All of us are going to die someday. And most of us will have loved ones who will die from disease or old age before we do. In fact, some of you listening right now may be dying yourself or watching a loved one die.
Yet most modern Westerners aren’t prepared for the actual event of dying because we’ve done such a great job cordoning it off from the rest of life. If you’re a young person, you’ve likely never seen a person who’s dying.
Consequently, there are lot of myths and misconceptions about the dying process. There’s also a lot of fear — both for the person dying and those watching them die.
But my guest today has devoted herself to educating people about the dying process and showing people that it’s more than a medical event. Her name is Barbara Karnes. She’s a hospice nurse and the author of several books about dying and how to bring it back to the natural part of life that it is.
Today on the podcast Barbara and I get into what to expect when you’re in the twilight of life and how you can make the experience less scary and more meaningful.
- How death used to be a part of everyday life and how we cordoned it off in the 20th century
- The myths people have about death thanks to movies and TV (hint: you can’t close dead people’s eyes)
- A detailed walk through the stages of dying by disease or old age
- How you can tell someone is days or hours away from dying
- Why Barbara compares death from old age or disease to childbirth labor
- Why “people die like they live”
- What do you do when you know a loved one is dying
- What you can do to make the dying experience of a loved one more comfortable
- What good hospice care is like and when you should consider hospice for yourself or loved one
- What Barbara has learned about life after spending decades as a hospice nurse
- And much more!
I know death isn’t a pleasant topic and you’re probably not keen on reading about what to expect when you or a loved one dies. But reading Barbara’s work really cleared up some misconceptions I had about the dying process and even took a bit of the fear out of it. She shows death for what it is — a natural part of life. If you or someone you know has a terminal illness, pick up some of Barbara’s pamphlets at her site or on Amazon. If you have a parent who is in the twilight of their years, her work will provide you with some much needed insight about what to expect and how to prepare for their eventual departure from this life.
Listen to the Podcast! (And don’t forget to leave us a review!)
Read the Transcript
Brett McKay: Brett McKay here and welcome to another edition of the Art of Manliness Podcast. Death, dying, it’s not a topic we would like to talk about in modern day life, particularly in America where everything is awesome and everyone will be eternally forever young.
As a result of our hesitation about talking about death and cornering off to the hospitals or the nursing homes, there are lots of misconceptions about death and the dying process. A lot of myths. Consequently, a lot of fear about it.
From my own experience, I can count on one hand the number of people close to me who have died. I never actually saw them go to the dying process, I saw at the funeral when they’re gussied up in the casket. This is all going to affect us at one point in our lives. Either we’re going to die because we get a terminal diagnosis, cancer, something like that, it’s untreatable, or we have a parent who is going to be dying because of old age, or we’re going to die one day, eventually, some time. It’d be good to know what exactly is going to happen to us physically, emotionally, mentally as we get closer and closer to death.
My guest today has spent her life trying to educate people about the dying process, The Dying Experience. Her name is Barbara Karnes, she’s a hospice nurse as well as a writer and speaker. She goes around the world, around the country in America talking and sharing with people what the dying experience is like to prepare them for this experience and how they can make the process more meaningful and less scary.
Today on the podcast, we’re going to discuss dying. What’s it like? The physicality of it, the psychology of it, the emotional aspect of it, the social aspect of it, and what we can do to prepare to die today. I know it sounds like a downer podcast, but I think you’ll be surprisingly be uplifted at the end of it, because you’ll have some knowledge that you can actually use for an experience that we are all going to encounter at some point in our life, whether you are rich, poor, it doesn’t matter. Death affects us all.
Without further ado, Barbara Karnes in The Dying Experience.
Barbara Karnes, welcome to the show.
Barbara Karnes: Thank you.
Brett McKay: Can you tell us a little about your history? How did you become a hospice nurse?
