Bringing palliative care into mainstream American medicine, Part II

I’m Richard Heffner, your host on The Open Mind. And this is the second of two programs with 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 here in New York.

My guest 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 led me last time to ask my guest briefly to define or explain palliative medicine for those who may not be familiar with it … and to answer a question to which I hoped she wouldn’t take exception: why, indeed, has putting palliative care front and center in American medicine been such a struggle?

Well, this time I would ask if she is satisfied with the degree to which mainstream medicine now embraces palliative care. We’ll get back to where we ended up last time, Dr. Meier, but … are you satisfied with that general proposition?

MEIER: Of course I’m not satisfied … no. I, I will not be satisfied until … to put it in three short words … there’s palliative care everywhere.

That is wherever there is a seriously ill child. Or newborn. Or young adult. Or middle aged person. Or older person.

Whether they’re in their doctor’s office, whether they’re at home … in school … in a nursing home … in a hospital … in a cancer center. Receiving care at home.

All of … all healthcare for people with serious, challenging illness, should be informed by fundamental principles of palliative care. Asking what matters most to the patient and family. Developing a care plan around what matters most to the patient and family. Listening to what keeps them awake at night, what causes them pain … stress … suffering of any kind and addressing it.

All of healthcare should be informed by these principles and we are a long way off from that.

So, unfortunately, I’m not done and I’m not satisfied with where we’ve gotten to … in terms of scaling palliative care to inform the practice of medicine and healthcare delivery in all settings in the United States.

We’ve come a long way in hospitals … but we’re just now beginning to start spreading this model of care outside of hospitals. And after all, most people with serious illness spend 99.9% of their time at home. Not in hospitals. So we really need to bring the care into the community.

HEFFNER: But, of course, that leads me to ask something that’s puzzling me. You said in the last program that palliative care responds to … in a sense … reflects the ambitions, the hopes, prayers of the people who go to medical school today.

MEIER: MmmHmm.

HEFFNER: Now you’re going to change their training so that the training corresponds to this “goodness”, essential goodness and care for people in them.

MEIER: Right.

HEFFNER: All done in a fifteen minute interview at a doctor’s office? Or are you talking always about teams?

MEIER: Well, it depends on the needs of the patient. So if, for example, I saw someone today whose wife has a new diagnosis of Alzheimer’s disease. And I could have brought the whole team in, but he and I spoke at some length about what was ahead of him for the next decade, decade and a half. How he needed to prepare himself for the long haul. And to pace himself so that he could handle the long haul and understand that when she asked every day … what day is it … and he had just said twice before in the last five minutes … “it’s Wednesday”, that it’s because she genuinely could not remember what he had said to her five minutes ago.

To help him think about how is he going to pay for the care she was going to need at home because he doesn’t have long term care insurance.

To help him think about mobilizing his two adult children to help him, so that there’s a team around him and his wife to help him get help with the financial planning that he has to do, so that he can pay the rent and buy food and take care of himself while still making sure that she has the care she needs.

There’s a lot of things he needs to start thinking about. That was just me. Was that palliative care? It absolutely was. I was asking him, you know, what were his greatest worries, what were his greatest fears, what were the things that made him feel at least able to go forward … ahmmm … you know he expressed a great deal of despair and concern about whether it was worth it to go on living. He felt he would go on living because he had to take care of his wife.

But if that wasn’t the case, confronting what he has to go through with her in the next 15 years … so he’s depressed. He’s despairing. That was just me.

However, I referred him to a social worker on my team who’s going to help him understand what the insurance options are and the financial options are … for him … when his wife needs a person with her, either at night or 24/7. How is he going to pay for that? He didn’t understand that Medicare doesn’t pay for that. And his regular …

HEFFNER: Medicare …

MEIER: … insurance doesn’t pay for that. So, you know, this is an intelligent, educated 78 year old man who didn’t know that, that Medicare doesn’t cover personal care for someone who needs it.

