A geriatrician at Mount Sinai Hospital, Dr. Farber participates in its Visiting Doctors Program, in which doctors make house calls to elderly and homebound patients. Here, he talks about the challenge of caring for the "older old" -- those over 85; the national shortage of geriatricians; and the difficulties of balancing clinical care with quality of life. This is an edited transcript of an interview conducted on Dec. 19, 2005. Elsewhere on this site, are the stories of three of his patients.
- » The health care system isn't set up for the old
- » Caring for the "older old"
- » How to solve this new health care crisis
- » Deciding when enough is enough
- » Family caregiving and its burdens
What's the hardest for you, a physician, in treating older people?
... How to get things done. It's very challenging to try and do what you want to do for a patient sometimes. For example, you make a diagnosis, and you say, "Great, I know what problem it is that this person is complaining about, and I know how to fix it."
But it's more challenging than that with an older person, because I can say, "Go take this pill," but the person has some memory problems and can't reliably remember to take the pills. They may live at home and not have someone around to remind them. Or they may have 10 other pills, and I'm very reluctant to start something else ... that I know will interact with their other meds and increase their risk of side effects, including falls and further memory problems and confusion.
Some of it is also the system, trying to [provide coordinated] care in a system that's not built toward care coordination. So it's tough to find the right resources to help you to help your patient, and a lot of times the geriatricians feel overwhelmed: "I know what I want to do, I know what's best, I know how I can help, but I just can't do it." The resources aren't around. There's no support available. ...
Yes. Our medical system -- if you want to call it a "system" in this country, which it's really not; it's just a conglomeration of Band-Aids and patches that don't work -- has never been designed to treat chronic illness and to care for older folks with a lot of medical problems, which [we] call comorbidities, or more than one illness. Everything is geared toward single illnesses.
The reimbursement system also is set up to pay for individual pieces of the puzzle. They pay for procedures; they pay for physically doing something -- putting a needle in a person, doing something invasive. They don't pay for or encourage -- because they don't pay for -- any type of care coordination or managing chronic illness. ... None of that is at all given priority in the current health care system. So someone comes in, they have a pneumonia, and Medicare says, "We'll pay you, for pneumonia, X amount of money." But that person with pneumonia, who's older, may also have heart disease, bone disease, arthritis, diabetes -- a lot of other things going on that get affected by this pneumonia and end up needing lots of treatments. The support is not really there [for] those treatments, because there's no incentive to look in that direction and take care of them.
Long-term care is another example. Who's the biggest payer of nursing home care? It's Medicaid. Medicaid was not designed to be a nursing home payer. It was designed to provide comprehensive medical coverage to people that can't afford it. But by definition and by the way the system has progressed, no one else is paying for it, and so older people will all eventually become [so] poor -- because nursing homes are so expensive -- that they get put on Medicaid. So you have to [effectively] make the older adults in our society poor so that they qualify for a benefit to then pay for the nursing home. It's absurd. It's a crazy concept, but that's an example of the lack of planning. ...
Care for older adults is a lot more involving and time-consuming than it is for younger adults. A lot of older patients need transportation to get to and from the office. Lots of times that transportation is not necessarily reliable, and they may not be on time to visits to begin with. Even the process of registering -- finding your insurance card, giving your birth date, your age -- it may not be readily available in your mind. You may have to think about it or ask someone with you to remember that or look it up, write it down.
“You don't get paid to counsel, to coordinate, to plan, to advise, to help guide people through some serious decision making at really critical times in their lives. That's a big failure of the system.”
Getting from the waiting room into the office takes longer than it does for younger people, who just hop up and jump on the table. Even in the office, to examine a person, you need that person to remove clothing, and that takes a long time when you have arthritis, when you have a visual impairment, when you need assistance from someone else.
You often have to make room for someone else in that room. You have to accommodate a caregiver along with the patient, whether it's a family member or often a paid employee, a home aide or a home attendant who will come with the person and help them.
