How to Make Hard Choices at the End of Life with Chaplain Hank Dunn

My guest in this episode is Chaplain Hank Dunn. Hank is an ordained healthcare chaplain, bestselling author, and speaker who, for more than 30 years, has been helping patients and their families as they struggle with end-of-life decisions. In this episode emphasizes the importance of understanding these treatments as they may not always align with what's best at the end of life. 

His experience as a nursing home chaplain led to his involvement in ethical committees, especially after Virginia passed a Natural Death Act, granting patients the right to refuse treatment and have advanced directives.

He began educating families about treatment options, which led to the creation of a booklet. Despite initial reluctance from the ethics committee, research on CPR outcomes prompted the production of "Hard Choices for Loving People," addressing the complexities of end-of-life decisions.

He emphasizes that end-of-life decisions are not solely medical but also emotional and spiritual, requiring individuals to let go and accept the inevitability of death. He stresses the importance of palliative care, which focuses on comfort and symptom alleviation at any stage of illness.

Feeding tubes, hospitalization, and transitioning to hospice are major decisions discussed in his book. He addresses misconceptions about hospice, illustrating its role in prioritizing comfort over futile treatments. Orders such as "do not hospitalize" offer patients and families more control and thoughtful consideration in their care decisions.

www.hankdunn.com

https://www.amazon.com/Hard-Choices-Loving-People-Palliative

https://www.amazon.com/Light-Shadows-Meditations-Life-Threatening-Illness

Transcript

[00:00:00] Hank: The nurse had tears coming down her cheek. That nurse just witnessed a daughter letting go of her mother. What the daughter was hearing is I'm gonna lose my mom and they're not gonna be able to bring her back. And that's okay. This was a high. Welcome 

[00:00:18] Jill: back to seeing death clearly. I'm your host, Jill McClennen, a death doula and end of life coach.

[00:00:24] Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a Space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

[00:00:44] In this episode, I talk with Chaplain Hank Dunn, author of Hard Choices for Loving People. If you listened to the last two episodes of the podcast, you will know that Hank's book and this podcast interview you're about to hear are a big part of how I was able to better understand what was happening during my experience with my aunt, and I'm so grateful to Hank for writing it and talking with me on the show.

[00:01:09] We discuss end of life decisions and the emotional complexities behind treatment options. Our conversation gets into the differences between TV portrayals and the real life effectiveness of CPR. intubation and other life extending measures. Thank you for joining us for this conversation. Welcome to the podcast, Hank.

[00:01:28] Thank you so much for coming on. I have been following you now on social media for a while. So I know a little bit about you and I of course know of your books. I actually have both of them here and hard choices for loving people. Months ago, I was at a group in New Jersey that I'm part of called TREC.

[00:01:48] It's like the Tri Regional Ethics Committee, and they did a whole presentation actually using your book on the different treatment options that people get offered at the end of life. And how a lot of us. I don't actually understand the realities of these treatments, and we of course just trust the doctors, as we should, but we trust the doctors to recommend what is best.

[00:02:10] And sometimes at the end of life, some of these things are not always what's best. And that's what I love about your book is not only do you explain all of them, but you But then a little further on, you kind of give your own opinion. So you kind of stick with the facts. And then you're like, but also my observation, this is my opinion on them.

[00:02:29] So I love your book. I'm going to put a link in the show notes. Thank you. But I'm really excited to talk to you today. 

[00:02:34] Hank: Well, thanks for having me. It's interesting. When I wrote the first draft, it was back in 1989 or something like that. I probably put too much of my opinion in on this section, which you just described, describing all the different treatments.

[00:02:50] And I sent a draft out to a couple of people. One was a psychotherapist. I had been in a therapy group with her for years. Another one was a physician, friend of mine. Well, the physician. Said it, Hank, you're being so manipulative. You want people to do what you're saying, but you're kind of hiding it by how you bend all the stories and stuff.

[00:03:12] And so the psychotherapist said, Hank, I can't tell where you are on this. And so it was from their different perspectives that the idea came to me. Well, let me just separate them. I'll, I'll present. The treatment and the treatment options, CPR, feeding tubes, all this kind of the best I can in an even handed way.

[00:03:34] But I will give my opinion about these things in the back of the book. So, what you noticed was essential to how this book got birthed. And I have heard a lot of comments about that, that I don't tell people what to do. So, it's worked. 

[00:03:49] Jill: Well, that's one of the things that a lot of times when people ask me about being a death doula, I'm like, look, I'm not here to tell people what they should or should not do at the end of life, but I want them to make informed decisions.

