Learning More About Palliative Care Health Radio Network May 24, 2007 Bonnie Letinich, M.S.W. Gerri Haynes, R.N. Please remember the opinions expressed on Patient Power are not necessarily the views of Evergreen Healthcare, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. Introduction Hello and thanks for being with us once again on Patient Power. I m Andrew Schorr. Hey did you watch American Idol, the finals last night? It really was a good show. Our Seattle guy and I'm in Seattle, Blake, he didn t win and seemed to be perfectly fine with it. I think there was an article on the front page of the paper here that said, Even if you don t win, you'll probably make millions of dollars and do just fine. I think they even gave him a new Ford Mustang yesterday, so he s doing okay, but it was a lot of fun. I was thrilled to see Smokey Robinson and Tony Bennett and Gladys Knight on there too. So it was the kind of entertainment that unfortunately we don t have that often any more, but that makes life worth living. Now so many of the people who tune into this show have a health concern, maybe a chronic health concern. So you say, 'How can I live as well as I can with that health concern? I want to have as high a quality of life as we can.' Yeah I d love to be cured, love not to take any pills, any medicines; I d love to be able to play golf or tennis every day or run a mile or whatever you want to do, garden to your heart s content, but maybe that health concern restricts that. So how can you do as well as you can? There is your doctor or nurse out to cure you. That s their goal, but maybe that s not possible, and as we get older as an American population maybe chronic illness is more often part of our lives. So that s were we come to this term palliative care. Now when I think of palliative care I ve usually thought of related to hospice and end of life, and I misspoke yesterday when I talked about today s program on yesterday s show. I said, palliative care, my dad had it, you know, he was getting morphine in his final day or so in intensive care when he was 92, and his prostate cancer complications had really gotten out of hand.' Certainly that has a place, but I think we are talking about something different or much broader than that. So we have two experts who are with us that are joining us. They are involved with the medical center that I am very fond of, Evergreen Health Care and Evergreen Hospital Medical Center that s right outside Seattle, kind of in the high tech area in the shadow of Microsoft in Kirkland, Washington. Joining us today is a very well respected social worker Bonnie Letinich and also Gerri Haynes. Gerri is trained as a nurse, Bonnie is trained as a social worker, and together they work very heard in the Palliative Care Program at Evergreen Health Care, and both of them I know teach. Bonnie teaches 1
social workers I think, and then Gerri you teach budding physicians. So help us understand and I ll start with you Bonnie, is help us define palliative care because I think all of us think well that s maybe some pain medicine or whatever that you are going to give somebody when they don t have long to live, but yet now I know it is defined much more broadly. Well thank you for inviting us here to join you today. Palliative care helps people who have progressive, complex life-limiting conditions. It helps people to live comfortably for as long as possible wherever they reside. I think that s a key feature is that we try to support people in their homes, in their nursing homes and adult family homes, wherever they reside to get quality of life and to understand their condition and the options for their care; to provide a consistent and organized decision making framework. Oftentimes people are given a diagnosis, and they really don t know what the next steps will be, and they don t understand how to move through the trajectory to make the decisions that will enhance the quality of their life and give them the time to do the things that you brought up earlier; gardening and loving and being with their families. So by providing a consistent organized decision-making framework we can assist with that. Most hospitals now, do they have a palliative care team like you do at Evergreen? Is that increasingly part of the healthcare mix, and how does somebody gain access to that to get that guidance? Palliative care is becoming more common. There is still a growing need for it, and there are a few hospitals in Washington State who have a palliative care program at this time. You gain access to it hopefully through a referral from your physician. We believe that when the physicians make the referral to us we can then begin to team with the physician to enhance the care that is given to the patient. Let me ask a question of Gerri Haynes. So Gerri you do some teaching of medical students, right? Right. So my thinking is that if I were a young medical student, I would be out to change the world and cure people of illness. There is a lot of emphasis on that; figure out what the patient has, and make them better. It must be hard for medical students to grasp the fact that they may not be able to make everybody better and that there is going to be this long term coping, if you will, that a patient and a family may need to learn how to do and manage expectations. So what are some of the things you tell these students? 2
