Podcast #119 Choices at the End of Life Part 1: Crisis Decision Making –  Chaplain Hank Dunn

When difficult choices arise around healthcare and the nearing end of life, Hank Dunn has some ideas to help us decide what to do. In his book, Hard Choices for Loving People, he suggests that families consider asking themselves and each other: What are we trying to accomplish? What’s the goal? Are we trying to cure? Are we looking to stabilize functioning? Or are we preparing for a comfortable and dignified death? This podcast is full-full-full of thoughtful content that is important for all of us to consider. 

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Transcript

Diane Hullet: Hi, you’re listening to the best life, best death podcast, and I’m Diane Hullett, your host. And today I’m here for a two part series with Chaplain Hank Dunn. Welcome Hank. 

Hank Dunn: Glad to be here. Thanks for having 

Diane Hullet: me. Yeah, I think this is going to be really a great conversation. Hank and I kind of connected over social media.

We’re both kind of a, okay, I’m going to call us oldsters who jumped on social media. What do you think? 

Hank Dunn: That’s correct. 

Diane Hullet: Fair enough. So, uh, we’re the white haired people on social media. And I think we both have found that to be a really powerful way to reach more people. With kind of conversations and information and support around these huge end of life issues.

Uh, so Hank’s going to tell us about himself and we’re going to kind of dive into he’s, he’s written a really powerful book called hard choices for loving people. And we’ll talk about that because, uh, there’s so much packed in that little slim volume that I think is really valuable for people. So, so welcome Hank and go ahead and just kind of tell us, you know, how did you get into being a chaplain?

Hank Dunn: Well, it’s a little bit of a circuitous story. I went to seminary and graduated in 1973. I served five years as a youth minister in a Baptist church in Macon, Georgia. And then we just up and left Macon, went to DC area, no jobs or anything, but just were called to be a part of, uh, we wanted to be a part of a church up there called Church to the Savior.

Was a carpenter for a year and then I was did an inner city work for four years and our our organization lost its funding and I was out of a job and uh, the pastor of our church was contacted by an owner of a nursing home in Fairfax, Virginia. Said we need a chaplain, you know everybody needs a job and they said, oh yeah, Hank Dunn.

So I, I took the job. It was a family owned for profit nursing home, but they always had a chaplain and it was a halftime job. I loved it so much. I asked him to be full time and that was in, let’s see, that was in 84. So I was there for like 12 years and that’s where I learned all about. End of life care and, um, uh, it, uh, I learned so much from the nurses, few of the physicians, but the nurses, director of nursing, they were just super and, uh, shepherding me and teaching me plus, uh, reading a lot of stuff.

So, and interestingly, when I got there. Virginia just passed a natural death act, and which gave Virginians the right to, uh, uh, an advanced directive in the law, in the law, you always have that right, but they put it in the law, and the right to refuse treatment, and our nursing home was very progressive, we had a lawyer on the staff, and they basically, uh, we formed an ethics committee, and they said, what are we going to do about this?

Natural death act for our residents at the nursing home. And they said, well, let’s tell everybody about it and, um, uh, about right to refuse treatment, right to advanced directive and Hank, we want you to do that, so I do very little about it, but I just jumped in with both feet and first did a survey of the 200 beds there and looking at all the charts.

And we only had like, I think it was like 15. Of the 200 patients had any sort of advanced directives. no CPR order, anything like that. And by the time we really jumped into it, I like two years later, we had like 85 percent of our patients had this, uh, advanced director. So that’s where I learned, uh, was just on the job training, talking to families, talking to patients.

And, um, uh, uh, like I said, I learned so much from the nurses and reading, of course, reading the medical literature and others who were doing this type of stuff. Yeah, 

Diane Hullet: incredible. So, I mean, really 40 years of experience and then kind of consolidated a lot of what you learned into this book. Tell us about how Hard Choices for Loving People get written and was that your first book?