HEFFNER: You had told me, in our last program together that Medicare will cover the time it requires you …

MEIER: It, it will pay for my time with him … it will not pay ….

HEFFNER: But what about the social worker?

MEIER: … it depends on where he sees her. If he sees her in her office, she can bill “fee for service”. If he sees her in the hospital … I happened to see him in the office … so … not in the hospital … then her salary is supposedly covered by how Medicare pays for the hospitalization.

But … so it depends on the needs of the patient. We have, for example, patients now in the hospital who are undergoing a very difficult procedure for cancer called a bone marrow transplant. Where you’re basically like the “Boy in the Bubble”. You’re … we, we kill all your normal bone marrow in order to infuse new, healthy bone marrow. And it’s a very difficult process but it has led to a number of cures of what used to be universally fatal leukemias, lymphomas, other diseases.

What palliative care does for those patients is massage therapy, spiritual support, music therapy, art therapy, pain management, support for the families … they don’t … it’s much more about kind of helping people maintain their spirits and their sense of connection to a life worth living … for that kind of patient.

For the person I that I saw this morning it was … he needed a doctor to help him understand what the normal course of Alzheimer’s is, so that he could prepare himself and his family for what was going to come.

HEFFNER: Now going back to the matter of the willingness of the medical profession to accept what it is you know that is needed in terms of palliative care …

MEIER: MmmHmm.

HEFFNER: … you’ve said that the new generation … this is why they’re going into medicine.

MEIER: Well, I mean, that obviously there’s a bell curve in medicine like in any other biological system … so some people go into medicine because they want to cut people, they want to do procedures. And we need those people. We need good surgeons who love surgery. We need all kinds.

HEFFNER: But there is a group …

MEIER: There … we are attracting to train in palliative medicine people from the best Ivy League medical schools and residencies in the country because they … when they see it practiced during their medical school training and their residency training … they say, “Yeah, that’s why I went to medical school, I want to do that for a living”. It is so gratifying to me.

HEFFNER: Do they stay there …

MEIER: Oh, yeah.

HEFFNER: … psychologically speaking.

MEIER: It’s … you know everyone thinks it must be devastating work and must be so hard … and it is … it can be emotionally challenging and difficult work.

But I will tell you it is much harder to see people suffering unnecessarily and having it not addressed. It is … the cognitive dissonance of seeing vulnerable people not get the care they need … its much more difficult … the moral distress for doctors and nurses … seeing patients get inappropriate, harmful, burdensome care … is much greater than that the moral stress of helping people who are confronting a serious illness.

Most people in palliative care are very happy because they really get up in the morning, knowing they’re going to go to work and really help people that day. And they go home feeling good about what they did.

HEFFNER: How does the palliative care pattern and the needs it has and the demands is draws upon its practitioners, how does that relate to the movement toward hospitalists?

MEIER: MmmHmm.

HEFFNER: Here it seemed to me, you’re taking me away from my general practitioner who, to a certain extent at least … reflects the, the needs that you’ve been describing. And puts me in the hands of people in the hospital who don’t know me at all.

MEIER: Well, the hospitalist model is an example of a kind of sub-sub-sub specialization, fragmentation and silos that we talked about in the earlier show.

The recognition that the GP in his or her office, who has 50 people in the waiting room, does not have the time and attention to really focus on the sick people in the hospital, because he’s got to get back to the office and deal with the 50 people in the waiting room.

And so there is this recognition that things didn’t get done quickly, things didn’t get done well, because the people managing patients in the hospital were distracted by their office responsibilities.

So it made sense from the standpoint of the immediate need to meet patients needs are in the hospital today … to have people who are experts in hospitals. Who know Joe in radiology and can pick up the phone and say, “Joe, I got this patient, he needs a CAT scan this morning, can you get him in?” and has the relationships, knows how to work the system on behalf of patients. That the primary doc in his or her office doesn’t have time to do.

