Originally published as JCO Early Release 10.1200/JCO.2008.19.0454 on November 17 2008

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Surprised by Hope

Prudence A. Francis

From the Division of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia

Corresponding author: Prudence A. Francis, MD, Division of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Locked Bag #1, A’Beckett St, Melbourne 8006, Australia; e-mail: prue.francis{at}petermac.org

INTRODUCTION

Providing and maintaining hope for patients with incurable cancer is something that medical oncologists recognize as important. Yet the fine line that we frequently tread between giving a realistic prognosis to facilitate informed decision making, while not taking away hope, can prove challenging. Sometimes during a subsequent consultation, an oncologist may discern a significant mismatch between the prognostic information they have previously tried to convey and the patient's view of their future, which may present a dilemma. Physician estimation of how long a patient with advanced cancer might survive if they receive systemic therapy, versus their actual survival, may be substantially mismatched in some cases.

ILLUSIVE HOPE

In 1999, a 49-year-old patient underwent breast-conserving surgery for a poorly differentiated hormone receptor-negative invasive cancer. A postoperative computed tomography scan revealed multiple liver metastases. A small randomized trial had been published that reported an advantage to a high-dose chemotherapy approach.¹ Many women faced with advanced breast cancer were attracted to such an approach, which at the time seemed to offer the greatest hope. The patient elected to participate in a clinical trial involving three cycles of high-dose chemotherapy with stem-cell rescue and achieved a complete remission. Nine months later, imaging showed regrowth of her liver metastases. Meanwhile, the author of the publication supporting high-dose chemotherapy had been discredited.

Given the toxicity of her prior therapy, the patient was not enthusiastic about receiving further systemic therapy. However, she had her husband and school-age children also to consider. I tried to give the patient and her husband a balanced appraisal of her situation and the goals of further therapy to assist with the decision-making process. Although I believed that she might derive temporary benefit from further chemotherapy, I was cognizant of the fact that she was reluctant to receive any further systemic therapy and had impaired bone marrow reserve and, therefore, did not want to "oversell" the potential benefits. After due consideration, the patient elected to proceed with further chemotherapy on condition that "I don’t want to end up in the hospital again and I don’t want to lose my hair."

BE MORE OPTIMISTIC

During one of our subsequent consultations, the patient told me, in the presence of her husband, that she wanted me "to be more optimistic about my prognosis." Temporary control of her tumor was not how she viewed her future—she was not going to be succumb to this cancer! She planned to explore lifestyle complimentary approaches in addition to conventional therapy, and felt positive about her future. She "needed" me to express the same positive view of her future, to support her mindset. I respected the courage required to make such a request, while doubting the prognosis she envisioned. However, after considering her clearly stated wish, I decided that it was reasonable to accede to her request. During our subsequent consultations, which her husband always attended, I reflected the positive outlook that she desired from me, although it was unclear to me how long-term survival might be achieved. Whenever there was discussion of overseas travel, in a subsequent year for some special occasion, I remained supportive of these longer-term goals and plans, even though I was uncertain that she would be able to make such a trip.

The patient responded to her next chemotherapy regimen. Subsequently, each time her disease progressed, I continued to encourage her with an optimistic view, and each time it seemed a new treatment had become available (frequently one that hadn’t been accessible at the time of her initial diagnosis). When HER2 testing became relevant, her tumor tested positive, and further treatment options became available. When we had exhausted treatment options that did not result in alopecia, she agreed to try a regimen that caused variable and gradual alopecia. The systemic treatments this patient received over subsequent years read like a textbook chapter on the latest new breast cancer systemic therapies, and her cancer responded to many of these treatments. In 2005, during a discussion with the patient, I reflected that she had been validated in her request for a more optimistic prognosis from me 5 years previously, when her liver metastases had recurred after the high-dose chemotherapy treatment. She continued to enjoy her part-time job as a teacher throughout the majority of her illness and eventually faced her students wearing a wig. She traveled overseas regularly to visit family and saw her own children complete their education.

