Before I go into the subject of today’s talk, let me first say a few words about Commonweal, what it is and what we’ve learned. Commonweal is a twenty year old health and environmental research institute in Bolinas, California, just north of San Francisco. It has three major program interests: at-risk children, cancer and life threatening illness, and global environmental issues. Today I'll be speaking exclusively about our work with cancer.
We have three separate cancer related programs, the Cancer Help Program, the Cancer Project, and the Institute for Health and Illness. The Cancer Help Program is a week-long support program for people with cancer who are under the care of an oncologist or other qualified physician. We have run 75 of these one-week programs over the last ten years. People come from all over the United States and sometimes Europe to spend a week orienting themselves about ways to integrate the best of standard medicine with the best complementary therapies. The second program, The Cancer Project, is devoted to ongoing research into the specific modalities of treatment in both standard and complementary therapies. The third program, the Institute for the Study of Health and Illness, provides physicians as well as other health practitioners with opportunities to examine deeply ways to better help their patients and, more importantly, to help prevent psychic burn-out themselves. There is a huge amount of burn-out among health professionals who work with life-threatening illness, putting the healers in at least as much psychic risk as the people they treat. We are addressing the greater question of how health professionals can come into a better relationship with their work, with their life, and how they can rekindle the flame of their original intention.
The Cancer Help Program takes only eight people at a time. They come to Commonweal, which is located on a very beautiful piece of land just north of San Francisco in the Point Reyes National Seashore. Those eight people spend a week in the following routine: they get up in the morning, take a yoga class, eat breakfast, and attend a morning support session. After lunch they have a massage, or an art-therapy session, or individual counseling with a co-leader or myself. Then they take an afternoon yoga class followed by dinner. In the evening I give the talk that I'll be giving to you today about choices in healing. The talk is normally four hours spread over two evenings, so you will hear the compressed version
Having done this program seventy five times over the last ten years, I can tell you that spending this week at Commonweal is frequently an absolutely transformative experience in the lives of the people who come. They remember it for the rest of their lives and report that it was one of the most important things that happened to them after their diagnosis. We have learned that this program helps people with cancer. Whether or not people can change the course of their disease, they can shift the experience of the illness. Since the illness experience is what people actually live through, the capacity to shift that experience is not a trivial thing, though contemporary medicine spends very, very little time on it. Our principal work is with the human experience of illness as opposed to the disease process itself. Whether changing the experience of illness affects the disease process or not is a fascinating empirical question. There is increasing evidence that it may affect the disease process, but we make no claims about that.
Five Competencies
In order to shift the human experience of the illness, in cancer or any other life threatening illness, I believe there are five competencies that all humans could use, regardless of whether you are a physician, nurse, psychotherapist, person with cancer, or someone facing some other life threatening illness. These five competencies involve understanding choices in five areas: choices in healing, choices in mainstream therapies, choices in complementary therapies, choices in pain control, and choices in dying. I submit that those of us facing the second half of life will better equipped to face its challenges if we are aware that there are profoundly important choices in all these areas.
Choices in Healing
I regard the first area, choices in healing, as the master competency because these choices have the widest ranging effects, encompassing the physical, mental, emotional, and spiritual levels. There is a distinction in mainstream medicine and the medical literature between biomedicine and biopsychosocial medicine. Biomedicine focuses principally on the disease or the biomedical process. Biopsychosocial medicine is interested not only in the disease, but also in the illness which is the human experience of the disease. Biomedicine focuses on cure or palliation. Biopsychosocial medicine focuses not only on cure or palliation, but also on healing, which is the human experience of becoming whole again. Biomedicine focuses on the alleviation of pain, biopsychosocial medicine focuses not only on the alleviation of pain but also on the alleviation of suffering which is the human experience of pain. I regard both biomedicine and biopsychosocial medicine as equally valid perspectives on what mainstream medicine has to offer. It is useful for us to recognize these dual branches of medicine as complementing each other rather than competing.
