COMPLEMENTARY AND ALTERNATIVE THERAPIES:
SEPARATING THE WHEAT FROM THE CHAFF| Conference Home Page | Presenter Bios | CMBM Home Page |
Presenters: Steve Dunn, David Hess, and Pali Delevitt
Moderator: Henry Dreher
Session: Sa5; June 12, 1999I. Abstract
"Separating the Wheat from the Chaff" addressed the complicated issue that all individuals with cancer confront: How does one select the best cancer treatments? Three researchers of this issue presented their approaches to designing optimal cancer treatment regimes. Steve Dunn, a cancer survivor and founder of "CancerGuide," an informational web site, recommends that patients create their own personal "decision filter." David Hess, a published medical anthropologist, introduced a similar concept, the decision "ladder." He listed a number of critical questions that cancer patients should ask when evaluating treatment options. Pali Delevitt, a cancer survivor, medical student educator, and care giver, emphasized the importance of listening and intuition in healing. All three of these speakers agreed that cancer patients must be proactive in the design of their treatment regime to ensure promising, individualized cancer care.
II. The Cancer-Related Issues Addressed
This session, "Separating the Wheat from the Chaff," addressed the complicated issue cancer patients face: How does one design the best possible treatment regime given the resources and options available? How do you make these decisions and to whom do you turn for help? Henry Dreher, a health and medical writer for complementary and alternative therapies, served as the moderator for the panel of three speakers who addressed these pertinent questions. The second two speakers replaced Ralph Moss.
III. The Program (Steve Dunn)
Steve Dunn is a cancer survivor who now runs a web page, cancerguide.com, dedicated to helping cancer patients understand and research cancer treatment options. He believes his own recovery from metastatic kidney cancer was due largely to the research he conducted on his cancer treatment possibilities.
A. Philosophical Background
Before Steve Dunn introduced his methodology for choosing appropriate cancer treatment, he shared his experience with cancer and the motivation behind his web site:
After being diagnosed with a large kidney tumor in 1989, I had surgery. As soon as I was ready to check out of the hospital, I was given two different conflicting follow-up treatment options by two different doctors. I didn’t have any idea of how I could make this decision, but I realized that I could read the medical journal articles. However, soon after the surgery I got the results of the postoperative CT scan. It revealed spots all over my lungs and a suspicious spot on my spine. While researching my original treatment options, I found an article with a survival curve for patients with metastatic kidney cancer whose metastases were discovered within 6 months of diagnosis. This curve was a catastrophe -- the survival rate after one year was only 12%, and after 5 years, it was exactly zero. I had to do something to get off of this curve. While researching I found out about interleukin-2, a new drug. I decided that I had to get this treatment so I researched the best possible trial. Miraculously, it worked. Now I am off of that terrible curve.
After I recovered, I realized that other patients need help since researching cancer treatments is such a difficult process. For this reason I started my web page. Since most patients do not hear about alternative therapies from their physicians, I have a particular interest in them. I think alternative medicine is an area where doing your own research can have a major pay-off.
After I started by web page, someone told me about a doctor named Prudent. I checked out his published articles and learned that he treated 31 patients with advanced cancer using bovine cartilage. The cases in this study looked credible. Next, I met with someone on the internet who knew a little more and learned that it works well for kidney cancer. I called up Dr. Prudent and got very involved with his study. My experiences have taught me that finding the information can help you separate the wheat from the chaff.
B. Details
Next, Steve Dunn described his approach to separating the wheat from the chaff. For alternative therapies, he begins this process by making two fundamental assumptions: 1) Some of these therapies may actually be very promising; 2) Most alternative therapies are only minimally or not effective at all against cancer. Steve noted, "I believe this because if alternative therapies were really successful, we would see a huge drop in the cancer death rate since a great number of patients are using them. Your job in selecting alternative therapies is to find the best ones in a sea of other options. This process of selecting is like a filter."
