Richmond Town Hall Transcript
Hard Diagnosis, Soft Landings:
New approaches to treating life-limiting illnesses through palliative care
Tuesday, September 28, 2004
Massey Cancer Center
Virginia Commonwealth University
Richmond, Virginia
Speakers:
Catherine D. Harvey, DrPH, RN
Chair, Board of Directors
National Coalition for Cancer Survivorship
Gordon D. Ginder, M.D.
Professor of Internal Medicine, Human Genetics, Microbiology and Immunology
Director, Massey Cancer Center
Virginia Commonwealth University
Ellen L. Stovall
President & CEO
National Coalition for Cancer Survivorship
Thomas Smith, M.D.
Professor of Medicine, Chair of Hematology/Oncology and Palliative Care
Massey Cancer Center
Virginia Commonwealth University
Randy Axelrod, M.D.
Vice President and General Manager
Health Care Management,
Anthem Blue Cross and Blue Shield, Southeast Region
Sherman Baker, M.D.
Medical Director, Hematology/Oncology Clinics
Massey Cancer Center
Virginia Commonwealth University
Julia Rowland, PhD
Director, Office of Cancer Survivorship
National Cancer Institute
National Institutes of Health
MS. CATHERINE HARVEY: We'd like to get started. My name is Catherine Harvey, and I am the Chairman of the Board of Directors of the National Coalition for Cancer Survivorship. We want to welcome all of you tonight to our Town Hall entitled, very aptly, Hard Diagnosis, Soft Landings. The National Coalition for Cancer Survivorship may be a new name to some of you. We are the oldest survivorship organization that advocates on the behalf of cancer patients in this country. Our mission, in fact, is to advocate quality care for all Americans. It is for that reason that we have taken a focus in the last few years of really working with the cancer community to focus on how we live with cancer. One of the things that we know that's incredibly important to people who experience cancer and to their families is to have quality symptom management and palliative care throughout their disease, and that's what we are here to talk about tonight.
We want to thank the Massey Cancer Center and the team at their Center for hosting us tonight. They are really people that you should be very proud of. They are leading this charge, and we are going to hear a bit more about them. We also want to acknowledge the other team members who are here and, in fact, Dr. Julia Rowland who is the first director of the Office of Cancer Survivorship and is working with us to really help us understand and do the research that is so needed in this area. We also want to acknowledge the Lance Armstrong Foundation for this evening. They are our sponsor and have been very committed, as we are, to working with, living with, beyond cancer. It is now my pleasure to introduce Dr. Gordon Ginder. He is our co-host for the evening. Many of you may know him. Dr. Ginder is the director of the Massey Cancer Center here at VCU. He is active as practicing oncologist, working in both clinical research as well as care of cancer patients who have blood and lymphatic diseases. He works actively in bone marrow transplant and has been continuously supported by the National Institutes of Health and the National Cancer Institute for more than 20 years. He is the recipient of the NIH Merit Award, which means he is really quite a distinguished researcher. And for that, we really appreciate him being with us tonight. Dr. Ginder.
DR. GORDON GINDER: Thank you, Catherine. And I want to add my welcome to all of you on behalf of Massey Cancer Center, VCU. I also want to add my tribute to you for venturing out in what seems to be our every-two-week hurricane threat. It's kind of become a routine here in the last couple of months. As an NCI-designated cancer center at Virginia Commonwealth University, our mission at Massey Cancer Center is really to meet the NCI director Andy von Eschenbach's challenge to relieve suffering and death from cancer. This means not only working to develop better treatment, better prevention, better detection for cancer but also, importantly, to work toward improving the quality of life of all patients with cancer, regardless of whether they can be cured or not. Palliative care, therefore, has a high priority at Massey Cancer Center, because we take seriously that mission. And I am very proud that our Thomas Palliative Care Unit at Massey Cancer Center is one of the CAPC Palliative Care Leadership Centers funded by the Robert Wood Johnson Foundation. I'm also very proud of our team, all the way from the top down, of people in our palliative care program — and many of them are here tonight — for the job they do every day, working hard to make the quality of cancer patients' life better. I think I'm going to make my remarks short. But before we go further in the program, we'd like to show a brief video to sort of set the stage for the discussion in the rest of our program and to illustrate some examples of the exemplary palliative care that we believe we are doing here at VCU's Massey Cancer Center and at Fairview Health System in Minneapolis, which is another of the CAPC Leadership Centers. Thank you.
MS. ELLEN STOVALL: Good evening. I want to say a special welcome to Helga Remler who is here. We invited her to make some remarks tonight, but she said she was too nervous. I am, too, but I didn't get excused. But, Helga, thank you for being here, (applause) and sharing the beautiful, beautiful life story with us, your experience here at Massey. My name is Ellen Stovall. I am a two-time cancer survivor, and I am president of the National Coalition for Cancer Survivorship. I want to thank all of you for being here tonight, coming out on a not very pleasant evening weather-wise. But it means so much for us to be here and be part of this gathering. I have long admired the work of Tom Smith, who you will hear from soon. But learning about this program and understanding the wonderful services that are available to people here in this community makes me wish that every cancer patient could avail themselves of the kind of services that you have here at the Center. You should be very, very proud.
The team of professionals here is helping patients with cancer and their families live as well as they can for as long as they can. And when it comes to helping people die, doing that as well as they can, as well.
At the National Coalition for Cancer Survivorship, a lot of people have remarked to us over the years, the term survivorship, you know, "what are you doing talking about dying." And as a physician at Dartmouth years ago said to me, that he really believes that we are the only society in the world that sees death as an option. And since we all have to do it, we may as well do it better and well. And so we are here tonight to just be frank and honest about how maybe a community can work and can make services available to help people make those transitions.
Our efforts at NCCS are focused in several areas. In the program area, we have many, many programs that help people become self-advocates and help people let their cancer experience be much more self-directed in a way that they would want to live their life with a life-limiting or lift-threatening disease. And I want to direct you to a number of free and very accessible services that NCCS has, mainly through our website. We have a Robert Wood Johnson grant that allowed us to really make our website very patient centered and very patient focused around what we call Essential Care, what other people call palliative care, what some people call symptom management. We are really focusing on all those essential services that people with cancer should be able to have but which our current system of reimbursement and our current Medicare-directed healthcare system nationally really regards doing procedures on people and doing interventions that help them survive well, really emphasizes that part of cancer treatment and undervalues, we believe, these services that are provided here in this institution.
So our website is a great resource for you. We also have these Town Hall meetings. We are doing one at Fairview, which is why that program was also included in this video which we will show there at the end of October. And we work one-on-one with legislators and government agencies in Washington to advocate for better Medicare coverage for palliative care and all of these services.
One of the people that NCCS thinks of when describing quality cancer care to our elected officials in Washington is our next speaker. Tom Smith is someone who, for me personally and for NCCS, represents all that is good about how to care for people living with and dying from cancer today. He is a leader both in thought and in deed and has both the compassion and the humanism we should all hope to encounter if we are diagnosed with cancer. He has an active practice here in medical oncology, concentrating on new treatments for breast cancer and for symptom control. He currently serves as Professor of Medicine and Chair of Hematology and Oncology and Palliative Care at the VCU Health System and is medical director, in his spare time, of VCU's Thomas Palliative Care Unit — which I visited today, which is a wonderful testament to your work.
