Transforming the Culture of Dying, Part I

THE OPEN MIND
Guest: Dr. Kathleen Foley
Title: Transforming the Culture of Dying in America
VTR: 9/26/95

I’m Richard Heffner, your host on The Open Mind, where death in America is essentially our subject today, with, I suppose, many of you wondering how in the world I would dare have chosen it. In fact, not so many years ago, death just couldn’t, wouldn’t have been so openly, frankly dealt with as it is today. Indeed, for all of us still here, its anticipation remains what we most certainly have in common, though at 70 I admit I’m closer by far.

But why then is death a problem in America? So much so that we finally do dare speak its name, indeed, do so loudly and often? Perhaps the experience of dying — and if I may read this — “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.”

Now, that is the impressive coda of the Project on Death in America, one of the several major activities of the Open Society Institute founded by George Soros. Its goal is to understand and transform the forces that have created, and now sustain, America’s current culture of death, supporting projects that illumine the social and medical context of dying and grieving in order to develop approaches that help meet the needs of dying people and their families.

Its director, and my guest today, is Dr. Kathleen Foley, head of the Pain Service at Memorial Sloan Kettering Cancer Center, and a professor of neurology, neuroscience, and clinical pharmacology at Cornell University Medical College.

You know, I thought, Dr. Foley, that perhaps I could go back to this coda of yours, of the Project on Death in America, and remind us that you here work on the notion that the possibilities for gentle closure of life are often overwhelmed by uncontrolled physical pain, and by other physical factors too. What have we learned about that uncontrolled physical pain? What gives you any sense of hope, if that is such an enormous factor in dealing with death in America?

FOLEY: Well, I think we really have this opportunity now to treat patients with pain and to provide them with a really, in fact, a comfortable death. And one of the major barriers to patients obtaining effective pain relief as they die are patients’ own fear of drugs that may provide them with pain relief, and physicians’ lack of knowledge, and, in fact, health care professionals’ in general lack of knowledge. And there have now been a series of studies that have shown in the United States that cancer patients, for example — with cancer being the second leading cause of death — that this population of patients is sorely under-medicated for their pain, is not effectively treated, and physicians who care for this population of patients have themselves been evaluated and agree that they really don’t have the tools and the knowledge to effectively treat pain. So that the evidence is that nothing would make a greater impact on controlling pain for this population of patients than clearly instituting educational programs and educating the public. So we can treat pain.

HEFFNER: So you’re saying education both of the public and…

FOLEY: Right.

HEFFNER: …of the physician, himself and herself?

FOLEY: Right. It’s critical that we educate both. And it’s critical that we educate the public. Because the public thinks that cancer is painful, and really don’t recognize and don’t know that the pain that they have from their cancer can be treated. It can be treated from their treatments from their cancer, but it can also be treated by a variety of approaches. Recently, the Agency for Health Care Policy and Research has defined guidelines for the treatment of cancer pain, and has argued that probably upwards of 90-95 percent of patients’ pain can be controlled. But the public doesn’t really know that, and they don’t know that it can be controlled, and they’re not good advocates for themselves in requesting pain relief from doctors. They want to be sort of macho, they don’t want to complain about pain, they don’t want to place that in the forefront of the discussions of their disease. And because of that, and with that problem, they often are under-treated for their pain.

HEFFNER: But how do we explain this situation in terms of physicians themselves?

FOLEY: Well, physicians also want to treat pain, and I don’t think it’s a failure of compassion. But what’s happened in really the last ten years has been the advances in our understanding of how to use drugs in patients. Our scientific underpinnings have so rapidly advanced that this whole area of pain management hasn’t been integrated into medical schools. It hasn’t been integrated into residency programs. And I think there clearly has been now the American Medical Association, the American Cancer Society, major organizations are advocating for incorporating teaching about pain, teaching about pain management, in medical school curriculums. But it hasn’t happened yet.

