End-of-Life Nutrition & Hydration with Hospice Chaplain Hank Dunn

In this episode, I welcome back Hospice Chaplain Hank Dunn.  We dive into a crucial yet often misunderstood topic—artificial hydration, nutrition, and voluntary stopping of eating and drinking (VSED) at the end of life. We explore how feeding tubes work, when they are beneficial, and when they may prolong suffering. Hank shares stories of patients who regained the ability to eat, those who lived independently with feeding tubes, and others in vegetative states where continued artificial nutrition raised ethical concerns. He also touches on the history of feeding tubes, advancements in medicine, and how pop culture—like Grey’s Anatomy—portrays these issues.

Seeing Death Clearly Ep 60 “How to Make Hard Choices at the End of Life with Chaplain Hank Dunn https://www.buzzsprout.com/2092749/episodes/14879559 

 www.hankdunn.com

“Hank’s Deep Thoughts” https://www.youtube.com/@hankdunn6304

 https://www.instagram.com/hospicechaplainhank

https://www.facebook.com/hank.dunn.9 

hank@hankdunn.com

Article on “Minimal Comfort Feeding”https://www.jpsmjournal.com/article/S0885-3924(24)01116-3/fulltext

The “dementia” advance directive from End of Life Choices New York: https://endoflifechoicesny.org/directives/dementia-directive/

“VSED Resources Northwest” at this link: https://vsedresources.com/

I have a collection of death-positive shirts featuring inspiring quotes and original designs, all created by me. These shirts are perfect for anyone who values open, honest conversations about death, dying, and grief.

 https://www.endoflifeclarity.com/store 

Transcript

[00:00:00] Hank: End of life decisions, whether it's CPR, feeding tubes, or withdrawing, hand feeding, or all these things. Really, for most people, the biggest thing is the emotional, spiritual side of it. Being able to let go at the end of life. 

[00:00:15] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end-of-life coach.

[00:00:22] 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.

[00:00:41] In this episode, I welcome back Hospice Chaplain Hank Dunn for a conversation about artificial hydration, nutrition, and voluntarily stopping of eating and drinking, also known as V SED, at the end of life. Hank talks about the emotional, ethical, and spiritual complexities surrounding feeding tubes and medical interventions at the end of life.

[00:01:03] We discuss when these measures help, when they may prolong suffering. And how society shapes our perceptions of end of life care. Hank shares real stories of patients and families grappling with these decisions. and about the deep connection between food, love and letting go. With wisdom and compassion, he helps us understand why these choices are so difficult and how to navigate them with clarity.

[00:01:28] Thank you for joining us for this episode of seeing death clearly. Welcome Hank to the podcast. Thank you so much for coming back on. We had such a great conversation the first time. And then we realized afterwards that there was so much we could have talked about. Having to do with artificial hydration, nutrition, V said, things around that for people at the end of life.

[00:01:50] And I'm sure there's people that are listening that are thinking, why does he care so much about people eating and drinking at the end of life? Start us off with whatever you want to start us with. 

[00:01:58] Hank: Thanks for having me back. Way back when I was a chaplain in a nursing home first, before hospice, and curious about some of this stuff with feeding tubes, especially with some people in a vegetative state.

[00:02:13] Helping families work through this. My basic contention that I have is kind of the basic thesis of my hard choices book is that end of life decisions, whether it's CPR or feeding tubes or withdrawing, hand feeding or that all these things, they really for most. People, the biggest thing is the emotional, spiritual side of it, being able to let go at the end of life.

[00:02:37] And that's why I got interested in it and got involved with a lot of patients and families as they were struggling with these decisions, dealing with Saying goodbye, dealing with grief, dealing with forgiveness, reconciliation. All these types of things can get messed up in these decisions. Interestingly, we watch Grey's Anatomy occasionally.

[00:02:57] We had a whole bunch that had been recorded. An episode we watched the other day, they were having a hard time. This lady did not want to do a DNR. She was dying. And they called the chaplain, fortunately. You don't see too many chaplains on Grey's Anatomy, but he came in and they did find some issues that she had with a ex husband who was years gone away.

[00:03:17] These decisions are emotional and spiritual in their nature. Today I'll talk about the medical side of these things, but just know behind all that, once you understand the medicine, that might say Withhold or withdraw, then you have to come back and say, so that's, that's it. It's 

[00:03:35] Jill: interesting too, because I think for so many people, it's like food and nutrition.