You saw him briefly on the video, but it is my pleasure to invite him to explain further the merits of palliative care. Tom.
DR. TOM SMITH: Thank you. And thank you all for braving the remnants of the hurricane here.
The Thomas Palliative Care program began in May of 2000 — seems like a long time ago now — with support from the Thomas Hospice Foundation, now the Thomas Palliative Care Foundation, VCU Health System and the Jessie Ball duPont fund. It was the first academic-based palliative care program in the country, or center, and the only one in the cancer center — in a cancer center.
You may ask what is palliative care. One of my surgical colleagues, George Parker, once said, "Well, palliative care is like pornography. It's hard to define, but you know it when you see it."
Palliative care is care delivered right alongside medical care. It's not anything that's really different. It, however, concentrates on open and honest communication, setting of reasonable goals, but really concentrating on symptom control. It builds on the long tradition of hospice care and its excellence in the U.S. and in England, which is care given at the end of life to help keep people home and functional. One difference is that palliative care can start any time.
Symptoms are symptoms. And if you are 37 and are undergoing therapy for breast cancer and have mouth sores and hurt, and have terrible diarrhea and nausea, et cetera, those things are just as important to you as they are to somebody at the end of life.
One big difference is palliative care is multi-disciplinary. There is the occasional physician like me who does palliative care, but, more importantly, there are nurse clinical specialists and nurse practitioners. Patrick Coyne here is in the audience. Patrick knows more about palliative care and symptom control than any ten physicians, I think. Wonderful nurses on palliative care. Physical therapy — you saw Bobbie Johnson, our occupational therapist. Social workers. All thinking about how to make the person more functional. Also includes chaplains, bereavement counseling. We have a psycho-social nurse oncologist who works with us. After all, there are a lot bigger questions to life than, oh, when is my next pill coming.
Palliative care serves everybody who needs it; it's not just cancer. We thought when we started that we would see mostly cancer patients. In fact, most palliative care programs now serve only half cancer patients. The other are people with strokes, heart disease, liver failure. For a while we joked that it was encouraging to see that people died from something else other than cancer.
We are even trying to move upstream for the working adults. It turns out that 18 percent of working adults getting therapy or adjuvant therapy for cancer leave the work place. And we are hoping that if you can relieve their symptoms, you can actually keep them working and employed.
Most importantly, I think palliative care works. We can show that palliative care pain scores are cut in half. Depression can be diagnosed and treated. Distress can be helped. Families and patients can get useful information on what's likely to happen — not just from me but from all the wonderful nurses who work in the palliative care program. We try to get people home or home with hospice. And over half of our patients typically go home; that's not their final admission to the hospital.
What we are finding with some of our research is that people may even live longer if they can have reason to live. Their symptoms can be controlled and they can live better. And, most importantly, I think palliative care is growing. When we started back in 1999-2000, there were just a handful of programs in the United States. Now there are close to a thousand. Every Center to Advance Palliative Care program meeting that we have, there are another 250 centers thinking about "How can we improve the care of people with multiple symptoms in our hospital in our health system?" I think that's the real testimony to the fact that it works. Thank you.
MS. ELLEN STOVALL: Thank you, Tom. We have a few more speakers. And just so you know, if you have looked at your program, we are going to be opening the whole thing up to a discussion, which is really the most important part of the evening for us and, I hope, for you as well. So as people are talking and saying things that might evoke some questions in your mind, there are people in the room that have cards you can write them on, index cards, if you don't want to get up and ask them directly. So just be thinking of the questions you may want to ask later.
Our next speaker is Dr. Randy Axelrod. Randy is Vice President and General Manager, Health Care Management of the Southeast Region at Anthem Blue Cross and Blue Shield. There, he is the senior executive responsible for Healthcare and Disease Management, Pharmacy, Provider Network Management, Clinical Informatics, Quality Improvement and Community Health. Dr. Axelrod has lectured and has instructed across the country on Quality Improvement and Clinical Informatics.
I'm so glad to see him again. I was acquainted with him a few years ago when we were looking for responsible healthcare plans that really understood the real needs of people with cancer, and we met a real friend when we met Randy. So welcome, Randy.
DR. RANDY AXELROD: Good evening. This is a most difficult topic for anybody to stand up and talk about. And, certainly, the old George Gobel joke is, have you ever felt like a pair of brown shoes in a world of tuxedos. And, frankly, the payer perspective has a very unusual point. And that is, clearly palliative care works. It's something that we all want to have as part of the normal care continuum for cancer patients. But, unfortunately, we continue to see within our information disturbing facts. Clearly, the risk of cancer and a lifetime risk of cancer continue to rise.
Ellen and her buddy, Stacia Grosso, a friend of mine, long ago showed me the numbers with regards to cancer survivors and the doubling effect year after year in terms of what we are likely to see. But the real issue is that despite all that and despite all the care, from the payer's perspective, we are actually seeing less and less palliative care delivered as a percentage of the cost for cancer.
And, in fact, if we look at statistically within Virginia the average use of a hospice program, unfortunately, that number is less than seven days per patient. That's really not where we would like to see this type of piece work or move to. Clearly, physicians at Massey and what's happened at VCU is, without question, a jewel — not just to Virginia but to the United States and should serve as a model. We are just absolutely as lucky as could be that it's sitting within Richmond, Virginia, as opposed to Anchorage, Alaska, where people in Virginia would have very little access to it.
That said, there is no question that every payer, every commercial payer, is looking to expand its use, being both palliative care and hospice care. But the question is, how do you get that to occur. Because there is, quite frankly, an elephant in the room. And that elephant is palliative care sometimes means throttling back with regards to aggressive treatment with chemotherapy or radiation therapy. It means common sense medicine, and it means caring for that patient as a whole, as opposed to just that tumor or just that cell.
I will tell you that I wish — well, I guess it's been now — almost 30 years since my father died of cancer at the unfortunate age of 50. And I remember that his palliative care was delivered by two people in our family room in a hospital bed, and that would be my sister and my mother, as opposed to being able to have access to the fine institution that we have here at Massey.
So, in summary, we know it's the right thing. We have to figure out how to move an industry geared around never giving up, if you will, into that this isn't giving up. That this is, in effect, just moving to another phase of a treatment. And I hope that the payers, both commercial and Medicare, will seek to understand that and move with centers like the Massey Cancer Center toward the best financial arrangement and the best outcomes for the family and the individual. Thank you.
MS. ELLEN STOVALL: Thank you. Our next to last speaker has a long history of working with people diagnosed with life limiting illnesses. Dr. Sherman Baker is Medical Director of Hematology/Oncology Clinics at VCU's Massey Cancer Center. He specializes in caring for patients with very difficult to treat cancers, chest malignancies, brain tumors, head and neck cancers and attends on the hematology/oncology inpatient and consulting units at Massey and at VCU's Thomas Palliative Care Unit. Dr. Baker, welcome.
