Psycho-oncology: Treating the Organ Affected by Every Cancer
Editor's Note: Jimmie Holland, MD, founder of psycho-oncology who was featured in the PBS documentary Cancer: The Emperor of All Maladies, recently pointed out to Winfield Boerckel, MBA, MSW, a social worker for CancerCare, that psychology is part of every interaction of every cancer patient at every clinical visit—and meeting the psychological needs of the patient is an essential element of care.
Winfield A. Boerckel, MBA, MSW: Hello. I'm Win Boerckel, Lung Cancer Program Director for CancerCare, a national not-for-profit organization offering support to cancer patients and those who care for them since 1944. Through a collaborative effort between CancerCare and Medscape, I'm pleased today to be speaking with Dr Jimmie Holland, a pioneer in the field of psycho-oncology, noted author, and the Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering Cancer Center in New York.
Welcome, Jimmie. I'm glad we could get together today and talk about your experience in psycho-oncology.
Jimmie Holland, MD: I'm just delighted to be here.
Mr Boerckel: In 1977 you came to New York and initiated the first psychiatric unit in a cancer hospital. That was quite groundbreaking and I imagine there was a lot of controversy and attitudes about that. How did that go for you?
Dr Holland: It was truly new. The fact that cancer is such a frightening disease, you would have thought concern about people's emotions would have been part of the development of the field, but that was not true at all. I think that oncologists, as they evolved, were so intent on trying to treat people and trying to cure them that they didn't have the time to think about how difficult it was for patients.
There was a stigma against talking to patients about the diagnosis.
Also, there was a stigma against talking to patients about the diagnosis. There was a time when we did not give patients their diagnosis. They didn't like to know what it was. The philosophy was that if we tell them they have cancer, they'll give up hope, so we won't tell them. The family would be told but not the patient. That occurred for a long, long while. It changed in the 1970s when a few public figures came out. Betty Ford and Happy Rockefeller were public figures in the mid-'70s who said, "Yes, we have cancer." They were the first public figures who talked about it.
The other piece of it was that we saw patients being cured, patients with testicular cancer and lymphoma, and leukemia in children. This was a hopeful sign. Some people began to say, "Yes, I had cancer." Before that, you didn't want to tell anybody you had cancer because you'd lose your job. You'd be like a leper. [The thought was that] you might give your cancer to somebody; there was a fear of contagion.
Mr Boerckel: In your book The Human Side of Cancer, you told a story about the taxi driver saying that he didn't want to take you [to Memorial Sloan Kettering] where The Big C was. That was 40 years ago. Where are we now?
Dr Holland: I think the stigma of cancer has diminished enormously. People were ignorant about the disease. Today it's written about, it's talked about. It's in the newspaper nine tenths of the time more than you even want to read about it. I think it becomes so commonplace that people are not so frightened of it, and they know that if you get cancer, yes, you could die, but you might also be cured. I think optimism has diminished the fears. We have a lot of good treatments and we have some sites of cancer that are highly curable today. It's a different environment in which one has cancer. And look at the range of support services available. I mean, some people want dance therapy. Some people want talk therapy with somebody like me. Some people want cancer care with someone like you.
There's a whole range of things that people can choose from to get support, and it's okay that they help themselves. A long time ago we thought that you just passively went along with it. The doctor would say, "There's nothing you can do; you have to count on my treatment." Now, people say, "I want to know about diet. I want to know about exercise. What can I be doing?"
Mr Boerckel: It sounds like you're describing a partnership between the oncologist or cancer physician and the patient. What should they bring to that partnership?
Dr Holland: What should the patient bring? I think that's a very good way of describing how both the patient and the oncologist see it today. It did not use to be that way. [The doctor] was paternalistic in the old days: "I'll tell you what to do and it's your job just to comply." The patient is seen as a partner on the team, and they make decisions together. The patient hears what the options are and has a chance to say, "I understand and this is what I want to do." It's a very much more eclectic interaction. There's a whole team with the oncologists: the social worker, the nurse, the nutritionist. Depending on the size of the place, there can be a whole range of professionals there to help.