Even [their medical] history: When you ask the person, "How are you doing?," or "What's going on?," or "Is there anything bothering you today?," the true answer is, "Yeah, there are lots of things," but what you may get is, "Oh, no. Everything's fine." It's been shown in studies that [older people] are actually underreporters of symptoms as opposed to overreporters. Everybody thinks, oh, old people just complain all the time and there's really nothing going on. Well, the fact is, when we looked into that as physicians and did studies, it's quite the opposite. Oftentimes older people, more often than younger people, are not telling you about some serious problems, so it's more challenging diagnostically to figure out what's going on. You often have to rely upon histories obtained from other people. ...
If you want to get a test done, you don't just give a person a slip and say, "Here, go get the test, and then let me know when it's done." How are they going to get there? Who's going to bring them there? How are we going to schedule it? What kind of preparation is involved? All that takes a lot longer. ... And that's part of the reason why this public issue about access to care is a major problem. ...
That [problem with] access to care means that an older person is going to call up and [say], "I need a doctor," and the doctors say, "What's your insurance?," and they'll answer, "Medicare." Then [the doctors] say, "I'm sorry; we are not taking any new Medicare patients." And that's mainly because of the difficulty of caring for older adults in that population, the fact that it takes longer to care for them; they have more problems; and that you don't get paid to care for them. There's no reimbursement for coordinating complex care, which is often what geriatricians do. You don't get paid to think, to counsel, to coordinate, to plan, to advise, to help guide people through some serious decision making at really critical times in their lives. That's a big failure of the system.
To find people to do that is a challenge, because they're rare. There aren't that many geriatricians out there. Part of it is that it's not the most attractive field. It's tough to even make a living these days as a geriatrician because of the time that it takes to do a good job with each patient that you're seeing. You can't see 30 to 40 patients a day. You need to see 10 or 20, and sometimes it's hard to do that in a practice.
What do your contemporaries and your medical students think of your choice [of specialty]?
You know, one of the most common questions I get from colleagues after training in medicine is: "Geriatrics? Why? What are you doing? You could be doing cardiology or gastroenterology. ... Why instead would you choose something that has so much less prestige, makes much less money, takes arguably much more of your time to care for the same patient in the same way?" ...
... [F]or me, it's kind of a personal enjoyment of caring for older adults. There's so much satisfaction I get out of caring for people who really need your care and are kind of marginalized by the system. It's more challenging, too. I honestly like the fact that it's harder to get a diagnosis. It makes it more interesting and more challenging to figure things out. I like thinking about all of a person, and not just a disease or an illness or an organ system. I like to think of what do you care about; what are your priorities; and then how does this illness fit into who you are, and how can we help to manage it the best we can so that you're happy? There's a lot more goal negotiations and managing problems as opposed to just cut-and-paste-type medicine. ...
That's part of what I do, too, in an academic program, is try and influence the younger generation of training physicians and medical students that this is a viable option. ... It's rewarding, and [I] try and get people to recognize the field and break some of the stigma.
There's lots of stigma with aging in general. The stigmas are that [old people] smell bad; they're always incontinent; ...[it] takes forever; it's frustrating; why would you want to do that kind of stuff? ... I think that will take time.
Part of what's needed also is a real push from policy-makers, and hopefully they will [do something], as the baby boomer population is ... going to be shocked when they find out that there's no one out there who can really address their needs and their concerns. ... I hope that the baby boomer generation will be vocal and say, "We're not going to stand for this type of lack of care, and something must be done to change it," and shift the focus. We need a real paradigm shift ... in caring in general in health care, but especially for older adults.
How many geriatricians are there in the country?
Well, I think it's 10,000 or 12,000, maybe, in the country. The need ... would be more like 35,000 to 40,000. In geriatrics, what we've come to realize is, we'll never get to that number. No matter what we do and what kind of campaign we start to try and convince people that this is a good thing to do and you'll enjoy it and have a happy, successful and rewarding career, we're not going to get there. So part of what we need to do is train other people that choose different careers. ...
The number of geriatricians right now that are in a training program for geriatrics, in a two-year program, the number that are in their second year, that started this year, is about 50. It's nothing; it's really nothing. And the older adults, over 65, by 2030, [will be about] 20 percent [of the population]. So one out of five people are going to be older adults, and there's not really anyone trained to care for them. ...
