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Joanne Lynn, MD, MS, discusses the role of hospice and other services.
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Joanne Lynn, MD, MS, discusses the role of hospice and other services.
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[ Music ] >> This is Christopher Muth, Editor at JAMA, and I'm interviewing Dr. Joanne Lynn, who wrote a chapter entitled "The Role of Hospice and Other Services, Serving Patients Who May Die Soon and Their Families," in JAMAevidence, Care at the Close of Life. Thanks for joining us today, Dr. Lynn. Can you please tell us a little about yourself? >> Sure. I'm Joanne Lynn. I'm a physician, the Director of the Program to Improve Elder Care at Altarum, which is a non-profit research and consulting enterprise based in Ann Arbor, Michigan, but I'm in the Washington, D.C., office.
>> Okay, great. And so we're reviewing a chapter that you wrote for the JAMAevidence, Care at the Close of Life. And the chapter that you wrote focuses on hospice care but also describes various end-of-life trajectories and how our current understandings of hospice care may or may not be best suited to fit each person's need and the needs of their family at the end of their lives. So I was thinking that we might start by talking about hospice care as it's traditionally defined, or conceived of, and then maybe broadening our discussion to consider end-of-life care options more broadly.
So to begin with, I was wondering if you could just provide a basic definition of what is hospice care, and how is it traditionally defined? >> Well, hospice care has been covered by Medicare since 1983, and so there was a tradition before that that was mostly voluntary and community run. But now the way that hospice works is really pretty much dictated by the way that Medicare has put it in place.
So hospice is limited to people whose physicians are willing to certify that they probably will die within six months, and who mostly have insurance coverage, although some hospices also take people with no coverage, relying upon community philanthropy. And hospice focuses upon supporting people well in the last days of life. So the average person is in hospice for only a couple of weeks, often even a couple of days.
They get very good support at home mostly. A few hospice patients are in a hospice facility or a nursing home or sometimes even a hospital, depending on what your community provides. But hospice provides good pain management, good symptom control, tries to keep the direction of care very solidly in the hands of the patient and their family, and provides support through to death and actually bereavement support for the family and friends beyond the period of time that the patient was alive.
So hospice was a wonderful innovation back in the early '80s, essentially taking people who otherwise would have faced pretty isolating experiences in hospitals, and instead returning them to home with a great deal of in-home support. >> Okay, and what types of individuals or care providers are commonly involved in the delivery of hospice care? >> Well, the backbone of hospice care is hospice nurses who do the visits.
They may, at times, be daily or sometimes even stay with the person for some hours. They stay in touch with the patient and family and try to make sure that what can be anticipated is anticipated and that there are very few emergencies or unforeseen events. The physicians are important in assessing symptoms and ordering medications and other treatments that might reduce symptoms.
And then, of course, there's the aides who are often in the home a few hours each day, helping with bed baths and arrangements for the sort of hands-on intimate care, personal care for the person. There's usually also an array of people with much more modest involvement, the pharmacist who can help advise on doses and preparations, the therapists who might help with, say, speech therapy or physical therapy to keep the person more comfortable.
So -- and then there are the volunteers. Hospices under Medicare are required to have a certain percentage of the care given by community volunteers. So you may well have a neighbor or someone down the street come in to sit with the person so the family caregiver can go out for a while, or to read, or to write letters, or you know, other things that a layperson volunteer in the community could do. So hospices are quite comprehensive for the arrange of services that they do.
>> I see. And if someone near the end of life chooses not to go to hospice care, what other types of traditional alternatives are there? Or what other types of care arrangements are used instead? >> In a hospital setting, and sometimes in an outpatient setting, you may be able to engage a palliative care program. Most hospitals now have a palliative care program. These provide at least the symptom management and the help with clarifying goals and setting care plans that a hospice would do if the person were in hospice.
The hospice program can also consult the head of hospice enrollment and advise the patient and family as to what's possible. And in addition to what the hospice can do, they often know a good deal about what's available in other services in the area. Beyond hospice and palliative care programs, obviously, any good primary care physician should know how to manage most pain and most other symptoms. So it's not as if you aren't in hospice or palliative care, you should expect to be miserable.
A primary care doctor should be able to handle most symptoms and most discussions about the end of life. But the supportive care can be much more difficult. If you are in Medicaid, the program for people who are impoverished, you may be able to get a fairly good array of personal care services. And if you're wealthy and you're in an area where there are enough people in the workforce, you may be able to hire a home care program or even just a freelancing home care aide, you know, through the classified ads or through networking to provide the personal care you need.
But there are a lot of people caught in the middle. They are not impoverished enough for Medicaid, and they are not wealthy enough or in an area with enough of a workforce, and so family tries to fill in. Sometimes neighbors and friends try to fill in. But the person faces a pretty difficult set of options in most of America if you are neither very poor nor very wealthy and need long-term supportive care.
So even if you are willing to take hospice once eligible, if the person mainly has dementia or mainly has a neuromuscular disease, ALS or Parkinson's, mainly has a stroke or multiple strokes, or bad heart disease, or lung disease, or liver disease, where they could live for a few years but they're going to need daily help because they just really can't get around to do the things that people need to do for personal upkeep, our society has not done terribly well for that group.
We don't create the incentives for savings that make it possible for people in middle-class jobs to save for this part of their lives. And we don't provide the services at the kind of volume that we already need, and we are going to need much more of as the baby boomers increase the numbers of people in this very unfortunate gap.