Barbara Karnes: I graduated from nursing school in 62′ and thought, “Wow! I’ve made a huge mistake. I should have been a social worker.” but then this, Elizabeth Cooper Ross came forward, Dr. Elizabeth Cooper Ross with how poorly we Americans were treating people who were dying in the hospitals. At the same time, in the England, Dame Cicely Sounders, was creating a plan of care for people who were dying and she called it hospice.
The idea was that hospice would throw out all the rules that the medical establishment was using to take care of people who were dying, and that they would treat them differently. They could have the dog on the bed and it wasn’t about the medicines, it was about quality of life. I thought, “This is what I want to do.”
I got back involved in nursing and became a hospice nurse. I was a bedside hospice nurse for five, six years, and then got into administration and eventually was the director of two different hospices in Kansas City.
I liked the holistic approach to care, that we’re more than a physical body, we’re emotional, mental and spiritual beings, and the hospice approach dealt with all aspects of the person. As well as working with the family, where our medical model is really just focused on the physical body and on the person that’s sick.
Brett McKay: We’ll talk a little more in detail about what exactly hospice care is and what’s involved with it. Before we get there, you talked about how there was a need for hospice care because in America, at least, and probably in other western countries as well, we’d started treating death as a physical disease almost, and that we’ve become really uncomfortable with it. We isolate it. We send people who were dying to the hospital and we just forget it. Why are modern Americans so uncomfortable with death? Was there a time in our history when death was more integrated into our daily lives?
Barbara Karnes: Very definitely, there was a time, because grandma used to live at home. We were a multi-generational, all-in-one home, and when grandma got sick, she didn’t go to the hospital, she went to the upstairs bedroom and there she died. When she died, we didn’t call a funeral home. We washed her body and we put her in the parlor and family and friends and neighbors came to our home and paid their respects.
Today, grandma lives in a senior citizen high-rise, and when she gets sick, she goes to the hospital, and from the hospital she goes to a nursing facility and there she dies. Because we’re not multi-generational, all-in-one home, we’re scattered all over the world. Family comes in the last week or so before grandma dies. We see her in the coffin and in a funeral home.
We have made dying, as you said, a medical event. When in reality, it’s not medical. Dying is social. It’s a communal event. We’ve taken it out of the home. We’ve taken it out of the normal naturalness of it. We’ve made it something to be frightened off. We’ve made it a pathology. Where in reality, life is terminal illness. We’re all dying from the moment we’re born.
We Americans have become very afraid because all we have is television and the movies show us what that death is like. We’re not experiencing it firsthand with those that we care about.
Brett McKay: We’ll talk about some of those myths about death and dying in a bit. What do we lose in the process? What have we lost in the process of isolating our loved ones who are dying into a hospital somewhere? I’m sure the individual who’s dying loses something. I’m sure those who survived also lose something as well. What is that exactly?
Barbara Karnes: We’re losing the normalness of it, and replace that normalicy with fear, with the unknown. Of course, we’re always afraid of that which we don’t know or haven’t experienced before. For the person that’s dying from a disease or old age, there’s a process, but most of us don’t understand that there’s a process to dying from disease or old age. Most of us think a person is alive one minute and dead the next.
We start trying to take care of people who can’t be fixed, as if they can be fixed. Then you add your fear of, “I don’t want to talk about this, because I don’t know what to say or I don’t know what to do.” We have an isolation that goes around the person that has the illness and is approaching death. As well as an isolation with the family, because not only do people not know what to say to the family. They are all by themselves. We don’t talk about dying. We don’t talk about death. It’s almost like if I talk about it then I probably will die, so I better not bring it up.
Brett McKay: Right. Let’s about this. One of the things I just found so enlightening about your book is you get into details, the nitty-gritty details of what dying is actually like. I’ve probably seen … Off the top of my head, I can count on my fingers on my single hand how many dead people I’ve seen. They’d actually died. I’ve had grandparents that died. That happened when I was a little kid. I have never actually seen someone go through the drying process.
Reading your book, talking about what goes on, was really helpful. It took some of the mystery away from it. Before we actually talk about what death is actually like, or dying is actually like. What are some of the biggest misconceptions or myths that people have about the process of dying?
