The Gift of Truth: Finding Closure After the Last Oncology Visit

Listen to ASCO's Journal of Clinical Oncology essay, "The Gift of Truth" by Dr. Ilana Hellmann, an Attending Physician in the Hematology Department at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann shares how it is an immense privilege and grave responsibility for physicians to give bad news to patients who have a terminal disease.

TRANSCRIPT

It was a hot and humid Tuesday in July, and I distinctly remember being grateful for the air conditioning in the pastel-shaded waiting room of the oncology outpatient clinic. My father sat silently beside me. We knew this room well, as we did the doctor we had arrived to see. He had been my late mother's oncologist until she had passed away just over a year previously from metastatic breast cancer. Dad remembered him being kind yet direct and had requested that he be his oncologist now that he needed one.

I watched his hands fidget with the slip of paper bearing the number that would be called over the loud speaker. My father was 84 and a retired university professor of statistics. He spoke seven languages and his friends called him the encyclopedia as he was an endless fountain of knowledge in history, politics, literature, art, etc.…. His number was called, directing us to a room we had been in many times before. After greetings and some small talk about my late mother, Dr Cohen addressed my dad and slowly went through the history.

He had had surgery for a squamous cell carcinoma on his scalp along with skin graft 6 months earlier. Two or 3 months later, he complained of pain in his right hip which seemed to worsen by the day. After some imaging and assessment by an orthopedic surgeon, a diagnosis of osteoarthritis was declared, and the treatment recommended was a total hip replacement.

The surgery was performed and my dad, who had been suffering from extreme pain, felt immediate relief. He was delighted with the results of the procedure, delight that dissipated in an instant when the pathology report came back: metastatic squamous cell carcinoma.

He had been quickly referred for a course of radiation which had been completed. This meeting was intended to discuss further treatment. Dr Cohen gently explained that my father's cancer was not curable and that there was no good treatment available for him at that time.

I do not really remember much of what was said after that. I found myself thanking him for his time and helping my father to the car. The drive home was awful, with awkward silence broken only by a discussion about what he was going to have for lunch. We both pointedly avoided talking about the meaning behind Dr Cohen's explanations. I was stunned. I felt like my father had been fired by his doctor and that I had been left to deal with the consequences. I felt alone, abandoned, and betrayed.

The next few days passed quickly as I juggled my busy hospital schedule with family dinners, school runs, and the sporting activities of my three boys—the oldest of whom was 11 years old at the time. The weekend came, and on Saturday morning, my husband and I planned to meet friends at the local swimming pool as we so often did in the hot summer months. Leaving him to clean up honey and pancakes, I went across to the apartment opposite ours to say good morning to my father and tell him we would be gone for the better part of the day.

He was sitting up in bed and said: "Before you go, please bring me my phone book." He still used an alphabetized phone book, mostly in my late mother's hand writing. I found the book and held it out to him. "Find David Green's number" he said, which I did. "Dial it please" he said while looking for his glasses on the bedside table. I dialed and handed him the phone. I then listened as he greeted David—an old colleague from his years in academia. Dad had not spoken to David in many years. He explained that he had cancer, and that he did not have much time, but that he wanted David to know how much he had enjoyed working with him and to thank him particularly for his contribution to an article they had published together.

I got up to go and, seeming not to notice, he asked me to dial the number of another friend. Realizing this was going to take some time, I called my husband and told him to take our boys to the swimming pool without me. I sat down next to Dad on his bed and dialed number after number. My parents had lived in a few countries, and my father's academic career had connected him with people all over the world. Over the course of almost 6 hours, he spoke to friends, relatives, old neighbors, and many work colleagues. He had a personal message for every one of them and started each conversation with a clear and brief explanation of the circumstances of his call.

There were some people who were not home for his call, and he left long messages on answering machines. Those 6 hours were cathartic for the both of us. It was sad but also terribly beautiful and filled with my dad's signature black humor. Once we had contacted everyone in the phonebook, he continued his mission and gave me a list of people he wanted to be present at his funeral, as well as a second list of those he would prefer not to be there. Then, he handed me an envelope which contained a substantial sum of money. "This" he explained "is for the gentlemen who come to take my body." My mother had died at home, and he remembered the two ambulance men who had come to take her body to the morgue after she had passed. He had been struck by the difficulty of such thankless work and wanted to make sure they were appropriately compensated.

