Podcast #120 Choices at the End of Life Part 2: Dementia Advance Directives and Voluntary Stopping of Eating and Drinking – Chaplain Hank Dunn

This podcast is jampacked with content, including a discussion of advance directives for dementia, Voluntary Stopping of Eating and Drinking, and a deep dive into decision making. In this week’s conversation, Chaplain Hank Dunn suggests a framework for thinking things through, including asking:

1) What’s the goal that you are trying to accomplish?

2) What would the patient want, and what does the patient think about their current and probable future condition?

3) What is in the best interest of the patient? and

4) What is the prognosis and probable consequences if a certain treatment plan is followed?

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Transcript:

Diane Hullet: Hi, I’m Diane Hullett, and you’re listening to the Best Life, Best Death podcast. This week, I’m continuing talking with Hank Dunn, chaplain, and we last week really hit upon all kinds of things. We were talking about decision making at the end of life. This powerful phrase of letting go and maybe letting go of that phrase and calling it letting be right Hank and No, just his book hard choices for loving people has so many little gems about the decision making around Interventions at the end of life and for people who are really seriously ill so welcome again Hank Glad to be here.

In our last episode, we kind of talked about how Hank got into this work, how he became a chaplain, and really he’s been working in the end of life field for over 40 years and brings so much to it. We talked about questions to consider when making these decisions. We talked about goals of care, decision making around all of this.

Let’s go into the decision about feeding tubes. That was something we touched on, but didn’t get into. 

Hank Dunn: Yeah feeding tubes and artificial hydration, nutrition, IVs for hydration. You know, when we love somebody and care for them, we feed them. I mean, that’s just babies. They need our care to feed them.

And old folks who can’t feed themselves, we You know, they, they sit there and this is one of the things I used to do as a nursing home chaplain I’d go especially down to the Alzheimer’s unit and I’d go there at lunchtime and say the nurse, I mean, I can help feed somebody and, and I said, I don’t want chokers or spitters, but so I’d sit down with a a patient and feed them.

And so. It’s so hard when a patient gets to the place where they can’t eat or swallow. And there’s a number of ways this happens. Sometimes it’s sudden, let’s say a stroke and a person who was basically healthy, normal and feeding themselves eating, they’re now. paralyzed on half their body and they can’t swallow and they’re evaluated in the hospital that this person cannot swallow.

And so they order a feeding tube and it’s inserted. It’s a pretty simple operation, actually. They just do it outpatient of putting a what they call a peg tube into the stomach and you can get food and fluid into that. That tube and feed the person sadly like the stroke patients, some of them actually regain the ability to swallow and nobody.

Re evaluates them and they keep this feeding tube. We had a patient like this at a nursing home one time. The family had said, you know, we’ll do, we’ll feed mom for a year. And if she’s, we know she wouldn’t want to be kept alive like this. So we’ll stop the feeding. But the way we handled it. Was we got the speech pathologist involved and she started to see if she could swallow and lo and behold she could swallow fine So it was it was never Re evaluated so that patient kept on eating by now.

This was patient was alert She didn’t speak but she looked around she would watch TV and things like that. And so Patient like stroke patients who get feeding tubes. They do need to be re evaluated because they might be able to learn to swallow there are other types of patients. Maybe it has throat cancer, can’t swallow, end up a feeding tube.

I had a patient like that in hospice one time and he had a feeding tube and he lived in his home by himself and he would nurses aide would get him out of bed, set him up in this kitchen, set cans of Ensure along the kitchen counter there and a couple of times a day he’d pop a can of Ensure and pour it down in his feeding tube.

And I asked him about that one time. What do you think about this feeding tube? He says, Oh, it’s great. I get to stay in my own home. I don’t have pots and pans to clean up. So so feeding tubes can benefit a lot of patients a lot of times, but where we kind of get problematic with them, if what if the patient Is non responsive and the kind of colloquial term for that patient in a vegetative state.