Barbara Karnes: Number one, I think that … Look at your movies. How someone is saying something very profound, they’re giving this message and then they close their eyes and their mouth and they’re dead. People in the hours to minutes before death, they’re not saying something profound. They’re generally non-responsive. If they are talking, they’re probably not making any sense because they’re other worldly.
One of the misconception is that we literally think we’re alert and alive and talking and then one minute later we’re dead. That’s not how it works. Even with what I call fast death, is where you’re in an accident or you have a heart attack. Even then, you’re not saying something profound.
We also expect people to have their eyes wide open. People don’t have their eyes wide open when they die. They have their eyelids open kind of a half-mast, but not wide, wide open and a blank stare. In the movies you see someone take their finger and their thumb and they close the person’s eyelids. If you do that, their eyelids don’t stay shut. They open right back up, but people don’t know that.
Brett McKay: I’m sure it freaks them out when they come back open.
Barbara Karnes: It does. I’ve just scraped everyone off the ceiling when that happens, because that … The movies, it doesn’t happen like that, or on television. That’s our only role models anymore, because we’re not at the bedside when someone who’s dying. When we are there, we’re there because we’re emotionally involved. When you’re emotionally involved, you don’t see what’s really happening because everything that you perceive comes through your culture, your role models, your stereotypes, your fear, your belief system, your experiences, and all of that distorts what’s really happening.
Brett McKay: We’ve hit on some of the things, what dying is really like. You’re not leaving your eyes open. There’s usually not profound words spoken at the very end. Let’s talk about what dying really is like. I’m sure people who are listening, unless they’re doctors or nurses in hospice as well, they probably never seen someone die or go through the process of dying. What are the signs that someone is beginning, what you call … I think it was interesting. You call dying, liking it to a birth labor. What are the signs that someone is getting close to dying, and why do you liken death to pregnancy labor?
Barbara Karnes: Okay. I’m going to back up a little bit for labor, and say that there are just two ways to die. We in the medical profession make it really complicated, and it’s so easy. You either die fast which is getting hit by a truck or a heart attack or suicide, or you die gradually. Gradual death is either through a disease or old age. Gradual death has a process. It doesn’t just happen. If it just happened, it would be fast death.
That process of gradual death or dying gradually begins two, to three, to four months before death actually occurs. Three things start happening. One, is a person’s eating habits change. Food is what holds us on this planet. Food is our anchor to this world. If the body is preparing to die, it doesn’t want the grounding, or the energy, or the hold that food gives us.
The person, all by themselves, will cutback and stop eating over this period of months. That’s the hardest thing for people to understand. It’s not that the person does not want to eat. It’s literally they can’t eat. They want to because they see what it does to us, but their body is rejecting the food. Gradually they stop eating.
They gradually start sleeping more, and over a period of months, they will sleep more and more and more until they’re asleep more than they’re awake. The third thing is they start withdrawing from the world around them. They’re not interested in their favorite football team. They’re not interested in socializing. Eventually, on this continuum of months, right up to death, they’ve gone within and they’re not … They’re totally withdrawn and they’re not interacting with other people, and they’re not interested in what’s going on.
On this continuum, there comes a point, one to three weeks before death arrives, where a person begins what I call labor. We go through labor to get into this world. We go through labor to leave it. The labor to leave this world is harder on us, the watchers, than it is on the person that’s dying, because they’re so withdrawn and removed from their body that they’re not experiencing anything in this, in what we consider a normal way.
When labor begins, that’s one to three weeks before death occurs. A person is sleeping almost all the time. They’re sleeping with their eyes partially open, kind of a half-mast. They’re picking at the air, or their bed clothes. They’re restless and agitated. They maybe puffing and you just see their lips coming together and blowing a little bit. They’ll do what I call start and stop breathing. Where you look at them and you think, “Oh my gosh! He just died. He’s not breathing.” and then he starts breathing again. Start and stop breathing.
