Minutes ago, she was not dead. Now she was in the space where expiration might be revoked by forcibly compressing her chest. Dr. Phillip Lerner decided that would not be right. As his colleagues rushed into the elderly woman’s hospital room to perform CPR, Lerner threw his body over hers to prevent it.
That was one of the most jarring stories Dr. Barron Lerner discovered when reading his father’s journals after the latter died. An infectious disease specialist at some of Boston and Cleveland's major academic hospitals beginning in the 1950s, Phillip Lerner kept journals for over 40 years during a time of upheaval over the omnipotent roles of doctors.
The woman in this case, a patient he cared for later in his career, had been in “agonizing” pain. She had been hospitalized for months and bed-bound for years. Though it was not formally documented, Lerner believed there was a tacit understanding between them as to when it was time to allow her to naturally die. After preventing the resuscitation, Lerner wrote that he had acted “in the name of common, ordinary humanity” based on “30-plus years as a physician responsible for caring and relieving the pain of [his] patients who can’t be cured.”
This sort of decision is at odds with the bioethics movement that began in the 1970s—the revolution in patients’ rights that Barron Lerner has championed as an ethicist and professor at New York University School of Medicine. That made reconciling some of the stories in the journals difficult as he read them. Lerner has predicated a career on rejecting outdated notions of physician paternalism, in favor of informed consent and patient autonomy. The era of doctors keeping patients and their families in the dark, making life-and-death decisions without them (or their next of kin), is what the bioethics movement sought to change. Especially following the scandal in Tuskegee, in which doctors purposely withheld penicillin from black men in order to observe the course of syphilis, being an ethical doctor came to mean not making decisions so much as empowering patients to make decisions.
Nonetheless, Lerner's journals showed how paternalism was born of a deep-seated devotion to patients. As a resident at Boston’s Beth Israel Hospital in the late 1950s, Dr. Phillip Lerner spent every other night in the hospital. As an attending physician, he regularly worked seven days a week. He knew his patients through and through, knew their families, knew their lives, and treated the patient as a whole person. It was in keeping with this mindset that most physicians in his generation believed it was their duty to make the best decisions possible for their patients. Anything less, including offering patients a menu of treatment options, was failing to fulfill a responsibility.
Lerner writes about this tension in his new book on the evolution of medical ethics, The Good Doctor. We talked about what it was like to read the journals, where the role of a doctor now stands, and where it might go.
Hamblin: The book begins with this story of an elderly patient that your father prevented from being resuscitated.
Lerner: This is one of those patients that had been in the hospital for months and wasn’t getting any better and was in pain and suffering, daily. My dad basically thwarted the rules that said you have to resuscitate someone if they don’t have a Do Not Resuscitate (DNR) order. It was the height of his paternalism. And he even acknowledged that.
My initial response was to feel pretty appalled because I was teaching bioethics at the time, and here was my own father violating one of the cardinal rules of bioethics. But part of the journey of my book was to immerse myself in his journals and understand his whole mindset about doctoring in patients, and in that context even though most people would say that what he did was illegal and unethical, I entirely understood his reasoning. It was just a completely futile resuscitation and just inappropriate, and he took it upon himself to prevent it.
You also write about the difficulty of your father treating members of your family.
This was the most disturbing thing for me. He crossed the line in a few instances where he was treating my grandmothers, got too involved in their cases, and actually tried to speed their deaths when they were quite ill. That was something that I again struggled with in the book. I understood what he was trying to do, but couldn’t forgive him in those cases.
This book is a lot about death and dying and ethics, but part of the fun about writing about my dad was discussing the great diagnoses that he and other doctors were able to make. My dad had trained in the 1950s and ’60s. His mentor was a guy named Louis Weinstein, one of the founding fathers of infectious diseases. Weinstein was from the era where he saw all these people with infections die, basically, and saw these atypical infections that people didn’t see anymore and he imparted this knowledge to my dad.
So my father was one of the last generations of these diagnosticians who had seen all of these atypical infections and could go on rounds when all the other doctors were scratching their heads, befuddled, and say, Aha! I saw that 30 years ago when I was training, and I know what this is. Not only do these events make for good stories because it’s sort of a detective game, but it also gave my father the legitimacy and credibility that he carried with him during his years as a doctor. In an era before CT scans and MRIs, he could not only make these diagnoses so skillfully, but then tie his medical diagnosis to his medical care for the patient and his intense interest in their lives.
Before CT scans and the like, when diagnosis and treatment was more based only on physical examination, asking questions, and intuition, that also may have informed this paternalism where the doctor just knew what was going on and what was best for the patient. That was the culture. Now we’re all about objective measures—you can show the CT scan to a patient and their family, show them where there's hemorrhage and why we should operate or shouldn't operate, for example, but before you had to trust the doctor.
In some ways the difference is epistemological; there was a different way of knowing then. Look, knowing what we know now from these tests is spectacular. Who wants to speculate? But there was a connection between knowing, just having so much clinical experience and having seen so many patients with so many complicated issues, just knowing what these diseases were like and how they were likely to progress gave my dad incredible credibility and wisdom. I guess I’m trying to get back a little of the old kind of knowing in our modern era of technology, where we also know a lot, but know it in a different way.
Some of these practices might feel clearly archaic to readers, but it really wasn’t long ago. Is the controlling doctor a relic, or should expertise sometimes still overrule patients and their families? Is it possible to know what’s best for another person?