Mr Boerckel: I often hear people talking about doctors and the oncologists. They say in the olden days—whatever that is—you had the country doctor who really did pay attention to the psychosocial issues that the patients had. There's a sense now that doctors are too busy. Sometimes the doctor's response is that there's not enough time, and yet my sense is that you feel it's very important that doctors be very involved in knowing how well their patients are coping.
Dr Holland: Yes, absolutely. If you go back to the old horse-and-buggy days and the black bag that doctors carried around, there wasn't much in that black bag. About all that poor doc had to offer was good support and tender loving care.
Mr Boerckel: That's a great point.
Dr Holland: The more the black bag filled up—the more tests that we now give—this has distanced the doctor and the patient in all fields of medicine. One of the things that I've learned in 40 years is that our emotions are exactly the same. They haven't changed one iota over millennia. It's fear. It's worry. It's what's going to happen to me and what's going to happen to my family. All of those fears are there.
What the patient has always wanted and still wants is to know that this doctor cares about me.
What the patient has always wanted and still wants is to know that this doctor cares about me. He really cares about what happens to me and about giving me the right treatment. When you feel like your doctor cares, then you're right there ready to help.
When you feel vulnerable, when you feel frightened, when you feel "I don't know what's going to happen and I could die of this," you want someone that you can call on, depend on—someone who is going to be there with you. It doesn't take an enormous amount of time to do that. I think we [as physicians] hide behind time a little too much. You can convey that in a pretty short interview. "Look, I'm here for you, buddy. We're going to do this. If this doesn't work, we'll do that, but you know I'm here for you." I preach that to our young doctors.
Mr Boerckel: How can doctors find a bit more time to hear their patients? Are there things they could be doing?
Dr Holland: It's an economic world that we're in. Medicine has become a business. The time crunch is terrible, and I think doctors have to take the line that "I cannot take care of this person if I cannot spend enough time to at least know what treatment they want, how they are doing, and how they're coping." The team helps. I think there are members of the team that can take some of that burden, but that initial sense of interaction between two people has a critical part.
Mr Boerckel: You devote a whole chapter in The Human Side of Cancer on the tyranny of positive thinking. I wonder whether you could talk about that.
Dr Holland: It's bad enough to have cancer, but when all of your family and friends are saying that you have to be positive and you have to fight this thing, and the patient is exhausted and beaten up by the treatments—it seemed to me that adding that burden to be positive was just ridiculous. We have no evidence that says being positive cures cancer. Of course, it's better to have a good attitude. You can get your treatment better. You can participate better. I call it "the tyranny of positive thinking" because it's a burden for patients to feel that they're some kind of a wimp if they're not very positive and "fighting it" hard enough.
Mr Boerckel: Both of us work with lung cancer patients. Often you have lung cancer patients who would much rather tell you that they have breast cancer or prostate cancer or some other cancer than lung cancer.What is this stigma, and what is the impact that it has on the patient?
Dr. Holland: I started doing group therapy with patients with advanced lung cancer 20 years ago. At that time there was a terrible stigma. The reason I started the group was that a woman with lung cancer came to me and said, "Would you believe I sit in the clinic and wish I had breast cancer? They've got groups and they've got all kinds of support. Nobody supports lung cancer." I said, "You're right. Let's do something about that." We started a group.
In those days there was an enormous sense that you brought it on yourself, that you smoked and it's your own damn fault that you got cancer. That added to the burden. I think it has become clearer that many people get lung cancer who never smoked. That number is increasing as time goes on. I believe—and I still do my lung group—that they would say there's less stigma than there used to be, but it's still there.
I think there's a worse stigma with tumors that have a particularly bad outcome. For example, pancreatic cancer patients don't want to tell the world they have pancreatic cancer because that carries a pretty dire prognosis in people's minds. It's a sense of not wanting to present something that's going to be looked upon by somebody else in a very negative way.
Mr Boerckel: I've had the experience whereby patients describe a real sense of isolation. Is this something that you've been working with?
