"Why Me?", a Question of Opportunity

Listen to ASCO's Journal of Clinical Oncology essay, ""Why Me?", a Question of Opportunity," by Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre. The essay is followed by an interview with Wein and host Dr. Lidia Schapira. Wein considers if patients are able to make rational decisions about their health when they are able to accept the reality of illness.

TRANSCRIPT

Narrator: "Why Me?", a Question of Opportunity, by Simon Wein, MD

"Why me?"

A question is an opportunity. It is also an invitation and a revelation.

A question by its nature reveals something about the asker. When a patient or family member asks the doctor a question, the challenge for the doctor is to follow up the question diagnostically, then therapeutically, be the therapy medication, or talking. Some questions appear mechanical, such as "Will I be able to drive again?" while others are more obviously self reflective, such as "Why did I get sick?" However, even the most mechanically minded question may be fraught with emotional significance.

A recent Art of Oncology poem entitled "Questions for the Oncologist" listed a litany of questions the doctor encouraged his patient to ask. All, except one: "But please, don't ask me that one thing./Don't ask, 'why me?'/You wouldn't like the answer. I don't." Later, the doctor-poet provided the answer: "Bad luck is a second-rate explanation, I know." The poem was sensitively, empathically, and thoughtfully written, apparently recalling an emotionally intense case. The poem reminded me of a patient I looked after some time ago and of a mentor past.

An obese 60-year-old man came in. He was miserable and in pain. Ten months after definitive surgery and radiotherapy for lung cancer, the disease had returned with pain in his right chest wall. While awaiting full biopsy results, we irradiated the lesion and started nonsteroidal analgesics and duloxetine for the neuropathic pain (with the hope it might also improve his mood). Within 3 weeks, the pain had been significantly relieved although his misery was unchanged. We talked. He had been divorced for many years, worked in hi-tech, lived alone, and had lost contact with his two adult children. His parents had migrated in middle age, and he was an only child born in a new country. His parents struggled, and the family dynamic could be described as sullen. The family did little together and was silent a lot of the time. He recalls his parents, especially his father, as emotionally distant, involved in their own lives. Growing up he spent a lot of time alone. At university, he studied engineering and married his first girlfriend; however, the marriage fell apart as, in his words, "I did not know how to live together with someone else." In his sullen home life, he had not acquired the skills of building a family nor had he developed a coherent world view.

Despite good pain relief, his sense of brooding and demoralized loneliness persisted. Underneath was a seething anger. He kept asking "why me?" I assumed at first that he was referring to the cancer. He was, but not only. I consulted with a mentor, and he said he often answered that question with: "Why not you?" I tried it.

The patient was flummoxed. It pushed him to reflect. With further probing, over time, his thinking changed from a closed loop of "Why me," to "What is life asking of me?" And further afield he reflected on his childhood, his failed marriage, and estrangement from his children.

Why did this happen to me? He shook off some of his depressed mood as he began to piece together his life's trajectory. In an insightful moment of acceptance he noted: "Indeed, why not me … What makes me special that I should not have the disease?" Sadly, there was no fairy-tale ending. He died alone.

When a patient asks a difficult question such as "Why me?" or "How long have I got doc?" the psychologically astute analysis is, "Why and what does the patient want to know?" and "Why now?"

Responding with the question "Why not you?" may sound harsh, even confrontational. "Why not you?" is designed to be challenging to shift the locus and focus of thinking from a passive and often ineffectual cry, "Why me?" Nevertheless might such a response appear insensitive and lacking empathy?

Over the years, I have learnt that practically any question can be asked of a patient so long as it is asked for the sake of the patient, in an appropriate manner and in the right circumstance. In short, the questions must be empathic. Wiseman suggested the empathic response has four characteristics: to see the world as others see it, to be nonjudgmental, to understand another person's feelings, and to communicate your understanding of that person's feelings.

Avoiding difficult and embarrassing questions may provide short-term relief but possibly sets the stage for later unresolved angst. I recently did a sabbatical in palliative care in Australia, a fair distance from the Middle East both physically and culturally. The openness and tempo of

questions asked of patients and family in Australia might be considered brusque (or confrontational) and hope depriving in the Middle East. Although the influence of culture is pervasive, it is the individual who needs our help and who ultimately determines the conversation. Sometimes the individual is not open to talking therapy. It is an important communication skill to know when not to probe.

"Why me" is both a deeply philosophical and a naive question. "Why me" addresses the question of justice and seeks an explanation on the assumption that ours is a rational world. However if a person thinks the world is inherently random, then such a question is naive and without intellectual value since everything is bad luck, like a random genetic mutation.