We start with their life experience and talk about have they ever known anyone who has died or had a long-term chronic illness. We talk about what they believe life and death means, and what their role as a medical practitioner might be when they are caring for someone who will have a life that is shorter than they might hope it would be and how they can be excellent at caring for those people, which will be all of us in some ways, or most of us, as they are going through that experience of living through a condition which will shorten their lives so that they learn that there is an excellence that is attendant to that care as well as excellence that is attendant to curative care, and that they can feel the satisfaction of doing a superb job. Healing doesn t always mean curing, and so as they look at themselves as participants in a healing process they learn that healing is not always a cure, but that part of their role as a physician is to be an accompanist to that process. Now one of the things I think particularly of cancer care, but I ve done a lot in multiple sclerosis and other things, and people have pain or various conditions, where people have nerve pain, and yet for so long we ve had a concern that if we give people pain medicine they are going to be a drug addict, but yet pain is a big palliative area of discussion. So where are we on that now, Bonnie, in helping people understand that they can ask for help with their pain, it doesn t mean they are going to be a drug addict and that they can deserve it? I hear the music. That means we are going to take a break because I know this is a complicated answer, but when we continue then, Bonnie and Gerri, what I would like to do is understand the kind of palliative care people really need and deserve with certain chronic conditions and that it's okay to ask for it, and how they can advocate for themselves. We ll do that as we continue on Patient Power. We re discussing and learning more about palliative care far beyond just end of days and maybe hospice care so that people with chronic conditions can get quality care and have a high quality of life. We ll be right back with more of Patient Power. I hope it s a bright sunny day where you are. It is here in the Seattle area today, and I love this time of year. Sometimes we get some rain, but rain makes the flowers grow, and it warms up, and we get the sun. For me this is the beginning of summer. That s the way we think about it here in Seattle because we ll certainly get some rain along the way but beautiful weather here. Hope it is wherever you are. We are discussing with two experts palliative care and understanding what that is. It s not just end of life support to help you be comfortable in your final days. It s living with a chronic health concern so that you have a higher quality of life. So with us are two experts, social worker Bonnie Letinich from Evergreen Health Care in Kirkland, Washington, right outside Seattle, and also nurse Gerri Haynes. Both of them are instructors and clinical professors, teaching either social workers or medical school students about this important issue. 3
Pain Management in Palliative Care Before the break I was posing the question about pain. Don t people deserve to live not in pain? We have traditionally had this concern about addiction; that somebody is going to become a drug addict you know. So Gerri Haynes, talk a little bit about pain management, and do people have to suffer in pain, or should that be something that they can advocate for help for? Pain management has become a science in the last couple of decades primarily promoted by hospice care and the awareness that addiction is not the concern, but living in pain and dealing with a life full of pain is a much higher concern for the patient population that has pain. So physicians now have a mandate to learn good pain relief strategies. Nurses are participants in that as are social workers. We know that not all pain is physical. There is a spiritual or an emotional side to pain that also must be addressed. So having access to good pain relief and the ability to work through the issues that are coming to you is critical. What about the traditional concern that mom or dad was going to become a drug addict? Probably not an issue. Now you teach medical school students though. I m sure they start that way. They say that these are powerful medicines. I mean we had the story that makes the news, you know Rush Limbaugh was taking pain medicine, and getting people to get it for him for his back problems I think. Whatever it is, often what makes the news is somebody abusing these medicines or OxyContin you know, traded on the street. That s really probably a disservice to so many of the people suffering who really need various medications to get along and where it could be used appropriately, don t you think? Of course it s a disservice, and of course Rush Limbaugh didn t have a terminal illness or a life limiting condition for which he was seeking his pain medicine. There is a substantial difference between people who have the conditions that we are seeing and people who have a different kind of chronic pain, and there are centers for addressing those people who have chronic pain unrelated to terminal conditions. Bonnie, help us understand, maybe you would list some of these conditions we re talking about that you deal with for instance at Evergreen. What are we talking about? 4