HEFFNER: Is their resistance because of our general American attitude towards drugs generally rather than as painkillers?

FOLEY: I think, clearly, for the public as well as for physicians, the use of drugs are markedly impacted by this fear of drugs. I mean, “Say no to drugs” has been a very powerful and an important campaign. But, and because these drugs for the cancer patient are the same drugs that are being abused, or the drugs that are treat pain. However, that’s only part of the problem. It’s a much greater problem of government restrictions. And those government restrictions have to do with very, very strong policies about regulating drugs. So, for example, physicians are under strict rules in using these drugs. Pharmacists are under strict rules in dispensing them, and patients then get all of this as a third message that they feel like they must be taking something that’s wrong or illegal. And crossing that barrier, crossing this fear-of-addiction barrier and fear of these drugs and how they should be used effectively is really, I think, one of the major thrusts that we need to inform the public in this way.

HEFFNER: How real is this fear of addiction?

FOLEY: In the cancer patient, it is really a minor issue. By that I mean that this data that we have now suggests that .04 percent of cancer patients who are treated with drugs on a chronic basis have the potential for becoming, quote, “addicts.” And what’s evolved — and I think the public is beginning to hear this and understand this — that it’s not the drugs, but it’s the person and the setting in which individuals take drugs. Cancer patients are taking these pain medications for relief of their pain. Now, they’re taking these pain medications on a regular basis. Patients don’t escalate or take more than they should take. They typically take less. They really have no interest in taking these drugs. They are not getting high on them. Yet there’s this perception that these drugs are, quote, “bad for you.” And yet, for cancer patients with significant pain, it often is the main way that they are able to function in their lives, take care of their children, take care of their families, go to work, go to function on a daily basis. And we’ve had this incredible opportunity now with the cancer-patient population to look at patients over a period of about 20 years, to follow them repeatedly during this period of time. They’ve taken chronic narcotics; they’ve taken chronic morphine, for example. They’ve been able to function. They are not selling them on the streets of New York. They are not disbursing them to their family. They are not using them recreationally. And they are using them to, in fact, function with. And so it’s in that framework, with this natural experiment, which is the first time we’ve ever had this opportunity to study a group like this, we’ve seen that addiction is a non-issue for this population, and pain control is a much more important issue for these people.

HEFFNER: Well, let me ask what may seem to you to be a strange question, because I can’t ask this with any knowledge on my own part. Could it be that physicians could respond to what you have just said, in the negative?

FOLEY: No. Not anymore.

HEFFNER: Okay. I mean, I know you’ll answer me frankly.

FOLEY: I think there’s been a period of time that we’ve had to have this clinical experience, and there also has been a period of time where we’ve had to define how we use these drugs appropriately. And within that framework, the opportunity that we’ve been able to study these groups of patients has really demonstrated and made what was a myth — that you’d become an addict — we’ve demonstrated that that’s not a reality. So it has, I think, enhanced the physicians’ comfort with using these drugs, but most importantly it’s enhanced their knowledge.

HEFFNER: Well, Mrs. Reagan said, “Just say no,” as her contribution to the general use of drugs. Do you find it unfair totally to assume that if you emphasize taking drugs for a sick and pain-wracked population, that some of that will seep into the general population? I don’t mean the drugs themselves, but the attitude will become looser? Yes, I want to use it for relaxation purposes. This patient wants to use it for God-awful-pain purposes. But essentially we can equate them. Do you think there’s any danger, any real danger, of the one spread of use flowing into society in general?

