The dean of medical education at the Mount Sinai School of Medicine in New York City, Dr. Muller is one of the founders of its Visiting Doctors Program, which provides care for homebound patients who can't get to regular medical checkups. Soon after the program started, it became clear that the people who stood to benefit the most were the elderly, particularly those of very advanced age. Dr. Muller talks about principles that should guide doctors in treating the elderly, the impact of caregiving on families, and what needs to change in the health care system to address the increasing "old-old" population. He also discusses end-of-life decisions, where to draw the line when they arise, and how he tries to help patients and their families understand their choices. This is the edited transcript of an interview conducted on Dec. 20, 2005.
- » His own family's conversations about long-term care for his parents
- » Elderly patients need an "advocate"
- » Why people fear nursing homes
- » End-of-life issues he's witnessed
- » What people should understand about living so long
- » How medical students respond to working with elderly
What are the particular clinical challenges of working with the elderly population?
The biggest issue is loss of function. Not everyone has cancer, not everyone has Alzheimer's, but almost everyone loses function. By function, I mean it could be something as simple as slowly worsening vision from something that's not necessarily curable, like macular degeneration; or really bad arthritis in one knee that makes it harder to get around; or bigger things, like Alzheimer's or Parkinson's disease.
Even people who are in their 80s and 90s and stay relatively healthy, they know that they can't be what they used to be, and it's hard to give that up. It's hard to give up the independence; it's hard to give up the strength. And that's something everyone ultimately confronts.
Regarding the burdens of caregiving for those taking care of elders, what do you see?
... Even within the pool of success stories, it tears people apart. It tears families apart. We've cared for lots of people whose children have divorced or separated temporarily because of the need to take care of an aging mother or father and the impact on their kids and the impact on their jobs. So the stress comes from every conceivable direction.
I don't really know what the scope of it is, but I imagine that it's huge and that as a society we've chosen to completely ignore it, just because it's easier to ignore it and pretend that it's gone away.
We hear about the crisis in long-term care. What does that mean?
Each of us, whether we're in the baby boomer generation or not, has parents, and we watch our parents get a little bit older, and even if they're relatively healthy and functional, you see the slowdown, and you anticipate. You try to plan ahead for being able to be around and care for them, and at the same time you've got a family of your own and kids and a job and career aspirations.
I haven't figured it out for myself either, as far as my parents are concerned. I'd like to believe that I'll be there and be available for them, whatever they need and whenever they need it, but I don't know if that's really going to be the case.
We've had the beginnings of those conversations. ... I think their expectations are very typical and very traditional: none, zero. They don't have any expectations that they'll move in with us. They don't have expectations that we'll have to do anything extra for them. They don't want to be a burden. They'd like to stay independent. So it's typical and it's traditional.
But I think most children, certainly the children of the patients that we take care of, want to be there, and they feel like it's what they've always wanted to do. In a sense, they pay their parents back for a lifetime of being cared for. But at the same time, parents sense that it means a lot of sacrifice, that it will be a burden, that it will cost money, that it will take time. And that's without even considering the fact that someday they may fall and break a hip; they may become incontinent; they may develop Alzheimer's and become agitated. And what about the kids? And what are people going to say? It goes right back to the question of our culture and society, and what's accepted and what's not accepted.
“I spend half my time telling the students/residents the patient's story. .. their medical diagnoses, but also who they are, what they've done ... It doesn't exist at all in nursing homes ... hospitals. I think a lot of patients are willing to trade off some cutting-edge medical care for the sake of that human contact.”
I don't know anyone in our neighborhood where we live, for example, who have parents who are living with them. I don't even know where all those parents are. ... If you go to different communities, maybe if you go out to the Midwest, maybe if you go to more rural areas, people do tend to stay in a more tightly knit nuclear family, and they do take in their folks, and there are three or four generations sometimes living together in the same home.
Would you feel a failure if you had to put your parents in a nursing home?