THE TRANSITION TO A PALLIATIVE APPROACH

During late 2007, we were to have a consultation I had been steeling myself for—the transition to a purely palliative approach. In heavily pretreated patients, such consultations may mark a major shift for the patient, given that, on multiple previous occasions when progressive disease has occurred, there had been discussion of the option of alternative anticancer therapy. I felt that the likely toxicity from further systemic therapy would outweigh the potential benefit. Because she had responded to so many different prior treatments over several years, I was concerned that she would find this recommendation difficult. I was also uncertain how, after years of supporting a positive viewpoint, I could now best negotiate this new terrain. Nonetheless, I was surprised and greatly relieved to find this approach was quite acceptable to her. "It's not as if we won’t be doing anything to fight the cancer" was her reply. During all these years, I had believed that the new cytotoxic and targeted systemic therapies she received were controlling her disease, while my patient believed that her lifestyle and complimentary approach was a significant factor in her well-being. Our dual approaches had happily coexisted for many years, and we had previously laughed together about the incongruity of our views. Therefore, just because I was not recommending additional systemic drug therapy, it did not mean that she needed to cease her anticancer approach.

DISCUSSION WITHOUT THE PATIENT

The patient's husband phoned me before her next consultation to discuss her symptoms. However, during this conversation, he clearly wanted prognostic information that he did not want his wife to hear. Patients and their loved ones may have different information needs or preferences. Sometimes this is openly acknowledged when a relative invites the patient to leave the room first or the patient invites the relative to leave, so they can ask some additional questions. On other occasions, these requests for information come without the patient's knowledge. The patient's husband wanted to know how long she might survive. He had his work to consider, and as her relatives lived overseas, this information would help them to plan. I wondered if he and his wife had discussed her dying, or if this remained unspoken between them, despite the supportive relationship that I had observed between them.

REFLECTIONS

After this patient's death at home some weeks later, I reflected on all that had changed and what I had learned while caring for her since her initial presentation with liver metastases 8 years previously. Caring for patients with advanced breast cancer provides medical oncologists with the great privilege of caring for some patients closely over many years. I find it helpful after the death of a patient to contemplate how caring for that particular patient over time may better inform my care of future patients. I was pleased that this patient had died at home, as I knew how she disliked being hospitalized after her experience with high-dose chemotherapy. I was pleased that subsequent to completing the high-dose chemotherapy treatment trial, despite virtually continuous systemic therapy throughout her illness, she only had one other 4-day hospitalization 7 years later for an infection. We had thus achieved the ambulatory care for which she had asked.

When this patient presented me with a specific request, in the presence of her spouse, regarding prognostic communication, it seemed that my optimism was a necessary component in the support of her psyche and maintenance of hope. She wished to maintain hope for an unlikely outcome, and it seemed a reasonable decision to support her in this. Just as medical oncologists make differing therapeutic decisions on an individual patient and tumor basis, so it may also be appropriate to respond differently to individualized patient existential needs. Ironically, the approach of supporting this patient's view of her prognosis saw the realization of many of her hopes as the years unfolded. This approach may be criticized, nevertheless, on the grounds that patients who overestimate their survival probabilities may be more likely to choose to undergo aggressive treatment, without experiencing better survival.²

It is worth contrasting this patient's situation with the concept of "necessary collusion."³ What happened in this case is different. This patient was made aware of her overall prognosis and the incurability of her disease. She knew her prognosis already, which is very different from what has been proposed by others where patients are not clearly told their prognosis at the outset and thus may not be adequately informed during the treatment decision-making process. I never lied to my patient at any point about the potential benefits of therapy, but appropriately tempered my approach to avoid beating her over the head with poor prognosis talk at every juncture along the way. I believe that my patient had her eyes wide open, but preferred to wear rose-colored glasses.

AUTHOR's DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author indicated no potential conflicts of interest.

NOTES

published online ahead of print at www.jco.org on November 17, 2008.

Author's disclosures of potential conflicts of interest and author contributions are found at the end of this article.

REFERENCES

1. Bezwoda WR, Seymour L, Dansey RD: High dose chemotherapy with hematopoietic rescue as a primary treatment for metastatic breast cancer: A randomized trial. J Clin Oncol 13:2483-2489, 1995 (retracted June 2001)[Abstract]

2. Weeks JC, Cook EF, O’Day SJ, et al: Relationships between cancer patient's predictions of prognosis and their treatment preferences. JAMA 279:1709-1714, 1998[Abstract/Free Full Text]

3. Helft PR: Necessary collusion: Prognostic communication with advanced cancer patients. J Clin Oncol 23:3146-3150, 2005[Free Full Text]

Submitted July 8, 2008; accepted August 13, 2008.

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