He believes people should create a "decision filter." This process consists first of assigning some level or ranking to each of the treatment options under consideration based on the degree that the treatment will be beneficial to you. In addition, you should select some type of a cut-off value. A wide cut-off means that you are willing to accept treatments with any promise so all alternative therapies will pass through the filter. If you are really skeptical and you don’t select any alternative therapies based on a small cut-off value, then you filter out therapies that may have been useful. Neither of these approaches will improve your odds of selecting a good alternative therapy. You need to choose some type of reasonable cut-off value that will include useful alternative therapies.
To make your filter efficient and choose a cutoff value that makes sense you should: 1) estimate the promise of the therapy; 2) come up with a cut-off value; and 3) modify how much promise you would be willing to accept when you consider quality of life with the treatment. You should also ask yourself, how well do I actually estimate the promise of a therapy and what effect does this have on the quality of my decision making? You may have a method of selecting therapies that actually gives you the worst set of options. On the other hand, you may have a very accurate estimate of how effective these therapies can be.
How to judge the promise of a treatment is where the controversy lies. Steve Dunn recommends that you first need to look at the evidence, preferably clinical evidence based on human patients with the same kind of cancer that you have. He says that cancer patients should be wary of pre-clinical trials on laboratory animals. In addition, you need to know that the people in the study had confirmed cancer to begin with. Steve Dunn has seen studies where people were cured but there was no proof that they even had cancer. You also need to know that they had active cancer in which change can be seen, verify that the cancer really did go away, and find out if there was prior treatment. Also, what other therapies were being used at the same time?
Another limitation in judging the efficacy of a treatment option based on the evidence available is what Steve Dunn called the "numerator/denominator problem." For example, some studies may list the number of successes with an alternative therapy but not how many people actually tried the treatment, the denominator.
The final factor Steve Dunn considers is the plausibility of the therapy. For example, homeopathy gives him trouble. He commented, "The substance is diluted so much that mathematically there isn’t a molecule of the substance left. What you have is a medicine which retains some type of essence or structure of the original thing that is supposed to provide the therapeutic result. The problem is that this would be a radical discovery in chemistry and physics and I would like to see the science support this. I would require more evidence before I believed it." You should also consider the side effects of a treatment to determine how plausible it is for your own life. Is permanent damage a possibility and is this particular treatment worth the risk? For the most part, alternative therapies do not have permanent or negative side effect. Usually there is some benefit such as stress reduction.
If you are going to use an alternative therapy instead of a standard therapy, you should always research the conventional therapies so you know what you are giving up. For example, if something is routinely used in standard treatments and is highly curable, then you would be making a huge mistake by only considering the alternative therapy. This is a situation in which you should have a high cut-off value. If you have an usually difficult cancer to cure then you should be more flexible with what you try. Make sure that conventional and complementary treatments do not interfere. Some treatment combinations can be synergistic such as vitamin C and interleukin 2, which causes a vitamin C deficiency. However, if a treatment is proven to be really helpful already on its own, then you should be more cautious about combining it with different therapies. Also, if something is really expensive or difficult to do, you may want more evidence that it works. These are the basic ways that to think about making decisions.
Steve Dunn gave example situations to illustrate how to approach the decision making process.
Situation 1: You have metastatic renal cell cancer, and you choose conventional immunotherapy which is extremely toxic short term with rare permanent damage and only a 5-10 % chance of remission. Since chances are not that good, yet this is the best conventional therapy available, you consider bovine cartilage. You find a small independent study done by someone other than the doctor who came up with the therapy and discover that three people did it with a 15% response rate. With a 6-24 month follow-up, none of the three had relapsed and no toxicity was reported. In some other places you found that more people had used this therapy for renal cell carcinoma and it worked. Would you try this treatment instead of the immunotherapy?
Situation 2: Now suppose that everything is the same as before but you choose to use bovine cartilage along with the immunotherapy. Would this make sense? If the immunotherapy had a 70% chance instead of a 10% chance, would you still use bovine cartilage?
Situation 3: Suppose you have already taken the interleukin 2, it worked and now you are in remission. You know your chance or remission is 50%. If you relapse, your chance of recovery becomes horrible. Let’s also say that your doctors don’t recommend further treatment because they do not know what else to do for you. In this case, would you use bovine cartilage in order to help prevent recurrence even if documentation does not say that it helps for recurrence? Here you are extrapolating beyond the data. Is this reasonable given the situation?