I wouldn't do it, no matter what it took. It's easy for me to say; my wife's not sitting here. But I think she feels the same way about her parents. I can't think of a reason in the world that they would have to go live in a nursing home. I can't think of anything in our lives now that we wouldn't sacrifice for the sake of their being able to stay with us. ... For the sake of being able to stay around and stay together, and [to] send a message to my kids, there's nothing that we wouldn't sacrifice in order to have them be with us.
What message would your children get from that?
The message is, people are important. Has nothing to do with being old; has nothing to do with being Grandma and Grandpa or whatever; doesn't even have anything to do with family. It's just that people are important. And the people who need help the most are the people who are the most important. But it's a hard message to sell to kids in a society that doesn't really believe in that.
Has the technology run ahead of what we're willing to deal with as a society?
Yes. ... Nobody's bothered to think about what the repercussions are of trying to keep people alive longer and longer. Another bypass surgery, another transplant -- not that they're not important. They fit somewhere in the scheme of things, but I don't think they fit as the biggest piece of the pie, and right now they're far and away the biggest piece of the pie, without anyone worrying about: Well, what's next? What do we do now? How do you get them physical therapy? Will they ever walk again? Can they swallow their food? It's not a very thoughtful way, I think, of providing health care.
Ethical considerations -- when is enough enough? You must face those issues every day in your work with the elderly.
Personally, I haven't confronted very much of that at all. ... The things that drive those kinds of decisions are a group of people who has an interest in providing that kind of care. For example, if a patient or their family demands to have more chemotherapy, a surgical procedure, I want them to be in the ICU -- incubate them, put them on a breathing machine, on life support. Then the ethical issues start to arise. Is this really the right thing to do, clinically, medically, despite the fact that the family and the patient may want it? It becomes very complicated.
At the same time, if the doctors have a vested interest in providing a particular kind of care, to fill a bed, to do more procedures, to get more patients into their office, then it raises the same kinds of ethical questions. And the 90-year-old with widespread metastatic cancer is all of a sudden in the ICU for three weeks before they die. But if the patient's come to a place where they've accepted their quality of life and their prognosis, and the doctor doesn't stand to make more or less money from the kind of treatment they get, then it's easy. Then it becomes not an ethical question at all. [It] just becomes a question of helping people work through the last weeks or months of their life, and it's pretty effortless, almost no matter what they want to do.
But it's only easy for people who have somebody like you.
You're right, that you have to have an advocate. I don't know that it necessarily has to be someone like me. But it just has to be someone who's willing to listen, willing to give the same weight to the patient's opinion or family's opinion as they would give to their own opinion, which is part of that whole sacrifice thing. I was taught a certain way: "I spent 12 years, and I have these degrees, and this is what really needs to be done in this kind of situation." And the patient says: "You know what? I'm really too tired for that." "OK, then we won't do it." So I think it's a matter of listening and someone advocating.
How is that likely to happen if a patient is at home versus [in] a hospital?
... The culture of the hospital is to do something to the patient, for the patient. Then on top of that come the other layers. There's the doctor who takes care of them, and the staff of nurses who rotate every day, and all these people whose mind-set has to be the same as the patient's. Just statistically, it's impossible.
It's very easy for me to meet you at home or in my office if we have a longstanding relationship, and I get to know you and what your preferences are, and I know what you believe in, and I know what your faith is like and what role it plays in your life, all these important things, so that when you come to a certain conclusion, I can see that that's the conclusion that you would have come to. Even if I didn't anticipate it, I'm willing to accept it, because I have a lot of respect for the whole of you.
But in the hospital, it's just statistically impossible that of the 24 people who will be providing care to you over the course of your hospitalization, that all of them will somehow come together and say, "Yea, this is what we need to do."
The whole specialty of palliative care has grown up around that [issue]. They come in as a consultant and try to pull in all the disparate pieces and sit the doctors down and make sure the nurses are aware and talk to the consultants, make sure the surgeon's on the same page, and then bring the family in, and then the patient, and somehow make everybody get to the same place where they're comfortable with what's perceived to be the outcome that's in the best interest of the patient. That's very hard to do.
