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When clinicians become patients, treatment journeys help shape their approaches to care
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Hollye Jacobs, RN, MS, MSW, has had to deliver bad news more times than she can count.
As an adult and pediatric hospice nurse, social worker and educator, she counseled and consoled hundreds of children and adults who struggled to come to terms with cancer diagnoses. She also taught medical students at the University of Chicago Pritzker School of Medicine on how to do the same.
“There’s a real art to it,” Jacobs told HemOnc Today.
Hollye Jacobs, RN, MS, MSW, an adult and pediatric hospice nurse, social worker and educator, documented her physical, mental and spiritual journey through breast cancer treatment in a blog called The Silver Pen.
Source: Photo courtesy of Hollye Jacobs, RN, MS, MSW, reprinted with permission.
Yet, no amount of training prepared her for the words she heard as she sat in a surgeon’s office in fall 2010, this time as a patient.
A mammogram and hand-held ultrasound revealed four lesions in Jacobs’ right breast and three more in her left. When the surgeon explained she would not be able to provide an official diagnosis until comprehensive pathology results became available 2 days later, Jacobs issued a plea.
“I’m one of those people who really like to know what I’m going to be told, before I’m told,” she said.
The surgeon replied: “I think I am going to tell you that you have breast cancer.”
Role reversal
As the surgeon outlined a treatment plan — immediate mastectomy, 3 to 4 months of chemotherapy and 6 weeks of radiation — Jacobs’ mind began to race.
How would her husband, who happened to be out of the country on the day of her diagnosis, cope with the news? How would she tell family and friends? How would she continue to be a good mother to her 4-year-old daughter?
Her ability to help others as they braced for similar difficult journeys led her to answer each question with the same six words: “We know how to do this.”
Not all clinicians who suddenly find themselves on the other side of the provider–patient equation maintain that sense of confidence.
Many struggle as much with the role reversal as they do with their disease.
Trained to remain stoic and maintain an appropriate emotional distance from their patients, some physicians are afraid to appear weak or vulnerable. Some find it difficult to relinquish control, micromanaging so many aspects of their care that it strains their relationship with their medical team.
Pamela F. Gallin
“We are the worst patients,” Pamela F. Gallin, MD, author of How to Survive Your Doctor’s Care. “We are the most challenging. The reason is that we know too much. Or, rather, we think we know too much. A little knowledge is a dangerous thing. We know that our treatment comes down to the judgment of another physician. That doctor will have to decide whether our diagnosis is 1, or 1A, or 1B. This is frightening to us, because we know that if that doctor makes the wrong choice, it could affect our entire treatment and outcome. We are control freaks.”
Another factor is diligence, said Gallin, professor of ophthalmology and professor of pediatrics at New York Presbyterian Hospital, the Edward Harkness Eye Institute and Children’s Hospital of New York Presbyterian.
“It is generally much better to have a diligent physician than a brilliant one,” Gallin said. “The best physicians are the ones who chase down every detail and account for every possibility. No matter how good the other physician is, we will always wonder whether he is as compulsive about the details as we are. We can’t know.”
A shared journey
Based in part on her experience at the bedside, Jacobs opted to document her physical, mental and spiritual journey through treatment — and now survivorship — in a blog, The Silver Pen.
“I believe that breast cancer happens within the ecosystem of family, friends and community,” she wrote in her introductory post on Nov. 2, 2010. “Consequently, I decided to take the holistic approach and write about breast cancer with style and a sense of humor.”
She did so because she wanted loved ones to hear about her experiences in her own words. Jacobs wanted to make sure she remembered the details of the conversations she had with her doctors, colleagues, family members and friends.
“Anytime you have an emotional conversation it is so easy to forget things,” she said.
Jacobs also wanted to share what she calls “silver linings” — the kind gestures, tender moments and pleasant surprises — that offered comfort, provided hope and helped her maintain a positive attitude.
She found the endeavor incredibly cathartic, and it continues to influence how she approaches her personal and professional lives.
“Cancer is as much an emotional journey as it is a physical journey,” Jacobs said. “Regardless of how sick I felt, I could always find silver linings. I still look for them every day.”
Work informs understanding
Jacobs used her medical training to guide her experience with cancer, but Mark A. Lewis, MD, used his to help diagnose a premalignant condition.
Lewis, assistant professor in general oncology at The University of Texas MD Anderson Cancer Center in Houston, was in residency at Baylor College of Medicine in Houston when red spots appeared on his face. Then, a day before his oncology fellowship began at Mayo Clinic in Rochester, Minn., he awoke with severe pain in his lower right side. He thought he had appendicitis, but tests revealed a high calcium level instead.
Mark A. Lewis
“It was almost comical,” Lewis told HemOnc Today. “Medical students are renowned for turning into hypochondriacs. Of course, I went to my primary care physician within the first month of my oncology fellowship and said, ‘I think I have a cancer syndrome.’”