FOLEY: Well, there are always dangers when you make things more available rather than less available, and when you make them and put them in a context that really is a much more open context. But that is the truth. So you sort of have to deal with the truth and the reality of it. And in doing that, I think that we have very, very strongly made very clear distinctions to why you take analgesic drugs, why you take these drugs. You take them for pain. You don’t take them to feel good separate from pain relief. And the most interesting thing about cancer patients are that, when their pain is treated, they say, “Well, I don’t need to take that drug.” So it’s not that they are getting the sort of secondary gain from taking the drug or having some other impact. And so you begin to see these very, very different effects of the drug. And their main reason for why they were developed was to treat pain. We have almost comparable compounds within our own bodies. We have peptides that mimic morphine completely. So we already have these as our own endogenous substances. So we’re taking them in this setting for pain relief because our own endogenous system doesn’t work as well as it should in those acute, stressful periods. And more importantly, what we’ve done is, by putting it in context, we make it appropriate. So that all of the education that’s gone into making pain medications available for cancer patients, making narcotics available, making drugs like morphine available, has been to say that there’s a right place to use these drugs, that’s why they were developed. And these other areas are the wrong places to use these drugs. And when you make that black and white, and you make the distinctions clear, then it’s, I think, a very compelling reason to why one group should obtain these drugs and should not, in fact, be hurt by the other group. And the saddest thing that happens daily is that cancer patients are under-medicated, they have difficulty finding and getting their drugs in drugstores, their families are concerned that they may become addicts, and yet they’re in severe pain that’s markedly impacting on their quality of life. And we’re thinking that that’s more noble than the drug addict, that we should allow this population of patients to suffer in contrast to making drugs available broadly in our society with the risk to a smaller population.

HEFFNER: Of course I can understand better the reluctance of the patient than I can the reluctance of the physician.

FOLEY: You’re right.

HEFFNER: Now, you’re saying today in medical schools…

FOLEY: Right.

HEFFNER: …there is much better, wise training of physicians. But I gather you’re not just throwing this off, this matter of physicians, because in one of the many papers that I read here, you make the point again that, in the first place, you say, “Nothing would have a greater impact on improving cancer-pain treatment than implementing existing knowledge,” which is, in its way, a sad statement. And you say, “The knowledge of and attitudes of health-care professionals toward pain and its impact on the patient is particularly important, since both of these factors influence the priority both they and their patients place on pain treatment. Recent studies of medical students, physicians, nurses, and state medical boards, as well as comparable international studies, demonstrate a significant lack of knowledge in both the theoretical and practical understanding of analgesic drug therapy in both acute pain and cancer pain management.” And I have to admit that blows my mind. It’s astounding.

FOLEY: It is astounding. It is astounding. So what is it? What is it about pain that makes it hard for doctors to see it, to hear it, and to treat it? And not just doctors, but, in fact, our society.

HEFFNER: What is there about pain?

FOLEY: Well, if we understood that, we would solve this problem, I think. But we’re beginning to understand it. And we’re beginning to understand the following: When a patient reports pain, and is seen by a physician or a nurse in a certain context — and there are now have been three major institutions that have studied this and demonstrated this — the physician will always underrate the pain of the patient. The house officer, nurse, or physician, will underrate the pain. And the patient will rate their pain at an eight or a nine. The more, the higher on a scale the patient rates the pain, the more discordance there is between what the patient reports and what the physician or a nurse reports. So it’s this construct that this subjective symptom isn’t a priority, isn’t regarded with high regard, isn’t listened to. And we sort of continually, as physicians or as other healthcare professionals, and, in fact, the public, we tend to de-emphasize it. We keep saying, “Well, it can’t be that bad. It can’t be that terrible.” And we will consistently underrate it. So, one of the problems is: How are we ever going to treat it if we don’t agree on what it is?

HEFFNER: I saw that wonderful film that Jason Robards narrated, in which you participated, about treating pain of cancer patients in particular, and it’s clear that to become a cancer patient is a key, and to experience the pain is a key to understanding what your patients are experiencing.

FOLEY: We attempted to make that film with the sole purpose of having physicians hear other physicians who had cancer talk about their experiences in interacting with the health care professionals, and trying to make them more sensitive using these personal narratives of what the issues were.