We are talking about all sorts of cancers. We are talking about congestive heart failure, chronic obstructive pulmonary disease, ALS and MS at times. Those are some of the ones that we are seeing most often. Okay, so these are serious conditions where certainly your life may be more limited and it is how to have that limit be the least. So when we talk about cancer, and we ve talked about it a lot on our Patient Power program more and more, and we had it just yesterday. A cancer expert was saying, With many cancers now we are making it chronic. Certainly I have met women who are living with advanced metastatic breast cancer, and where years ago they would have been dead, now they are living and going on with their life. It doesn t mean they don t have bone pain or other things from the metastases, so I guess that s what we are talking about, right? Conditions like that where modern medical science has allowed people to continue living, but where there are side effects from the medicine or collateral damage from the disease that needs to be managed, right? Right. I think someone with a recurrent metastatic breast cancer will not probably ever live their normal lifespan. So again we are talking about a patient population who deserves and must have careful attention to their pain problems. Gerri let me ask you a question. That is, so somebody is diagnosed with something super serious. Let s just take the breast cancer example, and you know it becomes advanced, the news is not good, it s not something that appears that can be cured, and so they are terrified. The family is terrified. There have been all sorts of medical interventions; surgery and radiation and ongoing, a whole alphabet soup of medicines and blood tests and things like that. That s all the straight clinical trying to beat back the cancer kind of part of it, and some of these drugs that we have talked about, or even the radiation or whatever is not a free lunch. They are so powerful that there could be other effects on you, and you talked about the emotional effects too, both of you did. So someone who has no training in how to advocate for themselves nor the family; they want to trust their doctor and the healthcare team, and they are a stranger in a strange land; how do they learn the lingo of palliative care, and how do they make sure that they and their healthcare providers are connecting so that they can live as well as they can? Bonnie, do you want to tackle that first? I think that what we are looking at here is an evolutionary process of medicine where we have been able to do such marvelous things technologically; keeping people alive longer and keeping people well longer, that we don t have the language to talk about this time in peoples' lives where they develop an illness that is chronic or progressive, that s a life-limiting illness. How do you talk about that? So what palliative care offers is an opportunity first to sit in someone s home and listen to what they have to say 5
because healthcare is so action-oriented. You know you are working to cure, to fix whatever symptom that comes up, and the appointments are 10 minutes or maybe 20 on a good day. A lot of patients say, You know I had these questions in mind, but I just didn t feel like there was time, or the doctor seemed so busy, or it just didn t come up, or I just lost my perspective. So by going and sitting in people s homes at their kitchen table or in their living room and listening to their perspective of their illness, what they have heard, what they believe is going on, really helps to begin to develop this common language, this way to begin to work together, to team together, to join with them and have a relationship. Part of what we do is offer the willingness to have a relationship. It s a professional relationship, and it is one built on ongoing trust and respect. Wow, this is a whole part of healthcare that I know we hadn t really talked about here, and I can see as more and more people have these serious chronic conditions we have to talk about it. So we are going to learn more from Bonnie Letinich, social worker and Gerri Haynes, consultant and nurse, about palliative care as we continue Patient Power after these messages. Stay with us. The Palliative Care Process Welcome back to Patient Power. You know, think about it, this is the only show on radio or on the Internet anywhere in the world that I know of where day after day we talk about really important health topics. I m just sort of looking through our calendar here. The other day we spoke with a professor from the University of Virginia about health analysts on our healthcare system, and is it broken, and how do we fix it, and a very important book. We spoke about radiation therapy for cancer patients, all the progress that s been made. Today we are talking about palliative care, but much more broadly than just people who are in their final days and in hospice, but how do people with serious illnesses that affect their lifestyle and certainly maybe their lifespan, how do they go on with as high a quality of life as we can? What was really interesting to me is, I think it was Bonnie Letinich, social worker and the coordinator for the Palliative Care Program at Evergreen Health Care outside Seattle, Bonnie you were saying you sort of make house calls, and you actually go into people s homes and have the kind of discussion with them that there just doesn t seem to be time for when they meet with their physician. So how do you go from there? If you make house calls and you get everything on the kitchen table, if you will, of what the issues are; the fears people have, the pain or disability they may be living with; where do you go from there? What happens next? Well just explaining what we are doing here is, let me take a minute to do that. Sure. 6
