Leaving a Legacy of Peace: A Gentle Approach to End-of-Life Planning

We often avoid end-of-life talks because we don’t want to "upset" anyone. It’s normal to feel stuck, but avoidance often leaves a mess for the people we love most. In our latest episode, we’re breaking down how to "come in sideways," choose the right moments, and keep these conversations soft and present. 🎧 Listen now and learn how to turn a difficult talk into a moment of true connection.  https://bit.ly/45f09Y3

In this Episode: 🎙️

• 03:59 - Secrets for Longevity from People in their nineties: Anthony Sacco, Navy Veteran and Sub Shop Owner
• 07:05 - Recipe - Cheese Steak Dip
• 08:11 - How to Talk about End-of-Life Planning with a Family Member
• 15:33 - Discussion - How Do You Approach End-of-Life Planning Conversations?
• 17:53 - "The Frist Day of the Rest of My Life" - Greg, After 7 Years of Alzheimer's Caregiving
• 19:35 - Outro

#EndOfLifePlanning #AdvanceCarePlanning #EveryoneDiesPodcast #GriefEducation #HospiceCare #DeathDoulas #CaregiverSupport #AgingParents #FamilyConversations #DeathPositivity #SeriousIllness #MedicalDecisionMaking #EndOfLifePlanning #HardConversations #LegacyOfLove

Chapters

• 0:00 Intro
• 3:59 Secrets for Longevity from People in their nineties: Anthony Sacco, Navy Veteran and Sub Shop Owner
• 7:05 Recipe - Cheese Steak Dip
• 8:11 How to Talk about End of Life Planning with a Family Member
• 15:33 Discussion - How Do You Approach End-of-Life Planning Conversations?
• 17:53 "The Frist Day of the Rest of My Life" - Greg, After 7 Years of Alzheimer's Caregiving
• 19:35 Outro

Transcript

Hello and welcome to Everyone Dies, the podcast where we talk about serious illness, dying, death, and bereavement. I'm Marianne Matzo, a nurse practitioner, and I used my experience from working as a nurse for 47 years to help answer your questions about what happens at the end of life. Today, we are republishing our podcast about advanced care planning.

But first, let's have a look at a research study about how appointed decision makers, otherwise known as durable power of attorneys, interpret information about prognosis. A prognosis is a medically informed prediction about the likely outcome of a condition. Of course, no one can tell you for certain how a condition will unfold, but your healthcare practitioner can tell you what will likely happen based on the experiences of other people with the same condition.

This information about what's likely or probable is the prognosis. The study was designed to ask 80 people in three different hospital ICUs who were the decision makers for critically ill incapacitated patients. They were given a questionnaire with 16 hypothetical statements about prognosis that were unrelated to their loved one's situations.

Questions like, if a doctor says he has a 90% chance of surviving, what does that mean to you? Or, if a doctor says it's very unlikely he will survive, what does that mean to you? The respondents were asked to mark their responses on a scale indicating the chance of survival by percentage from will not survive or a zero chance of survival to will survive a hundred percent chance of survival. Now, you've probably heard stories about healthcare practitioners subjecting very sick elders to aggressive care, but the reverse situation also applies. Healthcare practitioners may explain that further interventions are futile, that patients won't recover, while families push for every possible treatment.

Why does that happen? The assumption has been miscommunication. Either the durable power of attorney was not told, or they were told, but they didn't understand. It's a reasonable sounding explanation.

Healthcare practitioners do speak a different language from families who may also be distraught in the midst of a medical crisis. If the information were given more clearly, would the durable power of attorney comprehend it? The outcomes of this study show that's not the full story by a long shot. The 80 people who took part in this experiment were all in the middle of making decisions for incapacitated patients, either as appointed healthcare proxies or as next of kin.

There's something important about the heightened emotional state people experience when someone is in the ICU. Their interpretations of what hypothetical doctors were saying about hypothetical patients proved to be reasonably correct, as long as the prognosis were encouraging. 60% responded accurately to a statement predicting a 90% chance of surviving, and only 26% answered more optimistically than was warranted.

But the poorer the prognosis, the more inaccurate and more optimistic the surrogate's responses became. Only 22% correctly interpreted a statement about what a 5% chance of surviving meant, while 65% answered with greater optimism. Now people understood the meaning of the statements and the numbers because they were accurate about the positive statements.

But when they interpreted the poor prognosis, they just didn't accept or believe them. They displayed what's called a systematic optimism bias. Such bias has shown up many times before in medical literature.

Cancer patients enrolled in early phases of clinical trials, for instance, told interviewers that they understood the uncertainties of such research, yet stated decidedly over-optimistic expectations of personal therapeutic benefit. Now remember, the purpose of such trials isn't to cure individuals, but to test how new drugs or procedures work. A majority of American adults in a different study said they believed that divine intervention could save someone's life, even when doctors say further treatment is futile.

When interviewers asked a subset of 15 surrogates to explain their reasoning, certain themes emerge. The surrogates invoke the Lake Wobegon effect. Those prognosis might be right for some people, but not their relative who had some exceptional quality that would allow them to triumph.

