Minneapolis Town Hall Transcript
Hard Diagnosis, Soft Landings:
New approaches to treating life-limiting illnesses through palliative care
Thursday, October 21, 2004
Hubert H. Humphrey Institute of Public Affairs
University of Minnesota
Minneapolis, Minnesota
Speakers:
Catherine D. Harvey, DrPH, RN
Chair, Board of Directors
National Coalition for Cancer Survivorship
Gordon Alexander, Jr., M.D.
President
Fairview-University Medical Center
Cary Zahrbock, MSW
Former Board Member
National Coalition for Cancer Survivorship
Mark Leenay, MD, MS
Medical Director, Palliative Care and Hospice
Fairview Health Services
MaryAnn Stump, RN
Vice President
Strategic Innovation and the State of Minnesota Health Plan
Blue Cross Blue Shield of Minnesota
Teri E. Kast, MS, RN, AOCN
Program Coordinator, Thoracic Oncology
Fairview-University Medical Center
Ann O'Mara, PhD, MPH, RN, AOCN
Program Director
Community Oncology and Prevention Trials Research Group
National Cancer Institute
National Institutes of Health
DR. CATHERINE HARVEY: Good evening. My name is Catherine Harvey, and I would like to welcome you to our public forum called Hard Diagnosis, Soft Landings. I am the current Chairman of the Board of the National Coalition for Cancer Survivorship and an oncology nurse. It has been a great honor for me to be part of that board, and it is especially important and a wonderful opportunity for us to be here with you tonight, and we want to thank you all for coming.
NCCS, for those of you who do not know who we are, is the oldest survivor-led advocacy organization that advocates on behalf of cancer survivors in the United States. We advocate for patients with all diagnoses, and we try to use our energies and our time to identify issues that we believe are really critical to quality of life for people living with cancer. One of the issues that we have been very focused on during the last several years is the issue of palliative care and symptom management. We think that how people live with cancer from the time of diagnosis through the remainder of their life is a very understudied and underappreciated problem for them. And we want to bring attention to it, not only through legislative action, but through community awareness and understanding of what we might be able to do for cancer patients much better than we are able to do it today.
The purpose of our forum this evening is to hear from you about the needs of survivors in your community, the needs of families. So I ask that after you listen to our speakers that you are not shy, that you speak up, and as you listen to them today, please write your questions down and hold them because we will have an open forum after all of the speakers.
A little bit of housekeeping. I want to acknowledge Fairview Health Services for inviting us here and for also participating in our video that you are going to see shortly. I also want to offer the apologies of Ellen Stovall, who is our president and CEO of the organization. Ellen, many of you know, is a survivor who is very active in this whole area of advocacy. Her doctor would not let her fly because she has an infected sinus, so she sends her regrets, and we will go on without her, unfortunately. I also want to thank Dr. Ann O’Mara from the National Cancer Institute for joining us this evening. She came in from Washington, D.C., especially for the event. I want to thank the Lance Armstrong Foundation who has funded us for this event, and thank them for their support. I want to acknowledge Jim Gelbmann, who is the State Director for Senator Dayton. He is here tonight and he has been very interested and supportive of us as we have addressed survivorship issues. And finally, I want to dedicate tonight’s event. Something that we do on our board is we always dedicate our board meetings to a survivor or to someone who is living with cancer. And tonight I want to dedicate our meeting to Pudge Likes. Pudge, you will see in the film a little bit later, is a survivor, or was a survivor who was treated here in Minneapolis, and he and his family were wonderful participants in the event that brought us here tonight, so this will be in his honor.
Now, I would like to turn the program over to our co-host for the evening, Dr. Gordon Alexander. Many of you will know Dr. Alexander. He is the chief executive officer of the University of Minnesota teaching hospital and has had the wonderful job of helping with one of those mergers that I hear about in most communities where you take people who were formerly competitors and you get them to sing out of the same handbook and work together. But from what I have heard, it has been very successful here, so my congratulations to all of you. Dr. Alexander is a physician by trade and was a practicing OB/GYN until 1994 and in that capacity had a lot of experience in understanding what it is like to see women who are diagnosed with cancer, so he brings not only his knowledge of the system here, but a sensitivity to patient needs. Welcome.
DR. GORDON ALEXANDER: Thank you, Dr. Harvey, and welcome. On behalf of Fairview Health Services I would like to just extend a warm welcome to you all. Fairview does have a very exciting relationship with the University of Minnesota. I am proud to be a leader of the academic teaching hospital. As Dr. Harvey described, the choir is singing very loudly now in total harmony. It never ceases to amaze me, that harmony.
Palliative care is extremely important, not just to me as an individual and to members of my and other leadership teams within Fairview, but to the organization. We take seriously our mission to improve the health of the communities we serve, and we will readily acknowledge that the health industry has not always done the best job of taking care of that either from practicing physician or hospital, and we are committed to making that better. We have done this largely through our Transitions and Life Choices Program and teams at Fairview. We have one at our largest community hospital and one at the academic center, and that is one of the ways they work. They do provide excellent care. Secondly, they are one of the CAPC [Center to Advance Palliative Care] palliative care leadership centers, so they try to improve care in the community. And then lastly, they are really affecting the opinions of the leadership in health care throughout the state thanks to MaryAnn Stump and others. They have hosted 40 teams, including local hospital teams, trying to help us all learn better to deal with this incredibly important problem. Before I go any further, however, we would like to show you a brief video that will help set the stage for the rest of the program. It illustrates exemplary palliative care administered by institutions like Fairview and like the Massey Cancer Center in Richmond, Virginia.
MS. CARY ZAHRBOCK: Now that’s a hard act to follow, isn’t it? So let me tell you, as a three-time, recurrent Hodgkin’s survivor, I am so pleased to be here. And on behalf of NCCS who has given me hope and encouragement and made cancer something that you survive, no matter how long that it is for. From the moment of diagnosis and through the remainder of my life, I am a survivor.
Cancer is such a personal experience, and what NCCS has done is bring the personal story, the voice of the survivor to the national level — to bring the credible voice of the survivor and be a credible resource for people to turn to. One of the things [I appreciated] when I was diagnosed for the first time in 1989, which was only three years after NCCS was formed, was they had already thought [about resources] for me. Now I keep thinking, “Okay, how can I help so that the next time somebody else is diagnosed, they are not going to have to deal with some things that they might have to deal with now?” To bring the voice of the survivor to one another, to have that dialogue, not only with the health professionals who are part of your team, but other survivors [is important to me].
One of the things that you will find as you learn more and more about NCCS, is Essential Care. Essential Care is one of the tools where NCCS has put together all of these pieces that are essential to our care.
In 1995, NCCS hosted the first National Congress on Cancer Quality Care. That’s so cool! 1995, think it’s almost 10 years, and all of this has occurred. When I was diagnosed again 15 years ago, I thought, “I am a clinical social worker [and know the system].” At that time, I was working more in social service agencies. I thought, “Oh, cancer stuff. I bet they’ve got this whole thing down. They’ve been doing this a long time.” [ . . . ] Through my exposure with NCCS, I heard about veterans, and that we help each other learn and to cope with this. [Cancer] is a whole different country, let me tell you. And it is a very strange country, you need some maps.
