The Culture of Dying in America, Part I

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 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 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 I want to begin 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. Do you think much has happened in this decade?

FOLEY: Yes and no. Clearly the issues have been, I think, put much more out to the public for discussion and for open discussion and if one just reflects on what happened in the Terry Shiavo case you would suggest that perhaps we had not succeeded at all in this kind of discussion about distinctions between, for example, brain death, the rights of a patient, autonomy, the rights of parents and family members.

But if you look, I think, at the last ten years, what has happened that is so dramatic is the, the focus that we had in our Project on Death in America, was to focus at the medical issues as best we could. Because clearly if one needed to change medicine to address this issue you needed to change it from within.

And so one of our major efforts was to focus on advancing pain and palliative care programs within academic medicine, within established medicine. And so the reports that came out from the Institute of Medicine identified the problem, which sadly said that Americans’ care at the end of life was neither competent or compassionate.

Those are pretty strong words. And subsequent to that with the support that we made of our faculty scholars with the extraordinary support the Robert Wood Johnson Foundation put into infrastructure, to social issues, to policy issues … along with our grant making activities, were we are now is that a million Americans receive hospice care every year.

And there are about 2.5 or 2.6 million who die each year. So we’re almost at 40 to 50 percent are at the end of life receiving hospice care. Hospitals throughout the country are developing palliative care programs because they see that it improves quality in their institutions and clearly may even cut costs, which is an essential issue for them to institute new programs.

The specialty of palliative medicine, which was clearly not a specialty before, not even “boarded”, with not such clear standards, now has real standards. There are 47 Fellowship programs in the country. 20 of them are fully approved and the specialty will be certified by the Medical Board of Medical Specialties hopefully in the next one to two years; that process is moving forward.

So I would say from the physician, medical establishment infrastructure perspective … enormous inroads have been made.

HEFFNER: Yet you say … when I asked the question … yes and no … and then you give me all the “yeses”.

FOLEY: Right. And then the “no” is … I think a point that I’ve recently made is, you know, if you build this field, will they come? And so the real issue is, will Americans come to accept this issue … accept that they are dying, make choices related to how they’re dying and I think that’s the question mark … those are the issues and the extraordinary ambivalence any individual feels at they face a serious life-threatening illness and make choices.

And so, as you know, Patrick Henry said, clearly, death is always a second choice for an American. And recognizing that, we’re going to … we haven’t, I don’t think fully understood the choices, and the way that people make those choices as they approach end of life care.

And so our focus, obviously, through out project was to just open up the top and let people understand there were choices. That they didn’t have to take treatment if they didn’t wish treatment, or they didn’t … shouldn’t accept treatment being refused to them if they wanted treatment. So there were these wide range of choices. But I think the real issue is coming to terms with it.

HEFFNER: What do you mean by that?

FOLEY: Well, if … again, if we look to the public and we look at the general public, you know something like 20 or 25 percent of individuals have completed any type of an advance directive. Why is that? Why will they not be willing to tell a family member what they would want if they were incapacitated or not competent? What is that about? Is that educational? Is that attitudinal? Is that behavioral? Is it cultural?

It’s all of those things. In fact, we’ve looked very carefully and supported specific initiatives in various different cultural groups and ethnic groups.

HEFFNER: What do you find?

FOLEY: In African American minority groups there’s a … been a great concern about the use of advance directives and lack of use of advance directives. And then distrust. And a view that hospice care is second class care. So there’s a, a lack of trust in the health care system in viewing that good end of life care that we would describe encompassed by hospice and palliative care is shunned by a minority African American population because they think it’s not the best care that they should receive.

And that being in an Intensive Care Unit would be the appropriate care for them, not to be in hospice unit. So this is educational; this is attitudinal, and one initiative that was developed and is now being led by Rich Payne who directs a center at the … at Duke … on a Center to Advance End of Life Care … has very much focused on African American minority populations and what the issues have been for them. So it’s sort of addressing that.

HEFFNER: And in other groups, do we find the same pattern? Or are you suggesting it is primarily in the African American community that there is this reluctance?

FOLEY: There were always issues of cultural competency in the way that we talk about these issues with various populations. I would say that that group has been the best studied and best identified. And, in fact, there’s been a curriculum developed for physicians who work with minority populations and who themselves are often minorities, so African American, or Hispanic … and with an attempt again to begin to understand the culture.

