How Jimmy Carter Changed the Conversation On Hospice Care

CHRISTIANE AMANPOUR, CHIEF INTERNATIONAL ANCHOR: Now, an unlikely candidate is breaking some of the misconceptions around hospice care. Earlier this year, the former U.S. president, Jimmy Carter, announced he would enter hospice care. And while many took that to mean he was on the verge of death, he is now just weeks away from celebrating his 99th birthday. So, congratulation to him. And Dr. Daniela Lamas is a critical care physician and says hospice does not automatically mean death. She joins Michel Martin to explore what she calls President Carter’s final gift.

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MICHEL MARTIN, CONTRIBUTOR: Thanks, Christiane. Dr. Daniela Lamas, thank you so much for talking with us.

DR. DANIELA J. LAMAS, WRITER, “A FITTING FINAL GIFT FROM JIMMY CARTER” AND PULMONARY AND CRITICAL CARE PHYSICIAN, BRIGHAM AND WOMEN’S HOSPITAL: Thank you.

MARTIN: You recently published a piece in “The New York Times” titled “A Fitting Final Gift From Jimmy Carter.” And you talk about the former president’s decision not just to enter hospice care, but to talk about the fact that he had entered hospice care. What made this important to you to write about?

DR. LAMAS: Well, as a critical care doctor, I mean, I work in the intensive care unit, I see patients often or not infrequently at the ends of their lives or facing the ends of their lives and in the intensive care unit for whatever reason. And often, that’s entirely an appropriate choice. But at the same time, the questions of hospice often come up. And there is a real hesitation, fear, to discuss this. Particularly for people who are not, you know, in the final days of life. And so, the fact that Jimmy Carter was very public with his decision to enter hospice when there were months of his life to go, whether or not he knew it at that time, he wasn’t in the final days of life, I felt like that was a very kind of important and powerful model to give to an American public.

MARTIN: For people who are not familiar with the term or the practice or what it is, what is hospice?

DR. LAMAS: Yes. So, hospice is — I mean, ultimately, it’s a benefit. It’s an insurance benefit that people get, which means that if a doctor determined that they’re within, the best that we can tell, last six months of life, they can receive care that is targeted to their comfort rather than life prolonging measures. Meaning, often, that people don’t return to the hospital or to the emergency department in those last months of life. They are cared for either at their home or at a hospice facility. So, it’s really care that is targeted toward comfort rather than life extension for people who are in the last six months of their life.

MARTIN: You point out in your piece that half of patients in hospice are enrolled for only 18 days or less. That a tenth are in hospice for only one or two days before they die. So, what’s your take on that? Is that that people don’t know about it or you think that maybe people are afraid of it or they think that it means you really are in last couple of days?

DR. LAMAS: Yes. I think probably the latter. I’m sure that there are some people who don’t know about it. But I think in the past decade or so, the sort of prominence of hospice and palliative care as a discipline has become more prevalent in terms of discussion. But I think at the same time, there’s a real fear and challenge with acknowledging that somebody is there. That your loved one is there. And as a result, hesitation to acknowledge it until it is impossible to ignore until somebody is really in the last couple days, couple of weeks of life. And I think that — you know, I’m saying that in a way that suggests that that comes just from the patient or family member, but that’s not fair or true, that’s also coming from us, from doctors, from their caregivers who have very similar human reactions to say, no, no, no, there’s something more I can do. There’s something more I can do, instead of really opening up this other avenue of care.

MARTIN: That’s interesting. Are you saying that doctors as patient are reluctant to embrace hospice care or are you saying that doctors don’t necessarily introduce the idea to their patients, you know, as an option?

DR. LAMAS: The latter, that doctors don’t necessarily introduce that idea to their patients, which I think makes sense. I think it is hard for us as doctors to — who are, you know, trained with the idea of sort of avoiding death, of prolonging life, to acknowledge, to say, we are there, there’s nothing more that we can’t or perhaps should do to the intent only to prolong life. Now, it’s time for us to talk about maximizing quality of life and to talk about something like hospice, and that’s hard to do. That’s hard for doctors who have known their patient as long time particularly to do.

MARTIN: So, why do you think it’s so important that Former President Carter not only availed himself of these services but made a point of talking about it? Because we well know that, you know, people have a right to some sort of medical privacy, especially when they’re no longer in office. He didn’t have to tell people, you know, what he was doing and where he was, but he chose to. Why do you think it’s so important that he did?

