February 5, 2009

Walking In Our Patients Shoes

What we can learn from women health professionals who develop breast cancer

By Kenneth D. Miller, MD
Director, Connecticut Challenge Cancer Survivorship Clinic
Assistant Professor of Medicine, Yale School of Medicine

Medical professionals who become breast cancer survivors have unique perspectives on illness: they have seen it through the eyes of the healers they are, and they have experienced it as patients in need of healing. Profound insights often result from the blending of these vastly different experiences.

These women find themselves forced to transition from being confident caregivers in control of the care of others to vulnerable patients filled with uncertainty—often in the same settings in which they comfortably worked for years. In their new role, they replace their white coats with thin hospital gowns and wait for test results, just as their patients do every day. Fortunately for us, many come away from their experiences as better, more empathetic caregivers, and—also fortunately for us—they are often willing to share what they have learned on their journeys.

In relating some of the stories and the insights that these physicians, nurses, social workers, and other health professionals have experienced while “walking in their patients’ shoes,” and through sharing the revelations I myself have had while walking alongside my wife, Joan, during her cancer journey, I hope I can pass along some of the key lessons we can gain from this unique population of survivors.

We All Carry Baggage

Women health professionals bring a form of personal baggage to their own situations; their training brings both essential and unnecessary weight—knowledge that is useful and knowledge that sometimes hinders them. Many have cared for patients with advanced cancer or other diseases, so, when faced with breast cancer diagnoses themselves—even if very early stage—they tend to be unnecessarily pessimistic.

Carole Seddon, LCSW, of the Johns Hopkins Avon Foundation Breast Center recalls: “What went through my mind at work was Am I going to wind up in one of these inpatient rooms like my patients? At that time a woman who had been the director of nursing in oncology at Hopkins was dying from cancer. I walked past her room many times, thinking, Is this going to be me? I also expe­rienced a time of hearing the voices and seeing the faces of many of the bone marrow transplant patients who had died. It happened several times, with one face and voice after another, and I could not stop it. It didn’t last very long, but it was very clear to me that I was on the other side, no longer just the professional but also the patient.”

In Carole’s case, she was letting her professional “baggage” get in the way of a realistic and important sense of optimism. As patients we can take an important lesson from her experience and remind ourselves not to get overwhelmed by the baggage of our own past experience. Having lost a friend or relative to cancer may cause tremendous worry and pessimism when you receive your own diagnosis. But that friend or relative may have had a type of cancer and stage of diagnosis that was dramatically different from yours. In addition, if the loss took place years ago, treatment options available then were much more limited. The prognosis for women with breast cancer continues to improve, and optimism is important!

Don’t Be Afraid to Ask Questions

Breast cancer survivors who are health professionals tell us that others often assume they understand information about breast cancer better than they actually do. And because they are caregivers, they may be especially embarrassed to admit their areas of ignorance. The reality is that the clinical experience of an orthopedic nurse does not necessarily give her an understanding of breast cancer. And an ophthalmologist may know little about breast cancer beyond what was taught on the medical wards 20 years prior. These women report that their own doctors often open their explanations by saying, “As you know about breast cancer…,” when really, as newly diagnosed patients outside their area of professional expertise, they don’t know this information at all.

The lesson we can learn from these women is to not be afraid to ask questions and to speak up when you don’t “get it.” Understanding as much as possible about your diagnosis and treatment options is crucial because it will allow you to make informed decisions. Surgeons and other specialists may take for granted that you know a lot about breast cancer because you may have mentioned that you read something about it or because they assume you have already received the information from another doctor. If you hear a doctor or nurse say, “As you know…,” consider interrupting him or her and saying, “I don’t know—so please tell me!” If you don’t understand something, say so. Don’t hesitate to request a different or simpler explanation from your doctor. If you need him or her to draw a chart or use an analogy that you can better relate to, ask for it.

