Tim Quill on voluntary stopping eating and drinking

Eric : Welcome to the GeriPal podcast. This is Eric Widera.

Alex : This is Alex Smith.

Eric : And, Alex, who is our special guest today?

Alex : Today we have Tim Quill, who is well known and probably known to all of our listeners. He is a well known palliative care physician from the University of Rochester in Rochester, New York, and past president of the American Academy of Hospice and Palliative Medicine, researcher, among many other great things. Welcome to the GeriPal podcast Tim.

Tim : I’m very happy to be here.

Eric : We’ve got an exciting topic to talk about today, voluntary stopping of eating and drinking. A JAMA IM article that you wrote. But, before we go into that article, do you have a song request for Alex?

Tim : I have a random thought about Knock, Knock, Knocking on Heaven’s Door.

Eric : There was no preemptive discussion about that one.

Alex : No, never.

Eric : Never. We would never. [Singing].

Alex: So, voluntary stopping and eating and drinking among people with serious illness, this is a weighty topic.

Eric: I got a question. How did you get interested in this topic because you’ve written about other very similar topics before?

Tim : I think this comes up as a topic as you are searching for options for people who don’t have good options. Again, we’re talking about people at the very, very end of life who are saying, “You know, I’m getting near the end. I’m not sure I can put up with this any longer. I’ve been dying a long time. What are my options?”

So, physician assisted death has gotten a lot of press around this but a lot of these folks might not even qualify for that. We’re searching for ways to help them that might be acceptable to society and to the profession and this is one of the things that came up.

Alex : Do we have any idea how common this is currently?

Eric : And when we say “this”, what actually is voluntary cessation of eating and drinking?

Alex : Maybe we should start there. What is voluntary stopping of eating and drinking?

Tim : So, I’ll tell you first what it’s not. It’s not the normal kind of loss of drinking and eating ability that comes at the very end of life. These are also people who are very sick but they are physically capable of eating and drinking, but they are tired of dying. It’s going on too long. They make a willful decision to stop eating and drinking in an effort to hasten their death. Generally takes about one to two weeks, depending on how sick and debilitated you are going in, and it also can take a lot longer if you’re not really really disciplined because not drinking is really hard.

Eric : So maybe taking a couple sips here or there if you have a really dry mouth?

Tim : Yeah. Truthfully, you really have to spit it out if you really want it to go as quickly. It can go not just weeks but months. I have had patients who were sipping here and there and trying to do this and it went on way too long. So, can sip but then you got to spit it out. It’s really for people who are super disciplined, generally people who like to be in charge or in control of their lives and who don’t have probably the options that they would like to have.

Eric : Alright. So, for most states for physician assisted dying, physician assisted suicide, whatever we want to call it, there’s a prognosis … In the state of California, you have to have a prognosis of less than six months. Are we thinking the same for voluntary stopping of eating and drinking or is it eligible for others?

Tim : I think in general you’re thinking the same thing but it is potentially eligible to others. Probably the most common situation which would be on the edges of this prognostic issue is somebody who has early dementia, sees down the road something that they are dreading and don’t want any part of. They need to act before they really lose capacity. So, again, this would be controversial, but their prognosis might be, if they were given ongoing support, quite a big longer than six months. They could still do this within most people’s thinking, including mine.

Alex : I also wonder if it’s a potential option for people with other neurodegenerative diseases. I’m thinking in particular of patients who reside in states where physician aid in dying is legal but you have to be able to self-administer the medication. Right?

Tim : Yeah. One of my early cases where we did this was a patient of mine with ALS. He had had a brain tumor about 30 years ago, had radiation, did very well, big motorcycle rider. But then, developed a degenerative brain disease that looked very much like ALS. He went along for a very long time but then wanted to have some option to escape and eventually chose stopping eating and drinking, which he did on our palliative care unit. For him, eating and drinking was quite an ordeal. Even if he lived in a state where assisted dying was legal, I don’t think he could’ve self-administered sufficient amount of medication to do it. Again, it was an option for him.

Again, in these cases, we are trying to find the least bad way to respond. None of these are particularly elegant, but they’re for people who don’t have good options really. None of the options are particularly uplifting in a certain way.

Eric : You call these “last resort options” in the paper. Can you give our audience a idea of what are the last resort options?

Tim : Sure. There are a number of them depending on where you live, but the ones that are easiest to comprehend are if you’re on life support you can go off of life support even if your desire is to die sooner. Ten percent or 15 percent of people on dialysis die because their situation changes and they choose to stop dialysis. So, that would be stopping life support, which would be a last resort. You wouldn’t want somebody to do that on a bad day or when they’re going through a period of depression. You want people to carefully think it through.

