Tue May 13, 2014
'Good Doctor' Puts Past Medical Practices Under An Ethical Microscope
Originally published on Tue May 13, 2014 3:49 pm
Dr. Barron Lerner is a doctor and the son of a doctor. He grew up thinking his father was a wonderful, gifted and caring physician, which he was. But after Lerner started studying bioethics, he began questioning some of his father's practices — practices which were typical of many doctors in the '60s.
There were times when his father would conceal information from his patient if he thought that was in the patient's best interest; there were times he didn't reveal that a patient's cancer was terminal; there were times, in the era before do-not-resuscitate orders, that his father would make that decision for a patient without consulting the family. This kind of paternalism would be considered a breach of ethics now.
In Lerner's new book, The Good Doctor, he compares his father's approach to medicine with the bioethics that are applied today. Lerner is a bioethicist, historian of medicine and internist at NYU's School of Medicine. He's the author of several books and has contributed to The New York Times column Well, The Atlantic and The Huffington Post.
His father, Meyer Lerner, was an infectious disease specialist and kept a journal in which he wrote about his medical experiences from 1961 until Parkinson's disease ended his career in 1998. Lerner drew on those diaries for his book. He joins Fresh Air's Terry Gross to discuss medical paternalism and the ethics of doctors treating their relatives.
On resuscitating end-stage patients
Certainly throughout my career, particularly in the years when I was training and subsequently, I did see patients where I felt that resuscitation was inappropriate. They were so end-stage and in such suffering that it just seemed, as my dad would've said, inhumane to pound on their chest and break their ribs. ...
These patients by and large get resuscitated. We try these days — there's palliative care teams and all sorts of interventions — we try to talk to patients and families to really make them understand the situation, but by and large most of the cases that I've been involved with do get resuscitated.
On Lerner's father occasionally not telling cancer patients they were terminal
His decisions were based on what I think he would've called "knowing the patient incredibly well." So he didn't have hard and fast rules. In some cases, when he felt that patients wanted the information and wanted to be involved in decision-making, he would give the information. But in other instances, he sort of quietly decided not to or he parsed out information in various ways.
Again, this was not uncommon in that era. In fact, oncologists routinely didn't tell patients they had cancer; they used all sorts of euphemisms. My dad rationalized this by his intense involvement with the patients and their lives and their families. He felt, indeed, that it was his duty as a doctor to obtain the information that would help him guide their decisions. He felt, for example, just telling patients what they had and what their options were was a dereliction of his duty as a doctor.
On medical "paternalism," or doctors making decisions for patients
This was all about doctors doing the best for their patients. Patients were supposed to cooperate. There was a sort of a contract and if you do what we tell you to do we're going to do the best we can do to get you better. And indeed people believe that patients who followed their doctors' orders did better because they were doing what they were supposed to do.
On the ethics of doctors treating their relatives
I think there's a consensus these days that it's a bad idea to treat your family members. There's all sorts of potential problems there. First thing, you're not going to be as objective as you otherwise might be. You've got an emotional attachment to these folks, and they have an emotional attachment to you. It's pretty hard to imagine a family member saying no to their relative who is their doctor. Most ethics organizations, or people who have weighed in on this, say that it's OK to be interested in your family, maybe give them some advice, guide them to other doctors, but to actually be involved in the day-to-day care, you're probably not going to give them the best care and there's just an inherent conflict of interest there.
On how he responds when patients ask for his opinion
I generally do tell them. I give them a lot of caveats. I will tell them, "Look, pay attention to the other options I'm telling you." And if I do have an opinion — sometimes it's a toss of a coin, I suppose — but if I do have an opinion I'll tell them and I'll explain why and I will remind them to not do it simply because I'm telling them that it's my opinion. But they really, I hope, will consider all the options.
On his own wishes for end-of-life care
I think my wife and I are on the same page about not being aggressive at the end of life. We did living wills and advance directives, I think, many years ago, once we had kids. I think I've certainly, in the hospital, seen enough end-stage suffering to be very much where my dad was for much of his life in saying that it's good to have thought about these things and to try to set some limits because it makes it easier for your family members if you've articulated these things. And in a sense, it made it easier for me with my dad at the end because he had talked about these things for so long and for so many years. ... I feel comfortable saying that if I get a severe illness and there's no chance of any sort of recovery that I would not want aggressive measures done.