That arc has been going on for a long time, that shift from paternalism to autonomy. If anything, I think I see almost a desperation among doctors and patients for more-meaningful interactions in an era in which time with patients is so limited, and technology is so important, and there’s all these algorithms of care. I really sense a desire from my colleagues, for example, let alone the patients, to really try to interact with one another in a way that goes beyond the science. That is a way to hearken back to my dad’s career. He was good at the science, too, but it was all about the intangibles, the art of medicine and knowing your patients and tailoring treatments to individual patients and wanting to do what was best for them. It was a good opportunity for me to look back on that period of medicine and see if there are lessons we can draw on now.
At that time, doctors were calling shots for the patients, but at the same time they probably had more time to really know the patients’ personalities and be better able to predict what they would want for themselves.
Absolutely. For good and bad, but mostly for good. Time’s a huge barrier these days.
And it seems like that’s only going to get worse as we have this increasing physician shortage.
One bit of optimism I have is about all of the modern efforts to transfer to models where doctors are part of teams—there are nurse practitioners and nutritionists and social workers who can maybe do some of the legwork and paperwork and other things they’re skilled at to at least theoretically free up the doctors to do more doctoring. At least in theory. That’s the cup half-full version.
You dealt with end-of-life care with your father with Parkinson’s disease. Had you gone through these journals extensively at that point; was that in your mind when you were making these decisions?
Yes. I guess I was the main person by dint of the fact that I was a doctor. I think that my mother and my sister in particular deferred to me. I have an uncle who’s a doctor also. But it was logical given that this is what I do for a living, that I would be the main person, and, as you suggested, having been immersed in his journals for so long. So I was very cognizant of his very vehement views about death and dying.
He had become an ardent foe of prolonging the lives of people who were gravely ill. As an infectious diseases doctor, he wound up doing consults on patients from nursing homes and with dementia and terminal cancer and they would come into the hospital and get infection after infection, and he would treat them with this antibiotic and that antibiotic, and for what purpose?
He has all these quotes in his journals saying that he felt he was doing harm, and not benefiting any of these people at all. So that whole mindset was very much front and center for me when he began to deteriorate.
The call to do no harm is the first line of the Hippocratic Oath that all doctors take, and yet at times physicians feel compelled to prolong lives in futile situations in ways that are harmful.
I know for a fact that, in the old days, doctors would look at themselves and look at a patient like this and tacitly decide to let them die, and stop being aggressive. But with the changes in society with the rise of bioethics and informed consent, it’s much more difficult to do that now. I think the changes have been for the best, but it does potentially tie the doctor’s arms in a certain amount of cases where either the patients or the families have unrealistic expectations, and it’s taken away power from doctors who want to try to do the right thing. It’s complicated because you don’t want to veer back to the way it was. I don’t think anyone is arguing that it should be okay for doctors to ignore the wishes of family members when patients are dying, by any means, but unfortunately the wisdom and experience that doctors can bring to these encounters often doesn’t have as much impact as it might.
Having reviewed all of this history, and working in the field yourself, what could we be doing better?
We are doing some things better. Compared to when I was in training, there’s much more discussion of these issues in advance. When I was a house officer, it was entirely common to encounter cancer patients that were dying and reaching the end, and no one had really discussed the fact that they were dying with them. We would come into the room and be broaching the topic with them for the first time, which was terrible. So that’s much less common now. Doctors in general and in other health professionals do a better job at broaching these subjects. And there is now much more palliative care and hospice; certain patients can take advantage of these services, which basically are ways to think about one’s condition holistically, over a period of time.
Palliative care experts like to emphasize that they are there not only for dying patients but also living patients. The whole idea is, let’s try to pay attention all along to what the treatment options are, but also what the limitations are, and to be realistic about them. That’s better, but nevertheless, we still see patients particularly at the end of life who are getting huge amounts of interventions that are not only expensive but will never help them. Things like ICU beds and very aggressive procedures. My dad felt that doctors had dropped the ball to a certain degree in letting this situation get out of hand, and we still see patients like this. It’s sad because many of them seem to be suffering and in pain and it’s very hard in some cases to pull back because of the family dynamics and the doctor dynamics. Sometimes it’s the doctors who are pushing too hard, frankly.
I think so. I think in some cases it’s hard for doctors to let go of patients that have reached end-stage conditions.
Do you see that mostly with doctors who are treating patients they’ve had longstanding relationships with, as opposed to a hospitalist or consultant?
I’m not so sure. I think it’s sometimes that doctors think that there’s hope at the end of the tunnel if they can only do one more intervention. I think it’s sometimes patients that they’ve known for a long time and they feel like they’ve let the patient down if they can’t rally them one more time. I think it’s a complex series of factors, but it’s always good to look at the situation at that moment and not bring unrealistic expectations to the table.
It seems like more people know about the idea of advance directives and are having discussions about it. Maybe it's just me in the media echo chamber where we talk about it a lot. Do you feel like, in the last decade or so, end-of-life discussion has become a lot more common?
Absolutely, even if it’s because of TV shows and the Internet, it’s a much more common topic of discussion now. Which is a good thing. Even if we don’t get specific answers sometimes, just broaching death and dying with patients and getting them to discuss it is great. And sometimes now patients will initiate the discussion, which is a good thing; we shouldn’t wait for them to do it. We’re actually now much better at it with diseases like cancer that the public and doctors see as terminal —I’m talking about metastatic cancer—but we’re not nearly as good with diseases that have an equally poor prognosis as cancer, but in which there’s not a common sense of them being terminal. Like with congestive heart failure or COPD, for example, patients may have a poor prognosis and can die at any minute, but doctors remain uncomfortable raising the subject with those folks. Often, the patients themselves don’t realize that they should be talking about it as well.