But the downside is … somebody like you or me … who has a long history with our doc, that we’ve been seeing for 10 or 20 years is suddenly being cared for by somebody whose only job is to get us through that hospital stay and out as quickly and as cheaply as possible.

Who doesn’t know, you know, about our history of depression or the fact that we have a sibling who died of the disease 10 years before, so we’re terrified.

Or doesn’t bring that kind of whole person nuanced approach. So there’s a price. There’s an advantage and there’s also a disadvantage to hospitalists.

HEFFNER: How would you … talk about how they weigh out.

MEIER: It depends on how it’s done … like everything else.

HEFFNER: What do you mean?

MEIER: If hospital medicine is practiced in the optimal way, there is very high quality communication between the hospitalist and the primary doc. There is direct telephone communication that occurs at the beginning of the hospital stay, in the middle of the hospital stay and after discharge, so that the hand-off is pure, is high quality.

When people get too busy, when things get crazy, when the volume pressures in the hospital or in the office are too high, those are the first things that get dropped.

HEFFNER: You, you probably would be quite familiar with this. The first time that the word “hospitalist” was heard on the Open Mind which was about a year and a half ago … I said, “What?” …

MEIER: (Laughter)

HEFFNER: … and the doctor explained to me … my viewers and listeners knew as little as I did … nobody … and when I would talk about … the same response from so many people in the public … well-educated people, too.

MEIER: MmmHmm. Well, once you’re in the hospital, you get it …

HEFFNER: (Laughter)

MEIER: … and in fact you get a different one every week. It’s not even the same one, if you’re in the hospital more than a week because they turn over very rapidly.

HEFFNER: How come we know so little about this?

MEIER: Because it just was an industry shift that spread like a virus across the entire healthcare system. And as I said, it has its pros and it has its cons … but let the buyer beware … let the patient understand that the person they’re going to see in the hospital is probably within five years of finishing his or her training, has only worked in a hospital setting, doesn’t have a clue what goes on at home or in the doctor’s office or in the community …

HEFFNER: And sure as hell doesn’t know me.

MEIER: And doesn’t know you personally. So lest, lest you thought you could just relax into the caring and responsible arms of the healthcare system and, you know, trust that everything would be fine … you have, you have to be an informed consumer and you have to be an assertive consumer and if you’re too sick to do it, you’ve got to have a family member who can do it for you.

Because, because the system is not well designed to promote communication, clarity, coordination … unfortunately families and patients have to step into that breach ever more, with every passing year. And, again, this is a place where I feel that palliative care has stepped into that breach, particularly for the most vulnerable patients … those with the most live threatening and serious illness. Those whose family members are exhausted and overwhelmed and just can’t serve as the advocate because they could barely sleep at night.

Those are the really vulnerable patients to the mistakes, miscommunications, fragmentation and chaos of the modern healthcare system.

So, again, if I can convey one message to your audience it is to demand palliative care if you or a loved one has a serious illness and get connected to the team at your hospital.

Even if you don’t need it right now, you may need it later. You need the relationship, you need to be known to the team.

So that if there’s a pain crisis at 5:17 p.m., you don’t end up getting a tape that says, “Call 911, if this is a medical emergency.” You can get help from someone who can actually help you.

HEFFNER: What happens overseas. Where are “they”, by which I mean obviously the major advanced, generally Western countries?

MEIER: It’s an interesting question because we tend to think, in the United States, that we’re way behind other countries in this regard. And, in fact, the palliative care movement had its origin in London with Dame Cicely Saunders, who established the first hospice.

But, in a way, one of the problems that Europe and the United Kingdom and other developed nations face is that that origin sat within cancer. So the hospice movement was based on the needs of cancer patients.

It may come as a surprise to you, but only 22% of us die of cancer. 78% of us die of lots of other things … kidney problems, dementia, heart failure, emphasema, renal … kidney disease, frailty … debility … old age, as they say.