As I said previously, I don’t think it’s a failure of compassion; but I think it’s a failure, in part, of empathy. I think it’s a failure of not hearing all the issues. I think it’s a failure of not recognizing who the patient is or the setting that they’re in. And I think it’s a failure of time.

HEFFNER: “Time.” What do you mean?

FOLEY: It takes a lot of time to take a pain history from a patient and to tease apart both the, sort of, medical aspects of the pain from the psychological aspects. And to make distinctions between a patient’s reports of pain and to decide whether it’s a physical phenomenon or a psychological phenomenon, or a mixed phenomenon. And that kind of time is no longer going to be even available in a ten-minute interview with a patient or a 20-minute interview, where a physician could potentially sort out these issues in a patient by taking a very detailed psychiatric history as well as a medical history. But we don’t have that kind of time. So in an attempt to get around that kind of a time issue, the American Pain Society has come out with guidelines that they’ve suggested that every inpatient health care delivery system should have posted at the bedside of a patient, a pain scale that was monitored at the same time you measured their blood pressure and their pulse rate. And, in fact, we’ve instituted this at Memorial. And so the nurses can rate the pain. Because the evidence we have is, if you rate it, if you measure it, then you’ll talk about it; if you talk about it, then you’ll probably try to treat it. And it’s also articulating for the nurses as well as the patient a language of pain.

HEFFNER: Do I guess wrong that nurses are much more — I guess the word is not “sympathetic,” though that may be — empathetic? They deal with the patient more directly over a longer period of time, and you say time is of the essence here. That nurses are better attuned to the pain felt by patients?

FOLEY: Yes and no. I think that the time issue is the critical issue. They spend more time with the patient, and they have the opportunity to see the patient in many different dimensions that the physician doesn’t often have that opportunity. So that I think that physicians often see glimpses of patients; whereas nurses see them chronically, and see them and understand who they are better as a person. But in the same vein, you can misjudge people. And this is commonly a problem in patients with chronic pain who have significant pain all the time, so they’re not screaming in pain, and they’re not moaning and groaning, but they’re in terrible pain. And the nurse might say, “Well, they jumped out of bed this morning, so how could they be in pain?” Or, “They were able to walk down the walk of the hospital. How could they be in pain?” And use these kinds of physical observations as a way to negate a patient’s pain. So that what I’m really, in a way, describing, is how complex assessing this subjective symptom is. Yet all of the studies we have suggest that you should believe the patient. That should be the principle. You start with believing the patient. And over time you’ll sort out the contributions of physical pain and psychological issues related to the pain.

HEFFNER: Do you think it’s true that physicians generally pay less attention to a patient’s evaluation of pain than of other aspects of their illness?

FOLEY: Well, not chest pain. Because chest pain means that you could die because it could be your heart.

HEFFNER: Ah ha. Right.

FOLEY: So chest pain clearly is a very important symptom.

HEFFNER: That scares the doctor.

FOLEY: It scares the doctor. Scares the patient so they’ll come to see a doctor. And scares the doctor because it might mean death and misdiagnosis. So there’s one pain that clearly has enormous, significant implications. The others don’t have that same implication. And there really is this belief that, well, you don’t die of pain. So it tends to be trivialized.

HEFFNER: You don’t believe that, though, do you?

FOLEY: I don’t believe that, because patients almost die of pain. What pain does to individuals is, as it has been demonstrated in animal models, is that if you continually, in the wonderful experiment that Ron Melzak did in which he took Scottie dogs and he continually provided them with a painful stimulus to the point that they really couldn’t escape easily from this stimulus, and what the dogs did was that they went off into the corner of the cage and they stopped eating, and they stopped interacting and socializing with the other animals, and they just curled up in a ball and laid on the floor.

HEFFNER: So it was fatal in another way.

FOLEY: And that is clearly what happens to patients. They become withdrawn. They can’t function. They can’t go to work. They can’t interact with their families. And they become profoundly depressed in the setting of a persistent, chronic pain.

