Dr. Diane Meier discusses her new book on dealing with serious illness.
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GUEST: Dr. Diane Meier
AIR DATE: 2/26/2011
I’m Richard Heffner, your host on The Open Mind … and it’s been too long since my guest today, a distinguished professor of geriatrics, medicine and medical ethics at the Mt. Sinai School of Medicine, joined me here…though enough time, perhaps, for her now to discuss with me somewhat hopefully the thrust of a new book she and her colleagues have recently edited on Palliative Care – Transforming the Care of Serious Illness.
Now, when Dr. Diane Meier, the director both of the Lilian and Benjamin Hertzberg Palliative Care Institute at Mt. Sinai, and of the National Center to Advance Palliative Care, was here some years ago, I asked whether her dissatisfaction then with the extent and the quality of palliative care in America didn’t have to do with something of a dichotomy between cure and care in the very culture of American medicine.
She agreed, and I want to ask my guest now whether generally it’s still as difficult for us, as patients and physicians, to hold in our minds at the same time the desire to live as long as possible, along with the desire to live as comfortably as possible. Dr. Meier what’s the situation now?
MEIER: Well, as usual it’s an excellent question. And it has a complex answer. But I would say that we have made progress since I was here last in that there have been published, over the past couple of years, and most especially this summer several studies now showing that patients who get palliative care at the same time as they get curative treatment or disease focused treatment, actually not only feel better, they and their families feel better … they also live significantly longer than people who only get the disease specific care, or the curative treatment.
And many people scratch their heads and say, “How could that be? How could it be that palliative care, care focused on making sure people feel okay, that their pain is treated, that their depression is managed, that their families are supported, that they can reach someone who knows them at 4 in the morning on a Sunday … how would that lead to a longer life? I don’t understand that.”
And yet that’s what the data shows it does. And, I think if you’ve ever been a patient or been a family member of a patient, this would not come as a surprise to you.
HEFFNER: Well, now are you talking about hospice, or palliative care, generally.
MEIER: Okay, so that’s another excellent question. Hospice is a form of palliative care that is paid for under a Medicare benefit, that is strictly limited to people who have a prognosis that is a life expectancy of less than six months.
And in addition to having to have a predictable and short diagnosis in order to get hospice … you, the patient, have to agree to give up regular Medicare, or regular insurance coverage that’s focused on prolonging your life.
And, as a result, most of the time people are very close to the end of their lives by the time they choose hospice because of those restrictions.
Palliative care in contrast has no such restrictions. That is people can get palliative care whether they have 10 years to live, 10 months to live, 10 weeks to live.
In that there’s no requirement that you give anything up in order to access it and there’s no requirement that you be “dying” in quotes in order to access it.
That said, both forms of palliative care … hospice palliative care and non-hospice palliative care … both have been shown to prolong life in the studies that have looked at it.
And that goes counter to the myth that’s out that what hospice is what you do when you’re ready to give up. Hospice is what you do when there’s nothing more to be done.
In fact, if we’re scientific about how we recommend treatment to our patients we would say we should be recommending hospice to people much earlier because it has been consistently associated with a longer life in people who get hospice than in similar patients who don’t get hospice.
HEFFNER: Can you? Could you?
MEIER: Could you … what?
HEFFNER: Literally, legally or medically or with payment coming …
MEIER: Get both at once?
MEIER: So, that’s the more complicated question, of course. Because right now, under the regular Medicare hospice benefit you cannot get both at once.
The new health care reform law has a demonstration project in it called the “The Concurrent Care Demo” which will allow, in fifteen sites across the country, an experiment, testing whether patients receiving both hospice and life prolonging or curative treatment at the same time, as compared to a control group that only gets hospice without continued life prolonging treatment … whether that group has better quality of life and what their length of life is and also what their costs are … because, of course, the government is very concerned with the out-of-control-costs among seriously ill people in this country.
So we’ll have a scientific answer to that question, but not for several years. In contrast, non-hospice palliative care, regular palliative care … that is you can access the day you’re diagnosed or at any point in your illness … has clearly been demonstrated to be associated not only with better quality of life, but also with very substantial increases in the length of life … among cancer patients … that’s the group that was studied.
And I think that’s a very important message for the public to understand, that it’s important for the public to know that they should be demanding palliative care from the point of diagnosis, not only because it will help them feel better through the treatment and through the struggles to deal with the illness, but it will also give them a longer life.
HEFFNER: Will it be paid for by medical insurance?
MEIER: Yeah. Palliative care is paid for the same as any other medical visit is paid for … I’m an internist if I … if you’re my patient and I see you for high blood pressure, I bill for seeing you for high blood pressure.