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. My guest, Dr. Barron Lerner, is a doctor and the son of a doctor. He grew up thinking his father was a wonderful, gifted and caring physician, which he was. But after Barron Lerner started studying bioethics, he began questioning some of his father's practices, practices which were typical of many doctors of that generation.
BARRON LERNER: For example, there were times when his father would conceal information from his patient if he thought that was in the patient's best interest. There were times he didn't reveal that a patient's cancer was terminal. There were times in the era before do not resuscitate orders that his father would make that decision for a patient without consulting the family.
GROSS: This kind of paternalism would be considered a breach of ethics now. In Barron Lerner's new book, "The Good Doctor," he compares his father's approach to medicine with the bioethics that are applied today. Dr. Barron Lerner is a bioethicist, historian of medicine and internist at NYU's School of Medicine. He's the author of several books and has contributed to the New York Times, The Atlantic and The Huffington Post.
His late father, Dr. Meyer Lerner, was an infectious disease specialist and kept a journal in which he wrote about his medical experiences from 1961 until Parkinson's disease ended his career in 1998. Barron Lerner drew on those diaries for his book.
Dr. Barron Lerner, welcome back to FRESH AIR. Let's start with the story that opens your book, about how your father did what he thought was appropriate to ease somebody's dying and to prevent a medical intervention that would have resuscitated them.
LERNER: This was a story in which my father was involved in the care of an elderly woman with very, very severe arthritis and vascular disease. She was very ill. She'd been bed-bound for years and in this particular case had been in the hospital for months. He saw her almost every day because he was the infectious disease consult, and she kept getting infection after infection. Her skin was basically sloughing off completely, and she indicated how miserable and painful her existence was to him all the time.
He and his team were rounding one morning, and they came into the room and she was pulseless, but her body was still warm. So she had just died. This is where my dad did something very atypical. He basically forbade or attempted to forbade the other doctors and nurses from running a code, CPR, which is the thing that would normally be done in that circumstance because this patient was not a do not resuscitate patient.
So my dad said don't you dare run a code, it's time for her to die. And then when they tried to run a code, he physically placed his body on top of the patient. He lay on top of her for several minutes, sort of pushing people away, and the patient died. So this is the story that starts the book, and when I heard about it from him, he told me about it not long thereafter, I was pretty appalled.
One of the things I do is teach medical ethics, and this seemed to violate pretty much everything I taught to my students.
GROSS: Why did this violate what you were teaching to your students?
LERNER: The patients in modern day America and throughout the world, patients have the right to say if they want to be resuscitated or not, for the most part. Certainly that day, because the patient did not have a DNR order, the appropriate thing to do, legally and ethically, the vast majority of people would say, would have been to run CPR and then see what happened and re-evaluate.
But my dad felt basically that it was entirely inappropriate and inhumane and entirely counter to the practice of medicine that he had done for decades to allow that to happen.
GROSS: Was this the era before patients had do not resuscitate orders?
LERNER: This was - no, this was 1996, so it was sort of a transition era. The first DNR laws were in the 1980s. So we knew all about DNR then. Some doctors were better than others at broaching the subject, and in this particular case this patient's doctor had not pushed the issue, had not really done the paperwork. But my dad was convinced that she wanted to be do not resuscitate, and when the forms hadn't been done, and the protocol hadn't been followed, he wanted to make sure that the right thing happened, which is why he did what he did.
GROSS: Because you certainly considered that a breach of medical ethics, was your father punished in any way?
LERNER: No, he was not punished. From what I understand, there was mixed feelings. One thing he wrote down in his journals was that a lot of the doctors had been upset and disagreed, but most of the nurses had agreed with him, the people who were dealing with her most directly every day.
This was - took place in a hospital where my dad had been for decades. He was sort of the king of the hill there, very renowned, entirely devoted to his patients, and he carried a lot of clout. I would suspect that most doctors couldn't have gotten away with that, certainly in 1996, but he seems to have.