The Cancer Survival Toolbox® is one of the things that NCCS has also created in coordination and cooperation with oncology social workers and the oncology nursing association. It is a free resource — audiotapes [and CDs] that people can be talking about this and learning about it. Who knew you were supposed to talk to your doctor in a certain way? Who knew what you would do? You get to learn about that. And one of the things I talk about to other survivors who are newly diagnosed is resources, and that you are not in it alone. There is hope. There is no such thing as false hope.
One of the things that NCCS is doing also is Cancer Advocacy Now!™, which is a grassroots cancer advocacy movement to keep getting that voice [to Capitol Hill]. It is the credible voice of the survivor being brought forward. We do not have to do this all on our own. NCCS sees palliative care at the end of life as a continuation of the quality care throughout the continuum of survivorship. I am so pleased that Fairview has hosted this, bringing this to Minnesota. The wonderful care that we have available to us needs to get better. One of the things that, if Ellen was here I know she would say, “In the presence of hope, anything is possible.” Thank you.
DR. CATHERINE HARVEY: Thank you, Cary. Cary was my mentor when I first rotated onto the board at NCCS. She was actually in her second term and she was one of those people who reached out and really helped me to know what NCCS was about, so you’ve got a valuable resource here in your community.
I would now like to turn the program over to Dr. Mark Leenay. You had a chance to see him in the video a few minutes ago. He is the medical director of Transitions and Life Choices here at Fairview. He is also the medical director of the Fairview Hospice. He is chair of the Minnesota Palliative Care Partnership and a clinical assistant professor in the Department of Family Medicine at the University of Minnesota. All that to say that this is what he does every day, this is what he believes in and he is one of those people that we are going to be looking to to help us define what this palliative care movement needs to be and where the gaps are in service so that we can, in the future, make certain that cancer patients and other chronically ill people have their palliative care needs met. Dr. Leenay.
DR. MARK LEENAY: Thank you, Dr. Harvey. Thanks, everyone, for coming tonight. There is a baseball game on (Game 7 of the National League Championship), but anyway. I was asked to talk a little bit about what is palliative care. Palliative care is what I do every day. It’s what I love. It’s what I have passion about. It’s what gives me strength and energy, and I tell people, I am honored to be invited into patients’ stories. I didn’t know Pudge, although my team worked with him because I have a fabulous team that works for me and provides this kind of care day in and day out in different settings. In fact, I have several teams that work with me. But we have, on our team, a social worker, a chaplain, a clinical nurse specialist, a nurse practitioner, and there is another physician who works with me. They are fabulous people and do this work every day.
But the really incredible people are the Pudge Likes of the world who invited us into his story. It wasn’t on the video, but he is actually in the Music Hall of Fame and had an incredible story to tell us about his life, that was just amazing. Cancer patients, they’re not leukemia patients, they’re not cancer survivors. They’re Pudges and Helgas (featured in the palliative care video) and people who have unbelievable stories to tell and share with us.
I was asked to tell you all what palliative care is. Palliative care is about the reduction of suffering. For me, that phrase is key. It speaks to the symptoms that happen to our patients with cancer. It speaks to the suffering that occurs when there are issues between family members around choices that have to be made. It’s around poor information that makes our patients suffer because without good information they cannot make good choices about their treatment and their options moving forward. It’s about making false choices between palliative care — would you like comfort care or would you like curative care? I believe all of our cancer patients deserve both from the time of diagnosis until the time of their death, and I think we need to continue to add this as a focus to good comprehensive cancer care for all of our patients.
Fairview, fortunately, has been committed to this for some time. We have had a hospice program at Fairview for many, many years and our increasing focus on the inpatient population and earlier upstream availability of expertise in palliative care has really allowed us to expand our scope of services and meet our patients’ needs. Our patients typically are managed by different interdisciplinary teams. Part of that is due to the way that this care is reimbursed and there are certainly opportunities to improve the reimbursement structure so there are less hand-offs in care. Very few providers are able to follow patients from the time of their diagnosis until the time of their death, and we hand-off care from the inpatient team to the clinic, to the home care agency, to the hospice agency, to the nursing home, and many patients cannot get good palliative care on the outpatient side because it is difficult to reimburse that if they do not meet criteria for home care or hospice. We need to improve our access to these services. On the other hand, I think within that context we can all do a much better job integrating these services, if we commit to managing their symptoms and reducing their suffering from the time of their diagnosis on. Thank you.
DR. CATHERINE HARVEY: Remember, take notes because we want questions and comments. Our next speaker is MaryAnn Stump. MaryAnn is currently a member of the [Minnesota] State Commission on the End of Life, and she is co chair of the Minnesota Palliative Care Partnership Board along with Dr. Leenay. She is the Vice President of Strategic Innovation and the State of Minnesota Health Plan with Blue Cross Blue Shield of Minnesota, one of the larger state health plans that the Blues have. She is responsible for a number of the strategic initiatives there and is going to talk with us about how we partner. Thank you.
MS. MARYANN STUMP: Thank you so much. It is a pleasure to be here this evening. I was asked to talk about what, from a health plan perspective, is the role of palliative care and quality cancer care. And I think that is a really wonderful opportunity for us to be able to think about cancer care, all the way from the prevention extreme to the palliative care extreme so that you really see the continuum of care. One of the things that we have been trying to do is not only look at it in more of a continuum type of a manner, with care management and prevention programs and other things that contribute to quality cancer care. One of the challenges that we have is the fragmentation of the [health care] delivery system, which is one of the ways that we work with Dr. Mark Leenay and Fairview and others, by trying to look at ways in which we can align both delivery of services as well as ways in which the services can be available as covered benefits for people as they need them. Palliative care is not something an insurance company actually could look at alone either, because it really does need to be part of the continuum. About eight years is how long we have been working together on this.
I was kind of an accidental tourist in palliative care. I started out my professional life as a cardiac critical care nurse, and of course, mortality rates are not something that we really would strive for in cardiac critical care. I first became acquainted, though, with the impact of death when I was 4 years old and I lost a 2 year old sister. It changed my family. And so, when I was asked to serve on the board of a pediatric hospice, I did so not only with the opportunity to be able to try to learn from the experience, but also because even at the age that I am — which isn’t a lot beyond 4 — that I recognized that it changed my family, and it was still something that I carried with me. And so that is how I wandered into the territory of palliative care and met people like Dr. Leenay and nurses, social workers and others.
One of the things that was such a joy about not only being part of that community but continuing to work in it, health care today is really a hard business to be in. And there are opportunities where on your journey there is joy, and what surprised me was the joy that I was getting from these people that were dealing with other people at this point in life. So one of the things that we have been advancing is the partnership [to improve palliative care]. I am co-chair with the Palliative Care Partnership, and we are trying to figure out ways which will not only increase awareness, but make available both from a financial perspective and from an infrastructure perspective, appropriate palliative care for our community and for others. Thank you.