What you’re going to remember when labor begins is that nothing in the physical body works right. It’s all shutting down. You can have a fever. Fever goes with dying. You’re not going to do a bunch of lab work to see why a person has a fever if they’re in the dying process. You’re going to get them some Tylenol and cool cloths. The body is shutting down. Part of their body can be hot, another part can be cold. You’re just going to remember nothing works right.
There are changes that occur in the hours to minutes. Let’s do days. Days to hours. That key change is called modelling. When it’s a bluish-purple to the hands and the feet and the legs. It’s the body shutting down. The circulation isn’t normal anymore.
Days to hours, or hours to minutes. Hours to minutes, a person is generally non-responsive. That means their eyes are partially open. They can be talking but they’re not making any sense. They don’t respond to this world. You call their name, they don’t respond. You touch them, they don’t respond.
There you start breathing like a little fish breathes. Just picture a fish and how it breathes in the water, how its mouth open and closes. That’s how their breathing in the hours to minutes before a person dies. I think it’s important to know that a person can hear you in the moments before death. You talk to that person even though they’re not responding. Even though it appears they don’t hear you. You talk to them. Tell them what’s in your heart. Say your bye-byes. This is an opportunity to love them as they go from this change from this world to the next.
Their breathing gets slower and slower and slower till they’re taking maybe five or six breaths a minute, and then they stop breathing, and then they’re gone. After they stop breathing, they may take one or two or three long, long spaced-out breaths where you think they’re not going to take one and they do. That’s scary.
That’s how we die. Even a fast death will do the hours to minutes that I’ve just talked about. If you know what to expect, then you know that mom’s doing a good job. You know that she’s doing what she’s supposed to be doing, but nothing bad is happening. Is very, very sad when someone we care about dies. It doesn’t have to be bad. There is a normal way that people die and it’s not bad. It’s not scary if you know what to expect.
Brett McKay: Right. That was really fascinating. Actually, I did not know that. I did not know that’s how it went down. Also, what surprised me to too, I didn’t know this. Actually, we’re talking to a friend while they’re reading your book, her father passed away from cancer. She went through it in details. Literally, it followed everything that you said.
One thing she has mentioned too, and you wrote about in your book is that talking about how your body is failing. There’s issues of incontinence, and you’re going to be going to the bathroom in the bed. You have no control over it. It’s really messy. My friend, she was changing sheets quite a bit for her father. I did not know that happened.
Barbara Karnes: Yup, and I should have mentioned that. In the weeks to before death, and for sure, in the days to hours before death, a person is going to peeing and pooping the bed because they’re releasing everything in their body. It’s just letting go. They’re in control of their body anymore.
There’s also a point of confusion. We get really upset when they start … In the weeks before death, they start talking and they’re not making any sense. They’re talking about hearing people and things that we don’t see and we’d get real scared.
What that confusion is, is think about they’re sleeping more than they’re awake. Their world is not this world anymore. They’re talking about their dreamworld. What they’re talking about is making sense to them, but not to us. If they’re not a danger to themselves, falling out of bed or hurting themselves, you don’t have to give a lot of medications. Listen to them. They’re telling you what their world is like. This is perfectly normal.
If someone gets very, very agitated and you think they’re going to hurt themselves. Then of course, you’re going to get some Haldol or Ativan or something to calm them down. Generally, that confusion … People will say, “Oh! They’re hallucinating and they’re delirious.” They’re telling you what their world is like. We don’t have to be afraid of that.
Brett McKay: Another thing that you mentioned I think that confuses some people, happens in some people who are dying. I’ve heard it to family friends who died. This happened to them. The day before they actually died, they had the sudden burst of energy.
Barbara Karnes: Yes. I call it the calm before the storm. It doesn’t always happen, but it happens enough that we hear these stories where, “Dad has been in bed for a month and he’s been sleeping all the time and not eating at all. He wakes up and says, “I want a steak dinner, and I want a bake potato with my steak, and call the kids and get them all over and we’re going to the dining room table.” He does, and he visits and he eats his food and what we think is the miracle has happened. He’s going to be better. All of our prayers have answered, “This is fantastic.” 48 hours later he’s dead. You think, “What happened here?”
