JCO's Award Winning podcast Cancer Stories: The Art of Oncology features stories, dialogue, and personal reflections that explore the experience of living with cancer or caring for people with cancer, hosted by Dr. Lidia Schapira.
Playing by Eye: Using Music as a Parallel to Clinical Oncology
Listen to ASCO’s Journal of Clinical Oncology essay, “Playing by Eye: Using Music as a Parallel to Clinical Oncology,” by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. The essay is followed by an interview with Preti and host Dr. Lidia Schapira. Preti discusses the parallels in playing music by ear and clinical oncology encounters.
Narrator: Playing by Eye: Using Music as a Parallel to Clinical Oncology, by Beatrice Preti, MD
The Yamaha keyboard in our cancer center is strategically placed. It rests in the center of the tall, lofty atrium, an open space that allows sound to travel and echo, creating an effect one might expect from a concert hall or a large-capacity theater. From their position, keyboard players cannot fully appreciate the music they create. In the middle of the atrium, any sound is flat, shallow, and short-lived. But, further away, and on the upper levels of the center, one can hear the music echo as the walls seem to vibrate with reflected sound. It is enough to pause one’s step to listen, perhaps recalling some half-buried memory or latent emotion a song elicits.
But on center stage, beneath the streetlamp-shaped light that feels all too much like a spotlight, the pressure is on. The keyboard faces half of the waiting room and the lobby Tim Horton’s, which means, as one plays, one can see reactions to the music—including winces when fingers slip! Faces turn solemn and reflective during slower songs; patients, relatives, and health care workers alike dance and clap to faster-paced, popular tunes. Feedback and commentary are steady—about the music, the song choices, and, of course, song requests.
I find song requests challenging; a combination of performance anxiety and only moderate competence on the keyboard affects the quality of the music that can be produced on demand, yet does nothing to eliminate the desire to fulfill a patient’s request. Indeed, the request is usually the simplest part:
Do you know Bette Middler’s “The Rose”?
A simple tune, one of my mother’s favorites. But I haven’t played it in years, since high school, actually, and the once-familiar notes now elude me.
But the empty space after a request lingers awkwardly, and the hopeful anticipation from the patient and their family squeezes my heart like a vise. To break the pressure, I test out a few chords. Dozens of pairs of eyes stare down at me from all over the building. My hands start to seize. To freeze.
Panicking, I hit a note. Seems okay.
Then another one. And a chord.
…that was supposed to be a chord.
The eyes pin me down. I see disappointment. I hear whispers. They must be about me, that it’s not as good as it sounded before, that I could do with some practice. I try again. Better. Another note. A broken chord. An octave. A melody emerges. Someone smiles. I think. Sweat soaks my shirt. Are we at the chorus yet? How much longer is there left in this song?
Singing starts somewhere to my right, also a little out of tune, and it gives me the courage to continue on, although the experience is nerve-wracking enough to make me dread song requests—despite the apparent joy they bring.
The solution, once considered, seems simple: practice playing by ear. It is impossible to predict who might be walking by on any particular day, but having the skills to reply to a request with at least a few bars of a beloved tune, thus brightening a face (and a day!), seems well worth the effort. Playing by ear, like most learnt skills, is more manageable when broken down into steps.
The first step (or requirement, really) is a general familiarity with the song and a plan for how to approach it (fast or slow? Block chords or broken? Major or minor key?). Once this is determined, one begins with the first verse. The first time is usually rocky, and the mistakes are obvious. But, with luck, a familiar melody starts to emerge by the chorus.
When the Future Is Not Now: With Optimism Comes Hope
Listen to ASCO’s Journal of Clinical Oncology essay, “When the Future Is Not Now,” by Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin. The essay is followed by an interview with Retseck and host Dr. Lidia Schapira. Drawing on cultural history, Retseck explores a dying cancer patient’s persistent optimism.
Narrator: When the Future Is Not Now, by Janet Retseck, MD, PhD
The most optimistic patient I have ever met died a few years ago of lung cancer. From the beginning, Mr L was confident that he would do well, enthusiastically telling me, “I’ll do great!” As chemoradiation for his stage III lung cancer commenced, he did do well. Until he got COVID.
