VOLUME

33



NUMBER

5



FEBRUARY

10

2015

JOURNAL OF CLINICAL ONCOLOGY

A R T

O F

O N C O L O G Y

Never Say Never David S. Ziegler From the Sydney Children’s Hospital Kids Cancer Centre and University of New South Wales School of Women’s and Children’s Health, Sydney, New South Wales, Australia. Published online ahead of print at www.jco.org on January 5, 2015. Author’s disclosures of potential conflicts of interest are found in the article online at www.jco.org. Corresponding author: David S. Ziegler, MBBS, FRACP, PhD, Kids Cancer Centre, Sydney Children’s Hospital, High St, Randwick, NSW 2031, Australia; e-mail: [email protected]. © 2015 by American Society of Clinical Oncology 0732-183X/15/3305w-518w/$20.00 DOI: 10.1200/JCO.2014.58.7717

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She was elderly, slightly confused, and very, very worried. I was not quite sure why. It was a minor procedure—a routine angiogram, one of a dozen to be performed that morning. The risks were so small that the job of admitting her had been handed to me, then a final-year medical student, with a simple onepage form to fill out. I took her history in 5 minutes, listed her current medications, completed the physical examination, and prepared to move on to the next patient. But she grabbed my arm and asked me if she would be all right; she was worried she was going to die. I was not quite sure what to say. We had been taught about informed consent, warning patients of all risks— even minor ones—that you can never say never in modern medical practice. Yet the consent had been signed, the risks had been explained, and the patient was now simply looking for reassurance, for comfort, for a human touch. “Don’t worry,” I reassured her. “You’ll be absolutely fine. There’s nothing to be concerned about; you’re not going to die.” She was not fine. An hour after the procedure, things started to go wrong. Her abdomen rapidly distended, her toes turned black, and she starting writhing in pain. The angiogram had triggered a shower of cholesterol emboli from the aorta, resulting in the infarction of most of her bowel. It was a rare but well recognized and potentially devastating complication. Within a short space of time, she had died. I berated myself for telling her she would be okay, for telling her she would not die, when I knew that it was always a risk—a small but tangible possibility. I did not feel that I had jinxed her, but I decided never to reassure a patient again that I had control of his or her destiny. I was left with a deep unease, unsure from that time of the best way to convey risks and prognoses to patients and at the same time provide a human touch. Is that not what patients are looking for in a physician? Someone they can trust with their life, someone they are confident will get them through? How can we balance a rational assessment of risk with our patients’ desire for hope and reassurance? We cannot predict the future, but is that not what our patients are asking us to do?

These questions continued to puzzle me as I embarked on a career in pediatric oncology. Here the risks of my patients dying were much higher than for those undergoing a routine procedure, but I felt the parents looked at me with the same fears, the same worries, hoping that I could provide them with the same absolute reassurance—that I would ensure their child would survive. For the first 2 years, it went well. All my patients went into remission. Their prognoses were good, their adverse effects manageable, and their outlooks promising. I was optimistic with my patients—most had a good prognosis—and I felt my optimism was fully justified. Then my first patient relapsed. He had highrisk neuroblastoma, which is incurable after relapse. His parents knew this; they were understandably distraught but were still looking for hope. So was I. His tumor was a little different, I thought; there were some favorable prognostic features, and the relapse was localized and outside the previous radiation field. New drugs were available. Moreover, his parents insisted, even if there was only a 1% chance of cure, they could not give up; they needed to hope. We embarked on more treatments. Although the tumor responded, the results were short lived; the tumor recurred and grew with a galloping rapidity. His treatment focus turned to palliation, and he died a short time later. Although the parents were grateful that we had tried everything, I felt that I had failed, and I started to wonder: When does hope become false hope? Then another patient presented with a newly diagnosed osteosarcoma that should have been treatable and highly curable. But during her workup, the prognosis grew bleaker. Dozens of metastatic lesions appeared in lungs and bones. Her chance of cure was less than 10%, but again, I thought her case was a little different. Her lesions responded well to chemotherapy, and as prolific as they were, all the metastatic lesions were resectable. My colleagues disagreed. They suggested the hope I was offering really was false. After a heated discussion at a multidisciplinary meeting, I pulled her parents aside to tell them what my colleagues thought—to reinforce the poor prognosis and to make sure they understood the statistics. They wanted to continue treatment;

