The Culture of Dying in America, Part II

GUEST: Dr. Kathleen Foley
VTR: 12/05/05

I’m Richard Heffner, your host on THE OPEN MIND … and I’ll introduce today’s program on death in America essentially as I did its predecessor last week and its forerunners a decade ago, supposing that many of you are wondering now as you did then that I would even dare air the subject here.

For not that long before the subject just couldn’t, wouldn’t, have been so openly, frankly dealt with on the air … which, actually, was one reason the Open Society Institute founded by philanthropist George Soros had just created the “Project on Death in America” with this as its most perceptive coda.

“The experience of dying has changed over the past decades, with many more people enduring prolonged deaths due to chronic and progressive diseases.

“The possibilities for a gentle closure of life are often overwhelmed by uncontrolled physical pain, excessive financial burden, unresponsive care plans, and emotional isolation.

“There has developed in contemporary culture a profound dread of death and the process of dying.”

Thus the goal of the “Project on Death in America” was to understand and transform the forces that created and sustained America’s culture of death, supporting projects that illumined the social and the medical context of dying and grieving in order to develop approaches to help meet the needs of dying people and their families.

The Project’s distinguished Director … my guest a decade ago, several times since, and again today … is Dr. Kathleen Foley, Attending Neurologist in the Pain and Palliative Care Service which she helped found and headed for many years at Memorial Sloan-Kettering Cancer Center and Professor of Neurology, Neuroscience and Clinical Pharmacology at Cornell’s Medical College.

Now, Dr. Foley has dedicated her career to the assessment and treatment of patients with pain, and last week I began by asking whether she believes that in the decade since we first spoke here on THE OPEN MIND, real changes have taken place in that aspect of the American culture of death and dying.

So, let’s now pick up where we left off. And Dr. Foley there are many questions that occur to me as I look at some of the many things that have appeared in the press. Lawrence Altman in The Times reports “New studies show that Americans generally receive high quality cancer care, but that closer monitoring is needed to explain significant geographic variations …

FOLEY: MmmHmm.

HEFFNER: … in practices.” What does that mean? What does it tell us? What does it make us wary about?

FOLEY: In fact that’s a report that came from the recent … from last year’s ASCO Meeting and I was the moderator of that panel … and it was the presentation of a paper that basically looked at quality care around the United States and demonstrated in cancer. And demonstrated that there really were geographical variations. Which would suggest that these national guidelines that exist weren’t being instituted in various places. And there was an attempt to suggest it was a variation in patient population … or ethnic groups, etc. It, it wasn’t that. It was, again, a style of practice. And this has been very much an emphasis in cancer care, in quality cancer care …

HEFFNER: A style of practice?

FOLEY: This was a, a variation in the … in the guidelines that various practices use. And I’ll call “style of practice”. So that if a major medical oncology group felt that this was the way that they should treat colon cancer, then is the way they did it, which would be a variation from how they did it in New York, or how they did it in Boston, or how they did it in Atlanta, Georgia. And it … this whole topic came, came to fruition to this kind of a study through a report that the Institute of Medicine did from the National Cancer Policy Board.

What they did is they looked at cancer care around the country and looked at the issue of quality care and they realized that there weren’t good ways to measure that every American was getting quality cancer care.

And coming forth from that they then identified that, that there are national guidelines for various types of tumors, for various ways they should be treated and for example, there were some groups of women who would get appropriate surgical approaches to their breast cancer, but not be followed up with adjutant chemotherapy or with radio therapy.

So they put together a taskforce through ASCO and began to look at the variations. This is not unique to cancer. For every disease in this country there are geographic variations. There are geographic variations in Medicare costs around the country. So we know there are these variations and it has given, I think, both ASCO as well as the National Cancer Institute and in general those interested in quality cancer care, a, a very serious and important issue to address.