DR. LAMAS: Yes. I mean, exactly to your point, he didn’t have to and yet, he did. And I think he offered a model of a way to face the end of one’s life that doesn’t feel like defeat, that doesn’t feel like giving up. There was the announcement that he was announcing hospice care and then, there are articles about how he was spending time with his family, you know, details like eating ice cream, these sorts of things, that, you know, suggested that it’s not that hospice correlates directly with death, it’s that this is a way to meet the final months of one of life. We don’t even know how long it will be, really, on one’s own terms. And for him to say that, for him to acknowledge, this is the way that I am choosing to end, I think is a powerful model to say, this is the way one can do it. This is the way you can do it and it can still be graceful, it can still be heroic.

MARTIN: I have to say that, you know, as we are speaking now, it’s been about six months, and I think that —

DR. LAMAS: Yes.

MARTIN: — that’s kind of its own message in a way. People who have seen him say that he’s in a very joyful, peaceful state of mind. That he is, in fact, enjoying the time, you know, with his family. So, can you just talk a little bit more about, like, what are some of the kinds of things that take place when one is in hospice care?

DR. LAMAS: Yes. So, just to kind of make a differentiation, some people can be in hospice at home and others, because of their own personal preferences, because of their needs, because there isn’t a setup at home to make this possible, which we can talk about, choose to be in hospice, in a hospice home or a facility. And both of those are the right choice for people based on their circumstances. At home, one is at home. There are hospice providers who come a certain amount of times a week, sort of shifts based on your need. And you exist. You live your life. You can still be treated for an infection with antibiotics, it doesn’t mean that all care that is intended to avoid infections or sickness, that all care stops. But if you’re in pain, ideally, you don’t go to an emergency room. Ideally, there actually are medicines at home that you can receive or medicines at hospice facility that you can receive. There are — you know, there are issues surrounding, you know, what counts as life prolonging that’s not allowed in hospice and what might actually be tailored to people’s comfort. There’s, you know, debates about whether or not people on hospice should be able to continue to undergo dialysis, for instance. So, there’s some complexities there. But the sort of big picture is that people can continue to do the things that are important to them and live their life while being aware that what they’re trying to do is maximize the quality of their time that is remaining rather than maximizing quantity.

MARTIN: Is there anything you could point to to demonstrate that hospice care can be an effective way to address this time in one’s life?

DR. LAMAS: Sure. I mean, you know, studies sort of looking at patients who have enrolled in hospice, you know, people have — that are pain control, you know, there are people who are — even after having conversations about how to sort of have their care, at the end of their life, conversations about realistic prognosis. People are less anxious, less depressed sometimes. You know, being able to really — I think for a lot of people, uncertainty is the worst thing. And so, being able to say, OK, I’m looking ahead. This is a decision I have made. This is where we’re at, is kind of — even if that decision is terrifying, that allows people to take back power and to determine, you know, what this period of time looks like. And that in and of itself, I think, has sort of great psychological and ultimately, pain relief in the setting of hospice benefits.

MARTIN: Kind of reaction have you gotten to your piece?

DR. LAMAS: I would say the reaction has been, you know, mostly positive to say, yes, you know, that this was a powerful message, that Former President Carter chose to make by sort of announcing this. But also, you know, sort of reading through the comments on “The Times” website and in conversation, I think something that came up a lot is, yes, he has been able to be — and for all we know, will continue to be in hospice in his home. But for a lot of people, that’s not possible. The hospice benefit itself doesn’t guarantee 24/7 care giving. That really does fall on family members, who, if you look at sort of the stats of who cares for people who end up in home hospice, are predominantly women and sort of the demographics of caregiving that one would expect. And not everybody has that. That’s not possible for everybody’s family. People sometimes need to work and aren’t going to be able to be home and taking care of somebody’s. And so, a lot of these comments were yes, when this is possible, this can be beautiful for people and a meaningful and important way to be able to meet the final months of one’s life, but it’s not possible for everybody.

MARTIN: In response to your piece, one reader wrote, the idealized fantasy of at-home hospice care is just that, a fantasy. My husband’s death was traumatic for the whole family. Based on my experience, I urge families faced with the heart-wrenching decisions around end-of-life care to consider the family’s needs and the patient’s leads, not the false advertising of a hospice agencies or naive recommendations of doctors who don’t live with the consequences. And clearly, this was a painful experience for the person who wrote this. What’s your response to that?