>> Yes, it seems to me that a lot of the people that develop chronic long-term illnesses associated with disability often end up in nursing facilities. >> Yes, and in some states, that's really the only option. The services that would allow a person to pay partial payment for their in-home services often have waiting lists that are longer than their lifespan, on the order of a year or two.
The waiting lists even for home-delivered food are often more than six months. So you have somebody that you acknowledge needs home-delivered food, and they can't prepare food on their own. They, you know, are able to unwrap a sandwich or heat something up in a microwave, but they can't otherwise do much more. And yet, the waiting lists can be six months or more. And so people are living on what we call tea-and-toast diets with whatever cheap stuff they can get in.
Maybe a neighborhood teenager is willing to run to the 7-Eleven and pick them up something. This is a really desperate need, and we don't do well at providing it. So people who need these services are often up against a very difficult set of circumstances, so they end up in the emergency room and then they end up in the hospital. And then the only real option is for them to pay over essentially all of their Social Security, pension, whatever else they have to a nursing home, and then the state will pay the rest under Medicaid because Medicaid requires that the state be willing to pay for nursing home care for people who have no other option.
Some states have done much better. Some states provide lots of options for partial payment. So the person who gets $2,000 on Social Security but needs, you know, $5,000 worth of services in the month maybe pays only $500 toward it and Medicaid pays the rest. And likewise, the person in a similar situation but who gets $5,000 in might be paying, you know, $3,000 toward their care, and Medicaid pick up the rest.
But that's only a few states. Most states don't do that, or don't do it at the numbers that need it already. And remember that within in a dozen years, we will have almost twice as many people needing supportive services in the community, and we are not even planning for that. We don't have it on our public debates as to the revisions and transformations that we need in medical care.
We don't have it in our politics. We don't have it in our public conversation. And yet it is entirely predictable that as the boomers hit 80s and 85s, in terms of their -- how old they are -- we are going to have a very large proportion that need these supportive services, and in many cases will not have the financing for it. Even in 2029, a recent "Health Affairs" article showed that more than half of people who live their adult lives in the middle class will be unable to afford housing and healthcare in their old age.
That should be very upsetting to us. That should be something that we are raising with our political leaders and in the public eye. We have half of the middle class going to be unable to afford housing and healthcare in 10 years, and we're doing no planning to evade that outcome. We really need to buckle down and do that. Hospice is a wonderful solution for the period of time when you're very close to death, but most of us will spend a long time sick enough to die if we get something bad happen -- you know, if a grandchild visits and gives us a cold, or we catch the flu -- but we otherwise could continue to walk that tightrope some variable length of time.
And that makes it very hard for us to use hospice care, and we just have not developed other comprehensive models. So you know, the choice between hospice care and nursing home care, you know, wealthy people can choose assisted living and continuing care retirement communities, but for most people, we are going to have people who cannot afford housing but for whom we can write a prescription for an expensive drug.
And we're going to have homeless elderly people who can't get housing and food for whom we can write a custom drug that costs $10,000 a month. There's something really very troubling about that vision. >> Yeah, I agree. I think you've highlighted sort of the tensions in terms of the healthcare system there. One of the other things I've been hearing more about is the idea of long-term care insurance.
>> Yeah. >> Can you comment on that at all? >> Oh, sure. Long-term care insurance, I carried it myself for a dozen years. I finally gave up on it this year when they doubled the premium. Most of the policies have no protection against increasing the premiums when you're in old age itself. And I've, you know, protected myself in other ways, but most people can't. So long-term care insurance at the present time is available only to about 10% of the population.
There are ways that would make it very much more available. The most appealing, from my perspective, is a proposal that was developed by the Bipartisan Policy Center, which would have the federal government pick up the cost of long-term care after a substantial period that you had to cover yourself. But the cleverness in this proposal is that the period of time you would have to cover for yourself depends upon your Social Security earnings over your lifetime.
So by the age of 45 or 50, 55, you would pretty well know how many years you need to cover. That would make long-term care insurance affordable and predictable so that, you know, at 50, you could say, you know, I've been in the solid middle class. I've been earning 60 to $90,000 a year. In the present deal with my government, maybe that requires three years or four years of long-term care coverage. So you go on to the marketplace and buy that.
And you know, you buy it in a permanent way so that over 10 or 15 years, you've purchased a permanent policy. Then long-term care insurance becomes quite reasonable. It's the long tail. You know, what if I had a 20-year period of being in a nursing home? That's what's killing long-term care insurance is that you cannot protect against having a small number of people with huge expenses.
When I first started working in a nursing home in 1978, I picked up a patient who had been in that nursing home since before I was born. >> Wow. >> So you know, those kinds of people, it only takes a few to really distort the long-term care marketplace. >> Yes. >> So if you think about people buying, say, fire insurance for their homes, you know, your insurance company can pretty well predict what your risk is and how much it'll cost.
And you know, auto insurance, they can pretty well predict what your risks are of being in an accident and what it'll cost. But the enormous risk of a small number of people with very long periods is what has made the long-term care insurance market a very weak market. So if we had the government step in to pick up the very small number who need long-term support for more than, say, five or seven years, then you could have a really active marketplace, and people would buy long-term care insurance rather than bankrupting their families.
Right now the biggest cause of personal bankruptcy is expenses in serious chronic illness that ends up in death. And it is astonishing that we have not pushed our political leaders to both make it more possible to save and more possible to provide the services. You know, Singapore, in 1985, started requiring that all new residential building and all major renovations have elements of universal design.
