At age 70, after a long career as a neurosurgeon and best-selling author, the tables were turned on Dr. Henry Marsh. Diagnosed with cancer, and facing his own mortality, Marsh offers a humble and honest look at what it was like when a prominent doctor becomes a patient; just as scared and dependent as anyone of us would be dealing with a terrible diagnosis, with regrets, fears, and feelings of helplessness. In his latest book chronicling his experience, Marsh shares some valuable lessons that he learned from both sides of the Doctor/Patient relationship.
Phil Stieg
Today, we will be hearing the very personal and poignant story of one man’s battle against cancer – told from a unique perspective.
Dr. Henry Marsh is a brain surgeon who suddenly found himself on the other side of a life-threatening diagnosis. In his memoir entitled “And Finally”, he doesn’t shy away from sharing his deepest emotions of anger, fear, and remorse. But more than that, his book is also an appreciation of the hard-earned lessons he learned about living and appreciating whatever time we each have on our own mortal journey.
Henry, thank you for being with us today.
Henry Marsh
My pleasure.
Phil Stieg
Your first book, the New York Times best seller, Do No Harm, was really about your patients, and you describe stories in that. But, and finally, it was completely the reverse. It’s about you as the patient.
Henry Marsh
Yes.
Phil Stieg
What is your goal with this book? As I read through the whole thing, I was trying to understand whether this was a purging of the soul and retrospective analysis, or are you trying to send a message to people about what in life matters?
Henry Marsh
Certainly the first book is basically storytelling. I mean, that, of course, ultimately, I think medicine is about the stories of our patients’ lives is what makes it so incredible That’s incredibly interesting.. It’s the patients. It’s incredibly interesting. So that’s why it’s so wonderful to be a doctor.
But when I started writing that third book, it was before I had cancer. It starts by looking at my own brain on an MRI scan. And the story is I thought I was very clever and smart, and I’d be one of that small people who, as they get older, their brains don’t show much wear and tear. So I had a MRI of my brain as a joke, and. I was really quite horrified when I saw my brain. There were lots of white matter hyperintensities, evidence of vascular damage, quite a lot of atrophy. In retrospect, probably no more than any average for a 70-year-old man.
So the book really starts about this extraordinary separation as doctors. We think we’re special, we’re not patients. Right from the beginning of our careers, we learn to see patients as “other”, Disease happens to patients, it doesn’t happen to us. And you can manage to go, if you’re lucky, many decades before, of course, you understand that’s not the case. And then, as I was writing the book, I then got diagnosed with advanced prostate cancer, which is one of the better cancers to have. But what really has always fascinated me is this problem of how we have to be detached from our patient’s suffering and yet somehow respond to it as well. And it’s really very difficult.
Phil Stieg
I’d like you to reflect a little bit upon being a patient and sitting in the waiting room and waiting and staring.
Henry Marsh
Oh, yes. Well, it amused me rather than it surprised me. I mean, I’d had some personal experience of health problems before, as I discussed in my first book. But my second wife is an anthropologist and a very, very well-known, successful writer. And she has Crohn’s disease and epilepsy and has often had contact with the medical profession.
It was really she who explained to me just what it’s really like to be a patient. So when I became one myself, I was prepared for it. My cancer was treated on the state system. So I was just one person among others. To be honest, I thought, because I’m quite well known and a writer, I thought there might be a little bit of a red carpet rolled out for me. I didn’t think I deserved it, but I thought I expected it, and it certainly wasn’t. And I thought that rather than being shocked or angry, I thought that was just rather funny. It amused me.
Phil Stieg
Well, as I read through the book, however, I was trying to decide whether your approach towards your personal problem was one of detachment. You wanted to just… Number one, you put the diagnosis off forever, it seems.
Henry Marsh
Yes, very much so. Very typical medical behavior.
Phil Stieg
Yeah, but on the flip side of it, you talk about a number of times when you actually wept and cried about the process.
Henry Marsh
I got very upset. I was very frightened.
Phil Stieg
I don’t want you to describe it. I really like you more to characterize the process that you felt like you were going through of being a detached neurosurgeon to all of a sudden being an emotional patient.
Henry Marsh
Well, the emotional bit was at the start when my PSA was 130. And that raw figure on its own is pretty ominous. Not many people have a PSA that high without widespread metastases. So there was a period of two or three weeks when I was having all the necessary scans, when I assumed I probably only had a few years left to live. In the event that I didn’t have any metastatic disease or lymph node spread, and I may yet live long enough to die from something else.