DR. LAMAS: My response is that we need to do better. You know, I think and I say this in the intensive care unit where we see families whose loved one was on hospice, pain became excruciating. The family became scared because they’re not trained physicians or nurses. And they call 911. And then, end up back in an intensive care unit. And that happens. That happens too commonly. And that’s a failure not of the family, to be sure, not of the patient, but of the hospice system where — and of this — exactly as that letter said, this is sort of gauzy (ph) fantasy that we give people where we say, people want to die at home, if that’s — you know, if you love — your loved one, that’s what’s going to happen. But then, we don’t have a healthcare system that is set up to offer that in a way that doesn’t rely on family caregivers. It works when it works. When there are enough people there who feel comfortable enough with things like giving morphine. You know, in certain families and circumstances, it does work. But it doesn’t work for everyone. And we — if we pretend that it does, we definitely do people a disservice in the hospital. And that’s — I mean, I think, you know, that letter, I — my heart breaks for that person because that is not the end that anybody would want or want for the person that they loved.

MARTIN: And I also wonder how you would address, you know, the equity issues. I mean, part of the suspicion around, you know, the healthcare system speaks to the fact that some people have been and remain very badly treated by the healthcare system in this country, that they are made to feel that they don’t matter, that their lives are not as important. And I just wonder how you deal with that, because that is so fundamental to people’s question about, are you doing enough for my loved one? And is it because of who they are as opposed to because they’re human being? You know what I mean? How do you — how would you fix that?

DR. LAMAS: Yes. I mean — so, I think there’s sort of systematic or systemic ways to fix that and then also just doctor/patient ways. And I think, you know, it boils down to trust and how do you get somebody to trust you. You have to earn that trust. And so, you know, I think our system has to be better at making sure that we sort of meet people where they are and actually give them the care that they want and need. You know, working in the hospital, I should say, we err on the side of doing more, far more than we err on the side of doing less. The ways that we harm people are, I would say, almost always offering that final line of chemotherapy, offering that final stay in the intensive care unit. We are very hesitant to pull back. And if you look at how that boils down, you know, black patients and patients and minoritized groups, they are less like to receive palliative care, perhaps that is because they’re less likely to sort of trust those recommendations, but also, we’re likely less likely to offer it. I think that, you know, that sort of the opposite side, where that too is an inequitable. And I think if you look at who is able to do hospice at home who has family members who can take time out of work to be there, you know, you see equity issues with that as well, and sort of the system and Medicare of reimbursement has to be better at that.

MARTIN: I know you didn’t write about this in your piece, but it does make me wonder whether our kind of media images of what great care looks like is, in part, too irresponsible for our kind of mindset. And I do wonder whether it’s because, you know, we’ve seen all these TV shows where people rush in and they’re pounding on the people and people are yelling and sweating. And so, people have it in their minds that that’s what good care looks like, there’s a lot of activity and motion and yelling and machines. And I think I hear what you’re saying, as a hospital-based physician, that no, that that’s actually brutal, and that perhaps there are other things. You know, I just wonder if maybe it’s a mindset shift?

DR. LAMAS: I think it is entirely. I think — you know, I think our — you know, if you look at the outcomes of cardiac arrests on medical television shows, they are far superior to the outcomes in real-life, right?

MARTIN: And you would know. Do I have this right, that you would know because you’ve actually written for some medical TV shows, presumable hoping to try to get more reality to it, I hope?

DR. LAMAS: Entirely. Yes, yes. That was the hope. So, yes. Entirely. You know, and if you look at what images the media gives though, they are inaccurate. I think the images of, you know, peacefully floating away in one’s slumber at home are also not always true. Even in home hospice, you know, death can be hard and it can messy. And if somebody — if a family is not prepared for that, that’s not — if that’s not something that people can — are willing to sort of sit with and are able to carry with them without real trauma, you know, then that option is not actually right for everyone. And, you know, just because this was Jimmy Carter’s choice, and I think it was an important thing to publicize, it also doesn’t mean that everyone has the family structure and the life that would allow this. For some, it would never be right. And for some, it’s not right because our healthcare system doesn’t offer appropriate reimbursements.

MARTIN: So, before we let you go, Dr. Lamas, what do you think would make this better?

DR. LAMAS: You know, I think on many levels, there are different ways to make this better. I think, you know, up from downstream, I do think that having conversations with patients about realistic prognostication and about what is important to them in the setting of those realities. You know, there are things that are important to people more than living as long as possible. And sort of understanding those and understanding the way those change overtime and really targeting our care to get to what’s important to the individual is essential. And we can do better at that. I also think on a broader level, if we’re looking at, you know, Jimmy Carter’s, what we assume his death will be at home, and that’s something that should be achievable to others, I do think that Medicare reimbursements for in-home care giving at the end-of-life have to be better. And to make that possible to people, particularly as we are at the same time selling a notion to people that a death at home is something that they should want and should be able to achieve. And so, I think we can do better both downstream and sort of at those final months of life.

MARTIN: Dr. Daniela Lamas, thank you so much for talking with us.

DR. LAMAS: Thank you for the time. I really appreciate it.