So now, most of the residential properties in Singapore are available to people who have to live in a wheelchair. >> Hmm, interesting. >> In my city, in Washington, D.C., we estimate that less than 1% of the residences outside of nursing homes and assisted living are available to people who have to live in wheelchairs. This is crazy. We know we're going to have 20% of the population between younger people and people in old age who need accommodated housing.
You know, why are we not requiring that housing not have one step to get into the house? >> Yeah, that's a good point. Okay, and I want to get back to talk a little bit more about some of the challenges related to hospice care, specifically, and as a patient and their family and their physician might be trying to decide what's right for them. I think one common challenge is that this idea that hospice is appropriate only if a patient has six months or less to live.
And that seems like it can be difficult to figure out from a prognosis point of view when someone might qualify for hospice. Can you talk a little bit about that? >> Yeah. The public perception is that doctors rather magically can -- and the usual phrase is, "Can you give me X amount to live." So you'll hear people say, "My doctor gave me six months to live." Well, you know, prognostication is challenging.
And the best we can do is to say that -- and this depends upon having better data than we usually have. But we would say, you know, for 100 people very close to your situation, here's how many would still be alive at whatever, six months, one month, 12 months. And we build hospice on the idea that you could tell when a person was essentially beginning to die, and that they were different from the rest of us.
I'll call the rest of us the temporarily immortal, people who don't have to be concerned about dying. So this was built on a idea that people go along sort of being themselves and doing well and then hit some precipice in which they clearly are losing ground almost every day, and they are on a path to dying. When I was growing up in West Virginia, people would say, "You got to go see John. He's failing now." And you know, you didn't put that off for a month.
It meant that, you know, he was really visibly losing ground. There are some illnesses that actually behave that way and for which we can be confident that this person is exceedingly likely to die within even the next month. And of course, most people very close to dying, you can tell that they are not going to live very long. Their blood pressure is failing. They've lost a lot of weight. They aren't getting out of bed. But six months ahead, it is very much more uncertain.
So when is it that this person with advanced dementia is going to catch a cold, have a heart attack, get a stroke? What is going to be the final thing that tips them over? Are they going to simply stop eating, and you know, die over a few weeks? You know, if a person is dying of repeated strokes, when is the next one going to happen? So we can, in some cases, say, well, you have more than a 50% chance to die in six months, but you still have a 30% chance of being alive in a year and a 20% chance of being alive at two years.
Is that person eligible for hospice care? So we get into this problem of if the government wants us to be very sure the person will die within six months, you will have most people coming in to hospice within their last few weeks. They will not get anything close to six months of hospice care. If instead you want hospice to serve many people, you know, who are in fact living with an illness that will take their lives, you will have a large number of people who live well past six months because that's the best we can do on prognostication.
So the country has not really come to terms with that. Medicare has never even defined what a prognosis of six months is supposed to mean. Is it 51% of people with your situation die within six months, or is it 99%? And obviously, on that question turns a huge amount of hospice eligibility. So we sort of swing back and forth on that question with never being quite clear on it.
And I think the problem is that we haven't developed an adequate long-term care support system, so hospice feels like the only comprehensive care system out there. So we periodically sort of encourage people and encourage hospices to take on people with long-term uncertain conditions in nursing homes and home care because we don't have alternatives.
And we also have the challenge that hospice now is mostly for-profit entities, whereas hospice started being very much community run. And now there are shareholders very interested in maximizing their proceeds from hospices. So you can't essentially trust the hospice in the way you could 20 years ago. You have to be more concerned that when the nurse says, "Oh, you can stay home with this.
You don't need to have a doctor see you." Is that nurse responding to pressures about the finances, or is the nurse, you know, kind of free of that and able to, you know, give a responsible professional opinion? So hospice has become -- it kind of whip-sawed both in the prognostication issue and in the financing issue. So what was -- what I confidently said about, you know, hospice being quite trustworthy when I wrote that article a decade ago, now, you know, lots of people report problems with hospice.
And you know, you have to be on your toes about what hospice folks are recommending because the tenor has changed from a community-run service to our suffering neighbors to a service that very often is just part of the medical enterprise, and has all the usual risks. >> Mm-hmm. And in your article, you highlighted three different sorts of trajectories of disease.
One was, for example, a patient with cancer who may have a very short amount of time to live. Then the second group were people with chronic organ system failures, like heart failure, or COPD with frequent exacerbations, and who might have a gradual progressive decline. And then the third group was older people with conditions that would lead to frailty and kind of progressive decline, like patients with dementia.
And so in your view, or in the -- I guess in the current state of things in the United States, is hospice appropriate for all three of those different trajectories, or -- >> Well, first you have to recognize that what we have done in the, you know, since hospice was developed in the early 1980s is to move many more people into the third trajectory. So we've become very much better at anticipating a crisis in heart failure or lung failure or liver failure, and stepping in early and preventing the exacerbation, which pushes that person into a chronic disease slow decline trajectory.
Same thing has happened with many cancers. So the fact that we can now be pretty effective in a number of cancers in converting them to a chronic condition makes them part of the third trajectory. There still are people in the first two trajectories. There still are people for whom you can confidently say, "This person is not likely to die in the next couple of weeks but is really not likely to make it more than a couple months." And there are people who will have repeated exacerbations and end up in the ER multiple times for medical reasons, not just social reasons.