"Why me" can be a profound philosophical question as the doctor-poet implied when he concluded: "Search for a better answer within, as I have. Unsuccessfully, so far."1 The "answer within" bypasses the issue of whether it is a meaningless world or a god-driven world. The "answer within" locates the responsibility within ourselves to try to make sense of what is happening with my life. An answer within suggests a philosophy that we can make sense and meaning of my life, despite the world's apparent carelessness or bad luck.

Alternatively many people, especially here in the Middle East, hold a theological belief, and the question "Why me?" is resolved within the theology of their religious beliefs. The believers are, in a way, lucky.

Patients who ask the existential question "Why me?" can be challenged to reflect on themselves. "Why not you?" is a probing question that, with skill and some luck, may enable a measure of acceptance: "Indeed, why not me" (Fig 1).

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're joined by Dr. Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel. In this episode, we will be discussing his Art of Oncology article, "Why Me? A Question of Opportunity."

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

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

Dr. Simon Wein: Thank you very much, Lidia. It's a pleasure to be speaking with you.

Dr. Lidia Schapira: It is our pleasure as well. I'd like to start this conversation by asking our contributing authors to tell us what they're currently reading or if they have a book they've just read they want to recommend to colleagues and listeners.

Dr. Simon Wein: So I recently picked up and reread The Count of Monte Cristo by Alexandre Dumas. I don't know if you've read it. It's a very long production because in those days they used to have a weekly chapter, weekly several chapters, and they didn't have WhatsApp and television and cinemas. And it's very long, but it's a wonderful read. I enjoyed it very much. The other book I'm reading now, more slowly, is The Nature of Natural History by Marston Bates. He is an American zoologist, and it's a wonderful read about his overall view of life, animals and plants, and I'm enjoying it very much. I have a great interest in gardening, and I think his views are very interesting.

Dr. Lidia Schapira: That's wonderful. So let's turn now to your essay, "Why Me?" This essay starts as a conversation with an author who has published a prior work, a prose poem of sorts, in Art of Oncology. Tell us what it was about that read that sort of triggered you to want to respond and then clearly elaborate into what's turned into a beautiful manuscript.

Dr. Simon Wein: I think what really grabbed me was the sensitivity of the oncologist as he was writing it, and the pain, it's a little bit strong, that word, but the difficulty he had in dealing with this fear that the patient would ask him, "Why me?" He wrote it so beautifully with such empathic sensitivity, that it really grabbed me, that question, "Why me?" that he was scared of. And it recalled for me, my mentor from many, many years ago, Dr. Wally Moon. And I remember as clear as yesterday, he'd say, "Patient asked me the question, 'Why me?' I'd ask him back, 'Why not me?'" So that's what it triggered off for me reading that essay, those two things.

Dr. Lidia Schapira: Simon, you also make an interesting point that I want the listeners also to think about, and that is that a cultural context influences whether or not we feel comfortable even asking these questions, right? And you contrast your experience in a recent setting in Australia with your typical practice in Israel and the Middle East. Can you talk a little bit about that?

Dr. Simon Wein: The older I get in this profession, the more I'm impressed by the importance of culture and yet how much we have to honor the individual and that ongoing tension between those two points of the compass. And I was brought up in Australia and sort of rather Anglo-Saxon and reserved in that way, and in Australia much less likely, in a sense, to be forthcoming and outgoing in what we want to say. And in Israel, people are much more open. And yet when we come to the consulting room in Israel as in other parts of the Middle East, indeed in Eastern Europe, a lot of the literature has demonstrated that we don't want to tell the truth straight out directly.

And in Australia, on the other hand, even though it's a reserved society, people are straight out in the consulting room. Bang. They'll say, "This is the prognosis and this is what it is." So I've developed this model for my own thinking, is that in the West, the individual is the final moral arbiter of deciding ethical behavior, whereas in the Middle East it's more the family or, in a broader context, the culture. And so in Israel, you're much more likely to speak with the family, involve the family, or they'll come in and ask you not to say this to Grandma, and you have to make up your mind where the individual stands and where the cultural family influences. But from my point of view, I still think that the individual has to be honored and respected ultimately in the final decision.

Dr. Lidia Schapira: Simon, I want to also ask a little bit about your style and your communication style with patients. You are so clear in your descriptions to address not only physical pain but emotional pain and suffering and misery, as you call it. How do you sit with a patient and try to draw them out in a way that is empathetic and respectful, but also to help them understand that you actually care?