Hank Dunn: Uh, it was, yeah. It’s, um, and the first edition was 1990. I actually proposed doing this book like in 1986 to our Ethics Committee after I was talking to everybody. I said, you know. We just need to hand them something and also, you know, I have. Brothers and sisters in Michigan and Colorado. And we need to let them send them a book about it.

And, uh, I’d like to do a little booklet. Well, the ethics committee unanimously said, no way they said, yeah, we like what you’re doing, but don’t put it in writing. So a couple of years, two more years went on in the, um, port came out in the medical journal about, uh. Patients over age 70 who got CPR in a veteran’s hospital down in Texas, and those over age 70, none of them survived.

And I said, oh, we got to get this information out. So I wrote a draft of the book, and then circulated the draft among the ethics committee, and they said, This is great. Let’s do it. So it was the classic, it’s easier to get forgiveness than permission. So we published it in 1990 and as an afterthought, we sent it out to other nursing homes in Virginia.

And we out of 200. 100 books we sent out, we sold about 4, 000 books as well. We got something here. So we started marketing it. I started my own publishing company in 1990, 93. And, um, it’s self published and it’s now sold more than 4 million copies and, and in sixth edition now. Wow. 

Diane Hullet: And so you, you’ve continued to update the information.

I did. 

Hank Dunn: Yeah, I 

Diane Hullet: did. It makes so much sense just to kind of read a few things. You know, the contents include CPR, cardiopulmonary resuscitation, feeding tubes, artificial nutrition and hydration care. Sometimes comfort always. Treatments to consider practical help for decision making, and this is what we’re going to jump into today and the journey to letting be the emotional piece.

I think it’s so interesting, Hank, because when you talk about those numbers of people in that first 200 bed facility, and only about 15 of them had paperwork in order. I bet those numbers are not that different today. I mean, maybe 50 percent of people I talked to have their paperwork completed. And what I think is so fascinating is I think people sort of think of it as like, oh, they know, you know, the person is going to be caring for me.

They know what I want. But I think what people forget is the burden of decision making that goes on those family members or loved ones. Who are having to make these very difficult decisions about interventions when someone’s really critically ill or elderly. So I, I think it’s so powerful that you decided to, to kind of write it down.

And first the ethics committee was like, let’s not write that down. And then a few years later, they were like, yeah, this is. This is really important information to get out. So in the book, you talk really directly about patients with serious illnesses and the uses of these interventions. And I want to say right up front, you and I are doing a double podcast episode.

So Hank and I are going to talk specifically about a couple of these now, and then we’ll get into the ones that we don’t talk about today in the next episode. 

Hank Dunn: Sounds good. So, um, yeah, so I, there was a article, this was years ago, and it’s kind of been an outline for me. The four big decisions that people are usually faced with CPR, feeding tubes.

Hospice or palliative care and hospitalization. There’s other ones, but these are the most common ones that people face. And so that’s how I kind of centered my book around these four, although I have three, I have a chapter each on three of those, and then just, uh, a couple of pages on hospitalization. So, um, CPR, um, kind of just go ahead and get into that.

Is that good? Yeah. Yeah. Yeah. Yeah. Okay. So. CPR, um, cardiopulmonary resuscitation was developed in the 1950s and 60s, and many of us have had, and I hope we all have had, training in how to do CPR because it does save lives. And originally, uh, I looked up the original. Medical journal article that recommended CPR, and they says, it’s not indicated in situations where death is not unexpected.

So in other words, you’ve got a, uh, a failing, uh, elderly person in the ICU, who you’re really expecting the CPR was never meant for them yet. It gets done on these folks all the time. So we have to, um, medical journal article. Just kind of know what the, the statistics are and bottom line, like for nursing home residents, the survival rates, like one to 2%.

And those folks who survive are in worse shape than they were before. So when I share that with folks, Um, most say, Oh, well, let’s don’t do it. It’s it. And these statistics are very helpful to people. I’m afraid sometimes physicians will talk to a family says we can do CPR. And it’s, it’s possible that we can save their life or we can choose not to do it and just keep them comfortable.