We certainly have the people who end up in the ER for social reasons. But more and more people are in that last trajectory, for which hospice was never really developed. But because hospice is what Medicare pays for and is a comprehensive service, the only other comprehensive service that Medicare pays for is PACE, the Program of All-Inclusive Care of the Elderly, and that is effectively available only to people who are also on Medicaid.
So you know, most people don't have PACE as a possible outlet. They have some kind of amalgamation of home care by Medicare, home care they pay for, care by neighbors and family, going without and simply suffering, and you know, not having food delivered. And so hospice looks very attractive, except for the problem of, you know, having to accept that you're dying of this condition, which you may not feel like that's honest yet.
So you know, hospice could move to serving only people in the first trajectory as part of a reform to develop good ways of dealing with the support of people who are living through that third slow decline trajectory. Or hospice could expand to cover more of the slow decline, but then the insurers, and especially Medicare, since more than 90% of us die covered by Medicare, have to accept that there are going to be a substantial number of people who outlive six months, that it's not a fraud on the part of the hospice program but an expectable outcome if you're taking in people with dementia, with movement disorders, with strokes, with organ system failures.
You're going to -- if you try to have an average stay in hospice of three or four months, you're going to have a large number of people who live a year. And the government and others have not come to terms with that, nor has hospice. You know, is hospice going to try to stay with people who are clearly on a trajectory to dying relatively soon? Let's say, you know, before Christmas. We're talking in early September.
So you know, in the next three or four months. In which case, you're going to get people mostly who die in three or four weeks because that's when you can tell that the person is not likely to make it more than four months. >> I see. >> So it's a tough question, and it's one that we are not bringing out in the open. We're kind of patching things together in whatever way we can, including effectively putting people in hospice and then discharging them when they stabilize and saying, "Come back when you next have a, you know, substantial decline," and kind of using hospice to bridge our failures in long-term support.
>> I see. And I think another common challenge or I'm not sure if this is a misconception -- is that enrolling in hospice means that people must forego treatment of their chronic diseases, you know, disease-modifying treatments or other aggressive therapies, and that once you enter hospice, it's essentially comfort care measures are available to you. Can you comment on that?
>> Yes. There's this -- I think this was actually even in the chapter. There's this bizarre consent that you have to sign at the beginning of hospice care that says that you are no longer pursuing curative care. Well, I mean, as someone who has worked in home care, hospice, and nursing homes all of my life, there's no one considering hospice that has a cure available. This is -- I mean, strictly what the words say, you're giving up nothing because there's no curative care available.
But hospice has never been against disease-modifying care, which mostly also helps you live better and with fewer symptoms. So of course a heart failure patient coming into hospice continues to get diuretics, continues to get medications to boost the heart output, continues to get a special diet, and so forth because it modifies their disease and relieves their symptoms.
What it really ends up meaning is that hospice is a capitated program and therefore cannot take in people who are using expensive treatments. So they can't take in a person who is wanting an expensive radiation treatment, an expensive drug, who needs around-the-clock aide care, doesn't have enough family or volunteers to help them out. So what it really means is that you're giving up what you might have taken as a long-shot treatment that is now priced out of the range of what hospice can cover.
But we all hide behind this notion that this is "curative" care. And you know, again, there's no cure for progressive heart failure. There's no cure for progressive lung failure. There's no cure for progressive brain failure. If we had a cure, people would take it in a flash. So we've sort of used this term in a misleading way, a deliberately misleading way, and we've all sort of connived to allow that to happen because we can't really stand to say hospice is available only if you take relatively inexpensive treatments.
But that's what it really amounts to. And most of the really expensive treatments are things that happen in hospitals or drugs, but the one that is an Achilles heel of hospice is personal care. So when I started in hospice in 1978, before it was even a Medicare benefit, our big issue was people who were living alone and had no family and no friends able to help. You know, could we possibly manage 24-hour care even for a few days?
And we could for a few days but longer term we really had to have someone able to step in. And we had to turn down people who would not move into a nursing home and had no one to help. But now the big issue is costly drugs or a person who, you know, wants to go back for expensive, you know, custom treatments by radiation or even surgery. And that's a real shift in what hospice is able to do.
And we still have that same consent up front, that you give up on curative treatment, but it is not entirely honest and it has never been. >> Okay. Thank you very much. Is there anything else that you want to mention to the listeners, or any take-home points that you want to offer? >> Only that we really have a responsibility to speak up on behalf of our patients who need longer-term supportive services. We need to make the public and our political leaders aware of this group that are -- that most of us will be in.
I mean maybe not most doctors, but most of Americans will be in this group that are trying desperately to patch together some way to provide support for your family, initially, and then for yourself. And we really need to focus attention on this part of life. Hospice is part of the solution. PACE might be part of the solution. But fundamentally, we just really need to get a lot more dialogue before we double the numbers in just another dozen years and we learn to walk away from people who cannot get housing and food.
You know, already, most big cities have six months waiting lists for food, and years-long waiting lists for adaptive housing. And this ought to already be outrageous, and we're going to have twice as many of us. So yes, use hospice. Know your local hospice programs. Know your local palliative care programs. Know what they can do. Know what their limitations are. And then raise your voice in the public sphere about the people who are being left behind.
>> Thank you, Dr. Lynn, for taking the time to speak with us. You've been listening to Chapter 36, "The Role of Hospice and Other Services Serving Patients Who May Die Soon and Their Families" from JAMAevidence, Care at the Close of Life. This is Christopher Muth, Editor at JAMA, with this JAMAevidence podcast.