GROSS: Have you ever been in a position where you wished that you could do what your father did, even though you wouldn't do it because you consider it a medical breach of ethics?
LERNER: Absolutely. Similar cases, not exactly the same, but certainly throughout my career, particularly in the years when I was training and subsequently I did see patients where I felt that resuscitation was inappropriate. They were so end stage and in such suffering that it just seemed, as my dad would've said, inhumane to pound on their chest and break their ribs - for what purpose?
And largely these patients by and large get resuscitated. We try these days, you know, there's palliative care teams, and there's all sorts of interventions we try to do to talk to patients and families to really make them understand the situation. But by and large, most of the cases that I've been involved with do get resuscitated.
I will say that when I was a house officer, this is now 20-some-odd years ago, there was something called slow codes, which were somewhat of a variety of what my dad did, although not as flagrantly, in which people would pretend to do CPR but really wouldn't. But that's really gone by the wayside as well in an era of bioethics.
GROSS: One of the things your father regularly did was not tell patients that they were terminal. He'd sometimes withhold the information from them. How would he make his decision about whether to tell or not tell?
LERNER: His decisions were based on I think what he would have called knowing the patient incredibly well. So he didn't have hard and fast rules. In some cases when he felt that patients wanted the information and wanted to be involved in decision-making, he would give the information. But in other instances he sort of quietly decided not to, or he parsed out info in various ways.
And again, this was not uncommon in that era. In fact, oncologists routinely didn't tell patients they had cancer. They used all sorts of euphemisms. My dad rationalized this by his intense involvement with the patients in their lives and their families. And he felt indeed that it was his duty as a doctor to obtain the information that would help him guide their decisions.
So he felt, for example, just telling patients what they had and their options were was a dereliction of his duty as a doctor.
GROSS: So you point out that in your father's generation the doctors made the decisions. It wasn't like patients participating so much in the decision-making process.
LERNER: Yes. For the most part - the term that was used then and certainly in retrospect is paternalism. So this was all about doctors doing the best for their patients. Patients were supposed to cooperate. It was sort of a contract. And if you do what we tell you to do, we're going to do the best we can to get you better. And indeed people believed that patients that followed their doctors' orders did better because they were doing what they were supposed to do.
GROSS: You know, I read some of this with such ambivalence because on the one hand - I mean, your father sounds like he was such a devoted, terrific doctor. On the other hand, he also sounds paternalistic. There are times I would really like a doctor just like, just tell me what to do. It's too complicated to decide on my own. You have more experience than I do.
LERNER: That's right. I mean that was his thing. And I will tell you that many of his patients felt that, and a lot of his patients told him that, and frankly today some of my patients tell me that too. I am very good about sort of saying here's one thing you could do, here's another thing, and they say to me, hey, Doctor, what do you think I should do.
So that hasn't disappeared at all.
GROSS: And what do you do when they say what do you think I should do - do you tell them, or do you consider that to be a breach of ethics?
LERNER: No, no, I generally do tell them. I give them a lot of caveats. So I will tell them, look, pay attention to the other options I'm telling you, and I'll - if I do have an opinion, sometimes it's a toss of a coin, I suppose, but if I do have opinion, I'll tell them and I'll explain why, and I will remind them not to do it simply because I'm telling them that it's my opinion, but they really, I hope, will consider all the options.
GROSS: And how much of that is ethics, and how much of that is pre-emption of lawsuits?
LERNER: Well, I think, I would like to think it's ethics mostly. I think in some degree they go hand in hand. I mean the - you know, we do talk about lawsuits in medicine fairly often, I suppose, but I think most people are trying to do the right thing and trying to get the patient to really think about the options and do what they really want to do or what the best choice is.
And if you don't get sued as a result, that's good, too.
GROSS: If you're just joining us, my guest is Barron Lerner. He's a doctor, as well as a bioethicist. His new book is called "The Good Doctor: A Father, A Son and the Evolution of Medical Ethics." And some of the book is based on his late father's medical journals. His father was an infectious disease expert. And the book compares his father's generation and their view of medical ethics with his own. Let's take a short break, and we'll talk some more. This is FRESH AIR.
