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Originally published as JCO Early Release 10.1200/JCO.2008.20.7126 on January 26 2009 © 2009 American Society of Clinical Oncology.
Another Infusion of HopeFrom Unità di Oncologia Medica, Ospedale Madonna del Soccorso, San Benedetto del Tronto; and Unità di Oncologia Medica, Ospedale Murri, Fermo, Italy. Corresponding author: Francesca Giorgi, MD, Ospedale Madonna del Soccorso, Via Manara 3-7, San Benedetto del Tronto (AP), 63039, Italy; e-mail: romeofrancesca{at}gmail.com.
Hope is a strange invention –
It was an ordinary Monday morning at the outpatient oncology clinic. As usual, it was a busy day; the waiting room was crowded with patients lining up for examinations, laboratory tests, and chemotherapy sessions. Telephone calls about the myriad of problems that had occurred over the weekend, requiring unscheduled visits to the clinic, never seemed to end. Late in the morning, a colleague from gynecology called me. "My sister is rapidly getting worse. Could you please come with me to see her this afternoon at her house?" I was tired, but I could not say no. My colleague's sister, Mrs G, was a woman 45 years of age with metastatic adenocarcinoma of the lung, which had been diagnosed 8 months ago. She had been treated at our clinic with cisplatin and gemcitabine, then erlotinib, and then pemetrexed. None of these treatments were effective. Pemetrexed was stopped because of her deteriorating clinical condition. Mrs G was a bright, educated, quiet woman who left all decisions concerning her clinical care to her husband and sister, never asking direct questions about her disease. The most important thing for her was knowing that if one treatment failed, we would be able to offer her another treatment. I knew her family well, including her husband—an influential and wealthy man who had always taken care of her and her son, who was 18 years of age, with loving affection. Their social status had allowed them to consult with almost every Italian lung cancer expert, perhaps searching for someone who would deny, or at least mitigate, Mrs G's dismal prognosis. She returned from each consultation more hopeful. Every mention of a promising experimental therapy was considered an actual possibility of cure, and every attempt to bring her back to grim reality was stopped by her husband and sister. "Please, let her still have hope. She believes that her disease can be controlled for a long time, even though she realizes she won't be able to recover." After an emotionally charged discussion with the family, we reached an agreement. As long as she did not ask me specific questions, I would not give her additional details about her prognosis. When she came to the clinic for her last cycle of pemetrexed, she walked slowly, leaning on her husband's arm. I asked her how she felt, probing for new symptoms. She did not ask any questions about her clinical situation, and attributed her severe fatigue to previous treatments. The family members reinforced her opinion by reassuring her about the efficacy of pemetrexed. When I mentioned the possibility of disease progression, I received no reply. In the next few days, her condition deteriorated rapidly, and she became unable to return to the hospital. Her sister told me that she was now almost completely bedridden. Although pain and dyspnea were under reasonable control, her main concern was her inability to go to the hospital for more chemotherapy. I arrived at her house late in the afternoon. Her husband and son were waiting at the doorstep, looking distressed, with tearful eyes. I went to her room on the first floor. She was lying in bed, receiving an intravenous infusion. She welcomed me with a big smile and said, "Doctor, do you believe this chemotherapy will work?" At first I thought she was confused, but then her sister whispered to me, "It's only folic acid in normal saline, but she believes it's chemotherapy." Not really knowing what to do, and almost against my will, I could not help saying, "I hope so." Two days later, her sister informed me that she had died quietly, in a drowsy state. "She was peaceful."
As previously discussed in Journal of Clinical Oncology, there are two different views on how to inform cancer patients about prognosis.2–4 Some oncologists support explicit communication that makes patients aware of their destinies, so they can attend to all practical, personal, and family issues in due time. Others emphasize that the desire to maintain hope is strongly linked to human nature, and patients really do not want, or need, to know accurate prognostic information; therefore, communication should be tempered, even if the patient asks for prognostic information. This approach, known as necessary collusion,2 purposely leaves a certain degree of uncertainty in prognostic estimation to keep hope alive. Excessive or unrealistic hope in the advanced stage of an untreatable illness is often considered a maladaptative coping mechanism, leading to the overuse of chemotherapy and late referral to palliative care and hospice facilities. It has been argued that the expanding use of futile anticancer treatments near the end of life is a frequent result of the common tendency to avoid difficult end-of-life discussions.5 Various studies have evaluated patients' preferences for prognostic information in the early stage of disease, but such data are scarce in the advanced palliative setting, when prognosis is often not discussed.6 A recently published study suggests that end-of-life discussions have a positive impact on patients' quality of life, because they lead to earlier hospice referral and less aggressive medical care.7 Cultural, religious, and social aspects must all be taken into account in breaking bad news, especially in countries such as Italy and Japan, where patients' families still play an important role in managing the flow of information to patients. In such situations, family members frequently interfere with the patient-physician relationship, resulting in marginalization of patients in the decision-making process. Balancing hope with honesty and involving patients in end-of-life decisions are essential skills for medical oncologists, but we must also accept that some patients still find hope by ignoring clinical reality.8 The case of Mrs G is an example of a challenging situation for which no textbook or clinical guideline provides a clear solution. Patients like Mrs G have a deep need for hope, even when they have advanced and clearly irreversible disease. In the case of Mrs G, the expectation of improvement was never lost, and in fact, this seemed to be a crucial factor in helping her cope with the disease. Should I have told her that her last infusion was just a placebo, and there was no longer a need for chemotherapy? Was I too collusive, preventing Mrs G from making important decisions or being able to fulfill her last wishes? Could my conduct be condemned as unethical? There are no correct answers to these questions. However, as events unfolded, Mrs G dictated the kind of information she could bear, forcing me to reconsider the delivery of unwanted medical details. Given her earlier requests not to receive negative information, her situation was different from what has been termed necessary collusion.2 The Latin phrase "Spes, ultima dea" (ie, hope, the last goddess) clearly expresses the state of mind of patients like Mrs G, who believe hope is the one sentiment that keeps them alive. Do we, as physicians, have the right to douse this final flame?
The author(s) indicated no potential conflicts of interest.
We thank Guido Silvestri, MD, from the University of Pennsylvania School of Medicine (Philadelphia, PA) for revising the manuscript.
Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. Dickinson E. Hope is a strange invention. In Dickinson E: The Complete Poems of Emily Dickinson. Boston, MA: Back Bay Books, 1976. p.597. 2. Helft PR: Necessary collusion: Prognostic communication with advanced cancer patients. J Clin Oncol 23:3146–3150, 2005. 3. Groopman JF: A strategy for hope: A commentary on necessary collusion. J Clin Oncol 23:3151–3152, 2005. 4. Kalemkerian GP: Is collusion necessary? A commentary on necessary collusion. J Clin Oncol 23:3153–3154, 2005. 5. Earle CC, Landrum MB, Souza JM, et al: Aggressiveness of cancer care near the end of life: Is it a quality of life issue? J Clin Oncol 23:3860–3866, 2008. 6. Hagerty RG, Butow PN, Ellis PM, et al: Communicating prognosis in cancer care: A systematic review of the literature. Ann Oncol 16:1005–1053, 2005. 7. Wright AA, Zhang B, Ray A, et al: Association between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 14:1665–1673, 2008. 8. Clayton JM, Hancock K, Parker S, et al: Sustaining hope when communicating with terminally ill patients and their families: A systematic review. Psychooncology 17:641–659, 2008.[CrossRef][Medline] Submitted October 22, 2008; accepted November 10, 2008.
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Copyright © 2009 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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