DR. SHERMAN BAKER: Good evening. While I was thinking about this talk a week or so ago, I was thinking about tools. We always think about what are the tools that we have to treat patients with cancer. We think of radiation, we think about chemotherapy, we think about pain medications, and we think about palliative care.
Something struck me a day or so ago after sitting down and talking to one of my patients that I will tell you a little bit about in a minute, and that was teams. Tools and teams. Because what we are doing, as Tom and Gordon and Dr. Axelrod have talked about so aptly, is that we are creating an environment so that patients get the care that they need in a way that helps them.
Teams. We think of hospital teams, multidisciplinary teams. We talk about the nurses, support staff and secretaries. But the other team members include people like the family members, home health and hospice, also visiting nurses. Before there was hospice in one of the places that I practiced, all we had was the visiting nurses. So what the visiting nurses and I would do, would be visit patients. And I'd do home visits; we would talk about the care, and we would just move on from there. And eventually we moved from having just visiting nurses to a hospice care in our area and also a free-standing hospice unit.
But I want to tell you about a 60-year-old that I met about a year ago. He had some hoarseness. It was worked up and eventually went to surgery, and he found that he had a locally advanced non-small cell lung cancer. Of interest, his father died of cancer about 12 years previous, so he had some information about it. We continued treatment to the end of the year. He had some side effects; he was sort of feeling okay, but there are some persistent things that are still bothering him.
And at the end of treatment, he said, "What are we going to do next?" And we talked about follow-up care. And he said one day when his wife was there, "Well, Doc, how am I going to die? What are my choices? What are my options?" And so we talked then about the inpatient palliative care unit, and we talked about hospice at home. And this was at the beginning of this year.
Next six months, seven months, nothing exciting happened. Got a little back pain. We found that he had a little bit of involvement or spread of his disease to his back, called the Department of Radiation therapist, took care of him, treated him for five days, pain went away. He went traveling with his boys and his wife, and they are off sailing and at the beach.
And he came back to me last Friday and said, "Okay. I'd like more therapy if you can tell me that it will help me survive." And I asked him what survive means. He said, "Well, I need quality of life. I need to be able to do the things that I want to do." So we talked about this for a while. And what we finally came to was he wants therapy that will help whatever symptom hurts him at the time, or bothers him. And sometimes that might be chemotherapy, but more likely, as they go out and interview hospice, it will be hospice care at home. Right now he is at a beach, if it isn't washed out, and I will see him in late October.
But the team is bigger than the buildings and the bricks and the mortar. The team is also the family. The tools include the things that we use day in and day out, but they also include our ears, listening, talking, and at the end being able to say to patients, I got the care that I needed in a way that helped me. Thank you very much.
MS. ELLEN STOVALL: Thank you, Dr. Baker. Our last speaker this evening is a very, very dear friend to patients everywhere, I would say. Dr. Julia Rowland is one of the first people I actually met when I was beginning my advocacy work with the National Coalition for Cancer Survivorship. She was one of the early members of the board of directors, and she is probably best known in the community for all the extraordinary writing, teaching and research that she has done in the behavioral sciences and is the co-author along with Dr. Jimmie Holland of the penultimate tome on psycho-oncology, which is integrating psychosocial practice into oncology practice.
She comes to us tonight in a very distinguished role, and that is representing the National Cancer Institute. For those of you who don't know, the National Cancer Institute is the largest institute of the National Institutes of Health, and has the lion's share of the budget. And the only part of the Institute that does not have quite as much of the budget as I'd like to see is the Office of Cancer Survivorship, which Julia is the director of, I'm very proud to say.
She has been active as a clinician, researcher and teacher in the area of psychosocial aspects of cancer for close to three decades, even though you won't believe she is over 20. Trained as a developmental psychologist, she has worked with both pediatric and adult cancer survivors and their family members and written extensively about women's reactions to breast cancer, as well as on the role of coping, social support and developmental stage in the patient's adaptation to cancer. It is my real joy and pleasure to introduce Dr. Julia Rowland.
DR. JULIA ROWLAND: Thank you, Ellen, for that, as ever, very gracious introduction. And, Ellen, I love you. It's a long-standing exchange between us that you will appreciate in a moment when I tell you a little bit about the history of the office.
But I want to begin by thanking the National Coalition for Cancer Survivorship for holding this forum this evening and for inviting me to come and be a very part of that. Because I think it is a mission that they have had since the founding of the Coalition back in 1986, is to get the word out to people. So I am grateful to NCCS and our hosts at the Massey Cancer Center and the pioneering Thomas Palliative Care Unit, which we had an opportunity to visit this afternoon. It's just extraordinary, and it's very exciting to see it grow and evolve over time. And also to VCU for providing us this beautiful setting in which to hold our event this evening.
And if you want to know who survivors are, you are all survivors. You survived [tropical storm] Gaston and you are here. Thank you very much for being here, and we have gotten free of [hurricane] Jeanne. So we are all grateful to be here all tacked into one piece. And I am very privileged to be here as a representative of the National Cancer Institute. In February of 2002, an historic event occurred in Washington, D.C. A cancer survivor was sworn in for the first time as director of the world's premier cancer enterprise, the National Cancer Institute. Dr. von Eschenbach, our current director of the NCI, is a three-time cancer survivor. He gets it. He knows what it's like, not just as a physician or a researcher, but as a family member of someone who watched his father die of cancer and who is himself a survivor and understands what it's like to have somebody tell you, "You have cancer," knowing very well what those words mean and convey.
We are also very fortunate that he came to the Institute at the time he did, because he came to groundwork that had been laid for him, ready to help him champion and support his vision of eliminating the suffering due to cancer by the year 2015.
And the reason we were poised to do that is because back in 1995, Ellen Stovall took a white paper that many of us had contributed to, that was put together under the auspices of the National Coalition for Cancer Survivorship that documented what were the concerns of people who are living now long-term, some lifetime, some many months, many years after their diagnosis, carrying this history.
What a wonderful testament that there are so many out here! 9.8 million in this country alone who carry that history. But what was their life like? What was it like to be a survivor, if you like. Many of us got down and thought: What are the problems there? What is it going to take to answer them? What are the resources we need? And that document was put in a white paper that Ellen Stovall then delivered to the then Director of the Cancer Institute, Richard Klausner, who read it on a trip to Israel. He came back, took one look at this, picked up the phone and he said to Ellen, "We need an Office of Cancer Survivorship." And that [in 1996] was the birth of the office that I have the privilege now to direct. The mission of the office is to improve not just the length but the quality of life of all of those diagnosed with cancer and for their family members. What the office creation did at the NCI was create a focus and a home for supporting and guarding and developing research that would provide us with those answers. To answer the question of: What's it like to live long term? What are the life consequences? What are the chronic illness issues that people have?
Because what we have learned from survivors is being free of cancer or at least disease-free does not mean being free of the disease. Psychological sequelae, emotional, physical, functional difficulties that come up. The fatigue that persists. The things I can't remember anymore. Sexual dysfunction. Being able to relate to my family. Can I go back to work? Will I have a job? Can I get insurance? And what does this all mean?