What we recognize in our country is that we have home health, which offers skilled nursing visits to people who have a skilled nursing need or are homebound. It has to be re-certified regularly, and there are only so many visits a nurse can make given the condition. Then you have hospice which is really by definition the end-of-life care; six months or less to live, although they are changing that in this country and making it more open access, which will include more opportunity to serve people longer and more fulsomely. But in between that, what do we have? We have a system that doesn t have a real service delivery that is consistent. Not because we want it to be that way, just because by nature it has become that way. So you can go to the emergency department, you can go to your primary care physician, but there is no real consistent, coordinated care delivery through that time, through that really an extended gap. That means multiple physicians office visits, so we are talking about a home care coordination program. Right, right. Yes people are very frustrated. I know you get a diagnosis or maybe you are turned loose from very active care, but you are not whole again. So then what? That s where it is really important to go to wherever the patient resides and sit down and listen to what they need. Take the time to do that, and usually within an hour there is a better understanding of what the next steps need to be for the person that we re serving. We do that with a nurse social work team that goes out together so that the nurse can be the eyes and ears for the physician, and look at the pain and symptom needs, and look at any of the physical needs that the patient may have, and the social worker can look at the kind of comprehensive view. There is a real need for communication, and the social worker can help enhance that. There is a real need to talk about, you could say counseling, but it is really not so much counseling as it is being present to people; sitting with people and listening and then developing a plan. That s what the decision-making framework that we are using. Okay, let me see if I can understand. So let s create Mr. Johnson. Mr. Johnson is in his 60s, and he has congestive heart failure. He was treated at your medical center, Evergreen Hospital Medical Center near Seattle, and now he is not going to die. His life might be shortened, and certainly there are things he is fearful that he can t do 7
anymore. There is a lot of medication management going on and trying to figure out what he can do and what aspects of his previous life he can live or are there new things. By criteria, excuse me, he doesn t have the criteria that would have a home healthcare nurse come out and see him. Right. Okay, but he s still worried, still may have some limiting on his life and he and his wife don t know where to go other than they have an appointment with Dr. Smith some time down the road or some regular appointments. So now is that were your team fits in? So Dr. Smith may create an order for us to go and visit this family, and we would call them up and explain what we can offer them, and ask if we could come out and visit with them. When we go out to visit them we have the nurse who will look at him and see where he is at physically, and we will sit down together and listen to what they need. From that we ll create a plan that will support them, because possibly with this diagnosis he is facing his mortality for the first time. Right. That is a monumental, life changing, existential issue, and issue doesn t even describe it or define it. So when he is facing this, and his wife is facing this, and their family is facing this, there are tons of questions. So sitting there and listening to what the questions are, helping them to answer to the best of their ability, and the one thing that is critical I think that our program does offer is we offer a relationship that will help to develop a common language so that we all are communicating with this family and with this patient in a similar way. That is critical. It sounds like it is. It sounds like there has been a big gap at probably many institutions around the country. So Gerri Haynes it sounds like what you are doing is pretty unique, but I know you have been involved with this at other institutions too. It sounds like this would be sort of a national priority because we are going to have lots of people, and we already do, who have these conditions. They are not really home healthcare patients, but they have fears, and they have needs, medical needs as well, that are beyond just treating their specific illness. So is what you are building now pretty unique and groundbreaking? There are some groundbreaking components to it. The intensity of the home care portion is beyond what many programs do. There are programs in the country that are attempting to do this, and at Children s Hospital we helped to establish a palliative care 8