And that is, how do we make sure that every patient who goes to their physicians gets the appropriate treatment for their breast cancer, gets the appropriate treatment for their colon cancer. So this movement forward of taking real guidelines that have been set forth and measuring each patient’s care to be sure that they’re receiving these kinds of appropriate treatments; that these guidelines are being followed. And these guidelines are now being posted, they’re available for patients to look at; they’re put forth by the National Cancer Care Network, ASCO has been supporting this, and it’s a real issue.

HEFFNER: You say that this isn’t true of cancer alone.

FOLEY: This is not true of cancer alone. This is true of diabetes, this is true of heart disease. And it appears that the number that most systems get to … this is a systems issue, as you might imagine, is that if one looks at care in this country in general, that the best performances are about 70 to 80% of patients are getting the guidelines.

With the studies that Zeke Emmanuel published … again, coming out of this panel at ASCO and from studies that the American Society of Clinical Oncology as supported, they pointed out that in fact cancer was doing pretty well. That patients, you know, somewhere between 60 to 80 percent were getting the best care.

But we need to move the 60 to 80 percent to the 80 to 100 percent. And that’s this movement forward to identify the variations, to understand what the variations are about and to correct those variations.

HEFFNER: Would you care to elaborate on the geographical differences?

FOLEY: No. Because I don’t … I think there was a clear identification that they didn’t understand what made up the geographical variations. And that’s …

HEFFNER: What do you mean?

FOLEY: … the next part of the study. Well, they didn’t … they could identify what … how, you know, it was Iowa versus Indiana, or something of that order, but they didn’t know what made it up. And so that it was a fact, but with an understanding of what the causal aspects of the facts … so I can’t elaborate on that.

But I can say that we very, very strongly argued in this report on quality cancer care that pain relief and palliative care had to be identified as quality issues. And they had to be part and integrated into every care system.

And that’s been, you know, clearly a struggle and clearly the emphasis has been there that no one should be going to a cancer center that doesn’t have a pain service, that doesn’t have a palliative care program. And yet many cancer programs don’t have fully integrated pain and palliative care services.

Yet the report that was originally issued on this whole topic emphasized how important these should be integrated into cancer care. So it’s moving forward, but palliative care and pain services within cancer centers were identified as a quality care issue.

HEFFNER: If they were gold standards …

FOLEY: MmmHmm.

HEFFNER: … what other kinds of care, what other aspects of cancer care were identified as offered, or not offered in geographically different areas?

FOLEY: They didn’t … the, the report that Larry Altman was simply looking at cancer care for like three different cancers. They were looking at it for breast cancer, for colon cancer and for lymphoma. So they just took those three tumors and looked at it.
But I think it, it points to the critical need that we have to take the translation of appropriate cancer care to its ultimate appropriate place, and that is … are patients receiving it? So, for example, I think one of the examples cited was patients who lived in rural areas might not necessarily get the radio therapy that they should receive, or would be recommended. Because they had to travel large distances and they were just not going to get it.

Or elderly patients, those over the age of 75 were less likely to get a certain type of treatment because it was too hard for them to get it, or they refused to get it.

So, when we look at geographical variations, it’s easy to identify the geography and not so easy to identify the causal factors.

So, the next step was, what are the causal factors, what’s playing a role? Is this doctor practice, is this patient follow up … is this distance traveling to the site of treatment? It’s all of the above.

HEFFNER: What’s your guess as …

FOLEY: I think it’s … I really think it’s all of the above, and I think you want to be very careful when you identify these kinds of variations, because they’re quite complex.

HEFFNER: Tell me what you mean about being careful.

FOLEY: (Laughter)

HEFFNER: Why be careful?

FOLEY: Well, because I think you, you … to say that cancer care is better in Iowa versus Indiana, doesn’t necessarily mean that it’s … if the statistics, the survival statistics are better, then … if that’s the only criteria that one’s using then that’s important to identify. But you, you need to understand what is happening in that patient population. And what access to care they have.

So how much is an access issue? How much is a payment issue? How much is a geographic travel issue? How much is an age issue and all of those variables were not studied in this. Needs to be looked at.