[00:04:02] And we can't make informed decisions if we don't have accurate information and me not coming from. Healthcare at all. Right? Like I was food service for many, many, many years. So I have the service part down. And actually, I think it was in your book, I learned that hospice and hospitality have the same route.

[00:04:22] Yeah. Which I thought was kind of cool. 'cause I was like, oh, look at that. So I guess I've been doing it . 

[00:04:27] Hank: Same industry, hospitality industry. Yeah. Yeah. I think if I remember historically. Hospice grew out of the idea of a place you stayed, like an inn or something like that, when you're on a journey somewhere else, about back in the Middle Ages or whatever.

[00:04:42] So, in a sense, hospice is a place you're involved. Now, of course, most hospices are in people's homes. Hospice work is in the people's homes, not in a place. But anyway, the idea of hospice is being a step along the journey. In this life to the end of the life, 

[00:05:00] Jill: and it definitely is. I mean, it's part of our journey.

[00:05:03] If we exist now, we will die at some point. It's just part of the journey. We don't really have a choice. But what we do have a choice in is how that journey will look for us, right? Some of the treatments that we go through. And again, me coming from outside of this, I didn't understand CPR. I didn't understand feeding tubes.

[00:05:25] I didn't understand a lot of these treatment options that can extend somebody's life for a really long time when they would have naturally died without them. And it doesn't mean that those things are bad or wrong. But there is a time when it might not be what the person wants and we can't make those decisions if we don't understand.

[00:05:49] And so again, I do, I love your book because it's small enough that you can just sit and you could read through it and get the information, not be overwhelmed by the information and really just get an understanding of what all these different things are. And so actually let's backtrack slightly anyway.

[00:06:05] You are a hospice chaplain. That's correct. 

[00:06:09] Hank: That's what I have been doing. I'm not actively involved, but that's been most of my career. I started as a nursing home chaplain and then became a hospice chaplain. So that's my area of, of involvement. 

[00:06:21] Jill: And what drew you to doing this type of work? Like when you were a kid, I assume you probably weren't like, I want to be.

[00:06:28] Hank: I want to be around dying people. Well, interestingly, uh, now that you mentioned a kid, I never made this connection. My grandfather was an undertaker. And my grandparents lived in the funeral home. And of course, when I was a little kid, we'd go over, see grandma and grandpa, and we'd play hide and seek around the caskets in the room where they showed them.

[00:06:50] So my mother was a nurse, grandmother was a nurse and a couple of aunts were nurses. So anyway, no, what happened to me, I. Grew up in Florida, went to University of Florida, then went to seminary in Kentucky, served at church in Georgia for five years. I was a youth minister. And then we just kind of up and moved to the D.

[00:07:10] C. area in the Virginia suburbs. And I was doing inner city work ministry and the organization I was working with, we were losing our funding. So I was, going to be out of work, and I needed a job. My wife was a school teacher. We had two small kids, and so I had the opportunity to become a halftime chaplain at a nursing home.

[00:07:35] And, well, I needed the work. Sounded okay. I interviewed. did the tour. I had never had any training as a chaplain. Did some visiting nursing homes and hospitals when I was a youth minister, but so I said, yeah, okay, let's try it. So I took the job and that was in August of 1983 and turns out I really loved it.

[00:08:01] I love the old people, love their families, love, love, love the staff, the nurses. And after six months, I was liking it so much, I asked the nursing home, could we make it a full time position? I'd like to do this full time. And they said yes. And so, in early of 84, I became a full time nursing home chaplain.

[00:08:24] Well, about that time, Virginia had passed a Natural Death Act, which put in code that in Virginia, you had a right to refuse treatment, a right to an advanced directive, here's a model of living will that you can use. And so the owners of the nursing home, we started a Ethical Committee directly in response to this Virginia Natural Death Act.

[00:08:46] And so, The medical director, lawyer, myself, nurse, director of nursing, etc. We all sat on this ethics committee and we said, all right, Virginians have this right to refuse treatment, right to advance directive. What are we going to do about it? Well, let's just tell everybody about this. All of the patients who are competent, all their families, let's tell them about this.

[00:09:07] And Hank, we want you to do that. And it was partly, I think, because now I've had full time hours and what's that going to do with all this time? So, I started out by doing, I looked at every chart in the nursing home, about 200 beds there. And only about 15 of the patients had any sort of advanced directive, a living will, or do not resuscitate order, or something like that.