Beyond palliative care, do the same principles influence other doctors treating old people?
I'd like to think so, but I don't know. I don't know if that's as big a focus of geriatrics training everywhere as it is here. Palliative care here just happens to sit in the department of geriatrics, so it's very much a way of life for the geriatricians here. In other hospitals, palliative care sits in neurology. For all I know, geriatrics in that other hospital, where palliative care is totally separate, may not be that palliative care-oriented. They might be much more interested in technology, in home monitoring, let's say, and the ability to check every little vital sign of a geriatric patient without having to make them come in -- which is a wonderful thing, but that's the focus of their interest and their care.
So I don't know if geriatrics is what defines that quality. Palliative care clearly focuses on it. But more broadly than that, you could say, isn't general medicine all about that? And clearly, it's not at all.
If I had a somebody who understood my wishes, helped me navigate -- a doctor -- what difference does that actually make in the hospital?
... To run interference for a patient in a hospital is critical, and to appropriately ask for help when you need help -- it doesn't mean to be the only one who's caring for the patient -- and to develop a relationship with the nurses so that it's very open, and they feel supported, and you feel supported by them, and everybody comes to the same place as the patient slowly over time, as opposed to mixed messages and crossed signals and all the other expressions we could use to describe the mess that can be a hospital.
Visiting Doctors actually had lots of experiences like that, where we felt that our patients who -- the patients we've known for a very long time -- a clinical decision will be made that cuts completely against what the patient would have wanted or the kind of care that we've been giving, and all kinds of different things happen to the patient, unanticipated things, because of the communication. So to have a doctor who understands what you want, respects what you want, is willing to sacrifice what's medically right for the sake of what you want, is critical.
At home it's less critical, because if you're at home, [and] you don't have that environment to have to deal with, then you are making decisions for yourself. But ... it's nice to have that doctor or a nurse as a resource, because to do it on your own as a patient, even with your family, it's very complicated, and you second-guess yourself too much, way too much, and it just adds to the stress. If you get a little reassurance by phone or with a home visit, you feel much, much better about the outcome. So the roles are different. And in the end, it's sort of the same thing.
What do you mean, it's the same?
It's the same in that your role as a doctor is to protect the patient and protect their wishes, safeguard their wishes.
The new longevity: What used to be, and what's true now?
People used to die of things that today we are pretty good at treating. Also, at the same time, people, as they got older, remained part of the family. Even if they were a little bit slower or a little bit clumsier, my sense is that they were helped to feel like they were still a functioning part of the family. So even if Grandma's eyes were going, she could still sit in the kitchen and snap the beans. ... And then people passed away.
Today it's the same, but very, very prolonged, so that instead of lasting two or five years, it can last five or 10 or 15 years or longer. At the same time, families are less able and less willing to find something for that generation to do: less able because the pressure on families today is immense -- the financial pressure, the pressure of getting kids competitively through school -- and then less willing. Life is fast-paced; everything is a sound bite. So to have someone who's a little elderly and maybe kind of doddering around the house, who needs a lot of help with stuff but can do simple things, it's just not as accepted. Life is way, way too fast-paced to accommodate that.
If health care was exactly the same as it was 50 years ago, but the pace of life was what it is today, we'd have the same problem, even if people were only living into their 60s and 70s. If we pushed ourselves as fast then as we do now, how could we possibly take those people into our homes?
In terms of medical demands with prolonged life for older people, what is ahead for us?
An example: ... I had a patient with severe Parkinson's disease, and one of the manifestations of his Parkinson's was that he could no longer swallow. I had this long conversation over the course of weeks with his family. Basically what I tried to help them understand is, his body can't sustain life anymore. He can't swallow food, so if we choose not to feed him, he'll die from his Parkinson's disease. If we choose to put a feeding tube into him, he won't die now. We'll have to wait for a medical catastrophe. It will have to be an enormous, infected bedsore; it will have to be a stroke; it will have to be overwhelming urinary infection, aspiration pneumonia. It's what I tried to term a medical catastrophe, because we've actually caused it to happen. We've let the person live long enough that the only way for them to die, because we didn't let them die from their natural illness, is some medicalized catastrophe.