There were famous cases about this the Nancy Krizan case back in the 1980s. Actually, it was the settling of the Nancy Krizan case at the Supreme Court that I waited until that decision came down before I finished my first edition of Hard Choices. And basically the family had said, Nancy would not want to be kept alive like this.

She was in a vegetative state, non responsive to her environment. And the family said, let’s stop the feeding tube and just let her die. And they were in the state of Missouri and Missouri had in their law that have to have clear and convincing evidence that that’s what the patient would have wanted.

Well, they. They didn’t present that at court. And so the, the, the law went all the way to Supreme Court. And basically it said, yes, Missouri has the right to require clear and convincing evidence, but they went on to say, had she been in another state that did not require it, you could stop it. Or had she provided.

Clear and convincing evidence you could stop it. And the end of that case basically was the family found a friend who, Nancy, one time said, talking about a case about somebody in a vegetative state, said to him, I wouldn’t want to be kept alive like that. So I went back to court. The court said, yes, you can stop it.

The state that had no more interest in trying to stop this. So they stopped the feeding tube and let her die. This is this case. I think the, the vegetative state case, these are terminally ill people, if they do not have a feeding tube, they will die. And so all we’re doing is stopping a medical treatment and allowing a natural death to occur. And so helping families kind of see it that way can help them get to that.

Stroke patients, sometimes they might be more alert, and, and again, you probably really need to have clear and convincing evidence that they wouldn’t want to be kept alive like this. So the feeding tubes, it can be very difficult for families because it feels like I’m starving them to death. It feels like I’m killing them.

And to help them see this is just stopping a life prolonging medical procedure and you’re allowing a natural death to occur. Now the other cases that are difficult are advanced dementia patients. One of the. Characteristics of an advanced dementia patient is they cannot feed themselves and sometimes lose the ability to swallow.

I have swallowing difficulties and they are assessed and the pathologist says. This person can’t swallow. You need to put a feeding tube in. And there was a day when about 30 percent of advanced dementia patients ended up with feeding tubes. We’re getting way down now. It’s more like 10 or 15. And fortunately, it’s changing to where less and less.

The research on this is an advanced dementia patient like an advanced Alzheimer’s Patients, if they get a feeding tube, they live about the same amount of time as a patient who doesn’t get the feeding tube, but just gets careful hand feeding. You do not add one day to the life by putting in a feeding tube, but you make them much more miserable.

Because Just you lose that interaction of a nurse or a nurse’s aide sitting down three times a day to feed them. You know, or whatever pleasure they might get out of tasting food, they lose that. And so, it doesn’t help them and it’s the right thing to do to not put a feeding tube in and just keep them comfortable as much as you can.

Diane Hullet: I think of it again as being one of these medical interventions that is such an important development. It’s so, it’s so wonderful that we have it and it’s overused. And so for when it is necessary, wow, what a boon to help somebody get through a critical care period and then be able to regain the ability to swallow and be back, you know, doing well, hallelujah.

And. Really sometimes used in questionable ways. And I think, you know, Hank, this brings up this whole question of like, what’s a living will and how does dementia living wills tie into this? Because I think more and more people are saying, I don’t want that to happen. And if I have dementia and advanced dementia and lose the ability to swallow, I do not want a feeding tube.

How do I put that in writing? How do I make that known? 

Hank Dunn: Okay, let me I’m going to back up just a little bit to talk about voluntary stopping eating and drinking, because that’s, this introduces the topic of the dementia living will there since the beginning of time. People just choose at the end of their life sometimes to stop eating and drinking so they can die more quickly.

It is established that any patient, at any time that they have, you know, a terminal disease, they can just stop eating and drinking to hasten their death. And it is legal in every state in the United States, probably every country in the world, that a competent person can say, You know, I don’t, in our state, we don’t have medical aid in dying.

I can’t get a doctor to give me medications to ingest to hasten my death. Well, I’m going to do it by stopping eating and drinking and it’s called voluntary stopping eating and drinking shortened, shortened to VSED. There are some resources which I will give to you to put on the show notes.