Share Your Feelings and Ask for Support

Some women in the healthcare profession describe the important need to express personal upset and how difficult their journey became when they weren’t given that opportunity or if their attempts were met with awkward or absent responses. Lillie Shockney, RN, administrative director of the Johns Hopkins Avon Foundation Breast Center, shares her experience when she was brought to the operating room prior to undergoing a mastectomy: “The nurses who were in the pre-op greeted me: ‘Oh, hello, Mrs. Shockney. How are you?’ The expression on her face was I feel sorry for you, and I am so thankful I am not you. It was just all over her face. The anesthesiologist was someone I knew, and she had been torn about whether to be my anesthesiologist. She was in my pre-op cubicle with me when I looked at my bra and said, ‘I will never be able to wear this again.’ She later told me, ‘I was speechless. I didn’t know what to say. I just stood there feeling like an idiot and not knowing what to say.’”

In Lillie’s case, when she expressed herself—sharing her sadness before her surgery—her colleagues’ response was awkward. But the fact that Lillie did say what she felt at that point was important, and the lesson here is that as a survivor you should know that it’s okay to tell people how you’re feeling. Your worries, your sadness, and your sense of loss are all important expressions of your feelings, whenever they occur. Your healthcare team as well as your friends and family may not always be able to provide you with quite the right response or comfort that you may need just at that moment, but sharing your feelings at least gives them a chance to try!

Sometimes it’s helpful for family and friends to know in advance that their support will be important throughout your cancer journey. If they know ahead of time that you are comfortable talking to them about these issues and that they need not worry about saying the wrong thing, they may be more comfortable in their support role. And don’t forget—sometimes it’s okay to just let people know that all you need is a sympathetic ear or a loving hug.

Concentrate on the Most Important Issue: Getting Well

We all wear different hats in our lives, as spouses, partners, parents, friends, and in our careers. Women often feel the need to be many things to many people all at the same time. Breast cancer survivors like Carole Seddon, from Johns Hopkins, tell us that during treatment it is important, and even necessary, to focus not on our careers (or whatever else might otherwise take precedence in our lives) but on being healthy. In Carole’s case it meant allowing herself to be a patient returning to good health rather than a social worker caring for others. One particular interaction with her surgeon allowed her to embrace her role as a patient: “One of the best things my surgeon did early on in treatment was to say to me, ‘You know, you can take your professional hat off here.’ He liter­ally said that to me, and I needed him to say it. I said to him, ‘No, I don’t know.’ He said, ‘You’re a patient here.’”

For women like Carole who juggle many roles, the lesson is to be a patient first and to put some of life’s responsibilities on a back burner during cancer therapy so that you can focus on getting well. In addition, Like Carole, other survivors might also want to take the opportunity to develop personal relationships with their physicians, oncology nurses, and radiation technologists. It is these human connections that help many survivors through the healing process.

The Importance of Humor, Positivity, and Optimism

There are some significant insights that woman health professionals who have had breast cancer share about the profound importance of positivity, hope, and even humor. Lillie Shockney shares her own discussion with her mother: “When I got fit­ted for my breast prosthesis, I took my mother with me. On the way I said, ‘Mom, getting a prosthesis is like getting a puppy. She’s going to be my bosom buddy. I’m going to take her everywhere I go, so she should have a name.’ We selected the name ‘Betty Boob,’ and I sent out adop­tion notices to these nurses and to my best friends that I had gotten Betty Boob.”

The diagnosis of breast cancer is unexpected and scary. Women have to navigate unfamiliar waters and be involved in decision-making that is complex. During my 20 years as an oncologist treating breast cancer patients, I have seen many women rely on humor to get them through some of the difficult times, to ease tension, and, ultimately, to heal.

Breast cancer survivors who are nurses and doctors, as well as their families, also remind us that optimism and a positive attitude play an important role. When my wife, Joan, was being treated for acute leukemia, I would come to visit every morning and tell her, “I hear a noise—it’s the leukemia cells popping; the cancer cells are dying and the healing has begun!” Positivity and optimism are powerful allies!

Unfortunately, breast cancer is an epidemic. More than 250,000 women are diagnosed with the disease each year in the United States. Some of these patients are health professionals. They face many of the same challenges as women in other occupations and some that are different. We are fortunate that many are willing to share their experiences of walking in their patients’ shoes so that we may learn from them. Many say that as survivors they are better able than before to impart hope­—a powerful prescription—to their own patients and that they have a renewed respect for each patient’s strength and individuality. One of the lessons I learned as the husband of a cancer survivor that I share with my patients is that there is no one right way to go from sickness to health—there are many right ways—and that different women make different, wise choices.

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Tags: Breast Cancer, Uncategorized