[00:03:42] And it's just the way that we care for people. For a lot of folks I talk to even, this idea of not feeding somebody at the end of life, it's not just the fact that they're like, well, are they going to start to death? Is that painful? Is it uncomfortable? It's also the fact that. This is what we turn to when we care for people.

[00:04:01] It's like, but no, we need to feed them. We need to keep doing that action. So there is so much that's tied up with it. That's not just about the decision to stop it because the body does not need the food anymore. It doesn't want it. It won't even take it. One of the questions that I have, because I'm actually still kind of.

[00:04:20] Not necessarily unclear, but when they talk about artificial nutrition, that's what they would consider a feeding tube. And that usually is a tube that goes in through the stomach. Or how does it, or does it go through the gnome, or how does that work? 

[00:04:33] Hank: Yeah, for a short term, temporary use, they'll put it. in the nose and then down into the stomach.

[00:04:39] You'll see people in the hospital like that quite often. But if they're going to send them home or send them to a nursing home or assisted living, it's a tube that is just done outpatient. They surgically insert it into the stomach through the skin, and then you can pour in water. Liquid, you know, like Ensure, into the stomach and provides nutrition.

[00:05:02] So, people can live with those for years, actually. That's amazing. We had a doc at our nursing home as a patient who had gone to med school in the 30s. I asked him one time, I says, Did y'all have feeding tubes when you were in med school back in the 30s? He said, Oh, so yeah, we've had feeding tubes for a long time.

[00:05:19] But the big difference. is antibiotics, because there's a lot of infections that go along with feeding tubes. In the 1950s, when antibiotics were really coming on, that's when we got people living so much longer with the feeding tubes. So 

[00:05:34] Jill: interesting. 

[00:05:35] Hank: Since you asked about feeding tubes, let me start with that and say some good news.

[00:05:39] Good things about feeding tubes. You're going to hear me say times that I think, in my opinion, they shouldn't be used. People have a stroke. sometimes can't swallow or have difficulty swallowing. They're evaluated in the hospital, can't swallow, and they might get a feeding tube, especially the start out with just in their nose, and go to a rehab center and with working with a speech pathologist can learn to swallow again.

[00:06:03] A lot of these folks initially were evaluated. They have Difficulty swallowing. They learn to swallow and the tube comes out. So it's a bridge from the acute situation to where they now can be maintained with regular eating. The problem with that is someone might get evaluated in the hospital after a stroke and they say, oh, they can't swallow.

[00:06:24] And I saw many of these folks in the nursing home like this. They're sent to the nursing home and they're never reevaluated again. We had one lady that came to the nursing home with a feeding tube. She was alert. She would look at you. She didn't talk. She didn't interact very much, but she was not in a vegetative state.

[00:06:40] And her family said, mom wouldn't want to be like this. And we had agreed we'd try it for a year. And. If she's still got the feeding tube, then we'll pull it and let her die. But we got this speech pathologist involved and she started working with teaching this woman how to eat. And lo and behold, she could eat fine.

[00:06:58] So she had this stroke, said she can't swallow, had this feeding tube for a year. And sometime during that year, she had regained the ability to swallow. It does need to be reevaluated. So, that's some of the good news. I had a hospice patient once who had had throat cancer and he couldn't swallow, and he had a feeding tube.

[00:07:16] He lived alone. And a nurse aide would come every morning, get him out of bed, get him cleaned up, weed him out in his wheelchair to his kitchen. He had a TV set up over here. He had books and things on this tray table, and he had a couple cans of Ensure sitting right next to him. And a couple times a day, he'd pop a can of Ensure and pour it down his feeding tube.

[00:07:38] I asked him one time, what's it like having this feed tube? He said, oh, it's great. I said, really? He said, oh, yeah. I don't have any pots and pans to wash. I don't have to go to the grocery store. And I get to live in my own home and take care of myself. So, I think maybe I might have the feeding tube in that situation.

[00:07:55] So, that's the good news about feeding tubes. But the bad news indicated already that some of these stroke patients would never get it reevaluated again. The other type of patient would be the, well, has been called a persistent vegetative state. The famous cases of Nancy Krizan and Karen Quinlan, Karen Quinlan in New Jersey, by the way, your home state, that went all the way to New Jersey Supreme Court and said, okay, the family can withdraw.