program which is involving home care nurses from other institutions giving some of this care. It s essential that we begin to look at this patient population, and serve them in a way that helps them to understand the options that are available to them. When we do that we also work with the health plans so that the health plans become a member of the care team and the division which has previously existed, which is the us and them division between the health plan or insure, and the patient, family and physician, those divisions go away and we form a care team that is more comprehensive in nature. Reimbursement for Palliative Care Okay, so that really relates to my next question. Can we get health plans to pay for this? Good question. We did at Children s under a Robert Wood Johnson Foundation grant. The health plan participants were very pleased with this. What Bonnie is doing right now, and Bonnie is a genius at this, is trying to find health plans to partner, in this instance set up pilot programs, to make sure that other people understand that this is at least cost-neutral and very likely cost-savings and builds on patient, provider, family and health plan satisfaction. Bonnie, help me understand that. So if you are a genius at that though, to me it looks like social workers and nurses are making house calls and there is a lot of time spent and there is writing the plan. How can it be cost-neural? How is it the right thing to do but yet from a business point of view? If you look at the utilization of an emergency room visit, which can t be under a couple of thousand dollars each time you go, and you look at sending a nurse and social worker out to a home to assess what s going on and help the patient to get a walker because you realize when you are sitting at the kitchen table and they get up to walk around that they really need a walker, and that by calling the physician s office right then and saying, You know this patient would really function much better with a walker, and it might help them not to fall and end up in the emergency room.' We ve got to take a break Bonnie. I get it, I understand. Okay, we are going to talk more about this as we continue on Patient Power and understand the benefits and the broader definition of palliative care. We ll be right back. I love doing Patient Power because I think I can tackle some issues that you just don t see in the media, and I ve been in the media a long time, but as I become a patient I talk to people, and I feel their pain. I've felt my own, and I know how important this is. 9
Finding Services As we have been discussing today, there are a lot areas of healthcare that need to be improved. We are really good on some of the medical stuff; the technology is terrific, the art of people in many specialties, but really when somebody is diagnosed with a serious chronic condition that may be shortening their life and affecting what they can do in their life, and beyond the sometimes pretty short doctor s appointments, how do they get support? They have really been very innovative in the Seattle area where I live, and two people who have been involved are our guests today, social worker Bonnie Letinich from Evergreen Health Care and then nurse consultant Gerri Haynes who has been very involved in the Evergreen program and others as well. They have worked together. So ladies, people listen to this and they say, Okay, I am not sure how I get this wonderful service, if it exists where I live, or if they are at your medical institution. How do I get it going for me? I ll just pose an example. So I have done an earlier program with one of your physicians there who deals with some of the sickest people, Tony Yan, who is a hospitalist, as you know. So he is dealing with people in intensive care and the families, and somebody who has been critically ill, but let s say they are going to get out of there. Then there are going to be concerns at home maybe. Maybe some home healthcare but maybe not. So how does it happen then in your institution Bonnie, and then what recommendations would you make for people so they can see if there are those sorts of services where they live. Well in our institution for instance, using Tony as an example, Tony may see someone in the critical care area that is going to be discharged and go home but has many needs. He would make a referral to our program, and from that we would call the patient and family and set up a meeting if they wanted our service. We would talk about our service first and see if they wanted it, and we would set up a meeting to go to their home. That s one way. When people hear about our program they can always call us and chat with us about it and get literature from us, and read about the program, and then go to their primary care physician and talk with their primary care physician about our program. We can talk to the physician too. Part of this is educating everyone about what our service is so that they can then utilize it. Outside of the area people are welcome to contact us, and we ll send them information, and they can talk to their physicians about it. It is just important that we bring the physician into the team so we can all work together. Now Bonnie and Gerri, I imagine you must give speeches about this. I don t know if you go to some national conferences, but if there might be a similar program or one with some of the aspects in New York or Chicano or wherever somebody may be listening, what is the lingo that somebody uses, a patient or a family member, to describe this so 10
