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Diane Meier

Bringing palliative care into mainstream American medicine, Part I

VTR Date: February 8, 2014

I'm Richard Heffner, your host on The Open Mind. And my guest today is Dr. Diane Meier, Director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative care programs in the United States. Indeed, under her leadership such programs have more than tripled in US hospitals in the last decade.

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GUEST: Dr. Diane Meier
AIR DATE: 2/8/2014
VTR: 07/17/13

I’m Richard Heffner, your host on The Open Mind. And my guest today is Dr. Diane Meier, Director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative care programs in the United States. Indeed, under her leadership such programs have more than tripled in US hospitals in the last decade.

Dr. Meier is also Professor of Geriatrics and Palliative Medicine and Gaisman Professor of Medical Ethics at Mount Sinai Hospital’s Ichan School of Medicine in New York.

She has received a MacArthur Foundation “genius award” as well as the American Cancer Society’s Medal of Honor in recognition of her pioneering role in bringing palliative care into mainstream American medicine.

All of which leads me to ask my guest briefly to define or explain palliative medicine for those who may not be familiar with it … and to raise a question to which I hope she won’t take exception: just why has putting palliative care front and center in American medicine been a struggle?

MEIER: Great questions, as usual. So, palliative care is a relatively new medical specialty that is focused on maximizing the quality of life of people living with one or more serious illnesses …such as cancer or heart disease … or kidney problems or dementia and their families to make sure they have the best possible quality of life.

So that means focusing on the symptoms … pain and stress of a serious illness and very much focusing on the family as much as the patient because every patient and family caregiver knows without family patients would never make it in this healthcare system.

Palliative care is typically delivered by a team of doctors, nurses, social workers and others who come together to support the most complex patients through the course of what are often many years, sometimes many decade-long illnesses, to help serve as a quarterback in some ways for them in this very fragmented, confusing patient unfriendly healthcare system that we have here now.

Palliative care is delivered at the same time as all other appropriate medical care. So, for example, if god forbid you were newly diagnosed with a cancer that could be cured, you would receive palliative care from the point of diagnosis throughout the whole treatment and then when your oncologist said “So long, Dick, you’re cured”, we’d say, “So long, call us if you need anything.”

But most of our patients have chronic disease, things that they live with for a very long time. And what we try to do is make those extra years worth having. So that patients and family stay in control and accomplish what matters most to them and that the healthcare system serves them instead of patients and family sort of feeling like they’re serving the healthcare system.

HEFFNER: But that’s the way I would have thought one would describe medicine.

MEIER: And I think in some ways palliative care is rekindling the originating ethos and professionalism of medicine and the healthcare field.

What’s happened since World War II is that the generalist has disappeared in healthcare and all we have now are ever more narrowly defined specialists.

So there’s a specialist for the cataract. There’s a specialist for general ophthalmology, there’s a specialist for high blood pressure, there’s a specialist for heart failure, there’s another specialist for emphysema and yet another if you have kidney problems, and someone else to manage your low back pain and arthritis and yet another person if you happen to develop cancer.

That is the typical situation in the US now. The average Medicare beneficiary in their last two years of life see something like 18 different specialists under Medicare during that time. I mean you would have to be a rocket scientist to coordinate that, to keep that coherent, to make sure that all these people are communicating with each other and not prescribing drugs that have bad interactions, for example.

So we’ve gone from a sort of generalist medical profession where everybody had a family doc … a GP … to a situation now where most people now have a doctor for every organ and every part of their body and no one is serving as a quarter back, except the beleaguered family caregiver.

And what palliative care does is come into that gap and advocate for the patient and the family in this fragmented healthcare system, working along side the patient’s other doctors, making sure that they’re communicating with each other, making sure that what they say is translated in plain English, or Spanish, as the case may be, to the patient and family. And that the doctors understand all of the contextual factors that the often don’t know about.

So, for example, an oncologist might prescribe something for nausea from chemotherapy, without knowing that the patient and the family cannot afford the drug. Or … and not even bothering to think about whether they had health insurance that would cover the drug.

