He had gone into the hospital after a heart attack. He wanted to go ahead with a procedure, a catheterization. He wanted to try anything. The cardiologist called me and said, 'I'm more likely to kill him than help him, and if I don't, he's not likely to get any better.'

Now in a case like that I would be very honest with a patient. I'd say, 'There's really no way, we're going to help you with another catheterization.' But the cardiologist didn't tell my father that. So my father went through it. He spent the whole day hooked up to all this technology, and then he died in the catheterization lab. His whole last day was spent doing that instead of being with the people he loved.

In a way, the situation was caused by the doctor. A lot of doctors get focused on the disease and forget the person. Then whenever one of their patients dies it's a crisis, because they are not prepared to deal with the people.

It's about doctors taking care of people all the way through. You have to be honest and listen when they talk to you. I've heard colleagues say that when they are rushed they don't ask patients if anything is bothering them because they feel like they are running behind. But if you listen to patients from the beginning, establish that trust, you won't get overwhelmed by your patients later on. In fact, they don't call on you as much, they actually call on you less. They call less because they are confident that you will be there when they really need you.

People tell you everything, and they make very specific choices. When I work with them and they finally die, I can walk away saying I gave them everything I could in that relationship. That's how you avoid burning out.

It doesn't always work out. I make mistakes. One patient in particular comes to mind. It was a woman who was in hospice. She became comatose, but I knew it was possible to wake her up by simply treating her with fluids and calcium. The way I presented it to her husband he had no choice. He had to approve of it.

Looking back, I realized that I really wasn't sure that was what she wanted. I realized that in part, I woke her up because I wanted to say goodbye. And you know, when she did wake up, one of the first things she said was, 'What did you do that for?'

I've learned so much working with people with AIDS because it is such a sensitive subject. I realized that when I noticed there were times when I didn't want to risk saying that I was a doctor when I called for someone. That's when I found out that just saying I was Jamie, rather than 'doctor' was a good idea. The 'doctor' can also be a barrier to people. I only use it now when I want a reservation at a restaurant."