And in those countries … that 78% is out in the cold. If you have cancer, you can get palliative care. If you don’t have cancer, you’re kinda on your own. And in many ways the United States, to my great surprise, I learned this traveling around a lot … is ahead of other countries in recognizing that it doesn’t matter what the disease is, it doesn’t matter what the prognosis is … what matters is the needs of the patient and the family. Whatever the diagnosis is, whatever the prognosis is. Needs need to be identified and addressed, so that people can get through this.

And we’re doing better in this country in many ways than most other nations. There are exceptions … so, for example, I think New Zealand has really strong, nationally linked well-integrated palliative care teams.

A lot of the UK does not. A lot of Canada does not. There are some locations where it’s stronger … Edmonton has very strong, community-wide palliative care. Montreal does not.

HEFFNER: Even with a single payer system?

MEIER: Right. And, you know, it’s … you know how they say “all politics is local” … all healthcare is local … regardless of how it’s paid for, things evolve in a customized way based on the leadership and the local patterns of local communities.

HEFFNER: It’s so strange to me that like politics, medicine is a local …

MEIER: Well, you may be familiar from the Dartmoth Atlas which analyzes Medicare claims data that shows that the same medical problem in New York City is managed totally differently than the same medical problem in Iowa City, even though the patient is identical.

HEFFNER: And even … and with different costs, too.

MEIER: Very different costs, but also very different approach to management. And it’s not like the doctors are any less competent in New York or Iowa City … they were trained differently. And those local forces are very tenacious.

And that’s true everywhere in the world. So we can’t say, “Well, they had it all sown up in Canada, or they have it all sewn in New Zealand” … there are places were they … it’s better than other places.

Again, important for the patient and the family to understand what’s available in your community and at the hospital that you go to. Because if you’re getting your care in a hospital that doesn’t have strong and well-integrated palliative care … that’s not a good idea if you have a serious illness. You need to go to a hospital that’s really prepared to help you through it.

HEFFNER: This emphasis upon self-knowing, self-protective patients and their families …

MEIER: Yeah.

HEFFNER: … gives me the heebie jeebies … some …

MEIER: And you’re right.

HEFFNER: … for some reason.

MEIER: You’re right to have the heebie jeebies … when you’re least able to advocate for yourself because you’re really sick and you’re scared and you’re exhausted and you’re not sleeping and you’re in pain, and you’re worried about your wife and you’re worried about your kids … we’re saying …

HEFFNER: Yeah, how am I going to …

MEIER: … here’s where you gotta step up and be the corporate captain of your own ship. I wish it wasn’t the case. I wish I could say to you … you can … just fall back into the arms of the doctor and the healthcare system and trust that everything will be fine. The data don’t support that.

And you know, there are data … somebody gave me data yesterday that you are seven times more likely to die of a hospital medical error than you are jumping out of a plane with a parachute.

HEFFNER: (laughter) Very interesting comparison.

MEIER: So parachute jumping is safer because the quality control systems are much more standardized and consistent. If you were in Iowa City jumping out of a plane or Teterboro Field in New Jersey jumping out of a plane, they follow exactly the same safety systems. That is not true in the United States … in hospitals.

And … so the fact is hospitals are pretty risky places, particularly if you’re vulnerable, if you’re cognitively impaired, if you are immuno-suppressed from chemo therapy or radiation, or just being sick … stay out of the hospital unless you really have to be there for a procedure, like a surgery or something like that. Because they are dangerous and the more vulnerable you are, the most dangerous they are.

So, that’s why I say, “Let the buyer beware” and that’s why, if I have an older person going into the hospital, I tell the family they’ve got to take shifts, somebody’s got to be there all the time.

HEFFNER: Say that again.

MEIER: If I have an older person, a patient, going into the hospital, I will say to the family in advance … you need to pull in friends, family, people from the church and take shifts and have people sign up for shifts to sit with the patient.