Now, this is purely me. It is not medical. This is just what Barbara Karnes came up with, is I think that nothing operates in a void. As our physical energy starts withdrawing from our body, since there’s no void, a spiritual energy starts filling in that space to help us get from this world to the next.
Some of that energy laps over into the physical, and we have this wonderful little gift of interaction. We’re so startled by it and so caught up in our expectations that we miss the gift. We’re in the forest and we don’t see the trees. It isn’t till the visitation that we then start saying, “What in the world happened?” I think it’s just a little gift that some of us get.
Brett McKay: Interesting. You said this several times in your book that people die like they live. What do you mean by that?
Barbara Karnes: There are dynamics to dying. One of them is we die the way we’ve lived. Dying is just really one more experience in life. It’s one more challenge that all of us are going to experience. We are going to deal with that challenge in the same way that we’ve dealt with any other challenge in our life. If I have runaway from my challenges in living, then I’ll be in denial about my approaching death. If I’ve been organized and very much of a doer, then I’ll have my DNR in place. I may even write my own obituary.
Dying doesn’t change our personality. It intensifies it. If I’m ornery and cantankerous in living, then I’m going to be an absolute monster in dying, because it’s not going to change who I am. We don’t suddenly go from being ornery to being a saint. It just intensified our personality.
We use the word dying all the time, and if you think about it, that’s a misnomer, because life is a terminal illness. From the moment that we’re born, we begin to die. Cells in our body die everyday. It’s all a part living. Really, the time that I talked about the dying process, it’s really our final act of living. It’s a living process.
Brett McKay: There’s no deathbed conversions.
Barbara Karnes: No.
Brett McKay: All right. Get it right now. Right?
Barbara Karnes: Yeah. You better do it while you’re very alert and very grounded, because as you’re dying there isn’t going to be time to say, “I change my mind.”
Brett McKay: I think because we’re so unfamiliar with death. I’m talking we, as a society. We don’t know how to act around people who are dying. Your friend gets that diagnosis of cancer and they only have six months. You just don’t know what to do. Do you talk about it? You would avoid talking about it, because you don’t want them to feel uncomfortable. How should we approach individuals that we know who are dying? How do we approach them and talk to them and interact with them?
Barbara Karnes: I think it depends upon the closeness of your relationship with them. If they’re a neighbor and you only see them when they’re out walking and you wave and say hi, you’re not going to suddenly show up on their doorstep and say, “I hear that you’ve got a life threatening illness. Talk to me.” If it’s a close friend that has been given a diagnosis of a life threatening illness, of course, you’re going to want to support and be there with them.
I think that you first look to the depth of your relationship with the person. That’s going to determine the depth of the conversation that you’ll have with them. The other thing is you want to see what they’re comfortable with.
I just wrote an article for the blog about a person who has a life threatening illness and she said, “I am so tired of people asking me how I am, and what I’m doing and telling me that I look good.” She said, “I know I don’t look good. What can I say to people who talk to me, and I don’t want to talk to them?” I said, “You can say to them, “You know, I’m fine. The journey has been a rough one and I don’t want to talk about it.” Be honest. Be open.
My key there is to be yourself, and if you have a relationship that’s close enough with the person that you talk about stuff, then talk about this, because you may be the only that has approached this person to say, “Let’s talk about it.”
Brett McKay: What about if you are the person? You go to the doctor and the doctor says, “Look. You’re dying. You need to get your affairs in order.” How do you … I’m sure there might few who are listening to us right now that that might be them. It might happen to some of us at some point. We don’t know. How do you respond psychologically to that? How do you come to terms with your pending death?