[00:09:32] So we had our work cut out for us. And so I just started talking to patients and families. And I'm saying the same things over and over again. You know, CPR research shows doesn't work for nursing home residents. And you can call the doc and talk about this. And so after doing this, now that's, that started in the belt.

[00:09:51] 85 or so, we started real seriously doing the ethics. I suggested to the ethics committee, well, let's write a little booklet because I'm saying the same thing over and over and over again to these families and they have to talk to their state and let's write a booklet with the ethics committees to the person said, no, do not put it in writing.

[00:10:10] You're doing a good job. We like what you're doing, but don't put it in writing. So I kind of kept on. Keeping my mouth shut about it. Well, then this research came out of a study out of a VA hospital in Houston that they looked at the use of CPR on all the patients there at the Houston VA hospital and out of the, about an average of 15 percent survived to be discharged from the hospital who got CPR, but nobody over age 70 survived.

[00:10:41] Well, I thought, We gotta tell people about this. So I wrote a draft of a booklet to give to patients and families. I shared it with the ethics committee. This is the same ethics committee. And they said, Oh, that's, this is great. Let's do this. So that was the birth of Heart Choices. That was the birth of my getting into this was just basically jumping in the deep end and talking to patients and families about this.

[00:11:06] And. So that's how it got started, how I got started in health care, and how actually the book, Hard Choices for Loving People, got started. 

[00:11:16] Jill: And I used to be a lifeguard when I was in high school, so I had trained in CPR. And I remember learning how to do it, and you're using the dummy, and you know, like, they they bounce, right?

[00:11:28] Like when you're practicing on a dummy. And I remember the first time somebody said to me, by the way, when you do that, you're probably going to break some ribs. And I was like, excuse me, what? And they were like, yeah, just be prepared that if you have to do this on somebody, you're going to break their ribs.

[00:11:42] And I was like, Oh, that's. Interesting. I don't think most people realize, because again, if you've ever taken training and you're using a dummy and you've never done it on somebody, which knock on wood, thankfully I never did have to, and I have not yet, and I don't really want to. I could if I had to, I did get retrained, but it's not this thing that we see on TV.

[00:12:05] Like a lot of these medical treatments, right? When you see somebody intubated on TV, if you see CPR, if you see all these things like again, somebody gets CPR, Oh, and then they're fine. They sit up, they're talking like life just goes on. And that's not the reality of it. And so you take somebody that is elderly, that probably already has some health problems along the way.

[00:12:28] And you give them this treatment that is very aggressive, again, it's gonna break some of their ribs, especially if they're frail. They're not going to bounce back from it. They're not gonna have this normal quality of life after going through it. But because people don't know that, When you talk to really anybody that I've even talked to as a death doula, most of the time they're like, well, yeah, of course I want CPR.

[00:12:53] And I'm like, but do you understand CPR? If you understood it, you might not want it. And again, if once you understand it, if you say, sure, I still want it fine. But the fact that people over the age of 70 typically won't even survive it. And if they do survive, it's not going to be pleasant. I understand though, that that's hard for people.

[00:13:16] To think about my mother's in her 70s the thought of if something were to happen her to just be like, well, CPR is not going to help. Of course, I understand that that's not something that we're going to easily say, I wouldn't have her go through it. But also, I want us to all just be educated to the realities of it.

[00:13:33] But it is a lot to think about. Yeah, I want to do everything. 

[00:13:36] Hank: Well, again, we're so influenced by what we see on TV, and it's so successful on TV. There's been actually a lot of research into that, about the success rate on TV versus real life. And some of these shows have 100 percent success rate with CPR.

[00:13:53] Nowadays, CPR in the hospital, only about 17 percent of the patients survive to be discharged. There's several classes of patients. The terminally ill patient, the patient with multiple Medical problems don't survive and anybody who can, who could not live independently before this cardiac arrest, like nursing home, assisted living, or even living at home, but you can't live independently.

[00:14:19] These people don't do not survive. And I found, I still find, once you share that information with people, well, no, we're not going to do that, it's not going to work anyway, and it makes sense to people. I think, kind of the basic thesis of my book and books is that these decisions are primarily emotional, spiritual.

[00:14:39] And so, if it's presented to them, do you want us to resuscitate your mother, which is a horrible way of presenting it, as if, Anytime we do CPR, they're resuscitated. That is not true. Only 15 percent of the time are people actually resuscitated. So the question should be, do you want us to attempt resuscitation attempts on your mother?

[00:15:02] So, attempting resuscitation is a better way of putting it. But the people feel like they're making a life and death decision. And I like to say it's a death and death decision. These patients are going to die whether you do CPR or not on these seriously ill patients. And so what we come down to is this, can you let go?