III. The Program (David Hess)
David Hess is a cultural medical anthropologist and professor of science and technology studies at Rensselaer Polytechnic University. He is the author of ten books on science and the public including theoretical books on the sociology and anthropology of science, technology, and medicine. Current research includes work for the books, Can Bacteria Cause Cancer?, and Women Confront Cancer.
A. Philosophical Background
David Hess spoke about his history with and interest in this field. Once he was faced with a possible cancer diagnosis. Fortunately, the test for liver cancer came out negative, but this experience inspired him to research topics related to cancer treatments. For his book, Women Confront Cancer, Making Medical History by Choosing Complementary and Alternative Therapies, he interviewed 20 women cancer patients, many of whom are leaders in organizations. They each let him know what the therapeutic choices they made were and shared their philosophies. His book Evaluating Alternative Cancer Therapies, involves interviews with about twenty researchers and clinicians, including patient advocacy leaders who know the field well.
B. Details
Given the low level of evidence available for cancer treatments, David Hess remarked, "I think it’s good to learn from the opinions of people who have been in the field for 20 years and to compare their areas of agreement and disagreement." He discovered that these leaders agreed on the need for individualized total programs focused on the cancer patients themselves and not necessarily on their type of tumor. This does not mean that you should disregard the type of tumor but rather view it as one factor to consider in the overall individualized treatment regime. The total individualized program should include conventional treatments, dietary modifications such as supplements and nontoxic drugs, herbs, exercise, relaxation therapies, and psychospiritual interventions such as leaving a stressful job situation or resolving a difficult family situation. The patient should be evaluated under all of these parameters and treatment modified as the patient progresses. Many critical questions should be considered such as what are the patient needs? Are there any financial restrictions? Is location important? Are there social or spiritual conflicts that need resolution? The patient should also be referred to support organizations which evaluate clinics, therapies, and policies. These support organizations in turn, should be questioned by the cancer patient. Do they have any financial connections with the clinics or therapies they recommend?
David Hess listed several more important questions that should be considered. Does the patient have a slow growing tumor and a relatively long time period for treatment decision to be made? Does he/she have access to a caring clinician who understands CAM therapies and is willing to work with the patient to develop an individualized program? Does he/she have access to electronic resources as well as medical libraries and the educational background to understand this material?
Next, David Hess discussed the evaluation of a clinic or a clinical organization. The patient should ask about the training, reputation, experience of other patients, claims regarding outcomes, and how easily the clinics will disclose such information. How many have published data? What is their take on CAM therapies? What kinds of facilities does this place have? Is there an operating room? Is there up-to-date medical equipment? What tests do they run? What is the method of payment? Is there a set fee with no hidden costs? Do you have the energy to travel out of the country to a foreign clinic?
To evaluate evidence, David Hess recommends the "ladder" method. The further up the ladder you are, the more picky you tend to be. What does the evidence look like? If the therapy appears to be safe but there is not good clinical evidence, then you may want to go down the ladder, meaning be more flexible in terms of the data available. However, if there are several side effects, you may want to go up the ladder, in other words, be more selective before choosing that particular treatment.
Before concluding his speech, David Hess critically discussed the three most common anti-cancer diets in the US: the Macrobiotic, Gerson, and Kelly. How do you choose between these diets when they each have certain strengths and weaknesses? For the most part, patients can do well on all of these diets, especially when switching from the standard American diet.
The macrobiotic diet, culturally East Asian, has cooked foods with little fish. The clinical evidence for this diet is quite weak, although sub-clinical evidence praises the benefits of soy and sea vegetables. However, there are some convincing retrospective studies available. Negatives are that it excludes vegetables such as asparagus, some of the grains may be allergens, there is a high carbohydrate component, and a low emphasis on the essential fatty acids. In addition, the yin/yang rational allows frying which damages fatty acids. There are some nutritional inadequacies for late stage patients. Since this diet still uses a folk classification system, it needs some modifications in light of contemporary research.
The Gerson diet, culturally German, limits sodium, fat, and protein, and increases potassium and oxidizing enzymes. It relies on a lot of raw foods and juices. This diet is rigorous and compliance is very difficult. However, it gives good sub-clinical results and decent clinical evidence.
