When four women -- three doctors and a nurse -- found their roles reversed, they learned valuable lessons on how to better care for patients.
What happens when the doctor is the patient, when the caretaker is the one who needs the care? How do medical professionals sideline their instinct to diagnose, treat, discuss, dote — do what they practice each day?
Health complications and medical trauma pushed these women to shed their formal “Dr.” or “nurse” titles for Deanne, Sandra, Kay and Nikki. “I understand,” they tell their patients now, more sincerely than many of them know.
For years, Dr. Deanne Wilson-Costello focused on her career as a neonatal intensive care doctor at Rainbow Babies and Children’s Hospital, caring for very small, sick newborns, before trying to be a mom. She and her husband had tried for 14 years not to have children.
Then she gave birth to Anne, now almost a year old. “I used to think I knew a lot about neonatalogy,” Wilson-Costello muses. “Anne certainly taught me a lot.”
When Wilson-Costello turned 40 and wanted to start a family, her body was not as prepared as her mind. She went to a fertility clinic, where she was asked about her fears.
“My No. 1 fear was having a preemie,” Wilson-Costello says. “I worked with so many parents in the neonatal intensive care unit (NICU) who lived through nightmares. I had great respect for those parents, but I wasn’t sure if I was strong enough to do it myself.”
Wilson-Costello’s initial weeks of pregnancy seemed smooth. But the first ultrasound sparked concern. At 24 weeks, she was admitted to the hospital with high blood pressure. Then, after 27 weeks, she began bleeding from her nose.
Due two weeks before Valentine’s Day, Anne Costello was born at Rainbow just before Halloween: Oct. 29, 2004. She weighed only a pound and a half.
“She came out pretty much dead,” Wilson-Costello describes. She was born not breathing, with only a faint heartbeat. Doctors revived Anne in the NICU, where Wilson-Costello works. But she knew Anne’s situation was worse than most. “No one had a baby as small and as sick as mine,” she says. Anne spent three months in the hospital, fighting off a lung infection.
Wilson-Costello would work part time in the NICU, then tend to her preemie in the nursery while she was off-duty. She felt the broken-home feeling many mothers describe while waiting and worrying in the NICU. Sometimes, she wondered whether she could still do her job if she walked into the unit and discovered she was no longer a mother.
When monitors indicated baby Anne stopped breathing, Wilson-Costello reacted immediately. “My natural reflex was to put on my scrubs and start the code [for resuscitation],” she says. “I was a couple of minutes into it before I realized that the doctors were shooing me out because it was my daughter. It was more familiar for me to treat her as a patient than my daughter.”
Similarly, Wilson-Costello’s colleagues were more accustomed to treating her as a doctor than a mother. During an outbreak of a bowel infection while her baby was in the NICU, “A younger colleague came up to me while working and said, ‘I’m worried about this epidemic. It’s bouncing off of a lot of babies,’ ” she says. “I don’t think she realized my baby was in the NICU. We had worked for years as colleagues and friends, and then it was different.”
Wilson-Costello’s role as a doctor has changed since giving birth to Anne. Sometimes, in the first few months after she was born, when mothers saw Wilson-Costello’s stethoscope and smock and assumed she understood only the medical side of the NICU, she would knowingly reply, “My baby is in nursery nine.”
Now, she says, she considers the details of preemie care more carefully, such as how to transport a delicate newborn in a stroller with an oxygen tank and other devices preemies need to live. She is less rigid about when she allows babies to go home to their mothers. “My practice has become more gray,” she says.
She asks questions such as whether mothers have support at home through family, church or friends. She gives mothers an exact time when she will call with an update on their children, so they won’t be as anxious as she was. “My heart used to stop every time my phone rang. It’s taken a long time for that feeling to go away.”
The “little things” she used to slough off, she reminds herself now, are often the most important to mothers. “When I heard NICU nurses ask mothers, ‘Did you remember to do the bills?’ I used to think, How demeaning,” Wilson-Costello says. “Then, when they asked me the same question [while Anne was in the NICU], I was so thankful that they reminded me of that.”