[00:15:23] That's, that's really, and just kind of let things be. And it applies to hospitalization of frail elderly folks. It applies to feeding tubes and things like that. It really does kind of get it to be an emotional thing. Decision. I was speaking one time at American Geriatric Society, local meeting in Northern Virginia, and a doc came up to me after.

[00:15:46] She's a great physician. She took care of a lot of patients at our nursing home. And she told me this story. She says, Hey, I was talking to another nursing home. I was talking to this daughter of one of the nursing home residents, and I was explaining to her about CPR. It just doesn't work for patients like you.

[00:16:03] Your mom, and I'm going to recommend we do a do not resuscitate order. And there's this nurse was standing there listening to this conversation between the doctor and the daughter and the daughter said, okay, yeah, I put that order in the do not resuscitate order. And the daughter walked away and the doc told me, she just turned to the nurse and the nurse had tears coming down her cheek and the doc thought, Isn't that funny?

[00:16:28] She was in tears from this conversation. I said, Joanne, that nurse just witnessed a daughter letting go of her mother. This was a high, holy moment. And we want docs to do what this doctor did, but this doc was in tears. was talking as a scientist and she was talking as a physician, a great physician. What the daughter was hearing is I'm going to lose my mom and they're not going to be able to bring her back and that's okay.

[00:16:58] But the nurse saw what was going on. So all these decisions, they have this emotional and spiritual element to it. It's crouched in medical decisions, but it's for these people making these decisions. It's letting go and letting be at the end of life. 

[00:17:15] Jill: Yeah, I think that's actually one of the first things I underlined in your book, because you could say I got all my legs.

[00:17:21] You had said another reason I know that decisions are mostly based on emotional and spiritual struggle. Letting go is because I've seen so many family members change from an aggressive treatment plan to withdrawal of curative treatment. They finally come to the point of being able to let go and just let things be.

[00:17:39] And I know, again, as a daughter, right, as a granddaughter, as a mother, that it would be very hard for me in a lot of cases. to say, you know what, okay, it's fine for us to stop treatment. Cause I know you do talk a little bit in here about even children. So it's not like, you know, that this book is just for like elderly patients, but unfortunately there are parents that do have to navigate the end of life of a very sick child and need to make these decisions.

[00:18:12] And how, I can't imagine how difficult that would be because there is this letting go that we have to do. It's not giving up though. There's a difference in saying I'm just going to give up and it's fine, whatever happens. It's more of letting go of our attachment to what we want, what we wish was happening because you already pointed it out.

[00:18:33] You know, in our conversation, but I think, again, you mentioned it a few times in your book that the people are dying. It's not like we're saying, you know, don't resuscitate them. They're a healthy 45 year old. It's more, they're dying anyway. They're dying from an illness. So, giving some of these treatments, yes, it will extend their life, but it's not going to give them life, which is a big difference.

[00:18:56] But as humans, we're so attached. We're so attached to our people, right? And that's a good thing. That's what keeps us alive. If we weren't attached to our children, when they were carrying on, we might leave them in a bush and walk away, but we don't do that. We get very attached to our people that we love, but there does come a point when we have to realize that it's our attachment.

[00:19:18] It's not that they're going to live, you know, happy and healthy. We're just not letting go yet. And I think some of that, I mean, and you probably could speak on this even better than I could. Some of that is the regrets and the shame and the things that we wish we could go back and do different. When we know that somebody is dying, then we think, Oh, I wish we could have had these conversations.

[00:19:41] I wish I would have taken the time to do these things when we can't do them. Now it's unfortunately at that point, it really is too late. to do that. The only thing we could do is work with coming to a place of peace and acceptance within us, and also saying to the person, I love you so much. I'm so glad that you were in my life.

[00:20:04] Hank: Yeah, you've touched on a lot of very good points. What is the, the, The grief that is surrounding these decisions, and especially as you think about having to make these decisions for children. This parent who is having to decide to withhold or withdraw life prolonging treatment for a kid. Not only is it just somebody they love, but The possibility that they're going to graduate from high school.

[00:20:28] The possibility they're going to get married. The possibility you're going to have grandchildren. All this grief is tied up in that. But even if it's an older folk, a parent or grandparent, that grief of saying goodbye to them is Involved in these decisions, so it does in many ways get the emotional side of it is just huge, and I think you touched on it, but realizing that the patient I emphasize in my book, the subtitles is for patients with a serious illness, so this is very sick.