Segment:0 .
[ Music ] >> This is Christopher Muth, Editor at JAMA, and I'm interviewing Dr. Joanne Lynn, who wrote a chapter entitled "The Role of Hospice and Other Services, Serving Patients Who May Die Soon and Their Families," in JAMAevidence, Care at the Close of Life. Thanks for joining us today, Dr. Lynn. Can you please tell us a little about yourself? >> Sure. I'm Joanne Lynn. I'm a physician, the Director of the Program to Improve Elder Care at Altarum, which is a non-profit research and consulting enterprise based in Ann Arbor, Michigan, but I'm in the Washington, D.C., office.
>> Okay, great. And so we're reviewing a chapter that you wrote for the JAMAevidence, Care at the Close of Life. And the chapter that you wrote focuses on hospice care but also describes various end-of-life trajectories and how our current understandings of hospice care may or may not be best suited to fit each person's need and the needs of their family at the end of their lives. So I was thinking that we might start by talking about hospice care as it's traditionally defined, or conceived of, and then maybe broadening our discussion to consider end-of-life care options more broadly.
So to begin with, I was wondering if you could just provide a basic definition of what is hospice care, and how is it traditionally defined? >> Well, hospice care has been covered by Medicare since 1983, and so there was a tradition before that that was mostly voluntary and community run. But now the way that hospice works is really pretty much dictated by the way that Medicare has put it in place.
So hospice is limited to people whose physicians are willing to certify that they probably will die within six months, and who mostly have insurance coverage, although some hospices also take people with no coverage, relying upon community philanthropy. And hospice focuses upon supporting people well in the last days of life. So the average person is in hospice for only a couple of weeks, often even a couple of days.
They get very good support at home mostly. A few hospice patients are in a hospice facility or a nursing home or sometimes even a hospital, depending on what your community provides. But hospice provides good pain management, good symptom control, tries to keep the direction of care very solidly in the hands of the patient and their family, and provides support through to death and actually bereavement support for the family and friends beyond the period of time that the patient was alive.
So hospice was a wonderful innovation back in the early '80s, essentially taking people who otherwise would have faced pretty isolating experiences in hospitals, and instead returning them to home with a great deal of in-home support. >> Okay, and what types of individuals or care providers are commonly involved in the delivery of hospice care? >> Well, the backbone of hospice care is hospice nurses who do the visits.
They may, at times, be daily or sometimes even stay with the person for some hours. They stay in touch with the patient and family and try to make sure that what can be anticipated is anticipated and that there are very few emergencies or unforeseen events. The physicians are important in assessing symptoms and ordering medications and other treatments that might reduce symptoms.
And then, of course, there's the aides who are often in the home a few hours each day, helping with bed baths and arrangements for the sort of hands-on intimate care, personal care for the person. There's usually also an array of people with much more modest involvement, the pharmacist who can help advise on doses and preparations, the therapists who might help with, say, speech therapy or physical therapy to keep the person more comfortable.
So -- and then there are the volunteers. Hospices under Medicare are required to have a certain percentage of the care given by community volunteers. So you may well have a neighbor or someone down the street come in to sit with the person so the family caregiver can go out for a while, or to read, or to write letters, or you know, other things that a layperson volunteer in the community could do. So hospices are quite comprehensive for the arrange of services that they do.
>> I see. And if someone near the end of life chooses not to go to hospice care, what other types of traditional alternatives are there? Or what other types of care arrangements are used instead? >> In a hospital setting, and sometimes in an outpatient setting, you may be able to engage a palliative care program. Most hospitals now have a palliative care program. These provide at least the symptom management and the help with clarifying goals and setting care plans that a hospice would do if the person were in hospice.
The hospice program can also consult the head of hospice enrollment and advise the patient and family as to what's possible. And in addition to what the hospice can do, they often know a good deal about what's available in other services in the area. Beyond hospice and palliative care programs, obviously, any good primary care physician should know how to manage most pain and most other symptoms. So it's not as if you aren't in hospice or palliative care, you should expect to be miserable.
A primary care doctor should be able to handle most symptoms and most discussions about the end of life. But the supportive care can be much more difficult. If you are in Medicaid, the program for people who are impoverished, you may be able to get a fairly good array of personal care services. And if you're wealthy and you're in an area where there are enough people in the workforce, you may be able to hire a home care program or even just a freelancing home care aide, you know, through the classified ads or through networking to provide the personal care you need.
But there are a lot of people caught in the middle. They are not impoverished enough for Medicaid, and they are not wealthy enough or in an area with enough of a workforce, and so family tries to fill in. Sometimes neighbors and friends try to fill in. But the person faces a pretty difficult set of options in most of America if you are neither very poor nor very wealthy and need long-term supportive care.
So even if you are willing to take hospice once eligible, if the person mainly has dementia or mainly has a neuromuscular disease, ALS or Parkinson's, mainly has a stroke or multiple strokes, or bad heart disease, or lung disease, or liver disease, where they could live for a few years but they're going to need daily help because they just really can't get around to do the things that people need to do for personal upkeep, our society has not done terribly well for that group.
We don't create the incentives for savings that make it possible for people in middle-class jobs to save for this part of their lives. And we don't provide the services at the kind of volume that we already need, and we are going to need much more of as the baby boomers increase the numbers of people in this very unfortunate gap.