There’s one, a special good one from V CED Resources Northwest, and it’s just, it’s, it’s pages and pages of help for if you’re choosing to stop and eat a drink at the end of life. Here’s some. Things to think about. It does need to be done under doctor’s care. Don’t just try to do it on your own.

Don’t tell your family or patient or doctor. Because there’s a lot of things they can do to alleviate. Uncomfortable symptoms of thirst and a dry mouth and that type of thing without drinking. 

Diane Hullet: I think you were saying, don’t not tell your doctor, right? I mean, you want to involve medical personnel in this to some degree and family members.

And you, I know of a situation in Colorado where. It was supported by hospice. Once the person began their terminal fast, they could call hospice and say, I’m, I’m dying and hospice gave them hospice care in every way that you would expect that to go. So it needs to be medically supported and your family needs to be on board to some degree.

They may not like it. It may be difficult, but you, you don’t just decide one day to stop and not even let your spouse know because that won’t be some death. in a comfortable 

Hank Dunn: way. Yeah. Yeah. And there’s actually lots of videos out there on YouTube and whatever of patients who are doing this and go through the process and you get to go step by step with them.

So there’s lots of help out there. So that’s, that, that’s one option for people who are not in states that have medically even the states have medically dying. Let’s say. You’re not actually terminal right now. For example, MS, some patients are not in the terminal phase, but they don’t want to go into the, to the stages to get to that terminal phase.

And they decide they want to stop eating and drinking. So back to where, Connie, how you introduced, what about the dementia patient who is your hand feeding? They open their mouth and they take food, but they do not know who they are. They did not know their family. They don’t talk. They are. totally bed bound, they’re incontinent, bowel and bladder, all this advanced disease situation.

And I’ve been involved with several cases way back in my nursing home days. So this is back in the 1990s, where families came to us, mother would just hate it if she could see herself, that she’s, you know, incontinent all over herself. She doesn’t know who she is. And We’re requesting it because it would be her request to stop the hand feeding and let her die in our opinion.

And we allowed this to happen. This was an advanced directive in the sense that they convinced us that this is what the patient would have wanted and we allowed it to go forward. And like I said, several, several of those way back back in the 1990s, I, my wife and I just made an addendum to our living wills.

We have the standard living will, but we added a dementia addendum for the case where we have advanced dementia and there is you can get. The, the, the, it’s called FAST, F A S T Functional Assessment Staging Tool. And you can Google that and find it. And basically it’s, it’s seven levels all the way to advanced dementia.

So when you’re in a stage, our, our living will says if I’m in stage six or seven, which is not recognizing family, down to just a few words Totally bedbound. I cannot feed myself, but I still open my mouth and take food. I want you to stop the hand feeding. Now, we did that. I’ve, I’ve talked to my children about this.

I gave them a copy of it so they know. What is in store if we get because they watch both my parents go through advanced dementia and we’re hand fed, tell about the last two weeks of each of their lives. So it’s a, it’s a way to do. V said.

I’m volunteering because I said ahead of time, in my living will, that I do not want this. One thing Thaddeus Pope, who I’ll put in your show notes too, he’s a lawyer and he has some great stuff. He really encourages to do a video. Of me saying, I don’t want this to and so it’s not only a piece of paper and so you’re, you can show it to the doctor to the caregivers or wherever it can be done under.

medical care, alleviate the symptoms, dry mouth, any other pain that you might be having, they can address those in other ways besides putting fluid into your mouth. That strikes me 

as 

Diane Hullet: really important, Hank, that a video message of somebody speaking, you know, at the early stages of dementia, but still able to articulate, like, I can see what’s coming and I do not want to do this.

That is so powerful compared to a box checked on an advanced directive. I think it’s an amazing kind of 

Hank Dunn: statement. Yeah, the thing about what happens sometimes, let’s say with, with dementia, you’ve, you get a diagnosis of Alzheimer’s, which we know how it progresses and it takes years and to do voluntary stopping and eating and drinking, you have to have the mind to remember, I don’t want to go through this.