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Art of Oncology

they too were not prepared to give up. We plugged on. Five years later, my patient is alive and well, remains in first remission, and is studying to practice medicine. What will she tell her patients when they ask her if they are going to die? When she receives her medical degree, she is likely to find it just as difficult to understand the statistics that determine our fate. In a seminal study, participants were asked to imagine they had lung cancer and choose between radiation therapy or surgery. When told there was a 10% chance of dying as a result of surgery, participants were much less likely to choose that treatment than if they were told there was a 90% chance they would survive surgery.1 Exactly the same statistics, just presented as the chance of living rather than dying. The physicians included in the study were just as unreasonable in their responses as the other study participants. I found myself thinking just as irrationally when a relative of my wife was found to carry the BRCA1 mutation. I performed challenging mental arithmetic at 3am over many sleepless nights, trying to reduce the probability that my wife would die as a result of breast cancer. By halving the chance for every degree of removal from her relative, by factoring in the statistical influence of unaffected relatives, by acknowledging the fact that perhaps 50% of BRCA1 carriers do not develop breast cancer, by adding in the cure rate for breast cancer with state-of-the-art therapy, and, as a last resort, by factoring in the population-wide incidence of 5% for nonpaternity, I had reduced her chance of dying to less than 1%—a rate even less than that for the normal population. And yet I knew that when you roll two dice, you sometimes get a double six. So I did not really sleep well until her test finally came back clear. As I lay awake at night, pondering my own family’s uncertain future, I thought of all the sleepless nights the parents of my patients must endure as they entrust us with their children’s lives and ruminate over the statistics we have thrown at them. Over the years, I have tried to understand the best way to convey this information. I have observed the practices of others, read the literature, asked parents what they would like to hear, and spoken with the real experts—the social workers who have sat in on so many day-1 talks. Some colleagues told me they never present the parents with the bare statistics, because they are meaningless for the individual—a child cannot, for example, be 50% cured. Others suggested we should ask each parent whether he or she would like to know the statistics or not. I have tried the latter approach. Sometimes it works well; the parents are quite certain that they do, or do not, want to know the specific numbers. Other times, the question takes them by surprise— you can see the fear in their eyes and almost hear the thoughts rushing through their mind. Do they want to know? Can they bring themselves to hear it? In the end, it seems to depend on what I am going to say. When the cure rate is poor, I will emphasize the aggressive nature of the tumor, the low chance of cure, but I will be careful with the statistics, checking whether they really want to hear the numbers. However, when the prognosis is good, the words almost tumble out of my mouth beyond my control. I want them to know, to reassure them, that we can fix their child. Who would not want to hear a cure rate of 90%? And although indeed it is often reassuring, what is most surprising is how often it is not. As a friend remarked to me recently, our children are like little pieces of our own heart, wandering around outside our body. Hearing that there is even a 10% chance you could lose a piece of your heart can be too much to bear. I am still surprised, when I inform parents of potentially severe adverse reactions, that www.jco.org