>> Yes, it seems to me that a lot of the people that develop chronic long-term illnesses associated with disability often end up in nursing facilities. >> Yes, and in some states, that's really the only option. The services that would allow a person to pay partial payment for their in-home services often have waiting lists that are longer than their lifespan, on the order of a year or two.
The waiting lists even for home-delivered food are often more than six months. So you have somebody that you acknowledge needs home-delivered food, and they can't prepare food on their own. They, you know, are able to unwrap a sandwich or heat something up in a microwave, but they can't otherwise do much more. And yet, the waiting lists can be six months or more. And so people are living on what we call tea-and-toast diets with whatever cheap stuff they can get in.
Maybe a neighborhood teenager is willing to run to the 7-Eleven and pick them up something. This is a really desperate need, and we don't do well at providing it. So people who need these services are often up against a very difficult set of circumstances, so they end up in the emergency room and then they end up in the hospital. And then the only real option is for them to pay over essentially all of their Social Security, pension, whatever else they have to a nursing home, and then the state will pay the rest under Medicaid because Medicaid requires that the state be willing to pay for nursing home care for people who have no other option.
Some states have done much better. Some states provide lots of options for partial payment. So the person who gets $2,000 on Social Security but needs, you know, $5,000 worth of services in the month maybe pays only $500 toward it and Medicaid pays the rest. And likewise, the person in a similar situation but who gets $5,000 in might be paying, you know, $3,000 toward their care, and Medicaid pick up the rest.
But that's only a few states. Most states don't do that, or don't do it at the numbers that need it already. And remember that within in a dozen years, we will have almost twice as many people needing supportive services in the community, and we are not even planning for that. We don't have it on our public debates as to the revisions and transformations that we need in medical care.
We don't have it in our politics. We don't have it in our public conversation. And yet it is entirely predictable that as the boomers hit 80s and 85s, in terms of their -- how old they are -- we are going to have a very large proportion that need these supportive services, and in many cases will not have the financing for it. Even in 2029, a recent "Health Affairs" article showed that more than half of people who live their adult lives in the middle class will be unable to afford housing and healthcare in their old age.
That should be very upsetting to us. That should be something that we are raising with our political leaders and in the public eye. We have half of the middle class going to be unable to afford housing and healthcare in 10 years, and we're doing no planning to evade that outcome. We really need to buckle down and do that. Hospice is a wonderful solution for the period of time when you're very close to death, but most of us will spend a long time sick enough to die if we get something bad happen -- you know, if a grandchild visits and gives us a cold, or we catch the flu -- but we otherwise could continue to walk that tightrope some variable length of time.
And that makes it very hard for us to use hospice care, and we just have not developed other comprehensive models. So you know, the choice between hospice care and nursing home care, you know, wealthy people can choose assisted living and continuing care retirement communities, but for most people, we are going to have people who cannot afford housing but for whom we can write a prescription for an expensive drug.
And we're going to have homeless elderly people who can't get housing and food for whom we can write a custom drug that costs $10,000 a month. There's something really very troubling about that vision. >> Yeah, I agree. I think you've highlighted sort of the tensions in terms of the healthcare system there. One of the other things I've been hearing more about is the idea of long-term care insurance.
>> Yeah. >> Can you comment on that at all? >> Oh, sure. Long-term care insurance, I carried it myself for a dozen years. I finally gave up on it this year when they doubled the premium. Most of the policies have no protection against increasing the premiums when you're in old age itself. And I've, you know, protected myself in other ways, but most people can't. So long-term care insurance at the present time is available only to about 10% of the population.
There are ways that would make it very much more available. The most appealing, from my perspective, is a proposal that was developed by the Bipartisan Policy Center, which would have the federal government pick up the cost of long-term care after a substantial period that you had to cover yourself. But the cleverness in this proposal is that the period of time you would have to cover for yourself depends upon your Social Security earnings over your lifetime.
So by the age of 45 or 50, 55, you would pretty well know how many years you need to cover. That would make long-term care insurance affordable and predictable so that, you know, at 50, you could say, you know, I've been in the solid middle class. I've been earning 60 to $90,000 a year. In the present deal with my government, maybe that requires three years or four years of long-term care coverage. So you go on to the marketplace and buy that.
And you know, you buy it in a permanent way so that over 10 or 15 years, you've purchased a permanent policy. Then long-term care insurance becomes quite reasonable. It's the long tail. You know, what if I had a 20-year period of being in a nursing home? That's what's killing long-term care insurance is that you cannot protect against having a small number of people with huge expenses.
When I first started working in a nursing home in 1978, I picked up a patient who had been in that nursing home since before I was born. >> Wow. >> So you know, those kinds of people, it only takes a few to really distort the long-term care marketplace. >> Yes. >> So if you think about people buying, say, fire insurance for their homes, you know, your insurance company can pretty well predict what your risk is and how much it'll cost.
And you know, auto insurance, they can pretty well predict what your risks are of being in an accident and what it'll cost. But the enormous risk of a small number of people with very long periods is what has made the long-term care insurance market a very weak market. So if we had the government step in to pick up the very small number who need long-term support for more than, say, five or seven years, then you could have a really active marketplace, and people would buy long-term care insurance rather than bankrupting their families.
Right now the biggest cause of personal bankruptcy is expenses in serious chronic illness that ends up in death. And it is astonishing that we have not pushed our political leaders to both make it more possible to save and more possible to provide the services. You know, Singapore, in 1985, started requiring that all new residential building and all major renovations have elements of universal design.