[00:08:21] She was on ventilator. And that was the issue, taking her off the vent. They took her off the vent and she could still, she could breathe fine without being on the vent. Well, she lived another 10 years with a feeding tube. And the family, as far as we know, never considered withdrawing the feeding tube. As a matter of fact, I saw quotes, I think it was the father, said we want to return her to her natural state, meaning taking her off the vent.

[00:08:45] But they, It didn't go as far as taking her off the feeding tube. Nancy Krizan's case was about the feeding tube that went to the U. S. Supreme Court. She had been in a vegetative state for several years, and the family got permission to withdraw the feeding tube, and she died peacefully. Those are some of the difficult things with feeding tubes.

[00:09:05] Other problematic area would be advanced dementia patients, and this would be Alzheimer's patients or other dementias. What they call multi infarct dementia, which is small strokes in your brain. Other causes of dementia too, but the advanced stages of it is eating difficulties. And when I wrote the fourth edition of my Hard Choices book in 2001, doing research on that, about 30 percent of nursing home patients who had a diagnosis of advanced dementia also had a feeding tube.

[00:09:38] 30%. Fortunately, it's down. to about 15 percent now. Reason this is significant was there was a lot of research that came out in the late 90s where they looked at patients equally disabled advanced dementia patients. Some got a feeding tube and some did not get the feeding tube. The ones who did not get the feeding tube lived about the same length of time as the ones with the feeding tube.

[00:10:02] The ones without the feeding tube was careful hand feeding. And so, if you're dealing with a dementia patient, advanced dementia patient, And they're having trouble swallowing. These pages can be fed. It's difficult. It takes training by the family or the staff at the nursing home, but they can be fed for really long periods of time.

[00:10:24] That ends in general about Feeding tubes, any questions or comments you might have about that? 

[00:10:29] Jill: No, I mean, that's pretty straightforward and pretty helpful. Before I got into this work, I really didn't know anything about a feeding tube. I thought it was just like an IV, like when they put the IV in your arm and that's the way it worked.

[00:10:41] I think most people just don't understand the realities of these things. So I think that was helpful. 

[00:10:46] Hank: You mentioned IVs, which is part of this conversation, which is artificial hydration into patients. Let me qualify. I thought, is this for? dying patients. We know they're dying. IVs can be very beneficial to getting antibiotics and people, other medications, hydrating people.

[00:11:04] They can be helpful throughout one's lifetime. But when patients are dying, there's been a lot of research that they're more comfortable without artificial hydration. That would be something, and I've been with families, they're sitting around the bed of someone dying and they know they're dying, they're not trying to prolong the dying or anything.

[00:11:23] But say, mom hadn't anything to drink in a couple days, should we start an IV just to keep her comfortable? Well, no, because some of the research is IVs don't necessarily quench the thirst. That's a experience in the mouth. So ice chips, sponge swab, you dip in some water, things like that can alleviate the discomfort from dehydration at the end of life.

[00:11:43] One of the things, as I was thinking about this to remind folks, In the last days or weeks of anybody's life, any condition, people who are sick moving toward death, stopping eating and reducing it or totally stopping it is very normal. It happens all the time. I remember years ago I found this article, I think it was in a hospice and palliative care journal, about This doc who went to do some research in India, there's a town in India that it's better spiritually to die in this particular town than anywhere else, and there's funeral pyres all over the city and homes available for people to come.

[00:12:24] They don't provide any services like nurses or food. The family has to bring everything, but the homes are available for these families to use. They'd bring this dying relative and go into one of these homes and they would die in this. town that's better to die in for spiritual reasons. And this doc asked the families, he said, how do you know when to make the journey?

[00:12:44] And universally, they would say, when they stop eating. That's how you know that the end is near. My own father was dying with Parkinson's and multi infarct dementia. It's very difficult to feed. And mom was. Doing everything she can, she called me on a Sunday night and said, we can't get food in your dad anymore.

[00:13:03] I talked to her, cut off the phone, and I booked my flight to Tampa. Cause I knew this is the end. That's what you do at the end of life. You stop eating. I got there down on Wednesday and he died on Sunday, the next Sunday. This is what people do. Stop eating and drinking. As you pointed out, that's what we do as fellow humans.