When I explain this to families, I try not to attach any value to it whatsoever, none, because I don't have to live with this person, and I don't have to rush them to the emergency room with one problem or another. But with no value added to the decision, it's either going to, again, naturally happen because of the illness that they've contracted from whatever reason people contract illnesses, or it's going to be some complication of a medical treatment. So if there's a feeding tube and they live another six months, long enough to get a bedsore that goes down to bone, that gets infected, in my mind, that's not worth it.
But in a lot of families' minds, that six months was totally worth it. And that's totally fine, as long as they understand that existentially that's what they've chosen to do. They've chosen to take a life that would have ended and extend it and wait for a medical problem to end it.
Our health care system is designed for short-term acute care, not long-term care. Explain Medicare, Medicaid and what pieces are or are not equipped to deal with the care needed by old people.
I don't know if it has as much to do with Medicare and Medicaid as it has to do with the way that we train doctors. That's probably at the heart of it. ... The reality is that in medical schools, we don't train the students to provide continuity of care over the course of many, many years to people with chronic illnesses, whose most important need is probably communication and empathy. We don't train them to do that.
We train them to understand the basic sciences, cutting edge, lots and lots of procedures. We train them to diagnose, to fix things. And that's very exciting. You could even go so far as to say that we don't even attract the right kinds of people to medical school, because the people that we attract to medical school are already the ones that have that mind-set -- "I want to get my hands dirty; I want to fix things; I want to make a lot of money; I want the prestige" -- because that's how health care is defined. Maybe it's the social workers who we should be recruiting to medical school, or the nurses -- students with a different mind-set.
Traditionally in the residency training period, the exposure that we get to geriatrics patients as such, most of the people in the hospital who are sick are elderly, and people are coming in very, very sick, nowhere near their functional baseline. So the person who is going to the hairdresser once a week and going to the supermarket every other week and has pneumonia comes in unable to speak, unable to swallow, incontinent, just looking like a pile of old person, and not like a human being anymore. So who wants to do that? By the time you've barely gotten them better to the point where they can sit up in bed, out the door they go.
You never really see the peak. There's not much attraction there for someone who was taught in medical school to look for the exciting and the new and the interesting and the cutting edge and the science and the procedures. It all gets left way, way behind.
The medical students here at Sinai get a taste of Visiting Doctors. They get a month in the outpatient geriatric practice, so they get to see functional elderly people coming in to the doctor, representing themselves, advocating for a change in medication. That's a big deal. Just this year they started something called a Seniors as Mentors [SAM] program, where the students, from the minute they get to medical school, are paired up with a community-dwelling senior citizen. They kind of become buddies at first, just buddies, and then slowly advocate for their health care over the course of a year or two.
Those kinds of experiences, I think, will open their eyes, not just to geriatrics, but to the fact that most of the people who are going to need most of their care are going to be the elderly or the very elderly. And they could do that in general medicine, too. They can do it in cardiology, too, as long as they're aware that it's an important subset of their patients, and they can't just be treated like every 40-year-old on the street.
Aging is the great equalizer. But to what degree is that untrue?
A very nice part of the program is that students who go out see that when you're very elderly and debilitated, [income] makes no difference. A duplex on Lexington or the projects in Spanish Harlem makes no difference whatsoever. Homebound is homebound. And the fact that they see the same doctors taking care of all of those patients sends a very important message.
Aging is definitely the great equalizer. The thing more than anything else that buffers that experience is family. And that cuts across all grains.
We've had lots and lots of more traditional nuclear families who have not so long ago come from the Dominican Republic or from Puerto Rico or from Honduras, or they're African American[s] [who have] come from South Carolina, whose families have remained tight-knit because that was the culture of family, and that's what has saved the person, the patient, and is what sustained them in the community.
