Charles F. von Gunten, MD, PhD; Jamie Von Roenn, MD


June 18, 2012

Editorial Collaboration

Medscape &

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Charles F. von Gunten, MD, PhD: Hello. I am Charles von Gunten, Clinical Professor of Medicine at the University of California at San Diego. I am also Provost for San Diego Hospice and the Institute for Palliative Medicine. Welcome to this edition of Medscape Oncology Insights in palliative care, coming to you from the 2012 annual meeting of the American Society of Clinical Oncology (ASCO®). Joining me today is Dr. Jamie Von Roenn. She is Professor of Medicine at Northwestern University, and she is also Founding Medical Director of Northwestern Memorial Hospital's Palliative Care and Home Hospice Program.

Jamie, what have you noticed about palliative care at this meeting as opposed to all the others that we have been going to together?

On the ASCO Periphery No More

Jamie Von Roenn, MD: Probably the single most striking thing is that it is more present, that you feel it not just in the corner of the room where the palliative care abstracts are being presented, but it's more integrated into the meeting as a whole.

Dr. von Gunten: I certainly am seeing that too. In years past, there was a group of devotees in one room who thought this was important, and now you hear the word in every session, in every disease group. What is the most important information that has been talked about as a new development in palliative care at this meeting?

Dr. Von Roenn: The most important new development may be just that people have embraced palliative care. It isn't one particular abstract. It's that oncology as a whole is recognizing that palliative care is an essential component of treatment for cancer patients, not just at the end of life, which is the mistake too many people have made, but throughout the continuum of care.

Dr. von Gunten: That is what I am seeing as well. Jennifer Temel's paper,[1] which showed how well patients with lung cancer did when palliative care was included from the time of diagnosis forward, made oncologists take notice. I am hearing references to that paper in every session, and there's energy focused on how to get this into the rest of cancer care.

Dr. Von Roenn: And it hasn't just been about cost, which at some point was the way people approached it. In multiple presentations today during the oral session on symptom management and patient care, mention was made of Dr. Temel's paper and studies that were trying to replicate that work, and to find simpler and easier ways to integrate palliative care.

Study: Video Aids End-of-Life Decisions

Dr. von Gunten: You and I were both taken by the study that used videos in helping patients and families come to decisions.[2]

Dr. Von Roenn: Yes, it was a study from the Temel group that looked at how we present do-not-resuscitate orders or the desire to be resuscitated at the end of life. It looked at the usual approach, which amounts to physicians describing cardiopulmonary resuscitation (CPR) vs telling patients that they are going to educate them about CPR, showing them a 3-minute video, and then asking them about the video. The video was a real-life example of CPR, and it had an astounding effect, as you noted too.

Dr. von Gunten: It is always nice when studies like this relate to other findings that have been published. I remember distinctly the use of videos to help African Americans talk about feeding and nutrition issues for patients with advanced dementia [3] and, similarly, the use of videos with Hispanic patients and other cultures that generally have trouble talking about limiting or withholding healthcare towards the end of life. It seems that putting this information on video -- making it real -- helps to overcome differences.

Dr. Von Roenn: It is a key educational message that people don't necessarily understand what we say, but when they see it, when it seems real and personal, they suddenly understand it. In this CPR study they not only looked at changes in preferences of the patients for CPR but their understanding of what CPR was. The investigators asked 4 key questions about the patients' understanding of CPR before and after the video or discussion, and only the patients who saw the video had an improvement in their level of knowledge about CPR. One might worry that a video would be coercive in some way, that you might be biasing people to choose CPR. But when they asked patients how they felt about the video, they weren't uncomfortable; 97% of patients with advanced disease watching this video said it was helpful and would recommend the video to another patient. So, it was obviously well done and patient-sensitive.

Educating Oncologists in Palliative Care

Dr. von Gunten: That relates also to the education of oncologists and how they can better incorporate palliative care as part of their daily practice. Many medical societies have listed the top 5 things that oncologists should stop doing because they are not adding to quality of care, and they make the cost of care higher. Number 1 on that list is to stop giving chemotherapy when it's not going to work anymore. As I reflect on that, oncologists won't do that unless they see someone else doing it. Just telling somebody about it doesn't change the way they look at it. They need to see someone else do it. They need to be trained by doing.

Dr. Von Roenn: It's more than that. People have to see the benefit of doing it. When they say, "I don’t think chemotherapy is the right thing to do anymore," they have to have something else to offer. So, they need to recognize that excellent palliative care is not doing nothing. It offers something very important at a very intimate and sensitive time in the family's experience.

