M. D. Anderson Cancer Center
Cancer Newsline Audio Podcast Series
Date: September 8, 2008
Duration: 0 / 15:50
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Welcome to Cancer Newsline a weekly podcast series from The University of Texas M. D. Anderson Cancer Center in Houston TX. The aim of Cancer Newsline is to help you stay current with the news on cancer research, and the rapidly changing advances in cancer diagnosis, treatment and prevention. We also hope to provide you with the latest information on reducing your family’s risk of being diagnosed with cancer. I am Dr. Leonard Zwelling professor of medicine and pharmacology here at M. D. Anderson.
Today where going to do a very unusual podcast. I have with Dr. Lois M. Ramondetta an associate professor of Gynecologic Oncology and a author of a terrific new book called The Light Within; the extraordinary friendship between doctor and patient brought together by cancer. It’s published by William Morro which is an imprint of Harper Collins. I also have with me Chaplain, Dick Maddox from the office of the Chaplaincy and we’re going to talk about the changing relationship between patients and doctors in the area of cancer care and the role of spirituality that plays in this treatment process. In Dr. Ramondetta’s book tells a story of her relationship with one of her patients who is a co-author Debra Rose Stills who was her patient and her friend. In the past cancer patients were not always told that diagnosis and prognosis. Then, when I was training over thirty years ago we became brutally candid and a bit dispassionate but there is clearly a third way a true relationship between the physician and the patient like Dr. Ramondetta’s with Dr. Stills I’ll like to start with that.
Dr. Ramondetta, welcome and thank you for coming. Tell us a little about the title. Why did you call the book, The Light Within.
First of all thanks for having me and there are a couple of reasons to be honest prior to Deb’s passing we wanted the book to be called, The Road To Istanbul, that was our last trip together and Harper Collins actually helped us come up with this title through a specific passage within the book. Deb and I used every single moment together as another reason; every time we got together we said we were writing the book and one particular occasion we were in Paris at a very small café we were laughing and writing the book as we always did and she really did have this wonderful way about her big laugh and big smile and some unique clothing and there was a women sitting at a table next to us who was obviously from France was kind of looking at us not truly understanding everything we were saying but she leaned over and in kind of broken English said,” there is a light coming from you”. She said that looking directly at Deb and it was true when she walked away. It’s true you really do have a light coming from you. So I think that’s probably one of the main reasons we called it that. The other reason is that everybody has the potential to get to that point as there going through there cancer journey, even any journey.
How has this friendship with Dr. Stills changed your doctoring? How have you changed your approach toward other patients and how you deliver medical care?
I would like to say I don’t think this changed the way I approach patients because I think the way that I approach patients is the reason that I met her in the first place. Although anybody who met her could not help but like her and get to know her better. However there where a few things I just talked with a group of people about this, that what happen while we were writing the book that helped me. One of which, writing the book was therapeutic to both of us and I don’t think I realized it when we were doing it. I think it was a form of narrative medicine for patient and for doctor. As a result of writing it down I got closer in touch with my feelings and as a result of reading her writings I understood hers better as well but there were a couple areas I learned how to approach patients differently.
I gave this example just recently for example I prescribe pre cutaneous urostomy tubes that help with the kidneys in many difference cancer types and I often don’t think twice placing those tubes because I kind of figured you either have a kidney that functions or you don’t. Although I know there are complications associated with it and it can be difficult to manage. Deb kind of help me and step back, when she was approached with the same decision I don’t have no interest in having that. I don’t want to be medical-ized I don’t want a tube coming out of my back. It’s helped me to look at that a little differently. So I try to step back and think of every decision that I might take lightly because I offered it so many time to patients. Within the context of that patient.
I don’t think I read a book faster then I read your book. I read it in the last 24 hours. It is a terrific book. One of the things that struck me is did it matter that both of you were women?
Well I don’t want to offend anybody but I actually think it did in this case in this particular circumstance. I’m not saying you can’t have a wonderful relationship with two men or a man and a woman as a patient or physician I do think in this particular circumstance, yes. Not only that we were women but we were two women that were dealing with our own personal turmoil at the time and as a result of the confidentiality of our relationship and kind of the need for each other we were able to gain strength from that relationship.
Let me read something that’s on page twelve in the book that was apart of Debra’s writing when she talks about being…”I divested myself of friends some of long standing who knew me, 'BC'. Which means before cancer, I have done this because in there eyes I will always be in a altered state. I will be always sick and “sick” can be terrifying. Sickness makes you think about the unthinkable. With the people I met since beginning this cancer drama however I am what they see before them.” Chaplain do you think this is something you have seen before people divest themselves of past relationships when contract cancer.
Oh yes, of many times Dr. Zwelling. I think people move into a different phase of there live when their living with cancer because first of all as adults have a lot of time on their hands and they begin to reflect on where they been with their life, where they are and what the future might hold. So those relationships that they have formed in the past and those that are near to them at the moment that there diagnosed with cancer and that days, weeks and months that their living with cancer began to be viewed in a different light and many cases they see aspects of personalities and relationships that they may have not evaluated closely enough in the past. So then they begin to cherish people they may have never really paid a lot of attention to in the past. Also people react differently those who are caregivers and friends. Many do drop by the wayside, simply aren’t able to cope with the travesty or tragedy of living with cancer. So they are not able to approach there friend or family and many do step forward innocently and completely and just present themselves. The way I like to place it as a metaphor is just to hold out their hand and take the hand of the person that’s living with cancer and journey with them. Not holding out that they have magic words or magic presence or anything but simply be with them. Which ultimately is what I think is important in life is that we have those who will love us and journey with us not necessarily taking away those which are holding us back or threatening us in life.
