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Fellow Suffering

From Paoli Hematology-Oncology Associates, Paoli, PA

Address reprint requests to Jennifer Armstrong, MD, Paoli Hematology-Oncology Associates, 21 Industrial Blvd, Ste 103, Paoli, PA 19301; e-mail: jarmstrong{at}msbx.net

I was unable to feel the loss of the September 11th World Trade Center tragedy. While the rest of the nation and half of the world mourned, grieved, and commiserated, I remained uncharacteristically detached from the devastation of this disaster. I was embarrassed and perplexed by my distant response. But I was entrenched in a different war. Whereas the rest of New York felt close to Ground Zero, to me it seemed almost ephemeral. Being a first-year Oncology Fellow at a cancer center in New York City at the time, I was immersed instead in the daily and recurrent devastation overwhelming the lives of my patients. For the previous 2.5 months, I had already been surrounded by death, dying, and suffering. The pain, anguish, fear, and dismay I had been encountering on a daily basis since starting fellowship had touched me deeply. But it took me almost a year to start to process the pain and to understand its impact.

During my first month of fellowship, we lost 10 patients. Two of them haunt me. Paul was 28 years old, newly married, with relapsed lymphoma. I observed him as both an inpatient and outpatient. His cancer progressed through two additional chemotherapy regimens and one investigational protocol. We told him we had no further standard or investigational agents to offer him. We continued to treat him palliatively with steroids until he developed aseptic necrosis of the hip, which ultimately left him wheelchair-bound. We never discussed hospice or end-of-life goals. I learned months later that he had died at another institution seeking more therapy. I do not know whether that other institution discussed end-of-life issues with him.

Liz was a 21-year-old woman with relapsed anaplastic large-cell lymphoma. She was deeply religious and had faith that God would spare her. When she did not respond to additional therapy, we tried investigational therapy without success. She became increasingly weak and dyspneic from lung involvement, and she suffered severe pain from compression in her neck from a large cervical node mass that caused her head to remain turned to one side. Her attending physician felt that the patient did not want to discuss hospice. I sat with Liz one afternoon, holding her hand, until she spontaneously told me she did not want "heroic measures" (artificial resuscitation). Her nurse overheard this and asked more probing questions. It was this senior nurse who ultimately told the attending physician about Liz's wishes.

The next month, I met Tom and his mother. Tom was undergoing stem-cell transplantation for poor-risk testicular cancer at the age of 18 years, having already relapsed after standard therapy. Tom was always pleasant and polite. He never complained. On the morning of his stem-cell transfusion, his mother took me aside and asked me about potential side effects. "I worry about my boy," she explained to me, in apology for having asked me to repeat a discussion she and Tom had already heard and understood well.

"He's a good kid," I responded.

She proceeded to tell me that the secret was athletics. "I have three sons. They all played on one sport team or another. It gives them discipline, makes them good boys."

"I suspect their mother had something to do with that as well," I replied, to which she smiled sheepishly. I patted her shoulder, and she patted mine back.

Next door to Tom, I met Mr W. He was a 72-year-old man with prostate cancer metastatic to the bone. He was admitted for pain control for the fourth time that year. His wife and daughter alternated shifts at his bedside, including overnight stays. The more gruffly he spoke to them, the more grumpily they spoke to us. We were not controlling his pain well, and he was suffering. The team dreaded entering his room. He died that admission, still in pain, despite our efforts.

Mr S. was a 44-year-old man with larynx cancer. He was receiving combined radiation and chemotherapy and was miserable with severe mucositis and delayed emesis. His wife told the team one day, "This is why people dread hearing the word ‘cancer.’ This is what they fear. And they can't even imagine."

In the beginning of September, I rotated onto a third inpatient service. In the first week, we lost two patients. Sarah was a 38-year-old mother of three daughters. She had lost her mother, a sister, and two aunts to either breast cancer or ovarian cancer. She had been the first in her family to be tested for a genetic mutation and was found to be positive for BRCA1. She was in the hospital with end-stage breast cancer involving the lung, liver, and now brain. One wall of her hospital room had been covered with a collage of pictures of her family, many of her and her daughters together over the holidays, on ski vacations, always smiling. The family was radiant. During her final week in the hospital, she was no longer responsive. Each day when I checked on her, I held Sarah's hand and looked at her face to make sure she did not show signs of agitation or pain, and I would stare at the pictures on the wall.

The other patient we lost that week was a 69-year-old Manhattan socialite with breast cancer metastatic to the bone, brain, and now liver. She had been receiving treatment for almost 8 years and had recently undergone whole-brain radiation rather reluctantly. She did not want to die, but she did not want to live if she could not continue her active social life. Her new liver metastases had proven resistant to the few remaining chemotherapy options we had for her. She was running out of options, and she and her daughter understood the situation well. Her daughter followed me out of her mother's room one morning. She was beautiful and confident but momentarily hesitant. I answered a page while she found her voice. When I hung up, she was by my side in the hallway. Before I could be paged again, she blurted, "How does one die?" Two months earlier, I would not have been able to even start to address such a question. I still had no good answers. But I responded, "I think the same way that one lives." She nodded agreement, "With grace, with dignity, in my mother's case." And she went back into her mother's room.