So instead of preparing and managing in advance, we're unfortunately looking like we're not there yet, and it's going to have to wait until there's a public outcry about the lack of effective care for older adults.
[What should be done?]
What we need in the big picture, honestly, is a one-payer system, a system that covers everybody. This country needs to accept the fact that health care is a right and not a privilege and that every citizen deserves access to that care. In any capitalist society, there's always room for people who want more things or extra services, or to not wait as long for certain things, or brand name instead of generics. They can pay for that, and that's fine. But we haven't yet accepted the fact that everybody deserves a basic level of health care.
[Some say we need to start setting limits on how much care we provide the "oldest old" in order to reign in skyrocketing national health care costs.]
There are people that say we should be rationing [and] focusing that money on younger people, curable people, and cutting off a lot of older people at a certain time. There's some people that would argue that once you'd achieved the age of 80, you've lived your life and you've beaten the odds, and whatever comes next is just kind of a bonus, and we shouldn't be spending money to further prolong that.
My fear is that a lot of this, though, comes from ageism, this prejudice against older adults. I don't think it's right to set a number cutoff and to say that after the age of 85, we're not going to pay for X anymore, for example, because in geriatrics, what we see a lot of is the fact that there's chronologic age, and that's whatever age you are based on your birth date, and then there's physiologic age, which is where are you and what do you look like. When I look at someone who comes into my office, they may be 90, but they look to me like they're 75. They can do the things -- mentally, physically -- that a 75-year-old can do, and to say, "Well, I'm not going to give that person access to certain things," it's not fair. ...
Also, some of the data and statistics are very skewed. When you compare head to head how much money is spent, for example, on someone who ends up dying in the hospital when they're 80 as opposed to [someone who dies in the hospital at] 50, there's more money spent on the 50-year-old who dies than the 80-year-old. So you can look at that and say, well, it's not that we're spending all this money on the 80-year-olds; it's younger folks who actually take up more of the money.
Yet in your daily practice, you must face these choices.
Decision making is a big issue for older adults, and deciding upon a course of treatment is a big ordeal. Someone who gets diagnosed with a cancer when they're older, it's a real question of, well, wait, do we want to do the standard of care, which is surgery and then chemo, or is that really not what's best in this case? ... Are they really too sick and dying from other things, and it wouldn't be in their best interest to even go through a surgery like that, let alone make it through and live?
We deal a lot with figuring out the goals of care. For younger adults it's usually more clear. ... They're usually healthy, and they have a problem, and so you do everything you can to kind of address that problem ... that will let them live for the rest of their life, which could be decades.
But when you get up there in years, and you're 90, and you're frail, and you're at home, and it's hard for you to get out of the house even, and you have a lot of chronic pain and limitations, you may not want surgery to open up the blood vessels to your heart. It may be best to take a more conservative approach and try medicines. ... Some of it gets tricky because you have different people who think differently and want different things.
A lot of our job is also kind of guidance and education and goal setting. ... Sometimes I think it's upon the physician to come out and say what they think: "I would not recommend this course of action, or even offer this course of action, because it's not going to help achieve the goals that you told me you want to achieve." So sometimes it's a lot of letting go, understanding.
I think that's also what some people don't like about geriatrics, or get afraid of or repulsed by. It's this concept of physicians that we can do everything. We're going to cure you; we're going to fix you. [But] everyone dies. ... Physicians are not traditionally taught how to care for dying patients, and part of it is a fear. Everyone's afraid of death. No one's familiar with death anymore.
Most people say they want to die at home. ... But people don't die in the home anymore. People don't see their grandparents die. They die in the nursing home where they're not visited, or they die in the hospital, and kids are kind of kept away. There's this notion that we can avoid death and beat death, and that's just a delusion. It's a kind of public delusion, because everyone dies. And in geriatrics, yes, you see it more often, because most people that die are older.
Lots of times we're called upon to manage end-of-life care issues and say: "I would not even offer to put your father on a breathing machine because he's dying. He'll die with or without that machine. You're just going to prolong his suffering and prolong the dying process by doing that."
It's hard for people to accept withholding care, discontinuing certain treatments. And it's hard for physicians in general, [because] our medical system is not built to do that. ...