If you’re my patient and I see you for a palliative care consultation, I bill Medicare for that palliative care consultation. It’s the same. Ahmm, palliative care is paid for the same as any other medical specialty is paid for.
HEFFNER: Why isn’t it recognized as such by enough people?
MEIER: Well it is a … it is a social change process and a diffusion of innovation process. Ten years ago palliative care didn’t exist, to speak of in this country.
Now 80% of large hospitals in the United States have a Palliative Care Program, but it is still a work in progress because have, having a hospital palliative care program is not the same thing as you being able to access palliative care when you’re living at home, for example.
And we have a ways to go to make palliative care available across the continuum and in all settings … home.
HEFFNER: When you say it’s not the same, tell me what you mean?
MEIER: Well, if you think about …
HEFFNER: In the hospital or at home.
MEIER: If you think about … if you think about a serious illness or a chronic illness … where does the overwhelming majority of it take place?
HEFFNER: Unfortunately, in the hospital.
MEIER: No. At home.
HEFFNER: At home?
MEIER: Yeah. 99% of a serious illness is experienced at home. Only a tiny fraction of the illness is cared for in hospitals. That’s where all the spending is; that’s where all the policy focuses.
But from the patient and family standpoint, the illness is unfolding at home, for the vast majority of people. And most of the time lived with that illness or more accurately … illnesses, because most people have more than one … occurs at home.
And so it’s very important to bring the care that people need to where they are.
HEFFNER: How do you do that?
MEIER: And not, not to force them into hospitals, because that’s the only place they can get care.
HEFFNER: And going to hospital is bad for your health.
HEFFNER: You know that.
MEIER: That’s absolutely true. Going … and I actually believe that one of the contributors to the longer life in the study that was published this summer ….
HEFFNER: Yeah …
MEIER: … among the palliative care people is that they were much less likely to be hospitalized. They were able to stay home and get their care needs met at home and while I believe that some of the longer life is because of the excellent care that the palliative care team gave to these patients, some of it, I believe, is due to the fact that these patients did not have to go to the Emergency Room … did not have to go to the hospital and didn’t face all the very serious risks of being in the hospital that are … have been well documented.
HEFFNER: You say the palliative care team …
HEFFNER: Would you describe that.
MEIER: Well, palliative care is, is team sport. That is people with serious advanced and chronic illness have a number of types of needs.
They have medical needs such as needs for treatment for pain or shortness of breath or depression or difficulty sleeping. They also have need for psycho-social support by which I mean people who will listen to what the experience of the illness has been like … how it has affected day to day living … how it has affected hopes and plans for the future … how it has affected family relationships and relationships with the work world.
And that requires people who have some training in counseling and listening. And then in addition there’s a great deal that has to do with ability to walk or ability to remain mobile or ability to be comfortable in beds or chairs.
And then very importantly there’s a strong spiritual component. That is, most of us when faced with a serious or life threatening illness experience that as an existential and spiritual blow as well as a strictly medical experience.
How could this have happened to me? What about all my plans for the future? What can I do to make this better?
And in some of my patients who are quite religious … “Why did God do this to me? I’ve been a good person.” So it often brings with it a sort of spiritual or existential crisis that requires people trained in helping people to think through and articulate their feelings about the meaning of the illness and its implications for them as a person. And their thoughts about their future and their thoughts about their life. And their regrets and their hopes and the things that they’re proud of and the relationships that need healing, perhaps.
And so a team … a palliative care team is a doctor, a nurse, usually a nurse practitioner with advanced training, a social worker who can help with practical needs at home and a chaplain who can have safe conversations with people about issues like meaning and purpose.
HEFFNER: Safe conversations …
HEFFNER: … nice expression.
MEIER: By safe conversations I mean that it is often difficult or uncomfortable for patients and families to talk, for example, with a doctor about spiritual or existential questions related to illness because they want the doctor to focus on the disease. They want the doctor to focus on helping them live as long as possible and as comfortably as possible and there’s a … there’s a sense that this really isn’t the doctor’s bailiwick … not really appropriate to talk about with the doctor. And also a fear of distracting the doctor from his or her more important daily tasks, focused on the disease.
Whereas when a trained hospital chaplain or other counselor comes into the room, it’s clear what they’re there for and what they’re trained to do. And they’re able to open up a whole different area of reflection and expression and articulation of feeling that other members of the health care team are not so good at.