Lewis expected to be ushered out of the office with directions to stay away from his medical textbooks for the rest of the night.
Instead, his PCP listened, smiled and offered reassurance, saying: “I think that’s unlikely, but we will take your concerns seriously.”
“I just wanted him to listen to me, and he did that,” Lewis said. “Frankly, his reaction was entirely appropriate. He said, ‘Let’s not jump to conclusions. Let’s look at the actual data.’”
The data proved Lewis’ instincts correct.
Tests revealed adenomas on his parathyroid gland. An ultrasound of his pancreas showed islet cell tumors.
Lewis — who had a frame shift mutation in chromosome 11q13 — was diagnosed with multiple endocrine neoplasia type 1 (MEN 1), a rare group of disorders that causes tumors in the endocrine glands.
The diagnosis meant Lewis’ personal and professional backgrounds meshed in a way he never imagined.
“In my first weeks of my fellowship training, I had been seeing patients with pancreatic neuroendocrine tumors who had a remarkably similar family history to my own,” he said. “I had just been diagnosed with high calcium levels. All the experiences and family histories of my patients sort of merged with my own experience and family background. I realized I had what they had.
“My work informed my personal understanding,” Lewis added. “I honestly believe if I wasn’t a cancer doctor, I wouldn’t have sorted this out and I would have been in the dark about what was wrong with me.”
A sense of empathy
Lewis and his care team continue to monitor the tumors on his pancreas to see if they grow or metastasize. So far, none have become overly invasive.
“I’ve chosen to postpone surgery as long as I can,” he said. “Time will tell if it is the right decision. It is similar to the discussion I have with my patients. What course to take? What treatment to take? There are short-term risks with the toxicity of chemotherapy weighed against the potential long-term benefits.”
Lewis said he is fortunate and does not pretend to understand “what it’s really like to have cancer.” Still, his experience has made him more empathetic when caring for patients.
“I better understand the fear and the uncertainty that patients deal with,” he said. “You come to the realization that there is a lot of risk to mitigate in oncology, whether taking action or choosing surveillance. There is a risk in treating and there is a risk in not treating. You have to be comfortable tomorrow with the decisions you make today. That’s the main thing I’ve learned, and that’s what I try to impart to my patients.”
‘A strange gift’
When Lewis received his diagnosis, he debated when — or if — he should broach the subject with his patients.
“You try to project that image of being a confident doctor,” he said. “Your patients are coming to you for treatment and information, and at first, I didn’t want them to have a mental perception of me as a sick and fallible person.”
He initially decided to avoid discussing his condition with his patients.
“As I got deeper into my training, I realized this was sort of a strange gift,” he said. “I now had the ability to really turn around a conversation and connect with a patient empathetically.”
He still saves the subject for certain circumstances, reserving it for when a patient ends treatment and enters a period of surveillance.
“I found that was the right moment to tell them,” Lewis said. “They worked hard to get to the point where I find myself right now. My diagnosis does not currently require any therapy. I’m watching and waiting to find out when I will need treatment, and that is the privileged condition that many of my patients have to work hard to attain. I found, at that moment, it’s helpful to confide in them about how to face an uncertain future.”
Lewis’ message often has more to do with emotional health than physical health.
“I can talk in very real terms about fear and how to manage it and not allowing it to ruin your life,” he said. “The worst thing for a patient is to fight through all the rigors of treatment and find themselves so paralyzed by the terror of a recurrence that they cannot enjoy the rest of their life. That’s what I want to prevent.”
He also revealed his diagnosis in an editorial that appeared in the Journal of Clinical Oncology in 2011.
“I was completely floored by the response,” he said. “So many people in the oncology community, often complete strangers, contacted me via email. Even within my own clinic, I was totally taken aback at the number of people I work with every day who either had a history of cancer or were dealing with cancer themselves, unbeknownst to me.”
A liberating experience
Krenie Stowe, MD, JD, had a similar experience.
Stowe, a pediatrician at Rayford Medical and Urgent Care Clinic near Houston, has practiced medicine for nearly 20 years.
When she was diagnosed with stage II breast cancer in February, she decided to share her diagnosis — and subsequent updates about her treatment — with her colleagues, her patients and anyone else who was interested.
“I was emailing 300 to 400 people regularly,” she said. “I’ve gotten incredibly positive responses. People begin to open up. They tell me, ‘I had colon cancer’ or ‘My mother had a certain type of cancer.’ I heard from people who had only spoken to their spouses about their cancer. There is a tremendous amount of secrecy in illness.”
Before Stowe began her six-cycle round of chemotherapy, she shaved her head. Some of her colleagues questioned whether it was appropriate for Stowe to be so open while working with children.