So now, most of the residential properties in Singapore are available to people who have to live in a wheelchair. >> Hmm, interesting. >> In my city, in Washington, D.C., we estimate that less than 1% of the residences outside of nursing homes and assisted living are available to people who have to live in wheelchairs. This is crazy. We know we're going to have 20% of the population between younger people and people in old age who need accommodated housing.
You know, why are we not requiring that housing not have one step to get into the house? >> Yeah, that's a good point. Okay, and I want to get back to talk a little bit more about some of the challenges related to hospice care, specifically, and as a patient and their family and their physician might be trying to decide what's right for them. I think one common challenge is that this idea that hospice is appropriate only if a patient has six months or less to live.
And that seems like it can be difficult to figure out from a prognosis point of view when someone might qualify for hospice. Can you talk a little bit about that? >> Yeah. The public perception is that doctors rather magically can -- and the usual phrase is, "Can you give me X amount to live." So you'll hear people say, "My doctor gave me six months to live." Well, you know, prognostication is challenging.
And the best we can do is to say that -- and this depends upon having better data than we usually have. But we would say, you know, for 100 people very close to your situation, here's how many would still be alive at whatever, six months, one month, 12 months. And we build hospice on the idea that you could tell when a person was essentially beginning to die, and that they were different from the rest of us.
I'll call the rest of us the temporarily immortal, people who don't have to be concerned about dying. So this was built on a idea that people go along sort of being themselves and doing well and then hit some precipice in which they clearly are losing ground almost every day, and they are on a path to dying. When I was growing up in West Virginia, people would say, "You got to go see John. He's failing now." And you know, you didn't put that off for a month.
It meant that, you know, he was really visibly losing ground. There are some illnesses that actually behave that way and for which we can be confident that this person is exceedingly likely to die within even the next month. And of course, most people very close to dying, you can tell that they are not going to live very long. Their blood pressure is failing. They've lost a lot of weight. They aren't getting out of bed. But six months ahead, it is very much more uncertain.
So when is it that this person with advanced dementia is going to catch a cold, have a heart attack, get a stroke? What is going to be the final thing that tips them over? Are they going to simply stop eating, and you know, die over a few weeks? You know, if a person is dying of repeated strokes, when is the next one going to happen? So we can, in some cases, say, well, you have more than a 50% chance to die in six months, but you still have a 30% chance of being alive in a year and a 20% chance of being alive at two years.
Is that person eligible for hospice care? So we get into this problem of if the government wants us to be very sure the person will die within six months, you will have most people coming in to hospice within their last few weeks. They will not get anything close to six months of hospice care. If instead you want hospice to serve many people, you know, who are in fact living with an illness that will take their lives, you will have a large number of people who live well past six months because that's the best we can do on prognostication.
So the country has not really come to terms with that. Medicare has never even defined what a prognosis of six months is supposed to mean. Is it 51% of people with your situation die within six months, or is it 99%? And obviously, on that question turns a huge amount of hospice eligibility. So we sort of swing back and forth on that question with never being quite clear on it.
And I think the problem is that we haven't developed an adequate long-term care support system, so hospice feels like the only comprehensive care system out there. So we periodically sort of encourage people and encourage hospices to take on people with long-term uncertain conditions in nursing homes and home care because we don't have alternatives.
And we also have the challenge that hospice now is mostly for-profit entities, whereas hospice started being very much community run. And now there are shareholders very interested in maximizing their proceeds from hospices. So you can't essentially trust the hospice in the way you could 20 years ago. You have to be more concerned that when the nurse says, "Oh, you can stay home with this.
You don't need to have a doctor see you." Is that nurse responding to pressures about the finances, or is the nurse, you know, kind of free of that and able to, you know, give a responsible professional opinion? So hospice has become -- it kind of whip-sawed both in the prognostication issue and in the financing issue. So what was -- what I confidently said about, you know, hospice being quite trustworthy when I wrote that article a decade ago, now, you know, lots of people report problems with hospice.
And you know, you have to be on your toes about what hospice folks are recommending because the tenor has changed from a community-run service to our suffering neighbors to a service that very often is just part of the medical enterprise, and has all the usual risks. >> Mm-hmm. And in your article, you highlighted three different sorts of trajectories of disease.
One was, for example, a patient with cancer who may have a very short amount of time to live. Then the second group were people with chronic organ system failures, like heart failure, or COPD with frequent exacerbations, and who might have a gradual progressive decline. And then the third group was older people with conditions that would lead to frailty and kind of progressive decline, like patients with dementia.
And so in your view, or in the -- I guess in the current state of things in the United States, is hospice appropriate for all three of those different trajectories, or -- >> Well, first you have to recognize that what we have done in the, you know, since hospice was developed in the early 1980s is to move many more people into the third trajectory. So we've become very much better at anticipating a crisis in heart failure or lung failure or liver failure, and stepping in early and preventing the exacerbation, which pushes that person into a chronic disease slow decline trajectory.
Same thing has happened with many cancers. So the fact that we can now be pretty effective in a number of cancers in converting them to a chronic condition makes them part of the third trajectory. There still are people in the first two trajectories. There still are people for whom you can confidently say, "This person is not likely to die in the next couple of weeks but is really not likely to make it more than a couple months." And there are people who will have repeated exacerbations and end up in the ER multiple times for medical reasons, not just social reasons.