DR. CATHERINE HARVEY: Our next speaker is Teri Kast. She is on oncology nurse who since 1993 has been serving as the program coordinator in thoracic oncology at Fairview-University Medical Center. In this role, she works primarily with patients and families who have cancer of the lung and esophagus. She coordinates their care across departments, and I coined that role as the role of a navigator because that is what people in those types of roles do. They end up navigating the system on behalf of all of the users. She is also a member of the Adjunct Faculty at the University of Minnesota School of Nursing and has held an appointment there since 1999, and she is going to talk about this from her perspective.
MS. TERI KAST: Well, thank you Dr. Harvey, and thank you to the NCCS and to Fairview for inviting me to be part of this conversation with the community about a topic that is so important to me, and a topic that I have been working with for almost 20 years now. I have been helping cancer patients and their families since 1986, and I have spent my entire career in the area of oncology. It is, like Dr. Leenay, just an area that is very near and dear to my heart and I see so many of my colleagues in the audience who have been role models and an inspiration to me, so thanks for being part of this program.
Part of my role as the program coordinator for thoracic oncology is working with patients who have lung and esophageal cancer, and as Dr. Harvey said, I help them navigate through this system that can be extremely complicated and overwhelming for patients and families who are struggling with the diagnosis of cancer. So maybe they have to see someone in surgery for a consultation about whether or not that is an option for them, and oftentimes we give multiple kinds of treatments as part of their therapy, so surgery, radiation therapy, medical oncology. They may be an inpatient in the hospital for a little bit of time. They may be placed in a transitional care facility. They may be part of a hospice program. And I am the one person who is the point-person for the patient and family, and I can help them navigate through those complexities and I can be a resource person for them. And one thing that I have heard echoed here throughout the night — from Pudge and from Dr. Leenay — it is not always about the things that we have available to us, the treatments that we can provide, or the technology that we have, or the cutting-edge chemotherapy agents that we can use. The things that I see from patients and families that matter the most are, “Can you listen?” and “Do you care about what happens to me?” So that is one thing that I find very gratifying, because it does not take a lot of high-tech to be a good listener and to address some of the needs and issues that they have.
I utilize my friends and colleagues in the TLC [Transitions and Life Choices] program and palliative care quite care a bit for consultations with patients. As nurses, it is something that we always deal with. We are always called to be a patient advocate and listen to what the needs of the patients and families are. So I have at my beck and call many colleagues who can help us decide about complex issues. Lately in this arena of oncology, there has been an explosion of quality of life research that, finally, we are not only looking at the outcomes of clinical trials in terms of how long do you survive, but we are looking at the outcomes in terms of, “What do the patients think about that? What is their experience? How do they feel? Are they experiencing less pain? Are they feeling better?” And we are learning that, yes, by giving them treatment, not only we improve their survival, but we can improve their quality of life, and that is a great thing. But that has also been something that we have struggled with in terms of patients who might be requiring hospice care, is finding that balance between providing treatment and providing palliative care, and so that is an issue that I hope we can address this evening.
One thing that I want to say before I end this evening is, there are other ways for people in the community to get involved. On November 16th, the Minnesota Cancer Plan is having a summit conference where they will talk about goals and strategies to improve cancer care for all Minnesotans and it is open to the public, so thank you for your time.
DR. CATHERINE HARVEY: Our next speaker, and we always do this — the expert from out of town gets to be last — is Dr. Ann O’Mara. Dr. O’Mara is currently a program director at the National Cancer Institute [NCI], and she manages two research portfolios of investigator-initiated research that are near and dear to what we are talking about today. One of those is symptom management and end-of-life care, and the other is symptom management clinical trials — something that is fairly new out there that we have not necessarily done a good job with in the past. She is going to talk a bit about how the NCI is working to answer questions in a way that we can take the work that is done in one community and hopefully disseminate it to other communities so that there is a transfer of technology and knowledge going forward. Dr. O’Mara.
DR. ANN O’MARA: Thank you, Dr. Harvey, for your kind introduction and for your invitation. I have to make this one observation, though. Of the seven of us, four of us are nurses — close to 60%. That is the researcher in me, that 60% of us are nurses.
PANELIST: Is that statistically significant?
DR. ANN O’MARA: It is, and it is clinically significant, too! I do not have the time to talk about all of NCI’s efforts with regard to palliative care, but I am going to highlight two of them. The first is the Office of Cancer Survivorship, which was established in 1996 and supports and promotes research that examines and addresses both the short-term and the long-term effects of cancer treatment. And survivorship research focuses on the physical, the emotional, the social and the financial outcomes beyond the treatment phase, and it seeks to optimize health and well-being of persons living with a history of cancer, much of which Mark had talked about earlier.
But the real jewel — described by Patty Ganz, a breast cancer researcher from UCLA — is called the Community Clinical Oncology Program, or the CCOP. It’s the jewel in NCI’s crown, and I would like to spend a few minutes talking about that. It is a comprehensive clinical trials mechanism for disseminating the latest cancer prevention, symptom management and palliative care and cancer treatment findings to the community. It was created in 1983, we just celebrated our 20th anniversary last year. And the CCOP enables patients and physicians to participate in clinical trials at 61 major research centers in 34 states across the country, including the District of Columbia and Puerto Rico.
Minnesota is one of those states, with the Metro Minnesota CCOP, headed by Dr. Patrick Flynn, and it has been a CCOP from the inception of the program, so it is entering its 21st year. There are 12 hospitals and physician practices affiliated with the Metro Minnesota. Among them are Fairview Ridges, Fairview Southdale Hospital, United Hospital, and Unity Hospital, and there are many more, but I just wanted to show you what is local here and supported by NCI. As a CCOP, Metro Minnesota has access to a wide variety of NCI symptom management and palliative care clinical trials aimed at improving the quality of life of patients undergoing curative or cancer treatment. During fiscal year 2003, Metro Minnesota was able to offer cancer patients clinical trials focusing on reducing hot flashes, on reducing fatigue associated with chemotherapy and radiation therapy, on preventing osteoporosis, and on treating diarrhea associated with pelvic irradiation. For all types of treatment trials, prevention trials and symptom management trials, Metro Minnesota has accrued 382 patients to all of these different trials. So this is just really a snapshot of NCI’s efforts in improving palliative care, and just a brief overview of our many activities. So let me end here, and I look forward to the questions that you might have about other NCI activities that we have. Thank you, Catherine.
DR. CATHERINE HARVEY: I am going to ask our speakers to come forward because now we move to the important part of this, which is the open forum where you have an opportunity to talk with us. I need to give you some instructions about how to do that so that we can take advantage of your comments from the floor, and we hope they are plentiful. We are recording this because one of the things that we want to do is to be able to capture the issues here and capture them accurately, so we ask if you have questions, you can do one of two things. You can either write your question on a card that you have in your packet and pass it to one of these ladies, and they will pick it up and bring it to me. Or, if you would rather ask your question or make your comment from your seat, if you will just let us know, we will get a microphone to you so that we can both capture and hear your question.