“I told them, ‘The kids need to know what’s up. I have the disease. I am taking medicine. It makes my hair fall out. I hope it makes me better,’” she said. “My journey was very much helped by the fact that I was so open. I found it liberating.”
Doctors treating doctors
Most clinicians do not know firsthand what it is like to battle a life-threatening illness. At the same time, many oncologists are unaccustomed to caring for fellow physicians.
Adam Boruchov, MD, a medical oncologist for the Saint Francis Hospital and Medical Center in Hartford, Conn., said he makes a conscious effort to talk with all patients the same way, even those with medical backgrounds.
That is because even doctors can struggle to cope with the emotional strains of cancer diagnosis and treatment.
“It is unfair to tell another doctor, ‘You know all about this’ or ‘You understand what’s happening,’” Boruchov told HemOnc Today. “Just because a patient is physician does not mean he or she is emotionally prepared for a diagnosis of cancer, and you should not assume they are up to date on the prognosis and treatments. They’re not thinking about what they learned in medical school.”
One of Boruchov’s most prominent patients is David Hull, MD, FACS, director emeritus of the transplantation surgery program at Hartford Hospital. Hull was diagnosed with lymphoma in 2008.
“He is a brilliant transplant doctor, but he deserves to hear the news in as simplistic terms as possible,” Boruchov said of Hull. “I encourage him to ask me to get more specific or speak in more detail if he wants. I do my best not to treat him differently than I would a nonphysician patient.”
After Hull’s diagnosis, he visited five nationally renowned cancer institutions for additional opinions. He was distressed by how he was treated.
“Two had positive attitudes,” he said in an interview. “I was surprised by the number of doctors who would frown, be negative or be unsupportive. I didn’t need any of that. I needed to get better.”
Hull eventually began chemotherapy in October 2008.
In 2010, Hull’s lymphoma became more aggressive, and he stopped responding to new rounds of chemotherapy. As much as he tried to maintain a traditional working relationship, Boruchov quickly realized Hull was no ordinary patient.
Hull was working full time, even as his health failed, and word of his condition began to spread.
“The hardest thing about treating David was that he is such a prominent surgeon in the Hartford area,” Boruchov said. “He trained at least half the surgeons at the local hospitals. I know a lot of those guys, so I would have surgeons coming up to me asking, ‘What’s going on with David? What’s happening with David?’ There is a lot of pressure taking care of such a well-known person in the medical community.”
To the brink and back
Hull was in desperate need of an allogeneic stem cell transplant, but he would not be a candidate until his cancer went into remission or at least responded on some level to chemotherapy.
“I don’t care what you do,” Hull told Boruchov. “I don’t care what trial you put me on, what drug I take, how sick I get or how long I stay in hospital. You get me in remission so I can get a transplant.”
The last round of chemotherapy Hull underwent proved successful.
He then received an allogeneic stem cell transplant, only to develop graft-versus-host disease (GVHD). The condition progressed to grade 4, stage IV steroid-refractory GVHD, which is associated with a survival rate of less than 10%.
As Hull went through treatment, Boruchov did not mention that specific statistic, but also was sure to never overestimate the slim chances of success.
“If you take away hope from a patient, they die,” Boruchov said. “There is often a fine line between being honest and maintaining hope. Sometimes those goals are not in alignment, but when the odds are against someone, you cannot focus only on the actual statistics. You hope there is a window, and you do everything in your power to get them through that window.”
Hull agreed to nontraditional therapies, including a drug Boruchov had evaluated in a study while he worked at Memorial Sloan-Kettering Cancer Center.
The therapy helped Hull beat the odds for the second time in 2 years.
Hull said his recovery affirmed his approach to caring for patients when both science and statistics suggest they have little chance to survive.
“Sometimes the outcomes are not there, and telling patients they are not going to survive is hard,” Hull said. “Most doctors have a problem with it. They tend to find others to take care of that patient and simply give up the relationship with the family. I have never done that. Certainly now, I stay with my patients and their families even longer.
“I’ve always been a passionate person, and I have always thought of myself as a doctor who spends a lot of time with my patients,” Hull added. “I feel less stressed about finishing up my day and heading home. I want to make sure my patients and their families are onboard with what we are doing.”
The experience also proved profound for Boruchov.
“If we didn’t have those kinds of patients who beat the odds once in a while, I don’t think any of us could be oncologists for long,” Boruchov said. “You live for these patients, and you love when you get them. That’s the kind of patient that keeps you doing your job. So many people don’t get through something like this. Once in a while a miracle happens. It really keeps you going.”
References:
Jacobs H. The Silver Pen website. Available at: www.thesilverpen.com. Accessed Dec. 12, 2012.
Lewis AM. J Clin Oncol. 2011;29:3103-3104.