We need to have the answers to that, and that's one of the things that the Office of Cancer Survivorship is really committed to trying to answer for us. But it will serve us little if we can't take that research and science and what we are finding about all of that and deliver it back to the community. And that's why it is so critical to have these kinds of Town Hall gatherings so that we can come here and say, "This is what we are doing. Is it getting to you? And if it isn't, why aren't we delivering it and where do we need to be going with that and how can we enlist your involvement in this activity and in this vision?"
And in closing, I wanted to share with you a quote from a volume that was written by Natalie Davis Spingarn. Now Natalie was actually one of the original founders of the National Coalition for Cancer Survivorship — a journalist, an investigative reporter, feisty, thoughtful. Who, when she was diagnosed in the late 1970s with her metastatic breast cancer, decided to become an expert in that arena and researched everything she could about her illness. And as she lived beyond the limits that she thought she was going to have in that life, she wrote about her experience.
And then, as she lived even longer and became a passionate advocate for cancer rights, for the Coalition, for information and dialogue patient-to-doctor, back-and-forth, she decided she needed to go back and revisit that first volume. Because, in fact, what was happening is we had a new generation, if you like, of survivors. So she went and wrote a follow-up book called The New Cancer Survivors. And in it she describes those individuals as "The new population of survivors hanging in there can be found everywhere — in offices and factories, on bicycles and cruise ships, on tennis courts . . . and beaches and in bowling alleys. You see them in all ages, shapes, sizes and colors, usually unremarkable in their appearance, sometimes remarkable for the way they learned to live with disabilities." Thank you.
MS. ELLEN STOVALL: Thank you so much, Julia. Well, this is the part of the evening that, hopefully, everyone will feel a part of. And I'm going to ask the speakers to join me back up here on the dais. And when they are doing that, like I said, it's your turn to direct the conversation back to us and with us. And we hope you will do that. And for the next 45 minutes or so, or longer if you choose, we are going to open the floor to questions. You have two choices, as we said, in how you want to present your questions. You can write them on the card that's in your packets at this time and give them to the ushers who will gather them and bring them up, or you can ask a question directly. And we've got folks — Andrea is over there, I see, with a microphone, so don't be shy, please. You can see that we are not, so we really invite you to have a dialogue with us, because it's this part of the evening that is going to give us at NCCS the stories to go back to Washington with to impress upon our legislators how important it is for us to make sure that you have this continuity of care, that everyone in the country who would like to access this kind of care could have it. So who is going to be first? Cathy is going to facilitate it for us.
Q: (Catherine Harvey) Please don't be shy. But if it takes you a minute to think of a question, I have several.
I want to address this one specifically to Dr. Smith, but I am interested in hearing anyone else who wants to take a shot at it as well.
One of the things that we talk about is a gap between where we are today and where we would like to be, and we talk about education being a part of that. What do you see happening in medical education and in nursing education that is going to help us move the field beyond where it is right now?
A: (Tom Smith) I can answer for myself. Back when I went to medical school, everything was taught in Latin. It was just earth, air, fire and water, I think. In medical school, residency, first couple years of fellowship, I got absolutely no training about taking care of people who might actually die. We just — we thought they were noncompliant when they didn't show up for their appointments.
There was one person in my fellowship training, Dr. Gaylen Wampler, who was the quietest oncologist I think I have ever met, but who had taken it upon himself to know how to prescribe long-acting opioids. He taught me how to use this drug called methadone, which was really stigmatized back then for being a drug of addiction but is a wonderful, very inexpensive and very effective pain reliever, often helping with nerve pain when nothing else does. I think we do a heck of a lot better now. That was a long time ago, but not all that long ago.
All our medical students, all our nursing students, all our pharmacy students are just besieged by information about how to prescribe the right medicines, how to have conversations where you break bad news, how to be honest and open with people, how to run a meeting. And, granted, not all of them get it. We probably have a certain percentage who will never have the interpersonal skills to do that. But most do. Most medical and nursing students really start from a basis of wanting to provide the very best care they can and be as humanistic as they can, be as good listeners. Most everybody has been touched by cancer or some serious illness in their family one way or another.
Interns and residents get lots of exposure. We have a fair number of people that rotate through our program on electives where they learn how to provide pain medicines. All our fellows are required to do a month or two on palliative care. Pat Coyne, who I mentioned before, is really a big presence throughout the hospital, and people come to him with all sorts of pain questions all the time. So the new generation really, really gets it.
Q: (Catherine Harvey) So is part of your answer that we just need to get rid of all of us baby boomers and we'll do it better next time through?
A: (Tom Smith) I’d like to take this opportunity to announce my retirement. No, there are a lot of people like me who are and still able to be practicing for a while. It is more difficult to change practicing oncologists' thinking and behavior. We have been trying to think of ways to train practicing oncologists to do this better for quite a while. [The person] who runs our continuing education office, will tell you that regular continuing medical education doesn't do it. Just going to a lecture doesn't do it. Just having a set of guidelines doesn't do it. It has to be a perceived need coming from the patients. Patients should demand that their pain is relieved, that their depression is relieved, that they have control of their symptoms. Patients should know what's going to happen to them. The patient demand will fix it. If you teach physicians how to do this in a quick, easy and simple way and make it easier to do the right thing than to do the wrong thing, then most of us will prescribe the right medicines, sit down and have those conversations and do a better job of palliative care.
That said, it's still tough to get most of us to do this because it is a difficult area. We were discussing earlier today. A friend of some of ours put a video camera in the entry way to the Washington, D.C., hospital. He recorded how long people spent with the patient each day. And these were seriously ill patients, people who were likely to die within the next six months. And the average time, as recorded by video camera, of the doctor going in the room to the doctor leaving the room was?
Q: (Audience member) One minute?
A: (Tom Smith) One minute? My dear, you are more cynical than I am. It was about three minutes. The average physician spends about three minutes in the room. You got to change that. You got to make it so the physician feels obligated to, gets reimbursed for, and gets rewarded for going in, pulling up a chair, sitting down, saying, "How are you Mrs. Jones?" and then shutting up.
MS. CATHERINE HARVEY: Dr. Rowland?
A: (Julia Rowland) I just want to follow up on two points that Tom made, and that is about the old-dogs-and-new-tricks, and also a model for doing this from the ground floor up. I have an example of that.
Before I took the role that I hold now at the NCI, I worked at Georgetown in the Lombardi Cancer Center. And about the second year I was there, we had a group of medical students. We did an introduction to the patient course where we went around and we worked with incoming medical students on how to talk to patients. Not take a medical history, just talk to the patients. And a group of those students came to us and said, "You know, we want to come and do something at the cancer center. We want to go and talk to some patients at the cancer center." So we thought about that. We said, “Okay, we're going to set this up as a model program.”
So we took 16 of these students, and we paired them up with patients whom we were seeing in the course of care at the center. And the patients were told, if they were willing to participate, that you were the teacher, that you were going to be the guide to these medical students who knew nothing, who hadn't crossed the white-coat barrier yet, who were still human, how to relate to people. And the job of the student was just to find out what it was like to have this diagnosis for that individual in that person's life.