I really was just so impressed with all of your comments, and I took notes as we went, and there were so many things that I wanted to ask but since I have access to you other times, I am going to behave myself, but I do want to throw one question out there while people are getting ready for their questions.
Q: Those of you who are providing clinical care for this group of patients, how does your team deal with the fragmentation that currently exists in the health care system, both from a financial as well as a coordination basis? And more important than how do you deal with it, what do we need to do on a national basis, or on a payer basis to diminish that fragmentation?
A: (Teri Kast) Well, part of what we did was hire a person like me, to help with that feeling of fragmentation. For certain types of conditions or cancers or diseases that have multidisciplinary nature about their treatment where you have to bring a lot of people from a variety of departments together, that does not always work if the patient is left to figure out what the plan is supposed to be and navigate from system to system. While everybody within each department is very helpful, nobody knows the big picture. So part of this coordinator role that we have implemented in a variety of different types of cancers throughout Fairview is to help patients figure out how to navigate through the system, to be their advocate, no matter where they are, to be that point person who knows where they have been, what the plan is and where they are going. And patients and families appreciate it a lot. It’s very gratifying.
Q: (Catherine Harvey) Are you able to bill for your services?
A: (Teri Kast) I am not. No, I am not currently.
A: (Mark Leenay) From my perspective, the two biggest barriers to seamless delivery and access to palliative care are the two Medicare requirements that the other insurance plans have mirrored. One is the six-month prognosis criteria for hospice, which is a huge barrier to enrollment, and the direction around hospice regarding foregoing potentially curative therapies before enrollment. And the other piece is the homebound status within home care. Fairview has a Transitions and Life Choices home care program for patients who are still pursuing curative therapy, who are on protocol to help manage their symptoms. But, if they do not meet the homebound status, we cannot care for them in their homes. So those are two very real barriers and we have all developed some work-arounds for them and try to work within the programs we have, but it is a challenge.
A: (MaryAnn Stump) I think this issue of fragmentation is something that we have got to put on the top of our list nationally, and it is not just related to the treatment of cancer patients or palliative care. I think it manifests itself significantly in those particular situations. There was a study done by The Robert Wood Johnson Foundation several years ago in which the “cliff notes” version of the [final] report stated that there is no place in medicine where the needs of the patient and what is done for them — and with them — is more disconnected than at end-of-life. Although it manifests itself most significantly [at the end of life], this fragmentation is a problem everywhere. We try to fix it with people like Teri and with others, but the lack of system is the problem.
The [Institute of Medicine] report, Crossing the Quality Chasm: A New Health System for the 21st Century, looks at “system-ness,” that looks at “patient-centeredness.” It calls upon all of us to think about designs, not only around structural designs and process designs, but also around financial designs as well as incentives, that allow for us to provide a continuum of care that gives us systems in which we can demonstrate to patients when they come to us, that we remember them from time to time, and that we have got left-hand/right-hand coordination in a way that helps them. This is the work that we need to be working on together.
Q: (Catherine Harvey) Thank you. Oncology physicians and nurses sometimes say, “My patient doesn’t need palliative care yet.” What would you say to them?
A: (Teri Kast) I feel as a nurse that all the care that I give is palliative because my job as a nurse is to listen to the patient and the family and help them deal with this part of their life as best as they possibly can. I agree that palliative care should be part of the process from the moment you encounter the patient until the patient does not need you anymore. Does it always work out that way? No, but we try very hard.
Q: (Catherine Harvey) Do we have an educational problem here? Is it a definition problem, is it a medical education problem, is it all of the above?
A: (Mark Leenay) Yes. I think those of us that advocate for palliative care — and there are many of you in the audience as well — need to come up with some consistent language and some consistent scripts and messages, and we need to move away from process outcomes that we all push for. We need people in hospice sooner. We need length of stay in hospice longer, and move back to palliative care outcomes, which are reduction of suffering.
Pain beyond the patient’s goal is unacceptable. Giving patients accurate prognosis is required for them to make informed decisions about their treatment choices, and looking at actual outcome measures and holding us all accountable. Because oncologists and oncology nurses do palliative care every day. They may or may not call it that, but we know they do, and we know the good ones that do it really well. So we really need to think about what are we pushing for, and start pushing for those outcomes. There are resources to help them meet those outcomes, like palliative care teams and programs and hospices, but we need to switch to outcome discussions.
A: (Cary Zahrbock) From a consumer perspective, I think, “How can we limit the damage that this is going to do to me, no matter whether I live or die?” Because it can be so damaging to live through all of this, and then how do you keep getting to life? You always find a new normal, but let’s make that new normal less painful. And if we can do things from the minute of diagnosis forward, it is going to reduce the detriment, the suffering, the negative consequences of this diagnosis. To me, that is when it is “soon enough” — when you need it, not at some abstract point. That needs to be our expectation in terms of quality care.
A: (Gordon Alexander) From a system perspective, I think the power of language is incredible, and I think palliative care, unfortunately, has meaning that carries great weight and baggage in some cases, and symptom management is another.
I think considering how we talk about this is very important, even to the impact of “coordinating a multifaceted system” — as opposed to “fixing a fragmented system” — brings a different energy to the table and allows people to be welcomed rather than defensive. I do not think any fragmented system intentionally does not talk to each other. I think it is a multifaceted system that [exists] because of the incredible expansion of knowledge. If we look at the incredible expansion of knowledge [ . . . ] we need to have people who can coordinate and connect a multifaceted system. It is a two-edged sword. It brings great benefit, and it has another edge that we have to work on.
A: (Audience member) What I find as interesting is . . . I am in school finishing my masters in oncology nursing. I have been an oncology nurse for 15 years. And part of my thesis component is incorporating palliative care concepts into the continuum of cancer. But when you do a [literature] search on “palliative,” what it is immediately tied to is “end-of-life.” I think patients, and also health professionals, tend to connect those two too strongly, and that we need to separate it away from . . . that it is a continuum rather than just end-of-life. It is a huge struggle when you start talking to people about being palliative. They think, “Oh, my God, I’m dying.” And [you respond], “No, we are trying to make you more comfortable.”
It is a huge battleground that nurses sometimes fight against other nurses, nurses fight against other health professionals, physicians, when we are saying we want somebody to be comfortable, it does not mean we are giving up. We are just trying to make them comfortable. Cancer is a chronic condition. People are living with cancer for years and we are not doing them justice by treating them, sending them out and never recognizing the fact that they are going to live with this for their life. Psychosocial components are so valuable. I wish we did more research tying palliative care into continuum, rather than palliative care to end-of-life, and I think we would get a lot further.
A: (Catherine Harvey) I think the vocabulary problem really exists in terms of how we define this whole field, and when you are sitting in a group like this, people understand that. But when you get outside of the group, it begins to be very uncertain or unclear what we are really talking about.
Q: (Catherine Harvey) I have another question/comment. I am switching topics a little bit here. The bottom line is reimbursement. How does Medicare reimbursement affect care? It certainly will be a problem in the future as baby boomers get on Medicare and cannot afford supplemental insurance.
