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New Medicare Program To Allow Some Hospice Patients More Treatment Choices

April 8, 2014 1:31 p.m.

William Mitchell, MD, is a medical oncologist and the director of palliative medicine, at the UC San Diego Health System.

Suzi K. Johnson, MPH, RN Vice President Sharp HospiceCare.

Related Story: New Medicare Program To Allow Some Hospice Patients More Treatment Choices


This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

MAUREEN CAVANAUGH: This is KPBS Midday Edition, I am Maureen Cavanaugh. A gap in the insured care available for people with terminal illnesses may be closing. Medicare of them last month that will offer grants to thirty hospices across the country to test combining hospice care with curative treatments like radiation and blood transfusions. This series of reports on KPBS last year, an iNewsource reporter found without Medicare support writing curative care to hospice patients could break a hospice providers budget. The report also found that writing curative care can give dying patients a few more good weeks or months. Would like to introduce my guests Doctor William Mitchell and oncologist and director of palliative medicine at UC San Diego health system. And Suzi Johnson is a vice president of Sharp HospiceCare, welcome to the program. Doctor Mitchell, this experiment by Medicare to test out outcomes combining hospice and curative care, is that something doctors have been waiting for?

WILLIAM MITCHELL: Certainly we frequently see patients stuff with very difficult decisions. Trying to decide between ongoing treatment for their disease, or illness, and support that comes with hospice. The way that Medicare laws are written, patients cannot get both simultaneously so there's a difficult decision, which one is most valuable in which one will be most health helpful, and patients struggle with that.

MAUREEN CAVANAUGH: What kind of treatment talking about, what qualifies as curative treatments? That hospice patients wouldn't be of yet covered under mount Medicare right now.

WILLIAM MITCHELL: The diagnosis is cancer, chemotherapy or radiation, heart failure, treatments to treat the heart failure, and manage the disease itself.

MAUREEN CAVANAUGH: The thing I think it's curious to a lot of people is the fact that they are called curative treatments but if the purchase person has a life-threatening disease or disease that is going to end their life, they're not going to cure or the underlying disease, swear they still referring it to it as curative treatments?

WILLIAM MITCHELL: That is a curious distinction, it probably does not make � I would use the term life-prolonging treatments. Those are typically excluded by hospice benefit, hospices cannot take pay for those treatments.

MAUREEN CAVANAUGH: And it's because of the designation curative that makes it in opposition to the idea, the older idea of hospice care, which is simply giving palliative care and nothing that can be used in another patient to actually work to cure the disease.

WILLIAM MITCHELL: That is absolutely right.

MAUREEN CAVANAUGH: Okay, Suzi tell us exactly what hospice means now, how does hospice care attend to the needs of people who are terminally ill?

SUZI JOHNSON: Hospice use an interdisciplinary approach where we use in news nurse, social worker, hospice aide and spiritual care support, engaging the patient and family, and their own care for whatever time they have left, it could be a day or week's. And even could be years, and believe it or not. Not very often but it could be. It's the disciplinary team working with the care pathway that aligns with patient preferences and values for care for the remaining part of their life.

MAUREEN CAVANAUGH: This is not simply making sure that the patient is not in physical pain?

SUZI JOHNSON: Pain can be described on mineral many levels, emotional, spiritual, physical pain, where the hospice team is an expert is addressing complexity of the human psyche and also the human body. And creating something as palatable and in line with what the patient really wants. Much more than pain management, there are many idiosyncrasies to life's end and both from a pathophysiology perspective and emotional and spiritual and we were to address that.

MAUREEN CAVANAUGH: And as you mentioned what the curiosities and ironic facts of hospice care is that sometimes it actually does work to extend someone's life or in other words, someone is given a very short life expectancy as part of a diagnosis but when they are in this kind of supportive environment, they actually last a lot longer than anyone expected.

SUZI JOHNSON: They do and there is plenty of research out there that illustrates the efficacy of hospice care in terms of creating a longer life and there are a lot of dynamics and that, but what is included and that is when patients come on hospice they stop using the hospital and emergency room as a primary tool for management of care. They are cared for in their home they have less chance of delirium, other competitions that are related to being hospitalized, and also caregiver support makes it fit the difference by the hospice team being in there and supporting the entire family and the caregiver and we have reduced the amount of stress. Creative pathway I think that is one of the things that is really missing in parts of healthcare right now, really laying out a roadmap of what people can expect to have happened with late stage illness and towards end-of-life trajectory, we continue to do traditional treatments strategies that are really no longer effective and I believe that is heart of what Medicare choice program is working to address. To create a conversation for patients and families on different care pathways that they have, but the still choose and we believe that they will choose accordingly when they're given all of the information.

MAUREEN CAVANAUGH: When a patient is presented with a choice that they have been in the past, either to go into hospice care or to remain as an active patient as it were, and continue to undergo treatments, doesn't that sometimes mean that they will spend much of their last days getting emergency treatment at a hospital?

SUZI JOHNSON: Certainly, the decision to continue leopard prolonging treatments means that patients remain engaged with the standard healthcare system. If their disease is severe and their often in and out of emergency room rooms in hospitals and that a revolving doors difficult. It's one thing if it works well and patients are getting generally better, that's do that. But if the illness is such that we can't make it a lot better or the improvements are slow to come, that revolving door at the ER becomes very challenging to go to Doctor visits. If we take the care to them and have better outcomes and satisfaction, then that makes great sense and the way that Medicare is written currently, they are not able to get those services and life-prolonging treatments simultaneously.