[00:21:00] People were talking about. And as a matter of fact, you probably don't have a conversation with a doc about doing CPR or not for somebody who's basically like a healthy 30 year old. So, because the patients are very sick, seriously ill, probably terminal, that these treatments offer very little. So now we can really try to emphasize the comfort of the patient rather than prolonging their life.

[00:21:26] Jill: Yeah. I know that was one of the things that I learned about when I became a death stool is this idea of comfort care. That's really the big thing with hospice is I would say almost even the biggest misunderstanding of hospice is that everybody thinks, Oh, well, hospice is when somebody's really at the end of their life.

[00:21:45] Well, not always, it could just be that they decided that they're not going to continue these treatments, but they want to stay comfortable. So there's still care that's provided to keep people comfortable. Because most of the time when I talk to people, and I'll say, what is your biggest fear around death?

[00:22:03] It's not death itself, right? It's not the moment of death. Some people, it's, I don't know what comes afterwards. And like, I get that. There's nobody that can tell us for sure what comes afterwards, because nobody knows for sure. But most of the time, there's the fear of the suffering before death. There's the fear of their family having to experience them suffering before death.

[00:22:26] And I'm like, well, there is things that can be done to lessen that, right? We can't completely eliminate it, but we can offer different treatments that will help you to be more comfortable so that it's not as really traumatic. I think that's the thing too, when I talk to people and they'll say, Oh, you know, my mother's death was so traumatic, it was so terrible.

[00:22:48] Okay, well, what was so terrible about it? And then they'll talk about all the different side effects of all these different treatments, and the CPR, and the feeding tubes, and the intubation, and having to decide to stop these things. And that's the trauma that comes with death. Death itself is not traumatic most of the time.

[00:23:04] In some cases, yes, if it's a violent death or an accident, but most of the time, the death itself is not traumatic. the traumatic part. It's the things that lead up to death, which is unfortunate. 

[00:23:14] Hank: There's, I don't know if I put this in the book, but the Woody Allen had a quip. He says, I'm not afraid of dying.

[00:23:20] I just don't want to be there when it happens. So it's the process of getting there that most disturbs us, whether it's pain or being incontinent or somebody having to clean us up and things like that. That's, you're exactly right. So there's a cliche that I actually. Put in the subtitle of one of my chapters there, cure sometimes comfort always.

[00:23:43] And it's just something we keep in mind all through the course of any disease. Sometimes we can cure stuff. Thank God sometimes, but not always, but we can always care for people. I'm going to put up a quote, social media, probably this week of Amazon review of my book. And the woman was very complimentary of it.

[00:24:03] And she said something like it encourages you to stop care. And I said, I'll take one issue with what she said, we never stop caring. You hear docs and nurses talk, we're going to withdraw care. No, we're withdrawing the ventilator. We're withdrawing the feeding tube. We're not withdrawing care. We will always care for people.

[00:24:25] It's something to assure too. And that's sometimes I think what people are afraid of. Withdrawing treatment, or with going into hospice. Well, they're not going to care anymore. Well, that is not true. And I like to think hospice is some of the best care you can get where we concentrate on the patient, not the disease.

[00:24:44] Concentrate on alleviating all uncomfortable symptoms, rather than trying to cure everything that comes along. 

[00:24:51] Jill: Yeah. In my experience, personally, at least, The best care that my grandmother got through a four year quote unquote battle with cancer was when she was on hospice because it really was more about the care for her as a person and what would help to keep her comfortable and pain free and clean and all these things that I didn't know how to do.

[00:25:17] Where up until hospice got involved, it was just surgeries and radiation and aggressive treatments and doing all of these things that were trying to attack this cancer, but it really wasn't even about her. Especially now that I'm removed from this situation and I have a different perspective to look at it In some ways, it really wasn't about her at all.

[00:25:39] It was just about another battle with another cancer that these doctors were fighting and. Hospice came in and then suddenly it was about her and it was about me as her main caregiver and what we were experiencing and how we could keep her comfortable. So like really, hospice is the most caring in my experience.

[00:26:02] Hank: Yeah, yeah, good, good observation. In defense of docs, their toolkit. Is limited in the sense it like if you had a repairman come to your house to fix your washing machine, and all he brought was a hammer and a screwdriver. Well, you best believe that fixing that washing machine is going to involve a hammer and a screwdriver.

[00:26:23] And so if a doctor. All they know of is chemotherapy, radiation, surgery. That's what they're going to offer. But if they're thinking, too, I have this toolkit for comfort care only, as one of the options I can give to this patient and family, then that would give you more choices, so to speak, if you know that comfort care only, hospice, palliative care are other options that you can offer to the patient.