What are the tools that one brings to healing? There are many. At the physical level there are the familiar tools of diet, exercise, stress reduction. At the psychological level there are support groups, psychotherapy and so on. But I like to think of healing in a deeper sense, the way Victor Frankl spoke of healing. Victor Frankl was a great psychoanalyst who found himself in Auschwitz, the Nazi concentration camp. As a physician and psychoanalyst he tried to care for the other prisoners while barely managing to survive himself. While he was there he tried to figure out why some people were able to survive the concentration camp experience. His conclusion was that the survivors were the people who had a deep sense of meaning to which they could return.
I don't know how many of you, like me, have been through periods when you were tried very, very deeply by either physical illness, psychological suffering, or something else. But most of us have been at some point. At the times when you wondered whether you would make it through the night, either psychologically or just physically, what was it that you went back to? What helped you get through the night? I suspect that in those ultimate situations most of us turn to whatever has the deepest meaning for us, whatever it is that we can find that we can hold onto in the most difficult times. This is what Victor Frankl describes in his great book, Man’s Search for Meaning, and it is the central insight of all the great religions and spiritual traditions. At the times when we can no longer walk ourselves, is there something or someone walking beside us? During those times, what can we cling to? What can we can adhere to? For some people, the answer is religion, whose meaning is to bind back or reconnect.
I suggest that in the face of suffering, whether your own or someone else’s, that the great injunction, "above all do no harm," can be understood to mean "above all do no harm to that person's capacity to find some source of light or hope or meaning within themselves.”
The most ancient tradition of healing, the great shamanic tradition, was in its essence the same all over the world, teaching that before you tried to save the body you tried to save the soul. To the shamanic traditions soul loss was the greatest fear. Unfortunately, in today’s hospitals, many people diagnosed with life threatening illnesses are at serious risk of soul loss. Very often while providing magnificent technological support, we forget that we have the capacity to injure the soul at a time that it is very, very, very, vulnerable. That is a major misunderstanding of the true goal of medicine.
The diagnosis of a life threatening illness can become a teaching moment for the patients and their families. It is a time of opening up, a time when in addition to the loss, there is the possibility for a deepening, a healing of old wounds, and potential for renewal. It is an opportunity for them to step into the larger lives that are beyond most of us in the busyness of our daily lives. That is practicing medicine the way it truly should be practiced.
Very often in complementary or alternative medicine we get caught up in the issues of whether acupuncture, or shark cartilage, or the Gerson diet, or macrobiotics, or qigong, or yoga, or imagery, or psychotherapy, or visualization works as a technique or not. And do we have evidence in controlled clinical trials of whether these things work? I don't belittle those questions, they are significant, but they pale in relationship to the doctrine that has been at the heart of the great medical and spiritual traditions from the beginning of time: that is, “to cure occasionally, to alleviate sometimes, to comfort always.” Comfort means helping people avoid the most debilitating disease, soul loss.
Choices in Mainstream Therapies
Choices in mainstream therapies is a tremendously important issue but I won’t discuss them at length here. The key point is that most patients enter mainstream medicine with the view that it is a monolith. They believe all the scientific information is funneled into the head of the first physician with whom they consult. The physician acts like a computer, sorting information and locating the optimized treatment solution. So the patients accept the solution without question because they don't realize that there are choices. Not only is this profoundly disempowering for the patient, it is also not true. Doctors know that mainstream medicine is profoundly pluralistic. Doctors know that if a cancer patient goes to a surgeon, an oncologist who does chemotherapy, and a radiation oncologist for their perspectives the patient will encounter three different cultures of medicine, each with different ideas about the best treatment.
People need to understand this pluralism. Understanding the different cultures of medicine is crucial to their survival because each brings valuable and important insights. This is true not only within cultures of medicine in the United States, but also internationally. Lynn Payer wrote a wonderful book called Cultures of Medicine in which she looked at cultures of medicine in the United States, Great Britain, France and Germany. I myself have also spent some time exploring cultures of medicine in Japan, so altogether we can discuss the five of the major industrial countries.