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GROSS: This is FRESH AIR, and if you're just joining us, my guest is Dr. Barron Lerner. We're talking about his new memoir, which is called "The Good Doctor," and he's a doctor, his father was a doctor. His father was an infectious disease doctor. And he compares the medical ethics of his own generation with that of his father's by looking at his father's journals and seeing how his father dealt with medicine and with end-of-life issues. The book is called "The Good Doctor." Barron Lerner is a professor of medicine and population health at NYU's School of Medicine.
One of the things that your father did that you say would be considered unethical now is that he treated family members. You write about how he treated both of your grandmothers at the end of their lives. He treated his uncle at the end of his uncle's life. What's wrong with that?
LERNER: Well, I think there's a consensus these days that it's a bad idea to treat your family members. First thing, you're not going to be as objective as you otherwise might be. You've got emotional attachments to these folks, and they have emotional attachments to you. It's pretty hard to imagine a family member saying no to their relative who's their doctor.
So most ethics organizations or people who have weighed in this say that, you know, it's OK to be interested in your family, maybe give them some advice, guide them to other doctors, but to actually be involved in the day-to-day care, you're probably not going to give them the best care, and there's just an inherent conflict of interest there.
GROSS: Let's take the example of your grandmother, your father's mother, Pearl. She had suffered a massive bleed in her brain, leaving her comatose, no chance for meaningful recovery. But as you write, that didn't mean that death was imminent. What did your father do to try to hasten death?
LERNER: My dad felt that Pearl had indicated many times in her life, and I heard her say this myself, that the thing she was most afraid of was a stroke. Her own sister had died of a stroke but had been infirm for many years, and Pearl was fiercely independent. She was in her late 80s. She had come over from Poland and had forged a life in the United States, and the notion of some kind of a stroke or bleed in the brain was the thing that everybody was most afraid of.
So when unfortunately this exact thing happened, my father felt that maintaining her in a state where she was basically unresponsive, couldn't move and was going to die was unacceptable, and he felt that it was his duty as a son to do whatever he could to minimize the duration of that.
So I don't know exactly what happened. He wrote about it a little bit; I asked him about a little bit. But my sense is that my grandmother wound up getting a lot of morphine, a drug that basically can - is used for many things, but one of the things it does is it stops people from breathing, especially if they're very sick, and they get enough of it.
So I think my grandmother died more quickly than she might have because of the morphine that she got.
GROSS: And do you object to that as a grandson? Do you object to that as a doctor and bioethicist?
LERNER: Well, I'll answer the easy one first. The bioethicist in me is nervous about that. I mean that's the sort of behavior that bioethics raised the red flag about when it came into existence, that doctors played God, and they made too many of these decisions themselves. Even if they were well-meaning, they had decided not to go through the proper channels and talk to patients and talk to families.
And, you know, the notion of speeding someone's death with morphine, certainly as a doctor, continues to make me uncomfortable. The grandson thing is harder, of course, because I heard Grandma Pearl say this many times. And I didn't see her at that period of time because I was living in another town, but I could certainly understand my father's thoughts at that time, that why prolong this, why - I mean we don't know if she was suffering or not, but on the off chance that she was, why would you let poor Pearl, having lived such a remarkable life and so not wanting this, why don't we just speed up what's inevitable and give her some relief.
So again, I'm not really condoning this, but as I worked on this project more and more, the line seemed to become blurrier.
GROSS: And a DNR, a do not resuscitate order, wouldn't have helped with her condition because it's not like her heart had failed, and she was being resuscitated.
LERNER: That's exactly true. So Pearl's example of someone who was DNR, they had done all the forms, and when she would have died, nobody would have remotely thought of resuscitating her, this - in this instance the question was do you speed things up or just let things take their course.
GROSS: Now, let's compare that to your other grandmother, your mother's mother, who was near death, and your father was making the plans for her burial and everything and thought it was truly imminent, but then she hung in there a while longer and actually returned briefly to her previous baseline. Can you talk about the issues that that family story raises for you?