A: (MaryAnn Stump) Mark will talk about Medicare, and then I will talk about reimbursement.
A: (Mark Leenay) There are lots of different statistics out there about what care at the end-of-life costs Medicare. My understanding is the hospice benefit costs Medicare 0.01% of its annual budget. But we have all heard the statistic of 20-30% of Medicare dollars are spent in the last 6 to 12 months of life, depending on what statistic you look at, and yet there is continued pushback about making sure we carve the hospice benefit out correctly and do not risk that. It is an ongoing challenge. Cancer care, in particular, is becoming more and more of a chronic illness, and we have trouble prognosticating in some cases when patients are going to die, and it is an issue.
A: (MaryAnn Stump) We have problems with reimbursement and affordability, period. Palliative care, new technologies, various other things are all adding to that. What we are doing now is not working. Affordable health care is an issue, and Mark [Leenay] and I have had conversations on many occasions in which he’s said to me, “Oh, it’s all about reimbursement.” And I have said to him, “If we had all the money in the world, we would still not be delivering quality palliative care because the infrastructure for delivering it isn’t there.”
The business models that we are using now for health insurance are not working. They are not sustainable. You have heard a lot about consumer-directed models. Again, think about the two different approaches as far as the presidential race is concerned. We have got one candidate that is really advancing the HSA [Health Savings Account] type of model, along with the consumer-directed and the market model. We have got another [candidate] that is advocating for universal coverage, especially for children. We have got problems out there, and the only way we are going to solve this is by working together on it. It is not just a reimbursement problem — it is much more than that — and we need to be thinking about ways in which we address that.
Q: (Catherine Harvey) How do payers look at what I call the soft, non-medical services that we identify as part of this whole palliative care process? I am thinking specifically about some of the things that you all talked about — some of the psychosocial supported services, and the spiritual care, and the other things that we identify as part of this quality continuum — that help people to live better with this disease. How does that tie into this whole reimbursement phenomenon?
A: (MaryAnn Stump) Right now, we have a reimbursement model that is based on procedures. One of the things that we have been exploring in the Palliative Care Partnership and the work that Mark [Leenay] and I have been doing is how can we start looking at this as more of an episode, or more holistically?
We are doing this in other situations. Capitation got a really bad rap a couple of years ago, and yet the idea of actually looking at a global fee-for-team care that includes the kinds of things that encompass palliative care is the right kind of model. We just need to refine it and explore ways in which we can have pilots and demonstration projects. [We need] opportunities to study these kinds of things in ways that include not only the correct continuum of services, ways in which the kinds of things that we — as a health plan — can do that link some of our care managers, our nurses and our disease management people that are part of cancer care. [We need to] put our heads together around this and figure it out, because it has got to be new models. I do not know what the new models are going to look like in the future, but I will bet my soul on the fact that they have got to be collaborative, which is one of the reasons why all of us have got to start working together and be creative about what we need to do, and that is serve the people that we care about.
A: (Audience member) I just wondered if I could say something in perspective. I am with the TLC [Transitions and Life Choices] palliative care team. I am a retired hematologist so I have been on both ends of this story. Expenses, of course, are a big issue nowadays, but I want to again underscore the perspective. When I got started in hematology in the early 1960s, we could treat and cure nothing. Please do not forget that. We now cure acute leukemia in children, many adult acute leukemias are cured, Hodgkin’s disease is often cured, non-Hodgkin’s lymphomas are cured, multiple myeloma is treated, and lives are prolonged and symptoms are improved. And this comes not as the result of a magic wand, but there are multiple disciplines involved in the care of patients with malignant disease, and that includes nurses, and x-ray technicians, and laboratory technicians, and blood bank technicians, and doctors, and drug developers, and I could go on. But this is not your “take an aspirin and call me in the morning” picture story. This is extremely complicated. We have come a long, long way, and we will continue to progress, but it is not going to be cheap. There are hundreds of people involved in every individual’s care, and it has to be put in that perspective.
Q: (Audience member) Any advice to a consumer who is living with cancer who might want to access this kind of care? I am not sure at what point I would interface with this system . . . or how, or if my insurance would pay . . .or if I need to be the one that calls the insurance company to say, “Is this something that you guys even know about?” Because I make a lot of phone calls to the insurance company.
A: (Mark Leenay) Your health plan may pay for pieces of this care. We talked about whether we use the term “fragmented” or what was your term, Gordy?
A: (Gordon Alexander) Multifaceted.
A: (Mark Leenay) Multifaceted care.
Some of the employers in town are now starting to cover this within the benefits that some, including Fairview, will add as a benefit for its employees in 2005. So some of these resources are available.
I think one of the things that is most important for consumers is to become your own self-advocate for this. And if a physician or anybody tells you, “Well, you’re just going to have to live with that,” that you need to get another opinion or reach out for other resources.
We are, in 2005, about ready to open a palliative care clinic so we will have community resources available for people who can come in and get a consult and get an outside opinion. I am not aware that there is another clinic like this in the Twin Cities right now. A lot of this has to do with improving care within the systems that already exist. The next step, in terms of creating systems outside of that, is a bit more of a challenge for us. We fixed it, we think, in home care and when patients come into home care that have these conditions, we can have experts help them. When they come into the hospital, we have experts that help them, but creating a multifaceted system that works beyond that takes a little more time.
Most of these programs have not been around for a long time. Hospice has been around since 1983, and Gordy has talked before about the fact that it takes a while to then change the system. The health care system does not change overnight, as all of you know. I guess that is the best answer I can give you.
A: (Teri Kast) I have something to add. I sympathize with your concerns and your question because a lot of the times, the people who are in the front lines delivering the care have no idea about insurance and what is going to happen until you butt up against it when you are requesting a service. And so, I have had to learn on the fly. It is very complicated, and an issue that I struggle with a lot, and I am learning more and more about. It is a definite problem, because a lot of front-line care delivery people do not know a lot about how to deal with the insurance aspects of it. They are not trained in that area, and it can be very intimidating for both patients and professionals.
A: (Cary Zahrbock) One of the nice things that has happened over the number of years, and it is kind of like the people we are having cures for now, is things are still developing and we are still making some progress. Some resources that are available . . . [include] the NCCS web site www.canceradvocacy.org. One of the things that I [consider is] . . . how do I find a credible source that can also help guide me and learn through this new country [of cancer] that I am in? NCCS has a lot of links to different credible organizations that can also help guide me. [The website], like the Toolbox, can be really helpful. . . . And so that is one potential resource.
A number of payers, and I am going to say payers rather than insurance companies, in Minnesota have “case managers” that can really also help walk you through. This is different than the customer service area, so that is [a different vocabulary] you can use [with payers], “Do you have a case manager?” So that might be guiding you to a different part [of the system] that can be more helpful.
Another organization that is available nationally, and they can do some linking to people, is www.cancercare.org. One of the things in terms of a survivor network is that it is wonderful to have professional resources [like CancerCare].