A lot of time goes into trying to tell people what they are, what they can do, what they cannot do, what does the evidence show, and help people make a decision about, do they want to use that treatment for their loved one? ... Then you're left with people that don't have the support they need to make these major decisions, so the default is "do it." So you have all these people with all these interventions that could have been avoided.
I think that's where a lot of the savings financially could be. It's in the inappropriate use of these interventions.
Every day you see someone in the hospital, you have to ask yourself: What am I doing for this person today in the hospital that can't be done elsewhere? Why does this person still have to be in the hospital? Because it's very risky to be in a hospital. And for older adults, it's riskier. There are lots of problems with confusion, disorientation, falls and infections. ... And sometimes you order a test because it's easy, because it's there, but then you kind of opened up Pandora's box, and now you found something you weren't looking for. And oh, boy, now what am I going to do about it? Well, you do another test, and then you do another test. And they say, "Well, in order to figure it out, I actually need to go stick a needle in your bone now and take out some stuff." Then you start getting into trouble.
Do Americans understand the consequences of the endless quest for prolonging life as long as possible?
I think people don't like to think about these things. People don't like to think about their death; they don't like to plan for it; and they don't like to have conversations with their loved ones about, "If I ever end up not being able to talk and eat and do this, X, Y or Z, or with very severe dementia, I don't want to be artificially maintained on these machines."
We have this Health Care Proxy Law [in New York] -- most states do -- that recognize[s] the right of someone to make these decisions, and that they don't lose that right just because they can't communicate. They can designate someone to make those decisions for them. But no one does these things. ... I think most people put their head in the sand and just kind of avoid it. ...
But it's very hard. ... We're very uncomfortable with stopping or withholding care. We have a very parochial view of what life is, the concept of "all life is worth living." Yes, life is precious; we all have that concept. But then you get to what is life, and what is the value of life, and that's kind of an individual question, because it can vary from person to person.
But it's a legitimate question. And some people, their are lives not worth living. With certain illnesses and debilitations, they don't want to continue to receive treatments that are going to prolong this kind of suffering. ... And all of a sudden you find yourself in a system that's not built to help you and care for you, and you can get lost. It's a big system, and it's very easy to get lost. That's what I see all the time.
Most people still retire at 65, and they don't live [just] five or 10 years anymore; they live 10, 20, 30 years [more]. And savings that was enough for five or 10 years is simply not enough for 20 to 30.
If people want to stay at home, ... they're going to need help, and that help costs money. There are huge costs associated with trying to stay home. But sometimes [the funds are] just not there. Lots of times family steps up, and I see tons of people that have family caregivers that have moved in. ... There's a lot of what we call noncompensated care for older adults, which means using family members and people that don't get paid to [provide care] because it's not obtainable from other sources.
Oftentimes it will start with just a few hours a day, maybe a couple times a week, someone to come and help do some of the heavier housework, the food shopping, cooking a few meals, some of the more [heavy] cleaning, laundry, things that get too difficult for some older people to do. Then that may progress to more of a daily need; that people actually need someone to kind of help them get dressed every day, bathe and remind them to take the meds. ...
And then, as people progress, they often need more hours. Ultimately they'll require either someone to be with them 24 hours a day, seven days a week, or [to be] in a setting where there are people available 24 hours a day, seven days a week, and that's a nursing home. I have many patients who have that level of care at home.
I'm thinking of one person in particular [Mrs. Paunescu], who clearly is eligible for nursing home placement -- she's very dependent and needs care all the time, around the clock -- and her daughter will not in any way, shape or form consider having her mother move to a nursing home. She considers it abandonment, failure of her duty as a daughter, and would never dream of entertaining that possibility. That's rare, and that's becoming rarer. ...
More commonly, what I see here is [that] people really do care; they want to help, but they're just not around. The son is in Florida and the daughter's in California and the patient is in New York. People are busy. They've got their own lives; they've got their own families; they've got their work. They can't just pick up and move. And Mom also may not want to move in with one of them and leave all of her friends and everything she knows to move in with a daughter and feel like a burden. ... And there may not be so much room in that home to accommodate other people. It's a big responsibility, and I don't think most people realize what a major responsibility that is. ...