Then there’s palliative sedation. Again, mild levels of palliative sedation probably don’t hasten death at all. They’re just part of normal palliative care. But, when you get into heavy sedation for things like delirium or things like maybe bleeding out toward the very end of life or those kinds of things, you’re really talking about something that may hasten death by a small amount. Again, you want to have safeguards for that. The safeguards for sedation are different than this because this is an option for people who lose capacity.

Then there’s stopping eating and drinking. There would be physician assisted death in the states where it’s legal. In other states it may be done under the radar screen much more risky. Then, if you happen to live in Canada, all of Canada now, you have the option of voluntary active euthanasia. So, there are a range of options. Safeguards are quite similar for these, although they may be different in some of the details. But, they’re all, I say, last resorts because they really all end in a patient’s dying sooner.

Alex : Focusing in a little bit more on the voluntary stopping eating and drinking. What are sort of the aspects of voluntary stopping eating and drinking compared to some of these other options that might be attractive to some people and what are some of the aspects that … I had one patient who said, “What about the eating part? Can I continue eating?” I said, “No, that’s actually part of the voluntary stopping eating and drinking.”

Tim : If you’re a foodie, this is going to be a hard thing to do. But, point in fact, most people … The stopping eating is relatively easy because you get ketotic relatively quickly and then you lose your appetite. On the other hand, the stopping drinking is very hard because you get really, really dry and your desire to moisturize, to get something wet in, is very strong so you have to really take it in and spit it out. So, again, it takes a tremendous amount of will power to do this.

It also takes a while. The good part is in that first week or maybe a little longer, whatever mental capacities you have, they’re still there. So, there’s a good opportunity for a lot of the good hospice goodbye stuff, saying goodbye to family and making contact and making amends and all that. Then, the later phases gets a little tougher because you tend to become delirious. You lose the ability to maybe think as clearly. Again, tricky part to this is, as you lose capacity, you might then think, “I’m pretty thirsty and I’d like to have something to drink.” So, you have to sort of think through those kinds of challenges in advance.

It’s not fast enough, though, for people who are having severe, overwhelming physical suffering. Right? It’s just … Two weeks that it takes is way too long. So, this is really for people who are tired of dying, by and large.

Eric : I can only imagine the challenge of somebody who is absolutely 100 percent sure they want to go ahead with this, they get delirious and then they’re requesting food and fluid. How do you handle that? I can only imagine in a nursing home, the drive for people just to give them fluid, or a caregiver at home. How do you deal with that?

Tim : I think because it’s something you can anticipate, first of all, you talk it through in advance. “How should we handle it if you lose the ability and you want a drink?” You try to make a decision in advance with a patient and family. “How are we going to handle this?” … and the staff, for that matter. Now, again, if it’s your palliative care staff, you probably have more of an advantage of really having a long term relationship and thinking it through. Whereas, if you’re in a nursing home and they’re trying to do this there, it may not be doable there because it so goes against the culture of most nursing homes.

Having said that, you think it through in advance. If a patient, though, really says, “I’m changing my mind. I’m really thirsty,” you let them change their mind. If they then get un-delirious and say, “Geez. I really wish you didn’t do this.” … So, sometimes people have to try this a couple of times before they make it through. I don’t know that you can have 100 percent hard and fast rules here. You’re trying to do the best you can to keep the patient in charge about what’s going on.

Eric : Has anybody ever gotten mad at you for actually giving some fluid and then coming out of it again and wondering, “Why did I just go through all that?”

Tim : You know, how many cases have I had in my career? Maybe five or seven cases in my career, and it’s never happened in mine. But, I do know of cases where it has happened. I also know of cases where people have, these are with colleagues of mine, where they for whatever reason either weren’t clear enough with the patient or the patient couldn’t stick with the program, where it really went on way too long. I think that’s a disaster. I think there’s added suffering that goes with this. You just don’t want to go through that unless you’re really clear about what you’re getting into.

Eric : Going back to Alex’s first question. How often does this happen? Because, I’m thinking back in my own ten year career in palliative care, I think we’ve seen it once or twice where we’ve formally called this voluntary cessation of eating and drinking. Is it just happening a lot and we just don’t know about it or is it just really rare?

Tim : I think it’s fairly rare. It’s fairly hard to do. I think, also, people who don’t know a lot, don’t know it. So, there’s a question about, let’s say you live in a state like New York where I live and somebody would really prefer to have physician assisted death but you can’t do it because it’s illegal or you live in a place where it’s legal but you can’t do it because you can’t live with that. Do you actually tell people about this as an option or should you withhold that information? Again, some of that will turn on your own ethical stance on whether this is permissible. Is this in the realm of something that doctors should support? Again, does a patient then have to discover it for themselves? It seems to me that’s pretty unfair because we’ve done a lot of thinking about this and these are folks who are very desperate to find some kind of a response to their situation.