Phil Stieg
So what takeaway messages do you have for us about that whole mix of emotions you went through?
Henry Marsh
I think I’m very lucky I’ve reached the age I have reached and can look back on my life, and I think I put it to reasonably good use. And that really, I think, is the important thing. What we really have to concentrate on is living well. Living well is about making the world a better place.
As doctors, we’re very lucky, we’re very privileged.
Phil Stieg
You said in your first marriage, you spent a lot of time working on your house, building your house. You were working hard, and you didn’t spend a lot of time with your children. In retrospect, would you change that?
Henry Marsh
Yes, in retrospect, I would. I think that was wrong. But that was the person I was then. But I regret that. I’m very lucky, but I have a good relationship with my three children and also with my first wife now. I think they’ve forgiven me. But in retrospect, I was very egocentric, very driven. But then at the same time, you could say it was that egotism which got me to write and to do the things I did medically.
Phil Stieg
In your reflections upon your procrastination regarding your diagnosis, you said that it’s an attribute of doctors.
Henry Marsh
It’s said to be – It’s said to be
Phil Stieg
Do you think that that’s true for you, or is there another part of your personality?
Henry Marsh
Well, no, I think it’s true for me, but as doctors, it’s quite hard because we have to separate ourselves away from our patients. When we’re medical students, we learn about all these horrible diseases that start with small, subtle symptoms. I think most of us, I’ve yet to meet a doctor who didn’t imagine they had some terrible illness when they were medical students. They have leukemia, SLE, whatever. Then you learn, no, it doesn’t happen to us. It happens to patients. You have to separate yourself.
Then when you become a doctor, you start doing unpleasant things to patients. Patients are no longer simple recipients of your love and philanthropy. You stick needles into them, you hurt them, you frighten them. And again, you have to push their anxiety away and separate yourself away from it. So this profound barrier develops in many ways, I think, emotionally between you and patients.
And when you actually become a patient yourself, you look back, I look back on my career and think, well, I probably could have been a bit kinder to my patients without necessarily losing anything. And it’s partly it’s self-protection. The more you care for your patients, the more it hurts when things go badly. And the nature of neurosurgery, particularly aneurysm surgery, is that things often go badly, not just once a year. And that conundrum of how you can be both kind and detached at the same time continues to trouble me well into retirement, looking back on my career. And I don’t know what the answer is, to be honest.
There’s a lot of talk, particularly in the States, about doctors lack empathy. Well, the strict meaning of the word empathy is you actually feel what somebody else feels. Clearly, that’s totally ridiculous. As a surgeon, you don’t want to feel what your patients are feeling. You couldn’t do the work. But at the same time, how can you understand what your patients are going through? If you haven’t got some idea of what they’re feeling. And one of the lessons of life is there’s no substitute of personal experience. And it’s rather sad that until you become a patient yourself, you don’t really understand just what a grotty, humiliating frightening, de-personalizing experience it is to be a patient. And most of us as doctors really don’t take that in.
But another theme in the book is the problem of dementia, an old age. If you lived in ’90, the quality of life is on the whole not very good.
Phil Stieg
One of the confusing things in your book, was you start talking about the MRI of your brain, and I thought, “Oh, he’s looking for metastatic disease”. But in reality, it sounds to me more like it was your preoccupation and fear of dying with dementia because your father had it.
Henry Marsh
Yes, that’s how the book started. Yes. And again, as neurosurgeons, you see people with frontal brain damage and what it does to the family and how people are all people in persistent vegetative state. Again, how the family have somebody who’s neither alive nor dead. These are the most incredibly difficult human problems
Phil Stieg
It seems like you were more preoccupied with dementia throughout the book than you were in your prostate.
Henry Marsh
In many ways, I am. I think the obsession we have, or we, many people have, that We need to live as long as possible. The meaning of life is not how long we live. The meaning of life is what good we do, what use we put to our life. And trying to live as long as possible, I think, is a big, in many ways, is a big mistake. And of course, we see that with the crisis in health care all over the world, with more and more old people and more and more ever-expensive medical technology. And this is a huge demographic transition and a huge problem.
Phil Stieg
So do you think you wept because you felt like you were not going to have-
Henry Marsh
I was frightened.
Phil Stieg
It wasn’t that you weren’t going to be able to do more good.