Very soon after that Saturday, my father had a seizure and was diagnosed with brain metastases. As dad had made it very clear that he wanted palliative care and no admissions to the hospital, Dr Cohen connected us with the services of home hospice care. He deteriorated rapidly and died at home, as he had wished, 3 months later. The money in the envelope was duly delivered to its intended recipients, and there are some people who were not at his funeral.

I have often gone back to the conversation in the oncologist's office on that July morning. Oncologists conduct end-of-life discussions with their patients every day. How does one tell the patient the truth without taking away every ounce of hope? Does every patient have to know that he is dying? I had never thought about the immediate consequences of what I say to my patients and their loved ones until I had to get my dad to the car and spend those eternal 20 minutes with him on the drive home.

Bad news is difficult for those on the receiving end but no less so for those given the task of delivering it, especially when it concerns a terminal illness. There are some physicians who avoid telling their patients that their disease is terminal altogether. In not telling patients of the terminal nature of their cancer, are we protecting them or ourselves? And are we preventing them from being able to use the time they have left in a way they would wish with the knowledge that time is limited?

There are those patients who cannot or will not talk about death. Knowing how much to say to each of our patients, and choosing the appropriate words, is an art. The task entrusted to physicians of giving bad news is both an immense privilege and a grave responsibility.

My father received a brutal gift that day. But brutal as it was, it was a gift that enabled him to part, to make peace, and to prepare for his coming death. I have since had countless conversations with my own patients about their imminent demise. I constantly remember my father and that special Saturday. My memories are of tears, and of laughter, and most of all, of a sense of closure for the both of us. I hope that I am able to give my patients their truth in a way that will make it as much a gift for them, as it was for him.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Ilana Hellmann, who is an Attending Physician in the Hematology Department at Meir Medical Center in Israel. In this episode, we will be discussing her Art of Oncology article, "The Gift of Truth."

At the time of recording, our guest has no disclosures.

Ilana, welcome to our podcast, and thank you for joining us.

Dr. Ilana Hellmann: Thank you for inviting me. It's wonderful to be here.

Dr. Lidia Schapira: You've been on our show before, so let me just start by diving right into your beautiful article. It honors the memory of your father, a Professor of Statistics, who had an encyclopedic knowledge of the world and spoke seven languages and was known by so many different people. And you start by bringing us to the moment in the waiting room of the oncology department that was familiar to both of you because your mother had been a patient and you had very carefully selected the oncologist for your father. You say it was a July humid day, and his number is called. And then what happened?

Dr. Ilana Hellmann: Well, as I wrote, all the moments that you've just repeated from the article are things that are imprinted in my mind as if it happened yesterday. My father passed away in 2014, and there are those moments and many others that I remember very, very clearly. It's something I hear from my patients also all the time. They remember exactly the day they received the diagnosis, the time of day, they tell me what I was wearing when I told them whatever it was I told them. And it's something that struck me that when I went back to that day and many other things that happened afterwards, I remembered every second. I think I knew what the oncologist was going to say in retrospect, but at the time, maybe I didn't think about it.

It's very interesting that we as physicians, especially oncologists, we know exactly, but when it comes to family members, we're a little blind. And I've had this experience a few times since my mother passed away from cancer. My father and my father in law passed away just over a year ago, also from metastatic pancreatic cancer. So we know it very well.

Dr. Lidia Schapira: Sorry.

Dr. Ilana Hellmann: As I wrote in the article, I remember going in with my father. I remember the conversation, or at least the beginning part of it, but once the message hit home that, "This is what we have, the bottom line is there's not a lot we can do. We certainly can't cure your disease." I don't remember anything else that happened after that.

Dr. Lidia Schapira: And you described the ride home after that. You mentioned that you felt your father had been fired, had been fired from anything that was perhaps curative or offered sort of some optimism, perhaps the conversation was a little deeper and supportive and offered some palliation. But what you took away was that this was awful. He was fired. Then you say the ride home was really difficult.

Tell us a little bit about that. What was it like to leave the oncologist office as the sort of informed knowledgeable daughter who had just received this message?