Again, like with physician assisted death, many people with knowledge that they could do this, choose to live a lot longer but they don’t feel trapped. This is another one of those escape valves that you know you could initiate at a future time if you want to do it. Now, if your disease is dementia, that’s tricky because if you postpone it too long and you lose capacity, then you really can’t do this. So, there’s a little bit of a catch-22 with dementia.

Alex : You mentioned earlier the role of palliative care in these cases so I’m interested to hear more about the role of palliative care and hospice, in particular, in caring for some of these patients, particularly those patients who have a prognosis of longer than six months. I’m thinking about hospice here. Until they stop eating and drinking, and then their prognosis is less than six months. What, ethically and in practice, are hospices doing in those situations?

Tim : So, first of all, whatever your prognosis is, if you’re thinking about this option, somebody with serious palliative care experience should be involved with you because most people think about this stuff and the answer most of the time is intensifying palliative care. Right? Most people want to know there could be an option, you intensify palliative care, it sort of fades into the background. Again, when people are thinking about this in earnest, make sure they’re getting first rate palliation. But then let’s say they decide they might want to in the future and then you get down to the “I want it now” situation. Let’s say they still don’t qualify for hospice because they’re not more likely than not to die in the next six months if their disease follows its natural course. Well, what we generally do is, again, we go through this big consent process, second opinions, and then we start the process. Once we start the process, we get hospice involved because then their prognosis is two weeks.

Not all hospices will do this. Our hospices, because we’ve talked it through with them and they’ve now had a couple of cases with us or maybe even more than a couple if you look at the community, and so they kind of know what to expect. Sometimes they go to an acute hospice unit. Sometimes they go to an acute palliative care unit. If you go into an acute unit to do it, you’ve got to get the whole staff thinking it all through and make sure they can support. Can the staff conscientiously object individually? There are a lot of issues doing it in an institutional setting but it can be done.

We do a lot of other really tough things in institutional settings like palliative sedation to unconsciousness. If you can do that, if you can talk that through and think it through, you can talk through and think through this, in my opinion.

Alex : Many of the symptoms that hospice and palliative care providers might be treating here are thirst, confusion, I would assume?

Tim : There’s the symptoms before it’s getting started that are motivating the decision and then there’s symptoms that get added on because of this process. Again, the symptoms beforehand tend to be more on the … It’s not overwhelming pain or shortness of breath. It’s not a physical emergency. It’s more tiredness of dying. It’s more debility. “I can’t stand this anymore. I feel like I’ve gone on way longer than I want to go.” Or, “I’m so fearful about the next phase” in the case of dementia. So then, that’s that part of the assessment.

Then there’s, once they get started, and again, then it becomes thirst in the early going, increasing debility, and potentially confusion.

Eric : How do you manage thirst? That seems like a very tricky one?

Tim : There’s artificial saliva. There’s different kinds of water solutions. But, the key is, rinse your mouth out and spit it out. Rinse and spit, rinse and spit.

Eric : I’m guessing we’re also restricted on some of the treatments that we have. For instance, like pain, you’re probably not going to be starting an IV morphine drip because that gives them artificial hydration. Is that right?

Tim : Yes. Well, at least on our palliative care unit, as people are approaching … In the sicker inpatient units, you have a lot of people who are on a lot of stuff of different kinds. They are suddenly dying and sometimes all the stuff we’re giving them to palliate them is prolonging dying. So, we are then super concentrating, talking to our pharmacist about how can we get the key ingredients here in the most concentrated form so we don’t prolong this process. Now again, if it’s a good process, they’re enjoying themselves, then that’s fine prolonging it. But if they get to this end stage, we’re trying not to do that.

I think it’s the same issue. A patient that we allowed this option recently was on a lot of different medications for heart failure and other things. We peeled back a lot of that. We tried to make judgements about which pieces of that were really necessary to keep her comfortable. Then, as she really got sicker, we peeled the rest of those off as well. So, you’re really paying attention to the total volume of other medicines and things that you’re giving the patient.

Alex : Now, we should talk about depression and other psychiatric illnesses, but I think depression in particular because it’s so common and the desire to die is so common. Do you think referral to a psychiatrist is necessary? I mean, in my perspective, clinicians should be able to evaluate for depression and it’s not necessary. What do you think about that?