Barbara Karnes: Very interesting, because I’m not sure we do. Number one, is in the months before death. When we’ve been told by a physician that we can’t be fixed. I don’t think we believe it. I don’t think we can comprehend our own death. I don’t think we can see that in the months before death. It’s, “They’ll be a cure.” “The doctors are wrong. They’ll be a miracle.” We can’t really see ourselves as being dead. Even though we can talk about it. In our core, we don’t really believe it.
As this progression … As we get closer to dying and we get to weeks before death, then that knowledge, that intellectual knowledge that we haven’t really grasped becomes real. We know indeed we are dying. We may not share it with anyone, but in our very core, we’ll go, “Yeah. They were right. I’m going to die.”
What we also have at that time is we’re so disconnected from this world. We’ve spent this months withdrawing, sleeping more, eating less. We’re going within but we’re not … Our mind is more within, and it’s not thinking like we normally think. If that makes any sense at all. It’s really hard to describe it.
When labor begins, the one to three weeks before death, we really don’t care. We just don’t care, because we’re just so withdrawn that our emotions are different. That fear that we all are going to have, every single one of us, are going to be afraid as we approach death, because it’s the unknown. We haven’t done it before. We’re always afraid when we do something new.
That fear can be manifested in restlessness. It can be in agitation. When I see someone really, really in labor and agitated, I put that on fear. Can be lack of oxygen, but more than likely it’s fear. I’m going to do relaxation techniques.
They aren’t at a point where I can sit down and have a conversation with them. I can still talk to them because they can hear me. I will try and help them relax and be more at east.
Brett McKay: It seems like when we talk about hospice care, is that what hospice care is all about? I think when people hear hospice, the typical image they have is they come to your home, or you go to a nice little place where they just help you care for the dying. What is exactly is involved in hospice care? Not just good hospice care, because I think you talked about that in your book. You make a distinction between hospice care and good hospice care.
Barbara Karnes: Right. Hospice is changing a lot. It’s getting more and more difficult to find a good, and I put that in quote, hospice. For hospice, you want some … You want a hospice that has the same nurse coming every time, because you want to trust and develop a bond with that nurse, because that nurse is going to guide you through this experience.
I think the key role for hospice is education, is to educate the family and those significant people that are going to be involved with that dying time, that process. That they understand it, so that they can put their fears aside.
It is hard work. It is 24/7 taking care of someone dying at home. It isn’t easy, but it is a gift. It is an opportunity to have a closeness, that it’s even hard to have words to describe how great you will feel after you’ve done it. It’s scary to think about. Yeah, and bringing mom home and she’s going to die here and dead … How am I going to take care of her?
Hospice will bring in nurse’s aids who will give her bath and change the bed. They have chaplains to give you spiritual guidance if you want it. They have social workers who can help you connect with community services and just give you the emotional and support through this experience. They have volunteers that will come in and help stay with you, stay with mom, so you can go to the grocery store. Just to have a little respite time.
All of these is what hospice can give. The really sad thing that I’m seeing today is that hospice referrals come when a person looks like they’re dying, because we think hospice takes care of people who are dying. When a person looks like they’re dying, it’s when labor begins. Before that time and the months before death, they look frail, they look sick, but they don’t look like they’re dying.
We wait till the labor begins and then hospice comes in, they can’t really do anything for the patient other than teach mouth care and positioning because the person who’s dying is so removed form their physical body that you’re just going to do physical care for them.
The family is in crisis because no one has said to the family, “Mom is dying now.” We’re talking a matter of days or a week or so. They’re in crisis. If you get hospice when the dying process begins, months before death, then the hospice people can work with the patient and help them live the best they can within the confides that their body and disease have put them in. They have time to educate and support the family.
The key to hospice that they don’t always have time to do is to teach, to teach the dying process, to teach how to care for the person. They are the support, but it’s all about education.
Brett McKay: I’m curious for our listeners who are listening is they might have parents who are in their 80s and 90s and maybe they’re healthy and going active, they’re strong right now. How do they know at which they should bring in hospice, because their parent is dying of old age?