[00:13:21] We feed people. Whether they're babies, make sure they eat. Or old folks in the nursing home. Make sure they got. Something to eat too. So anyway, it's very normal to stop eating and drinking at the end of life. So again, you could have a doc or nurse to talk about this, but there's a lot you can do. Just feed them as much as they want, not force any more on it than they're interested in.

[00:13:44] Feed them foods they want. You know, it, this is not time to worry about too much salt in food or calories, you know, mom's overweight. Well, heck she's diet. What does it matter? The point is it's very natural and normal to stop eating and drinking at the end of life. So let's talk about VSED. 

[00:14:05] Jill: I know a little bit about it, but I am very curious cause I've never gone through the process with anybody myself.

[00:14:12] But I know I have had people ask me about V CED and if it's something they should consider. I know what I know just from reading and learning, but I'm curious your experiences with it, especially because you do deal with the spiritual and emotional aspects of people going through the end of life. 

[00:14:31] Hank: Okay.

[00:14:32] People listening to this CED? I've never heard of V CED. So it's V S E D. Voluntarily. Voluntarily. Stopping eating and drinking. So, it just goes by the acronym DESENT. People have, since the beginning of time, done this to hasten their death. When they know they're dying, it's just taken so long, and they just stop eating and drinking.

[00:14:53] It'll make the death come sooner. Many jurisdictions, and I know in New Jersey, you have medically dying, where people can ask for medication to hasten their death, take the medication, and anywhere from a few minutes to a few hours, the patient dies. That's not available everywhere, and even in places like New Jersey, where you have medical aid in dying.

[00:15:16] Not everybody qualifies. The doc has to say you're within six months of dying. Well, there's patients, maybe an MS patient, who really is not within six months of dying, but they're done. It's painful. They can't take care of themselves. For them, it's humiliating and they would rather just die. And so, to stop eating and drinking is one way to accomplish that.

[00:15:37] It's based on the same premise that medically dying is, is that we, we patients in this country are autonomous and we can choose to refuse treatment that prolongs our life. So if somebody chooses to refuse a feeding tube or they don't want to be on a ventilator or they're on a ventilator and they want to go off the ventilator even if they were to die, same thing can be applied to food and hydration.

[00:16:04] And to just stop eating fast, if you will, until they die. And I'll give you some links on YouTube. There's a number of links to people who are going through this process, and they talk about it. The A video follows them for several days into this experience. So for competent patients, patients who have decisional capacity can decide for themselves.

[00:16:29] Now, if you're caring for somebody, you do have to do the standard stuff for medically dying. Is this person, are they mentally competent? Do they have mental health issues? Are they suicidal for other reasons, not related to their disease? There would be. questions about that. I mean, you know, anorexia is a horrible condition with a lot of people, especially young girls and who can starve themselves to death.

[00:16:55] But, you know, these are not terminally ill, dying people have chosen to stop eating. These are people who are trying to lose weight so they can look better or whatever reason they might have. And it's a mental health condition that needs to be addressed. We're talking at the end of life. Someone's terminally ill, maybe not dying right now, but they have assessed, I don't want to go on like this.

[00:17:16] And so they choose to stop eating and drinking at the end of life voluntarily. There are some resources, which I'll also give for the show notes on the internet, of suggestions for how to go about this. There's some good books on it if you want to read about it. Do it. under doctor's care. Hopefully the person who might be considering this is under hospice care.

[00:17:39] The hospice team can help the patient and the family because it'd be really hard on the family to watch this. But there's things you can do. There's medications you can take. There's ways to alleviate the uncomfortableness of a sense of thirst and sense of hunger. After Two, three, four days, that's the symptoms seem to go away and it gets to be more peaceful.

[00:18:04] But it is a difficult time, as you can imagine, to choose to do this. Some people recommend, legal folks, that the person, if they wanted to make a video of them saying, I'm choosing to do this, it's my own free will, I don't want to. I want to go on living in the condition I am, and I want to hasten my death.

[00:18:24] There's another reason for the video, and I've heard people talk about this. If the patient is very competent, very clear, they don't want to go on with their life, to put it in a video, because maybe in a couple days they might say, I'm thirsty. I want some of the drink. And so it's one way of reminding that this is what you said last week.

[00:18:46] Do you still agree with that or do you want us to start giving you some water? It's difficult for caregivers if somebody now starts, a competent person now starts asking for food and water to say, no, you said you didn't want any. Just like any living will, you can change your mind. At any point, you said, I didn't want this, and now I want it.