Dr. Ilana Hellmann: Exactly that. And I kept thinking in my mind, "How much do I say, what is he thinking? How much does he understand?" I was almost jealous, a little of people who have no medical knowledge. So much easier. Maybe it's not, but I think it's really tough for physicians as family members of patients who are unwell. But my father was, as I described, an exceptionally intelligent person, a real intellectual. He was enormous, not physically, but there was nothing he didn't know. You could ask him anything. He read the dictionary for fun. These are things that he liked to compare languages and cancer made him very small. And it was awful. It was just awful, awful to see. And that moment, it was very emphasized how small he was. He was just silent. There was just nothing, and I didn't know what to say. I felt absolutely helpless. And as I described, that drive is 20 minutes, maybe even a little less. It was endless.

And I remember that I went home with him. It was lunchtime, and I dropped him at home and I went back to work. I think I had taken the day off, to- I didn't know what was going to happen with the oncologist, and I went back to work because it was easier to go back to work than to stay at home. And he was silent. He said nothing. And the next time I understood what he was going through was on that Saturday with everything that happened.

Dr. Lidia Schapira: So fast forward to that Saturday, I imagine that you were busy with your children and your work, and it was easy to– I'm going to use the old fashioned word compartmentalize, put this aside for a little bit. And then on Saturday you're going in to say, "Hey, I'm going to take the children to the pool. How are you?" And he had a completely different idea of how you were going to find yourself spending the day. And I think that's such a powerful scene in the essay when you say that he started one by one asking you to dial his contacts, his friends, his colleagues and give a message. Tell us a little bit about how that felt and bring us to the bedside or to the scene if you can.

Dr. Ilana Hellmann: So there's dad. He's in bed. He's got his morning cup of coffee. He lived with a full-time carer at that stage, who brought him some breakfast and a cup of coffee. At some stage, she brought me a cup of coffee. He was very, very focused. It was like I was an assistant, just doing what he needed so that he could talk to all the people he wanted to talk to. It was crazy. It was like watching something surreal. There were people he hadn't spoken to in 20 years that he called. He had no concept of what time it was in various parts of the world, so he woke people in the middle of the night. It was really quite something. People didn't believe me afterwards when I told them the story, and as I say, some of the conversations were very, very humorous. My father had a wicked sense of humor; very black sense of humor. So, there was lots of laughter mixed in with, "I'm dying, and I have cancer." Lots of humor, and there were a lot of tears, mostly on my part because my father was not a tearful type. He was emotional, but he didn't cry. But I remember being very tearful. I didn't know all the people. Some of the people were people I'd heard of when I was a child, all sorts of neighbors, people we'd lived next door to years before when I grew up in South Africa.

And when he'd finished, he had this sense of- he was satisfied, "I've done what I had to do." And then he moved on. He had his list of things he had to do, the money he wanted to give to the ambulance workers, the people he wanted at his funeral, he didn't want to go to his funeral. It was typical of my father to do something like that. He planned everything. And it was like he'd had a box that he had to seal and tie a ribbon and it was done. And then he was finished and he was ready and he let go. It was amazing. It was beautiful.

Dr. Lidia Schapira: When I read your essay, I felt that that was the gift he gave you. You have the word 'gift' in the title. But it's such an amazing scene for a father to be able to do, sort of a review of his life while he's still living. Instead of leaving you a box with all of his memories, he basically showed you and gave you this loving and exhaustive, comprehensive demonstration of what his life had been about.

Dr. Ilana Hellmann: Absolutely.

Dr. Lidia Schapira: And in some ways, some of the dimensions that he touched were the professional dimensions that perhaps as a child or a young adult he would not have been able to access. But you saw how big he was. What an amazing thing. Did you and he ever talk about that? What it was that led him to do that? Or was that just something that happened and you sort of both understood and just walked on?