And [there are] lots and lots of people who are well-off and have means and lots of resources but don't have family who can be that involved. I don't mean to say that they're not interested, ... but they're upwardly mobile, and so they moved to the great opportunity that was waiting for them in Dallas or somewhere else, and they're on the phone, and they try to keep in touch and manage things, but it's very, very different and more tenuous than actually being there and being present.
And why is that? Why is there that dread and horror? I guess I wonder out loud whether there isn't something else about nursing homes, being there alone and having people taking care of you who don't really know anything about where you've been or what you've done or what you stand for or how much you've fought for -- just all the places you've been in your life. And to have that disembodied care, even if the nurses are great, even if the staff-to-patient ratio is phenomenal, maybe it's perceived as a little bit cold and distant, and that's what makes people a little bit afraid of the whole experience -- and the fact that a lot of them just are really not nice places to be, and the care is not fantastic.
But I feel like there's something more to not wanting to be in the nursing home. There's a sense of being marginalized and, as you said, being stored away somewhere, out of everyone's sight, even if it is a relatively nice place.
It's interesting that you mentioned it, because I realize as I think about it that I spend at least half my time, when we have students with us or residents, at least half the time on every visit, before we walk in, preparing the trainee by telling them the story of the patient. The story, of course, includes their medical diagnoses and the surgeries they've had and the medications, but also some precious little pearls about who they are or where they've been and what they've done, and they're an artist, and World War II -- just all these little stories that help create a context for the student walking in and seeing someone for the first time.
It doesn't exist at all in nursing homes. It doesn't exist at all in hospitals. Who the hell has time to ask those kinds of questions? I think a lot of patients are willing to trade off some cutting-edge medical care for the sake of that human contact.
Are you disturbed when you go in nursing homes?
It was probably 10 years ago, the year I was chief resident, I did some moonlighting work in several nursing homes around New York City. I did it for about six months, and then I just couldn't take it anymore. I mean, the system is not set up for you to be able to spend any kind of reasonable time. The more patients you see, the more boxes you tick off, the more money you get. It was so dehumanizing to have to go from room to room to room, and even the patients who didn't have problems that the nurses wanted you to address. After three years of residency, it was more than I could bear.
How do you guide, advise, witness the end-of-life issues? Can you talk about the kinds of decisions you have to face and the incremental decisions a family has to make?
For the most part, our patients are very elderly, and probably about a quarter to a third die every year. Some of it is very simple and basic: You have to introduce the concepts and things like paperwork, a DNR [do-not-resuscitate order], a health care proxy.
It's a little bit hard to do that out of context. If someone's not dying or not terminally ill, you have to prepare them for why you're even discussing this. Yet if you wait for the context, it's really too late, because then the stress of being terminally ill or dying makes it a little bit harder for people to carefully weigh what they'd like to see happen to them in that stage of their life. Of course people sometimes make one decision, and then, when the time comes, waffle back and forth. That's perfectly fine. If in the end you believe that it has to be what the patient wants, then that's perfectly OK.
A lot of people have never anticipated that they need to consider appointing someone [as] a health care proxy or that they need to specifically talk about what their wishes are. It's not enough to say, "I'd really like you to be my health care proxy because I trust that you will do what's in my best interest." The next step is to, at some point, in a quiet moment, over a cup of tea and biscuits, sit down and say, "Look, if something happens to me," and you have to sometimes even play out the scenarios for people, because generalizations are helpful, but as the proxy, you have an enormous responsibility. And it's almost never going to play out in the general, vague way that's described on a form. Those decisions are difficult, and you have to walk people through them and give them plenty of time to work it through on their own.
And then, when reality hits and decisions have to be made, the playing field shifts markedly sometimes. If someone rapidly declines and passes away, there's nothing much to talk about because the trajectory's so clear and everyone knows: Just stand back and let it happen, and make sure they're comfortable.
