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 one-page 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.
David S. Ziegler, MBBS, FRACP, PhD
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 started 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 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 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. 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?
When Does Hope Become False Hope?
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 their child would survive.
For the first 2 years, it went well. All my patients went into remission. 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 high-risk 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 I had failed and 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 her 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.
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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; 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?
What Do Parents of Children With Cancer Want to Know?
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 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.
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? Ultimately, is that not what the art of oncology is about? The individual patients we treat and talk to over the years 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?
Predicting the Future
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.
“When a cure may no longer be possible, we can still ensure every child will always receive the highest quality of care.”— David S. Ziegler, MBBS, FRACP, PhD
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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.
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.
Finding the Right Words
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, 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.
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 I heard what she was saying, I understood her concerns, and the risks of anything going wrong were very, very small; procedures like this were done every day; I had another patient, just like her, who was just as worried about her procedure, and she had done just fine; she was being treated by the best physicians in a leading institution, and, 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.
DISCLOSURE: Dr. Ziegler reported no conflicts of interest.
At the time this article was published in the Journal of Clinical Oncology, Dr. Ziegler was practicing at the Kids Cancer Centre, Sydney Children’s Hospital, Randwick, New South Wales, Australia.