Because the culture is not simply in the patients, but it’s also in the physicians. And so this has now been relatively well identified that the barriers to advancing and improving end of life care are not simply physician based … but they are also patient based, and family based and very culturally based.

But we haven’t well studied it in the Hispanic population as an example. In the American Indian population it’s been partially studied … and again distrust of the health care system, a lack of access to good hospice care. Cultural taboos about talking about death and place of death. So there, there clearly are examples were cultural issues are critically important and, in fact, the National Cancer Institute in one of its grants to support palliative care is studying this in the American Indian population.

HEFFNER: What do you find is the role of religion? Whatever the religion.

FOLEY: You know, it’s mixed. There’s no question that religious beliefs play a major role in people’s … in, in patient’s talking about their dying and in accepting their death.

HEFFNER: Which way does it play that role?

FOLEY: For those that are highly religious and believe in a continuation of their life, or view that their life is simply a gift from God and that there’s a greater life after they die … then dying is very comfortable for them.

For those who don’t necessarily share that belief, then dying is much more challenging for that population. But it’s, it’s more complicated than even religious based. There are some that, that believe that … there’s been a series of papers that have looked at religion and end of life care from the perspective that those who are more religious are more likely to have advance directives; more likely to accept hospice care; more likely to give up on aggressive treatments. I mean this is just a description of those types of patients.

But greater attention has been, I think, focused on the issue of spirituality, which is not necessarily religion based; but a much broader concept of a person’s existential issues and concerns. And coming to peace with themselves, with their family members, perhaps with their god.

But in a variety of surveys, looking at what is important for individual patients, clearly their coming to terms with their family members or with their god or with their greater being is a very important issue for them. Upwards of 70 to 80 percent of the American public.

HEFFNER: Do what? 70 or 80 percent …

FOLEY: Have a very strong sense of spirituality and their need to be a peace with their spiritual lives and in their spiritual lives. And you’ll ask me “what is their spiritual life?” and it’s … it’s complicated because it’s not their religious life, it’s their personhood; it’s who they are, it’s their expression within themselves and of themselves of their spiritual life.

HEFFNER: I would think that in attitudes toward death and dying one would find the essence …

FOLEY: MmmHmm.

HEFFNER: … of what we are, who we are, who we think we are …

FOLEY: MmmHmm.

HEFFNER: … is that true in your experience?

FOLEY: That’s what people … really framed very much in the spirituality discussion has been that kind of a concept. And, in fact, there have been a series of researchers who have tried to address the needs of seriously ill patients who are feeling hopeless or helpless, and feel that their lives are not worth living. And have tried to address that with what is called “dignity conserving therapy”.

HEFFNER: What do you mean by that?

FOLEY: This is a term that’s been coined by Dr. Harvey Chochinov who’s a Canadian psychiatrist, who, again, was supported by our project on Death In America. And it is an opportunity in which when patients are in that position, in our … as I said, defined and described themselves as hopeless, as helpless, of feeling quite lost, of not want to go on … and, and I don’t want to call them “depressed”, because I think there’s a … there’s now a much greater sophistication of whether it’s demoralization versus real depression.

But, in that psychological state this therapy is basically providing them with a life review and asking them to talk about what they did in their lives, talked about the legacy that they’ve left, talked about the good things and the bad things and provide that therapy which is called “dignity conserving” because it gives the patient the opportunity to reflect on their lives. To articulate their reflections. This is taken verbatim from the patient.

It’s then edited and given back to them the next day, or the day after that to read. And then the patient can make a decision of what they wish to be done with it. To give it to their family or to rip up and throw away. Or … and it’s been extraordinarily insightful for the patient and incredibly therapeutic.

HEFFNER: Where does this happen mostly? In certain hospitals? In certain geographical areas? Where?

FOLEY: Well, it’s been led by a psycho-oncologist in Canada …

HEFFNER: In Canada.

FOLEY: But it’s now a multi-center grant that’s supported by the National Cancer Institute … happening in Canada, in the US and in Australia. And it’s moving this sort of therapeutic approach forward to begin to address how do we address the psychological needs of seriously ill patients who are reporting this sense of hopelessness or helplessness or loss of autonomy and concern about what’s happening to them.