Dr. von Gunten: It is a point that you have made throughout your career: that if palliative care starts from the moment the person encounters his or her oncologist, if attention to physical symptoms, emotional issues, practical issues, and spiritual issues is part of the relationship from the beginning, then when you come to the point when chemotherapy is no longer going to be helpful, all palliative care can continue. It's not a "dropping off the edge" feeling.

Dr. Von Roenn: It is not just the doing of the palliative care; it is also the discussions. When someone presents with metastatic disease, you excitedly present therapy (which is appropriate, for example, in a metastatic setting such as breast cancer for which there are many therapy choices that do affect outcomes). You say, "Well, this is the right thing to do now, and we should do it. But there will come a time when it is not the right choice. Then you can drop it. You don't have to slap them in the face by saying, "Ultimately these drugs won't work." When you change therapy the next time, there are still exciting options. In fact, there were some discussed at this meeting. It is important to again say that at some point this won't be the right choice. Then when you get there you can say, "Oh, remember when I said....?" Because you have already planted the seed, they know that "one of these days" has come and that is where you are. It opens the discussion in a way that is much easier, not only for the professionals but for the families.

Choosing Wisely Through Palliative Care

Dr. von Gunten: Of the things that were next on that list, 3 of them were about not doing routine PET scans on people who have finished therapy. There is no evidence that doing a PET scan every 3 months will actually change the outcome. But that strikes me as another example of where palliative care, if integrated from the very beginning, helps make that transition smoothly, because fundamentally it can help lower anxiety. In my experience as a practicing oncologist, when there is no more therapy, you say, "You are well, you are fine. The chemotherapy has worked. You have no cancer anymore." People are terrified that it is going to come back. If you don't have a way to address the anxiety, the test becomes the thing you do because you don't know how to support the person in their anxiety about being a cancer survivor.

Dr. Von Roenn: That is exactly what I present to my patients: that we don't want to do this because it is actually more anxiety provoking. If we find something, even though it may be meaningless, we are all going to feel compelled to chase it to the point of biopsy when it doesn't affect your survival. It also opens the chance to talk about why that is true, which is that metastatic disease, at least for the disease I treat, isn't curable. Finding it earlier when the patient is asymptomatic has not been shown to affect outcome. It allows you to prepare people for the possibility that they could still die from this disease despite therapy that has rendered them disease free, as best that we can tell, and to set the stage for future conversations should you need them.

Hope for the Best, Prepare for the Worst

Dr. von Gunten: The phrase that comes to mind is "hoping for the best, preparing for the worst." It doesn't have to be either/or. We can do both of those things with our patients. They understand that phrase, and helping them get on with living after the cancer therapy is done...It is amazing to me how many patients actually find that very frightening. They want to keep coming to see me. They want to come and see you. Somehow seeing us will prevent the cancer from coming back.

Dr. Von Roenn: Patients will say that if you ask them about it. It is fascinating. I have people in my practice that I've seen for 10-15 years, and I say, "You really don’t need me." They say, "Oh yes, I do." I say, "Well, why don't we leave it open. See your internist, and if something comes up, feel free to call me." Most of them can slowly move on with their lives, which was the goal in the first place.

Comprehensive Cancer/Palliative Care

Dr. von Gunten: What both of us are seeing at this meeting is that palliative care more than ever is being talked about as part of standard oncology. Comprehensive cancer care means comprehensive palliative care woven into the course of the disease from the beginning to the end of treatment, whether the person is going to be a long-time survivor or not. Those elements and those skills need to be part of every oncologist's practice.

Dr. Von Roenn: The excitement comes from the lead-up to the meeting, with multiple publications supported by ASCO® regarding the integration of palliative care and announcements that ASCO® is considering increasing the educational programs related to palliative care, having all of its different committees address the focus of palliative care as appropriate -- whether it is government issues, education, or programming.

Dr. von Gunten: Jamie, thank you so much for spending time talking about this with me today.

Dr. Von Roenn: You are very welcome. I love speaking with you about this. It increases my excitement about the integration profoundly.

Dr. von Gunten: I am excited too. This is something we have hoped for in oncology for a very long time and now it is actually happening. Thank you for joining this edition of Medscape Oncology Insights. This is Charles von Gunten for Medscape Oncology and the Institute for Palliative Medicine.


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