LERNER: This was an even more complicated case. The background here is that my grandmother Jesse had been so sick and so inform for years and years. She was blind. She was more or less deaf. She had - I can't even begin to list the maladies she had that made her miserable on a day-to-day basis. And my mother had become her primary caretaker and was basically practically living with Jesse, and Jesse was miserable and making my mother miserable and had in several instances seemed to have gotten so sick that she was about to die, and she always rallied.
I mean it was remarkable from a medical perspective, this woman's sheer will to live, in a sense. When she got really, really sick, she was already 93, and they - she got very short of breath, and they had to take her to the hospital. And this is where my dad tried to basically do the sort of thing that he had done with Pearl. This was a few years later.
And it turns out Jesse had probably had a heart attack and was in congestive heart failure and having trouble breathing. My dad felt that this was the - should be the terminal event for her, that she had lived a remarkable life, she was in misery on a day-to-day basis. Let's just give her morphine and let things progress that way.
He met with a lot more resistance at this point. It was a few years later. He was actually no longer on the staff of the hospital, and the nurses pushed back, and he really wasn't able to do that sort of thing this time. It turned out that Jesse finally punked out, and her heart gave out, and she died during that hospitalization. What was particularly disturbing about this was that Jesse, despite being deaf and blind, still was with it enough to have participated, theoretically, in a discussion of what she did or didn't want, and my dad didn't really ask her, nor did he ask my mom.
And part of what he did, part of the reason what he did, was that - the effect that this was all taking on my mother. So that was really disturbing and highly irregular, that - I mean again, he was doing everything for the right reasons, but the toll that this was taking on my mother was one of the factors that he took into consideration when he was trying to ascertain if it made sense to try to get Jesse back home one more time or to let her die.
GROSS: And is that one of the major problems that you see if a doctor treats somebody in their family, that - like the fact that it was a terrible inconvenience for your mother, I mean more than an inconvenience. It was just really, really difficult for her to continue caring for her mother, that because your father was so intimately acquainted with that problem because he cared so much about your mother, that contributed to his decision to want to hasten your grandmother's death?
LERNER: Oh, absolutely. This is probably a textbook case study of conflict of interest. So I mean he wasn't actually her doctor during that admission, but he was certainly acting like her doctor. And he absolutely had all these other issues going on in his head about the family and what was best for his mother-in-law, who he'd known for decades and decades, and what was best for his wife and even what was best for me and my sister as far as us getting to the funeral.
I mean he was way conflicted and trying to do the right thing and trying to use all his experience to save the most people from suffering that he could. But this is a great example of how he was in far too deep.
GROSS: Dr. Barron Lerner will be back in the second half of the show. His new book is called "The Good Doctor: A Father, A Son and the Evolution of Medical Ethics." I'm Terry Gross and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross, back with Dr. Barron Lerner, author of the new book "The Good Doctor: A Father, A Son and the Evolution of Medical Ethics." It compares the standards and bioethics he was trained to follow with those practiced by his father and his generation of doctors. Barron Lerner is a bioethicist, historian of medicine and internist at NYU's School of Medicine.
When we left off, we were talking about how his father served as the doctor for his mother and mother-in-law when they were dying and the ethical questions that raises.
Your mother was diagnosed with breast cancer when she was 42 in 1977. Did your father participate in the decision-making for her health?
LERNER: My father did the decision-making for her health. I'd known something of this having lived through it, I was in high school and certainly assumed my father was sort of in charge but when I read the journals about what he was up to, it was pretty remarkable. He, you know, all of his paternalistic and loving emotions came into play when his beloved wife had cancer and he wanted to do whatever he could as a doctor to get her the best care. So he got her to a great surgeon, he got her into a randomized controlled trial that eventually gave her probably the proper medications - thank God. And he also managed the information. So he didn't even tell all the details about my mother's cancer to my mother or to me. He told some things and not others. And again, he did this because he was so paternalistic. He felt that he should bear the burden of all the knowledge that for example, that her cancer had spread up into her underarms and that she didn't need to know that and she just needed to let him be in charge.