And often in a setting where it’s not thought that an anti-depressant would be appropriate or would even have enough time to work. These are pretty sick patients. And yet what has been reported is really quite a dramatic impact on the patient. Such an impact that one can look at, you know, the variety of scores that are being measured in these patients of their change in attitudes and in their relationship with who’s caring for them and their then … secondarily, their relationship with their families.

So it’s in a way quite simple. And yet, it has been, I think, the focus of a very real approach that doctors could use with patients who are facing the end of their lives and giving patients this opportunity to really reflect on their essence, their personhood, their view of life, their view of death. And, providing … this openness.

HEFFNER: Pain. Palliative care. Your specialty. Where does that fit?

FOLEY: It’s very hard for patients to be able to do anything if they’re in terrible pain. They can’t think, they can’t interact with their families. So, treating pain is a critical issue. And I think one of the things we learned in our Project on Death in America was that … that the fear of pain by patients and by their families was enormous.

The fact that they might experience uncontrolled or intractable pain is a fear of, again in surveys, of 75, 80% of the American public. So it’s, it’s enormously feared … can be well controlled; isn’t always well managed.

And more recently, there’s been this incredible backlash to all that we’ve attempted to establish in treating pain in patients with cancer. And the backlash comes from the fact that the drugs that we’ve successfully been able to treat patients with are opioid drugs, are narcotics, are drugs of abuse and with the increase of these … the use of these drugs by cancer patients as well as non cancer patients with chronic pain, there’s been an increased diversion of those drugs into the illicit market.

And since there’s an inability, or been an inability to control the illicit market, there’s been a much greater attempt to be rigid and increasingly more rigid with licit prescriptions. And so one particular drug, oxicontin has been, you know, played out in the newspapers as an epidemic, a drug of epidemic proportions causing and associated with abuse, and yet it’s a very effective pain reliever for cancer patients with pain. Yet my own patients taking this drug, when they go into the pharmacy, the pharmacists says, “Do you really need to take this?” or they say, “We don’t stock this.”

So we’re sort of seeing this backlash that has happened … that has always been there, but became, I think, much more prominent with the diversion of oxicontin to an illicit market. And it’s impacting on cancer patients with pain.

HEFFNER: When we first spoke one of your major concerns were … had to … was … had to do with doctors who were stand-offish in the use of pain killing drugs. Is that still the case?

FOLEY: Well, it’s …

HEFFNER: More or less.

FOLEY: … it had, it had dramatically improved. And clearly for the cancer patient is has, absolutely, improved. But this kind of reporting with then doctors accused of criminal charges because patients have taken the drug that they’ve prescribed and then gone out and sold it, and it’s made its way into this illicit market … has identified a variety of physicians who have then been held up on criminal charges and gone to jail.

And, you know, the simple mention of that … the simple publication of that in the newspapers is … has an enormously negative effect on physicians.

I want to keep emphasizing that the cancer patient, for the most part has been relatively protected because they have a clearly identified need. But we’re seeing so many cancer patients now who have been successfully treated for their cancer, but who have chronic pain as a result of their cancer. Or have other chronic pain syndromes. And so are being maintained on these drugs for longer periods of time. And so we are seeing a backlash and a resistance on physicians’ parts to prescribe drugs to this patient population because they’re concerned that the drug enforcement agency or the narcotic officers are going to begin to look at the prescriptions they’re writing and begin to ask questions about it.

HEFFNER: My sense of the matter which shows you how naive I am was that that was true essentially where there was abuse of the prescription writing …

FOLEY: MmmHmmm.

HEFFNER: … capacity. But you’re saying that that’s not the only … you’re saying patients have sold …

FOLEY: Oh, yes. Yes. It was believed that this was just happening with individual bad doctors …

HEFFNER: Right.

FOLEY: … who, you know, set up “pill mills” and were doing this. No, in fact, there have been cancer patients … elderly cancer patients who have sold their drugs. I mean, there’s a few, but one is sufficient to sort of them begin to say, “Well, we can’t even trust the cancer patient.”