Tim : I think in the majority of cases where chronic psychiatric illness is not part of the puzzle and the patient doesn’t have anorexia nervosa, there are certain diseases that would be kind of red flags here that I think a good experienced palliative care person could provide the second opinion. I think a second opinion is very critical. I think an independent second opinion is a really good idea because the potential for countertransference in this things. But then I think if you get a patient whose had long standing depression or any history of anorexia nervosa or those kind of things, then I think getting a psychiatric opinion is a smart idea. Now, finding a psychiatrist who is willing to see such a patient, isn’t going to be frightened away by how sick these patients are, I think, can be difficult in some circumstance because you really need an experienced psychiatrist to help you out there. I do think that can be helpful.

We had a patient who, this was not a stopping eating and drinking, this was somebody who was feeding tube dependent who wanted to stop her feeding tube … long standing serious psychiatric illness. I said, “Look, we’ll allow you to stop your feeding tube but, before we do that, what we’d like you to do is to have a trial of what we think is a better anti-depressant than what you’re on. If you give us a month or six weeks of doing that and you still want this, we’ll support you 100 percent.” At the end of a month or six weeks, the patient’s feeling good and has no interest in this at all. So, I do think we have to be a little cautious about this particularly in areas of major psychiatric illness. If there is a question of that, getting a good psychiatrist involved is key.

Eric : Another practical question, I can imagine if you go through this process, let’s say, again, we go to one end of the spectrum. That person with mild dementia who decides to go through this process. You think they have capacity. They actually do it. What do you do when they die as far as the death certificate? Do you put end stage dementia or is that … In California, if we go ahead with physician assisted suicide, there’s explicitly … It says you don’t put in the word suicide in there. What do you do here?

Tim : Well, I’ll answer your question with a question first. It’s the old saw, you know. What do we put when a debilitated cancer patient stops being able to eat and drink and dies? What do they die of? Do they die of cancer or dehydration? Do we put dehydration? Well, sometimes we do. But, it’s really cancer they’re dying of. Again, I don’t think it’s problematic to put dehydration. I don’t think I would put voluntary stopping eating and drinking on the death certificate just because you don’t want the family to have to get into a huge thing with an inexperienced medical examiner. How do you tell the truth about these things? I suppose you could put dehydration they died of and then put whatever they’re major disease was that was motivating this as the main cause. The immediate cause of death might be dehydration, but the major cause would be their underlying cancer or their underlying whatever the disease was.

Alex : I want to ask, too, about when we should discuss this with patients. There are some who would say we should never discuss it with patients. There are some who would say if the patient brings it up, then we could present this as one among any last resort options after first, of course, exploring the reasons for that request. Then there are other who would say this has to be routinely offered to patients who have a limited prognosis.

Tim : I’m chuckling because I’ve … My answer to his makes … There’s nobody who’s happy with my answer to this except for me. The answer is, to me, offering this to every patient who is dying is nuts. First of all, there are going to be people who are terrified. “Why in the world are you telling me about this? What are you trying to tell me here?” To me, there are people for whom this is so far out of their realm of desire or radar screen or personal experience that it would be abhorrent to them and why put them through that when they’re already going through enough. To me, it’s nuts.

Having said that, when people are talking about, “what are my options?”, I think definitely this should be discussed with them because so few people really know about it as an option. It actually is an option for a wider range of patients than you often think, particularly those who are really tired of dying. So, I think those folks who are wondering what my options might be, they might prefer to have physician assisted death but it might not be available in their state or they might not qualify. I think this is an ace in the hole. Again, my own experience is that people knowing about this very infrequently activate it but they feel less trapped in the process.

Then you have the people looking and need something now and I think then you’re looking at all the options that are there. Even if you’re a person who couldn’t provide this, I think you could have some debate about whether you should tell people, “Some people allow this option.” Again, I’m not sure about that, but it seems kind of rough to have patients have to discover this for themselves because it’s a little counterintuitive.

Alex : In terms of specificity, when you’re saying patients are asking, “What are my options?”, it’s not “What are my options now that I have serious cancer.” It’s, “What are my options because I want to end my life early.” It’s specifically in response to a request to die.

Tim : That’s correct. “What are my options if I want to speed this process up if I’m really getting to the end of my rope here?” Again, a lot of people are interested in this hypothetically just in general. I think if they bring it up, then I think talking about their options is fine. There’s a smaller number who really are thinking, “I’m serious. I really need to know because I’m getting near.” I think they really need to know what they’re options are and which ones you can support. Then, an even smaller number who actually activate this at the very end.