Dr. Simon Wein: I'll take you back to another mentor I had. That was Bill Breitbart at Memorial. I did a two-year fellowship in psychiatry psych-oncology there many years ago. As I said, I came from Australia. I was rather green in psychological terms, and I used to do rounds with Bill. And I remember this one patient I had with Bill, and it was a middle-aged man. He was a working blue-collar man. And Bill went up to him, we were asked to see him for depression, and Bill went up to him and started talking with him, and within 30 seconds he'd started asking about the tattoos on his arms. And I thought, wow, that's fairly personal to get into that. You only just met the bloke and you're already talking about that.

And of course, from that I learned and with other experiences, that you can ask any patient any question so long as three conditions are fulfilled, and this is what I teach to the residents. The first condition is that it has to be at the right time. Sometimes you have to ask the patient privately and you ask the patient, the family, then to leave. It has to be the right you can't ask questions like this in the corridor, so the timing has to be right. The second thing, and this is I learned a lot from Bill and from my previous mentor, Wally Moon, you have to ask it in the right way. You have to ask with the right intonation. You could have said to that guy with the tattoos, "Wow, look at those tats. I mean, where did you get them from?" You know, that might have then made him shirk a little bit and stand back. Or you could have said, "Hello, Mr. Jones, goodness gracious, look at those tattoos you've got. They look very interesting. Do you mind telling me about them?" And so the way you ask. But I think the third condition for asking any question to any patient is that it has to be for the sake of the patient. It's not for me, it's not for anybody else. It has to be that in some way, this question will benefit the patient. The patient will respect that, they'll see that.

And so I remember once I wanted to go and take a photograph of this guy who had these enormous hemangioma tumors on his leg. And I went in and I felt uncomfortable. And I realized the reason I felt uncomfortable was I was taking these photographs for myself, not for his sake. Eventually, I spoke to him and he agreed. He was agreeable for education and so forth. But I think those three conditions, the right time, asking it in the right way, in an empathic way, that's a key word, empathic or sensitive or charming or pleasant way. And for the third condition, for the sake of the patient, and I think that's really, really critical in being able to ask a patient any question.

Dr. Lidia Schapira: That is such a thoughtful, beautiful answer. And I'm going to switch to another topic just because I want to pick your brain and I'm curious to know how you would handle this. And that is, I know you do palliative care and you've clearly trained in the psychological aspect of serious illness, but do you think, wearing your palliative care hat, that cancer is special and that cancer patients are a special population when they ask, "Why me?"

Dr. Simon Wein: That's a really good question, isn't it? In our hospital now, I started off in palliative care about 15 years ago. For the first 10 years, we only did cancer patients. I'm an oncologist by training. But now we're opening up to non-cancer patients. I think that in society there's little doubt that the myth of cancer being the same as a death sentence is very strong. There are many patients with advanced New York Heart Association IV heart failure whose prognosis that is much worse than many of our cancer patients. But cancer has gotten this flavor of death, of Damocles' Sword hanging over your head and that's that, and it raises- immediately goes to all the existential questions of meaninglessness and emptiness and death and fear and loneliness and all that, much more than these other ones. And it's not true. Cancer patients today may live much much longer than we once knew and much longer than many other non-cancer patients. So I think there is something very special about that.

And cancer has got this other horrific aspect about it which is that the body is eating itself up. Your own cells have turned against you. And I think psychologically, emotionally– Well, auto-immune diseases are not dissimilar in the sense of the body turning against itself. But cancer, it's a sense of the cells dividing and coming on and eating you up. It's got that mythical aspect to it.

Dr. Lidia Schapira: And if I may add one more thing, in my mind, it's also that cancer treatment is so grueling and awful and sometimes actually exacerbates the suffering. So I think that it's cancer and the fear of consequences and exposure to cancer treatments, would you agree?

Dr. Simon Wein: A lot of our patients come to us, but they won't say to the oncologist how tough the treatment has been. They don't want to sort of feel weak in front of the oncologist they don't want to give up on that chance of getting out of the cancer. Because if they say that to the oncologist, the oncologist might say, "Oh, you don't want to miss this chance, but you're not good. But maybe we take a break from the cancer treatment." But many of them are absolutely exhausted. Absolutely exhausted.

And then the other aspect of that, not just the fear of the oncologist, but also with the family. The family are egging them on, and I often say to the family, "Listen, guys. Mom is very, very tired. You haven't got the treatment. You're young, you're well, you don't feel sick, you want to fight." The patient doesn't want to disappoint the family. The family don't want to disappoint mom. Nobody talks to each other and they have this dance of the macabre where nobody's talking to each other and the patient just keeps getting this treatment. I mean that's one of the things why I think it's worth confronting patients with the question, "Why not you?" If only to have some sense of acceptance of what it is.