HEFFNER: You know you have just straightened me out in my thinking because I … I think I thought …
HEFFNER: … that the training of a palliative care doctor, physician should include what you obviously feel patients feel better about when represented in the form of a spiritual, a traditional spiritual advisor …
MEIER: I think that …
HEFFNER: Not true?
MEIER: … I think that’s the ideal. The real sometimes doesn’t have the resources …
MEIER: … to include a full team of the type I described and there are plenty of palliative care programs that have a part-time doctor and one nurse and they’re lucky if they can pull in a social worker or pull in a hospital chaplain when needed and right … that’s what I meant by the development and the integration of palliative care as a routine aspect of the American health care system is a work in progress.
We’re much further than we were ten years ago, but we’ve got a ways to go.
HEFFNER: But it does mean then that you want the palliative care training in medical school
MEIER: Absolutely. And it’s interesting because New York State just passed a law … last month … that requires physicians to talk with patients about their options during serious and advanced illness … as if somehow passing a law requiring physicians to do something actually could have any impact on anything.
I mean physicians don’t follow rules like that. And physicians do, quite appropriately, what they were trained to do.
What we were trained to do, what we saw our mentors doing, what we learned during rotations in the hospital, is what we then go out and practice.
That’s the good news because if we changed the training, if we shift the training to focus on things that are more important and that would deliver better quality care … physicians will go out and do what they were trained to do.
But most physicians were not trained in the basic principles and competencies of palliative care. Because it didn’t exist in most hospitals ten years ago.
HEFFNER: Again, what’s the percentage now of those who are being trained now?
MEIER: Well, as I said about … the larger hospitals … about 80% have a program and those larger hospitals also tend to be the teaching hospitals. And tend to be the hospitals that are linked to medical schools.
And so, increasingly, young people graduating today have had significant exposure to the work of a palliative care team.
Again, it’s variable. In some medical schools like mine at Mt. Sinai School of Medicine every student has a mandatory rotation on a palliative care consultation service.
I wish I could say that that is the standard of practice across the country and I hope it will be before I retire.
But we’re trying to move in that direction to make training in the skills of palliative medicine something that you can’t graduate from medical school without demonstrating competencies in.
That you can’t finish a medicine or pediatrics or surgery residency without demonstrating skill and knowledge in this field.
Because patients need you to have those skills and knowledge. And right now we’re not there yet, but we’re moving in that direction.
HEFFNER: I was impressed with this definition of your book Palliative Care: Transforming the Care of Serious Illness and in your first chapter you gave a definition of palliative care … the goal or at least stated the goal at length and if you don’t mind it, I’d like to read it for the audience … “The goal of palliative care is to prevent and relieve suffering and support the best quality of life, the best possible quality of life for patients and their families regardless of the stage of the disease or the need for other therapies.
“Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making and providing opportunities for personal growth.
“As such it can be delivered concurrently with life prolonging care or as the main focus of care.”
It’s that concurrently or …
HEFFNER: … that gets me and I think puzzles a lot of people.
MEIER: MmmHmm, what do you mean? What, what’s puzzling about …
HEFFNER: Well, I think we’ve thought of something different. You straightened it out as we began here …
HEFFNER: … but I think the thought has been either there is palliative care which is taking care of us to feel better …
HEFFNER: … and our families as you note ….
HEFFNER: … or searching for a cure.
HEFFNER: … and you’re saying … again … that it can be both.
MEIER: Yes, I think we are stuck in an old concept of what domus means in our society.
Nowadays … it used to be even fifty or sixty years ago most people had a short illness and then died. Because there were no antibiotics, there were no cardiac cath labs, there was no angioplasty … you had a heart attack, you died.
You developed lung cancer … you died within a relatively short period of time. You got pneumonia or meningitis or a bad urinary tract infection that spread to your blood stream, you died. We didn’t have antibiotics. People did not live to their eighties and nineties with chronic disease … even fifty or sixty years ago.
We have totally transformed the nature of what it is to be old, the nature of what it is to live with illness … thanks to modern medicine.
Things that used to kill you quickly less than a hundred years ago, we now live with for years, sometimes decades, as chronic illnesses.
So what we need to understand that most of what medicine does is not cure … most of what medicine does is help you manage chronic disease.
We can’t cure diabetes, we can’t cure a stroke, most cancers cannot be cured, kidney failure cannot be cured. These are things we now know how to manage and help you live with or in spite of that illness. We can certainly prolong your life with that illness, but we don’t cure most of what we contend with.
We, we cure bacterial infections … most of the time, but that’s not what people die of anymore, they die of chronic disease that they’ve often had for many, many years before death.