[00:26:52] Jill: I've never even heard of palliative care until a couple of years ago. The first time somebody said it to me, I was like, wait, what? Yeah, 

[00:26:59] Hank: yeah, yeah. And the palliative care folks want me to say clearly, it's not hospice like. Palliative care is its own discipline of alleviating any uncomfortable symptoms at any stage of disease, whether you're This final stage, which would be hospice or earlier on a patient just starting to get chemotherapy, let's say for a cancer, a palliative care doc can also help.

[00:27:27] All right. How can we make you comfortable while you're going through this treatment? So palliative care is you don't have to stop curative care to get palliative care. You do have to stop curative care to get under hospice for the Medicare hospice benefit, which is most people in this country are Under medicare for hospice.

[00:27:47] Jill: Yeah, I actually volunteer with two different hospitals now in New Jersey with the palliative care team and it's been interesting to me to be an outside observer in some ways coming in from totally no medical background. Just even how often doctors are not recommending palliative care within the hospitals.

[00:28:07] They're waiting almost until it's like a little too late, even where the palliative care team's like, Oh, I wish we could have, you know, Seen this person weeks ago, months ago, even in some cases, again, years ago when they started these treatments, because then we could have just gotten to a place where we could understand what is important to them, what matters to them, how to help them the best, it's, Really something that I hope more doctors use more people ask about if you get a cancer diagnosis, ask about palliative care, find out information.

[00:28:40] And I know at least here where I live in New Jersey, there's not a lot of palliative care outside of within the hospitals. There's a couple of places that do hospice and also offer palliative care, which is, I think some of the confusion that people have is that they think it's like you said, the hospice light word.

[00:28:59] They're connected, but really they are very different because you can use palliative care and go through your treatments and end up at the end of your treatment and they'll say you're in remission, you're cured, whatever it is, and then you move on. It's not like using palliative care means that you're dying and that you have to use them until you die.

[00:29:20] Hank: Yeah. Yeah. Yeah. It's a great. thing in the end. It is hard to get people to understand the difference, but palliative care is a different, it's very similar and there's usually a team and that you probably saw in the hospital there was the palliative care doc and the palliative care nurse and palliative care social worker, palliative care chaplain, a good palliative care programs has all the different elements just like you got in hospice.

[00:29:46] It can be a great addition to getting curative care. 

[00:29:51] Jill: Yeah, I love the people that I've been working with. I've learned so much from them, not just about like medical stuff, but I've learned a lot of different medical things that I didn't know. Yeah. But just also, I've learned so much about how to talk to people and how to really get clear with them.

[00:30:11] Without it being like, so what do you want when you're dying? Like, let's, let's kind of approach the conversation a little different. Yeah. But I love it. And we are getting close to the end of our time. So, is there any like last things that you really want to talk about? Anything that we missed talking about?

[00:30:29] Hank: Well, yeah, that's the one thing that we really don't have time to totally get into it, but feeding tubes are a big issue with a lot of people because it's just, it's what we do. We feed people, but toward the end of life, a lot of times they're eating difficulties. Dementia patients are notorious for not eating well at the end and sometimes feeding tubes are used with them.

[00:30:52] It does not help them at all. There's a lot of emotional stuff wrapped up with feeding. When we love someone, care for them, we feed them. And it's very similar to withholding a ventilator, in the sense of withholding an artificial feeding tube. It doesn't help them and could even prolong the dying process and make it much more painful.

[00:31:13] Feeding tubes can be helpful. A lot of times, like a stroke patient, can have a feeding tube for a short period of time and then learn to eat. On their own, but people can get stuck with a feeding tube for years and not be responsive at all to their environment. So feeding tubes, that's one of the four big decisions I talk about.

[00:31:33] CPR feeding tubes, whether go hospitalized or not, and then making that switch over to hospice. Those are the four big issues people have to deal with. 

[00:31:42] Jill: Yeah, because the feeding tubes. Again, like, I don't know, in my head, I thought it was more like an IV, right, that it just like went in that way, but that is not the case.

[00:31:51] I know the one that they put in the stomach, a lot of times there can be infections that come with that. There's a lot of issues that can come along with it. And yeah, you can put somebody on a feeding tube and keep them alive a really long time. But that doesn't mean there's quality of life. There was one man that I actually worked with and he had been on a feeding tube for about a year when I sat and I talked with him and he was in a nursing home.