And sending them off to have uncontrolled nausea because they can’t afford to fill the prescription or because they don’t have a car to go pick it up. Or because they’re in a four story walk-up and can’t get there.

So, we kind of try to bring the reality of the patient and family’s real life into connection with the doctors and nurses that are trying to help them.

HEFFNER: It sounds impossible.

MEIER: Well, it’s not impossible, it’s very rewarding because you actually can see how by addressing these issues of transportation or people who don’t speak English or people who didn’t graduate from junior high school and really don’t understand the instructions that were given to them. Or of people who have severe pain or other symptoms. Their doctors are busy focusing on the disease, not the consequences of the disease … that we can actually restore health in a lot of ways. And, indeed, possible …

HEFFNER: You mean the disease?

MEIER: Well, I …what I mean is that if you have a bad disease and you are also depressed, not sleeping, in pain, too sick to eat … you are not well enough to fight the disease and actually multiple studies … about five different studies have now shown that people who get palliative care at the same time as treatment for their disease … as compared to people who only get the treatment for the disease, those who get both, live longer.

And when you explain this to the public, they go “Well, of course, if people aren’t in pain, if their depression is treated, if their families understand what’s going on and their families are getting help and support and the patient feels like they have the information they need and they’re in control, of course they live longer”.

But when you explain that to doctors, they just don’t get it.

HEFFNER: Well, I was just going to say, “Sure when you explain it to the public … we’re the ones who are experiencing what you’re describing …

MEIER: Right.

HEFFNER: … what happens, when you describe it to doctors?

MEIER: Well, first they have to get over feeling like you’re criticizing them. They have to get over …

HEFFNER: You are.

MEIER: Well, not really. Doctors practice as they were trained. You know, if I get a cancer, I’m going to find the oncologist who sub-specializes in my particular kind of cancer if I have to travel across the country to find that person.

HEFFNER: Right.

MEIER: But … because I want somebody who’s expertize is in my particular kind of cancer. But I know that that … I cannot expect that person to pay attention to my depression, my pain, my shortness of breath, my worry about my family, my finances, my anxieties about whether I’ll be able to complete things I’m … I started at work … I don’t expect that person to have expertise in those areas. I expect him to have expertise in my particular kind of cancer.

And, and that’s what’s happened. You know, we’ve, we’ve begun to train people in a very deep way, but not a broad way.

HEFFNER: So then you … and I’ll bet when you were a little girl, you did this, too … you’re spitting against the wind.

MEIER: Yeah, I’m a sort of rebellious type. It’s, it’s not spitting against the wind because it’s actually completely in alignment, what we’re doing is completely in alignment with why people go to medical school and nursing school.

They go to medical school and nursing school to try to help people. And then we put them through a training process and a reimbursement system that is much more about its own survival in some ways, than it is about what’s best for patients and families.

So I … what we’re doing is attracting the best and the brightest among young physicians, young nurses, who are just completing their training. They want to work in palliative care because it’s why they went into the field in the first place … to help people.

And they see how powerful the impact is … of doing simple things like actually not talking so much and primarily listening to what matters the most to the patient and the family.

It’s … there’s tremendous anxiety in doctors about talking about what might happen in the future if someone has a bad disease or helping people know what to expect if its not great news. But actually it’s not mostly about doctors talking … palliative care … it’s mostly about listening. And understanding who the patient is as a person. And what the back story is in the family and what the pressures are that they’re under. What keeps them awake at night. What are the things they’re hoping for? What are the things that cause them the most regret and distress.

And then helping to figure out a way that the healthcare system can help them achieve the things that matter most to them … work with them, pay attention to what matters to them as an individual.

It’s not designed to do that now, but we’re trying to restore that.

HEFFNER: When you say, “it is not designed …

MEIER: The healthcare system.

HEFFNER: The system.

MEIER: Right. The healthcare system is designed in this very sub-specialized organ and disease specific silos … parallel silos that don’t really talk to each other.

And are designed not to look at the patient as a whole person.

HEFFNER: There must be a plus in that design.

MEIER: Yes.

HEFFNER: There must be something very positive.

MEIER: Yeah, absolutely.

HEFFNER: Can you have that and what you’re describing?