There's one story I tell in the book where he actually drew a blood test, got a blood test drawn because he was concerned that there had been spread of the cancer and he got the blood test drawn, he didn't even tell my mother what it was for and then he checked it himself. So he really again, had gone too far even for that era, I think, in trying to micromanage the illness of another person.
GROSS: Is it possible that in doing what he did he saved your mother a lot of anxiety and mental suffering that might have been detrimental in her ability to recover?
LERNER: It's funny. I could ask my mother that question. Probably. I think partly because of the era that it was in. It was certainly - the 1970s, I mean Betty Ford had just come out with her breast cancer diagnosis and breast cancer with a very hush-hush disease, so this was not the era of women and men marching in breast cancer walks. And so I think it did probably help my mother to be shielded from some of the information, and certainly, some of the decisions that had to be made. Very congruent with what was going on at the time and, you know, she was married to a doctor and she was accustomed to him running things when it came to medical issues. So I'm sure there was absolutely a part of her death was relieved in a sense that her husband was so intimately involved with these decisions that she didn't have to be.
GROSS: And the good news is that she recovered.
LERNER: That is the great news.
GROSS: How did it affect your father to have seen his wife so sick? How did it affect him as a doctor?
LERNER: He was profoundly affected in sort of an interesting way. He'd seen patients like her many, many times. I mean he was an ID consultant, so I know he saw cancer patients all the time who had infections and certainly women in their ©40s with breast cancer. But it was one of the earliest times I think he felt that he was powerless at a doctor. Even though he was doing these machinations that we talked about and drawing these blood tests and making decisions, he basically knew that my mother was going to survive. Whether she was going to survive didn't have - there's nothing more he could do at a certain point, that this was basically going to be the disease and the medications and were they shot doing the trick. And so he felt very powerless. And fortunately, it worked out. But in some interesting way that was one of these episodes that stayed with him a long time that there were limits to what medications could do. There were limits to what brilliant doctors could do and some of this was out of his hands. And, you know, to some degree I think that was a good lesson for him because that's a lesson that all doctors have to learn, I think. But it was a particularly moving one for him because this was his wife and this was the - of all cases this is the one he should have been able to do absolutely everything for, but he realized as time went on he could do some things but not others.
GROSS: If you're just joining us, my guest is Dr. Barron Lerner. He's the author of the new book "The Good Doctor: A Father, A Son, And the Evolution of Medical Ethics." Dr. Lerner is a doctor as well as a bioethicist and a professor at NYU School of Medicine. His father was an infectious disease doctor. And the book kind of compares the medical ethics of his generation and his father's generation. And it's based in part on reading his father's journals.
Let's take a short break here and then we'll talk some more. This is FRESH AIR.
(SOUNDBITE OF MUSIC)
GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. Barron Lerner. He has a new memoir called "The Good Doctor: A Father, A Son, And the Evolution of Medical Ethics." It compares his generation of medical ethics with that of his father. Barron Lerner is a general practitioner, a professor of medicine at NYU and also a bioethicist. And his father was a doctor who specialized in infectious diseases.
You had been, you know, kind of critical before of your father for treating family members who were not only sick but near the end of life - your grandmothers, your great uncle. When your father was diagnosed with Parkinson's disease, you gradually took charge over aspects of his medical care, as your father had done for his parents. Were you ambivalent about doing that? Like how did you figure out how much to take on? Like what was appropriate for you so as a son to do and what you should stay out of?