But often it's not that straightforward. The process can be very, very long. People can linger for a while. It can be complicated by severe symptoms, pain, shortness of breath, nausea, itching -- things you totally wouldn't expect would drive people absolutely nuts towards the end of their life -- and you have to manage those symptoms. But aside from just managing the symptoms, the people who are watching this thing play out are under an enormous amount of pressure, because they're actually seeing it happen, and the kinds of decisions they have to make sometimes are completely unexpected.
If you decide not to put a feeding tube in Aunt Bessie and she doesn't eat, how long will it take her to die? Three weeks? Four weeks? That's no joke. Try to close your eyes, and you picture yourself. She lives with you in your living room; that's where the hospital bed is. She can't eat, and every day -- and we're not talking at all about someone who's agitated or calling out for help. Let's say it's someone who's perfectly calm and peaceful. But every single day, day after day, and nothing's happening, and you start to worry: Maybe I did the wrong thing. I mean, my God, it's been two weeks, three weeks, and she kind of looks the same, and she's not dying. Her blood pressure's good, and the doctor comes every week, and the nurse, and they say, "Well, it might take a little more time." So you start to see what the pressure is like, and to support someone through that, it can be very, very difficult, even when it's peaceful and calm and comfortable and quiet and everything is OK.
The reality is that sometimes you question yourself, too. … Should I really have told them not to put a feeding tube in? Should I maybe have tried to get her fed a different way? Should we have adjusted, gotten a speech therapist? -- all these other options that you excluded back then. So it can be very messy.
One of the rules that I try to keep in mind for myself is that in very, very difficult situations toward the end, and really only when the patient is no longer aware of what's going on so much, and the family's struggling with a particular decision -- should we, shouldn't we?; should we, shouldn't we? -- I actually will reassure the family that a decision that's going to help them deal with whatever happens is better than the decision that's made best for the patient. That comes out in a weird way.
If the patient doesn't know what's going on anymore and is clearly dying in days or weeks, my sense of what's going on is that as long as the patient's comfortable and I can keep them comfortable, the family has to deal with the ramifications of the kind of care they provided. If they really, really feel like they want to do something that I think is medically probably not the best thing to do -- won't hurt the patient, but maybe it's a waste of time -- I'll absolutely support their doing it, because if they don't walk away from the experience having felt like they've done what they needed to do, what they should have done, that peace of mind, then it's a huge failure on our part, even if you, again, have to compromise or sacrifice what you believe is the best way to go. It can get very complex.
Can it get gnarly in terms of when to give an antibiotic, when to advise an operation?
The choices that come up over and over again are feeding tubes, absolutely; intravenous hydration -- "Can't we put an IV in and just give them fluids and some nutrition?" -- is a very important decision that people have to either come to terms with or not; going to the hospital at all.
You struggle with these decisions until one day you come across a patient who says, "Doctor, I don't want to go to the hospital under any circumstances, no matter what happens." "But Mrs. Jones, even if it's life or death?" "I don't want to go to the hospital, no matter what."
Then the DNRs -- whether to call 911 in the event that something acute happens or they essentially die or not -- is another important branch point. Antibiotics, not so much. I mean, it does come up. But again, antibiotics are something that if a family feels really, really strongly they must have antibiotics, and I know that this is a terminal aspiration, then I'll give antibiotics. Why would I fight that fight then?
But over other things, like intravenous hydration, I wouldn't back down, even if the family became upset and disappointed, because I know that the outcome for the patient will almost certainly be bad. They'll be adversely affected if I try to keep them going for a couple of days or weeks more with an IV than if I convince the family that it's not going to provide them any comfort or any nutrition and that if we put it in, it's going to make things significantly worse. There are some places where you draw the line.
At points, are you uncomfortable with the power you have?