Henry Marsh
No, I was just frightened. It was just very pathetic fear. Simple as that.
Is it more about the process of dying, or is it about the quality of life you have while you’re dying?
Henry Marsh
I mean, there are many ways of dying. You can die quickly, you can die slowly. Despite good palliative care, it can be pretty unpleasant for a small number of people. And most of us fear the loss of autonomy, the loss of dignity that going into palliative care often involves, which is why I’ve been campaigning for years in England for legislation to allow assisted dying. I mean, it’s multifactorial.
As I discussed my mother’s death in my first book, among her last words were, “Well, we’ve said everything we’ve had to say, and it’s been a wonderful life.”
To die fulfilled is above all means that you die on good terms of your family and the people you’re closest to. It’s obviously more important than anything else. But to have had a professional life where you feel you contributed something in some ways made the world a better place, I think is very important as well. You know what they say, “there are no pockets in the shroud” . Material possessions are all very well, but they don’t last with you.
Phil Stieg
You stated that when you first got tested, your PSA was something like 130, which is a terrible number.
Henry Marsh
Yes, it’s not a very nice number, no.
Phil Stieg
Now I understand you’re in remission.
Henry Marsh
Yes, for the time being, yes.
Phil Stieg
Do you then think that all of the anxiety you had early on in retrospect, do you feel like, I guess, maybe I was a little melodramatic about it?
Henry Marsh
Yes, I was melodramatic, but also I received no guidance or support at all. Whether that was because I’m a doctor and they thought he should know it all already or whether it was just the particular team I was under, I don’t know.
But the fact that the matter is we know when we’re counseling patients about an operation, is it the critical in giving hope? And you can say, well, there’s a 5% chance you could end up very disabled or even dead. And the way you say that, well, there’s a 95% chance everything will be fine. Yes, there’s a 5% chance of trouble, but we know that the risks of doing nothing are actually greater than that. And then most patients will probably be happy with that.
The way you explain things It is critical. And the problem is patients never tell you whether you’ve done it well or not. So it’s very hard to learn whether you are doing it well or not.
Phil Stieg
As a physician, it’s difficult. You say you have a 5% chance of something bad happening, but if it happens, you’re in the 100%.
Henry Marsh
Well, of course. That’s right.
Phil Stieg
That’s the hard nut to get the patient to understand. If it happens to you, can you live with that?
Henry Marsh
Exactly. I’d also go and see my patients the night before the operation. Almost like, “Mr. Marsh, I have 100% confidence in you”. I wouldn’t say, well, actually, that having 100% confidence in me is not the same as having 100% success rate.
But I mean, again, the relationship between doctor and patient is not an entirely so rational one. You’re having to give people hope. You’re having to be realistic but supporting and giving them hope at the same time. And that can be very difficult.
I think it leads to a lot of overtreatment, particularly with malignant gliomas. And the only really valid study, which I tried to set up, it has proved impossible, of malignant gliomas is to talk to the family after the patient has died and to say, “was it worth it?” What was the quality of the time they had left? And the honest answer is, We don’t know most of the time.
Phil Stieg
Yeah. I’ve had some patients where they just won’t give up, and they go through agony from my perspective. I know. And you say, are you sure you want to keep doing this? The chemotherapies and that.
Henry Marsh
As Woody Allen said, America is a land where death is optional. If you spend enough money.
Interstitial theme music
Phil Stieg
In the book, you talk about one of the major roles of a physician is to provide the patient with hope. And your preoccupation with dementia and the negative terms that you characterize it in.
So try to give the listeners some hope in regard to this. Can you?
Henry Marsh
Well, I think that in terms of dementia, it’s very hard because by the age of 85 we have a 45% probability of having it. So the simple short answer is that living in the old age is not necessarily a very good idea. And what makes life meaningful is a happy family life, a happy social life, a sense of meaning and purpose in society rather than the alienation and impotence, which more and more people, I think, suffer from.
Phil Stieg
And you mentioned the concept of a suicide kit, but that reminded me of the movie, I can’t remember the name of it, in any case, where the person who developed dementia had the suicide kit, but by the time they realized they wanted to commit suicide, they were too demented to use the kit.
Henry Marsh
Well, exactly. I mean, assisted dying doesn’t really resolve the problem of dementia.
Phil Stieg
But you seem to strongly believe in assisted dying.