So sadly. What some Alzheimer’s patients might do is early on, they’ll decide to do v sit. When they still have some enjoyment of life, they still enjoy seeing the grandkids. They’re not incontinent yet. They enjoy TV and, you know, all kinds of pleasures of life, and they enjoy the food. But they’re afraid their, their mind’s gonna slip to where they forget that they don’t want to live like this, which, which happens.

Yes, and so they might start v ced years before it really needs to be happening. So that putting it into a video or an advanced directive allows you to let, to be hand fed as long as there seems to be some enjoyment and again, not in the stage six or seven of of dementia. 

Diane Hullet: Well, I think this is a really important resource that you mentioned, the fast FAST and that that is this ability this six or seven stage.

Hank Dunn: Seven. 

Diane Hullet: Seven, yeah, seven stages. Seven stages that you can delineate what you like at each stage. Where, where do people find that? Just Googling it. Well, 

Hank Dunn: yeah, just goog and I did. It’s, it’s based on some research for, from some docs and they can, like I said, just go, if you do the whole thing, it’s functional assessment staging.

tool. There you go. 

Diane Hullet: And, 

Hank Dunn: and docs use this to, to say where they are. This patient is in the dementia process. There’s also, and I’ll give you the show notes, some sample. Dimension living wills that you can get and my wife and I actually chose the one from end of life choices, New York, there are different.

Some of them seems really confusing. So there’s just more and more resources on all that. 

Diane Hullet: Well, I think there’s something about making it simple enough for us to understand the complexity of the issues, simple enough for us to state what it is we want and, and clear enough to explain to our beloveds, right?

So that everybody’s on the same page and that this isn’t happening in crisis or a surprise to people. I think there’s really something about that. I think Hank, we’re going to see more and more of the importance of these living wills for dementia. And the understanding of the possibility of voluntary stopping of eating and drinking or be said as the boomers age, right?

Because on this, these huge numbers of elderly people and people with dementia that are going to really rock our medical system and, and be really a huge factor. And I want control. And it’s interesting how these give back some degree of control or, 

Hank Dunn: Yeah, one of the things I just thought of in relation to this, I was given a lecture one time down in North Carolina and I shared actually a 10 minute video of a woman who was, did V SAID.

And I had them write out questions, a question, one of the questions, What’s the difference between this and suicide? Good question. And some, and I’m sure some will see this as Suicide. You’re allowing somebody to commit suicide by letting this go on when, when basically this is the only treatment that’s keeping you alive.

And that is eating. You’re withdrawing a treatment that could could be considered a medical treatment, especially with dementia patients who are being hand fed by. Either family or even medical personnel, you’re withdrawing the treatment. So it’s a withdrawal of a medical treatment to allow a natural death to occur.

And again, especially with dementia patients to do it clearly in an advanced directive to, to, we’re just doing what dad wants. This is what he would want and, and he was made very clear about it. 

Diane Hullet: It strikes me that we can think of it kind of on a continuum, right? And at one end of the continuum, it is like vegetative state, can’t do anything, doesn’t know anyone, really brain dead and being fed with a stomach tube, a feeding tube.

And at the other end is maybe. Early dementia and showing signs of inability to swallow or like you said, a stroke patient and inability to swallow. And then there’s just all this space in between. So I think what we’re really talking about is how do people take a hard look at that and make some.

Statement about their personal choice for autonomy at the end of life, what they would like to see happen. And I do think this whole question of, is it suicide is kind of a thorny one for people. And I think the differences that we’re typically talking about someone who is dying, they are in the end stage.

And so it is hastening death in a nonviolent way, which Feels quite different to me than suicide and, you know, suicide is such a complex topic and so many people are touched by it. But there’s, there is this difference in sort of intent and experience of both the person going through it and the loved ones who are left behind.