HEFFNER: Now, tell me … why … what are the elements …

MEIER: Because everybody means well, but there are a lot of … there’s a lot of time pressures. And a lot of patients to take care by an ever more stressed and inadequately staffed team.

So things like … if the patient needs to go to the bathroom and they push the call bell and nobody comes … and then the patient tries to climb over the railing …

HEFFNER: MmmHmm.

MEIER: … and falls and breaks their hip. If nobody’s there … if you’re there, you can make sure that doesn’t happen, you can help the person to the bathroom. You can go out and collar the nurse and say, “You have to come in now, he’s climbing out of bed”. You have to have somebody with you … the hospitals are not staff adequately to respond quickly to important needs. Mistakes happen. Medications get given to the wrong person. You, you’ve probably read about wrong limb surgery …

HEFFNER: MmmHmm.

MEIER: … wrong side surgery … there’s a much more awareness of that now and much more effort to try to make it better, but it is far from perfect.

HEFFNER: I remember one of my early GP’s, Mack Lipkin, would tell me stories about the twenties … when well to do people would always make certain that they bought the time and services of Interns and Residents on their occasional day off to sit there with them, doing what you say a family member …

MEIER: Right.

HEFFNER: … or a friend must do now.

MEIER: So, for people who can afford it, I tell them to hire a companion who sits at the bedside, who … if someone needs help opening those impossible to open applesauce containers …

HEFFNER: (Laughter)

MEIER: … will open it. Will help the person eat. Will help them get to the bathroom. Will make sure they’re clean and dry. The staff in the hospital … you’re lucky if once a day someone comes in to clean you up. They’re busy … they’re taking care of … on a given floor … 30, 40, 50 patients. And it’s just the reality.

So, if you can’t afford it … can’t afford to pay privately for it, you need to mobilize a team to be with you. And many errors are prevented that way. And many adverse events are prevented that way.

HEFFNER: I always knew that going to the hospital was bad (laugh) for your health …

MEIER: (Laughter)

HEFFNER: … but I’ve learned more and more and more how true that is.

MEIER: Yes.

HEFFNER: I learned it as a joke. But it’s no joke.

MEIER: No, it’s not a joke. But one thing … people facing, you know, significant complex or serious illness can do is ask … even demand … palliative care support and consultation to work along side their medical team. To address all those things that get lost, that fall through the cracks.

HEFFNER: Even though you still have to fight and fight and fight to find a better, stronger place for palliative care in American medicine.

MEIER: You know, all good causes are worthy of the fight and the battle.

HEFFNER: And you feel that it’s being won.

MEIER: I do. I used to be a cynic, I’ve become an optimist. Even in this healthcare system …

HEFFNER: I don’t think you were ever a cynic …

MEIER: … even in this healthcare system … to see that despite the fragmentation and the ways in which this healthcare system does not work on behalf of patients, what I’ve seen in the last ten years in terms of the growth of palliative care, says to me this healthcare system has the capacity to heal.

HEFFNER: And do you think … in the 30, 40 seconds we have left that we’re … on a government level … moving in that direction?

MEIER: We’re trying to move in that direction on a government level … we have a political process that militates against a coherent, integrated patient centered healthcare system. And, you know, I wish more people were involved in politics and paid more attention because then maybe government would be more responsive.

HEFFNER: You’re a great interviewee …

MEIER: (Laughter)

HEFFNER: … thank you so much for having joined me the last time and this time Dr. Diane Meier. You’ll come back?

MEIER: I’d love to come back. You know I love to come and talk with you any time. Thank you for having me.

HEFFNER: Thank you. And thanks, too, to you in the audience. I hope you join us again next time. Meanwhile, as an old friend used to say, “Good night and good luck.”

And do visit the Open Mind Website at thirteen.org/openmind to reprise this program online right now or to draw upon our Archive of 1,500 or so other Open Mind and related programs. That’s thirteen.org/openmind.