And it’s your decision. And so the family feels like they’re making a life and death decision. And I like to say. It’s not a life and death decision. It’s a death and death decision. This patient is going to die whether you do CPR or not. And I just wish physician would say to him, uh, for this type of patient, I recommend that we not do CPR.

We’ll keep them comfortable, control their pain. Clear their airway, whatever’s necessary. So, in many ways, CPR, it, it, like all these decisions, and of course this is my bent as a chaplain, it really comes down to kind of a spiritual decision. Can I let go? And, and I’ve had families tell me this. I, I know I should do the no CPR order, but it’s just so hard letting go.

And, Again, if we can share with them, it’s not going to save their life. The no CPR order, DNR, whatever you want to call it is really the right thing for a lot of these folks. And, um, I would like to take the burden off families. They just feel like they’re making a life and death decision and it is not.

So that’s the first one. Um, uh, I think, uh, the next podcast we’ll talk about feeding tubes and, and that type of stuff. But the next decision that people often have to make is what about a hospitalization of a nursing home resident, for example, or assisted living, or somebody living in their home with You know, home care and family taking care of them.

What you have to realize, hospitalization, especially in the ICU, is considered aggressive medical care. And sometimes, it’s just best to keep the patient comfortable where they are. Fortunately, nowadays, in nursing homes and even some assisted living places, you can get, like, IV medication in the nursing home.

When I was Way back in the 1980s, you couldn’t. If they needed IVs, they had to go to the hospital. Fortunately, that’s not the case today. Uh, IVs, you can get them in your own home. So, you can do things to keep patients comfortable where they are. And what you have to actually look back to, and I didn’t start with this, but I usually do when my book starts with this, is what’s the goal?

What are we trying to accomplish? Is it trying to cure the patient? Are we just trying to stabilize their functioning? Or, are we now wanting to prepare for a comfortable and dignified death? And that for patients with a serious illness, this is an illness that most people who have this die from it and it’s a great burden on the patient and the family.

So a serious illness, uh, the goal quite often changes to preparing for a comfortable and dignified death. So when you consider whether to put somebody in the hospital or not, what’s the goal? What are we trying to accomplish now? Sometimes people want to get to the hospital and they feel more comfortable in the hospital.

They don’t feel comfortable in the nursing home, even dying in a nursing home. And of course that’s their right and their privilege. But a lot of folks are just saying, and I hear more about this, uh, president Jimmy Carter’s, a matter of fact, when he went into hospice care, he had, they, the, what the press release said, he had just had several hospitalizations.

And he decided he didn’t want to do that anymore, so they got hospice care at home. So, it was too many hospitalizations, and a lot of people go through this. So, best if you can think ahead of time, no, we don’t want to go to the hospital, and just keep them comfortable at home, or in the nursing home, or assisted living, wherever the patient might, might be.

And again, fortunately, there’s a lot we can do to keep people comfortable at home. Because a 

Diane Hullet: lot of people aren’t afraid of pain, of course, we’re afraid of pain at the end of life. So we think we’ve got to go have that pain fixed. And that means going to the hospital. But I think it’s so important for families to realize how much pain management and comfort care can be given in these home settings, as you’re saying.

And, and so you’re right, Hank, like the very first kind of fork in the road is hospitalization or not hospitalization. And then that fork. Begins to lead to some other decisions. 

Hank Dunn: Yeah. And they, the next would, would they, well, what, what if I say, I don’t want to go to the hospital, what do I do? Well, like Jimmy Carter, he went under hospice care at home.

You can get palliative care. A lot of palliative care programs are at home and the difference between hospice and palliative care, very similar. Goals are quite the same. Palliative care, though, you can get it at any time in the course of an illness. Uh, palliative care just basically means controlling pain and symptoms for a patient.