For more inforamtion:
Adam Boruchov, MD, may be reached at Saint Francis Medical Group Inc., Cancer Center, 114 Woodland St., Hartford, CT 06105; email: aborucho@stfranciscare.org.
Pamela F. Gallin, MD, may be reached at Harkness Eye Institute, 635 W. 165th St., New York, NY 10032.
David Hull, MD, FACS, may be reached at Hartford Transplant Associates, 85 Seymour St., Hartford, CT 06106.
Hollye Jacobs, RN, MS, MSW, may be reached by email at hollye@thesilverpen.com.
Mark A. Lewis, MD, may be reached at Department of General Oncology, 1327 Lake Pointe Parkway, Suite 200, Sugar Land, TX 77478; email: malewis1@mdanderson.org.
Krenie Stowe, MD, JD, may be reached at Rayford Medical & Urgent Care Clinic, 25440 I-45 North, The Woodlands, TX 77386.
Disclosure: Boruchov, Gallin, Hull, Jacobs, Lewis and Stowe report no relevant financial disclosures.
Perspective
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Itzhak Brook, MD, MSc
I became aware of what it feels to be a patient. I am much more sensitive to what is going on in the mind of the patient and the family when they are in the midst of dealing with a serious illness. I think I was a pretty sensitive physician before, but I am even more so now. I spend more time and I put myself constantly in the patient’s shoes. I try to prevent doing the things I didn’t like about my care. I try to be more attentive and patient, and I explain everything. Again, I feel like I did this before, but I think I am better now at making the experience of getting care more tolerable and humane. I also realized that many of the residents who took care of me took the cues from their attending physicians, who were not always caring for the patient in the right way. I am trying to set an example of caring for the patient the right way, so the residents who eventually become doctors or specialists are better at caring for people.Perspective
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David Carbone, MD, PhD
Having cancer as a physician is both easier and harder than having it as a layperson. It is extremely important to have a trusting and confident relationship with your physician, and because I was working in the hospital where I was treated, I already had a trusting and confident relationship with them on many levels. I did not have to go through the process of acquiring trust. It was harder, however, because I deal with a malignancy each day with my patients — lung cancer — that has only a 15% cure rate. I have seen patients in the end of their course of life and I know how much they suffer. A lot of patients at the start of their course are blissfully ignorant of what lays ahead. I knew full well what happens to cancer patients once we cannot cure them. Then there’s another aspect: survivor’s guilt. Our current medical therapies for lung cancer are generally not curative. I am now 12 years out from finishing chemotherapy for lymphoma. The chances that metastatic lung cancer patients are going to be here 12 years later — although not zero — are slim. The guilt comes from knowing that I survived but I cannot do the same for all of my patients. However, I am always honest with them about their prognosis, and I tell them I will do everything in my power to get them to be in that fraction who live 5, 10 or 15 years.Perspective
Back to TopJennifer Kelly, MD, PhD
When I became a patient, I noticed a lot of things about physician care that I probably wasn’t aware of before. I have so many physical issues now because I am in the later stages of my cancer. At this point, I have a doctor for almost every bodily system. One of my doctors comes in the room and sits at the little table without ever making eye contact. He walks in with a really great plan with whatever is going on that week, armed with a little yellow sheet of paper. He’s got it all mapped out, but he has never once looked me or my husband in the eye. I realize that, being a physician, sometimes we deal with so many patients. It’s not always just about the sheer numbers. It is more that we have to guard ourselves, too. A lot of our patients get attached to us because we are sort of their lifeline. They depend on us for so much. Sometimes you have to be a little bit detached. But there is “being detached” and there is [this particular clinician]. He is not a bad doctor, but there were times he would come in, sit down, tell us his plan and get up to leave like we had no questions. I did have questions. I was on so many different medications. Should I take medication A before medication B? At what time of the day? Before I eat? After? The experience taught me a lot. Just listen — that’s basically what patients want.Perspective
Back to TopRobert Klitzman, MD
I interviewed 75 doctors who became patients, many of whom had cancer. Many believed they were compassionate to begin with, then were shocked by what they learned during their time as a patient. Many resisted the role of being a patient. One patient prepped her own chemotherapy until a nurse finally told her to stop. It is hard to give up the role of being a doctor. In becoming ill, however, they realized how they can help their patients. One clinician’s surgeon told him there was a 5% chance he might die the next day in the operating room. This patient told me he could not sleep that night. He realized later that his surgeon could have said, “There’s a 95% chance things will go OK.” This patient said he had never realized how those two bits of information are so different, even though they are statistically the same. Many physician patients also become much more aware of time. One doctor said he was shocked to be kept in the waiting room for 40 minutes. I asked if he ever kept patients waiting, and he said he had never thought about it. “Only now did I realize,” one doctor told me, “that to wait is to suffer.”Click Here to Manage Email Alerts