Some were skeptical about the physician's predictions, yet they weren't skeptical of the doctor's hopeful prognoses, just the bleak ones. Other surrogates just needed to hold on to hope to get through the day. These are psychological processes, not communication errors.

However, such biases may have unhappy consequences for those relatives in the ICU. We know that many individuals don't want to be kept alive on life support if they have no chance of a meaningful recovery. If family members bring great optimism to their decision making, they may go against the patient's values, wishes, and advance directives.

Now we are constantly talking about how crucial advance directives are to have your wishes known, but findings like these point out that having legal documents in place doesn't mean that families will do as asked at the end of your life. Which brings me to another point I talk about with great regularity. Who you choose to be your durable power of attorney is very important.

Asking a child or spouse to be your decision maker may result in them making decisions to keep you alive despite your expressed wishes not to, and despite anything the healthcare practitioner is saying. Having a proxy is more important than who that proxy is. You want to choose someone who is trustworthy, competent, willing, aligned, and understanding of your values.

So when choosing your durable power of attorney, look for someone who is clear about your values, willing to advocate for what's important to you, emotionally stable, has good communication skills, is available to do the job, willing to learn, and rather than someone who is your next of kin. Being biologically related doesn't make someone the best or the most objective decision maker. Think carefully about asking a healthcare savvy friend or other relative to be your decision maker so that there can be less emotion tied to the decision and ultimately less guilt for your children.

This podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording. Hello and welcome to Everyone Dies, the podcast where we talk about serious illness, dying, death, and bereavement.

I'm Marianne Natso, a nurse practitioner and I use my experience from working as a nurse for 45 years to help answer your questions about what happens at the end of life. And I'm Charlie Navarette, an actor in New York City and here to offer an every person viewpoint to our podcast. We are both here because we believe that the more you know, the better prepared you are when a crisis hits and you have to make difficult decisions.

So welcome to this week's show. Please relax, get yourself something supportive to drink, pie or some cake or chocolate bar. And thank you for spending the next hour with Charlie and me as we talk about preparing for death.

Like the BBC, we see our show as offering entertainment, enlightenment, and education and divided into three halves to address each of these goals. Our main topic is in the second half, so feel free to fast forward to that probability zone. In the first half, Charlie has a new installment to our series about forgotten obituaries and the recipe of the week.

In the second half, I'm going to talk about preparing for death and how doing so makes it so much easier for your family. Not that it's going to be easy, but it could make it easier. And in the third half, Charlie has an example of an original approach to advanced care planning.

So Charlie, what's new? Let's see here. Hmm. Well, the some of the cherry blossom trees have already sprung.

Way early and already beginning to die. And in Washington, speaking of death, the, you know, beautiful cherry tree festival and everything. How many? It's something like 150 of them are now gone because the water in the Potomac has risen so much.

I mean, the trees are not underwater, but basically the roots now have been saturated with water, so they're essentially dead. And why is the Potomac rising? Climate change. Really? Oh, yeah.

It's this new thing. CC for short. Climate change.

Well, you know, I live in Oklahoma and we just don't believe in that stuff here. Yes. So I've noticed.

Oh, you crazy kids. Yeah. So, so that, so that, you know, actually, you know, I don't know if I've mentioned this before, but I mean, lower Manhattan, think financial district is also sinking.

A lot of that is landfills over, you know, hundreds of years, right? Buildings are so heavy. If they are actually sinking. It's like the Venice of.

Yeah. Venice of America. You wish it would be the Venice of America.

Yeah. Well, no, it's a sinking too. Yeah.

Maybe it's all gone. It's all going. And when Charlie, the optimist is with us today.

Yes. And I'm optimistic because when the worst of it hits, you and I should be dead by then. So yeah.

I'm not worried about me and you, you and me. But, you know, our youngins, our grandchildren, youngins, et cetera, et cetera. You know, and that's what I read is part of why kids that are like our kids ages are not wanting babies.

They feel no. And I've even talked with, you know, kids and their friends and they feel no confidence in the future and they don't really want to bring a child into an unstable, uncertain future. I mean, good thing.

Good thing. Our parents never thought about that. They just, they just popped them out.

Yeah. Yeah. They didn't think about it.

It was a simpler time in its own small way. It was a simpler time. It was a different time.

So for our first tap overlooked is a series of obituaries about remarkable people whose deaths beginning in 1851 went unreported in the New York times. This week's overlooked that is Miss Cordell Jackson, a pioneering record label owner and engineer who played guitar in a raw and unapologetically abrasive way. Whatever song it was, she said, I always creamed it.

Her long and mostly obscure musical career intersected briefly with American pop culture in the early 1990s coinciding with her appearance in a popular beer commercial. A grandma resplendent in a shiny ball gown and bouffant peering through her old lady glasses while ferociously rocking out, rocking out on a cherry red electric guitar and cracked up to 10. By then she had been making music for more than half a century.