Today, Wilson-Costello respects motherhood more than anything. “There is no greater profession,” she says. “They really have to live through it all and keep the morale up for everyone.”
Anne is now home and healthy. Her mother hopes she grows up to be a nurse. “I have utmost respect for the nursing profession,” she says. “If they weren’t directly responsible for my daughter’s survival, they were responsible for mine.”
Dr. Sandra Hazra
Dr. Sandra Hazra encourages her breast cancer patients to participate in clinical trials, reminding them that science can save lives. She watched it save her own.
Nine years ago, Hazra discovered a large lump in her breast during a self-exam. She knew right away what it meant. “When I felt the mass and the size, I already had assigned my own stage, and I knew I was in deep trouble,” she says. She knew the lump was a stage 3A cancer, which gave her a 50 percent chance of surviving for five years.
Hazra, an oncologist and hematologist at Akron General Medical Center and Barberton Citizens Hospital, realized she was no different than any of her patients.
She felt cheated.
“I was very angry, thinking, How could I get such a bad diagnosis when I have spent all my life caring for people like this?” Hazra says.
Hazra second-guessed herself. Frustration accompanied her diagnosis.
“When women would do a self-exam and say that a lump appeared all of a sudden, overnight, I would say, ‘Yeah, sure.’ But it was true. I found a lump that wasn’t there [before], and I could feel it getting larger and larger every day.”
Hazra entrusted her care to doctors at University Hospital’s Ireland Cancer Center. She checked in for her first treatment in December 1995.
She agreed to participate in a clinical trial. It would test whether chemotherapy before surgery would change the outcome of tumor stages and prevent women from needing a mastectomy.
Throughout three months of intense chemotherapy, Hazra wore a pump on her belt that fed medicine into her body for four days at a time. During each treatment, she was admitted to the hospital with a severely low white blood cell count. But the treatment was worth it: The chemo killed the cancer cells even before doctors removed them in surgery. After the surgery, she was cancer-free.
Following surgery, Haz-ra underwent radiation therapy and was prescribed Tamoxifen for five years — typical treatment for breast cancer patients. But while Hazra’s cancer was gone, so was her practice. When Hazra wanted to return to the hospital, colleagues told her that due to economic decisions, her services were not needed for at least two years. “To lose that was devastating,” she says. Her experience wasn’t unusual, she says: Almost half of cancer patients have to compromise how they want to perform their jobs after diagnoses of malignancy.
Meanwhile, after five years on Tamoxifen, Hazra agreed to another research trial that tested whether the anti-estrogen hormone Letrozole would help keep breast cancer from returning, even after the traditional five-year mark when therapy usually stops.
Hazra took a little orange pill each day, not knowing whether it was a placebo or a hormone that could save her life. “I was incredibly lucky,” she says. A doctor eventually called her to inform her that her pills were Letrozole. “The trial was stopped when scientists discovered that women on the real pill were having 46 percent less breast cancer returning,” Hazra says.
After this victory, Hazra answered a phone call from a doctor friend, who described a complicated clinical case that required Hazra’s expertise in oncology. Helping with the case inspired Hazra to push again for a new practice. This time, the administration at Akron General found a small office for her, and she opened the doors of her solo practice in 1996.
Some patients seek Hazra out for treatment, knowing of her battle with breast cancer. To others, Hazra only reveals her experiences with cancer when she gets the feeling patients might benefit from it, especially when they might be about to make decisions that aren’t in their best interest.
For example, Hazra will reach out to patients when she recognizes emotions from her own experiences — depression, discouragement, helplessness, loneliness. “[As doctors], we are taught to be objective,” she says. “But if I have a woman come in and she throws up her hands and says, ‘I can’t get through it,’ I say, ‘I’ve been there, done that. Let’s talk about it.’ ”
Sometimes, Hazra also tells her patients about her experiences with research trials, hoping to convince them of the importance of taking risks in the name of science.
Her patients turn to her for support; she can help whether she tells them about her own treatment or not. “Sometimes, I look at my patients,” Hazra says, “and I tell them, ‘I’m going to be there with you.’ ”
Dr. Nikki Helm
When Dr. Nikki Helm does rounds with residents or other doctors at MetroHealth Medical Center, she acts as though she is making personal house calls to patients.