What stands out about the way medicine is practiced in the United States? It turns out that American medicine is uniquely aggressive among the cultures of medicine in the industrialized world. Devra Lee Davis points out that physicians in the U.S. use roughly twice the amount of chemotherapy in cancer treatment as physicians do in Great Britain. We use far more surgery, radiation, and chemotherapy than any other advanced industrial country in the world. We are inclined by our culture and our history to be an aggressive people. We have aggressive sports, an aggressive culture, and it shouldn't be bizarre to us that we have an aggressive form of medicine. In fact, Americans were involved with radical surgeries from early, early on in American culture. The founders of the Constitution and the early physicians despised the effete medicine of Europe. They felt that the pioneer people had the strength for radical surgeries.
We even read the same studies differently. A study in the United States that shows a six month increase in survival with a new and more difficult chemotherapy would be read differently in Britain. In the U.K. they would likely ask themselves what such aggressive therapy would do to this human being over the next few years in order to give him an extra six months of life, and is it worth it? Hopefully, when cancer patients begin to understand the differences between the different cultures of medicine they will begin to see their choices in a new light.
Choices in Complementary and Alternative Medicine
My specialty is choices in alternative and complementary medicine. I have spent a good deal of time over the past fifteen years traveling around the world studying unconventional cancer therapies, I have published a book with MIT Press on Choices in Healing on the subject, and I was the principle consultant to the Office of Technology Assessment for their Study on Unconventional Cancer Therapies. What are my findings?
First and most importantly, I have seen no cure for cancer among the unconventional cancer therapies. Many people claim that the medical establishment is actively suppressing alternative cures for cancer. I deeply disagree. I have seen no unconventional cancer treatment that reliably cures any form of cancer. Second, I've found very little scientific evidence on which to evaluate the question of whether integrating the best standard biomedicine with the best complementary cancer therapies can improve quality of life, prevent recurrence, or extend life. Third, while there is little scientific evidence backing alternative and complementary therapies, there is considerable anecdotal evidence. Millions of Americans use unconventional practices. Harvard Medical School’s Dr. David Eisenberg calls alternative medicine the hidden mainstream of medicine. There is reason to believe that scientific studies might someday support these anecdotes or human experiences.
Fourth, the trench war continues between the believers in unconventional cancer therapies and the believers in biomedicine alone. They see each other as the enemy seeking to exploit the patient. The proponents of alternative therapies talk about cut, burn, and poison as the modalities of mainstream medicine. Mainstream medical practitioners talk about unconventional treatments in terms of quackery and horrendous practices performed on credulous, incompetent patients. In fact, it is the more educated, more informed, higher income patients who are most likely to seek out unconventional cancer treatments. They are also most likely to have good health insurance. This has been forcing change upon the world of managed care in the last few years, as managed care hospitals recognize that the most desirable patients want to integrate the best of conventional and complementary medicine.
So how does one begin to sort through the huge array of complementary therapies? There are spiritual approaches like prayer and therapeutic touch; psychological approaches like support groups, imagery, and individual psychotherapy; nutritional approaches from the simple healthy diet to the vegetarian diet to the more extreme diets like the Gerson diet and macrobiotics; and there are physical approaches like yoga, exercise, massage and qigong. Then there are traditional medicines like Chinese medicine, Ayurvedic medicine, and homeopathy. The World Health Organization still regards the traditional medicines as valid systems of health care for much of the world, so we shouldn't dismiss them too quickly. They have very, very extensive histories of empirical research which in more and more of our scientific research finds are sometimes supported. Then beyond that there are herbal therapies, unconventional pharmacological therapies like shark's cartilage or iscador or laetrile. There are electromagnetic therapies like that of Nordenstrom in Sweden who uses some very interesting electromagnetic therapies to get at tumors that cannot be reached surgically. There are places that make unconventional use of conventional therapies like the Janker Clinic in Germany. And finally there is a strong emphasis, whether acted on or not, on practicing humane medicine and complementary therapy.
