Portal de Periódicos da CAPES

The Right to Decide for Someone Else (Cancer Ward)

2021; Wolters Kluwer; Volume: 5; Issue: 5 Linguagem: Inglês

10.1097/hs9.0000000000000569

2572-9241

Stephen Hibbs, Simon Hallam,

Ethics in medical practice

Foreword I am delighted to present our latest contribution from Dr Stephen Hibbs, once more delving in to literary fiction to hold a mirror to our clinical selves. In this article, Stephen explores our attempts to reconcile the many facets of the power imbalance and sometimes conflicting agendas within the doctor-patient relationship. Simon HallamNo sooner does a patient come to you than you begin to do all his thinking for him…once again, I became a grain of sand, just like I was in the camp —Oleg Kostoglotov, Cancer Ward1 Sometimes I enjoy the power I wield as a doctor. A patient enters the ward in fear, distress and danger, and my words and treatments can lessen all three. This same power scares me when I genuinely don’t know what to do and yet am looked to by patients for help and for clarity. But most of the time I am completely blind to it, and this is when my wielding of it is most dangerous. I have become a little more aware of this danger by reading Cancer Ward—a fictional novel that speaks forcefully about control, coercion and hubris in medicine.1 Alexander Solzhenitsyn wrote Cancer Ward in 1968. Both Solzhenitsyn and his main character Oleg Kostoglotov had been imprisoned in the Soviet Gulag, subjected to internal exile, and underwent cancer treatment whilst banished from their homeland. We pick up the story on a ward round led by Kostoglotov’s consultant Dontsova. After initial radiotherapy, Kostoglotov has reported such a significant improvement in his symptoms and abdominal tumor size that he can now say “when I arrived I was a dead man. Now I’m alive.” He asks when he can be discharged and Dontsova’s expression immediately sours. Kostoglotov explains that he wants to make use of whatever time he has left rather than aiming at a cure: “I don’t want to pay too high a price now for the hope of a life sometime in the future.” Dontsova’s star patient is now a difficult rebel who resists the prolonged treatment she firmly believes is necessary for him. “You don’t even understand the game you’re playing” she rebukes, and refuses to speak to him further on the open ward. They take up the argument again in her office, with Kostoglotov explaining his concerns about the side effects of the radiotherapy he is receiving. Dontsova is indignant: “Kostoglotov! Twelve sessions of X-rays have turned you from a corpse to a living human being. How dare you attack your treatment?”. Kostoglotov explains that he came to the hospital seeking relief of suffering, and not attempt to cure at any price. With implications for both medicine and the Russian political situation, Solzhenitsyn poses the central issue: “Why do you assume you have the right to decide for someone else? Don’t you agree it’s a terrifying right, one that rarely leads to good?”. Dontsova replies with deep conviction “Doctors are entitled to that right…Without that right there’d be no such thing as medicine!”. Kostoglotov is finally convinced to stay for more treatment after Dontsova produces a list of names in two columns “already dead” and “still alive,” with many crossed out from the latter and transferred to the former. She asserts that his experience of improvement is far from reality: “You’re as ill as you ever were. You’re no different to when you were admitted.” But Kostoglotov’s words stick with her and after he leaves, she cannot shake off his questions. She thinks back upon how liberally she used radiotherapy earlier in her career and her regrets when the late effects of this became clearer in the lives of many of her patients. This had “left her with a gnawing feeling of deep-rooted and unpardonable guilt.” She believes she has done more good than harm, “and yet she knew that she would sooner forget them all, her best cases, her hardest won victories, but until the day she died she would always remember the handful of poor devils who had fallen under the wheels.” Later in the story, Dontsova is forced to re-evaluate matters when she herself develops symptoms suspicious of cancer. Her career had been spent carefully constructing a systematic view of anatomy, physiology, and pathology. “Then suddenly, within a few days, her own body had fallen out of this great, orderly system. It had struck the hard earth and was now like a helpless sack crammed with organs—organs which might at any moment be seized with pain and cry out…Her own body was, as before, composed of parts she knew well, but the whole was unknown and frightening.” She is referred hundreds of miles away, to the main cancer center in Moscow. As soon as this decision is made, she experiences overwhelming change. “Her ties in life, which had seemed so strong and permanent, were loosening and breaking, all in a space of hours rather than days. In clinic and at home she was unique and irreplaceable. Now she was being replaced. We are so attached to the earth, and yet we are incapable of holding onto it.” On her final ward round she meets a pensive Kostoglotov, who has mixed feelings towards his doctors: “In one sense they had saved him, in another sense they had destroyed him. Oil and water was what they offered, in equal proportions, and the resulting mixture was no good either for drinking or for oiling the wheels.” When she asks him how he is now, a weary repeat of their old argument ensues: “‘All in all, I feel I’ve been doctored to death. I want you to let me go.’ He did not press the demand with his old fire and fury. He spoke with indifference, as though the problem was really not his and the solution too obvious to need restating… ‘It’s your decision,’ she said; ‘you do what you want. But the treatment’s not finished’.” The exhausted doctor and exhausted patient go their separate paths—one to be admitted and the other, at last, to be discharged. At the end of the novel there is a beautiful description of Kostoglotov’s day of discharge. He hurries out, lest someone changes their mind, or something detains him. He breathes the free air, delights in the shapes of the clouds and the fading moon, and goes in search of a flowering apricot tree. “It was the morning of creation. The world had been created anew for one reason only, to be given back to Kostoglotov. ‘Go out and live!’ it seemed to say.” As he steps through the hospital gates he remembers entering “as a hopeless despondent man, soaked by the January rain, expecting only to die.” Now, as he leaves them behind, his experience is “just like leaving prison.” There is rich wisdom to reflect on here. This relationship between Kostoglotov and Dontsova speaks powerfully about coercion and control in the relationship between patient and doctor. I think of the “difficult patients” that I have met, who want some of what medicine can offer but fear other parts, and whose decisions are made on different premises to mine. Dontsova failed to understand that Kostoglotov came for relief of suffering, not to maximize his chance of cure. How many times have I made wrong assumptions about a patient’s priorities? We often hurry to move from diagnosis to a treatment plan. How often have we taken the time to sit with a patient and listen for long enough that we truly understand the place their disease holds in their own conceptualization of life, and what matters most to them, now? The patient-doctor relationship is experienced as coercive by Kostoglotov, but others would find the dynamic benign or even reassuring. It is worth recognizing that this experience may be informed by previous interactions with authorities. Kostoglotov, like Solzhenitsyn, had good reason to be suspicious of authority figures, having both been unjustly imprisoned. This is a necessary reminder to me that the patient who now views me with mistrust may have their own reasons for treating authority figures, including doctors, with suspicion. Modern dynamics of medical coercion and control may look different to those in Cancer Ward but they are real. I recently observed a consultant chastise a young woman for recording the conversation in which he was explaining her husband’s new diagnosis of lymphoma. She was in her early twenties, very scared, and aware that she might forget this important information. The consultant told her it was inappropriate and made her immediately delete the recording. The inherent power dynamics in the doctor-patient relationship allowed him to get his way, and the result was that his professional anxiety took precedence over her opportunity to process this life-changing event. How do we stop abuses of power such as this that can combine to make the hospital experience uncomfortably like prison? The story draws attention to how partial the benefits of medicine are, and how limited our abilities are to predict the course of disease. Our power over cells, as well as people, is incomplete. Dontsova leads Kostoglotov down a treatment path that robs him of strength, vitality and much of the time that would be left to him, and yet fails to cure his disease. She starkly experiences the unpredictability of disease and the unsettling potency of the medical system when her own symptoms cause her to lose her role and identity and she is sent to a foreign city for treatment. Life is deeply unpredictable. Our tools to prognosticate disease are constantly improving, and yet for an individual patient we can still say very little that is secure or useful about what is to come. I hope I can maintain a humbler view of medicine’s limitations that will reduce my temptation to coerce, and to help prioritize a patient’s own illness experience and understanding of reality. I feel sorry for Dontsova, who has held some good principles with rigor, who bears such heavy professional responsibility and guilt, and who ends the story undergoing the loss of power, status and autonomy that the doctor-to-patient transition entails. I empathize with her instinct to “help a patient make the right decision,” especially when their condition seems eminently treatable. Yet both she and her patients are crushed by her belief that she can make right decisions for them and by her unwavering faith in oncology. She cannot forget her few disastrous cases because she felt so certain that she was making the right decision for those individuals. If she had honored Kostoglotov’s priorities sooner she might even have shared in his joy on the day of discharge. Can I hold my knowledge and power lightly enough that I allow my patients to find their own path, and can I be glad that their choices are honored even when those choices may shorten their life? Disclosures The authors have no conflicts of interest to disclose.