She asks before turning off the TV. She makes sure she introduces herself when she arrives at the door. And when she departs, she makes sure water glasses and telephones on bedside tables are within arms’ reach of the patients.
“It’s easy, when you are rushing, to forget these things,” Helm says. She recalls how she felt answering the door to doctors and nurses during three separate surgeries to replace her right knee and elbow, and a fourth, recently, to have her left wrist fused with metal.
Helm, an infectious disease specialist, suffers from rheumatoid arthritis.
“You feel sort of infantilized,” she says, like many patients when they check in for surgeries. “We take away your clothes and tell you what to do and you are treated like a child. And consequently, I think you become more vulnerable to even minor comments that otherwise might not bother you.”
Helm says her struggle makes her especially sensitive to patients with physical limitations. “I’m more aware of the sense of frustration they feel not being able to do what they want to do, and how difficult it is to ask for help.”
Asking for help is especially hard when you are a doctor, says Helm, who also supervises residents and medical students from Case Western Reserve University.
Helm’s disease is not visible, unless one catches Helm taking the stairs rather than the elevator or sees her limp slightly on a bad day. But she can feel extreme fatigue and sharp pain in her hands, wrists, elbows, shoulders, knees and feet. In patients with rheumatoid arthritis, the immune system attacks and destroys joint tissue, leading to crippling fatigue and joint deformation in later stages, she explains. Her greatest work-related disability is not being able to type quickly on the computer, because her hands are stiff.
“Since my practice is internal medicine, I can do most things,” she says. “If I were a nurse or surgeon, my manual dexterity [problems] would prevent me from doing things that are more hands-on.
Medication, regular exercise and surgeries keep her healthy. Though she always feels background pain, unless it is severe, she proceeds with the day. “I’ve been very fortunate,” she says. “I have a lot of drive to get through things.”
Kay Anderson, R.N.
For 40 years, Kay Anderson held patients’ hands before they fell asleep for surgery, doling out hugs on occasion and always providing a personal touch.
Anderson is a nurse in the vascular surgery operating room at the Cleveland Clinic. She also is a three-year ovarian cancer survivor. Her shower-cap-style surgical uniform masked the balding effects of her therapy for 16 months while she did what she knew best.
“I cared before, but now I super-care,” she remarks. “You would want me to take care of your mom, your dad, your friend, because that is the kind of nurse I am,” she adds with confidence. “Knowing the care I needed when I was sick, I make sure I give the same treatment to patients today.”
“Super-caring” means tending to ailments of the mind and heart, not just medical matters. When a woman entered surgery to operate on a leg in which her blood vessels had collapsed, she cried and told Anderson, “You don’t know how it is to be sick.” Actually, Anderson had a pretty good idea of exactly how that felt.
So when she met patients with sunken spirits, she told them about the teal-colored ribbon signifying ovarian cancer that she wore on her bald head, hidden under her surgical cap.
Anderson doesn’t always talk about her extensive cancer therapy: six treatments every 28 days for eight months, followed by a hysterectomy and more drug treatments. She doesn’t want to breach a professional relationship she takes seriously. She is the caregiver, she reminds herself, wanting patients to rely on her for her medical expertise, not her personal experience.
But sometimes her roles as a caregiver and former cancer patient collide. Anderson knows the power of touch, the strength a hug can deliver to a woman who is scared to receive her first chemotherapy treatment.
She remembers a woman in her 70s who didn’t want to come into the room where Anderson was receiving her own chemotherapy treatment. “Everything was ready for her, but she couldn’t cross the door jamb to where the chair was in the room,” she recalls. Because Anderson was between doses, she asked the nurses permission to go to the rest room. She walked directly over to the frail, frightened woman wavering at the door.
“Can I encourage you to come in?” Anderson asked her. The woman hesitated. “I can give you a hug and tell you how hard it is, but you need to take the first step. That is the hardest part.”
The woman entered the room, and as far as Anderson knows, she completed her therapy. “She is not the only one I gave a hug to over these past three years,” she says.
12:00 AM EST
September 28, 2005