How can one begin to distinguish between these myriad treatments when there is not much scientific evidence? I thought about that for a long time and the more I looked at it the more those first four categories- spiritual, psychological, nutritional, and physical approaches-stood out for me. If a person with or without cancer takes that teachable moment in their lives to begin to get in touch with themselves more deeply spiritually, they may begin to ask themselves what they need to do psychologically to become wholer people. They may begin to eat a healthier diet, they may begin to get some exercise and do some relaxation. If the cancer is not fast-moving, what happens to them? What happens to them is what would happen to any of us if we did the same thing: they tend to get healthier. Doesn't that make sense? Leaving aside the cancer, they tend to get healthier. In medicine when somebody gets healthier we say two things, they have better quality of life and better functional status. Here's the really interesting thing: what is functional status a predictor of in many clinical trials in cancer? It is a predictor of better outcomes, in fact in many cancers it is a predictor of survival.
Sometimes a cancer patient comes to a physician and says, "I've heard about a diet,” or “I've heard about psychotherapy. Does any of that stuff make any sense to you?". If instead of the physician saying, "Oh that's a bunch of baloney,” or, "Oh, if you want to,” suppose the physician said, "You know that's a really fascinating question you're asking. These are developing areas and the literature in this area is new. But I'll tell you this, we know for a fact that people who undertake methods to improve their health in ways that make sense to them often experience what we call better functional status or quality of life. Sometimes, those people have better outcomes in terms of survival as well."
If patients undertake things that improve their quality of life physically, mentally, emotionally, and spiritually; if they undertake to become a healthier person in ways that make sense, then the physician should be enormously supportive. I would hope your physician would be very interested in what you're doing and in your experience.
Not too many hundred years ago a great physician named Semmelweiss went insane because he believed that physical hygiene was crucial to the survival of his patients but wasn’t believed. I wonder if in another fifty or one hundred years whether we will regard it as equally bizarre that mental hygiene was not a part of the care of people with life-threatening illnesses. I wonder whether we will regard it as bizarre that we did not understand that routinely.
While the first four categories, spiritual, psychological, nutritional, and physical approaches, are intrinsically health promoting, the other categories are not. Most often you find the real quackery in areas such as the pharmacological approaches. One finds these really excessive claims most often in the pharmacological therapies. We ought to be doing controlled clinical trials on the pharmacological therapies that cancer patients use most often, not because we regard them as promising but because we need to knock them out of the box so people aren't exploited by unethical marketing.
Currently, the most promising area of complementary medicine for cancer is psychological interventions. David Spiegel at Stanford did a study on metastatic breast cancer where he had a support group and taught people hypnotherapy purely to enhance quality of life and to control pain. Spiegel was rigorously against any claims for life extension. He thought he was doing it purely for quality of life. Ten years after he did the study, which did enhance quality of life, he decided to take a look at the data to see what happened to survival. To his astonishment he found that his very modest psychosocial intervention has produced a doubling of survival. He was so shocked, he sent his data to colleagues all over the country, and said, "Am I missing something here? Please correct this, what have I missed?" But they couldn't find anything wrong with the study either. Since then an increasing number of studies have come out showing not only a possibility but perhaps a probability that with some cancers the psychosocial interventions extend life.
Ask yourself this: if a new chemotherapy came on the market which roughly doubled survival with breast cancer in some clinical trials how much publicity would that have received? How strong would the effort be to bring that therapy to trial and get it into standards of practice all over the country? How frequently would oncologists recommend it to their patients? Now consider the psychosocial interventions, which costs very, very little, have only positive impacts on quality of life, no negative side effects, and are backed by the same amount of evidence. How quickly is that becoming a standard of practice? Is that fair? Is that reasonable? Is that science? I submit that those hospitals that begin to really understand this not only will be practicing better medicine but in the competitive world of managed care they are the places where the breast cancer patients the hospitals want to attract will be going. Mental hygiene ought to be treated with the same impeccable standards that are used to prepare for surgery. There is a huge difference in delivering these services the way they should truly be delivered and delivering them as a kind of afterthought, as in "Maybe it doesn't matter if we have forty people in the support group instead of twelve."
Looking ahead, I predict the next thing to cross over into mainstream credibility after psychosocial interventions will be extremely low fat diets for some cancers. Dr. Dean Ornish has done work with heart disease where he has reversed coronary blockage with vegetarian diet, yoga, and meditation. I would not be surprised if studies on certain cancers such as prostate cancer find that a 10% or less fat vegetarian diet in combination with stress reduction yoga group support extends life more than group support alone.