And then reacted to the chemotherapy. And then was admitted with pneumonia. And then c. difficile diarrhea. And then c. diff again. But whenever we checked in with him, he reported, “I’m doing great!” He could not wait to return to treatment, informing me, “We’re going to lick this, Doc!” Of course I asked him if he wanted to know prognosis, and of course he said no, because he was going to do great. He trusted that his radiation oncologist and I would be giving him the absolute best treatment for his cancer, and we did. In the end, weak and worn out and in pain, with cancer in his lungs and lymph nodes and liver and even growing through his skin, he knew he was not doing great. But he remained thankful, because we had done our best for him. Our best just wasn’t enough.
While it can overlap with hope, optimism involves a general expectation of a good future, whereas hope is a specific desire or wish for a positive outcome. Research has shown that for patients with cancer, maintaining optimism or hope can lead to better quality of life.1,2 As an oncologist, I am in favor of anything that helps my patients live longer and better, but sometimes I also wonder if there is any real cause for optimism, because the odds of living at all with advanced cancer are just so bad. From 2013 to 2019, the 5-year relative survival rate for people with stage III lung cancer was 28%. For stage IV disease, it was just 7%.3 Immunotherapy and targeted treatments have improved outcomes somewhat, but the chances for most patients of living more than a couple of years after being diagnosed remain low. Even with our best treatments, there seems to be more reason for despair than optimism. Yet here was my patient and his persistent optimism, his faith in treatment to give him a good future, and my hope that he was right, even when I knew he was probably wrong. What drives this belief in a good future, a better future, in the face of such a rotten present? Optimism as a word and a philosophy emerged in the 18th century in the work of German thinker Gottfried Wilhelm Leibniz. As it was for my patient, optimism served as a way to negotiate the problem of human suffering.
Attempting to explain how a perfect, omniscient, and loving God could allow so much suffering, imperfection, and evil, Leibniz argued that God has already considered all possibilities and that this world is the best of all possible worlds. Leibniz did not mean that this world is some sort of a utopia; rather, the God-given freedom to choose to do good or evil, and even our vulnerable aging bodies, are good in themselves.4 If my patient were Leibniz, his optimism about his cancer could be explained by an acceptance that everything happens for a reason, his suffering somehow part of a larger whole, selected by God as the best possible way to the greatest good.
But while Mr L did take his diagnosis and various complications in stride, a belief that it was all for the best did not seem to be at the core of his optimism. Nor, in the end, did he reject his optimism, as the French philosopher Voltaire would have him do. Voltaire famously skewered Leibniz’s optimism in his 1759 novel Candide, in which Candide, having been raised on Leibniz’ philosophy, is kick
“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.
Narrator: “Why Me?”, a Question of Opportunity, by Simon Wein, MD
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 ast
But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care
Listen to ASCO’s Journal of Clinical Oncology essay, “But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care,” by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented.
Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD (10.1200/JCO.23.00805)
For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit.
Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him.
For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different.
While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions.
Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant.
When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients?
I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one’s disease trajectory.
Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload.
Afternoons in the Tower of Babel: Miscommunication in the ICU
Listen to ASCO’s Journal of Clinical Oncology essay, “Afternoons in the Tower of Babel” by Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminis Health. The essay is followed by an interview with Meisenberg and host Dr. Lidia Schapira. Meisenberg describes how oncologists and families of patients in the ICU lack a common language when discussing status and prognosis.
Narrator: Afternoons in the Tower of Babel, by Barry R. Meisenberg, MD (10.1200/JCO.23.00587)
We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week.
A patient dying of a toxicity that should have been treatable, but is not.
The oncologist's tasks:
to care for the man in the ICU bed by caring for his family; to knit up the raveled opinions of the many consultants; to forge from these strands a family's understanding of status and prognosis; to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow; to make a plan that relieves suffering and preserves dignity; and to do all this not with brute-force honesty but with patience, gentleness, and humility.
The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning.
“So, if our prayers were answered and the lung cancer is shrinking, why are we here?
“It happens this way sometimes,” I hear myself saying, instantly dismayed by my own banality.