And then on Fridays, we had pizza — you always have to feed the students, that’s how they learn. And then we asked them, “We'd like you to come in and talk about the practice. What was it like to deliver care in the setting? Giving bad diagnoses, working with families, paying for this, figuring out how you're going to get money for it?”
And the program was such a raving success — wasn't any credit; it was an elective that you took. We wrote a letter that went into the records of the students who took it. It became a competitive class because the students loved it. They got to find out what it was like. They would come back to us and say, "We had to wait in the radiation clinic." And I’d say, "We?" Hmm.
And they got to understand what it was like to be a person who had an illness — not an illness, not the colon in room six, not the breast in room five, not the prostate in room ten, but John Smith, Elena Suarez, et cetera. You got to know who that person was.
And I think that is the kind of way that we are working now with students that's very different than when we were reading Greek and Latin.
MS. CATHERINE HARVEY: Dr. Ginder?
A: (Gordon Ginder) I might just have a couple of comments to reinforce what Tom said, and the issue of better training and better education of our students, residents. I think that's the bright future for better palliative care.
But what do you do with those of us who are sort of old and recalcitrant? I think you have to have a push and a pull, as Tom said. And the push is I think patients have to feel they have every right to expect and demand the time of their physician to listen to them and understand what their real symptoms are and what really bothers them and not feel that the physician is too busy. That's our job as physicians.
And the pull, of course, has to be at some level a physician has to get some payment for this or they get thrown out of their HMO or they get thrown out of their organization.
But for the people in the audience who are more likely to be patients than payers, you have to feel you have every right to expect your physician to listen to you.
Q: (Audience member) Thank you very much. It was a wonderful presentation and very informative. Thank you for that. I have a question with regards to politics and monies regarding this. It was very disturbing for me to lose my dad, and find out that insurance didn't cover custodial care — is what they were calling it. And there were great needs, and it came out of that team that you referred to. And it was a good team; it had a nurse onboard and what have you. But I'm really interested to see that quality of care gets recognized as another stage, you know. And how is that being received in Washington as being valid?
A: (Ellen Stovall) Well, you have asked the $64 million dollar question. I made reference earlier to the fact that what we value, at least in terms of our current reimbursement system, which is really led by the biggest payer of healthcare, which is Medicare. Whatever Medicare does, people like Randy and others in private health insurance plans tend to follow. So whenever we are trying to change policy about healthcare, we focus on Medicare for that reason. And we also focus, just as an aside, on large purchasers of healthcare like General Motors or General Electric or people who contract out to healthcare plans, so that we can get a quality standard that is a threshold.
Because we are, and I would ask Randy and anybody else on the panel to correct me, we are basically held pretty much captive by a payment system that rewards procedure-based medicine. Meaning that if there is a physician work component attached to the procedure, giving chemotherapy, doing surgery, et cetera, there is a payment and a fee schedule attached to that, and that [payment] is at a much higher level than the kind of care we are talking about here tonight.
The kind of care we are talking about, that supports the patient, the family, provides good symptom control and symptom management but isn't out to “cure anybody's illness” with procedures is, we believe, very underpaid and undervalued by this reimbursement system, [a system] that is pretty much directed and set by the American Medical Association and a value system created by their team of people that does that kind of thing.
A: (Randy Axelrod) I think you said it pretty well, that Medicare tends to be the leader from a policy standpoint. There are instances in which commercial payers tend to either step up in front of something or lag a little bit behind. Some of that is good and some of it is not, quite frankly. At times you almost think that the commercial payers in unison are waiting for a mandate so that nobody is, quote, put at a disadvantage, if you will.
Because when it's all said and done, insurance is a pooled mathematical equation, quite frankly. And it has a benefit design with a very carefully calculated cost component to it. And as you expand that and you don't necessarily know what the repercussions are, and you are the first to expand it, usually bad things happen from a financial standpoint. But that's sort of a sour and gray way to look at things.
So what people have tried to do — at least the folks at Anthem have tried to do — is support programs like the Massey Cancer Center, not necessarily in a contractual way but in other ways — whether it's through a program, whether it's through a tennis tournament [fundraiser] — but something to show that, indeed, we believe that this is a very important component to a community's cancer care delivery, as we almost wait somewhat impatiently for the development of a more global strategy, frankly, by Medicare.
The vast majority of commercial payers tends to be people under 65 as opposed to those over 65. And I think from the standpoint if you were to look at the total cancer dollar spent, the rate of cancer expenditures is probably going up three to four times the general medical inflation for healthcare inflation altogether. And as Ellen pointed out, it's because it is procedurally driven, mostly around chemotherapy, some the very unique drugs, whether it be the Avastins of the world or other drugs that are very unique and potentially life saving. But it becomes that type of an equation as opposed to being able to sit back and say, “What does comprehensive palliative care deliver, both from a humanistic, clinical and financial aspect.” Does that answer your question?
Q: (Audience member) Yes. And when you say mandate, what would that look like?
A: (Randy Axelrod) A mandate can look like a couple of things. If Medicare were to move forward specifically in a coverage policy, that would be a very strong statement to all payers — Medicare, Medicaid, and commercial payers.
The other is some of the things that we see at a state legislative basis, “You will cover this.” And I'm not proposing that Virginia pass a law because, last I checked, we have the most laws of anybody in the state of any state. I think Maryland and Virginia are running neck and neck. It's interesting what district they tend to surround.
But I think that's what a mandate typically looks like. I think that there has to be a critical mass of interest, not necessarily of people, but of interest, that drives those kinds of changes.
I have a very good friend who […] taught me something incredibly important. He said, you have to keep believing. You can't push, but you have to just keep leaning on it and eventually it will fall.
And I would say that's what you need to do. You need to keep leaning on the process, and that means from a couple of different directions and a couple of different perspectives. And I think that when you see that, you will start to see some ready adoption.
A: (Ellen Stovall) Write a letter. That's really powerful. One letter from one constituent. Bob Hall, who is NCCS's Director of Government Relations, spent several years on the Hill with Senator Dayton. And I think he would tell you that one letter from a constituent, well-written and heartfelt, is pretty powerful.
A: (Tom Smith) Just a comment about how expensive oncology care has become, you mentioned some of the new drugs that work, like Avastin. Avastin is something that keeps blood vessels from growing in, and it does help chemotherapy work. It makes people live several months longer. But each dose can be $4,000. One of the drugs that Gordon [Ginder] gives for leukemias or lymphomas is something called Zevalin. It's a radioactive material, and it's $22,000 every shot. You hope you don't drop the vial. Whoops.
If we are going to be able to afford any of that without spending all of our money on healthcare — about 15 percent of the GNP right now — if we're going to be able to afford all those new things, we have to find ways to cut costs someplace. One of the good things about palliative care is that it actually saves money.