Choices in Pain Control and Choices in Dying
The last two areas I want to cover are choices in pain control and choices in dying. Most patients do not fear death itself as much as they fear being caught in suffering that they can not control over an extended period of time. When I talk to patients, the first point I make is that 90% of all cancer pain is fully controllable pharmacologically. They usually don't know that. The second point is that pain experts consider the lack of adequate pain management a national scandal. The front page of The New York Times recently brought this problem to the nation’s attention. My brother who is an oncologist says that in his oncology training he did not get advanced training in pain control. How can we have a community of oncologists in this country who are not trained to the absolute maximum in pain control? It is a staggering fault in the training. Cancer patients should be able to get first rate pain control from any oncologist they see. If your physician is not controlling your pain adequately there is a place in the community where you can get pain control and that is a hospice. You do not have to define yourself as dying to go to the hospice. Simply tell the hospice physician "I don't define myself as dying, I don't want your other services, I don't want to enter the hospice at this point, but I need a consultation on pain control because I'm not getting it." We shouldn't have to do it that way. From the deepest points of ethics and medicine, adequate pain control should be a human right in the medical care system.
There is much we can do to improve access to adequate pain control. Beyond insuring that adequate pharmacology is available to every cancer patient in the country there are some very useful non-pharmacological approaches to cancer pain that I want to talk about briefly. The first is acupuncture which relieves some pain, or acupressure which relieves some pain for some people though not at a high level of reliability. The second thing many cancer patients have found useful is TENS machines. These transcutaneous electrical neurostimulators look like little black boxes that you hang on your belt. The electrical leads deliver a very small amount of electricity into the body and this blocks pain receptors. Many cancer patients report a significantly reduced need for painkillers with TENS machines. If the patient can lower his need to be doped up, it can makes a huge difference in his or her quality of life. Furthermore, some pharmacological agents are immune suppressers, so from the point of view of wanting the patient to do well, delivering pain control via a TENS machine is preferable to using a morphine analogue.
The third and most important area is the psychological treatment of pain. In the Korean War they did studies of the experience of pain or the suffering among soldiers who had small wounds and were going to be patched up and sent back to the battlefield compared to soldiers who had large wounds who were going to be sent home. Who do you think was suffering more? The people with the small wounds. Why? Because they were being sent back in harm's way. The difference is the meaning of the pain. Earlier I mentioned Victor Frankl and the importance of meaning. When applied to the nature of pain it suggests that there is a physical pain signal and there is an amplifier that controls how the pain is perceived. This amplifier is meaning. Imagine you were a person with cancer who's been through difficult treatments and their traumas. You’ve been well for a little while and then you begin to experience pain again. Which of the two forms of pain does that more resemble? It resembles being sent back in harm's way. The amplifier has been turned way up. This suggests that we can adjust not only the original pain signal, but we can also adjust the amplifier. There is an alternative to using painkillers to dull the amplifier, and that is stress reduction through psychological intervention.
Psychological exploration of the meaning of the pain allows the grieving and the fear which are being somatized to be desomatized and expressed psychologically. In the Cancer Help Program, I’ve rarely seen anything as empowering as somebody who came in experiencing acute pain, was encouraged to recognize and express the grief and loss psychologically, and noticed a dramatic shift in physical pain. They are astonished, just astonished. It gives them a sense of control at a time when all forms of control are slipping away. This change is truly profound and should be part of the ethical and appropriate treatment of cancer.
One other delicate point is that in our culture pain is an absolute negative. It's something to be erased and blocked out. But if you look at the great spiritual traditions from around the world, without exception they all see a positive role for pain. Yoga teaches "the acceptance of pain as an aide to purification, the study of great scripture, and the complete surrender to the divine force in your life, these three things constitute yoga in practice." Ask yourself about the meaning of pain in the Christian and Jewish tradition. Who was Christ? He was “a man of troubles acquitted with grief.” Or reflect about the great spiritual folk-song, "If you could pack up your troubles and give them all to me-you would lose them, because I know how to use them." In certain circumstances, our own popular culture does see a positive role for pain, as in the "no pain no gain" attitude. I often ask cancer patients whether they learned more from the parts of their lives that were easy or the parts that were painful. It’s a delicate point, but opening it up begins to suggest to people that the only goal of pain control might not be simply blotting out all the pain. This is something the great Anthroposophical hospitals in Europe do. The goal of pharmacology in these hospitals is to bring pain down to manageable levels where the patient can work with it psychologically and spiritually. Acute pain is impossible to work with, it erases personality, it erases everything. But there are levels of pain that some people can work with and for patients who are inclined in that direction it can be useful.