[00:19:05] Maybe the video can help if that person says they want to change their mind. There's a thing called a Ulysses contract or Ulysses agreement. And it's based on the story of Ulysses from Greek mythology, where Ulysses was Traveling by boat, and they had to go by the island where the sirens, these women would be singing, and it was so beautiful, and it would make them want to go to this island, and they would wreck the boat, and they'd all die.

[00:19:35] Ulysses said, Tie me to the mast. All of you, stick wax in your ears. And we'll go by the island so we won't hear and I won't be tempted to go there and miss going by. The Ulysses compact is making a contract. With yourself to protect you from doing what you don't want to do, but might if you have that opportunity, so yeah, people do it with other things, other types of bets with themselves, you know, to lose weight or something like that, they make a compact to do that.

[00:20:09] One of the things I will mention, but I'll, I'll give it to you for the show notes, there's one great website, V SED Resources Northwest, and it's, I think the website's vsedresources. com. Anyway, it's, it's a really, really good with helping with that. Any questions or comments you might have? Now, this is for competent people.

[00:20:27] We're going to talk about demented patients in a minute. 

[00:20:30] Jill: I guess like my question that I'm thinking already is. Are a lot of doctors willing to support people through this or is there a lot of hesitation in the medical community of allowing people to choose V CED as an option for when they end their life?

[00:20:50] Hank: I can't quote you statistics on how many dogs are willing to do it. I'm sure you'll run into some who do not want to participate with any treatment or refusal of treatment. One might have, you're welcome to a second opinion. Hopefully, it would be, be under hospice care. And a hospice doc would be very much in favor of this and have ways of helping someone do this with the least amount of pain and discomfort possible.

[00:21:20] Jill: That makes sense. 

[00:21:20] Hank: So yeah, I'm sure you'll run into some docs, just like, I mean, years ago, I ran into some docs who would not. Order the withdrawal of a feeding tube. So we had to help families find another doctor that was against their principles. Now, what about the demented patient, advanced Alzheimer's patient, who continues to open their mouth and take food?

[00:21:42] I did run into this as far back as the 1990s when I was a nursing home chaplain. We had a family come to us. Mom was demented on the memory care unit. She was going down. She was already losing weight. And they said that mom would hate, if she could see herself, she would hate it. And we just want you to stop the hand feeding and let her die.

[00:22:05] Which we discussed it, administration discussed it, ethics committee discussed it. And we were supportive of this family because they were very convincing that this is what the patient would have wanted. We stopped the feeding and, and hand feeding and water stopped everything. And she was able to die peacefully.

[00:22:23] I can't remember how long it was. I've been involved with several cases like this with advanced dementia patients where hand feeding was withdrawn. Now, what about yourself, myself, who would rather avoid a long, because these advanced dementia patients can live for years with hand feeding and hand fluids, and they're still Take it.

[00:22:48] You offer it to them, they open their mouth, now take it. Are they making a conscious decision that they like their life so much that they want to keep on like this? Probably not. But it's what we do. We eat. So, they, they still do it. So, what has become more common, and again I'll give you some links for the show notes, is a, an advanced directive.

[00:23:09] A lot of people call it a dementia advanced directive. You have your standard when, I don't want anything to keep me alive if I'm, Dying, but make an addendum, which my wife and I did for ourselves last year, that if I have advanced dementia, there are scales to go advanced dementia from one to seven being the worst case.

[00:23:31] scenario. When I get, I think our assay, when we get to stage six or seven, we want hand feeding withdrawn and let us die peacefully. 

[00:23:40] Jill: Oh, interesting. Okay. 

[00:23:41] Hank: The acronym for this is VSED by AD, Voluntary Stopping and Eating by Advanced Director. So you've put it in writing. That should cover your family, cover the nursing home if you're a nurse, cover the hospice if you're in a hospice.

[00:23:56] That you were clear. And I, I think this is important because I would never recommend withholding hand feeding from a dementia patient unless the family brings it up. The mom. Is there anything we can do? She didn't want to keep alive like this. But no one, I can't think of any healthcare professional that would probably recommend that unless a family indicates that that's what the patient would have wanted.

[00:24:21] Yeah. So to do it in an advanced directive is best way. But there are some problems with that. One, if you're in a nursing home, Um, state regulations, if you know, when you start losing weight, understandably, the state is concerned, are you feeding this person properly? Why are they losing weight? And it turns out they're only eating, you know, 40 percent or especially if you stopped feeding them altogether, nursing homes.