The part that worries me and that sometimes I try to talk to residents about, but it's hard to get this across, is that it's much easier to let someone die than to not. When you're a palliative care person and all focused on comfort, and no one else is, ... the reality is that I've completely -- "abandoned" is a bad word -- but I've completely abandoned the need to fight for some more life. I don't need to worry about surgery, and I don't need to worry about chemotherapy; I don't need to worry about radiation. I don't need to worry about another diagnostic procedure. So I have this comfort zone a, intellectually, and b, on a very selfish level, when they die, it's over and I've done a good job, and that's it. I don't have to think about it anymore, and I don't have to answer phone calls. ...
But there's a little bit of reality in that, too. You struggle and struggle and struggle along, and if the patient sends out feelers about wanting things to end, you might jump a little prematurely, say, "OK, here we go. Now I'm getting my closure," and I get to tuck this thing away neatly, and I feel good about myself, and the family feels good, and the patient's OK with it -- [but] maybe I should have worked for a couple of more months. So there's a little bit of discomfort with that. You have to somehow try to always be brutally honest with yourself, and clearly sometimes you fail. It's hard to maintain perspective on all of those different variables.
How do you know when enough is enough?
The easy answer is that you know enough is enough when the patient says, "Enough is enough." But that's not so easy. You have to make sure that the patient knows that what they're saying is "Enough is enough," [and that] is pretty final. That involves multiple conversations spread out over time. It involves pulling in family; or if there's no family, friends; or if there are no friends or family, the nurse who's helping you take care, some group of people, some network around the patient, to help be very, very clear that that's what they want to do.
At home it's much easier to have discussions about end of life. That's completely taboo in the hospital and anywhere else, for obvious reasons. So patients will definitely feel more comfortable asking you those kinds of questions. That's when, of course, you have to be the most careful, the most wary, and make sure that you've asked enough people and you've presented the patient's story to enough people, you've pulled in the family, there are as many people involved and present for them as possible, before you say, "OK, I agree that enough is enough." That can be hard to do if the first time the patient says it, you totally know and believe that that should be the case.
Assisted suicide: Does it come up? How does it come up?
The way that it's come up for me mostly is that people are very smart, and they have a lot of insight, and they prepare you, as the doctor. They say, "Look, when this happens, I want to be very clear: I don't want you to prolong my life," or, "I want you to make something available for me that will help me to be more comfortable, end it when I want to," or even sometimes, "Will you help me to do it when the time comes?"
I don't know if it's ever been the case that in the heat of the moment, in the last few days that all of a sudden, out of the blue, someone will say, "End it for me; end it for me." It really hasn't happened. Maybe in one case like that.
But the rest of the time, they've thought about this very, very carefully. They've been sick for quite a while, even if they're not 80, even if they're 30 or 40, but they've had MS [multiple sclerosis] for a long time, or they've had cancer for a long time and they're only 40 to 45 years old, and they've had a lot of time to think about this, and they know how important independence and control is in their life, and they're not willing to give up on that.
Where is it not so clear?
It's more difficult when patients can't speak for themselves, as you said. It's more difficult when they want you to take a more active role, as opposed to helping them to die peacefully and comfortably. It's more difficult when you're not so sure that they're making a clear decision because they're depressed, or because there are other competing interests. There's that whole burden thing that comes up again, and people don't want to live too long because they know what their kids are being put through.
You have to be very, very careful, not just for legal or ethical reasons, but because that may be the only signal they send you that there's other stuff going on that you haven't paid attention to, in the family dynamic and things they're worried about. So it's never clear-cut, never. And when it seems like it's really, really clear-cut, that's when you need to worry the most; that you don't jump to that conclusion; that you take a big step back and say, "OK, start the process very slowly for me, and let's talk about why and when and what and how and where. " ...
What are the various ways of helping? Is it tricky?
Helping can mean anything from making sure there's enough morphine around to control pain. Helping can mean what we sometimes call "terminal sedation," so when someone has refractory pain, and the only way to control it is to completely sedate them, sometimes you do that and it ends their life, but it was because there was no other way to control their symptoms. And helping in other instances, with other people, can mean other things, too -- actively helping someone, providing them with the medication that they can take when they feel that the time has come to end their life. There's a pretty wide spectrum of help. The patients will pretty typically ask you specifically for what they think they need, and that's also something that has to be negotiated.