Dr. Ilana Hellmann: It was beautiful and it's certainly a gift I've been left with. There was the gift he got and the gift I got. It was a little intense. Six hours of calls was exhausting. I remember when my husband came home and I told him, he immediately poured me a glass of wine. It was very, very difficult and it took me a long time to go through. I had no time to recover from one conversation to the next conversation. And he just kept going. He had very little breaks during the day. There were a lot of people he had to talk to, and he wanted to finish it today. He thought he was dying next week. That's not what happened. He never spoke about it again. And that was quite typical of him. He was like, "What's done is done. I've said what I had to say." There were a lot of things that he said that I heard from the conversations that he had. And as you say, there were various gifts during the day that were told to other people but intended for me and for my younger brother who was not there at the time because he lived in England. But we never discussed it again. That was the way my father was.

Dr. Lidia Schapira: You know when we, as physicians, tell patients who are sort of nearing the end of their life to say what they need to say to be prepared, this is exactly why, right? Because very soon after that, he had a seizure. He had brain metastasis. He might not have had the stamina or the ability to do what he did. So that is a very important lesson. I was incredibly moved by that scene, and I've probably read it a dozen times. You've probably thought about it a million times, but certainly this reader took a lot from that very beautifully described scene and so nicely told.

So for the last few minutes, tell us a little bit about how this personal experience has impacted your delivery of news and your relationship with the patients. You start by telling us that often, as oncologists, we give bad news but then we just move on. But people live with this, people go home like this. How has that experience as a daughter impacted your delivery of news?

Dr. Ilana Hellmann: Absolutely. There are a few parts of how it's influenced me. Somebody who read the article when I was writing it had said to me, "Wow, do all physicians have to go through these things to be able to identify with their patients or their family members?" Well, I hope not. It's a terrible thing to think of that each of us– On the other hand, there's no question that when you've been through something, you identify with the person in front of you if you know what they're talking about, you know what it's like to be a mother, you know what it's like to be a daughter. You know or you don't know what it's like to lose a parent or somebody else and the experiences that I had and I imagine anybody else have had with interactions with the medical community, with doctors, with the emergency room, with all sorts of things are things that influence the way I approach patients.

So one of the things is true. I'm guilty of the fact that it didn't occur to me that I sit in my room, I see a patient and his daughter, his wife, his whatever, and I give them this news, and then I leave the wife to deal with him outside. Or the fact that when the oncologist said, "We haven't got curative treatment for you," and I didn't hear anything else after that. Well, we know that when we tell patients something not good, there's often no point in carrying on the conversation and talking about treatment and side effects and whatever because they're not there anymore. And that's something that I remember very clearly from that.

You can't go with the patient, you can't go home with them, you can't get in the car with them, but you can remember it, think about it, choose your words carefully, maybe have a word with the spouse or the family member, whoever it is, as they're leaving outside the door, "If you need anything, call me." Maybe call them. Sometimes, I've seen that it's difficult, and I've called them the next day. That definitely has influenced me. I'm not sure there's a lot you can do about it, but I think about it. In terms of telling patients that time is limited, that you're not going to live forever, it's hard, and we want to give patients good news. It's so much easier to tell a patient that their PET CT is clear than that it's all come back and the prognosis is not good.

So I try to understand where the patient is and how much they want to go. Most patients will lead the conversation. Most patients know to tell you how far they want you to go. And I've never been sorry about telling the patient that their prognosis is bad and that their disease is terminal. And I've had lots of return conversations from families after patients have passed on about the conversations they had, about the things that they did, about the fact that the patient decided maybe not to have more intensive treatment, went on a holiday, decided not to come to the emergency room with a fever or whatever it was, and elected to stay at home with hospice.

I found that that side of oncology is no less rewarding when you have to accompany a patient on their lost journey. I've found over the years that it's actually no less rewarding than the patients who are cured. And then you see them once a year and they come and they say everything's good.

Dr. Lidia Schapira: And that perhaps is part of what we call the art of oncology, which is the being in relationship, connecting with somebody, being a rock or a source of guidance for them when they're going through incredibly vulnerable times. I think that's not something that perhaps others recognize as being rewarding, but for those of us who are drawn to it, it can be incredibly rewarding.

Thank you, Ilana. This is a beautiful conversation and such a lovely essay. I imagine there's a reason for this taking about ten years to process and write, because the impact is so deep, but you managed to do that. For that, all of the readers of JCO are grateful to you. So I thank you very much.

Dr. Ilana Hellmann: Thank you. Thank you for taking it and publishing it.

Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes

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Guest Bio:

Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center in Israel.