One of the things that I think has happened as the face of cancer care has changed from an inpatient setting to more outpatient — the good news — is we don’t have to stay in the hospital and have all that to get over when we get out. The bad news is, some of those resources that were available years ago in the hospital are no longer available when you are just doing outpatient care once or twice a week. The good news is also about the web . . . there are some credible sources. You want to link [to those good resources]. That is a good pathway.
A: (MaryAnn Stump) We have, in LaCrosse [Minnesota], a whole cadre of R.N.’s that actually do care management including cancer care and can link up with your provider. If you have Blue Cross Blue Shield, call me and I will direct you to the right person.
A: (Catherine Harvey) The one thing that I want to add is, I think you are asking the right question, more than anything.
As a person who is going through this experience, you have both the right and the opportunity to ask for help for all of your symptom management, not just to get you through the treatment phase of your disease. In asking that question, you are going to help us change the system from the other side, because patients are incredibly powerful people when it comes to saying to their care team, “I need this from you as part of the service that I need to live with my disease.”
A: (Audience member) This is for the woman in front of me. If you get a case manager like they are talking about — and many insurance plans and self-funded employer plans have what is called “alternative care” language in them — and that takes a case manager to help you work on that, but sometimes they can get your physicians to take a look at other levels of care and you can work it out with the insurance company.
Q: (Catherine Harvey) I am going to move on to another question. A comment from the audience raised the issue of conducting more research in the field of palliative care. What is the National Cancer Institute doing in this area, and how do patients learn about this research and participate in the clinical trials?
A: (Ann O’Mara) There are two portfolios that I manage. One is investigator-initiated research, and right now I have approximately 55 investigator initiated projects throughout the country being conducted more with academic settings.
And then there is CCOP [Community Clinical Oncology Program] which constitutes 34 states across the entire country where we have clinical trials for treatment, cancer treatment, cancer prevention and specifically, symptom management and palliative care. Currently, NCI has about 50 different kinds of symptom management trials open through the CCOP program, and that is right on our website.
I am not sure if any of you are familiar with the Institute of Medicine report on improving palliative care. One of the criticisms that they had of NCI [National Cancer Institute] is, specifically Kathy Foley from Memorial Sloan Kettering said, “You go to the [NCI] website and you don’t have a clue to who holds the research portfolio, or if a researcher is interested, who can I get in touch with?” Well, it was an easy thing to correct. It took us longer than we thought, but one of our responses was that now when you go to our web site www.cancer.gov and you click on funding opportunities, we have created a whole list of all the different funding opportunities for researchers to conduct research in the area of pain, symptom management, palliative care, end-of-life care in the cancer population. So that is one thing that we have done.
The other thing is the fact that palliative care is not unique to cancer. It is across all of the — what [NIH Director] Dr. Elias Zerhouni says are all the “silos” of NIH. So there are several efforts within NIH to collaborate amongst the Institutes. First of all, to share our resources that we have, we will have an application that is very close to being able to be funded. So there is a lot more of that activity.
Another thing that we are doing within NIH is a pain consortium to advance the science of pain management. Pain like any other symptom, is not unique to cancer. In our efforts of creating this pain consortium, we have found approximately six or seven Institutes within NIH that are supporting research. It was an eye-opener to me because it really echoed Dr. Zerhouni’s criticism of NIH that we are silos. And we are not quite sure what is going on with the other Institutes, so that is one of our first efforts in advancing our understanding of the different symptoms.
We also have a sleep consortium for the problems associated with sleep. Again, the same issue, it is not a symptom of a particular disease — it crosses many different Institutes. The same efforts are being made within [other Institutes of] NIH with these symptoms that we see in cancer cross other diseases. And we will increase our own knowledge of how to treat cancer patients by engaging in conversations and funding different research projects that are from other Institutes — Neurology, the Nursing Institute, the Aging Institute, et cetera.
Q: (Catherine Harvey) Thank you. This question was written specifically about challenges here in Minnesota. And there are two questions and I am going to read them together because I think they are related. What advantages do Minnesotans have to quickly making palliative care the standard of care? What would it take, I think, is what they are really asking here.
And, what are some of the challenges unique to Minnesota in prioritizing providers to include palliative care, or to “incentivizing” providers to include palliative care in their treatment planning?
A: (Gordon Alexander) I think the way we are going to do that best is to acknowledge, as Mark [Leenay] said, that palliative care is done as part of everyone’s daily life in the practice, whether it be nursing practice or medical practice or social work or chaplaincy. I think, first of all, we start saying, not, “How do we get doctors and nurses to include palliative care in their practice?” but “How do we help them do it better?” It is very hard to get people to follow your parade when you stiff-arm them at first.
Part of this is just acknowledging that people are trying to do the right thing. How do we get them the best evidence we can at the time? Most people are trying to do the right thing. So, I think it just changes your mindset about how you approach this, and I think that is why Mark [Leenay] has been successful at Fairview. He has not been going around telling people, “You’re doing the wrong thing.” He says, “How can I help you?” And almost exclusively, once they understand that, they are willing to seek that help.
After that, we have huge resource issues of just getting more and more people engaged and getting better research, and finding out how you treat bone pain differently and all these things that are really important. But the first thing is, try to bring the community together around the patient — and that is still an issue — but that it is a battle that is more winnable than the way the question was framed.
A: (MaryAnn Stump) The Minnesota Partnership on Palliative Care actually has both of those items as part of our agenda. One of the things we are looking at relative to the adoption of guidelines is we recently connected with the Institute for Clinical Systems Integration, ICSI, that is nationally and internationally known around guideline development. [We have been] talking to them about what it would take to look at guidelines specifically around palliative care, because some new national consensus guidelines recently came out. Now, ICSI bases their guidelines on evidence, so there is a little bit of translation opportunity, but still the territory is similar territory.
The other place we found some synergy that we are going to be exploring more is, what about those conditions in which palliative care would be appropriate in the continuum of care — COPD [lung disease], congestive heart failure — that ICSI has had guidelines for a while and has never thought to include palliative care as a part of the continuum. It was one of those, “Oh, my gosh!” [moments]. The next round in which they are going to be looking at the revisions of the guidelines, palliative care will be included in consideration as far as those diagnoses, and from now on others as well. So we are making progress.
One other comment I wanted to make, though, about palliative care and how it fits: I think the vocabulary is a real challenging one, and one of things that we have also been exploring in the Palliative Care Partnership is, “How can we potentially reframe the issue?” We have wellness continuums. We have all the health plan companies and many employers have a portfolio of wellness approaches all the way from prenatal care, smoking cessation, weight management. Why shouldn’t we be thinking about palliative care on one end of that wellness, as opposed to thinking about it in a disease model. Are there ways in which it would be helpful and also appropriate for us to be thinking about it in a re-framed way? That is another thing that we are going to be exploring through the Partnership.