A lot of caregivers get, quite frankly, depressed, frustrated, burnt out, and leave or move on or just can't do it. I see a lot of families that try or start, and say: "Look, we don't have the wherewithal to do this. Can't we have her in a nursing home?" ...
What do you see in homes as you make house calls? What does it take to keep people home?
These home visits for me are so illuminating. ... It is amazing what you'll see when you go to some people's homes and what it takes for them to continue the care at home. It's really like a hospital-at-home scenario. They'll have these very fancy, expensive hospital beds. ... They're electric; they're big; they're bulky. Sometimes they can't fit in the room, so now the person's in the living room. And then there are cartons of chucks and disposable gloves and bags of saline to clean the wounds and tons of equipment just like you'd see in the nursing station, in the supply room. It's all in someone's home.
In addition, there's a lift. This is called a Hoyer lift. It's a big device ... with a sling, where people can lie on [it] and then be physically lifted up out of the bed and placed someplace else. It's a lot of work.
[What is your impression of nursing homes?]
The nursing home where I [started working and training a few years ago] is fantastic. I think it's one of the best ones out there. The staff is great. The physicians are really wonderful and dedicated. But it is an institution, and people do lose their personal identity and give up a lot of their individualism to join the system and get cared for in a group setting, where things happen at certain times, and schedules are adhered to, and you have your room, or you're with your roommate, and you have the nursing station in the middle and the long hall. It feels like a hospital. It is a hospital.
They all are places where there are a lot of older, debilitated people, coming toward the end of their lives. A lot of people die there. One person I visit on a regular basis in the nursing home calls it "the waiting room," and she views it as "This is where we all come to wait to die." And in some perspective, she's right. That's what happens.
I've seen people who thrive there. I've had patients that were at home and then went to a nursing home, and they're much better off. The socialization -- they're participating in groups, having all these people around for meals -- is tremendous. They live off of it and thrive from it. So it's not always a downturn for some people. ...
How do you get close to the truth about aging? What should we know?
... They should know that it's going to be tough to find the right kind of care for their needs, and they should know that they're going to be having to jump into a system that's really not built to cater to their needs. It's going to be tough to navigate, figure out where to go, what to do, what's appropriate.
I always like to use the phrase, "Prepare for the worst but hope for the best." Unless there's a big public policy shift in the country [about] how we can help older people instead of just trying to ignore their problems and hope they'll just go away, it will be a crisis scenario.
But I'm optimistic that it won't come to that. I think that this generation that's aging now and becoming Medicare-eligible will hopefully effect some change and influence the policy-makers and help generate a cultur[al] revolution to accept that aging is not this inevitable decline and decrepitude. There are things that we can do to promote a healthy aging.
If not, what will the crisis look like?
Well, I think there will be a lot of folks that as they get older, they're going to run into problems, and they're going to not be able to get the care they need. They're going to end up in and out of the hospital, in and out of nursing homes and rehab facilities, going from place to place, getting all sorts of procedures and interventions and things that they may not really want or need and really end up lost in a system. ...
[What can people do to prevent this worst case scenario from happening to them personally?]
I think that there's a lot of inappropriate use of technology. What we're coming to realize is that just because a technology exists doesn't mean that we need to use it in every conceivable situation. ... A DNR order, a do-not-attempt-to-resuscitate order [sic], means: "When my time comes, when my heart stops or when I stop breathing, let that happen. Don't take machines and paddles and try and shock my heart and see if you can bring back a rhythm, or put a breathing machine in and breathe for me when I can't do it on my own." It's a kind of recognition of the fact that death is inevitable. We all will die, and when my time comes, I [do] not [want it] prolonged with all this artificial stuff.
So we talk about DNR and this kind of stuff, [but] it's one piece of the puzzle. Advance care planning is more of the bigger picture. ... A lot of what we see in the hospital is misperceptions, unrealistic expectations, poor communication. So the battles that happen are usually between families that want to continue all sorts of aggressive, what we feel is inappropriate, medical treatments on someone who is dying or not benefiting from those treatments. A lot of [what is needed] is communication about how to help people see what's happening and make the best decision. ...