This blogger has been on the medical merry-go-round for a year since he was diagnosed with atrial fibrilation. When this blogger presented the cardiologist — in an early office visit — with a signed and notartized copy of a Texas DNR (Do Not Resusciate) order — the cardiologist blustered, "What is this? You're not terminal!" This blogger restrained his response and did not tell the young cardiologist (younger than the blogger's daughter): "Dr. (Name), we're all terminal. Nobody gets out of here alive." In the course of a year, this blogger has rejected a number of invasive treatments (electrical cardioversion or a cardiac pacemaker) for an alternative of a half-dozen pills every day. The moment of an imminent end-of-life comes sooner or later to everyone. If this is a (fair & balanced) form of Hobson's Choice, so be it.
[x New Yorker]
How To Tell Someone That She Is Dying
By Peter A. Ubel
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Elizabeth’s breast cancer had already spread to her bones and was now invading lymph nodes in her right armpit, causing painful swelling that kept her up at night. Today, however, as she walked into her oncologist’s office, Elizabeth felt like things were under control.
“All right, so how is your arm?” the oncologist asked.
“Actually, it’s better than it was,” she replied. “I mean, it still hurts. It’s still very swollen.”
The oncologist could see that her arm was getting worse. “I think those lymph nodes have gotten a little bigger, haven’t they?” he asked.
“I don’t think so. Well, I don’t know.”
“I think they’re bigger,” he said, as he placed his stethoscope on her chest. “A couple of breaths. Again.”
She exhaled one more time and made her position clear: “I’m still not in favor of chemo. Sorry. I’m not.”
“O.K.”
“I thought about it and … I feel like I would never go back to work. I feel like it would just do me in.”
Frustrated by the denials, the oncologist let his emotions get the best of him. “How about if this sucker is going to go and do you in?” he asked. “That’s going to happen, too. That’s the problem. It’s going to grow and kill you.”
This clinical encounter was audio recorded, in 2012, by a company called Verilogue, which conducts marketing research for the pharmaceutical industry. The conversation struck me as emblematic of the challenge that physicians face practicing medicine in an era of empowered patients. As recently as the nineteen-seventies, medical decision-making in the United States was largely a doctor-knows-best endeavor. Physicians dictated clinical care without feeling compelled to tell patients about their treatment alternatives. Frequently, in fact, they did not even inform patients of their diagnoses.
Medical practice has since undergone a paradigm shift. Physicians now recognize that patients not only have a right to information but also have the right to refuse medical care. Physicians, however, are rarely taught how to partner effectively with patients in making important medical decisions that set the proper balance between helping patients make wise choices and respecting the patients’ rights to refuse medical interventions.
This raises a fundamental question about the doctor-patient relationship: Is modern medical practice all about “patient knows best”? Or do physicians still need, on occasion, to cajole their patients into doing the right thing?
The encounter between Elizabeth and her oncologist got off to a rough start, and only got worse. After telling her that “this sucker is going to go and do you in,” she pushed back: “I feel like chemo …” she hesitated. “I don’t think it would extend my life very much.”
“That’s not true,” the oncologist said. “It does extend life significantly.… You’ve got to see reality. This [cancer] is not good. I don’t like this stuff. It’s growing out of you.”
“See, I don’t, I don’t know,” she said. “I don’t … you think it’s bigger than it was two months ago?”
“I can see your pulsations from here,” he told her, referring to the pulsing of blood in the part of the tumor growing out of her armpit. “I don’t want to see pulsations from half the room away.” No doubt that, having not seen her for two months, the growth of her tumor was more noticeable to him than to her, much the way of the growth of my middle schooler is more apparent to his grandparents, who see him once a year, than it is to me.
The oncologist was not only concerned that this patient didn’t recognize how fast her tumor was growing. He was also worried that she did not understand the consequences of further growth.