The Kelly diet involves metabolic typing. This is derived from the Gerson diet with a stronger emphasis on proteolytic enzymes –this is the key difference. The biological typing relies on questionable ideas of human genetic covariance, which David Hess questions from the perspective of a physical anthropologist. In contrast, the Gerson diet draws on pre-biomedical humoral theories, which are clearly rooted in 20th Century medical science. In addition, Kelly provides little scientific evidence to support the theory of metabolic typing. Nevertheless, proteolytic enzymes are now in clinical trials so this may turn out to be something valuable.
III. The Program (Pali Delevitt)
Pali Delevitt is a pioneer in bringing holistic healing into medical education. As an instructor of medical education at the University of Virginia, she created "Healing Options," one of the first courses in integrative healing for medical students. She is a two-time cancer survivor who combines conventional therapies with complementary medicine. She now serves as a counselor and consultant for those suffering with life-threatening illnesses and is an international speaker on the integration of holistic medicine with conventional practice. Her book Listening Medicine will be available this year.
Pali Delevitt believes that the efficacy of treatment depends on the collaboration of the provider with the patient. In her own doctoral research, she videotapes both patients and their physicians to observe how they heal together and how the view of the physician influences the treatment process. Pali noted, "I’ve been on both sides of the coin. Unless there is this convergence of understanding between the patient and provider, no matter how much data or studies or outlines exist, there is a rocky road on the way to recovery or the way to healing."
The following are Pali’s thoughts about healing and how she approaches health care :
As a health care provider, I like to keep things simple. This is a real challenge as a provider, but it is important not to over do it. A cancer patient is initially overwhelmed by his/her life, by the illness, by the symptoms, and by the emotional and physical situation he/she is facing. We give people information only in the bites that they can chew, swallow, and digest. The journey is essentially the patients’ and we are all here just to support and be there for them in whatever way that we can. If I try to flood my patients with too much data and information, it doesn’t work well. What I do is I listen to their stories. Especially with videotaping, we can both watch the videotape. At this moment, an incredible intuitive sense comes out of what is right for the patient.
I try really hard regardless of what my personal beliefs are or what the studies show to say to the patient, "What can we do to help you with where you are right now in terms of your belief system, what you are willing to do, and what can take you to the next step? For example, if someone is taking chemotherapy, I give him or her a menu of things that can help mitigate the effects but I do not give the entire smorgasborg. Then I listen to their major concerns and their intentions. The more I listen, the more I sense what therapies might be a match for the person. Sometimes this comes from the person. For example, some say, "My body needs to be touched," and I will recommend massage therapy.
I am finding that the adjunctive therapies make the patient more open and responsive the healing process. Healing happens in a much deeper place than we are even able to scientifically validate. Science is just beginning to catch up with things like energy healing.
I also believe in the intuitive knowing of ourselves and of our patients. This can help when evaluating whether or not a treatment is good for you. Once I discovered what to do through a meditation. I had a vision, which told me to stop chemotherapy for seven days. My doctors were not happy when I made this choice but I knew that it was the absolute right choice for me and I recovered. I have had a lot of personal experiences with dreams and intuition, and I have listened to other patients who have had similar experiences. At some inner level we know what is right for us, even if our gut feeling and intuition contradict everything that the mind is saying.
When I recovered from my first cancer in 1987, I began tape recording stories and doing drawings with patients. One woman said that she felt fine about her chemotherapy, but when she did drawings, she drew a picture in black of herself leaning away from a needle. This picture revealed what was not readily apparent on the surface.
Dr. Richard Hayes, both a doctor and cancer patient did what was right for him after his diagnosis--he read the research, he eat a vegan diet, and practiced mind-body medicine. He then went a lot deeper. He discovered that healing is about self-acceptance. "My critic has been alive and well all of my life. I have listened to my critic and such feelings of self loathing and unworthiness," he said. "If I can come to a place of self-acceptance, I will begin to heal." I thought this was a very profound awakening. I wish you could have seen the luminosity in his face when he began to speak like this. This, the body language and the energy, which rises and falls, is what I look for in my patients.