And so … and one of the difficulties with all of this is that the newspaper reports on this are filled with anecdotes … no one seems to have the full facts and getting at the facts is, is problematic. So … this is not to be … to have sweeping concerns about what’s happening to the cancer patient, but it’s made very physician much more conservative, because they see that they potentially under the watch of a narcotic officer, a drug enforcement agency, who’s looking at what prescriptions they’re writing and what’s happening.

HEFFNER: Ten years ago you were optimistic about the medical culture …

FOLEY: MmmHmmm. Well, I … I’m always going to stay optimistic about the medical culture, but I think they feel more challenged now. And this is something they don’t want to be challenged by. So, in fact, they are not gong to write prescriptions, so there are some physicians who … not those who care for cancer patients … but are in the general public … caring for patients in the general public, who just decide not to have a drug … a DEA license, and therefore they don’t write a narcotic. And therefore they feel very proud that they don’t writing narcotics. So, this is quite a reality.

HEFFNER: Isn’t there an oath that I once used to hear …

FOLEY: There is an oath, but there isn’t an oath that you have to provide pain medications to patients that you’re not sure you wish to provide it to. And when physicians … and I think, though I don’t want to take the tact of accusing physicians here, I think it’s much more complicated than physicians.

It’s complicated by the fact that, both for the cancer patient living every day with chronic pain and for the non-cancer patient living every day with pain … we don’t have good therapies. We need better therapies. We need to do more research, better research, more sophisticated research to improve that.

So that’s the problem. The solution is we have some drugs and some of those drugs can be abused. But we don’t have really any evidence that the legitimate pain patients, followed by physicians around the country, are the ones that are causing abuse.

There are … you know, and there may be a few of them. But they’re not the problem, there’s just a select few. But the select few have been quite played up in the newspapers.

HEFFNER: So what do you do?

FOLEY: I think we have to continue to teach physicians now to evaluate patients with pain; how to access patients with pain; how to manage pain. And at the same time I think we have to try to, you know, call for a balanced policy so that the, the attempt to decrease abuse in this country, which I think is a very legitimate approach shouldn’t be impeding the care that we try to provide to patients. So it’s trying to create this balance.

HEFFNER: We just have a few minutes left … but though I’m going to ask you to stay where you are so we can do a second program … is it cancer that is, for the most part, the pain giver?

FOLEY: Yes. So the … from every study that we’ve done, about 70 to 80 percent of pain that occurs in the cancer patient is coming from their tumor. And about 20 percent comes from either their treatment, or happens independent of their tumor or their treatment. So that if you look at the spectrum, the most common cause of pain in a cancer patient will come from tumor pressing on a nerve, pressing or expanding a … your liver, your lung, your GI tract, etc.

HEFFNER: But is the most common source of pain a cancer related involved …

FOLEY: Yes. Yes.

HEFFNER: … disease process.

FOLEY: Yes. Yes.

HEFFNER: And others are just spread across the board.

FOLEY: They are spread across. But, for example, there are a variety of surgical procedures that patients undergo with cancer, that can interrupt nerves and then leave patients with nerve injury pain. So one of the common types is patients who’ve had a … incision made in their chest wall, what’s called a thoracotomy, they can develop post surgical pain syndromes. Women who’ve had a lumpectomy can develop post mastectomy pain. Patients who’ve had dissections of their groin, for example, can have pain at that site, so there are common sites that appear to be more likely to be associated with nerve injury pain.

HEFFNER: Does that mean that cancer …

FOLEY: And that’s not the cancer … that’s the treatment.

HEFFNER: Does it mean that the cancer and its treatment have been the major source of your knowledge about pain control, about palliative work?

FOLEY: In my own experience because I’ve been at a cancer center and that has been the focus. And, and, in fact, the cancer patient has been, in a way, the natural experiment that we’ve had this opportunity to evaluate these patients with pain, understand the nature of their pain, see how chemotherapy, radio therapy can be traumatic in improving pain for patient. And also see how drugs can be used during the patient’s cancer treatment and also then see how patients stop taking their medications and their pain medications when their tumor is treated appropriately; when their chemotherapy is effective. So it’s given this opportunity to see patients in terrible pain, good treatment for their cancer and have relief of pain.

HEFFNER: Thank you so much for joining me today. Please do stay where you are so we can talk more about this wonderful, awful subject.

FOLEY: Thanks.

HEFFNER: Thank you, Dr. Foley. 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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