Finally, I want to talk about dying. One of the most interesting things I’ve noticed about dying is that many people with cancer come to the Cancer Help Program saying their biggest fears are pain and dying. They do all their research on unconventional therapies, run around looking at all the different alternative therapies, yet they do very little to learn how to die. We have made death a very toxic subject in our culture and that is not universal. When you detoxify death by talking about it and allowing people to bring it out into the open, as we do in the Cancer Help Programs, it brings patients a huge sense of relief. We usually start with a question of what people's beliefs are. How many people in the room believe that death is the end? How many believe that there is life after death, or that something follows death? How many people believe that it's a mystery? That they're not sure, but it's a very interesting question and one with very real significance at this point in their lives. We talk about the benefits of grieving with their family members, grieving the loss before they die. We talk about what happens to families when deaths have been badly managed and there was no opportunity to grieve. How many people do we know who have been scarred for a lifetime because as children they lost a parent or somebody that they cared about and the grieving wasn't handled well? These psychic wounds are every bit as deep as physical wounds, and they are avoidable.
One of the most noxious new age beliefs that I run across is the “happy face theory” of psychological cancer treatment. Many of the Cancer Help Program patients come in with a belief that "I must think only positive thoughts or my cancer will get worse." This is a widespread New Age fallacy and a horrendous piece of propaganda. You find couples who have been together all their lives and one of the two people is dying and they have a huge amount to grieve together but they believe they can't talk about it because they have to be positive. What a difference it makes to them when I tell them we really don't believe that here. We believe that what makes a difference psychologically is being aware of what's going on inside you, expressing whatever it is. There is no such thing as a negative emotion here. When you express the grief and the sorrow, that makes room for other deeper forms of awareness to emerge that may include joy. Our experience in the Cancer Help Program is that it does include joy. We really open people up to the idea that what's psychological healthy is not the “happy face theory” but rather, is expressing whatever it is that's happening and truly grieving the losses. I believe that truly grieving losses, if it has any effect, may extend life. I've certainly seen many people, who have given themselves permission to grieve and plan for their deaths do better than those who are not allowed to grieve or plan. We give people permission to do that.
The other point about dying is that when somebody is dying, medically it is the best to strive for a soft landing. We use that term for people. It is a very different goal to be working for a soft landing instead of trying to eke out another week or month of life. For example, somebody's very sick with cancer. They may develop an intestinal blockage that would be a very difficult way to die, but first they develop pneumonia. Do you treat the pneumonia and allow them to die the hard way, or do you let them die more peacefully?
Now the great scandal, also splashed across the front page of The New York Times is that living wills are routinely ignored in hospitals across the United States. So not only do we do a bad job on pain control, we don't go along with patients wishes to die with dignity. This again is a true scandal.
The final point is about choosing between the home and the hospital as the place to die. Each has its own relative benefits, but if the choice is home death, it is imperative that the family find very skilled home health care practitioners. The hospice doctor and nurse are important, but the people who will be with you around the clock are the home health care practitioners. They are usually not licensed, and they are often not trained. Some of them shouldn't be allowed within a 100 feet of a person with cancer because they are sullen, resentful people taking low salary jobs simply for the money. Others are angels of deliverance. They are the midwives of the dying process. Your local hospice knows who these people are. You can go to the hospice nurse and ask "if your mother were dying, who would you want with her?" Get a list of eight of these people, interview them in advance so that at least three will be available. It makes all the difference in the world.
There is more that I can say about that but I think I will stop here. Those are the five areas we talk about at the Cancer Help Center, and the competencies that cancer patients can learn about. The fact that these choices exist can make a huge difference. Thank you all for your attention.