Hank Dunn: Yeah, yeah, it, and, and family members I actually talked to a nurse who. Cared for a woman who did visa. She’s very competent, elderly person and chose to stop eating and drinking. And she said the lady had three daughters and two of them didn’t agree with it. What I’m did and the other two, of course, it’s their mom’s decision.

But they weren’t in favor of it, but they, of course, were in favor of her being. Kept comfortable through the whole process. So, yeah, it’s again, if we can be clear in our advanced directive and our how we talk to our families about this, that it can help them and of course help. Medical facilities too.

You might need I keep paying for nursing home insurance. I tell my wife, I’m probably the only man in the country who wants to go to a nursing home to cash in on that insurance I’ve been paying so much for, but a question I would want. To know before I went to a nursing home, will you allow this dementia advance directive to be honored?

So, 

Diane Hullet: and I think that’s going to be a really interesting question because one administration of that nursing home might say yes, and you go into it, but then something changes their bought the staff changes. So it’s a question you probably have to ask more than once, right? Continually asking that. Hank, in our first podcast episode, we talked about these five questions to help with decision making.

And I think those are worth reiterating here again at the end, because, because what we’re, what this all boils down to is information conversation with your loved ones and decision making. I mean, that’s that’s what this is about, right? And it’s, it’s decision making about a hard topic that a lot of people don’t necessarily want to go towards, which is death and end of life and being disabled and fragile.

Hank Dunn: Yeah, so the 5 questions I came up with by the way the 1st edition of the book, I had 3 questions and then I thought I had 4 questions. So eventually I, I, I got to 5. And, and so here, here they are. Basically, the 1st 1 is what’s the goal? What is the agreed upon goal of medical care for the patient at this phase of life?

And the term phase of life is important there because, you know, I might put something in a living will now, but I don’t know what all is going to be thrown at me. At a later phase of life and so especially like if someone says, yeah, I want you to do everything to, to save my life. Well, I might say that now is, you know, as a healthy person walking around, still ride my bike and all that kind of thing, but.

After a couple of years in a nursing home it’s totally different. So this phase of life, what, what do they want? You know, they would say, Oh, mom chose to, to do fight cancer. She’s a fighter. We’re going to do everything to keep her alive. Well, she fought cancer when, you know, she was 60 years old. She’s now 85 with dementia.

So so that’s the first one medical goals. And I narrowed it down to three, one to cure something that comes, you get it, you know,

Second possible goal is stabilization of functioning and a feeding tube can stabilize you at this level for a long period of time. And the third possible goal is to prepare for a comfortable, dignified death. And so that is the three possible goals. Second question, though, is What does the patient think about their current and probable future condition?

So it’s so important to to know what do they think about their condition now, because If they don’t like what they are now, let’s say they’re a nursing home resident, they hate being in the nursing home as good as it might be. They’d rather not be there. And you’re talking about CPR that almost surely will not save their life.

But if it does, they’re going to be worse than they are now. And so possible future condition if you do a particular treatment. So those, that’s important part of that question. Third question is what’s in the best interest of the patient? This is very subjective. I cannot tell someone you shouldn’t get CPR because it only has a 2 percent chance.

Well, they might like 2 percent chances. So so that’s best interest of figuring of best interest is. Fourth question is. What are the prognosis and probable consequences if a certain treatment plan is followed? This is so important to talk to doctors and nurses about. All right, if we do this, let’s say for example somebody has a stroke, they’re in the hospital, they’ve had a stroke, and they need permission to put a feeding tube in.

All right, what chances are they going to have to recover from this and get To be eating again. Now that’s a hard question for a doc to answer, by the way. It maybe takes six months for them to know that, but it’s an important question to ask. And let’s say somebody. That had a brain injury and in a vegetative state the doc can say they’re not going to get any better by putting this feeding tube in.

So that’s an important question. Then the final question is, can I let go? And just let things be. And that’s the emotional and spiritual part of the end of life of, I mean, I, I, I just never forget. This is early on when I was talking to all these nursing home patients and their families, and we had a patient who had been rushed out to the hospital.

