I never expected to outlive my breast cancer surgeon. But almost a year to the day after we first met, Dr. Jeanne Petrek died in the most random, ironic of accidents, hit by an ambulance as she crossed a busy New York street on her way to work at the Memorial Sloan-Kettering Cancer Center.
When I first met Dr. Petrek in April of 2004, my life had gone from that of a happy, 36-year-old newlywed to a terrified breast cancer patient in less than a week. The previous month, my husband and I had been talking about starting a family; now, we wondered if I'd live to see my 40th birthday.
All our news had gone from bad to worse -- until we met Dr. Petrek. Despite her international reputation -- she was a leading researcher and the director of the breast surgery program at Memorial Sloan-Kettering in New York -- she made us feel as if I were her only patient. As she outlined a plan of presurgical chemotherapy, followed by a lumpectomy and radiation, we felt ourselves absorbing her calm confidence that I could beat this.
Over the next year, I grew to recognize Dr. Petrek's cell phone number on my caller ID, as she returned calls well into the evening when I was worried about an MRI result or upcoming surgery. She rejoiced with me when the chemotherapy wiped out the tumor, calling the results "remarkable." And just a month ago, she happily signed the health form required for us to begin an adoption, writing in the margin, "She will make a WONDERFUL mother!!!"
After her sudden death, I was bereft -- and so were thousands of other women Dr. Petrek had treated. Within hours of hearing the news, emails and message board posts began flying: How could this be possible? We'd lost one of our greatest advocates, a doctor who'd fought not only to save our lives but to advance research that made our lives better after cancer. What would we ever do without her?
Losing a doctor is difficult for anyone. We all struggle to cope when the family doctor retires or your pediatrician moves to another state. But it's all the more devastating when your doctor dies, particularly if they've helped you face a life-threatening or chronic illness. "I have had a wonderful internist for many years. If she died or even retired tomorrow, I would be heartbroken," says Mary Jane Massie, MD, an attending psychiatrist at Sloan-Kettering, who has talked with many of Dr. Petrek's current and former patients since her death. "But she didn't treat me for cancer or multiple sclerosis. That's a very important relationship."
"It's a really personal loss, especially because of what we psychologists call transference -- the belief system we put on the doctor about what they can do for us," agrees Susan Brace, RN, PhD, a psychologist in Los Angeles, who frequently counsels people with serious and chronic illnesses. "It's almost like losing a family member. And if we have a long relationship with the doctor, it's even harder, because of how well they know us and our condition. Starting from scratch is an awful thought."
Alice Wong, a sociology research assistant at the University of California-San Francisco, never imagined she would lose her doctor. For seven years, pulmonologist Michael Stulbarg had helped her manage breathing problems resulting from her muscular dystrophy. In April of 2004, Stulbarg died suddenly of liver failure due to a chronic bone marrow disorder.
"I was devastated. He was a constant in my life. Every visit counted and he was always trying to come up with new options that might help me," Wong recalls. "I kept thinking, 'What's going to happen when I get really sick, and there won't be someone who knows me, who'll go the extra mile for me?'"
For Wong, it helped that Stulbarg's practice reassured his patients that they would be referred to a close colleague. "My doctor now was not only a colleague of his, but a good friend, too," she says. "We talk about him, and that helps me a lot -- to know that other people miss him, too. It helps to have somebody who knows my relationship with him, and knows I expect the same level of care."
Finding a doctor in the same practice, or who had a collegial relationship with your previous physician, can be an enormous help both in processing your grief and in feeling that your care will remain consistent. Rachel Falls lost her psychiatrist of four years just as she was struggling with whether or not to pursue chemotherapy for a brain tumor. Fortunately, not long before, her doctor had established a relationship for her with another analyst, and the three had begun working together.
"Sometimes I wonder if he did that because he knew he wasn't in good health," she says of her doctor, who had had bypass surgery not long before his death. "It's really wonderful to have a therapist who understands how much you miss your former therapist, and knew him and misses him himself. It's been a gift to me to be able to talk about that."
Irene Hall, another of Stulbarg's patients (he treated her for pulmonary hypertension), reports that her greatest support has come from another former patient. "We both felt that if we indeed got to the last stage with our illness, we wanted him there with us, and no one can replace him," she says. "It helps to talk to someone else who feels the same amount of grief you do, because you realize that it's a normal thing."
How else can you cope, emotionally and practically speaking, after the loss of a doctor?
- Write a letter to the doctor's family, telling them how important the person was to you. "If you've ever lost anyone you loved, you know how much it means to hear what they meant to someone else," says Massie. "To share that with your doctor's family can be therapeutic for you as well as for them."
- Use a journal to get out your feelings. "I think a journal is a good place to put your fears: 'I'm afraid that because I don't have Dr. Smith, I won't be able to be cured,'" says Brace. "That's not necessarily the case, but it's a fear that you need to express."
- Seek out a "grief group" at your hospital or treatment center. You may find that an existing support group temporarily turns its focus to the loss of a shared physician; if not, ask a social worker or staff psychiatrist if something can be arranged. Online support groups can also be helpful.
- Acknowledge the discouragement that comes with trying to build a new medical partnership. "Face it and get power over it by naming it -- like Rumpelstiltskin," says Brace. "Yes, you're discouraged, tired, and you have to do things all over again with a new doctor. Realize that you don't have to do it today, but you do have to do it, because your well-being depends on it."
- Talk with your new doctor about your feelings -- and remember to give her a break. Of course, you should feel free to find another physician if the two of you don't mesh, but try to be honest with yourself about whether the relationship truly isn't working or if it's just that the new doctor will never be your old doctor.
- If your fears or grief are overwhelming and begin to interfere with things like sleep, work and family, find a therapist or counselor to help you work through them.