MEIER: That’s the whole point. It’s like we don’t want to give up the wonders of advanced American science and technology in medicine. Like I said, if I get cancer I’m going to find the best specialist in that kind of cancer if I have to travel across the country to get to that person. Because I know the quality of my cancer care will be the best anywhere with a sub-sub-specialist.

But I also want a team that’s going to pay attention to everything else that matters to me as a person.

HEFFNER: Dr. Meier, you say you want that.

MEIER: MmmHmm.

HEFFNER: Can you have it?

MEIER: Actually, increasingly you can. As you mentioned in the introduction, in the last ten years or so, we’re now at a point where, if you take the big hospitals, those with more than 200 beds in the United States, and those are the places that take care of most sick people in this country. 90% now have a palliative care team.

So at 9 out of 10 of the major hospitals where people with serious illness go … because that’s where all the specialists are … there are palliative care teams. So one of the reasons I love to come on your show is because the key to getting palliative is demanding it.

Remember your oncologist, your cardiologist, your neurologist probably trained, if he or she is a seasoned, you know, prime of life professional, probably trained during an era when there was no such thing as palliative care. Doesn’t understand it, doesn’t know how to integrate it into his or her practice.

But if you, the patient, or you the family member of the patient say, “You know, I understand from reading The New York Times, or watching TV that palliative care is a great adjunct to what you’re doing and can help me and my loved ones quality of life, and may even help me live longer. Do we have a program here?”

HEFFNER: Do we have a program here in terms of what’s happening to the costs of medical care?

MEIER: Ahemm, so what are you asking?

HEFFNER: I’m asking whether you’re running into, at this particular moment …

MEIER: MmmmHmm.

HEFFNER: … just when you’ve seen what we need …

MEIER: MmmHmm.

HEFFNER: … and for ten years have been working so hard at this and see it growing …

MEIER: MmmHmm.

HEFFNER: … are you running into that wall of … that’s made up of dollar marks.

MEIER: Yeah. No, actually, this is one of those rare events where there’s alignment between the needs of the payers … private insurers, Medicare … the needs of hospitals and health systems and the needs of patients and families.

And I’ll tell you why and I’ll give you a case example. So we have a patient … I’ll call him Mr. B. He is younger than you … 89 years old … he has some dementia, he’s okay if he’s home with his wife, but he can’t go out alone, he tends to lose his way when he’s out alone.

He has bad low back pain from arthritis, that causes him a great deal of distress, whenever he changes position, he’s in a fair amount of pain. When he wakes up in the morning, he’s very stiff and has trouble getting going.

And it’s been really hard to control the pain of his low back without it interfering with his memory and his cognition and his mental status. This man has been in the Emergency Room four times in a six month period. Twice for uncontrolled pain and once for constipation from the pain medicine that hadn’t been recognized and hadn’t been prevented and once for confusion related to unmanaged pain … that is the pain caused agitation.

Each time a crisis happened, his wife would pick up the phone and call the doctor’s office. And each time the crisis happened, of course, it was after 5 o’clock or it was Saturday or it was Sunday.

So what happens, she calls the doctor’s office and there’s a tape and the tape says, “If this is a medical emergency …

HEFFNER: Go to the Emergency …

MEIER: … call 911 …

HEFFNER: (Laughter)

MEIER: … so she calls 911 each time and goes to the Emergency Room whereupon this 89 year old cognitively impaired person in pain is admitted to the hospital. Four times. So you want to guess how much that cost Medicare in a six month period? Hundreds of thousands, if not millions of dollars. For care that should have been delivered at home, should have been … he should have been able to call someone at 5:17 p.m. or Sunday afternoon and gotten advice about how to handle this. But no, the system is not designed to do that.

So does palliative care save money? Yeah, it saves a lot of money. It saves money because it delivers better quality care. So if Mr. B had had someone at the other end of the phone that could have said … could have checked in and said “You, Mr. B … Mrs. B we just started your husband on a pain medicine that might cause constipation, I want to make sure you’re giving him the right laxatives and I need to hear from you in two days if he hasn’t had a bowel movement.” To prevent this crisis from happening …someone who would call back after starting the medicine and saying “How’s it going? Is the pain tolerable? Is he able to move around? How’s it affecting his memory?”

