Creating Tools For Better Doctor-Patient Communication
Vital Options presents Advocacy in Action (AIA), in partnership with the ESMO Cancer Patient Working Group and in collaboration with the ECCO Patient Advisory Committee. This six-part AIA Forum brings together influential leaders in cancer advocacy, to address the core issues that impact cancer survivorship.
Joining Vital Options CEO, Selma Schimmel, will be AIA co-chair Lorenz Jost, Chair of the ESMO Cancer Patient Working Group, joined by co-moderators Stella Kyriakides, Chair of ECCO Patient Advisory Committee and Europa Donna; Cora Honing, European Cancer Leagues (Dutch Cancer Society); Louis Denis, Europa Uomo; Richard Sullivan, Eurocancercoms PatientView Survey; Francesco De Lorenzo, European Cancer Patient Coalition; and Jan Geissler of CML Advocates Network. Special guest, ESMO President David Kerr, will join leading patient advocates across disease areas in this vital discussion for the European and international cancer patient community.
For more information on ESMO Guides for Patients, CLICK HERE.
Advocacy in Action at the 2011 European Multidisciplinary Cancer Conference was made possible, in part, by:
VIDEO TRANSCRIPT
Selma Schimmel, Founder & CEO, Vital Options International:
How do we talk about managing late side effects, long term side effects, how do you talk about recurrence? Really this is a doctor-patient communication dilemma and addressing a survivorship, long term survivorship issues. So we’re going to start with Doctor Lorenz Jost who is chair of the ESMO Cancer Patient Working Group. As a medical oncologist obviously you’re aware of communication issues with the cancer survivors and I’m hoping that what you can do is sort of outline the major topics that medical oncologists discuss with their patients regarding health management, and late side effects of cancer treatment, and also the risk and issues of recurrence.
Lorenz Jost, Chair, ESMO Patient Working Group:
Yes, that’s a sensitive topic. We follow the patients at the end of the treatment when you start to talk about recurrence you shatter their hopes and it’s delicate matter, and you have to find the balance between getting the patient aware that he has to follow his symptoms and to report the symptoms to his physicians. Not to destroy all the hope they have gotten at the end of the treatment, and of course late effects are also of concern and we have to make the patient aware that they can occur. Fortunately most of the side effects the patients have accrued during the treatment will subside slowly but they will subside in most instances, and it’s not the time here to go into what can happen. Regarding late side effects that surface after end of treatment I will restrict myself to a very few topics. For instance, toxicity of the anthracyclines and you have to make the patient aware what the symptoms are of beginning heart failure like fatigue, shortness of breath, constant coughing like that, and make sure that they report it to their physician, family doctor or their oncologist, if they develop such symptoms.
And other topic you need to discuss after radiation especially is pneumonitis after radiation if similar symptoms of shortness of breath and coughing which can happen couple months to maybe six, nine months after the radiation, they also have to report these symptoms, and they can be treated with steroids and therefore it’s important that they come to the doctor and get the treatment before they have a chronic fabrosing condition of their lungs.
Another late side effect for instance could be premature cataract opacification of the lens where the vision becomes blurred which can happen just because of the steroids we use during antiemetic treatment, and of course also it’s used by radiation to the eyes. These are symptoms that the patients must be aware of and that they must report and another thing of course, regarding recurrence is that they should live healthy life that they probably have lived before. They should stop smoking, they should avoid overweight, they should do light exercise which also helps against fatigue, they should eat healthy food – that’s other things on topics we have to discuss with the patients. And last but not least they should follow the appointments regarding the follow-up and screening for their relapses.
Selma Schimmel:
And I’d like to throw out either as a question or statement two other areas. One, especially with our breast cancer survivors the importance of following our health care with our internal medicine doctors, our general doctors, we tend to focus on – I’m a multiple time cancer survivor – we tend to focus on our oncology risk and then we have a whole spectrum of other issues that we have to stay on top of. But also the special consideration of pediatrics, adolescence and young adult survivors because these are patient populations that have other long term risk factors and long term post-treatment effects that are rather unique.
Lorenz Jost, Chair, ESMO Patient Working Group:
That’s indeed the case. Especially significant for instance in Hodgkin’s patients that had the combination of chemotherapy and radiotherapy to the (inaudible) to the thoracic. And they have not only risk regarding premature cardiac disease, they have also risk if they are women of premature breast cancer, and they indeed need to be followed especially carefully to avoid late stage breast cancer in those patients.