I had a, uh, talked to a guy one time who had just been diagnosed with cancer, and his first visit to the oncologist to prepare to, uh, plan out his treatment. Um, He, he met with the oncologist and then they had a palliative care doc on their staff and he met with them too. So I’m going to try to cure this disease, but I’m also going to get.

Pain medication and care. I think it’s 

Diane Hullet: important to add like with a specialist in pain medication. I mean, cause not that the oncologist can’t prescribe a thing or two and, and, you know, support pain management in that way. But I think the palliative care specialists specialize in mitigating pain. And I think that’s so important because I think they have more tools in their toolbox and they’re more nuanced probably in the medication and supports they’ve, they come up with.

Hank Dunn: Right. Yeah. So, um, so there’s palliative care and then there’s hospice care and hospice, uh, is, of course, the, the federal mandate started like 1983, something like that. The hospice benefits started with Medicare. Generally, the definition of going into hospice care is life expectancy of six months or less and not pursuing any more curative care.

So if you want to keep trying to cure your cancer. But you need help with pain medication stuff. Palliative care is where you want to go. If you’re saying, you know, I’m not going to fight this anymore. I just want to go home. I want to be with my family. I want to be comfortable and live to my maximum for each day I have left.

So that’s hospice care. All hospices will have, of course, a physician, a nurse, nurses aide to come in the home a couple times a week, a chaplain. Social worker. Um, volunteers to help out. Um, it is not round the clock care in the home and until maybe the very end. And some families are really surprised when they find out.

You mean I have to change mom and and clean her up? Yes, you do. Unless you want to pay for Home, you know, 24 hour care. You can do that, but hospice won’t pay for it. They do hospice does do what they call continuous care and it is really reserved for the last. Two or three days of a person’s life when the management of the patient gets so great and the relief is needed by the family.

So, um, and many hospices have inpatient units, so they’ll take a patient to the inpatient unit for the last couple of days of life or week or so, something like that, but hospice. Uh, I went from being a nursing home chaplain to a hospice chaplain, and it’s great work. Uh, I just was surprised. I love my nursing homework, and I was just surprised at how much I loved hospice work, um, because you’re working, you’re going to people’s homes.

And this is their territory. I’m there as their guest. And as chaplains, um, uh, interesting thing happened. A quick story on when I was a hospice chaplain at this, uh, Northern Virginia, I was working, um, four days a week and, um, my caseload was just getting where I couldn’t see people on a regular basis. And I went to my manager and she said, well, I’ll see if we can find us.

You know, some more help. Well, we merged with another hospice. Well, they had, they had chaplains. They had to find places for, and my manager says, I’ll take one. So we got two chaplains in this region. What happened was prior to me having that extra help. The admitting nurse would say to a family or patient, would you like to see the chaplain?

And only about a third said yes. And there’s all kinds of reasons why people say no is, you know, well, I’ve got my own pastor. I don’t need one. I’m not a Christian. I’m not, I’m not religious. I don’t need one. Uh, if I say yes, that means my pastor is not doing a good job. So no, I don’t want one. Well, we changed the question to a statement.

The chaplain will be calling you in a few days to set up a time for a visit. And I would call and we were getting into like three quarters of the family, of the homes. Once we changed that from, would you like to see the chaplain, to the chaplain will call. And I like to think, then I got into homes, so many homes with non religious people, or atheists, or, or, um, um, Jewish folks, or, you know, Muslims, whatever.

They said, okay, yeah, come on. So. The chaplain and the spiritual issues, uh, at the end of life, of course, is something I’ve concentrated on. And this is a big part of the hospice team too, is addressing those spiritual and emotional issues, which, of course, social works do a lot. And I’d work closely with the social work sometimes.

Uh, a patient or family didn’t want to see the social work. So I’m in the home doing social work, basically. And sometimes I didn’t want to see the chaplain. So the social workers in there doing chaplain work, but we got it done. It’s 

Diane Hullet: interesting how the words kind of people have associations with them, right?