A phone call, a couple of two minute phone calls could have prevented four ER visits and hospital stays. Does that save the system money? A huge amount of money.

Does it improve the quality of care for Mr. B? Dramatically. So the cost savings from palliative care are not its purpose. They are an epi-phenomena, a side effect …

HEFFNER: But …

MEIER: … of better quality.

HEFFNER: … but there are two things I’d like to correct you on … first place … I’m not even 88 yet … give me another couple of weeks.

MEIER: Okay. All right, all right. Sorry, sorry (laugh).

HEFFNER: Two, more importantly … how to put this … you’re arguing to the choir, in a sense … I’m not raising the matter of dollars …

MEIER: MmmHmm.

HEFFNER: … because I’m a tax payer and you’ve got to tell me how it works out not only better for the patient, but better for my pocketbook …

MEIER: Right.

HEFFNER: I’m talking about contemporary realities …

MEIER: Yeah.

HEFFNER: … in terms of …

MEIER: No. Palliative care is paid for … it is … you know … so if I see you in my office and you have high blood pressure, I write a progress note and I submit a bill to Medicare and the diagnosis code is “high blood pressure” and I bill based on how long I spent with you … 20 minutes, 40 minutes, 60 minutes. And Medicare reimburses me.

If you come into my office for a palliative care visit because you’re in pain, or you’re depressed or your family’s falling apart, I will bill for pain or depression or family counseling and Medicare will pay me.

It’s the same as any other doctor’s visit. We get reimbursed the same as any other visit.

How do we pay for the whole team … remember I said it’s a whole team …

HEFFNER: MmmHmmm.

MEIER: … that delivers palliative care. You can’t support the whole team on “fee for service” reimbursement, because only the doctor and the nurse practitioner can get paid for what they do. We can’t get our Chaplin paid or our social worker paid, or our message therapist or our art therapist, or our music therapist … paid for what they do.

Support for those elements of the team comes from the hospital’s operating budget because it is worth it to the hospital to invest in supporting this team, because not only do the patients do better and feel better … they end up costing less because they do better and feel better.

They have fewer complications, their length of stay in the hospital is shorter, their families feel communicated with and reassured. It’s good for everybody. So in most hospitals in the country, palliative care teams are supported by … as the stockbrokers like to say, “a diversified portfolio of support”. So, some of it is “fee for service” billing, some of it is support from the health system or the hospital. Some of it is philanthropy and some of it … we just do it for free.

HEFFNER: Now, why has it been a long hard road to get the medical community to understand that it must change. You must change its training.

MEIER: It’s, it’s a cohort … a generational cohort effect …

HEFFNER: Generational …

MEIER: Yeah. So as I said … most doctors practicing today are Baby Boomers and the generation before Baby Boomers … my age and within 10 years of my age.

None of us have any exposure to the field of palliative care because it did not exist during our training.

Most doctors, and here’s the good news … do practice the way they were trained. That is, if we train you to practice a certain way, you will continue to do that for the next forty years.

HEFFNER: And if the way isn’t what it should be …

MEIER: Right.

HEFFNER: … you still will.

MEIER: Exactly. And the good news is we can change the training and change the practice. The bad news is, is it’s really hard to change physician behavior that is entrenched from training and decades of practice.

And people who have tried to change physician behavior acknowledge that it’s probably the hardest biological system to influence (laugh) on the globe. We’re very certain that the way we’ve always done it is the way to do it.

HEFFNER: Well, your training is so rigorous in the first place.

MEIER: It is, it’s an intense socialization period, it’s … you know, you don’t sleep during many of those years. You’re terrified because you’re dealing with life and death and you know, the … kind of the moral burden of responsibility that you’re carrying. So it’s a very kind of deep socialization process. And people have to believe that what they were trained to do then, is the right thing to do.

Because during your training you’re, you’re terrified, you want to make sure you’re doing right for patients. You accept what you’re taught as the gospel.

HEFFNER: And you’re changing that?