Henry Marsh
Yes, I do. I mean, to have that possibility, it’s a choice. I fully accept. It’s a common observation that many people in countries where it is legal, when they go into palliative care, they express an interest in it – but then don’t take it up. But it’s the thought, it’s the reassurance that should in the end become particularly unpleasant, it needn’t be prolonged. I think that’s a very important argument for it – subject to safeguards.
Phil Stieg
The parameters for that concept of assisted dying, is it about the patient’s desire for control? If you don’t like it, is it about religious aspects? What are the arguments around that concept, both for and against assisted dying?
Henry Marsh
I mean, if you have religious arguments against it, obviously, they don’t apply because fine, but you can’t tell other people what to do because of your religious beliefs. So the opponents to it in this country, who are a minority, but very influential, they basically say the main argument is that what they call vulnerable people, meaning older people, lonely people, disabled people, will be somehow encouraged to kill themselves. And if assisted dying is available, they will then opt for it. And slightly perversely, people say that means they have less choice. I don’t quite understand that. But that’s the main argument.
Now, to me, that’s a purely empirical argument. There, if you look at the countries where assisted dying is legal, and there are many different ways of doing it. And there are many countries where it is legal and say, does this happen? And to the best my knowledge, it doesn’t happen. There’s no evidence that significant numbers of disabled people or lonely old people are being so coerced by their families or by society to apply for assisted death. It doesn’t seem to happen.
Phil Stieg
So What is your hope when someone like me reads your book? What do you want me to learn? What do you want me to take away from the words?
Henry Marsh
That’s a good question. With the first book, it was fairly easy to say I wanted both doctors and patients to understand that doctors are human beings and it’s difficult. They have feelings. We have problems. We make mistakes, that sort of stuff. The last book, I suppose it’s about me, the arrogance of doctors. My arrogance in thinking my brain scan would look really very good, and it didn’t. The arrogance that when it was my time to have cancer, I was terribly upset and burst into tears. So I suppose that’s what it’s about. It’s about — I’ll use a terrible cliched phrase – it’s about a journey of coming back to ground. I’m another ordinary human being.
I’d like to think I tried to treat my patients as equals over the years, but since they never tell you what you’re like, and if an operation goes well, they’ll never criticize you. (laugh)
Phil Stieg
As you described yourself, it was that you wanted to maintain the emotional detachment from your patients so that you could do your job. But here, you all of a sudden became incredibly emotionally vulnerable.
Henry Marsh
Yes. I’ve always been a rather emotional person anyway. I’m not the cool, calm, detached person. Got you. Never was. Passionate!. I was passionate about neurosurgery. I still am. I still go into my hospital to teach. I just find it incredibly interesting. I need to be busy all the time, without a doubt.
Phil Stieg
In sitting here talking with you, it seems that you have really come around and you have a complete acceptance of the process that’s going on in your body now.
Henry Marsh
I think so. My next PSA is next week. I think I have come to terms of it. If it’s gone up a lot, I mean, biochemical recurrence, I need to go back on hormone therapy. I’ll be pretty pissed off. But so it goes. I got a bit better at accepting it.
Phil Stieg
You can’t change it, so you might as well enjoy life while you have it.
Henry Marsh
Well, exactly. If you worry about the future too much, if you worry about bad things in the future, you suffer twice. You suffer now and you suffer when the bad things happen. Easier said than done.
Phil Stieg
Absolutely. Easier said than done. But if you can try to keep it that simple, I try to counsel my patients to avoid the emotional roller coaster.
Henry Marsh
Well, I would tell my patients, you’re bound to go up and that’s normal. There’ll be days when you think, I’m going to fight this, I’m going to be all right. And there’ll be days when you’re deeply depressed. And as time goes by, the fluctuations get a bit less. But the important thing is distraction, to be busy, to give yourself things to do, not to spend the whole time thinking about tomorrow, get on with doing things now, today.
Phil Stieg
Can you give us three kernels of wisdom that we, people who are all going to die eventually, can take from you or take from your book and carry with us that will be useful?
Henry Marsh
Family, above all, what matters ultimately is your family. And if you can leave this life on good terms of your family, that is incredibly important.
And secondly, if you’re lucky, you can feel whether you are a trash can collector or a brain surgeon or whatever. If you can feel you were useful and helpful in some way to society at large.
What matters least of all is wealth in material possessions.
Phil Stieg
Yeah. Couldn’t agree more.
Thank you, Henry, for spending the time being with us.
Henry Marsh
It’s a pleasure.