And that really echoes my experience. I’ve, I’ve told this before that my mother in law, she was very open minded and not, not super religious in a traditional sense, but had grown up with religion. And she said, yep, I want to see the chaplain. And what the hospice chaplain offered us was So much more than we could have imagined.

As you said, it was really a spiritual discussion without having to be a religious in a particular way. And she really valued that. So I think, you know, this, we’ve got both the practical level and the decision making level and then the spiritual level that comes up as as a really, um. so poignant and strong for people as they’re approaching the end of life.

And gosh, we could go either way because I want to talk more about both of those. Tell us more first about kind of what spiritual questions do you see people wrestle with? 

Hank Dunn: Yeah, I’ve thought about this as I’ve done around the country doing lectures. I have part of my presentation is on the emotional spiritual issues.

Some of the More religious type questions. What’s going to happen to me after I die? A lot of people, um, you know, look forward to going to heaven folks that don’t believe in that they’ve dealt with that. I think, like I say, they have dealt with this and they’re okay. You know, this life is all there is and I’ve lived it to the fullest and they’re okay with that.

And, uh, as a chaplain, uh, if Uh, I think good chaplains are not there to push my religion on anybody, but help them with their own spirituality. So settling that question, what’s going to happen to me? Um, I, I love this question. I got it from him. He says, would say to patients, if you were to die today, God forbid, but if you were to die today, is there anything that would be left undone?

And a lot of times they’ll say, God, I need to reconcile to my brother or my sister or children or whatever. And so that reconciliation work, uh, asking for forgiveness, giving forgiveness, that, that type of thing. Uh, one of the big issues that I, I consider emotional, spiritual issue is, um, letting go of control.

Which is so hard and so many people, especially as they fought less than they were fighting cancer for years, perhaps, and now it’s going to take their life and to be able to let go of controlling that disease and, um, getting the point and, uh, I switched my terminology a lot over the years from letting go to letting be, and it’s a little more gentle way of letting go.

So it feels like you’re losing something. Letting be is just, this is the way it is. And that’s. Kind of one of the spiritual issues, too, of just being able to accept everybody dies. This is my time. It’s okay. I don’t like it. I’d rather not die, but it’s okay. And most people I’ve found get to that point that, uh, they’re okay with that.

And, um, uh, again, Would rather not die, but yep, that’s how it happens 

Diane Hullet: is this letting go and letting be, I think, ties back into decision making. Right. And so let’s go back to that for, you know, family members who are having to make decisions. Well, there’s there’s first the person who needs to fill out their advanced directive and make decisions, right?

But then come to these crisis points and we come to these, um, you know, decision making junctures. How do you support people and help them think through the difficulty of do we do a feeding tube or do we do CPR or what do we do in terms of a ventilator for mom, dad, 

Hank Dunn: grandma? Well, um, as you said, it’s one question I would always ask, but what would your mom think about her situation?

And as a matter of fact, I’ll just a good point to talk about these questions that I have. I have five questions to help people make those decisions. And, um, the first one is, but what, what’s the goal, um, that you’re trying to accomplish? And I already talked about that. Um, Cure stabilization of functioning or preparing for a comfortable, dignified death.

So if you get to the point, well, our goal is to Just keep them comfortable. Then the second question that I had in my book, which I actually changed in the midst of this sixth edition, and, uh, we went back and, uh, since, since we, we, we print about every three months, so I’m able to change. things. And I found this article.

My second question used to be, what is, what would the patient want? And, um, I found this article on the medical journal, the stock wrote, and she said, you can’t get what you want. And that’s true. Sometimes, you know, if, if a patient said to me, look, what I want is to be cured of cancer and walk out of this hospital bed and go back to playing golf.

Well, you can’t get what you want. So I actually wrote this doc who wrote that article and she helped me with a second question. And it is, what does the patient think about their current and probable future condition? So, you, you know, What you’ve got now, are you happy with it? And, uh, a hospice doc, when my mother fell and broke her pelvis in an assisted living in Colorado, actually, uh, we met with, my sister and I met with him, um, he, she had been in a hospice care.