We have just been looking at our symptoms in the palliative care program, and University Hospital Consortium just did a survey of symptoms in regular hospitals. And if you look at the number of people who have shortness of breath — a common symptom in 70 percent of people — how many people get asked about it when they come in. Of about 85 percent of those who have it, how many is it better in 48 hours? Well, it's not better in very many. In our program, when you ask about the symptom and then fix it using simple and easy ways, almost everybody's shortness of breath is cut in half by 48 hours or 72 hours.
So we can relieve symptoms. And when we looked at the care, the care was better. But the cost for being in our unit is about half the cost in the rest of the hospital. Pick up a copy of the Wall Street Journal article there from March — not because my little picture is in it; nobody who knows me ever thought that I would be on the front page of the Wall Street Journal without the word "indictment" somewhere there — pick that up, and it goes through that [palliative care] is good care and it's less expensive care. So it can concentrate the money spent on helping people, and that frees up some money for doing something else.
Q: (Audience member) I am Greg Cooper with Hospice Community Care. I would also like to follow up a bit on the public policy. I think I hear you saying that you're talking about the current funding vehicle of Medicare not providing enough money to provide the palliative care that would be good and wholesome and healthy. I am curious about the Medicare Modernization Drug Improvement Act of 2003 and what impact might that have as that becomes implemented in the management, managed care aspect of that.
A: (Randy Axelrod) My initial reaction is not much. And that's unless a good deal of the therapy moves to the outpatient oral administration arena. Because the Modernization Act on the Part B component is really more geared toward that, as opposed to infusion therapy right now.
Now that could also change tomorrow or next week or January, if there is a new president. It's a very fluid, and not terribly well-detailed piece in terms of what's being laid out. But I would say that that will probably have very little effect in and of itself.
I think that the idea of trying to have measured response to a particular cancer by every patient, as Tom talked about, is really the only way to create the pool of monies that we want for appropriate palliative care. And what that means is really retooling both the process of reimbursement that we have today, which is being done somewhat — that's the ASP process that's occurring. But I think it also is a retooling at the same time of what's acceptable to an individual physician. These two are, you know, truly tuxedos in the world.
This is extraordinary because there is the notion, that the general practicing oncologist will never give up, and that giving up is palliative care. And that's — I think that's why we see 7-day hospice, like this state, when in effect there is a six-month benefit sitting there. There aren't very many benefits that go as unused as that particular piece.
So short answer, I don't think much. But to the extent that ASP, which is a new mechanism in terms of crisis drugs, saves total dollars, I think that's already being spent and accounted for elsewhere. And I'm not sure it will be a contributor to improving palliative care.
Q: (Audience member) In the context of palliative care, to what extent are opioids still underprescribed and to what extent do you think the DEA is the main bogeyman in that? And if the DEA is, wouldn't one want to apply pressure or educate the DEA as part of this — as part of the way to increase palliative care throughout the country? And, lastly, since you brought up Methadone, why isn't that used more? Because it does seem to me that it would be really a wonder drug in a lot of respects.
A: (Sherman Baker) Let me talk about that a little bit. Because over the last 20 years I can remember being a medical student or resident and hearing about morphine and, if I recall, something else that the patients would actually take, or Methadone and saying this is good because it's long acting, you only have to take it a couple of times a day.
And I remember when the top prescribed drug for pain medication was actually Tylenol No. 3, and Percocet was that really strong medicine you went to, and almost nobody used morphine.
Probably 13 years ago, 14 years ago, there began to be a cancer pain initiative that included booklets and books and education and more booklets and books and articles about cancer pain. And that began to change how people perceived that you can actually give enough medicine to actually do good, and not kill the patient or they would forget to breathe.
And as we teach more medical students and interns and residents that if the patient is awake in pain, you can give them more, nothing bad is going to happen. And the more that you tell patients that the major side effects that you get from getting pain medications are that you might get drowsy and you might get constipated — and we can do something about the constipation — then people begin to take enough.
It also means that you have to ask them about it when you see them, "Is your pain controlled? Are you taking enough? And if you are not taking enough, why?" And when you get to the “why aren't you taking enough” and solve it, you can move forward.
The DEA, having practiced in a couple of states, is really not the bogeyman with relationship to the prescribing of meds, particularly narcotics; it’s probably doctors. And we don't want to, and sometimes we give pain medicines for convenience. The rules are that you should document why you are giving it, how much you're giving it and then re-evaluate to see whether it worked.
And if you do have cancer pain, back pain or any other type of pain, the DEA doesn't care. If they come and look at your records or they talk to your patients or they see you, they see a good physician taking care of their patients and that both the patients and the physicians know what's going on. So it's not a barrier; it's a matter of following the rules, taking really good care of your patients if you ask them, “Is your pain controlled?” And if it's not, then doing something about it and then re-evaluate it again, and documentation just saves you.
Q: (Audience member) It's interesting to me as a psychologist that we talk about treating a patient holistically from a psychosocial perspective, but no one has really mentioned psychosocial interventions or how we value psychological interventions within cancer care. We usually focus on pain control and the use of medication. So maybe you can speak to that, reimbursement issues and research and things like that.
A: (Julia Rowland) That's the research part. That's one reason why the [Office of Cancer Survivorship] exists. We have a huge portfolio of research looking at psychosocial interventions and their advocacy at the center. About 40 percent of the portfolio our office holds in post treatments — just in post treatments, not including active treatment or end-of-life — is in the interventional region, and many of those are psychosocial behavioral interventions, non-pharmacological interventions. So this is a fast-moving science, a lot of people investing in it and a lot more sensitization to that science since I started in this field, that includes psychotherapy, and studies that say if you do this, what are we changing that might account for improved — not just sense of well-being, but alteration in the clinical course of cancer. So we are moving fast there.
The second part of your question, though, about reimbursement for this I might turn back to Randy. This is a major hurdle for many patients. To get mental health visits, you often have to receive a mental health diagnosis, which will be a further stigma to you in your medical record. And so a lot of people won't do that because of that kind of fear of stigmatization.
The same kind of problems that you see with pain medication. Patients have a sense from the general community they should be able to cope with this. So if they're having difficulty coping with it, there is that sense of I'm a failure somehow, so they don't avail themselves of those services. And then they are not referred because physicians either may not ask about it or they feel there are resources in their back yard if they do ask about it and there is nothing they can do or may also not want to stigmatize the patient by labeling him or her, have patients come back and say, “First you tell me I have cancer, now you're telling me I'm crazy.” That's not the message that we are trying to communicate.
So finding ways to build that into the care is a challenge, and is something we are struggling with and certainly the Coalition has been very aggressive about.
And I want to make, since I have the mike for a moment, just one other point. One of the things the Coalition did when it was founded in 1986 that changed the definition of survivor: Up until then the definition of a survivor was the medical definition. And to earn that title, if you like, you had to be five years disease free. The problem with that is, as far as the Coalition is concerned, it meant that you were kind of ignored until you made that five-year mark. I mean, you were — either you were going to be cured or not, but if you weren't going to be cured, I don't care about you.