HEFFNER: Dr. Foley, you’re head of pain at Sloan Kettering. Is there a field of medicine that perhaps can make up for the general ignorance, unwillingness, lack of sophistication about the role of pain? Can persons who are trained, as you are trained, substitute for the understanding that you wish were there on the part of internists and other doctors generally?

FOLEY: Yes and no.

HEFFNER: Can you intervene that way?

FOLEY: Yes, we can. There are pain services now in many hospitals throughout the country, and there are outpatient pain clinics. But I don’t think any of us want to intervene in that way. I think we really want to help educate physicians to be able to do this in their own practices. And I think we’re moving in that direction. It’s slow, but I’m much more optimistic now than I was 20 years ago. So I think that we have had the opportunity to raise this as a level of interest, to raise this as a priority, and to develop enough of an expertise in training of clinical role models to be able to do this. So I think that we can’t… There are specialists, and they’re needed. But the majority of people — more than the majority — 99 percent of people will be seen by their own physicians. And so we need them to advocate for their own pain relief. We need them to say to their physician, “Well, how are you going to treat my pain if I have pain?” Or, “Would you send me to someone special if I have pain?” We need to teach family members to advocate.

There’s a very nice study that the Mayday Foundation did, and looked at this issue of whether patients would advocate for their own pain versus families. And patients place pain down at about an eighth on the list of things that they would advocate for. But the family members place it as a much higher level that they would advocate for relief for an individual. So you see that this is a complex question, a complex issue.

HEFFNER: Indeed. I wonder about the patient advocates in hospitals, whether this is a role they do play, could play.

FOLEY: Right. Yes, in fact, we, you know, we encourage our patients to use the patient representatives to advocate for them if they feel that they’re not getting effective pain relief. And again, instituting this broadly in many hospitals throughout the country, are programs that are called “continuous quality improvement programs,” where the whole institution tries to, in fact, respond to improving pain in its patients. And that means making pain visible, using it on the blood pressure and temperature sheets, but also providing pathways for nurses to treat patients, and then, if the patient’s pain is not adequately controlled, to speak to the physician. And if the physician does not respond, to sort of go up the scale of hierarchy to make sure that the patient obtains pain relief. So it’s empowering not only the patients, but empowering the staff, to do a better job.

HEFFNER: We only have a minute and a half or so left, but I’m going to ask you to stay where you are when we have no time left, and let’s continue this program for next week. And I do want to.

But first, are there other cultures in which the knowledge is at the same level, but the willingness to use drugs to relieve pain is greater?

FOLEY: Probably England is slightly ahead of us. They have more drugs available to patients. They were the major advocates for using heroin in cancer patients. In fact, they used it in what was called a “Brompton cocktail.” They have a broad system of hospice care throughout the country, and have implemented narcotics in that system very well and very effectively. Yet there are many other cultures in which their laws, their federal laws, their government laws, impede the availability of drugs.

HEFFNER: More than ours.

FOLEY: Much more than ours. For example, until recently, India, which is the largest exporter of opium to the world, did not have oral morphine available for patients. Germany has incredibly strict restrictions on the availability of drugs for patients, limiting them to, you know, several days’ supply of opioids for periods of time. Countries like the Philippines, if you’re caught on the street with a dose of morphine in your pocket, you could go to jail. So that there are very, very strict rules in various cultures and countries. Again, in the attempt to prevent addiction, but that are markedly impeding the care of this population of patients.

HEFFNER: Dr. Kathleen Foley, maybe it’s my age, but this is such a fascinating subject, please do stay. We’ll do another program. Thank you for joining me on The Open Mind today.

And thanks, too, to you in the audience. I hope you join us again next time. And if you’d like to share your thoughts about our program today, please write: The Open Mind, P.O. Box 7977, FDR Station, New York, NY 10150. For transcripts, send $4 in check or money order.

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.