HEFFNER: In other areas of medicine …

FOLEY: MmmHmm.

HEFFNER: … are you just as … I was going to use the word “forgiving” …

FOLEY: MmmHmm.

HEFFNER: … but I don’t mean that … because you’re being analytic …

FOLEY: MmmHmm.

HEFFNER: … not “forgiving” or, or anything else.

FOLEY: (Laughter) Right.

HEFFNER: Is the same thing true, do you think?

FOLEY: I think that we have to continue to push for quality care. And I think we have to have measures in place measure what that quality care is.

HEFFNER: Does that mean standardized care?

FOLEY: So it means that there’s a standardized best practice that’s agreed on by a national standard and that, in the second situation, that that national standard is being met within those, those institutions. So, for example, Memorial Sloan Kettering was identified as a center of excellence where you could clearly see if patients came to Memorial for pancreatic cancer that they did better than those who went to some community hospital. There have been a series … there have been two other studies that have identified that if patients with certain types of tumors, and that was … pancreatic cancer was one of them … came to a certain institution that their survival was better.

Well, wouldn’t we want to provide that kind of survival for every patient in the country who was identified with a disease that is such a serious disease? Of course we would. So, how do you put in place the various parameters and what are those parameters? Was it the selection of the surgeon? Was it the selection of the patient who was taken to surgery? Was it the selection of the chemotherapist?

And that’s the point I’m making … it’s complicated. And this is now being studied with a major, major focus on moving the quality care to one, being identified that there’s a standard, that a quality has to be met. And how many of these programs are meeting national guidelines?

HEFFNER: Does it have anything to do, do you think with medicine being an “art” as much as a science?

FOLEY: Well, I think there’s the complexity. That I think that there is the development now of information systems that will allow us to track how patients come into the system, be able to create various categories for these different types of patients, with different types of location of disease, extent of disease and then follow them through the course.

And those information systems have to be available around the country so that you can begin to report the care patients are receiving. So there is a major being placed in cancer care. Just a major emphasis. To be able to bring those information systems together, to be able to provide the clinicians in practice with those national guidelines, to have a feed-back, to provide the kind of information that patients could also have about what are the national guidelines so that they can be assured that they’re getting what’s standard treatment. And there are now a variety of websites through the National Cancer Institute, through the National Cancer Care Network, through ASCO, that really have published what are the standard treatments for patients. So patients can look and see, “Am I getting the standard treatment? Should I be getting something different?” They’d have the opportunity to question their physicians.

HEFFNER: Do you have any misgivings about that ability now?

FOLEY: No I don’t. I think that patients who … that patients want to be as informed about their disease, want to have … some patients, not all patients … want to be able to know what choices they have or what treatments are available. And when they no longer fit into a standard category, they need to have access to what are the new protocols, who are the new investigators around the country that are providing this kind of, of studies that they might participate in.

HEFFNER: Yet, I must say though … not so many years ago, when I learned that I had cancer, going to the web was a positive …

FOLEY: Wasn’t easy.

HEFFNER: … thing in some ways.

FOLEY: MmmHmm.

HEFFNER: But pretty damn negative in others.

FOLEY: How was it negative?

HEFFNER: It was negative in my confusions …

FOLEY: Aha …

HEFFNER: … because I’m, I’m a college professor, but not all that bright about matters biological or medical …

FOLEY: Right.

HEFFNER: … and I wondered whether … or may … perhaps all your patients are much brighter than I was when I went to the computer. But I thought that there was something, I think if I had been put onto … if I had been sat down and given …

FOLEY: MmmHmm.

HEFFNER: … this to read on the computer, that would be one thing.

FOLEY: MmmHmm.

HEFFNER: But searching for it myself …

FOLEY: Right, it was hard.

HEFFNER: But you have not all that much misgiving about that.

FOLEY: Well, I, I think it’s difficult, but I think again this is for the most part, how we are now getting our information.

HEFFNER: True.