Now often in palliative care oncology, when you say acceptance, it means "Right, I accept I am going to die." But I don't see it like that. I think if you have a measure of acceptance, then it will enable you to make more rational decisions about your cancer care. I mean how rational can you be in deciding about the cancer? We don't know. The oncologist gives you 30%. Well, how can you interpret 30%? I don't know. So the rationality is limited. But if you're understanding of what's going on, I think it helps you make more rational- to have treatment and continue or not. So I think that's why it's a useful thing to try and do that. But some patients don't want to, and I just don't push it. And many is the time that I've said to a patient, "You know, this is very bad. You've got cancer." It's like they come back next week, "How's my virus going?" It's like 'It'll just pass and that's it," and so you realize that and you just continue on.

Dr. Lidia Schapira: And so my last question to you, Simon, is this: as an oncologist, as a palliative care physician, as an expert in communication and psycho-oncology, what do you say to your oncology colleagues who have trouble responding to the question that patients frequently ask, 'Why me?'

Dr. Simon Wein: Lidia, it's a good question because not often do I get a chance to speak to oncologists in this way. We're often kept out of the room, and when the decisions are made, it's very difficult to backtrack a decision about treatment. Very difficult. One, because you can destroy any trust that the patient will have built up in the system, and two, it's not really collegial then afterward to go and undermine. And so that's why I write lots of articles on these subjects, Lidia, and I hope that the oncologists will read them and I hope that they get published. I distribute them at work and sometimes the young ones will come and say, "You know, that's quite good." What we're trying to do, what I think is very, very important, is to have the multidisciplinary meeting. We're trying to develop that now.

When I was in Australia, Peter Mac, we used to have them. And I think it's by a process of diffusion, by repeating the messages, the philosophy, the idea that we should ask the patient, get a picture from the patient of what's going on. Do they really want it? What's going on? What's important to them in life? Maybe they're satisfied with their lives. And then to have the balance between the side effects and the challenge of the treatment. The other thing that really gets me, got me on a bit of a hobby horse now, Lidia, is how much time in the last three months of their life patients spend on the road, coming to the hospital, doing blood tests, going home, another PET CT, another scan, and those are the last percentage of their life. It's substantial. So more and more we're actually doing telemedicine, as I'm sure you are. And at first, I was a bit skeptical about that, being an old-fashioned physician, where I think you should talk, touch them, see them, but you actually save a lot of their time and a lot of their difficulty and so forth. I think that's very good.

Dr. Lidia Schapira: Yeah, both for us and for our patients, time is the greatest gift, right? And if we begin to think about it in those terms, time saved, time freed from hanging on to a test result, or needing to go and get another scan, can be an enormous gift for them as well.

Dr. Simon Wein: Or an opportunity to live and enjoy life. And I say to every patient that every day you've got to find something to make yourself happy. I had this one patient the other day, the oncologist was mad. This poor guy's got a metastatic disease, his liver is not as good as it might be, and he was desperate to have a smoke of a cigar and a whiskey. And the oncologist said, "No, you can't do that because it could interact with your chemotherapy." And so I broke my rule and I said, "Look, the oncologist doesn't really know what he's talking about," and the guy promised to bring me in a cigar, which I haven't yet got. But anyway, I thought that was very sweet of him.

Now I just like to say one more thing. If we're talking about therapeutic relationships, I think that the best lesson I ever learned and heard was from Irvin Yalom, from his book Existential Psychotherapy. And it's like 40 years since he wrote it, and a lot of paper has been printed, articles have been printed since then. But he really was very good. He said we have to relate to the patient like ourselves. We've got the same existential problems that the patient has, you know, empathy and all that, but we've got the same problems. Theirs are a little bit more contracted in time. And what I like to do with my patients is relate to them in an authentic, real way, a genuine way, and they'll learn from that relationship how to live their lives when they go home. And I thought that was a really, really beautiful thing. And so he's got a quote there, which I love to share. And it's that "The relationship with the patient is that which heals." It's the relationship that heals. And I think we shouldn't underestimate, and I think we do sometimes, the importance of the interaction and the relationship between the patient and the doctor.

Dr. Lidia Schapira: It's a lovely way to end our conversation. Dr. Yalom is a colleague here at Stanford. He's in his 90s now, and he recently widowed. So that's a lovely thought and a wonderful teacher and mentor.

So thank you, and 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 ASCO's 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. Simon Wein is head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel.

Additional Reading and Podcast

Questions for the Oncologist, by Barry Meisenberg

Podcast Interview with Drs Meisenberg and Schapira on Questions for the Oncologist.