A: (Mark Leenay) One of the ways to change what we do here in Minnesota would be to invite the National Coalition for Cancer Survivorship and someone from NCI and some experts in palliative care, and hold a public forum to create a consumer demand for better care, and I hope that tonight does that. There was a study done in Wisconsin on pain management where they had an incredible impact on inpatient pain by telling patients at admission to the hospital, “You need to expect to have well-controlled pain during your hospital stay. It is unacceptable to us here at the hospital, to any of our staff for you to have any pain above your goal from the time of your admission until the time of discharge.” It was one of the most effective means of managing pain that had been tested around the country, so we hope that we create more advocacy for this so that consumers are driving and expecting — that people expect and advocate for better palliative care. And talk to their physicians, their nurses and the other staff, “These are the outcomes that we like and we want and help us achieve those, and if you don’t know of resources we know of some others that might help me or help you.”
A: (MaryAnn Stump) Wouldn’t that be a great pay-for-performance opportunity, too, to think of the percentage of people that were either pain-free or pain-controlled within an institution? If we could start thinking about those kinds of metrics from the standpoint of our shared goals — I think that could be very powerful as well.
A: (Audience member) I am a survivor, and I am a chaplain. In this conversation I had something come together for the first time that I would love to explore, and that is, in extending the whole concept of palliative care — which is not a new one for me — but to really look at the entire spectrum of patient care, an engagement with any dimension of the health care system from diagnosis on. There is an opportunity to also see quality improvement as palliative care.
I began to recall all the times as a consumer where, when you are dealing with life-threatening illness, every time you go and your x-rays are not where they were supposed to be, or you got the wrong test results, or the doctor did not tell you the whole story, or you got delayed for several days to have a procedure done, what comes up behind that is, how can I maintain my confidence, if the dietary issue is “best four days out of five” that becomes a palliative care issue. The suffering that is going on for the patient has nothing to do with, “I ordered tuna fish, you sent me roast beef.” It has to do with, “How can I trust you with my life?” And as an employee in a multifaceted complex system, it just struck me, what if I saw, and what if my colleagues and I began to see our work in quality improvement in the light of palliative care, and that would be something.
I do not know if NCCS could offer some consciousness-raising materials for those of us who are employees to begin to see that we might have contributions to make that are really palliative care, that we have never even thought about as palliative care.
A: (Catherine Harvey) Very thought provoking, that is a great idea.
A: (Cary Zahrbock) I just have to plug one thing: the NCCS Imperatives for Quality Cancer Care. They are available through the web site, www.canceradvocacy.org. It is the perspective from the patient on what is quality of care? It is a little different than the outcomes measures that are later.
My other world — my job stuff — is related to behavioral health quality. . . .Quality is when somebody talks to me and prepares me. I took Ativan when I was on chemo, and I thought it was an anti-nausea drug. Well, who knew it would do some short-term memory stuff? I would talk to my sister, but I did not remember that I talked to my sister. I thought I was going nuts. Then when I said [to my doctor], “Goll, this thing [my short-term memory] happened!” They say, “Oh, yeah, that will do it to you.” That is a quality of care issue.
Some of the planning and preparing — I could have dealt with that much more effectively. One of the things I think about is — and I do not have a good word for it yet — but it is kind of like what you would do if you are going on a long trip. You plan the things you can plan. You make room for some things, and I kind of think of it as a coping strategy. When things change, your whole world goes over here, then you are going to need some new coping skills, some new resources that you did not have before because you are in a whole different world. You need a translator; you need some of those different things. And how do we help people build that? I really like the suggestion of having the patient start asking for things. It makes a difference when you are the one saying, “Oh, doctor, who cares very deeply about me, how do I help, or how can you help me get this?” To which the doctor replies, “Oh, what do you mean, me? Oh, my nurse, I think, does that.” I think that is really key for the patients to start looking and consumers, survivors, everyone, and start asking and keep asking. That is what makes changes.
Q: (Catherine Harvey) Well somewhere along the way, we are all going to be consumers. If it is not us, it is somebody we know or love, and if we were to do the usual show of hands, just about everybody has a dog in this fight, so to speak.
I want to read two questions together because I believe they were from two different people, but they are very similar. Does palliative care focus on caregiver families who need to have their needs met in order to continue to support their loved one during the chronic disease phase and end-of-life phase?
The second question is, what counseling resources are available to patients and their families, and how is that provided?
A: (Mark Leenay) Palliative care absolutely involves care of the family. One of the things we do is focus on what the family needs are and reduction of suffering within the family unit. My master’s degree was in family systems therapy before I went to medical school, and I tell people that my M.D. degree gets me in the door, and then most of the work I do is my family systems therapy stuff. The pain management, the symptom management stuff is a piece of cake. I know Ativan causes memory loss. I do not think all physicians know that. There are other drugs that cause less memory loss that are just as effective, or more so, for nausea and anxiety. So those pieces are easy. The family systems stuff is the hard work that we do every day.
The hardest work we do with families is dealing with different expectations, different wishes, different goals. Our number one goal when we meet with a patient and their family is to come up with a treatment plan that we can all reach consensus on: “Our goal is not to continue treatment.” Or, “Our goal is not to stop treatment.” Our goal is to present the options to make sure they have good adequate, appropriate information and then come up with a treatment plan that is going to make sense for that entire family unit, and if we can reach consensus, then we can all move forward together in a way that makes sense for everyone.
A: (Ann O’Mara) For NCI, caregiver burden is an emerging area of interest amongst a number of researchers across the country. And also, investigating how caregivers report patient symptoms when patients can no longer report their symptoms. There is a pretty significant disconnect between what patients are experiencing and what caregivers [report] — both too much and too little — and providers.
We are just talking about caregivers right now, informal caregivers. Financial cost is an area of interest that is being studied, not only amongst several researchers funded by NCI, but also by the Agency for Health Research and Quality, which is another agency within the Department of Health and Human Services. It is a growing area of interest because we know, as somebody said, clinical care is moving outside of the hospital and into outpatient, and families are being stuck with that bill — both the financial bill and the emotional bill of having to take care of that, and we do not know much about it.
A: (Cary Zahrbock) I have to put my behavioral hat on and talk about the counseling piece. Talk about silos within different pieces. Let’s talk medical behavioral. Often the insurance benefit is separate from the psychological, behavioral health, mental health services. It is separate from medical, and sometimes the behavioral health clinicians are not so good at thinking about medical conditions and their impact. “You are depressed.” Does that not make sense with this? Or, do a depression screen that all of the pieces relate to the medication you are on, not to the circumstances. Then how do you direct a plan? It is again one of those things that we need to keep working on — we are not there yet. We can expect more.
There are those behavioral health services generally that are available through a health plan. You want to be asking for people who have some of this expertise in terms of looking at medical conditions as well. That is one of my passions. Coming into this whole world of cancer, who knew that we are still not there, yet. But we keep growing and at least now there is research being done on psychosocial impact, on what is helpful in terms of therapy. But it is another area that really needs to keep coming forward.
A: (Mark Leenay) I also do not know that the health care professionals understand the financial burden to families of this. One of the most surprising data to me as I moved into this field was between 20-30% of families cross the poverty line, lose their entire family savings, lose a job caring for somebody in the later stages of their illness. That is an enormous burden, and an incredible thing to think about and be aware of, and I do not think we all are very well aware.