We certainly have the people who end up in the ER for social reasons. But more and more people are in that last trajectory, for which hospice was never really developed. But because hospice is what Medicare pays for and is a comprehensive service, the only other comprehensive service that Medicare pays for is PACE, the Program of All-Inclusive Care of the Elderly, and that is effectively available only to people who are also on Medicaid.
So you know, most people don't have PACE as a possible outlet. They have some kind of amalgamation of home care by Medicare, home care they pay for, care by neighbors and family, going without and simply suffering, and you know, not having food delivered. And so hospice looks very attractive, except for the problem of, you know, having to accept that you're dying of this condition, which you may not feel like that's honest yet.
So you know, hospice could move to serving only people in the first trajectory as part of a reform to develop good ways of dealing with the support of people who are living through that third slow decline trajectory. Or hospice could expand to cover more of the slow decline, but then the insurers, and especially Medicare, since more than 90% of us die covered by Medicare, have to accept that there are going to be a substantial number of people who outlive six months, that it's not a fraud on the part of the hospice program but an expectable outcome if you're taking in people with dementia, with movement disorders, with strokes, with organ system failures.
You're going to -- if you try to have an average stay in hospice of three or four months, you're going to have a large number of people who live a year. And the government and others have not come to terms with that, nor has hospice. You know, is hospice going to try to stay with people who are clearly on a trajectory to dying relatively soon? Let's say, you know, before Christmas. We're talking in early September.
So you know, in the next three or four months. In which case, you're going to get people mostly who die in three or four weeks because that's when you can tell that the person is not likely to make it more than four months. >> I see. >> So it's a tough question, and it's one that we are not bringing out in the open. We're kind of patching things together in whatever way we can, including effectively putting people in hospice and then discharging them when they stabilize and saying, "Come back when you next have a, you know, substantial decline," and kind of using hospice to bridge our failures in long-term support.
>> I see. And I think another common challenge or I'm not sure if this is a misconception -- is that enrolling in hospice means that people must forego treatment of their chronic diseases, you know, disease-modifying treatments or other aggressive therapies, and that once you enter hospice, it's essentially comfort care measures are available to you. Can you comment on that?
>> Yes. There's this -- I think this was actually even in the chapter. There's this bizarre consent that you have to sign at the beginning of hospice care that says that you are no longer pursuing curative care. Well, I mean, as someone who has worked in home care, hospice, and nursing homes all of my life, there's no one considering hospice that has a cure available. This is -- I mean, strictly what the words say, you're giving up nothing because there's no curative care available.
But hospice has never been against disease-modifying care, which mostly also helps you live better and with fewer symptoms. So of course a heart failure patient coming into hospice continues to get diuretics, continues to get medications to boost the heart output, continues to get a special diet, and so forth because it modifies their disease and relieves their symptoms.
What it really ends up meaning is that hospice is a capitated program and therefore cannot take in people who are using expensive treatments. So they can't take in a person who is wanting an expensive radiation treatment, an expensive drug, who needs around-the-clock aide care, doesn't have enough family or volunteers to help them out. So what it really means is that you're giving up what you might have taken as a long-shot treatment that is now priced out of the range of what hospice can cover.
But we all hide behind this notion that this is "curative" care. And you know, again, there's no cure for progressive heart failure. There's no cure for progressive lung failure. There's no cure for progressive brain failure. If we had a cure, people would take it in a flash. So we've sort of used this term in a misleading way, a deliberately misleading way, and we've all sort of connived to allow that to happen because we can't really stand to say hospice is available only if you take relatively inexpensive treatments.
But that's what it really amounts to. And most of the really expensive treatments are things that happen in hospitals or drugs, but the one that is an Achilles heel of hospice is personal care. So when I started in hospice in 1978, before it was even a Medicare benefit, our big issue was people who were living alone and had no family and no friends able to help. You know, could we possibly manage 24-hour care even for a few days?
And we could for a few days but longer term we really had to have someone able to step in. And we had to turn down people who would not move into a nursing home and had no one to help. But now the big issue is costly drugs or a person who, you know, wants to go back for expensive, you know, custom treatments by radiation or even surgery. And that's a real shift in what hospice is able to do.
And we still have that same consent up front, that you give up on curative treatment, but it is not entirely honest and it has never been. >> Okay. Thank you very much. Is there anything else that you want to mention to the listeners, or any take-home points that you want to offer? >> Only that we really have a responsibility to speak up on behalf of our patients who need longer-term supportive services. We need to make the public and our political leaders aware of this group that are -- that most of us will be in.
I mean maybe not most doctors, but most of Americans will be in this group that are trying desperately to patch together some way to provide support for your family, initially, and then for yourself. And we really need to focus attention on this part of life. Hospice is part of the solution. PACE might be part of the solution. But fundamentally, we just really need to get a lot more dialogue before we double the numbers in just another dozen years and we learn to walk away from people who cannot get housing and food.
You know, already, most big cities have six months waiting lists for food, and years-long waiting lists for adaptive housing. And this ought to already be outrageous, and we're going to have twice as many of us. So yes, use hospice. Know your local hospice programs. Know your local palliative care programs. Know what they can do. Know what their limitations are. And then raise your voice in the public sphere about the people who are being left behind.
>> Thank you, Dr. Lynn, for taking the time to speak with us. You've been listening to Chapter 36, "The Role of Hospice and Other Services Serving Patients Who May Die Soon and Their Families" from JAMAevidence, Care at the Close of Life. This is Christopher Muth, Editor at JAMA, with this JAMAevidence podcast.
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