Eric : When I’m thinking about this, from an ethical standpoint, I very much get … In your paper you do a great job talking about the legal parts, how we should be thinking about this from an ethics part. I’m thinking about those people with mild dementia. If we go even further down the spectrum, let’s say you have somebody who doesn’t have a life limiting illness who is having the same type of intractable suffering whether it be physical, existential, whatever it is, that motivates these people to pursue this. Is there a line where you say no, this person is no longer eligible for this because they don’t have a life limiting illness? I mean, life in itself is a life limiting illness, but when you think about this, how do you think about the ethics of that? Where do you draw the line if there’s a line to be drawn?

Tim : So, people draw different lines here. I feel most secure when I have an anchor of a serious physical illness as a big piece of the puzzle because that’s what I do. I deal with physical illness. I’m not a psychiatrist. Having said that, I know that a lot of people who want this have often very chronic physical illnesses. They have debility. It’s not a cancer. It’s not an overwhelming pain or overwhelming symptoms but there are physical aspects to it and they’re often extremely debilitated. For them, I think, again, it’s a mix of psychic suffering and spiritual suffering and physical, which it always is in everybody, but here a more even mix.

The more it’s a more pure psychic suffering or social suffering, then I just feel like, boy, I’m really out of my league here. In those circumstances, if somebody was talking to me in earnest about this, I would say, “Look, I’m not at all comfortable here. We’re going to have to get some psychiatrists involved to help us understand this. I don’t know that I can participate in this because, at the end of the day, I have to be able to wake up in the morning and live with it, too.” Also, I think without the anchor of some serious physical illness and serious physical components of the suffering, we’re in a different realm, maybe not a medical realm. Again, maybe there should be other people who are able to do that. I don’t know.

Now, again, people don’t need … One of the things that’s interesting about this, you don’t really need a doctor to do this. Right? There’s not a lot medical about it except for the assessment at the start and maybe palliating the symptoms toward the very end. Having said that, I think even if we decided the best way to do this is to have a secret society or maybe even not a secret society, you still want doctors to be involved in that assessment and to help in the process of palliating. There’s so many times when people just need to talk about this and they need to not feel trapped. Those are people we can really help and that’s what we do, right, most of the time in palliative care?

Alex : Absolutely. We should touch … My last question is about legal issues and your paper touches extensively on this issue. My sort of overall take is that this just hasn’t been tested legally but it’s not illegal as far as we know.

Tim : Correct. Correct. Yeah. It’s not illegal. It hasn’t been tested and it would be really hard to prosecute a doctor for doing this. So, again, because it’s really such a high percentage in a patient’s own hands, you’d really have to commit the patient to the hospital against their will in these circumstances. Now, if it was a pure psychiatric illness, I think you could make an argument for a trial of that, okay? I might be interested in doing that. I might do that in certain circumstances. But if a person has a serious underlying physical illness, that makes this understandable. It makes it very imaginable. I don’t think there’s a lot of legal jeopardy in this.

A vigorous prosecutor, some evangelist might go after you, but I don’t think the risk is really high.

Alex : My sense is that the courts would be reluctant to interfere in this sort of case because, as you say, so much of this is on the patient in making their own decision.

Eric : Are there other things that you would like to talk about, Tim, before we end with Alex signing a little bit more of the song?

Tim : I think this is something it takes a little while to wrap your mind around. I do think it does provide some options for people who don’t have good options. Again, as I imagine myself in those kinds of circumstances, it would be something that would give me solace if I had early dementia, that I could maybe have some choices about something like this. Again, whether I’d activate it or not, I don’t know. I do think it is an important option and it’s much more patient controlled than any of the other options, which I think makes it good in that regard.

Alex : Yeah. If I could just build on that, I’m deeply ambivalent about physician aid in dying but not nearly as ambivalent about voluntary stopping eating and drinking. I think part of that is exactly what you said. So much of this is on the patient. It’s the physician not forcing something on the patient like a tube so they can have nutrition or hydration. That sort of negative act is much more appealing than the positive act of writing a prescription to help somebody end their life.

Tim : Yeah. I agree with you. I do think, though, you really want that same careful evaluation that you would do because you were scared in the other zone with these patients. You don’t want it to be too hard but you don’t want it to be too easy. You really want to make sure that they’re really sure because this ends up at the same place.

Eric : Well, how about we end of a little bit more of the song, Alex?

Alex : Sure. Ends at the same place. Knocking on Heaven’s Door. Thank you so much for joining us, Tim. This was a terrific interview and we really appreciate you joining the GeriPal podcast.

Tim : It was my pleasure. [Singing]

Eric : We don’t get a lot of GnR time on this podcast, so love that. I just want to thank everybody for listening to the podcast. We’ll see you next week. Thanks everyone.