[00:24:47] might be concerned that they could be doing for state regulations and not feeding properly. Even though you put it in the living will, there might be some family members that are uneasy with this. I, you know, I like to think I've told my family, I've informed them this is what I want. I don't want to die like my parents did with Years of let me go peacefully, but they might, they might have some problems with it and not even bring it up to the healthcare professionals that are taken care of because they don't want to do it.

[00:25:18] So that could, that could be one of the problems. I wrote three nodes here. Yeah. The family. Oh, the last, the last problem. with the advanced directive thing is that I write this advanced elect directive when I'm competent, I have decisional capacity. I do not want to spend years in a nursing home, totally dependent on others for my care and opening my mouth and taking food.

[00:25:43] I want to avoid that. And so competent Hank has said he doesn't want it, but I keep opening my mouth and taking food. Who do we honor? Competent Hank, who wrote this Living Will years ago, or Demented Hank, who now is continuing to open his mouth and take food. Who do we honor? It's a legitimate question. I hope my family honors the Living Will that I put out, that I took the extra time to put this thing in there.

[00:26:10] So, I have found a third way. Um, just this last November in the, let's see what's in the article, Journal of Pain and Symptom Management, there's a great article written by several hospice palliative care doc, family medicine doctor, Thaddeus Pope, who's a legal expert on these types of things, Timothy Quill, Dr.

[00:26:32] Timothy Quill, who's a big name in end of life care for decades now, they wrote this article and they, they call it Minimal Comfort Feeding. So, there is this, let me back up just one step, there, there is a order that you can use comfort, comfort feeding only. So basically, it's trying to get three meals a day down these demented people, and you can live for years with, with comfort feeding only.

[00:26:59] If you go to VSED. And by advanced directive, the patient will only live for a few days to maybe a week or so once you stop the hand feeding. So there's a compromise between those two, where a person can live for years with comfort feeding only, or a few days with, and they called it minimal comfort feeding.

[00:27:21] Because one of the things that disturbs families and some healthcare professionals is the discomfort of VSAT, thirst, a sense of hunger. And so what this minimal comfort feeding does is you don't have three meals a day. As a matter of fact, the title of the article was in this journal was, quote, has no meal times.

[00:27:45] Minimal comfort feeding for patients with advanced dementia. So, you just look for signs that the patient is uncomfortable. thirsty, hungry, and you only give them enough, just the bare minimum, minimal comfort feeding to get rid of the discomfort. And so, according to these writers, these authors of this study, patients can live from a few days to a few weeks with, with this kind of, or to a few weeks to a few months with this kind of minimal comfort.

[00:28:20] So, and even with, if, let's say, my family could not bring themselves to FECED by advanced directive for my advanced dementia, okay, minimal comfort feeding, let's do that. I'll die sooner. I'll, it, it can seem to address some of the uncomfortable situations. 

[00:28:39] Jill: Yeah. I've never heard of that before. And so I'll have to find that article and read it now because yeah, I'll give you that link.

[00:28:46] Actually. So many 

[00:28:47] Hank: of these, some of these medical journals articles are so expensive. I mean, just 35 bucks to read an article. This one is for free. So I'll send you that link. I'm always interested in free articles. So sometimes that's 

[00:28:59] Jill: expensive. 40. I sold one for the other day and I was like, Oh yeah, no, I'm not paying 40 bucks for that.

[00:29:06] Yeah. 

[00:29:06] Hank: Yeah. Typical. I, I do. I found a couple of journals that are. a little less expensive that have great stuff. General American Geriatric Society, JAGS they call it, is you can be a member for not too much money compared to a subscription to a JAMA or something. And the Hastings Center, the Hastings Center, it's a bioethics center.

[00:29:27] It's very reasonable and they have great articles to help people. So. 

[00:29:31] Jill: Yeah, that one I haven't looked into, but yeah, cause I love to read. All these different articles, and some of them I'll read as much as I can, and then I'm like, well, that's as much as I got out of it. Yeah, yeah, 

[00:29:44] Hank: and you can discern a lot from the abstracts, and so it's helpful.

[00:29:50] Jill: Yeah, but I'm sure not everybody's super geeky like us and want to read these actual journals. Exactly. 