[00:32:19] The biggest thing, and I think you talked about it in your book, was the loss of social connection when he started using a feeding tube. Because now he wasn't going to the dining room, he wasn't seeing his friends. He had to sit in his room and have the nurse come in and do this whole thing. But it was a really big loss for him when already he had lost so much.

[00:32:42] And so He was kind of like, I don't know if I want to do this anymore. Like, yeah, I'm alive, but I'm not living. I have nothing that really gives me any joy now because I used to love going for breakfast and lunch and dinner and sitting with my friends. And I can't do that now. And I never thought of that.

[00:33:00] I was like, Oh, that's really sad. I'm sorry to hear that. 

[00:33:03] Hank: Oh, that's too bad. Yeah. Yeah. One of the things I mentioned about these stroke patients who can get a feeding tube. sometimes temporarily. Stroke patient can recover over time and can learn to swallow again. But what happens that they have a stroke, they go to the hospital, they're evaluated, they can't swallow, so they get a feeding tube.

[00:33:23] They're sent to the nursing home and they're never re evaluated. And I found one piece of research where they attempted to hand feed this nursing home that had like 32 fed patients. They attempted to hand feed all of them and they were able to get half of them off the feeding tube. But they just were never re evaluated again.

[00:33:43] Even if they have to be hand fed, you have a nurse's aide or a nurse sitting there with you to feed you. Or a family member. Or a chaplain. I used to do that and I'd go down to our dementia unit where we'd I'd feed, I'd help feed patients at lunchtime. And it's another way of relating to people. There's a very social, spiritual aspect to eating and sitting at a table with other folks.

[00:34:07] Even if it's a table in a, in a nursing home, it's still that social connection we have to food. 

[00:34:13] Jill: Yeah. Cause when I think back on, I don't know, really most of my fondest memories of life There's food involved and not just because it's my career from before this, but just I think back to family dinners I think back to parties.

[00:34:28] I think back to these opportunities to connect with people that I love and food is Often the center of that and so when we lose that it can be a huge loss in our life and This idea that yes, when we are caring for people, part of caring for people is feeding them and I know as somebody gets into the active dying phase, that is one of the things that even if they were able to eat up until then, they're not going to be eating as much and people want to feed their loved ones because they feel like that's Yeah.

[00:35:04] going to help them, but really the body does not want food at that point. The body is shutting down. It's not eating for a reason, but that is a hard one to let go of is this. Yeah. This food thing. 

[00:35:17] Hank: It is hard. Yeah. 

[00:35:19] Jill: And one of the things too, that you mentioned about the choice with hospitals, right? Cause again, If we're caring for somebody in our home or even in a nursing home, but I'm thinking again, caring for somebody in the home, that if something happens, we automatically, we want to call 911.

[00:35:36] We want an ambulance to come to take them to the hospital. But I know that I've heard. That oftentimes, if they go to the hospital, they're potentially not coming out, right? That that's going to be where they're going to spend the end of their time. But a lot of people, when you talk to them, that's not where they want to die.

[00:35:54] They don't want to die in a hospital. They don't want their last couple of days or even weeks or in some cases, months. They don't want to be in a hospital hooked up to a bunch of machines. They'd rather be home where they're more comfortable, at least. 

[00:36:07] Hank: You summarize it very well. Uh, hospitals are, they're.

[00:36:10] Hopefully to cure people and, uh, make them better. And so that's why we go to the hospital, but for people who are in their last stages of a terminal disease, they're not going to get cured. Maybe it's time to just say, no, we're not going back to the hospital again. I remember when the Jimmy Carter went on a hospice, which has been like eight months now, bless his heart.

[00:36:33] But the statement that they put out. Is that he was just tired of going back to the hospital again and again, and he didn't want to do that anymore. And so, they brought in home hospice. So, that's where a lot of people get to is this, I don't want to do this anymore, just let me. be comfortable at home. And Jimmy Carter is a great example.

[00:36:54] You can be on the hospice for more than six months. You think you have to six months only, but if you're still qualify as a hospice patient, then you can be on a longer period of time. So the hospitalization you can get in a nursing home where they call a do not hospitalize order. So that patient Would not go to the hospital without a conversation with the attending physician, the family, the competent patient.

[00:37:20] There might be a reason you need to go to the hospital that you didn't think of. And so the do not hospitalize order at least puts the brake on it, the spike of temperature on a Saturday night. And the doctors covering and they're not going to come in and look at you as well, just send them the emergency room.

[00:37:38] But if you have that do not hospitalize order that says, well, stop, let's think about this and let's talk to the families, talk to the doc and decide whether this is really what we want to do. So, yeah, do not hospitalize order can be a very. Helpful thing to, especially nursing homes, assisted living patients or even people in their own home.