MEIER: Trying. And what we’re seeing is that the younger generations of physicians, people who have been trained in the last 10 years, the last 15 years all trained in teaching hospitals that have palliative care teams. And worked right along side them to take care of their patients. And are much more comfortable working with palliative care teams because they see the benefits it brings to their patients.

They see how much better their patients do. How much better they feel. How much happier the patient and the family are and how much better the planning is for what’s going to happen when somebody goes home from the hospital.

HEFFNER: And rewards? The material rewards?

MEIER: For who?

HEFFNER: For the practitioners.

MEIER: Well, we’re like any … what we call “cognitive” specialists, so we’re not surgeons, we don’t stick things in you. We’re not interventional cardiologists, we don’t do dialysis, we don’t infuse chemo therapy.

That the rich doctors in the United States are the ones who do things to people. They infuse very expensive drugs, they stick needles in you, they cut you open.

In, in our society we pay those people literally tenfold what we pay people who think for a living. And talk to people for a living. Talk to any pediatrician, psychiatrist, general internist, family practitioner, those people get paid literally one-tenth of what most orthopedists, ophthalmologists, plastic surgeons, urologists, oncologists get paid, because they’re procedural specialists.

HEFFNER: Now that’s a reflection, you’d have to admit of our general culture.

MEIER: Yes, it is a reflection and …

HEFFNER: But where from your optimism?

MEIER: The Affordable Care Act, so …

HEFFNER: Tell me about that.

MEIER: The reason that hospital palliative care grew so rapidly in the last ten years and I wish I could say it’s because everyone saw the light that patients needed more compassionate care that was about what mattered to the patient and family.

And certainly that’s a piece of it, if we hadn’t been able to demonstrate that we were able to do that, we would have gotten nowhere. But the real driver was the business case for palliative care, which is that hospitals began to see that with a well-integrated palliative care team, they were losing less money.

We’re still losing money. But they’re losing less money on the very complex high risk patients.

HEFFNER: For real?

MEIER: For real, oh yeah, there’s multiple studies demonstrating that. What there never was was a business case for palliative care outside of hospitals. Until the Affordable Care Act passed. The Affordable Care Act health reform now creates penalties for hospitals and doctors that do not effectively manage the sickest, most complex patients.

So, for example, if I discharge you from the hospital and you come back within 30 days because I didn’t do a good job of making sure the discharge plan was safe and you were going to see your primary doc two days after you went home and that you really understood your medications and were able to say back to me what the plan was and you cam right back ‘cause I had done a very bad job of the discharge … the hospital’s going to be significantly penalized financially for the fact that you came back. I can tell you this is dramatically motivating hospitals.

HEFFNER: Does it …

MEIER: Pay a lot more attention to what happens to their sickest, most complex patients when they go home and therein is the business case for palliative care in the community.

HEFFNER: Would it be fair for me to ask whether it also provokes, stimulates, rouses opposition in the medical profession to Obamacare?

MEIER: No, I, I …

HEFFNER: No?

MEIER: … I think like the rest of the American people, physicians are confused about Obamacare. I think, you know, the fact that the bill is complex, the fact that the bill is the classic exemplar of government sausage making and special interests … hospitals, insurers, pharmaceutical manufacturers, device manufacturers … everybody got in there with their lobbyists and demanded their pound of flesh from the Bill, which is why it is such a complex, difficult to understand Bill and why it’s been so difficult to explain it in plain English to the public.

I think it’s also very difficult for physicians to understand “what does it mean to me?”. And what physicians end up hearing are kind of headlines that are hyperbolic and not balanced and … but if you survey physicians in the United States, 80% believe we need a national health insurance plan. Believe that every patient should have access to healthcare. Eight out of ten doctors think the current system is wrong.

HEFFNER: Dr. Meier, we’re at the end of our program …

MEIER: Okay.

HEFFNER: You’re at such a crucial point now on what you’re saying … would you be willing to stay and do another program?

MEIER: Sure.

HEFFNER: Good.

MEIER: Be happy to.

HEFFNER: Dr. Diane Meier then, (laugh) thank you for joining me today and I look forward to talking to you further at this table now.

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.”

And do visit the Open Mind website at thirteen.org/openmind
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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.