[00:29:58] Hank: Yeah, yeah, no, I find I do continue to read the medical journals, even though I'm not active every day. As a hospice chaplain, but obviously I'm very interested in these topics and this one, again, it just was fortunate we had agreed to this date a while back.

[00:30:15] I think this was before I read this article. I actually got a blog I'm going to post on it. So by the time your podcast is out, the blog will be there. We can probably add that's a link for 

[00:30:27] Jill: sure. Yeah, I'll put all those links in the show notes so people can find all the different websites and the blog and, you know, and I'm sure your book as well.

[00:30:36] I'll put, you know, links in there as well to your book, anything else that you want. 

[00:30:41] Hank: Okay. All right. Well, I'm, I'm pretty much, I was, what else would you want to talk about? 

[00:30:46] Jill: Yeah, I mean, we have just a few more minutes left anyway, but I guess like one thing that will just start us off on a whole other conversation that'll last for eight hours, but maybe you have a brief answer for me on this one that switches topics, but still has to do with end of life.

[00:31:02] And that I mentioned before we got on the call that I'm caring for a friend who's at the end of life. And just last night, the caregiver. Texted me and said, you know, he's seeing people. He said, like, the room is filling up with people. And I know that people that'll say, oh, that's a side effect of the medication or whatever.

[00:31:20] So then I was thinking about it today when I was driving home. I was like, there's got to be research out there that maybe talks about this happening before medication, like some historical documents that can say people were or were not maybe having these experiences before. These medications were introduced at the end of life.

[00:31:40] Hank: Yeah. Yeah. No, that is so normal. And it's all the time. I've had patients tell me that. I never was in the room when they were seeing people, but family, I remember I had a patient one time and the family said their dying man is in his bed and he's looking out the window Where are all those people?

[00:32:00] There's my brother. And these, of course, were people who died. And, of course, the wife looks out there and says, Oh, there's nobody out there. And, and, which is, in my opinion, the very worst thing to say to someone who's seeing somebody. I don't, I cannot explain it. A lot of people say, this is proof that you live after the grave.

[00:32:19] Maybe, maybe not. But what is true, As these people are seeing someone, they are seeing someone, and we need to treat them as if they are seeing someone. One of the key things for anybody who's around them when this is happening, is it comforting or is it frightening? And obviously you wouldn't want someone to be frightened and say, you know, oh, my brother's going to come back to kill me, something like that.

[00:32:46] I've never heard anybody say that. Are you comforted by this? Almost all the stories I've heard is it's comforting. There's a great called Final Gifts. It was written in the early nineties. I think it was two hospice nurses. Actually, they were colleagues on Maggie Callahan and I have to apologize to her co writer.

[00:33:08] I can't remember her name. Yeah. I'll put it in the show notes anyway. 

[00:33:11] Jill: Yeah. 

[00:33:11] Hank: Yeah. So they. What they did in this book is not just this type of thing, seeing, but things people would say, like, I got to get ready for the trip. You know, I got to pack my bags and, you know, people say, mom, you're not going anywhere.

[00:33:25] The thing to say is, where are you going? And they say, you know, I'm, I'm, I'm going over to Philadelphia or something like that. But again, is this fearful or is this helpful? to them. So the title of the book, Final Gifts, these things that our dying family members give us as, as they are going. And Julie, you know, as hospice nurse Julie, she's got her book out.

[00:33:49] She has a whole chapter on, I think she calls it deathbed phenomena or something like that, where she kind of recalls a lot of her experience with, with families and with patients like this. So yeah, there's books out on it. But again, there's some people will say this proves there's a heaven. And even as a chaplain, I personally, I don't think it proves, but it does prove it's comforting to the people who are having it.

[00:34:19] And as a caregiver, that's, what's important to me is. Is it comforting or frightening? So. 

[00:34:25] Jill: Yeah. And that's where, you know, the person that was staying with him last night, that was my, I was like, are, you know, was everybody okay with it? Because it can freak the people out that are in the room. And they were like, no, I was fine.

[00:34:37] I thought it was interesting. I was like, okay, good. That, that's good. As long as nobody was upset by I mean, there's not really anything to be done anyway, but I just thought it was interesting because I know my grandmother did the same thing, and at that point, I didn't know it was normal because nobody really had told me this before she started hospice.

[00:34:56] I was a little confused when she was talking about people that were in the room that I couldn't see, and she was so convinced they were there. But then once I knew that it was normal, I was like, Oh, this is actually kind of interesting. So then I asked her a lot of questions. Who are they? What are they saying?