Barbara Karnes: Okay. Old age is a different ballgame, and that old age, a person will have the same signs of approaching death, they’re not eating, they’re sleeping more, they’re withdrawing. Those signs occur over years instead of over months, where gradual death from disease occurs over months. There’s a bigger timeline.
When you get to the point where labor begins, where the person who’s just old is sleeping all the time, is not eating, is totally withdrawn. That’s the time you’re going to think, “Okay. Now, let’s call hospice and see … Let’s talk to the physician and see if the physician will refer us to hospice.” Because you have to have a physician referral to be on the hospice program.
Brett McKay: Okay. If it’s disease? When do you … As soon as you get the diagnosis or should you wait a little bit? When should you do decide to bring in hospice?
Barbara Karnes: If the doctor has sat down with you and has said, “Look. There’s nothing we can do. We don’t recommend any chemotherapy or radiation. We can’t fix you.” Then I think that that’s a very appropriate. Of course, I need to know what the disease is. For a lot of cancers … Remind me to talk about dementia.
COPD, it’s unpredictable. That’s harder to know when to bring on hospice. Congestive heart failure. If you decided you’re not taking all the meds that they have, then that would be the time to call hospice. The cancers, if you’re not having chemotherapy, depending upon what kind of cancer, maybe the time. You have to go through your doctor. That’s whole another issue too because doctors are often hesitant to recommend hospice. They’d rather do the treatments.
Brett McKay: They want it fixed.
Barbara Karnes: Yeah. That’s what they’re taught to do. My philosophy is just because you can do something medically doesn’t mean that it’s appropriate to do it.
Brett McKay: Right, because you might be able to extend someone’s life by a month or two, but in the process, it could probably do more damage or just make you really uncomfortable and make everyone’s life uncomfortable. Right?
Barbara Karnes: Right. Your quality of life for living that extra month or two isn’t worth it. If you had known, would you have traded the pain and the sickness and the debilitation for another month? Some people would say, “Yes, I would. I don’t care.” Other would say, “No. I really would have rather been able to interact with my family more to not be so sick and debilitated to have taken this gift.”
That’s what … A gradual death is a gift. It’s a gift of time. A lot of us throw that gift away. When we’ve been told we can’t be fixed, be basically stop living. It’s a gift. An opportunity to do and say that which we want to do and say. That’s another thing. Hospice tried to help people see that they’ve been given a gift. How could we help you utilize this gift in the very best way?
Brett McKay: You talked on this a little bit on your book. It actually is very timely. It’s the issue of advance directives and living wills. It’s very curious to talk to someone who’ve seen people, what it’s like to be in the last stages of life. You have a terminal condition and they’re putting feeding tubes in you and hydration tubes.
My wife and I are trying to figure, “Okay. What are we going to do? I’m unconscious, but I’m terminal. There’s nothing the doctors can do. Do I want a feeding tube? Do I want hydration?” I’m curious, from experience of decades of working with people and watching people who have gone through the dying process and have been sustained maybe beyond the natural course of life because they’re had treatment or hydration or feeding tubes. Is it worth is, or should we just let nature take its course? I have no idea, because I’ve never seen that process, so I have no idea what decisions I should make.
Barbara Karnes: I think it depends upon the person’s personality. My father in law, my stepfather said, “I want absolutely everything done. I want everything. I’m on a ventilator, I want to be brain dead for three days before you disconnect the ventilator.”
Some people want to do absolutely everything. There are other people that will say, “Look. If you can’t fix me, then I want to be able to live with dignity. I want to be able to live as best that I can as long as I can. Living is the operative here. I want some quality. I don’t want to just breathe.”
We have the medical capabilities to keep a physical body breathing for a long time after actual life and the interaction and enjoyment of life is gone. You have to ask yourself, “What do I want?” If you decide, “I don’t want to just be hooked up to a machine and that’s all, just my body breathing.” The natural way we die is not eating, and that includes not drinking.