MAUREEN CAVANAUGH: Take us through an idea of a patient who has said basically I want hospice care, but let's say that tumor was growing in a particularly bad way and they would like to go and have a radiation treatment, were not going to cure their cancer but make it easier for them to live out whatever time they have left, can they do that now?

SUZI JOHNSON: Certainly they can, there is nothing that this allows that. What I will say as many of those treatments are very extensive and hospice care is not funded by Medicare or insurance companies in a way that makes it possible for them to pay for that. Hospice is responsible to pay for all of the care related to the diagnosis so that radiation would have to be paid for by the hospice. That is very expensive and it's not set up to do that, it was not intended to that. It is intended to help patients at the end of life.

MAUREEN CAVANAUGH: These are the hard choices that hospice writers have to make now considering that this Medicare transition program is just in its earliest stages, is that right Suzi?

SUZI JOHNSON: It is, and we want to give patients the opportunity to not have it be either/or, the patient who has to have palliative radiation should be of the come on hospice and get palliative radiation. This particular program will address some of that and yet there's still more things to be done in terms of how society is really managing people poor and late stage illness. In a way that isn't really engaging patients and families at in decision-making a lot sooner. They may make choices, a lot of times it comes down to risk versus benefit versus burden. Were taught that they vacation keeping some alive, but it may be doing more harm than good in me to sort that out. As a healthcare community we need to do a better job in community that we need to help patients and families learned to ask better questions.

MAUREEN CAVANAUGH: I have referenced reports from last year on end-of-life and she spent a good amount of time on this problem that people and hospices based in choosing whether or not to continue treatments are going to hospice care and she talk to you, Doctor Mitchell and she talked about the story of a woman who was facing a life-threatening illness and San Diego hospice actually provided a very expensive treatment. A drug that cost $4000 a month, to remember that patience story? Can you tell us about that?

WILLIAM MITCHELL: I certainly can, I rumored very well. It was a woman with advanced lung cancer am I met her she was to wheel to walk or speak, and typically we would not consider character therapy are patient like that because it was too dangerous but she had a particular type of lung cancer in which we had a very high expectation of the response to an oral medication that was very expensive and in long discussions with her family, we decided to give it try and the also desperately needed help at home. And in deciding which needed most was the most difficult decision and so we approached sin be San Diego hospice and asked them whether they would be willing to pay for this medication and, I believe that is a big part of why they got into trouble, there paying for expensive things for patients because it was the right thing to do, and they agreed to fund this medication. It was $4000 a month and she went from being stuck in bed and able to speak to sitting up at the table and peeling vegetables and talking with her family, she lived for another eight months and the hospice pay for the drug for another a month at a very high price.

MAUREEN CAVANAUGH: Suzi, this is the hard thing that you're talking about with decisions that have to eventually be made by the medical community and the public at large and the public policy about how to provide treatment for people who are at the end-of-life.

SUZI JOHNSON: Exactly, and there's no easy answer to this. The believe that getting people appeared earlier in his disease trajectory is going to be part of the answer in the long run and bringing the healthcare provider community physicians and nurses and social workers together in more of a team effort with nations and families to really dialog again about what is important to you, your preferences and values, the benefits versus the risks of medication being clear that not every med actually increases lifespan, and execute more harm than good, people feel better when they're on pure medications. They feel better when they have a team of people working with them, I think we're just at the tip of the iceberg with the baby boomer generation moving in to consuming more healthcare resources over time and it's an economic situation. It's a social situation, and we are going to have to come together and do a better job collectively of managing people living a long time with diseases that only forty years ago we died from much earlier.

MAUREEN CAVANAUGH: Hospices introducing our program like this, you're actually working towards that end right now and bringing all of these questions to gather, in a way to make sure that the person involved in these treatments, whatever they are, hospice or curative, actually understands what the situation is every step of the way.

SUZI JOHNSON: We started a program called transitions in 2008, to the home-based palliative care program. In 2007 disease specific care for patients with heart problems, heart disease, people really on the end of life trajectory but are not emotionally ready for hospice or medically they did not meet the criteria, but we knew with some predictability that they would be going in to the last stage of their life. So we created a program introduced this interdisciplinary programs and spiritual care support to provide case management in the home and take the care of to the home and match their lifestyle with medical plan to get patients and families conditioned and prepared for what is coming next. It had really remarkable group results with what we hear over and over again is that we are so glad that we finally know what her care options are and that we are engaging people in their own healthcare and not making default healthcare or reactive healthcare, being much more proactive in helping people really plan and make your bucket list and getting prepared and also, they can get the most aggressive state-of-the-art disease modifying care that they want, but will we typically find is when we start letting out cards for people about what you can anticipate coming next, the most likely make the decisions that are best for them.

MAUREEN CAVANAUGH: I want in this by asking you, considering the strides that you made already, is sharp hospice, will you know if you're going to be applying for one of the Medicare grants to expand the definition of hospice in the test program?

SUZI JOHNSON: We are of value [ CHECK AUDIO ] in it now, I would imagine is doing and I can imagine leaving this opportunity on the table and not giving it a try. I think CMS would be very pleased with our evidence-based results and, the Center for Medicare and Medicaid services, I believe they would find Sharp as a leader and innovative about thinking on how to solve this part of the healthcare conundrum.

MAUREEN CAVANAUGH: All right, I have to leave it there, I would like to welcome thank my guests, William Mitchell and Suzi Johnson. Thank you both very much.