that they can see whether it is available? Do they say, Is there a palliative care program that you have available? or Is there a palliative care consultant? Gerri what do they say? Yes, that s a good question. They would ask for a palliative care program or a palliative care service or a palliative care consultant, which is separate and prior to hospice care, because there are places that integrate palliative care and hospice almost as the same entity and what we are talking about is something that is free of the six month or less criteria of hospice and is maybe years of service rather than months of service. Again I think I have done programs over many years with people with multiple sclerosis, you know diagnosed in their 20s or 30s, in the prime of life. While it may ultimately shorten their life, maybe not, but it certainly could lead to disability, some pain, you know fatigue; a constellation of different things that can come with MS and some uncertainly about how medicines are going to work for them or not, so it is terrifying to someone in that situation. It is terrifying for their family and their loved ones and the uncertainty of it. It seemed like in that instance, and in so many others, your program can make a real difference. Bonnie, I m sure that you get testimonials of people who just feel comforted when otherwise they just felt adrift. Yes. One day I was sitting with a family and the wife who had breast cancer, and it had metastasized to the brain, and she was not clear all the time in her thinking. She turned to her husband and she said, Now why are we involved with palliative care? His response to her was so beautiful. He said, You know, it s a jungle out there, and palliative care helps us blaze the trail through the jungle, and she sat back and said, Ah yeah, that s true. It had been a jungle for her. It had been four-and-a-half years of traversing the medical care system, and by bringing us in at the final time of her life, the final about four or five months, we were able to really work with her and her family to develop support and communication, and bring in hospice at a time that was earlier than when they would have originally brought in hospice. That s a beautiful statement and benefit, and Gerri I know you have worked a lot with children too. So that child may still have a pretty long life. Yes, absolutely. So there we may not have the short form on time frame but there are definitely going to be some needs beyond just the straight treatment of their illness or the visits to their neurologist or gastroenterologist or whoever, cancer specialist. So it would seem like there that might be a long-term relationship, but it could make a tremendous difference for that kid and that family. 11
It can be a long-term relationship because it may be a long period of time when there are not very many visits, but people then recognize that they have access to somebody who can come back on a regular basis or an as-needed basis to help them sort through maybe a question that has developed. We do a process on a format of decision making that we give to the family on paper so they have it to review, and what we have seen with children who have that process repeated, maybe at three-month intervals, is that families who develop sort of the sense of unease because things are changing and they are not aware of just exactly how things are changing, once they see those things documented on a piece of paper and they have that paper to review, begin to relax and understand what s happening and develop language to describe the feelings and the process. It s really nice in that situation. I bet it is. Well I want to congratulate both of you on the work you ve done, and I hope it kind of gains steam more locally and certainly nationally because as you describe, it really fills a gap. I know it is one that patients know about and families know about, but I don t know that our healthcare system has really addressed it well yet. So you two are the visionaries, and I really want to congratulate you; Bonnie Letinich, coordinator of the Palliative Care Program at Evergreen Health Care in Kirkland, Washington and nurse consultant Gerri Haynes. Best to you in what you are doing with all your work Thank you. Thank you. Ladies thank you. Now if they want to get in touch and get more information is there a phone number you want to give? Let s be sure to do that. Sure, 425-899-3265. Okay, 425-899-3265, right? Right. Again it s Evergreen Health Care. Folks can look at www.evergreenhealthcare.org as well. As always, Patient Power tries to cover important ground for you and your families. The replay will be available on our website; it will be on www.healthradio.net and also on www.patientpower.info so take a look. As always, remember as we see again and again, knowledge can be the best medicine of all. Have a great day. We ll be back tomorrow. Andrew Schorr signing off. 12
Please remember the opinions expressed on Patient Power are not necessarily the views of Evergreen Healthcare, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. 13