So what they did was this very radical notion at the time. They said, “Okay, we’re going to redefine as a survivor anyone from the moment of diagnosis and for the balance of his or her life. Because if we do that, then symptom management is something you have to be focused on from day one.” It isn't what you do at the end of life. It isn't even the classic definition of palliative care, which we have also now broadened. It encompasses all of those things, the nausea, the vomiting, the hair loss, very active treatment, the fatigue, the sexual dysfunction, the word problems. After treatment, the dyspnea, the pain symptoms, deliria at the end of life, all of that is now under that larger rubric, and the philosophy being you start doing this from day one. It doesn't become something you forget to do at the end of life. And I think that has been a very, very important message, that “leaning” process that Randy talks. Just keep leaning.
And changing the language is important, and we know that. And another classic example is patients don't fail, their treatments don't work. The patient didn't fail, the treatments don't work. And just that subtle enough shift to move that away from having to have that dialogue is so important and just changing the way people interact and feel about this and what we can do about addressing the problem.
A: (Randy Axelrod) Just quickly on the payment side, to the best of my knowledge, and at least at Anthem in the southeast [region of the U.S.], any psychiatric or psychological support in the realm of a cancer patient is a covered benefit. Yes, you have to get a behavioral health referral and that by itself is, unfortunately, an obstacle for a lot of people because of what it means or what it says. But there has virtually not been any denial of services from that standpoint.
A: (Tom Smith) From the practicing physician standpoint, I believe I can say this is one of those times when you are on this side of the microphone and the person asking the question knows a lot more about it than you will ever. Dr. Pamela Goodwin who did her PhD work on patient-physician communication — I have been carrying around your printed dissertation all day — so welcome.
There are lots of opportunities for helping people, whether it's at the end of life or throughout their illness trajectory. We have not had a great experience with getting reimbursement for these things or convincing our psychiatry group or psychology group that you can actually get reimbursed for these things. We have explored this over the years and tried to set up programs. And although Anthem may be really good about it, most insurers are not. You have to have a psychiatric diagnosis and then you have to go back to your primary care referral, primary care doctor, and get a referral for six visits or ten visits, and you have to have a psychiatric diagnosis there, and that takes two weeks or so. And by that time, everything is done.
And the young people that I see with breast cancer aren't crazy; they are not schizophrenic, they are not delusional, they are not delirious. What they are is 37, two kids 7 and 9, worried about what's going to happen to them, changes in their entire world view. If you think of the losses that somebody has when they are told they have breast cancer — certainly loss of innocence — you have to face your own mortality square on at a time when you shouldn't have to. Oftentimes loss from work, your whole role in the family may change, you may lose a part of your sexual image, you may lose a lot of sexual feelings, you may have some chemo brain and lose some of your cognitive ability, certainly in the short term. Fatigue. The list gets bigger and bigger and bigger. It's amazing that people get through this at all.
But you are not schizophrenic, you're not even depressed. Most people aren't. They're pissed, but they are not depressed. And unless you had one of those diagnoses, our psychiatrists couldn't get paid for it and they weren't interested in going to battle every single time with every single insurer to do this.
Q: (Ellen Stovall) Dr. Smith, do you think we could get the AMA to put a new code in that's called Pissed? It would have to be capitalized. [general laughter and comments]
A: (Tom Smith) Well, Jimmie Holland has really piloted something called the distress thermometer. That it doesn't matter what you are distressed about. If you are distressed, you need help, and I think that's what Pamela Goodwin showed in her trial of supportive and expressive therapy for breast cancer patients.
Most people get by okay, and having a lot of psychosocial help isn't necessary for most people, nor does it help them. But about 20 to 25 percent of people are really profoundly distressed by this whole experience, and that's the group where you really would love to be able to get them intervention early, lots of visits right up front. Not only help with "I'm distressed, I'm having hot flashes, I feel miserable, I'm fatigued. What do I tell my 5-year old? What do I tell my 7-year-old? What do I tell my employer?" Lots of practical stuff as well as psychological and psychiatric stuff too.
In fact, we have actually moved away from the traditional goal of having psychiatrists and psychologists do this and having a psychosocial nurse counselor, because is very practical. She is expert at listening, expert at helping people get through the next day, get through the next week, get through the next month.
Now who pays for that? Gordon [Ginder] pays for that. Thanks, Dad. It's our practice that pays for that. Peter Eisenberg's practice in Marin County has a psychologist that they pay for out of their own practice. It means we all reduce our own salaries to do it. And it's well worth it. I think any practice that's hired somebody like that has found your patients are happier, you can do more time being an oncologist if you are an oncologist, because you are spending less time picking up the pieces of people's lives. Do you have suggestions?
A: (Randy Axelrod) Not completely anecdotal, but I was looking at this actually this afternoon in a subpopulation of 250,000 members across the state of Virginia, so a pretty good sampling. And I was just curious again at the effect of clinically diagnosed depression on any disease, and I happened to flash up breast cancer with and without depression. And it was, not very well severity-adjusted or stage-adjusted, and the average age of the two populations were similar. And we are talking hundreds of thousands in terms of people that were in both populations.
But interestingly enough, those with depression and breast cancer had four times the number of ER visits and four times the number of inpatient days as those without. And the oncological costs were virtually identical. But outside of that, there was clearly something not being terribly well addressed, and so that their total costs were considerably higher. I can't remember if it was 50 percent or 60 percent more. But over and over, the overlay of depression with devastating chronic disease of any kind, let alone one of cancer, really is an extraordinary co-morbid with those conditions.
Q: (Ellen Stovall) So, Randy, you have now raised the question, given those figures. You add the question of acute anxiety on top of illness, and if you go untreated, you increase medical care costs, we know that. So what would it take to change the system to alleviate that?
A: (Randy Axelrod) Again, I'm going to talk about Anthem Southeast because I think we have a better model than the average payer. Behavioral Health is not a carve-out. Behavioral Health reports to me, just like Pharmacy does or any other clinical component of healthcare delivery. Too often today we see "that's a carve-out" which automatically creates confusion, problems in terms of how to get a patient from point A to point B within that system.
And that's problematic, and I think it shouldn't be a carved-out capacity of any kind. It should be carved in, and it needs to be an integral part. And, unfortunately, that's not the case with the vast majority of partial payers.
Q: (Audience member) Thank you for a wonderful panel discussion. I'm with Noah's Children Pediatric Hospice. What are the unique issues that need to be talked about when we are talking about children and palliative care?
A: (Tom Smith) We have just been working with a group at VCU Health Systems Massey Cancer Center to design a comprehensive pediatric palliative care program. And I think the first thing is just to acknowledge how terribly stressful it is on all the caregivers involved in taking care of a young child who is dying. And I might ask Jo Laird to speak as our nurse manager on our floor just about we don't normally take kids, but we take the occasional adolescent. And I think it has been difficult for people. Jo, do you have any thoughts?
A: (Jo Laird) I would just say that it is very difficult for the staff. The staff on our unit is accustomed to dealing with adults, but when faced with a specific situation, here's what's out there, they need us. And the answer has always been, we can do this, and we do it. It's done, but it is very difficult, dealing with dying children. There's no question about that.