Dr Holland: There's a feeling sometimes that the rest of the world looks healthy and is doing fine, and I'm here all by myself just struggling. I feel very alone with my disease. While they may have a good circle of family around them, they still feel alone in the sense that "it's just me that has a disease." It's a feeling that comes from having an illness that's serious and threatening to life.
Mr Boerckel: The feeling that everyone else looks healthy is something that a support group can help patients with.
Dr Holland: It helps a lot. You find that other people have the same feelings. [A patient might feel like saying,] "I see people walk down the street and I'm angry with them because they're healthy. I'm envious because they're healthy." Nobody wants to admit to that, but you can do it in a group where everybody is dealing with this same big dragon.
A doctor who goes through a serious illness has a very different perspective on the patient experience
Mr Boerckel: I've heard you mention that a doctor who goes through a serious illness has a very different perspective on the patient experience after they've gone through something like that.Can you talk about that a bit?
Dr Holland: Some medical schools have the students take off all of their normal clothes, put them in a Johnny shirt with no identification except a band, and make them be a patient for a day. That makes an enormous difference, to be stripped of all your identification and your identity. It puts you in a different place.
The physicians I know who have had serious illness and a bout with death will say, "I never looked upon my care of patients the same since I had that very serious illness." I think that any of us who goes through something in which death is a possibility—maybe a bad car accident where you just happen to live instead of die—those experiences are often followed by gratitude for being alive but also a perception of people and stress in a different way. I think that's called "growth" these days.
Mr Boerckel: You noted in The Human Side of Cancer that your husband, a noted oncologist, said that the one common organ involved in every cancer patient's situation is the mind.
Dr Holland: Yes. It's an interesting idea that helped me sell psycho-oncology. Every interaction that a patient has, whether it's in the clinic or in the hospital, no matter what treatment they get, no matter where they are in the world getting it, there is an interaction that's psychology. The psychology and the social issues are there.
What you do and what I do is the only specialty in cancer that's involved in every interaction with every patient in every visit. I thought that was fabulous. I use that sometimes to propose how important psycho-oncology really is. It's come late to the scene. Again, you wonder: Why so late? But I think that the stigma attached to cancer was part of it. But there is still a stigma attached to anything mental.
the only specialty in cancer that's involved in every interaction with every patient in every visit
Patients will say, "I don't want somebody to think I'm a wimp, Dr Holland. If I come see you somebody will think I'm crazy, so I don't really want your help."
Those negative influences are still there. We started using the word "distress": What is your distress level, from 0 to 10? It's similar to "How is your pain level, from 0 to 10?" Anybody can be distressed. There's no stigma attached to being distressed, right? You can be a little distressed or you can be a lot distressed.
We've used that question and asked oncologists to ask it of patients in the clinic on a routine visit. If a patient says 4 or greater (I'm pretty distressed; I'm about a 6 or 7 or 8), then we say, "I'd love to know why. Talk with my nurse or talk with me a little bit more and tell me why you're upset." Then we know to refer them to social work, to mental health, or to the chaplaincy, because one's beliefs become very important as a kind of support structure when we're very seriously worrying about the outcome of what our illness is going to be.
Helplines have been terrific. We're trying to do more virtual groups, more online forms of help. The media change all of the time, but all of them are predicated on the fact that going through cancer is a difficult experience. It can be very hard. People can use some help, and they don't have to feel as if they are wimpish because they need it.
Mr Boerckel: What inspires you to stay in the trenches and work with cancer patients and their coping?
Dr Holland: You're going to think I'm a little crazy, which might be right, but I'm still having fun. I love every day I spend at Memorial. It's exciting. I'm doing something meaningful for people, something meaningful that I know how to do to help people at a particular time in their illness when things are tough. We see many sad, sad situations, but I also get all of the rewards of helping people at those times and of seeing many people do very well. There are 14 million survivors of cancer in this country. Keep that in mind.
Mr Boerckel: Thank you so much, Jimmie. This has been a wonderful conversation.
Dr Holland: Good fun. Thanks.
