The Integrated Approach to Treating Cancer Symptoms Webcast March 1, 2012 Michael Rabow, M.D. Please remember the opinions expressed on Patient Power are not necessarily the views of UCSF Medical Center, their staff, or Patient Power sponsors, Patient Power partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion with your own doctor, that s how you ll get care that s most appropriate for you. Cancer Symptom Management Cancer symptoms, ranging from pain to anxiety, often occur during and after treatment, and they can be pretty tough on people. Well, coming up we ll hear from an expert in symptom management as he shares approaches available to help get relief. It s all next on Patient Power. Hello and welcome to Patient Power sponsored by UCSF Medical Center. I m Andrew Schorr. I am also a cancer survivor long term, and although I went through treatment back in 2000, quite a while ago, and I m happy to say I m a long-term cancer survivor as many people are now, an increasing number, it was hard. Nausea, fatigue and other issues, and of course my goal was to beat the cancer, and other people have other side effects of treatment or other issues that come up, and it could be depression. That s not at all uncommon. Is there a group at a medical center, like a leading medical center like UCSF, where there are people devoted to helping you with those aspects of what you re facing? And at UCSF there is a group like that, and it s called the Symptom Management Service, and the director of that service at the UCSF Helen Diller Family Comprehensive Cancer Center is Dr. Michael Rabow, who joins us today. Dr. Rabow, these issues are real, aren t they? I mean, I mentioned nausea, fatigue, but there s also pain, anxiety, lots of stuff, and your service is designed to help. How can you help? Well, you re exactly right. The issues are real, and they re incredibly common. The fact is that I think almost every person who walks through the doors of a cancer center or into an oncologist s office is scared, is suffering from anxiety, is worried about what their future is and how things will be for themselves and for their family. We know that even people who have cancers that are eminently treatable are sometimes just as worried as people who have the most severe and lifethreatening kinds of cancers. So all sorts of people who are receiving treatment for cancer have emotional strain. 1
The physical symptoms that you talked about are incredibly common. People worry about pain, but even more common than pain is fatigue. Fatigue is a real fundamental impact on people s quality of life, how they re able to perform and function in their personal and professional lives. So there is a whole series of symptoms that are incredibly common. But, they are not limited to just physical or even emotional symptoms, there is also what I call existential, or some people would call spiritual symptoms, which are are almost universal. People worry about what it means, what their lives hold for them, what the impact of their cancer will be on their relationships, on their history, on their legacy and on their future. So the potential to address these symptoms is something that we have been exploring and have proven at UCSF and other places that with some relatively simple and direct interventions and support people can do much better as they face their cancer. And I think the biggest point to make is that it s not an either/or decision, that you don t either have to focus on the quality of your life or the quantity of your life. Concurrent with fighting as aggressively as you possibly can to control the cancer, to cure the cancer, you can and should simultaneously focus on controlling symptoms and improving your well-being. For a long time we thought that it was it was an either/or, that we shouldn t distract ourselves at all from the efforts to cure a cancer with paying attention to pain or other pesky symptoms. Now I think we have a much more accurate and fuller understanding, which is that controlling symptoms, improving quality of life actually contributes to the best cancer treatments that we can provide. In 2010 in a study out of Harvard University a researcher and oncologist Jennifer Temel conducted a study that showed that people who got early attention to their symptoms and quality of life, to their depression and their pain actually lived longer than patients who were receiving only just the routine cancer treatment without the additional palliative care, without the additional focus on the quality of their lives and their symptoms. So we now know that it s not an either/or situation, that actually attending to palliative care, attending to symptoms, attending to quality of life helps people living longer. Let s understand how it works from a practical sense. So let s say at your center, at UCSF, someone is being treated over many months, let s say for breast cancer. How can your symptom management service be involved in--how does that happen and what would happen? Patients would be seen by their cancer team, get chemotherapy or radiation or surgery for treatment of their breast cancer, and at the same time, perhaps even on the same day that they come in for chemotherapy, they might have an appointment with the Symptom Management Service where they would meet typically a physician or nurse practitioner as well as social workers, perhaps a chaplain as well, and focus in on some of these symptom issues that we were talking about. So simultaneous to the cancer treatment they would also be 2
receiving treatment from experts in palliative medicine and symptom management. So they d be getting treatments for cancer and at the same time they d be getting treatment for their symptoms. So if they are feeling nauseous as a result of chemotherapy we can help support, add a layer of support to their oncology care by focusing in on how to treat their nausea. If they are burdened by fatigue, by pain, by anxiety, by depression, we will focus on those simultaneously. So we ll often have visits with people on the same day that they re in the cancer center for cancer treatments. We also support people over the phone and via e-mail to really maintain a real scrupulous attention to controlling symptoms. Understanding Palliative Care Now, you use a word along the way I want to ask you about, and that was palliative. And for those of us who have been around this for a long time we used to think of palliative as trying to help somebody be comfortable when maybe-- cancer or otherwise--they didn t have long to live, but you re not defining it that way. You re talking about support, somebody may be going through treatment, they may live many, many, many years, hopefully a full life, but there are some issues that need to be supported. Did I get it right? You did. Palliative care is a very broad term that refers simply to clinical, medical, nursing care that s focused on improving the quality of a patient s life and managing their symptoms, supporting their family, and essentially helping them achieve the goals that they have for their own life. So it does not exclude any other type of care or even any other goals of care. It s really an added layer of support on top of all the other care that people might be receiving. So it s not limited at all to people who are at the end of life. Now, when people are at the unfortunate inevitable situation of being at the end of life, their goals of care may really collapse down to just an exclusive focus on the quality of their life. When cancer can no longer be controlled, when people are in their last days or months, then appropriately they are receiving something that I would call end-of-life care, really helping them in their last period of life. But the vast, vast majority of our lives are spent with a goal to do both, to really focus on prolonging our lives as long as we can and improving the quality of our lives. So palliative care is really mostly a focus on simultaneously working to try and control disease as well as maintain a good quality of life. So it s no longer an either/or situation. Dr. Rabow, let me ask you about this: There are some people when they re diagnosed with cancer and they know they re going to have aggressive treatment. They opt for that, and maybe that s the best choice. They feel strongly about it. They also feel they have to tough it out, that they are going to have nausea 3