A: (Tom Smith) The other thing is it's pretty rare, thankfully. There are only 60 new diagnoses of cancer and leukemia in the whole state of Virginia for people under the age of six, under the age of 18. So it's not a common occurrence like it is in medical oncology. We have an 11-bed unit. If we dedicated one pediatric bed, that bed would be, thankfully, empty most of the time. So you have to set up a different model. It's not a continuing presence but, rather, a group of people with specific training who can be activated when the time comes but go and do their other jobs the rest of the time.
The other thing that's different, I think, for kids is we talk about adults wanting to continue to the end. I think it's very difficult for kids to, and for parents, to give up until they have exhausted every possible thing.
And for those of you who aren't aware with how traditional hospice works, at least for the Medicare hospice benefit and for many insurers, you sign out of regular insurance when you go into the hospice benefit. And, let's say, you sign up with Tom Smith's hospice. I get paid $125 a day for every day that you are enrolled in my hospice. And I have to cover all the drugs, all the nursing visits, everything out of that $125 a day. And if you think seven days times $125, and a blood transfusion that costs $550 — you can't do blood transfusions, you can't do any sort of chemotherapy, you can't do radiation therapy, you can't do expensive pump medicines. You really can't do very much for $125 medical-wise these days.
So people in pediatrics tend to stay in the regular model rather than switch over to a model of hospice care.
Q: (Audience member) I read an interesting article not too long ago about what's being done at Duke Medical Center in the area of humor therapy, and I was wondering if we have any similar programs or any programs incorporating humor in healing at Massey? If you can comment on that.
A: (Tom Smith) None.
A: (Catherine Harvey) His name is Tom Smith.
A: (Tom Smith) We don't have humor therapy per se. We have a whole bunch of services that are volunteer services in addition to what's regularly provided. We have a music therapist in the hospital, chaplains who, through the courtesy of the Thomas Foundation, we have a half-time chaplain dedicated just to our unit. We have wonderful psychiatrists available. So that's all through the regular medical part. We have massage therapists who come in and do massage. We have reading therapists who come in. High Anxiety, the pet therapy dog, couldn't make it here tonight. Sandra Barker, Dr. Sandra Barker his handler, said unless there was a dry spot where the dog could relieve itself on the grass, everyone would be very uncomfortable. So we have wonderful pet therapy and we are also doing a research trial to see if pet therapy helps. I think it does.
It turns out if you randomize stock brokers in New York with antihypertensive drugs or antihypertensive drugs with a dog, their blood pressure goes down by 20 more points if you are randomized through the blood pressure plus a dog program.
Q: (Ellen Stovall) But does their portfolio increase?
A: (Tom Smith) Unless there is a spouse involved, in which case the effect is somewhat neutered. But, no, we don't do humor therapy per se. It would be interesting to see whether that actually works or not. Designing those trials is difficult. But before we immediately jump and say, “Well, yes, everybody should have a music therapy program, everybody should have a pet therapy program, everybody should have this program and that program and you should be paid for it, or Dad should pay for it,” we should be critically evaluating them to see if they work or not.
A: (Gordon Ginder) I will second that from the perspective of the Cancer Center director. You know, we want to be open-minded and actually explore all these possibilities. But just the very issue of what is quality of life deserves further research, I think. What one person's quality of life is not the same as another person's quality of life. All these things, I think, are valid questions to ask. Is humor therapy valuable? All that should be asked. I guess Julia Rowland would agree, we need more of this kind of research to answer the question, first of all, how do we define quality of life? Can we do it as a population? We all agree that pain relief is quality. That's clearly one. But when you get much beyond that, or I think we all agree here that depression is an issue of quality of life, but what about the other psychological issues we're talking about?
If we had the research to prove how valid those are, I think it would be a lot easier to get payers, perhaps, to do that. But I think that applies to all, you know, a lot of these issues of quality of life and the modalities you might use to alleviate them.
A: (Julia Rowland) A quick response to that because actually you get FDA support in this, FDA does now say confirm development of a drug that improves quality of life, not just time for —
A: (Gordon Ginder) Right.
A: (Julia Rowland) So I think that statement tells you right there that at least our health-related quality of life management is getting pretty good. And I would have agreed that in the past we weren't very good at measuring symptoms, but we've got some very solid, reliable, reproducible measures that are sensitive specific. Many of them, as I would concur, are looking at symptoms. So the symptom complex is going to be very important. And, obviously, one of the challenges in this field is the fact that, fortunately for all of us, humans are incredibly resilient. If we have learned anything from the survivor community, it's the enormous resilience of people in the face of great adversity and what they are able to accommodate.
So one of the most current challenges in the measurement arena is that people adapt over time. So the disability that you say is just terrible for you today, when I come back and ask you about that three to six months from now, you have accommodated it. Even though your dysfunction, your inability to do the same tasks still exists, your distress about that may have dissipated over time as you have gotten used to it. So it's actually a hard thing to monitor.
What is more interesting and more challenging as we go forward is going to be to say, “As this population of individuals are cured of cancer increases, how is it different being a cancer survivor, someone who has that history versus someone who has another life-threatening illness or no other life-threatening illness?”
The burden on us in terms of not just the research but the financing — what is the additional burden and how can we reduce that? How is it different than other co-morbid conditions? This is going to be a real challenge.
A: (Sherman Baker) I agree with Tom. We don't have a humor therapy program, but if you ever come down and just stand in the hallways, what you will notice is people giving care in ways that is very nice. Patients are greeted, often greeted by their first name, sometimes it's joking, sometimes it's asking how their children are or, “You didn't bring your husband today.” Or, joking, “You were let out free.”
So there's lots of different ways in which care is given, and I would invite anybody to come down and just stand in our hallways for ten or fifteen minutes. And what you will see is things that are not strictly clinical but very nice human interaction that I think benefits the patients.
MS. CATHERINE HARVEY: Ellen, I'm going to make yours the last word.
A: (Ellen Stovall) Before Cathy closes out the evening, I will add my thanks on top of hers on behalf of all of us NCCS.
I am often asked, in a lot of forums in which I speak, “Here's the situation: you have told us all about this over two hours. But what can I as an individual do that really is going to make a difference?”
The first thing is to be an advocate for yourself and people that you love and are close to you. But what you have done tonight is you have become an advocate for others just by showing up here. You are part of a community. You may have met people here tonight or seen people that you don't know. I would encourage you to keep a dialogue going in this community as openly as possible.
In addition, you can become advocates at the national level from right here, and I would encourage each and every one of you to become an activist. You know, you have taken an activist role already by showing up tonight. But I would encourage you to become part of the Cancer Advocacy Now! network. NCCS has begun to hear from people in communities like yours. Let us be in communication with you to let you know what the issues are that we have talked about tonight.
We plan and hope to have a palliative care bill that is really an integrated quality care bill for cancer introduced in Congress sometime next year. We are going to need all the support that we can get from communities across this country to let your legislators know that this is what you want.
So please go to our website, www.canceradvocacy.org and sign up. It's free, doesn't cost anything, and you really can be a part of the voice that's so much needed in Washington to demand this kind of care for everybody. Thank you.