“If I did chemo,” she started to ask, “which I really do not want to do …”
“You’re going to lose your right arm,” he explained. “Do you understand that? It’s going to grow. It’s going to grow into the nerves and you’re going to lose your arm. Are you going to be able to work?”
“No … I use my arm every day.”
“That’s what I’m saying.”
The oncologist saw Elizabeth closing her mind to the only treatment he believed could prevent her from a miserable death. He knew she had a right to refuse chemotherapy, but explained that she would regret that choice.
“You’re looking at disability for no reason at all.… You’re going to become a cripple before you go. So you’re going to have a problem with quality of life. I’m not kidding you. If you knew that you were going to have a car accident today that was going to take out your right arm, would you step out of your home?”
Most well-trained physicians believe that it would be a dereliction of their duties to act merely as information providers, standing aside while patients make bad decisions. Experience provides them with an important perspective to guide treatment decisions, but a purely medical perspective can cause physicians to lose themselves in details and lose sight of the more human element of patient care, such as whether the chemotherapy that shrank the tumor would improve the patient’s quality of life.
Elizabeth’s oncologist has, of course, been face to face with patients who deny the seriousness of their illness, and has most likely seen such denial lead to premature death. Is it any surprise, then, that this history of unnecessary death might pull him away from the modern paradigm of dispassionate information provider and into the role of persuader?
When Elizabeth asked, one more time, whether he really thought her tumor was “getting a lot bigger,” the oncologist launched in to one last soliloquy, one last effort to persuade her to try some kind of chemotherapy: “I think it’s getting bigger. Whether it’s a lot or not is more of a conversational term. What I’m talking about is—I’m watching you die in slow motion. Obviously, it [the tumor] is developing. You have a threatened upper extremity which also threatens employment, ability, and function. I mean all of it is going away if that arm goes away, and I have a dozen things on the list I can do to make it better. Help me here. I mean if you don’t want to take pills, technically speaking, the first choice on the list of chemotherapy would be Taxotere once a week.”
He then described her chemotherapy choices, and concluded by saying, “I think there’s a lot of choices, and they are all fairly effective. If one fails, you go to the other. You can try, O.K.? You’ve got to tell me what you want to do. It’s just, it’s not right. It’s not right. Don’t tell me today. I’ll give you as long as you want to think about it. I don’t want you to answer right now. I’m not twisting your arm.”
“I know you’re not,” Elizabeth said. “I know you’re in the best interest for me. I understand that. I know that.”
The remainder of the conversation became much less combative and more of a give and take between the two parties rather than a lecture from on high. The patient asked lots of questions about treatments’ side effects and about whether chemotherapy would affect her ability to work. The oncologist asked Elizabeth what she thought about various side effects, about how terrible it would be to lose her hair (“I’m not real set on my hair,” she said), and about how important it was to try to live longer (to which she said, “I’ve led a very good life. I want to live a quality life”). He made sure she knew that she didn’t have to decide on chemotherapy right away. “Take your time,” he told her. “You have time. You don’t have six months, but you have a couple of weeks. So that’s plenty of time to make a good decision.” And she decided to take that time to discuss the decision with her family and pray.
By the end of this particular appointment, the oncologist had done what modern physicians are supposed to do—he informed his patient of her treatment alternatives and he left the final choice up to her. But, in the process, he left the patient little choice but to accept one of these alternatives rather than to leave her cancer untreated. We can respect the urge to preserve life that caused this oncologist to plead with his patient to fight her cancer. But we should hope that, when physicians try to help terminally ill patients understand their illnesses and comprehend their treatment choices, they do not feel the need to scare their patients to death. Ω
[Peter A. Ubel is the Dennis T. McLawhorn University Professor of Business, Public Policy and Medicine at Duke University. He is the author of You’re Stronger Than You Think: Tapping the Secrets of Emotionally Resilient People (2006) and Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together (2012). Ubel graduated from Carleton College with a BA (Philosophy, magna cum laude) and received an MD from the University of Minnesota Medical School.]
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