The next week was the week of September 11th. I rotated on one more inpatient service in October before spending 2 months in outpatient clinics. By that time, my newborn baby was 6 months old, we had settled in New York, and we were adjusting to the new rhythms of our life. It was only then that I was able to rejoin the rest of the city, nation, and world, as the tragedy of the attack on the World Trade Center percolated through our lives and consciousness. It was only then that I was able to reflect on my experiences, my responses, and my capacity to deal with the issues of pain and suffering.

I found colleagues to talk to about the process of learning to care for patients with cancer. I read about programs that had been designed to aid in this process.^{1, 2} This prompted me to suggest to our administration that fellows might benefit from a forum to discuss these issues. I found mentors, and we spent the next year designing the Fellows' Forum, which we launched at the end of my second year of fellowship (by which time I had undergone formal training in leading workshops).³

Twice a month, we invited the medical oncology fellows to a lunch-time forum to discuss the psychosocial aspects of clinical oncology.⁴ We encouraged fellows to share any clinical encounters that had remained with them for more than 24 hours. The sessions were cofacilitated by me and a fellow in psychiatry, with supervision from an attending physician in psychiatry. The initial sessions were gritty. Fellows appeared in great numbers and recounted stories about patients they had cared for who had stayed with them for months or even years. One fellow explained the outpouring as, "We're thirsty for this venue."

Themes quickly started to recur, and eventually, attendance started to dwindle. It was at this point that we paused and specifically asked for feedback. It was suggested that, although rehashing emotional situations had been initially therapeutic, to continue to benefit, skills needed to be taught. That is, whereas understanding each other's coping strategies was helpful, specific tools were being requested. In response, we developed a curriculum to teach concrete tools to use in clinical oncology.⁵

We designed a curriculum around the following 10 difficult discussions that physicians frequently encounter in clinical practice: breaking bad news, transitions in care, offering end-of-life care, enrolling patients in investigational studies, error disclosure, alternative medicine as a model for negotiation in clinical encounters, spirituality, family discussions, and a final session on physician stress, burnout, and renewal.

Once a month we invited master clinicians, who were identified for their expertise and publications on each of these topics. After a brief didactic, cases were discussed and role-play was used to model effective communication skills. Two weeks later, the Fellows' Forum would meet (without a speaker) and discuss the session and the topic and give time to share other issues and/or cases the fellows were encountering.

One issue that arose frequently was that fellows needed to build skills that could continue to be used throughout a professional career. The workshop emphasized concrete tools in the form of communication skills to enable physicians to better care for their patients.

The dissonance between the events of September 11th and my reaction to them was a watershed of realization for me as to how overwhelming it can be to care for cancer patients. There are descriptions of master clinicians who learn not to withdraw from their patients' fears, suffering, and distress, but rather to stay with them. During the most emotional of times with their patients, these doctors allow themselves to share their patients' suffering, while still protecting themselves at some level. This rarely taught art, one critical to the sustenance of compassionate care, has been previously addressed in this series.⁶

My goal is to never lose the ability to feel others' suffering. In September of 2001, I failed that. I had become consumed by the issues I was addressing at work to the point where I had nothing in reserve for the rest of the community around me. I maintained compassion for my patients but at great cost. Through the workshop we developed, my peers and mentors demonstrated a range of coping skills that physicians use in this effort. The importance of venues for communicating, discussing, and sharing these issues seems to be as vital for fellows, oncologists, and other healthcare providers as much as it is for patients and their families.

Author's Disclosures of Potential Conflicts of Interest

The author indicated no potential conflicts of interest.

NOTES

Authors' disclosures of potential conflicts of interest are found at the end of this article.

REFERENCES

1. Maguire P, Booth K, Elliott C, et al: Helping health professionals involved in cancer care acquire key skills: The impact of workshops. Eur J Cancer 32A:1486-1489, 1996

2. Jenkins V, Fallowfield L: Can communication skills training alter physicians' beliefs and behavior in clinics? J Clin Oncol 20:765-769, 2002[Abstract/Free Full Text]

3. Training the Teachers Workshop, led by Dr. Peter Maguire. Cancer Res UK Psychological Medicine Group, University of Manchester Christie Hospital, Manchester, England, June 2003

4. Armstrong J, Shim J, Lederberg M, et al: Fellows' Forum: A workshop on the stresses of being an oncologist. J Cancer Educ 18:32, 2003 (abstr 79)

5. Armstrong J, Reznik I, Lederberg M, et al: Fellows' Forum Difficult Discussions: A workshop on the stresses of being an oncologist. Presented at Am Psychosoc Oncol Soc 2004 Meeting, Orlando, FL, 2004 (abstr 1240A14713)

6. Steensma DP: The narrow path. J Clin Oncol 19:2102-2105, 2001[Free Full Text]

Submitted July 15, 2004; accepted July 27, 2004.

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