How do they do that? Do they literally get specific? What do they say?
They say, "I want you to give me enough medication that if the time comes and I need to end my life, I can do it." People have different expectations, too. People who aren't in medicine don't understand how that process works. It's just not that easy to end someone's life. There are vanishingly few medications that are that lethal. There are a couple, but vanishingly few. Then there are some medications that people think will almost certainly end their lives, like lots and lots of morphine, but sometimes it doesn't. We give people in hospitals sometimes enormous doses of morphine to try to control symptoms, and not only do we not control symptoms; we certainly don't end their lives. So it's a little bit more tricky than just that.
It's also easier to help support the patient by giving them a big bottle of morphine that they are already using to control pain, and everyone sort of understands the big bottle's there, and if the patient decides to take an overdose of it, what can you do? That's also a far cry from specifically prescribing something that you know is a lethal medication that the patient has no other use for.
How disturbing are those things for you personally?
Not at all. Not in the least, not in the least. Sometimes they're challenging because you need to tease out what the patient really means, or what they're trying to tell you that they can't tell you. But when you've come to terms with it yourself, when you've come to terms with what the patient's telling you, from my perspective, it's not disturbing at all.
Because of these experiences, I've had these discussions with my wife, too, about my own end, and she and I are at polar opposites in terms of what our expectations are. I would clearly want to be given that option. If I were terminally ill or I had a degenerative, progressive illness that was going to gradually take away all of my function, I would want to be able to opt out. I want that control. I don't know whether I'd ever use it, but I definitely would want it. And to her, it's just inconceivable that someone could think like that. Life is life.
Quietly, physicians help people end their lives more frequently than is acknowledged publicly?
I think it's very true. There's even been some literature in terms of the acceptance of this kind of process and the willingness to be a part of it on the side of doctors.
It's not only very taboo, but it's basically illegal, depending on how you define it. Again, giving someone a bottle of morphine that they're getting anyway, and all of a sudden the family's given them everything to help end their lives, is a risk that we accept in the course of providing care. Further along the spectrum, there are things that one can do that are clearly still illegal in most states in this country.
But it happens quietly out there, maybe in the same way that everybody still makes home visits a little bit, once in a blue moon, because they know that it's important, because when you're faced with the circumstances of a particular patient who desperately needs a home visit, you can't really say no. You see them on the way home, before you go home to do homework with your kids or eat dinner, so it becomes relatively easy.
I think every doctor -- not every doctor -- many doctors in their practice are confronted with situations like this, where patients are really in desperate need. Certainly hospice doctors do, or doctors who are involved in hospice, or oncologists, doctors who take care of people who are terminally ill. Geriatricians will see this over and over again. And every once in a while, a particular patient will capture your attention, and you'll be able to relate to them in a way that makes it easier for you to help in that process.
Family seems the key.
Family is a key. I probably would be willing to go through a lot of nasty medical stuff in order to still be aware of and interact with family. That would be a very fair tradeoff.
It's important to have reasonable expectations and to understand what the range of possibilities is out there, and not make the mistake of focusing on the one idealized goal, which we do all of our lives: the perfect college, the perfect spouse, the perfect kid, the perfect job, the perfect car. It's the perfect everything. You never really get the perfect. You get something pretty darn close, and you have to learn. That's how you grow up and become an adult. You have to learn to adjust as time goes on. ...
So you can become the idealized very elderly person, but it has to be because you understand what a reasonable expectation is, and then the range of what's out there and available. You take what you're given, and you make the best of it. When your hearing starts to go, you find healthy ways to cope with that. If you need help from your daughter-in-law, then that's where you go for it. All these little things happen, and you have to be able to roll with the punches to some extent, and not stay fixated on the 90-year-old surfer. That's a huge mistake, because that's filled with nothing but disappointment.