FOLEY: This is how we seek our information. And so I think there’s a growing attempt to make that information more user friendly, more individual, and some groups and some programs have done it better.

For example, again, the American Society of Clinical Oncology has an entire website devoted to people living with cancer. And provides sort of detailed information. There are other sites that allow you to call up and ask information. Here in New York there’s a group called Cancer Care that provides enormous amounts of information to patients trying to make decisions about treatment. And then the National Cancer Institute supports a 1-800 call line that is staffed around the country with people who can answer questions.

So I think it’s daunting. I think some people can handle it better. I think it’s enormously helpful for patient’s families, if the patient doesn’t use it. And we’re seeing patients come in, you know, with a handful of printed pages, saying “Well, what about this and what about that?” and, and I think it’s confusing. I think it’s very confusing because this is highly sophisticated information. You don’t have all the factors or all the information about who you are, what your tumor type is, what its various markers are, etc. But I’m impressed to see how sophisticated patients are becoming about this information.

HEFFNER: You are … you’re finding that the contemporary ….

FOLEY: Absolutely.

HEFFNER: … generation …

FOLEY: Yes. Even, even the older generation is very … is becoming increasingly more sophisticated. There are always people … and we know this (laughter) again from studies of cancer patients. Is that there are cancer patients who say, “Listen I’m going to choose the right doctor and do what they say.” And, in fact, even those who probably solicit all this information from the websites, probably do the same thing. They choose their doctor, wisely … and they tend to follow what is prescribed to them by the physician that they trust.

HEFFNER: Let me take the phrase you use and ask you, how one does it … “choose your physician wisely”.

FOLEY: Well, I think if you have cancer, I think we … those of us who care for cancer patients think that you should go to a cancer specialist. So that you should find a specialist that is geographically near you, if possible, because it would be easier for you to get your care. Is at a center that is known for treating cancer or go to a cancer center. That thirdly that you can google that physician, if you wish, and find out everything about them and what they do and what their area of expertise is. And then you see the doctor and decide whether this is someone that you can have a good experience with. And there are some people for whom the physician, as a person, is important. And there are those for whom the physician as the scientist is important. And probably the latter is the most important for patients with cancer.

HEFFNER: I remember Bob Michels saying to me when he Dean at Cornell, the medical school, you know … and I was looking for a doctor for some, and he was saying, “You want a bedside manner”.

FOLEY: (Laughter)

HEFFNER: “But wouldn’t you rather have the expertise”. And I suppose you’re saying that, too.

FOLEY: I don’t want to judge that. I mean, because I do believe that a, that a brilliant physician, who’s an expert in their field should have a bedside manner. So I’m not willing to excuse their lack of beside manner. I think that, that … we cannot control the personalities of physicians and, in fact, I think, as you well know, there has been a major approach to teach physicians empathetic behavior. We can’t …

HEFFNER: MmmHmm.

FOLEY: … teach them empathy, but we can teach them empathetic behavior. And, in fact, at least in cancer there’s been a major effort, again by ASCO, to teach physicians better communication skills.

HEFFNER: Yes, that was the other item here that I wanted to ask you about. Communications …

FOLEY: MmmHmm.

HEFFNER: … what does that mean?

FOLEY: Well, what communications skills mean are how doctors listen to patients complaints and how they communicate information to patients. And since medical oncologists or surgical oncologists are often in the position of communicating bad news to patients, they need to be sensitive about how to tell patients whatever that bad news may be. And so there’s been a great deal of expertise developed about how one listens to the concerns of patients and then communicates to them that their treatment is not as effective as they thought it was, or their chemotherapy is not working, or it may be time to switch. Or that they may have no other treatments available. That’s a pretty tough discussion to have with a patient.

And one would like to think that physicians who are trained to do that in medical school … they’re not. Although increasingly now attention is being given to that. But it’s a very hard discussion to have with a patient, particularly someone that you have grown very attached to, have followed for a long period of time … you’re telling someone else something quite serious. And there are skills that can help you do that better.

