The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit jco.org and search “Art of Oncology.”
The inbox of my work e-mail was neatly organized into folders—an attempt to keep some semblance of control over my life as a hematology-oncology fellow in a busy academic medical center. Recently, with my training near its end and with the knowledge that I would be leaving the university, I decided to clean out the thousands of e-mails I had accumulated. At first, I found this easy, clicking the “Delete” button again and again with a growing sense of satisfaction and accomplishment…until I reached the “Patient e-mails” folder.
Daniel M. Geynisman, MD
I found myself staring at hundreds of e-mails with familiar names. No different from tombstones at a cemetery, these e-mails were neatly lined up, organized by date and a few subject words. I clicked the “From” button, rearranging the e-mails by sender, and suddenly, the stories returned. KV (cholangiocarcinoma): questions about pain, diarrhea, shingles, mouth sores, lorazepam; then silence. BD (pancreatic cancer): e-mails about nausea, weight loss, rearranging Monday’s chemotherapy appointment, lab results, fatigue; silence. EH (lung cancer): an inquiry about an appointment time, an episode of confusion, a fall, pain, hospitalization; silence. MP (renal cell carcinoma): low blood cell counts, a note of thanks, a Happy New Year greeting, a request for a second opinion, pain; silence.
What happened in the space of those silences? I realized that, for the most part, I never kept in touch with my patients once chemotherapy stopped working, instead handing off care responsibility to my hospice and palliative care colleagues. As I read through those e-mails and recalled my relationships with those patients, I wondered if this well-meaning transition, although in many ways appropriate, should be reexamined for its effects on patients, doctors, and the doctor-patient relationship.
My eyes returned to two particular patients—LB and MM—and I couldn’t help but smile thinking about them.
A Physician Treats a Physician
LB was a bright, well-respected physician with a horrible cancer. He came to our hospital for a second opinion and stayed under our care as we enrolled him onto a clinical trial. It was the first time I had taken care of another physician for an extended period, and I got to know LB well. I met his family and talked to him about his practice and the challenges of transitioning away from it prematurely. I fielded many of his calls and e-mails, and he was kind enough to allow me to be his primary oncologist. In return, I allowed him as much control as possible in his care.
LB did well at first, with the tumor shrinking and pain abating, which allowed him to travel. He continued to chair national meetings and to bring gifts of fruit baskets for all of us in the clinic. But inevitably, as he and I had known from the start would happen, his cancer began to grow once again, and soon a permanent abdominal drain was required. A new course of chemotherapy was useless and then came weight loss, fatigue, thrush, blood clots, and pain.
We met and spoke about hospice. He agreed that it was time, and we made a referral. He jokingly said that he would not bother me so much anymore, because the hospice doctor would take over. That was the last time we spoke until I received an e-mail from his wife informing me of his death at home, followed several weeks later by a card from his family thanking me for his care.
“What is my responsibility to my patients at the end of life?”— Daniel M. Geynisman, MD
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A Striking Sense of Guilt
At the same time, I was taking care of MM, a recently retired schoolteacher, avid golfer, fisherman, and tennis player. His cancer, originally diagnosed as localized and treated with liver surgery, had returned and was no longer curable. MM was stoic, calm, and accepting of his diagnosis. His wife was obviously in love with MM and shocked and confused about their new predicament. She told me during our first meeting that they were looking for a doctor who would be with them “throughout his illness,” until the end. I promised that I would do just that. And indeed, I watched him go through months of chemotherapy as well as yoga, acupuncture, daily tennis, and numerous fishing trips (we joked that he fished more in one year than most people do in a lifetime). Eventually, his cancer, too, progressed.
As I was trying to manage MM’s pain and arrange for initiation of palliative radiation, I left for vacation. On my return, I found that MM had been referred to palliative care by one of our nurses and had shortly thereafter transitioned to hospice. Several weeks later, I received an e-mail from his wife informing me that MM had died at home while she held his hand. About a month later, I received a package of century-old books that he had been reading during one of his hospitalizations (we shared a love of antique books). This gift moved me deeply and, at the same time, gave me a striking sense of guilt; it made me wonder if I had failed my patient by not walking with him to the end as I had promised.
A Physician’s Responsibility at the End of a Patient’s Life
LB’s and MM’s stories raise many questions for me. What is my responsibility to my patients at the end of life? Is it appropriate or even better to refer them to a more experienced clinician or clinical team to deal with the problems such patients face in their final days (ie, palliative medicine and hospice care specialists)? Do patients and their families want me, the primary oncology physician, to be around for the last phase of their lives? Do I ultimately break my pledge to patients as I prematurely end my journey with them when there is no longer “active therapy” to offer them?
For both LB and MM, some would say that the course was as good as it could have been. We candidly spoke about their diagnoses upfront; we tried our best with chemotherapy; we explored clinical trials and modern tissue analysis; we tried to focus on quality of life; in the end, they died at home, with adequate support. Yet, for me, it feels like I could have done better.
Emotional Impact of Relinquishing Care
I have kept in touch with MM’s wife since his death, periodically exchanging e-mails with her, checking in, and answering some of her lingering questions. Throughout this time, I have begun to think more often about the emotional impact of transitioning care at the end of life for both the patient and the doctor.
Two months after MM’s death, I gathered enough courage to call his wife and ask about her husband’s last days at home with hospice.