[00:37:58] You can get a, an out of hospital do not resuscitate order for people in their own home. Let's say somebody falls and their home and the call, the rescue squad can. The rescue squad can lift the person up, get 'em back in bed, but not transport 'em to the hospital. 

[00:38:13] Jill: I don't think most people know that you can get those forms for your home use.

[00:38:18] Or even in a nursing home and talking about forms, there's like the do not resuscitate and there's people that are trying to use allow natural death rather than do not resuscitate because the language that we use really does make a difference. 

[00:38:32] Hank: Does. 

[00:38:32] Jill: And right, saying allowing natural death. feels more like, oh, well, of course, if it's time, I want to allow them to die.

[00:38:41] Where do not resuscitate seems like, well, that means we're not going to try to keep them alive, which it's basically the same thing. But again, the language behind it just makes it feel, I don't know, just feels better to say allow natural death, but not everybody. uses that language. And I guess the forms themselves are still called DNR forms most of the time.

[00:39:03] They're not a lot 

[00:39:04] Hank: of places. Yeah, some of them have changed to what you said, all natural death. Some of them do DNA or do not attempt resuscitation. So I kind of in summary, and we're probably going something you may have said earlier, maybe think of this and I can conclude with it. These decisions people struggle with a lot of times.

[00:39:24] And I like to say you can never make a wrong decision. You just do the best you can with the information you have at the time. Because a lot of people might look back and say, We should have never sent mom to the hospital. We should never have put that feeding tube in. Well, you did the best you could at the time.

[00:39:41] It seemed like the right thing to do. I've never run into a family that intentionally did something that they knew was going to harm the patient and would not be the right thing. They were just trying to, They did the best they could. And so I like to say that usually down the road, somebody say, we should have never done this.

[00:39:58] We should have never done that. Well, you didn't know that at the time. So do the best you can with the information you have. And that's all we can ask of anybody. 

[00:40:07] Jill: It's true. And that's why there's people like you that wrote books to help educate. So even if this isn't something that you think you're going to need to decide about for a loved one anytime soon, read the book, learn about it and find out what some of these decisions might be.

[00:40:23] Because most of us, when we have to make the decision, it's potentially under stress. It's under this immense feeling already of sadness and grief and all these things that are coming up and then all of a sudden you have doctors asking you do you want to do these things that you don't even understand.

[00:40:39] So, there's also people that you could reach out to. That's what Death Duel has helped to do. Even in hospitals, there's usually social workers, there's palliative care social workers, there's, you know, There's hospice social workers, if they have a hospice team, there's people there that can help you understand.

[00:40:55] But we also sometimes need to ask, is there anybody that can come in and maybe have a discussion with me before I make this decision? Very 

[00:41:03] Hank: good. 

[00:41:03] Jill: Awesome. Well, thank you so much. I will put in the show notes, a link to your website, your books, anything else you want to direct people towards. 

[00:41:13] Hank: No, no, just HankDunn.

[00:41:15] com is the website and then my blog is on there. You can click on the blog, also links to Facebook, Instagram, things like that. So yeah, I welcome people to get in touch. 

[00:41:27] Jill: Wonderful. Well, thank you again, Hank, for coming on. It really was a pleasure and I love your books. So I was very excited to be able to talk to you today.

[00:41:35] I get like a little giddy when I'm like, Ooh, I really appreciate their work. Actually wants to sit and talk to me. So thank you so much. 

[00:41:43] Hank: Thanks. 

[00:41:44] Jill: Thank you for listening to this episode of seeing death clearly. And next week's episode, I talk with Amy Flanagan about her beginnings in theater to her role at the uniformed services university, and don't worry.

[00:41:58] If you don't know what that is. I didn't know either. Amy's career trajectory offers insights into the intersection of acting and medical training, where she started off playing patients and ended up coaching doctors and delivering sensitive news with compassion and empathy. She shares with us her personal experiences, including the loss of her sister, and we talk about the importance of effective communication and navigating difficult situations.

[00:42:26] Join us next week to hear about her journey and the roles she currently has in helping to create more compassionate healthcare practices. If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated.

[00:42:42] Please consider subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show. Your contribution will help keep the podcast advertisement free.

[00:42:58] Whether your donation is large or small, every amount is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes. To subscribe to the paid monthly subscription, as well as a link to my Venmo, if you prefer to make a one time contribution, thank you.

[00:43:16] And I look forward to seeing you in next week's episode of seeing death clearly.