LERNER: Well, this was a, you know, I guess what goes around comes around. It was easy for me to criticize my dad to say, you know, why are you so involved? And I did at the time, why are you managing Pearl's blood pressure medication? You don't even know anything about blood pressure medications. And then all of a sudden I found myself getting involved in his Parkinson's, not only his Parkinson's care, but also the questions about what to do at the end of his life and if he deteriorated. And part of the reason for this was frankly, with diseases like Parkinson's, once the patient starts deteriorating, I think it's fair to say that the primary doctors and the neurologists who were involved get less involved. There's really less they can do to treat the person. They've got them on the best medications possible and that's where a lot of the decisions that have to be made devolve to the family, right? So even if there's not a doctor in the family, you start getting questions, do you want to fill out a DNR form? Do you want to do an advance directive? How aggressive should we be? Those sorts of questions. In my case, I was a doctor and the son so, you know, my mother was more than happy to cede the decision-making to me and, you know, she remained involved, as did my sister and my uncle, who's also a physician. But I was the primary decision-maker and we had to confront these issues, especially when he went into a nursing home because the Parkinson's got so bad. How aggressive were we going to be? And this was the exact sort of thing that he had spent his whole career - or certainly, the end of his career - musing about and ranting about, which was people who have these very, very end-stage illnesses shouldn't get these very aggressive treatments. And all of a sudden here I was as his son being asked to decide what we should do if and when my dad deteriorated.
GROSS: And you tried to talk to your father to see what did he want and some of his answers really surprised you.
LERNER: Yeah. There's always surprises in life. Now I very much thought I knew what he was going to say. So, you know, I went and he was by this point in the nursing home and, you know, we talked vaguely about this in the past but when he wasn't too sick and, you know, he had sort of given me the standard line that he didn't want aggressive treatments. But now he was in the nursing home and, you know, he was very drowsy, but he was arousable(ph) and sometimes he could have a very coherent conversation and he knew where he was and he could answer questions. And I said look, dad, what do you want us to do if you get sick? And, you know, I tried to be specific so I said look, if you get pneumonia should we give you antibiotics? And he said, yeah, why not you should give me antibiotics maybe, you know, we could treat the thing. So I said OK. All right. But what about if you really deteriorate and you need to go back to the hospital and you even may be go on a breathing machine? And that's where he said yes, you could put me on a breathing machine. And I said what? Really? And he said well, you know, sometimes these infections turn the corner. And, you know, by this point I was not getting the answers that I'd expected or in all honesty, wanted. And, you know, we talked a little bit more and I had to stop and think about what I was going to do with that information. And this is not an uncommon phenomenon, by the way in which people who have declared something during their life and even filled out an advance directive saying, for example, they don't want any heroics at all, once they get to that point and you're actually deciding whether they're going to live or die, they change their mind and it seemed like my dad was one of those people.
GROSS: And he had been suffering with some dementia during this period. Did you know - did you ask yourself is it the dementia speaking and does it make a difference whether his answers are colored by dementia or not?
LERNER: Well, it was hard to tell. You know, I certainly in retrospect played this out in my head and I realized I probably should've had this discussion more formally earlier. He, right, it's hard to know what was him and what wasn't. I mean it's almost a metaphysical question: What was the more real him the person before he had this serious end-stage disease and could give me a totally coherent answer or the person actually living with the disease even if he had a degree of dementia. And what I wound up doing was to think about his career and his life and what it had stood for and what he had decided for so many people and I eventually decided that for whatever reasons that he had seemingly changed his mind, perhaps due to the dementia he really probably hadn't changed his mind.
GROSS: Did you have to actually make a decision based on your interpretation of what he wanted?
LERNER: We did. My mom did the paperwork and we put him basically in the hospice program of the nursing home - which meant that if he got sick and deteriorated, rather than calling the doctor and putting him on antibiotics and maybe bring him to the hospital that they would give him, make him comfortable and give him supportive care. And it was a hard decision to do. I mean even someone who was so sick and so seemingly not himself anymore, it was still a life-and-death decision. And I know people go through this all the time. It's so challenging and so difficult. But we felt - and my mom and sister agreed - that we felt that in his case, at least we were doing the right thing and that that was the way to go. And indeed, when he got some kind of infection at the nursing home that we never quite figured out the details of and he seemed uncomfortable and short of breath, he got morphine, the exact drug that he had used with my grandmothers - or tried to use - and died within about 24 hours.
GROSS: How sick had he been before that?