You wouldn’t want a feeding tube or IVs for fluid because you would be going against the natural way that a body dies. You would just be prolonging. Again, you have to look at the disease and how fixable it is. If I can have an active life by having a feeding tube, and I’m not in the dying process, but whatever my disease is, that I can’t put food in my stomach but I can still walk around and I can interact then, yeah, I’m going to have the feeding tube.
If the doctor’s can’t fix me and I’m in the dying process, then no, I’m not going to have a feeding tube because that’s just going to prolong my leaving this world and my dying. Are you with me?
Brett McKay: Yeah, I’m with you.
Barbara Karnes: Let me say about fluids, because this is so important. That is the normal way that we die is being dehydrated. When we die, when we’re dehydrated, the electrolytes in our bloodstream get out of whack and our calcium goes up and we close our eyes, we go to sleep and we don’t wake up. That’s how we die. That’s part of the reason we stop eating and we stop drinking so that we get to that place where we close our eyes and we go to sleep and we don’t wake up. We interfere with that normal process and that easy, gentle way to die when we start doing IV fluids.
Brett McKay: It’s not uncomfortable. That’s the thing I was worried about, it’s, “Man, is this going to be uncomfortable if they …”
Barbara Karnes: No.
Brett McKay: It’s not. Okay.
Barbara Karnes: Dehydration, if I’m healthy and well. Yeah, that’s uncomfortable. If I am in labor, in the labor of dying, one to three weeks before death. Dehydration is not uncomfortable. Always, always, always offer food and water. You always offer it. Right up to the last breath. Offer. Never deny. Offer, but don’t force. Don’t force.
Brett McKay: Barbara, I’m curious. This has been a really just fascinating conversation. I’m 33 and I don’t have any signs of a terminal illness. I hope living another 60 odd years, hopefully. Is there a way for me and other young people who are listening to this to start preparing for death right now, or is it something you just have to deal with once it comes?
Barbara Karnes: Great question. The first thing that everyone should do is have a durable medical power of attorney assigned to someone. You should have your advance directives filled out so that if there is an accident, you can die, be allowed to die the way you want to be, want to. If you don’t have an advanced directive, then you’re going to die the way the medical profession wants you to.
If you have opinions, you don’t want to be on a respirator for seven years, then you’ve got to have an advanced directive and a durable medical power of attorney. That’s a must.
The second thing you do to prepare for your death is you live your life the very best you can. You recognize how precious being alive is and enjoy the moment. Enjoy living. We get so caught up in our durable wheel of routine that we forget to really … The old cliché, smell the roses. I think that’s the best preparation for dying that there is, is to live and enjoy the life that you have.
Brett McKay: Barbara, thank you so much for this enlightening conversation. Where can people learn about your work?
Barbara Karnes: You can go to my website which is www.gonefrommysight.com. You could read my books. You can ask me questions. Go to the website. If you have questions, go to the blog section and ask me questions and I’ll write about it. If you’d give me an e-mail address, I’ll give you a personal response and answer your question personally as well.
Brett McKay: Barbara Karnes, thank you so much for your time. It’s been a pleasure.
Barbara Karnes: Thanks Brett.
Brett McKay: My guest today was Barbara Karnes. She is a hospice nurse as well as the author of several works on The Dying Process. She mentioned Gone From My Sight, it’s a really great little book. You can find it on amazon.com. You can find more information about her work at barbarakarnes.com. Really, go check it out.
Even if you don’t think you’re dying or you know someone is going to be dying anytime soon. Really, read the stuff because it really will enlighten you about the dying process. It was a completely eye opening experience for me to learn this information. I’m actually feeling not completely comfortable with death, but I’m not feeling as uncomfortable about it as before.
That wraps up another edition of the Art of Manliness Podcast. For more manly tips and advice, make sure to check out the Art of Manliness website at artofmanliness.com. If you enjoyed this podcast and you’ve gotten something out of it, I would really appreciate if you’d give us review on iTunes or Stitcher. Help us get the word about the show.
As always, I appreciate your continued support. Until next time. This is Brett McKay telling you to stay manly.