I’d already talked to the daughter about a do not resuscitate order and she didn’t. Do anything about it. And I, I called her. She, the guy came back to the, from the hospital still was a full code to do everything to try to keep him alive. And I called the daughter and I went through the whole conversation again.

She says, you know, I know, I know when his heart starts, there’s nothing that’s going to start it again, but it’s just so hard letting go. And for her, CPR was a symbol of holding on to her dad, which CPR was not going to accomplish that. And to her credit, she called the doc and requested that do not resuscitate order.

And he died peacefully just a few days later, actually. So I’m afraid we asked. families to make these decisions and they feel like they’re making a life and death decision and this one is a death and death decision. They’re going to die no matter what we do. So let’s do it more peacefully. So that’s where I say it comes down to the emotional and spiritual things.

Cannot let go. Well, 

Diane Hullet: Hank, I think your book, you know, one of the things I love about your book, hard choices for loving people. And the subtitle is CPR feeding tubes, palliative care, comfort measures, and the patient with a serious illness. Part of what I love about it is this is not a tome. You know, this is a slim meant to be read quickly.

It’s. You know, 80 pages, 76 pages of narrative, and it’s meant to be useful, a useful guide and a practical guide, but it doesn’t ignore the spiritual emotional because that’s such a component of end of life. And then you’ve got another beautiful book called light in the shadows meditations while living with a serious illness.

What, what can you tell us about that Yeah, well, 

Hank Dunn: It came out there in my while I was working at hospice and I just started working with these patients and families and they were just seven, they were just so, it was so hard. And then, and I remember often in hospice team meetings, I would say, you know, dying is hard enough.

These people are making it so much harder than it needs to be. And so I just started thinking about things that I’ve seen and read about. That are, are the emotional and spiritual issues. And that’s basically what’s in this book. I did a first edition and I think 99 and a second edition 2005, something like that.

And cause I added some more stuff. So they’re short. There are, I mean, you can, you can read one in three minutes or five minutes and they’re just on different topics and letting go, letting be making medical decisions forgiveness what’s going to happen to me after I die? Things like that.

So I wrote it really thinking about. These patients and families are having really such a hard time letting go. What, what more can I do as chaplain to help them do that? So it’s different because it doesn’t, I don’t. deal with any of the medical treatment decisions. And it’s pretty much an expansion of the last portion of the hard choices book, which is all about the emotional, spiritual issues.

Let me give you a real quick story on how that this book and the end of hard choices staying with the emotional, spiritual issues. I had a, a doc call me one time. And he wanted, they, they wanted to get permission and pay me. They were going to pay me for just. Reproducing the chapter on CPR. And I says, well, get back to your team.

Tell me exactly how, how you want to do it and how you want to use it. So a couple of weeks later, he got back to me and he says, talk to my team. He says, you can’t separate. CPR from the emotional spiritual issues that are in the back of the book will continue to buy the book as it is. And so it’s a package you, you, you cannot make these decisions without considering the emotional and spiritual impact of these decisions.

And that’s why I had it all together and kept it all together now, 30, 40, 35 years since hard choices came out and it stayed together. 

Diane Hullet: Well, I, I love that Hank, because it makes so much sense. I mean, we are physical, emotional, relational, spiritual beings, right? So somehow why, why we think, why we’ve gotten the displaced notion that we could somehow separate the physical out and just talk about that when we’re talking about something as powerful and It was great.

Big and giant is death, you know, an end of life. It just, yeah, you have to keep it all together. It’s one package because we’re one package, right? 

Hank Dunn: Indeed. 

Diane Hullet: Well, I appreciate this conversation so much, Hank. I’ve been talking with Hank Dunn and you can find out about all of the work he does at hankdunn. com and you can find his two books on Amazon.

And as always, you can find out about the work I do at Best Life. Best death.com. Thanks again to my guest, Hank Dunn. 

Hank Dunn: Thanks for having me.

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.