Louis Denis, Europa Uomo:
Well, talking about prostate cancer and survival, I think we all agree that cancer became a chronic disease, especially prostate cancer, in the first place means longer survival more survival means more patients more money. And I disagree with the more money because there is no ‘more money’ for our systems. So I have a long list about eight points where I think that you can put it down in one sentence good quality care cost less, and this is what we have to achieve.
One of my hang-ups is that we do need to revamp the system of (inaudible). It’s supping the strength of the industry. It’s taking a lot of time before medication comes in the answer of the medical oncologist and the patients. And so I hope that in the future what we are doing in this congress is collaborate and make things a little bit closer together and make progress just by providing better, general, and specific patient care. Thank you very much.
Selma Schimmel:
Professor De Lorenzo, obviously this is a priority discussion for ECPC so please comment on areas of information that you feel need to be improved upon.
Francesco De Lorenzo, Board Member, European Cancer Patient Coalition:
There are several questions. First thing is how to establish a follow-up? I mean once the cancer patients finish the first part of their therapy then leaves the oncologist, what should it be done? What is the role of the general practitioner? What is the things the patient has to know? What should they be told about of rehabilitation because we know that – now in Italy we have two million point three people that had the cancer, more than one million eliminates us ten years. But the quality of life of these patients is really poor. There’s no one to tell them about rehabilitation, about physical rehabilitation, about so many other things. So I think that is very actual, very important, first of all to see what’s to be the information that the patient should know the moment they finish the first part of therapy. And the head from the oncologist also some indication of what might be late effect to actually rehabilitation. Because we know that people are becoming more and more chronic, so it is becoming a big problem also for economical point of view.
So it’s important to distinguish because I think it’s also a problem to avoid people go always to the hospital of oncologists once they are out of their illness. This is main question and I won’t go into details in addition to the late effect here that we know that there are patient don’t ever think it. So I will really appreciate it if ESMO could really put their attention on this and try to do some work with cancer patients because this is a major problem for the future.
Jola Gore-Booth, Europacolon:
I wanted to pick up something on what Professor Jost said at the beginning. And I’m sorry if I appear controversial here and I don’t mean any disrespect, I’m working only on facts. One of the problems that I have seen is the delivery of the information. It varies so dramatically, and I feel so strongly that one of the things that needs to be done is some education in communication amongst clinicians because I’ve sat in on clinics where information has been delivered in such a bad way that I’m surprised the patient hasn’t gone up and thumped the doctor with the greatest respect. And yet I’ve seen information delivered in such incredible sensitivity and caring, and I think our young doctors have got to be trained how to deliver the information. And I think there isn’t enough money out there to fund these communication courses, and they don’t have to be complicated as some of them are.
And I know Leslie Fallow-Field does them, I know Glin Jones does them, and I really, really think it’s the most important part of how a patient then copes with their disease.
Cora Honing, International Relations Officer, Dutch Cancer Leagues:
I’ve been working in the area of patient information for a long, long time, and some of the items raised here have a long history as well. But perhaps we could focus on new developments, especially when financial restrictions are coming up and economics are very tight. We are talking about information need of the patient, and on the other hand the obligation to deliver information. Perhaps we have been talking about a screening during the conference in Brussels. There is a screening tool that could help patients to formulate what questions they have, how they feel – physically, mentally, socially – and that could be a helpful tool in communication with the doctor. The doctor knows what’s worrying the patient, what questions are open, and perhaps that could stimulate communication, and will make it more tailor-made for the patient.
Stella Kyriakides, President, Europa Donna, Cyprus:
As chair of the ECCO Patient Advisory Committee along with many of my colleagues here today, I think the fact that these committees exist and as a working group allows for doctors to see the patients are actually present at big meetings like this one, and that multidisciplinary is not just a word but it is something that actually does happen and that we are part of this partnership together. And hopefully this will also allow to change the way that younger doctors look at the patient-doctor relationship. Just because we are now being given and I want to say that we’re very happy about this, a more important a role where these decisions are made. And I think that this is important. I was coming out of the train and I saw ‘patient advocacy’ in big writing outside as we were getting off, and I thought ‘well yes, a lot of medical professionals will be getting off and will be looking at this’ and it’s a term that you will have seen maybe ten years ago. So it’s a message, and it changes the mindset that people have.
Selma Schimmel:
Living with cancer is a chronic disease I think it’s very important for patients because it’s not a bad thing. It’s actually – if we can learn to co-exist with our disease and how we integrate the disease into life and the longer we are surviving cancer the more we’re going to be learning about some of the side effects that we don’t know about today. So it’s not a bad thing to begin to present to a patient that you co-exist and this is a chronic disease and along the way, every year of your survivorship, we’re going to learn something new about you as an individual.
END OF VIDEO