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deciding when enough is enough

photo of gleason

Visiting Nurse Service of New York

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…How do you know to not just let somebody be?

There have been many times when we had a patient that was near death, and we could have gotten more aggressive with antibiotics, … maybe prolonged their leaving. But in some ways, that's not always the best approach, because if they've made it clear that they don't want to be kept around by aggressive measures, then a good death for that person would be to go out as gently as possible. So sometimes [if] it's clear that that's what they want, then all we do is medicate them for pain and keep them from feeling pain.

There are other things that happen, too, when someone's nearing death. They may suddenly become very anxious and start breathing really quickly. We can give them medications to help with that so that they don't feel that anxiety, almost like their lungs are filling with fluid, or whatever it is.

I feel that the team that we're working with now is very, very good in hospice care and end-of-life care. We guide everybody through the process, making sure they understand what's ahead for them. …

Our goal is to make whatever time the person has left be the best and most comfortable that it can be. Oftentimes we're not talking about [a] cure, because a lot of these things have been going on for years and years and years, and they're never going to go away. But what we can do is try to minimize the effects of whatever the illness is, so that the person cannot put it aside, but can live with it to the point where they can still enjoy the time that they have.

Without you and the team, what would it be like?

It would be a lot harder for them. Sometimes family may have a plan; the ill person may have spelled out what they wanted, but then at the last minute the family can't do it because they get nervous. They've said to me things like, "Well, if I give my mother this amount of Roxanol, won't I be killing her?" Roxanol is a liquid morphine. And we have to explain, no, that's not killing her; that we're just giving it to her to help her be calm, to help her not feel pain.

It's hard for family to understand that when a person is nearing death, they may not want to eat or drink. They may just totally stop eating and drinking. On several visits, I've had to explain to them how they should not try to feed her chicken soup, because it's really to make them feel better -- they think this person must be starving; they must feel hungry. Most of the time …. they don't feel that; they don't feel hunger. Their body is shutting down. It's very hard for the family to understand that.

What happened would be that they would sometimes rush the person to the hospital at the last minute, because their anxiety would get the better of them, and they would forget what their goal is. So they need sometimes our team just to coach them through the process until the person actually does die.

photo of muller

Dean of medical education, Mt. Sinai Hospital, New York City

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… [O]ften [the process of dying] is 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. …

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.

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.

photo of kass

Chairman, President's Council on Bioethics 2002-2005

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For family members, when will anyone know when enough is enough?

The real anguish for people who have been caring for debilitated elderly a long time, in the age of miracle modern medicine, is this: You never want to say, "I wish he were dead." At the same time, you don't want to be complicit in what looks to you increasingly as if you are putting your father or your mother on the rack of a miserable and prolonged existence. You don't want yourself to be somehow getting in the way of any kind of graceful exit at a timely place. So it becomes harder and harder to know when it's time.

But there are people who somehow have the feeling -- when they're still in their powers -- they have their feeling when the time is come, and without taking poison or doing assisted suicide, they surrender in some way. This doesn't happen in all cases, but one hears enough about it to know that there are people who still can feel that the time has come, and they let go. There are other stories about people who wait for a spouse to give permission to die, who want, in a way, to be eased out, but who feel that to go will be to betray their spouse of 50 years, and they need some kind of gesture: "It's OK, my dear. We will meet in the by-and-by."

The difficulty comes when the person is no longer in a position to have some kind of hand in the end of his or her own life, and the task falls to those of us who have to decide: Well, is it pneumonia one more time, or shall we say, "Mother, you don't have to go to the hospital this time if you don't want to"? This becomes exceedingly difficult if every technological intervention which is not unduly burdensome becomes treated as morally obligatory.

I think it's terribly important that we try, in this morass, to find some guidance that doesn't require us to say "better off dead" or "unworthy life -- off the stage," and yet begin to get a feel for when the time is right, and we say in the name of the loved one, of the worthiness of the very life here being treated: "This is enough. Go to your maker with our blessings."

photo of coch

General practitioner, Alleghany County, N.Y.

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…One of the best things I've done in my whole career happened recently, which involved a complex patient. She was elderly. She was perfectly healthy, and she had surgery for cancer, and then she had some postoperative treatments, and then she developed this mysterious abdominal problem. ...

It was clear to me that she was not going to get better, and I suggested to her family that what they ought to do, when they proposed [another] surgery, is don't have the surgery; bring her back down here and just visit with your family, and try and have some good time before she dies. Nobody would say so, but I thought she was going to die, and I certainly thought she was going to die if she had an operation.

Her family did bring her down, and she stayed here for a week. All the family came in, and it was some real meaningful time for the family. They switched from a "get better" mode to that "this is it" mode. I think that was all worthwhile.

Then I sort of got cold feet, too, and we did the operation, and she died a few days after the operation.

But I don't regret doing that. ... But I certainly wouldn't do that for everybody if I didn't know the family. It was sort of an outrageous thing to not do what the specialist recommends, ... but I think it was a good thing. It made no economic sense at all. Medicare will pay for an ambulance to go to a higher level of care, but they won't pay to go to a lower level of care, which [is what we were doing]. So the family had to come up, on the spot, with $2,000 to do it. ...

What does it mean to die a good death?

Well, you know it when you see it, I think. You certainly know a bad death when you see it. A really bad death is where you're actively being treated with blood tests and X-rays, with no attention paid to how you feel, right up to the end. That's a very bad death.

A good death, I think, is where you're in a physically comfortable place, where you don't have a lot of intrusion of outsiders, where your family can gather and be with you. They can sing if they want to; they can get in bed with you if they want to. You can have your dog there if you want to. You can have as much drugs as you need to relieve your symptoms. ... I think there is such a thing as a good death. ...

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posted nov. 21, 2006

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