This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1 Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart
In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes.
explain ‘stable failure,’
My first tries were themselves insufficient.
I try again; choosing carefully, using different metaphors:
-the heart as pump,
-the bone marrow as factory,
-the kidneys as filter,
-the immune system as … a loose cannon.
-the lungs as collateral damage
The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough.
Daughter-in-law, following carefully, is quick to interject,
“But yesterday you said the X-ray is ‘unchanged,’ so why does he need more oxygen?”
Did I say that? Yes, the notebook in her lap remembers all.
“You say now ‘rest the lungs’ on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle.”
Carefully, I unwrap more of our secret lexicon:
“Proven infection” versus “infection”
“Less inflamed” is still dangerously inflamed.
Five sets of eyes, five sets of ears, five sets of questions. And the notebook.
I begin again, choosing carefully. The learning is a process and occurs incrementally.
I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part.
But words are not all the tools we possess. There is also the language of the body.
The grave subdued manner, the moist eyes, and the trembling voice
Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care
Listen to ASCO’s Journal of Clinical Oncology essay, “Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care” by Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital.
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. Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. In this episode, we will be discussing his Art of Oncology article, "Market, Gift, Everyday Ethics, and the Emmanuel Levinas in Patient Care."
At the time of this recording, our guest has no disclosures.
Alan, welcome to our podcast, and thank you for joining us.
Dr. Alan Astrow: Thank you for inviting me.
Dr. Lidia Schapira: Your article has a very long title, and we've got Markets and Gifts and Ethics and a philosopher. So let's start by helping our listeners and maybe our readers to really understand the intention of this essay. What is the message of the essay?
Dr. Alan Astrow: The message of the essay is that we need to be reflecting and be mindful of the values that underlie medical care as we practice every day.
Dr. Lidia Schapira: And if I were to quiz you a little bit on that and push a little bit, what are those values? And how does perhaps market conflict with ethics and mission?
Dr. Alan Astrow: Trust, caring, honesty, thoroughness, dedication to the patient, focus on the patient and the patient's needs. The problem with market or the danger of market is that it can sometimes distract us from focusing on the patient and that patient's needs.
Dr. Lidia Schapira: So how would you respond to somebody who says, but we need organization, we need markets and finances in order to have a system that provides health care? Where do you see the front of conflict, perhaps between those who are more mission-driven, as you've just beautifully articulated and have the trust in the patient's care front and center, and those who are more concerned with the productiveness and efficiency in collections?
Dr. Alan Astrow: I have tremendous respect for my administrative colleagues who are focused on keeping hospitals solvent. I worked at a hospital earlier in my career that was not focused as it needed to be on making sure the hospital had a sound strategic plan. And that hospital is now condominiums. So, absolutely, we need to be aware of financial realities and hospitals need to pay their bills. But underlying that, we can't think that the first mission of a hospital is to earn money. The first mission of a hospital is to provide service to those in need. And then our colleagues in administration have to help us find ways to do that in a manner that's financially responsible. But we think first of the patient and that patient's needs.
And patients understand that. Patients don't want the hospitals to go bankrupt, and patients want their doctors and nurses to be paid. Patients do worry sometimes, with good reason I think, that the system may be overly focused - that's the issue, it's an issue of balance - overly focused on markets, overly focused on finance. It seems as if we're living in a world in which money is driving everything. Money is speaking with too loud a voice. That's the issue. Money is important. But the needs of the patient and what our mission is to patients have to be the driving force of the hospital. That has to be the predominant voice, the loudest voice. Markets should be serving the patient and the patient's needs, not the other way around.
Dr. Lidia Schapira: I think I understand that clearly. But now let's talk about the gift that's in the title, a
Meaningful and easy podcast - recommend for any clinician or patient at any level
Grateful for this podcast that reminds us of the humanistic side of medicine at a time when this is needed, perhaps more than ever. This podcast explores poignant topics with a reading of a narrative followed by an interview with the author by Dr. Lidia Schapira to further explore the meaning of the narrative. A concise and meaningful podcast. Easy to listen to and typically a short 20 minute listen. I enjoy the interview portion most.