LERNER: He was - he had been deteriorating from his Parkinson's. He was getting worse and worse. Fortunately, we had all been there for his 80th birthday and he had had moments of his old self. But he was very groggy and it was so hard for him to maintain any sort of coherent conversation. He really wasn't himself anymore. To the degree that he was suffering, it's very hard to say. He certainly was didn't seem to be in pain and wasn't complaining about anything, which in a sense made it a little harder to make the decision. I think if he'd been in pain and suffering it would have been easier for all of us to say look, why perpetuate this at all? But he sort of was content. I mean he was still eating. When we came when he was having a good day he could interact with us, so it was a very tricky decision.
GROSS: You had seen your father as a doctor. What kind of patient was he and did he surprise you with the kind of patient that he was?
LERNER: You know, he was like a lot of patients. He was early on in his Parkinson's he was sort of a typical doctor-patient, which was first he didn't want to take any medication and then he was questioning what the doctors were doing and micromanaging his own care, which I think a lot of people with medical knowledge tend to do. I think some of its based on their actual knowledge and some of it is a denial mechanism to say hey, I'm really not that sick or I'm still in charge here. Later on as he got sicker, he became more docile and frankly, he wasn't really up to objecting to pretty much anything. But interestingly, he became one of the sorts of patients who basically listened to his doctors or listened to his son or his wife and did what he was told - which was a throwback, of course, to the patients he had treated for years and years.
GROSS: Your father was in a nursing home at the end of his life. He had been a doctor. He'd treated patients in a home like that. You had worked in a home like that. And you describe how you walked in shortly after he was admitted and saw him in a wheelchair sleeping with his head hanging down and you remember seeing that image when you were volunteering at a nursing home as a teenager.
And you write: Now he was one of them. And I think so many people have gone through that experience of seeing, like, an elderly loved one in that position of looking like one of the people you'd always thought of as the faceless people, you know, the personality-less people who were just kind of in the wheelchair in the nursing home with their head dangling down. What was that experience like for you? Especially since your father was such, you know, an esteemed doctor.
LERNER: It was very sad. As you said, he had been the medical director of another nursing home in Cleveland and I remember when I was volunteering there, I mean, he was king of the world there. The first thing he was, as I said, a renowned doctor and here he was sort of helping out running this nursing home and all the patients revered him.
And he took much more time, as I recall, with nursing home patients than I think many doctors who worked in nursing homes at the time did. So I remembered him as this dynamo, helping people out and then here we were in another nursing home and he was the exact sort of patient that I remembered seeing so many years before.
And it was sad. It was the, I guess, cycle of life right in front of me and here he was, powerless in a situation where he had once been so powerful. And, you know, it was very sad. And I, you know, nursing homes, I think, do a great service because they're dealing not only with patients who are so sick and like this, but the families who come in and see their loved ones like this.
And I think that certainly the best facilities understand that dynamic intimately and do the best they can to try to help patients and families deal with something that is so jarring, in a sense, and such a detour from the person's earlier life.
GROSS: Because we've talked so much about end of life issues and how your father dealt with that as a doctor and as a dying man, I'm wondering, you know, since you're a doctor yourself what kind of thought you've given to your end of life issues for yourself. If you don't mind addressing that.
LERNER: No, that's fine. You know, I think my wife and I are on the same page about not being aggressive at the end of life. We did living wills and advanced directives, I think, many years ago when once we had kids. And I think I've, certainly in the hospital, seen enough end-stage suffering to be very much where my dad was for much of his life in saying that it's good to have thought about these things and to try to set some limits.
Because it makes it easier for your family members, right, if you've articulated these things. In a sense it made it easier for me with my dad at the end because he had talked about these things for so long and for so many years, even though he had seemingly changed his mind. So, you know, I feel comfortable saying that, you know, if I get a severe illness and there's no chance of any sort of recovery that I would not want aggressive measures done.
GROSS: Thank you so much for doing this.
LERNER: Thank you so much.1
GROSS: Dr. Barron Lerner is the author of the new book "The Good Doctor: A Father, a Son, and the Evolution of Medical Ethics." You can read the first chapter on our website freshair.npr.org. Coming up, Ken Tucker reviews the new album by Ray LaMontagne produced by Dan Auerbach of the Black Keys. This is FRESH AIR.
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