explaining the adverse effect is statistically rare often does nothing to reassure them. “You don’t understand,” they tell me. “Bad things happen to us. What was the chance that our child would get cancer?” The numbers are playing games with us. What I have come to realize is that for many parents, more important than any of these numbers can be the power of the story. They want to hear about patients in a similar situation who survived, who had the same type of tumor, the same prognosis, the same fears, the same hope. As much as we are taught in medical school not to rely on anecdotes, it is these stories that can be most informative and helpful for our patients and even for ourselves. Who does not like a good story? Even you, the reader—perhaps you have diligently read through this entire journal, filled with academic data and informative percentages, to finally reach this article, just as your concentration has started to wane. Or maybe you skipped straight to this article at the end, forgoing the hard data and hoping to read about someone else’s story. Ultimately, is that not what the art of oncology is about? The individual patients we treat and talk to over the years who give us the wisdom that comes from experience? And is it not true that the story of one individual can be more powerful for our patients than a journal full of numbers? On the wall in our oncology ward, we have a board with pictures of survivors of childhood cancer. It lists the patients’ diagnoses and ages. I find parents standing there, all hours of the day and night, looking carefully for a child similar to their own. And when they find the child—the perfect match, with the same diagnosis, same age, same sex, same prognosis—and see his or her picture years later, beaming at the camera, cured of cancer, they must feel like they are able to take a glimpse, a hopeful peek, at their own future. What our patients are asking us, in the end, is to predict their future—to be their fortune teller. Whether it is the elderly lady having an angiogram, the child newly diagnosed with metastatic disease, or the patient whose disease was not cured by conventional therapy, they want us to tell them their future. Those who deal with cancer— either as professionals or patients—are constantly reminded of how uncertain life is; how a minor headache can turn into a brain tumor or a fever into a leukemia that changes lives forever. And someone will experience that rare but devastating adverse effect, someone with a poor prognosis will miraculously survive, and someone with a good prognosis will in the end die. We can never say never—well, almost never. It is a well-worn cliché that the only two certainties in life are death and taxes, and for some patients, there does come a moment where we can more accurately predict their future, when death does become the only certainty. There is nothing more difficult than telling a parent his or her child is going to die, and there is no information that could possibly be more painful for a parent to hear. But when that moment arrives, if there is one thing I have learned, it is that it is something we should not wait too long to tell them. When we are given that rare insight to know with certainty what the future holds, we have a duty to begin to prepare our patients for what lies ahead. And although in medicine, as in life, so much remains uncertain, there are still some absolutes that do exist, and there are some things we can guarantee. So when a cure may no longer be possible, we can still ensure every child will always receive the highest quality of care. And it is with certainty we can tell our patients, whatever their stage of treatment, that we will do everything we can to make sure they get the best treatment, to improve their chances, to listen to their concerns, to respect their wishes, and to keep them fully informed. © 2015 by American Society of Clinical Oncology

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David S. Ziegler

I often think to myself, what would I tell that old lady preparing for an angiogram if I had my time again? I am not really sure; just as we cannot predict the future, we cannot travel back in time. But I would like to think the right words would come a little more easily to me now. I would take her hand and tell her that I heard what she was saying, that I understood her concerns, and that the risks of anything going wrong were very, very small; that procedures like this were done every day; that I had another patient, just like her, who was just as worried about her procedure, and that she had done just fine; that she was being treated by the best physicians in a leading institution, and that, as with

all our patients, we would ensure she received the best of care. Because ultimately, there are things we can control, and there are some things of which we can be certain. AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Disclosures provided by the author are available with this article at www.jco.org. REFERENCE 1. McNeil BJ, Pauker SG, Sox HC Jr, et al: On the elicitation of preferences for alternative therapies. N Engl J Med 306:1259-1262, 1982

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Participate in ASCO’s Practice Guidelines Implementation Network and Influence Cancer Care ASCO members are invited to serve in the society’s Practice Guidelines Implementation Network (PGIN), a network of oncology professionals who raise awareness of ASCO’s evidence-based recommendations on cancer care. Participation in PGIN provides an opportunity for members to positively influence the way that clinical oncology is delivered now and in the future. PGIN members have the opportunity to: ● Participate in Guideline Panels and Advisory Groups ● Aid in developing and reviewing Guidelines and Guideline Clinical Tools and Resources ● Serve as an “ambassador” to state societies ● Better implement Guidelines To learn how you can participate, visit asco.org/guidelines, or contact [email protected].

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JOURNAL OF CLINICAL ONCOLOGY

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AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Never Say Never The following represents disclosure information provided by author of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I ⫽ Immediate Family Member, Inst ⫽ My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or jco.ascopubs.org/site/ifc. David S. Ziegler No relationship to disclose

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