Editor's Note: Jimmie Holland, MD, founder of psycho-oncology who was featured in the PBS documentary Cancer: The Emperor of All Maladies, recently pointed out to Winfield Boerckel, MBA, MSW, a social worker for CancerCare, that psychology is part of every interaction of every cancer patient at every clinical visit—and meeting the psychological needs of the patient is an essential element of care.
Winfield A. Boerckel, MBA, MSW: Hello. I'm Win Boerckel, Lung Cancer Program Director for CancerCare, a national not-for-profit organization offering support to cancer patients and those who care for them since 1944. Through a collaborative effort between CancerCare and Medscape, I'm pleased today to be speaking with Dr Jimmie Holland, a pioneer in the field of psycho-oncology, noted author, and the Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering Cancer Center in New York.
Welcome, Jimmie. I'm glad we could get together today and talk about your experience in psycho-oncology.
Jimmie Holland, MD: I'm just delighted to be here.
Mr Boerckel: In 1977 you came to New York and initiated the first psychiatric unit in a cancer hospital. That was quite groundbreaking and I imagine there was a lot of controversy and attitudes about that. How did that go for you?
Dr Holland: It was truly new. The fact that cancer is such a frightening disease, you would have thought concern about people's emotions would have been part of the development of the field, but that was not true at all. I think that oncologists, as they evolved, were so intent on trying to treat people and trying to cure them that they didn't have the time to think about how difficult it was for patients.
There was a stigma against talking to patients about the diagnosis.
Also, there was a stigma against talking to patients about the diagnosis. There was a time when we did not give patients their diagnosis. They didn't like to know what it was. The philosophy was that if we tell them they have cancer, they'll give up hope, so we won't tell them. The family would be told but not the patient. That occurred for a long, long while. It changed in the 1970s when a few public figures came out. Betty Ford and Happy Rockefeller were public figures in the mid-'70s who said, "Yes, we have cancer." They were the first public figures who talked about it.
The other piece of it was that we saw patients being cured, patients with testicular cancer and lymphoma, and leukemia in children. This was a hopeful sign. Some people began to say, "Yes, I had cancer." Before that, you didn't want to tell anybody you had cancer because you'd lose your job. You'd be like a leper. [The thought was that] you might give your cancer to somebody; there was a fear of contagion.
The Big C Stigma
Mr Boerckel: In your book The Human Side of Cancer, you told a story about the taxi driver saying that he didn't want to take you [to Memorial Sloan Kettering] where The Big C was. That was 40 years ago. Where are we now?
Dr Holland: I think the stigma of cancer has diminished enormously. People were ignorant about the disease. Today it's written about, it's talked about. It's in the newspaper nine tenths of the time more than you even want to read about it. I think it becomes so commonplace that people are not so frightened of it, and they know that if you get cancer, yes, you could die, but you might also be cured. I think optimism has diminished the fears. We have a lot of good treatments and we have some sites of cancer that are highly curable today. It's a different environment in which one has cancer. And look at the range of support services available. I mean, some people want dance therapy. Some people want talk therapy with somebody like me. Some people want cancer care with someone like you.
There's a whole range of things that people can choose from to get support, and it's okay that they help themselves. A long time ago we thought that you just passively went along with it. The doctor would say, "There's nothing you can do; you have to count on my treatment." Now, people say, "I want to know about diet. I want to know about exercise. What can I be doing?"
Mr Boerckel: It sounds like you're describing a partnership between the oncologist or cancer physician and the patient. What should they bring to that partnership?
Dr Holland: What should the patient bring? I think that's a very good way of describing how both the patient and the oncologist see it today. It did not use to be that way. [The doctor] was paternalistic in the old days: "I'll tell you what to do and it's your job just to comply." The patient is seen as a partner on the team, and they make decisions together. The patient hears what the options are and has a chance to say, "I understand and this is what I want to do." It's a very much more eclectic interaction. There's a whole team with the oncologists: the social worker, the nurse, the nutritionist. Depending on the size of the place, there can be a whole range of professionals there to help.