And … so when you start thinking about the fact that most of the health care system and most of the health care dollars in this country are spent taking care of people with more than one chronic disease actually, most of the dollar goes to people with multiple chronic diseases.
Then you start thinking “Okay, so we’re trying to help people manage as well as possible with chronic disease … and that’s cancer or heart disease or Parkinson’s disease or dementia” … these things go on for a very long time.
We gotta make those extra years worth having. Because if those extra years are completely miserable and disabled and stressful for everyone you have to ask “To what end?”
So what we’re saying is chronic disease management must include both the skills of helping people live as long as possible …
HEFFNER: What about those who are say …
MEIER: … well … as well as possible.
HEFFNER: But what about those who are saying to us “We can’t afford to do that”.
MEIER: Well, ahmm … I would, I would ask them to look at the things that Medicare pays for … like artificial hearts, for example … at a cost of about half a million dollars per patient.
And then look at things that perhaps Medicare should be investing in more, which is the quality of life of its millions of beneficiaries.
But, in addition to showing that palliative care improves life, lengthens life … lots of studies also show that it reduces costs. And as, in the study that I mentioned to you earlier … the most expensive place to get your care is where?
HEFFNER: In the hospital.
MEIER: In the hospital … and if palliative care as an intervention is something that keeps you well enough and safe enough and confident enough about what you need to do, you and your family … that you don’t end up calling 911, you don’t end up going to the Emergency Room and then getting trundled upstairs to the hospital … it saves a lot of money.
That is not our intention, our intention is to improve quality and length of life, but the consequence of doing that is that you don’t end up in crisis and in the hospital. And as a result it saves a lot of money.
HEFFNER: It doesn’t save a lot of lives, though, does it?
MEIER: Well, it prolongs life. I mean I can tell you stories of young people with curable cancers who received palliative care from the point of diagnosis and then got very aggressive, difficult chemotherapy, bone marrow transplantation, other types of treatment that caused a lot of physical, emotional and spiritual suffering not only for these young people, but for their families … as you can imagine … and the fact that they got palliative care from the point of diagnosis … I would argue helped them get through a very, very difficult time and helped them get to the cure.
But the majority of people who need palliative care and who get palliative care, and this is another triumph of modern medicine … are old … they’re not mostly children, they’re not mostly young people.
Most people who are sick are old. And most people who are sick have multiple chronic conditions. So cure again is not an achievable goal in that patient population.
Living as well as possible with chronic disease for as long as possible is an achievable goal.
HEFFNER: Do you think that the health program that went through the Congress and was signed by the President … if it stays in place and we know it’s threatened and I hope there are enough people who realize that it’s threatened … will accomplish some of what you want accomplished?
MEIER: The Health Reform Bill … the accountable care act … primarily it’s primary impact is on increasing access to care. It insures an additional 30 million people of the 50 million currently uninsured in this country.
Everything else that it does is minor in comparison to that increase in coverage. As, as President Obama himself said, it’s an insurance reform bill more than it’s any other kind of reform bill.
However, there are many experiments embedded within the Bill. Abilities to test different ways of delivering and paying for care with a goal of improving the quality of care that patients get, the quality of their experience, their quality of life, their sense of control over their illness and also reducing this runaway train in terms of health care costs.
If health care costs continue to rise at the rate that they’ve been rising … 100% of state budges across the country will go to paying for health care, there will be no money left for schools, roads, post offices … anything that’s publicly paid for will have to go away just to feed the monster of health care costs, unless we figure out how to get a handle on it.
And this bill does nothing to address that. It … aside from allowing for experimentation using pilots or demonstrations that will tell us whether this range of different models actually are effective, help people, improve quality and also get a handle on costs.
HEFFNER: To you knowledge are these various small programs, experimental programs of real value? Can they be of real value?
MEIER: I am hoping they will be of real value and it is a matter of measuring the right outcomes, it’s very important to measure the experience of patients and families and to talk about the impact of these different models through the prism, through the lens of the experience of the patient. Otherwise they will be tossed as efforts to ration, or as efforts to take resources away from old people.
In fact that is not their intent, but it is easy to see how they can be demoguged in that way. So it’s critical in my view to pay close attention to the experience of patients and the experience of their families in these different models and to compare them so that we are leading with attention to patients and families and their experience before we talk about any other outcomes.
HEFFNER: My hope that that the next time you come back you will have … again … a, a report on some progress.
Dr. Diane Meier thank you so much for joining me today.
MEIER: Thanks for inviting me.
HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time. Meanwhile, as another old friend used to say, “Good night and good luck”
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N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.