We must get real with ourselves and real with our lives. All of the therapies, whether CAM or conventional, are external forces only. The change in the healing comes from within. We have to start there with ourselves and with our patients. This is what the healing journey is about.
Following this very poignant reflection on what healing means, Pali Delevitt invited us to join her in a meditation exercise. She said, "We can suspend logic for moments and allow ourselves to go to some place that is more real than our minds will let us know with intellectual evaluation. There have been times in life when you know without knowing how you know and when you understand beyond the reasoning that your mind can give. I want to encourage each of us to go to this place every day -- a place where we allow information and understanding about ourselves and our lives to come. The following is a meditation exercise I use."
Close your eyes, set aside the thought forms, and just be in the moment with the breath. Breathe into your heart and in that place in your heart, find that place of love that is love for all that is. It is there, you just need to breathe into it. In that place, draw someone who is in need of healing. As she stands before you, you look into her eyes and ask the question, "What do you need to heal?" Listen for the answer. The answers that come right away are usually the right ones. Looking into her eyes again, just open your heart and say, "How can I help?" and she will tell you. Again, just allow yourself to receive. Sometimes you will get the picture in an image. Sometimes you will get the answer in words, but she will tell you how you can help. Thank her, and again being receptive before you part, she reaches out and gives you a gift. She has something for you, and you may not understand what it is but you receive it with gratitude and love and you bless her. Bringing this gift back with you, again continue to breathe in your heart and release her with blessing for her journey of healing, acknowledging that you will be there for her in any way that you can, willing to listen. Come back into the breath and into the space.
"You can do this exercise with any person with whom you work and you may be surprised by what answers you get. Last year my brother in law came into my presence when I was doing this meditation. He was battling lymphoma. When I asked him, ‘What do you need to heal,’ he said, ‘I need to die.’ Sometimes the answers are not what we would like to hear but they are the truth. We must be open to receiving those answers. I asked him, "How can I help," and he said "Be there for Joanie, my sister." Our roles are to be there, be open, listen, and to give what we can. For now I want to thank you for being present and for being open."
VI. Questions
While doing all of this research, how do you cope with the horrifying statistics without becoming discouraged?
Dreher – It is important to seek out survivors in any way shape and form. There are survivors.
Dunn – I strongly believe in finding survivors. The Bernie Siegel books with cancer patients who beat the odds changed my understanding of what is possible. Discovering the odds for me was a devastating experience. When I had the surgery, I didn’t want to know the statistics. I just wanted to know that I had a shot. When I found out that I was at the edge of a cliff, that actually became motivating to me. I needed to do something to make a difference. It’s important to use the literature, but also find support groups because patient contact can be very helpful. See "cancerguide.com". It contains an article called "The Median Isn’t the Message" by Steven J. Gould. This points out that the possibilities are much greater than just a simple average. It’s very important to take into account the range of possibilities. Also, realize that the data has its limitations.
How do you know which major cancer referral services to use?
Dreher - The American Cancer Society and National Cancer Institute do not have useful information on CAM therapies. You need to look elsewhere. SHARE has a group of good people to evaluate CAM therapies. Ralph Moss, Michael Lerner, David Hess, Patrick McGrady, Steve Dunn – they all have web sites with useful information. Every cancer clinic should provide a list or some type of referral service so patients know who they can call for help. You can contact "Cancer Care" at 1-800-813-HOPE which can help guide cancer patients with their decision making.
Dunn - Although it is nice to have a person to talk to personally, the internet is amazing. It can bring you in contact with a very wide range of people who can offer advice and support. There are mailing lists for just about every type of cancer. You should go to "www.acor.org" to find the appropriate mailing list.
Did you make diet and lifestyle changes during the course of your treatment and what impact did this have?
Dunn – Yes I did, I don’t know the impact, but I did in fact change to a low fat, mostly vegetarian diet. For five years I drank a quart of carrot juice a day. I always tried to keep in good shape whether that meant walking laps around the ICU or climbing mountains. I also had many important emotional changes. I fell in love and got married. All through it I tried to look at what I was doing as clearly as I could in order to decide if it would help. Also given the desperate nature of the situation, I tried more treatments than I normally would have given the lack of evidence available.