The Excuse of Insufficient Time
Mr Boerckel: I often hear people talking about doctors and the oncologists. They say in the olden days—whatever that is—you had the country doctor who really did pay attention to the psychosocial issues that the patients had. There's a sense now that doctors are too busy. Sometimes the doctor's response is that there's not enough time, and yet my sense is that you feel it's very important that doctors be very involved in knowing how well their patients are coping.
Dr Holland: Yes, absolutely. If you go back to the old horse-and-buggy days and the black bag that doctors carried around, there wasn't much in that black bag. About all that poor doc had to offer was good support and tender loving care.
Mr Boerckel: That's a great point.
Dr Holland: The more the black bag filled up—the more tests that we now give—this has distanced the doctor and the patient in all fields of medicine. One of the things that I've learned in 40 years is that our emotions are exactly the same. They haven't changed one iota over millennia. It's fear. It's worry. It's what's going to happen to me and what's going to happen to my family. All of those fears are there.
What the patient has always wanted and still wants is to know that this doctor cares about me.
What the patient has always wanted and still wants is to know that this doctor cares about me. He really cares about what happens to me and about giving me the right treatment. When you feel like your doctor cares, then you're right there ready to help.
When you feel vulnerable, when you feel frightened, when you feel "I don't know what's going to happen and I could die of this," you want someone that you can call on, depend on—someone who is going to be there with you. It doesn't take an enormous amount of time to do that. I think we [as physicians] hide behind time a little too much. You can convey that in a pretty short interview. "Look, I'm here for you, buddy. We're going to do this. If this doesn't work, we'll do that, but you know I'm here for you." I preach that to our young doctors.
Mr Boerckel: How can doctors find a bit more time to hear their patients? Are there things they could be doing?
Dr Holland: It's an economic world that we're in. Medicine has become a business. The time crunch is terrible, and I think doctors have to take the line that "I cannot take care of this person if I cannot spend enough time to at least know what treatment they want, how they are doing, and how they're coping." The team helps. I think there are members of the team that can take some of that burden, but that initial sense of interaction between two people has a critical part.
The Peril of Positive Thinking
Mr Boerckel: You devote a whole chapter in The Human Side of Cancer on the tyranny of positive thinking. I wonder whether you could talk about that.
Dr Holland: It's bad enough to have cancer, but when all of your family and friends are saying that you have to be positive and you have to fight this thing, and the patient is exhausted and beaten up by the treatments—it seemed to me that adding that burden to be positive was just ridiculous. We have no evidence that says being positive cures cancer. Of course, it's better to have a good attitude. You can get your treatment better. You can participate better. I call it "the tyranny of positive thinking" because it's a burden for patients to feel that they're some kind of a wimp if they're not very positive and "fighting it" hard enough.
Mr Boerckel: Both of us work with lung cancer patients. Often you have lung cancer patients who would much rather tell you that they have breast cancer or prostate cancer or some other cancer than lung cancer.What is this stigma, and what is the impact that it has on the patient?
Dr. Holland: I started doing group therapy with patients with advanced lung cancer 20 years ago. At that time there was a terrible stigma. The reason I started the group was that a woman with lung cancer came to me and said, "Would you believe I sit in the clinic and wish I had breast cancer? They've got groups and they've got all kinds of support. Nobody supports lung cancer." I said, "You're right. Let's do something about that." We started a group.
In those days there was an enormous sense that you brought it on yourself, that you smoked and it's your own damn fault that you got cancer. That added to the burden. I think it has become clearer that many people get lung cancer who never smoked. That number is increasing as time goes on. I believe—and I still do my lung group—that they would say there's less stigma than there used to be, but it's still there.
I think there's a worse stigma with tumors that have a particularly bad outcome. For example, pancreatic cancer patients don't want to tell the world they have pancreatic cancer because that carries a pretty dire prognosis in people's minds. It's a sense of not wanting to present something that's going to be looked upon by somebody else in a very negative way.
The Doctor as Patient
Mr Boerckel: I've had the experience whereby patients describe a real sense of isolation. Is this something that you've been working with?