What I heard was encouraging. The hospice nurse was great, she related. His pain, which led to “utter helplessness” initially, was well controlled. Friends and family were able to visit and say goodbye. But when I asked if she or MM felt let down by me as MM’s care was completely taken over by hospice, a short, but noticeable silence followed. She said, “I know it’s not your job… but when he was close to dying, I panicked and called hospice…. The person on the other end was not helpful, and I quickly hung up. I would have loved to have been able to call you.” Although his wife did not suggest directly that I failed them, it was clear to me that by completely relinquishing my care, I left behind a part of my promise and perhaps an invaluable part of my mission.
“Staying connected with my patients and their families until the end of their illness would make my work richer, and I wonder if it may offer some peace for my patients.”— Daniel M. Geynisman, MD
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Abandonment at the end of life has been described before in oncology, with patients expressing concern about not having access to a known physician’s expertise, continuity of care, and support during their most vulnerable times.1,2 Although we are often taught as oncology fellows to speak of “refocusing our efforts to treat your symptoms,” in reality, those efforts are often not made by us (oncology fellows) but by someone else. There is often a lack of closure and continuity, and studies have shown that few oncologists participate in any type of bereavement practice, including contacting the family of the patient after death.3
Challenges Faced by Fellows in Providing End-of-Life Care
There are several roadblocks for fellows to the provision of care at the end of life. One of them is a lack of training, mentorship, and expertise. What should I have said to MM’s wife if she had called me in that moment? No one had prepared me for such a conversation.
Another barrier is limited time. We spend so much energy learning about the new advances in cancer—and sometimes working to contribute to those advances—that when it comes to the aspects of care outside our direct area of expertise, we can shrink away from what seems like too daunting and scary a task, especially once we feel there is no more cancer-directed therapy to offer. At that point, many of us turn to our palliative care and hospice colleagues, and appropriately so, I believe.
Much has been published on the effectiveness of excellent end-of-life care in the hands of experienced and well-trained providers.4,5 There are now many fellowships devoted exclusively to this area, and perhaps this separation of responsibility is as it should be—no different from referring a patient to a gastroenterologist for an endoscopy or a psychiatrist for depression. Maybe the best we can do for our patients at the end of life is to refer them to our more experienced colleagues (this may also be the least time-consuming for the fellow). But I wonder if handing over care for our patients at the end of life causes us to lose out on one of the most important aspects of being a physician and causes the patients and families to lose out on a therapeutic relationship, continuity of care, and closure.
Building Deep Relationships With Patients and Families
Looking back, many fellows would probably say that their decision to enter oncology had to do with a combination of factors: ability to sometimes cure life-threatening illness, having the opportunity to care for ill patients, and being a part of a rapidly evolving field. But an additional important reason for entering oncology for many fellows is the chance to build deep relationships with patients and their families at a time when they are the most vulnerable and in need, to be their advocate and resource, to guide them through a grueling time and hope with them for the best.
Unfortunately, as I quickly learned in fellowship, for many of my patients, this will be a journey that will inevitably end in death, and I now believe that part of my responsibility (and privilege) is to give these patients the possibility of the continued presence of their physician throughout their disease trajectory. Staying connected with my patients and their families until the end of their illness would make my work richer, and I wonder if it may offer some peace for my patients.
As treatments improve and metastatic cancer slowly begins its transition to a chronic disease model, even our sickest patients are often with us for many months and even years. This further bolsters the opportunity to enter into a long-term relationship with patients, including after chemotherapy or targeted therapy options have been exhausted. Learning how to engage our patients appropriately at this difficult time could be a standard part of fellows’ training and should not only be available to those who actively seek it out.
“I need to learn how to keep a connection to the end with those I have promised to take care of.”— Daniel M. Geynisman, MD
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A Connection to the End
MM and LB taught me to be available to my patients, even after I am no longer administering medications and even after other physicians are primarily directing their care. Although I still believe that end-of-life care is complex and probably best primarily managed by palliative care and hospice providers, I have decided to make staying in touch with my dying patients a personal goal. For my patients and their families as well as for me as a developing oncologist, I need to learn how to keep a connection to the end with those I have promised to take care of. ■
DISCLOSURE: Dr. Geynisman has served in a consulting or advisory role for AstraZeneca, Exelixis, Pfizer, and Seattle Genetics/Astellas; and has received institutional research funding from Astellas Pharma, Calithera Biosciences, Genentech, and Merck.
REFERENCES
1. Back AL, Young JP, McCown E, et al: Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: Loss of continuity and lack of closure. Arch Intern Med 169:474-479, 2009.
2. Daugherty CK, Steensma DP: Overcoming obstacles to hospice care: An ethical examination of inertia and inaction. J Clin Oncol 20:2752-2755, 2002.
3. Corn BW, Shabtai E, Merimsky O, et al: Do oncologists engage in bereavement practices? A survey of the Israeli Society of Clinical Oncology and Radiation Therapy. Oncologist 15:317-326, 2010.
4. Bakitas M, Lyons KD, Hegel MT, et al: Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA 302:741-749, 2009.
5. Temel JS, Greer JA, Muzikansky, A, et al: Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med 363:733-742, 2010.
Acknowledgment: Dr. Geynisman would like to thank Robert M. Arnold, MD, of the University of Pittsburgh, and Laura A. Vella, MD, PhD, of the University of Chicago, for their invaluable comments and edits in preparing this article.
At the time this article was published in the Journal of Clinical Oncology, Dr. Geynisman was practicing at the University of Chicago.