perhaps or maybe they ll lose their hair or maybe they ll be tired, and that s just the way it goes and they need to accept that as part of this battle of fighting cancer. I know you probably have different views of that and that people have the right to have a higher quality of life while they try to cure the cancer if they can. So, I think that there is no denying the fact that cancer is hard. Managing cancer, treating cancer, fighting cancer is a difficult thing to do. It s a challenge. The treatments are difficult. But that is not to say that there is any benefit in having the treatments be as difficult as they can be. In fact, we can do a lot to improve people s experience of treatments by controlling symptoms. And it s not really just a simple question of do you have to bear it, do you have to get through it because increasingly I think we are learning that treating symptoms, controlling depression has an impact on the outcome of cancer. So there isn t any benefit in suffering through treatments, and there may be actually a disadvantage to experiencing a lot of symptoms during the course of cancer treatment. So an example would be around physical fitness. We know that at any state of health, in the face of any illness, being physically fit is a good thing. Your body functions better when you are fit. And so being able to do some exercise and maintain physical fitness actually promotes health in the course of cancer treatment. And so being stuck in your home because you re too nauseous or in too much pain to leave the house or get some exercise is of no benefit to you, and in fact it may be limiting the ability to fight the cancer. Let me play devil s advocate for a second, and I m sure families have spoken to you about this. And they say, well, Mom is going through care, and yes, she has pain, and yes, maybe you can prescribe some pain medicine, but I m worried about Mom becoming a drug addict. I m sure you hear that all the time, and yet you have very effective treatments that are safe. So talk about that for a minute, just pain management as an example. Sure. So people do worry a lot about addiction and misuse of pain medicines, and in the vast majority of time people s worries are unnecessary. There are absolutely people who have an emotional or genetic predisposition to use chemicals to cope, and for those folks any exposure to chemicals that might be addictive carries with it some risk. But for the majority of patients with cancer, chemical coping is not an issue, and in the setting of medication they re using for pain, addiction is not an issue. For most people when you re using pain medicines for pain, in a way the pain medicine gets sucked up by the pain, used up by the pain, and people aren t left getting high. People don t typically misuse the medicine. The simple rule that I follow is that the goal of controlling symptoms is to improve people s function, to help them feel more like themselves, to go through cancer treatment feeling as much like yourself with all your strengths and resources as you possibly can. And so that s a nice sort of ruler to measure the effectiveness of what 4
we re doing. If it looks like someone is misusing the pain medicine it s definitely something that we would address, but for the vast majority of people controlling their symptoms with pain medicine including the strongest pain medicines we have actually helps them function better, be more of themselves, get back in the car and drive, get back to work, get back to child care, get back to the hobbies and the things that they like. Accessing Symptom Management Wow. So I guess we re very fortunate that you have this service at UCSF, and I know it s at other leading medical center too. So how does a patient get started? Does the oncologist initiate it, or can the patient say I understand there s a symptom management service and I wonder if a consultation there could be helpful? So at UCSF the process that we have is getting referrals from the oncologist or radiation oncologist or surgeon of a patient to the service. Now, that s not to say that patients and families can t request a referral from their oncologist knowing that this service exists. The presence of outpatient palliative care clinics like the Symptom Management Service at UCSF is growing across the country, although UCSF is one of the few major medical centers that has a very, very active and large program. So although the programs do exist and they re probably growing in scale and scope across the country there is still an inadequate supply of palliative care services and expertise given how much suffering there is and how many patients face cancer every year. So to a certain extent in addition to having services like the Symptom Management Service it s also really important that frontline cancer clinicians of all different types, nurses, nurse practitioners, physician oncologists, learn some of the basic skills of palliative care so that they can treat some of the basic issues that most or many people face. So if you are in the San Francisco Bay Area and go to UCSF Medical Center for cancer care or come from afar to go there, then you want to inquire, Is the Symptom Management Service an option to help support me or a loved one as you re going through care or after care, symptom management, pain, fatigue, depression, anxiety, the whole host of issues we ve discussed. If you re somewhere else, see is there a medical center where you may be going where this is available, or with your local oncologist, bring it up [and ask], What about the management of symptoms that are important to me while we fight the cancer? Did I get it right? You got it right. Just the other day, ASCO, the American Society of Clinical Oncology, put out a paper saying that palliative care needs to be integrated into routine oncologic care, which is to say that there is real recognition now among 5
oncologists that palliative care is a routine part of the best cancer care that you can get. Well, I think it s great that you have that service there, and it s great that you have this commitment now growing in oncology to help all of us with all these symptom issues that can come up that affect our quality of life, and hopefully as we live longer there will be folks like you, Dr. Rabow, who are there as our partner and your service along the way. Thank you for what you do. We really appreciate it. Oh, my pleasure. I really appreciate the chance to serve. And that s Dr. Michael Rabow, director of the Symptom Management Service at the UCSF Helen Diller Family Comprehensive Cancer Center in San Francisco. I m Andrew Schorr. Thank you for joining us. Remember, knowledge can be the best medicine of all. Please remember the opinions expressed on Patient Power are not necessarily the views of UCSF Medical Center, their staff, or Patient Power sponsors, Patient Power partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion with your own doctor, that s how you ll get care that s most appropriate for you. 6