Q: (Catherine Harvey) I am going to make this our last question, and I want each of our panelists to answer this. I have saved it to the last because it looked like a good last question. And then, before I ask them to answer it, what I do want to do is remind you that they are willing to hang around at the end, so if you have other comments that you want to make or things that you want to talk with us about, please be sure you do that.
If you were Miss America this year (laughing), no . . . If you were able to focus the cancer community on one issue related to palliative care, either due to its importance or good place to start, what is the one issue you want us to take out of here to start working on going forward? If you were able to focus on just one issue related to palliative care that you believe is either important or a good place to start, or achievable — let’s add that — what would that issue be for you? What would that take-home issue be today?
A: (Teri Kast) I think it is an issue that we have heard echoed here again and again tonight, that palliative care starts when you walk in the door. And that is very doable. I think that is very doable. We have heard a lot of good recommendations from . . . I like some of the suggestions that you had, MaryAnn [Stump], about tying some of our outcomes to reimbursement and incorporating that. It is something as simple as asking patients when they come into the hospital, letting them know that we expect to be able to achieve good pain control, or whatever symptom we want to focus on. Those are things that I think we can implement right away and be successful in.
A: (Ann O’Mara) I will take the next one. I would say communication. You talked about palliative care and the importance of patients communicating their symptoms and encouraging our clinicians to ask those questions about their symptoms. I just really believe that there is still a disconnect in communicating, and encouraging patients to be assertive. There is a researcher who has done quite a bit of investigations in the area of hand washing, and she finally concluded that her take-home message — after many, many years of this area of research in infection control — was that patients have to tell clinicians to wash their hands when they come in the room. And I think we have to take that message and think about it in palliative care, and asking about pain relief, etc.
A: (MaryAnn Stump) Mine is pain control. It is pain control, pain control, pain control. I think that is where we start; that communication can come from that, but it is symptom relief and pain control that is, I think, the right lower rung of Maslow [Hierarchy of Needs].
A: (Gordon Alexander) I will not add to any of the others, but what I think is something that I am going to say, “Okay, I can work on this in my job,” is that encouraging patients to, when they enter the institution, be it a clinic or whatever, to start telling them to assure that they discuss with their clinician — be it nurse or whoever — that I want to talk about my goals of therapy. I want to talk about my goals of the stay. I have been beating on this, trying from the physician’s side to say, “Okay, it’s your job to go in and establish what the daily goal is.” But Mark just triggered this: what if we tell our patients that it is their responsibility or the family to talk about what their goal of therapy is that day, and be assertive about that. I have a feeling I might be more effective in doing that.
A: (Cary Zahrbock) I am thinking about a symptom management plan, so the minute you get diagnosed, that we can be asking, “Okay, what symptoms may I experience and what is our plan to deal with those symptoms including the psychosocial? Am I going to need some behavioral health therapy along with this? Can I expect pain, can I expect . . .?” What are those things? Nausea is so much better with Zofran. Thank you! It is so much better, but it does take a plan. . . . I think the thing now is, get a plan. Get a plan in place and ask your doctor for a symptom plan, and that you are in charge of it. You take it to everybody. You can get your checklist.
A: (Mark Leenay) To link a couple of these together, I think it would be of value to have us on a routine basis do a quality of life assessment on our patients, and have adequate research to document that that is an appropriate quality of life assessment and that it is a validated tool. Then, I do believe by measuring things and documenting it on a scoring system, that it makes it very difficult for us to ignore that, so a distress scale, a quality of life assessment, NCCN [National Comprehensive Cancer Network] also has a recommended distress scale. There are many out there. But, there are not that many validated over time, from the time of diagnosis till death, that we could all use together and work toward common goal for improved quality of life, broadly defined, not just symptoms.
Q: (Catherine Harvey) Are there other “one items” from the audience? Did they forget any one item that we need to add?
A: (Audience member) What should be reassuring to the community is the recent emphasis, thanks to the likes of Mark Leenay, on educating physicians in palliative care. The very fact that there was a lead review article recently in the New England Journal of Medicine [September 9, 2004] on palliative care gave it an element of credibility.
Many of the residency training programs in oncology now require that their oncology fellows have exposure to palliative care. The same is now being true with internal medicine, and I think Mark and others have been teaching medical students now in issues of palliative care. It is getting out there and it is becoming, if I may use the word, respectable, and necessary. That should be encouraging to everybody. It’s a start.
A: (Mark Leenay) Thanks, Rudy. And I think education is critical, not just for physicians. I think across the board. Physicians, I talk to chaplains and pastors about, “What kind of education did you have in seminary school around death?” “Nothing.” “Didn’t you have anything in medical school?” “No, I did not have any curriculum on this at all.”
Kelly and I are going to go talk to some morticians, and we wanted to know what they wanted to hear, and they said, “Well, we’ve never seen a patient, or we have never seen a person die.” A shock in the audience at first, but think about it. I mean, how often did they see that happen. They don’t. So I think education across the board in interdisciplinary education. Ann [O’Mara] talked about the 60% — what was the ratio of nurses to others on the panel? But we can learn from each other. I have learned a ton from the chaplains, the social workers, the nurses on my team, and I think we have all learned from each other, and I think that makes us richer providers.
A: (Catherine Harvey) Any last words from the audience?
A: (Ann O’Mara) One other thing I would like to say. On the hematology boards, there are now questions on pain and symptom management. They are required on hematology boards. So we are moving ahead in education.
A: (Audience member) I guess I am still concerned that the reimbursement side of things, to me, is still the dog that wags the tail. The very important tail is the excellent care we can all imagine and see examples of, and unless we start doing research on payment models to create examples for Medicare, to move one of the biggest payers doing probably more end-of-life payment than any other single payer, I just do not know how we are really going to move forward in a lasting way. It is just going to be this give-and-take, providers knowing how to do a better job, but not being paid well enough to do that good job.
A: (MaryAnn Stump) I agree with you in terms of the research. I think that is absolutely critical, and it is interesting for me to watch the emphasis now on chronic disease management in Medicare and obesity, and we are not paying attention at this point to palliative care, and I think that is something we are going to have to continue to try to advocate for.
DR. CATHERINE HARVEY: Well, I want to thank all of you for coming. You have provided NCCS with an incredible amount of information that we will take and use as we begin to define our policy and our action initiatives. I want to leave, though, challenging you to engage each other locally and not let tonight just lay fallow.
You have a group of people here in the room who are very committed to quality care and to understanding what it will take to make, or to improve the care of the people that you see every day and love in your own community. So I would encourage you to keep this dialogue going, find a vehicle for it, and keep it moving because you have really started. And Pudge would really like it if the meeting we dedicated for him would turn into something that was of lasting value for his community. So I think we owe it to him and to all the Pudges that we see and treat to do that going forward. With that, I am going to thank you all and again encourage you to speak with us outside. Thank you.