His first question was, what did your mom think about her dementia? He didn’t ask about the broken pelvis. What did your mom think about her dementia? And we said, she hated it. She threatened suicide a couple of times. She did not like when she would say, I don’t like what’s happening to me. And he said. He said, Okay, here’s what we’re gonna do.

We’re gonna get rid of all these medications. We’ll keep this one. We, we know we’re going to keep her comfortable right here in the assisted living. We didn’t even send her to the hospital for our x ray. So what does the patient think about their their current condition? And that can help a family kind of think through.

Mom hated the way she was. She did not want to live like this. Okay, then that’s, that’ll help us. Third question is what is in the best interest of the patient? And this is very subjective because some people might say it’s in their best interest to keep them alive no matter how poor the condition is.

Others might say, look, uh, the best interest is to let them die peacefully. Fourth question is what are the prognosis and probable consequences if a certain treatment plan is followed? And this of course is a question for a physician to, um, to answer. Help help and, and nurses, uh, medical. team as chaplain.

I couldn’t give advice, medical advice like that, but I could coach him. So ask the doc this. And so, um, that, that’s what, uh, social workers, uh, chaplains who are not actually medical people can, can add or bring a nurse into the conversation. I often would do that, especially at the nursing home where I would talk, be patients about this is have a nurse there with me and she could tell them about, you know, Treatments and what they do last question of the five questions is can I let go and just let things be?

And that’s the more emotional spiritual questions for family Can I get to that point of just letting things be? That’s such 

Diane Hullet: a beautiful way to phrase it and I think it’s so interesting how that is both applicable to the person who’s the patient the That one with the illness, and it’s also so applicable to family members, and I think family members wrestle with that in different ways, right?

Someone person might be ready. Often it’s the person who’s been most closely involved with caregiving. That person might be ready to let go and let be. And the sibling who just flew in from out of state and isn’t quite up to speed. Wrench in matters, right? Yeah. 

Hank Dunn: I found an article years ago about the daughter in California.

It was titled the daughter in California syndrome because people on the East coast all the time talking about the daughter from California, she flies in and says, Oh, don’t let mom die. I love her so much. Well, where have you been for the last three years that I’ve been caring for mom at home and cleaning up her poop and pee.

You come in and now just say, we got to do everything to keep her alive. So, uh, I have this, one of my, uh, I have theorems I give in my lectures and one of my theorems is the emotional and geographical distance between the patient and the family makes it harder for them to let go the closer you are. The ease, not that it’s easy, but the easier, for example, uh, spouses tend to have an easier time saying no more, just keep them comfortable than children do or cousin does.

So, um, uh, that, uh, emotional. And geographical closeness is it’s a real thing that there is research on that 

Diane Hullet: too. It’s a very real thing. I’m so glad we kind of came to that because I think that’s a really real thing. And that is about wrestling with your own complexity and your relationship complexity.

Ideally, before this critical juncture of decision making, right, that we’re kind of at the at this, do we do big interventions? Do we keep this person alive medically? Or do we let go and let be? Yeah. Yeah, that’s huge. Well, I think that’s actually maybe a perfect nugget for us to end on, Hank, with our part one.

And I look forward to talking more in our next podcast. We’re going to just keep going here with number two, which will go up next week. I’ll add here, you can find out more about Hank, how. 

Hank Dunn: Yeah, the easiest place is my website, which is hankdunn. com and there’s links to my social media there. I have some YouTube videos you can link on there.

I’ll give you some to put in the show notes too. But that’s the easiest place to start. My book you can get on Amazon if you’re just buying one. But if you, if you’re getting more than 10, definitely get one. Go to my website and order it for my publisher. They give discounts starting at 10, so that’s a good place to go.

Diane Hullet: Fantastic. Fantastic. Well thanks so much Hank, and as always, you can find out about the work I do at Best Life. Best death.com. Thanks for listening.