Dr Holland: There's a feeling sometimes that the rest of the world looks healthy and is doing fine, and I'm here all by myself just struggling. I feel very alone with my disease. While they may have a good circle of family around them, they still feel alone in the sense that "it's just me that has a disease." It's a feeling that comes from having an illness that's serious and threatening to life.
Mr Boerckel: The feeling that everyone else looks healthy is something that a support group can help patients with.
Dr Holland: It helps a lot. You find that other people have the same feelings. [A patient might feel like saying,] "I see people walk down the street and I'm angry with them because they're healthy. I'm envious because they're healthy." Nobody wants to admit to that, but you can do it in a group where everybody is dealing with this same big dragon.
A doctor who goes through a serious illness has a very different perspective on the patient experience
Mr Boerckel: I've heard you mention that a doctor who goes through a serious illness has a very different perspective on the patient experience after they've gone through something like that.Can you talk about that a bit?
Dr Holland: Some medical schools have the students take off all of their normal clothes, put them in a Johnny shirt with no identification except a band, and make them be a patient for a day. That makes an enormous difference, to be stripped of all your identification and your identity. It puts you in a different place.
The physicians I know who have had serious illness and a bout with death will say, "I never looked upon my care of patients the same since I had that very serious illness." I think that any of us who goes through something in which death is a possibility—maybe a bad car accident where you just happen to live instead of die—those experiences are often followed by gratitude for being alive but also a perception of people and stress in a different way. I think that's called "growth" these days.
The Organ Involved in Every Cancer
Mr Boerckel: You noted in The Human Side of Cancer that your husband, a noted oncologist, said that the one common organ involved in every cancer patient's situation is the mind.
Dr Holland: Yes. It's an interesting idea that helped me sell psycho-oncology. Every interaction that a patient has, whether it's in the clinic or in the hospital, no matter what treatment they get, no matter where they are in the world getting it, there is an interaction that's psychology. The psychology and the social issues are there.
What you do and what I do is the only specialty in cancer that's involved in every interaction with every patient in every visit. I thought that was fabulous. I use that sometimes to propose how important psycho-oncology really is. It's come late to the scene. Again, you wonder: Why so late? But I think that the stigma attached to cancer was part of it. But there is still a stigma attached to anything mental.
the only specialty in cancer that's involved in every interaction with every patient in every visit
Patients will say, "I don't want somebody to think I'm a wimp, Dr Holland. If I come see you somebody will think I'm crazy, so I don't really want your help."
Those negative influences are still there. We started using the word "distress": What is your distress level, from 0 to 10? It's similar to "How is your pain level, from 0 to 10?" Anybody can be distressed. There's no stigma attached to being distressed, right? You can be a little distressed or you can be a lot distressed.
We've used that question and asked oncologists to ask it of patients in the clinic on a routine visit. If a patient says 4 or greater (I'm pretty distressed; I'm about a 6 or 7 or 8), then we say, "I'd love to know why. Talk with my nurse or talk with me a little bit more and tell me why you're upset." Then we know to refer them to social work, to mental health, or to the chaplaincy, because one's beliefs become very important as a kind of support structure when we're very seriously worrying about the outcome of what our illness is going to be.
Helplines have been terrific. We're trying to do more virtual groups, more online forms of help. The media change all of the time, but all of them are predicated on the fact that going through cancer is a difficult experience. It can be very hard. People can use some help, and they don't have to feel as if they are wimpish because they need it.
Mr Boerckel: What inspires you to stay in the trenches and work with cancer patients and their coping?
Dr Holland: You're going to think I'm a little crazy, which might be right, but I'm still having fun. I love every day I spend at Memorial. It's exciting. I'm doing something meaningful for people, something meaningful that I know how to do to help people at a particular time in their illness when things are tough. We see many sad, sad situations, but I also get all of the rewards of helping people at those times and of seeing many people do very well. There are 14 million survivors of cancer in this country. Keep that in mind.
Mr Boerckel: Thank you so much, Jimmie. This has been a wonderful conversation.
Dr Holland: Good fun. Thanks.
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