[00:35:09] Are they singing? Okay, cool. Just tell me all about it. 

[00:35:12] Hank: Yeah. Yeah. Get curious. Of course, the worst thing would be that, Oh, it's the morphine. Let's cut back on the morphine. Well, that's the worst thing to do. Can the medication maybe have something to do with it? I have no idea, but let's not cut back on it and find out that there are now more pain.

[00:35:28] So whatever might cause it. It's real to the people who are experiencing it. 

[00:35:33] Jill: Well, my friend's not even on morphine yet, so it's definitely not morphine in their case. Okay. 

[00:35:38] Hank: Okay. 

[00:35:39] Jill: Which is definitely interesting. I think I'm going to look into researching a little bit more to see if I can find like the earliest documented cases.

[00:35:48] Because even when you mentioned like in India, when people stop eating, that's how they know. So I'm like, it's got to happen in other cultures as well where maybe they're not doing. The medications and things that we maybe do here in America. I don't know. But I love thinking about it and learning about it, because I find it all really interesting.

[00:36:07] Hank: Yeah, yeah. Well, even in the Christian and Jewish traditions of those. Hebrew scriptures and Christian scriptures is a lot of, not necessarily for dying people, but dreams, people coming to them in dreams. So this type of thing has been around for a while. And I'm guessing, yeah, it's probably, probably since the beginning of time until since humans started communicating with each other, I'm guessing it probably happened way back.

[00:36:33] Jill: Yeah, I would think so. But again, I don't know for sure. So 

[00:36:37] Hank: yeah, 

[00:36:37] Jill: I'll keep looking into it or if anybody can find somebody, 

[00:36:40] Hank: you find somebody to do a podcast with. Yeah, I know you will. 

[00:36:44] Jill: Oh, I'm sure I will. You've got a great 

[00:36:46] Hank: guest. So there's somebody who could speak to that. 

[00:36:49] Jill: Yeah, because that is really the fun.

[00:36:51] Not the only fun part, but I think the best part for me is like, I get to talk to so many cool people because of this podcast. So I love it so much. And so 

[00:37:01] Hank: am I one of the cool people? 

[00:37:03] Jill: You were definitely one of the cool 

[00:37:05] Hank: guys. I can die and go to heaven now. 

[00:37:08] Jill: I think there's still that little part of me that anytime somebody.

[00:37:11] is like kind of famous in the end of life space. I'm always really flattered when they want to talk to me and I had your book. I knew of your book before you ever came on my podcast the first time. Yeah, you're for sure one of the cool people, you know, it's like Yeah, your book. And again, your book is great.

[00:37:29] I know we talked a lot about it in the first episode and I'll put the link to our first episode in this one show notes in case somebody listens out of order. And yeah, I mean, I even used your book as reference a couple of months ago when I did a class for my local library where I was talking about different treatments at the end of life and I was like, got to get my book out.

[00:37:50] So it's It is really helpful. I definitely am so glad that you wrote it for people to be able to help when it's time to make these decisions because It is a really difficult time of life for people and that's understandable, but it doesn't have to be as difficult if we could have the information that we need.

[00:38:08] Hank: Yeah. 

[00:38:09] Jill: Okay. 

[00:38:09] Hank: Well, thanks for the conversation. You're doing a great job. 

[00:38:12] Jill: Yeah. Well, thank you so much for coming back on the show again. I really appreciate you taking your time and again, any links or anything will be in the show notes so people can easily find them. In my next episode, we switch gears from today's episode as I sit down with Katina Jones, also known as the Purple Priestess, to explore her remarkable journey from journalist to spiritual guide.

[00:38:37] Katina shares how her mother's Passing at a young age led her to seek meaning in death and beyond a powerful visitation dream and an unexpected Psychic reading set her on a metaphysical path revealing deep connections. She never anticipated She discusses her work as a hospice volunteer the profound call to be present at the bedside of the dying And how she ultimately founded the Purple Priestess to support others through spirituality and end of life transitions.

[00:39:08] Tune in next week to hear how she followed the signs, listened to her calling, and found purpose in helping others navigate death and grief. 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.

[00:39:24] 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.

[00:39:41] 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.

[00:39:57] Thank you, and I look forward to seeing you in next week's episode of Seeing Death Clearly.