That comes though in your book dramatically. The whole question of the role of spirituality in the deliver of medical care at a time when everything seems to be so technical and more drugs coming out and more CAT scans and MRI’s. This seems to be a role that traditionally doctors have played. Did we lose it and are we picking it back up?
I can’t say because I wasn’t there before. But I actually see a lot of this now and there are a lot of reasons for this. I can add a couple of ideas one would be. There is more of a push for humanities in medical training. There are more people who pay attention to medical, the benefit of narrative medicine. I do think it’s happening in multiple of areas. There are many women in medicine. There are many people who had medical humanities training. A lot more interest in this in medical school also different kind of patients are more educated often know things about there cancer before they come. The internet has provided them with material which has offset the relationship to some extent when the physician was the holder of the knowledge and there is kind of paternalism to medicine to taking care of the patient. I think that medicine have become more of a partnership in many circumstances. Also in terms of money that the patient… the physician needs to be the patients advocate in many different circumstances where you really walking together through this process thought this cancer journey. As a result of that you can’t help but be closer and form these friendship bonds.
The one thing that was in the book that I though was a terrific quote and it came up many time is ,” My doctor should know who I am.” It’s a terrific quote. What do you think that means? What did Debra mean when she said it? Does it mean something different to different patients?
I think this goes back to the whole friendship aspect. She didn’t want to be seen as a cancer patient this is very similar to the wit play. Where the patient don’t want to be seen as just there cancer, Deb also said what is I just drop my body off and come back and pick it up later when your done with it but she had to be there with it and she wanted to be seen who she was which is a world religions professor at a California University. A woman who read a lot all the time was able to incorporate every aspect of her life the people she met her travels into every sentence that came out of her and she wanted to be this interest wonderful person who she was and that’s why some of her previous friends where kind of sympathetic towards her in terms of her cancer and could not see past that. She felt that she need to rid herself of them, although some people find benefit from support groups. She actually didn’t find support from support groups, she said I want to align my self with the well. I want to be with the people who are living there life cause that’s what I need to do.
How does that manifest itself in what you do that there are people who deal with support group better then others. People who don’t want to be in support groups?
Absolutely, there are many people in many ways who express that they don’t want to be apart of the cancer club. I don’t want cancer to define me. I have a life even though I’m living with cancer and receiving treatment. I’m more then just this cancer that I’m living with right now and having to go through treatment, there is a part of me that I want my doctor to know about. I think the nature of living with cancer being treated with cancer also demands more from the physicians because our physicians and medical teams see there patients far more often then a general patient who is receiving care at a general hospital. So over the course of time the patients begin to feel a closeness and a report with their doctors. They really do want them to see them as me and not just as an object.
But it’s hard not to be apart of the cancer club when you come to M. D. Anderson. So that’s the difficulty for the patients they come her for the best care which they get but they don’t want to be seen as just cancer patients. In a big place that’s hard, so that’s when I the burden falls on the individual physician more then anything else and the team and the research nurses and one of the things I want to talk a little about is did you think in any way, that your friendship with a patient ever interfere positively or negatively with your therapeutic decisions and do you think it would interfere at all with experimental therapy like clinical trials?
Let me emphasize that one I was apart of a large team of people that help take care of Deb and I think as a result of that all of us got close to her cause there was this extra wiggle room. It’s a little bit harder to get very close with someone when you’re the only person making decisions for someone. However I thought about this a lot and I really think that it’s kind of a continuum. I think that there is a very superficial brutal way of dealing with patients, you have no connection what so ever. Then I think this way where you try to be close but you actually end up projecting your unhappy feelings about your own feelings would be like in that circumstance into the situation as a result that leads to burn out. Then I think if you take it to the next step and you really know who they are and they really know who you are and I have another though on that but you do share a little about yourself with them also that you take it to that next step where you’re two are really two human beings and that you don’t have as much of a problem with burn out because it’s not just a doctor and patient. It’s two human beings recognizing the awe of life and the meaning of that person’s life and I think that the honesty is more clear at that point. That does not mean that the person will do a trial because a trial is not always the right decision for a person but you can help that person make a very informed consent because you know who they are and what means something in there lives.
You talk a little bit about burn-out, something I wanted to touch up on a little bit. When you are close to your patients like you were to Debra, once that patient dies that obviously has a devastating affect on you, did you think that there was something different about this relationship that allowed you to get past the burn-out part of that.
Well first of all writing the book with her has allowed her to live on in many ways. We talk about her all the time I see her picture all the time. I continually see her husband, daughter, and her son, so it’s almost like she hasn’t gone any where. The only thing I really miss is our discussions. I do still feel like she is there, I know she didn’t want to die at the end and that was very hard but we had a long time to recognize that it was coming. As far as do I think it’s particularly hard? It’s always hard to lose a patient but there is a benefit to getting to know the person that is healing for the physician also.
Very good, we're going to continue this conversation next week. Listeners if you have any questions about anything you heard today please contact M. D. Anderson at 1-877-MDA-6789 or online www.mdanderson.org/ask. Thank you for listening to this episode of Cancer Newsline. Again, this is a weekly series, please tune in again next week for our next episode of this series.
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