Does it … does teaching those skills work? There’s again some nice studies suggesting that if it’s done appropriately and physicians are given the opportunity to learn how to do this experientially and to do this with actors and actresses where they have the opportunity to practice their skills, that they can become better. But, in a really nice study that a fellow by the name of Chris Daugherty did in which he asked oncologists whether they, you know, told the prognosis to their patients, something like 89% of oncologists said, “Yes”, they told patients their prognosis. But they, but they said, “But”, and then he said, “wrote to him reams of information about the ‘but’, how hard it was, how distressing it was, how difficult it was for them; how they didn’t necessarily have the right words.” So that’s what communication is in cancer.

HEFFNER: They wrote him. They said, “Yes” …

FOLEY: Right.

HEFFNER: … but you’re saying what they wrote him was …

FOLEY: They’re …

HEFFNER: … not “no” but was how difficult it was.

FOLEY: How difficult it was. Yes. How they agonized over it. And I think that … well, more than I think … we now have recognized that this … that lack of communication skills makes it more difficult for physicians to provide care to seriously ill patients in whom they have to communicate bad news, i.e., that you might die from this disease. And so teaching them those communication skills is in a way providing them with just another … a tool for them to be able to think about how to talk about these issues. How to be sensitive to patients, how to anticipate how difficult it is for patients. And perhaps to help them not burn out.

HEFFNER: It brings us full circle, I gather, to what we do in our culture think about death and dying.

FOLEY: Right.

HEFFNER: And …

FOLEY: Right.

HEFFNER: … the burden is then put upon this physician.

FOLEY: And it’s a terrible burden and it weighs heavily on them because they’re, they’re trying to do the right thing for the patient; they’re trying to provide the best care. They then see themselves as failure in that experience and it’s hard for the patients to hear that information. So why is this so hard to do? Because it’s so hard for the physician to deliver the information, it’s so hard for the patient to hear the information and that’s why neither … the problems are neither the fault of the doctor, nor the fault of the patient. But it’s who we are as a culture.

HEFFNER: Do you really feel that we’ve made changes concerning who we are in our culture?

FOLEY: I think we’re … I think that the new generation, the consumer generation, the Baby Boomer generation …

HEFFNER: Yeah.

FOLEY: … wants to know everything. So I think they’re going to be more likely to want to have a lot of information. Will they want information about dying? Not clear, but there’s some evidence to suggest that they … having … are going through it with their parents now, are learning it in that way and therefore will be more open, will anticipate more of what their needs might be and be able to articulate that better. And that openness, that ability to communicate about, to talk about it, may make it easier for them to have the right choices, easier for them to receive the right care. And openly provide a better communication system, channel with their own physicians.

HEFFNER: You’re young enough not to be able to answer this question, but you’ve seen, at least part of two generations as patients. Have you seen a change?

FOLEY: Yes.

HEFFNER: Attitudes toward death?

FOLEY: No question. I had … I was taking care of a wonderful woman who wanted very much to talk about her dying and her husband … and she was in her late 80s and her husband was in his early 90s, and he said, “In my culture, in my time, in my age, if you talk about dying, it happens. You don’t talk about it.”

She was desperate to talk with him about it, but his culture was not. Now, the younger the patient, they talk about that they might die. Very aggressive in making plans for their children. Openly discuss it with their friends, engage people by e-mail networks about what’s happening to them, and are able to sort of balance the thought that they might die with the hope that they might get better treatment. And it’s an extraordinary openness.

HEFFNER: Dr. Foley, I knew that I could count on you to be upbeat at the end of a conversation …

FOLEY: (Laughter)

HEFFNER: … of a very downbeat topic. Thank you again for joining me here on The Open Mind.

FOLEY: Thank you.

HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time, and if you would like a transcript of today’s program, please send $4.00 in check or money order to The Open Mind, P. O. Box 7977, FDR Station, New York, New York 10150.

Meanwhile, as an old friend used to say, “Good night and good luck.”

N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.

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