She was born on July 15, 1923 in Pawtuck, Mississippi, a small city once known as a hideout for Jesse James gang of outlaws in the 1800s. She took an early interest in music making, learning to play banjo, piano, upright bass, and harmonica. By age 12 she was sitting in her father's string band, the Pawtuck Ridge Runners.

When I picked up the guitar, I could see it in her eyes. Little girls don't play guitar, she later recalled. I looked right at him and said, I do.

Miss Jackson always claimed that she had been rocking out well before the men who would make rock and roll famous. If what I'm doing now is rock and roll or rockabilly or whatever, she told the newspaper, the Tulsa World in 1992, then I was doing it when Elvis was a one-year-old. That's just a fact.

In 1943 she married William Jackson, moved to Memphis and began trying to scratch her way into the male-dominated music scene. She eventually befriended and recorded demos with producer Sam Phillips, who would go on to start Sun Records. She grew impatient with Phillips, who saw her gender as an obstacle.

So she created Moon Records, becoming one of the first women in America to record and produce their own music, some say the first, and securing her place in history. Cordell was immune to being told no, said country singer and songwriter Laura Cantrell. That was not typical for a woman, especially in the South.

Recording sessions for Moon Records were held in Jackson's living room, where she engineered, produced, and released music by regional artists. Some of her own performances included 1958's Rock and Roll Christmas and Bebopper's Christmas, but neither she nor her artists hit the big time. The 1960s and 70s saw her roving through a series of other kinds of work at a printing company, as an interior decorator with a real estate agency, as a DJ on the all-female Memphis station WHER, and running a junk shop.

It wasn't until the early 1980s, when she crossed paths with the musician, performance artist, and filmmaker Tav Falco, that things changed for her. They met at a Western Sizzlin' Steakhouse in Memphis, at a benefit. Do you remember those, Marianne? Yeah.

Absolutely. I love those. Absolutely.

My great aunt would always call and say, these cookies. Yes. Very fond memories with those.

Every guitar player in Memphis was there, Falco said in a video interview. That included Jackson, who approached him after hearing his band cover one of her originals, Dateless Night. The two became fast friends.

He invited her to appear on Bills with him and his band, and she accepted, despite the fact that, at almost 60, it was her first professional live gig. This was the beginning of the second act of Jackson's musical career, as she became, among a certain set, an elder stateswoman of grungy thrash guitar. She headlined at colorful, now-vanished rock clubs in New York City, like DBGB, the Lone Star, and the Lakeside Lounge, as well as at Max's in Hoboken, New Jersey.

She mostly played solo, but occasionally, local musicians backed her up. There were no rehearsals, just, let's go. That's like us.

Yes. Offstage, Jackson was down-to-earth, but proper, and deeply religious. She did not curse, and she did not drink, quote, anything but milk or water, he told Rocktober Magazine in 1993.

In an interview, she said that whenever she traveled, always in her yellow Cadillac, she disliked planes, it was with her own steak, her own milk, and giant jugs of tap water from Memphis, because she didn't trust any other kind. There was an unbridled ferocity to Jackson's playing, almost as though she were fighting with her guitar to give her what she wanted in an urgent, raw, and unapologetically abrasive way. Jackson didn't just break guitar strings, she broke picks.

I've never been confused about what I was supposed to do while I was down here, she said in 1999. If I think of it, I do it. Ms. Jackson died of pancreatic cancer on October 14, 2004, in Memphis.

She was 81. There we are, Marianne. You know, I watched the video of her, and she's like Minnie Pearl with a guitar.

Remember Minnie Pearl? I remember, and actually, I think she out-Minnie Pearled Minnie Pearl. Yeah, she was, wow, what a great name. And so, with our recipe this week, it is for Lemon Cloud Cookies.

Just imagine hanging around in heaven on a lemon cloud. What a great treat for your next funeral lunch. These lemon cookies have a bright lemony flavor and a super soft and cakey, in a good way, texture.

Thanks to the addition of sour cream in the dough. Bon Ami! Oh, no, wait a minute, hang on a second. Bon Appetit! Still gotta work on your Julia Child.

I know. Please go to our webpage for this week's recipe for Lemon Cloud Cookies, and additional resources for this program. Your tax-deductible donations are always welcome, so that we can continue to offer you quality programming.

Thank you in advance for making your donation at www.everyonedies.org. That's every, the number one, dies, dot org. Marianne? Thanks, Charlie. I read a wonderful article in the New York Times by a daughter, Shana Feiberg, and illustrated by her mother, Julia Rothman, that was titled, I Asked My Mom If She Was Prepared to Die.

Did you see the article? Yes, I did. Terrific. Wonderful.

So, her mom answered the question in this way. She said, not really, but I am prepared with my paperwork. I gotta tell you, I just had to laugh.

First, because the people say they're prepared to die, the experience no one truly is. And how can we be? It's like being strapped into the largest roller coaster in the world, and being asked if you're ready to ride. Well, yes, and no, but the ride is starting anyway, and it's too late to get off.

So, you can white knuckle it and scream, or raise your arms over your head and enjoy yourself. But either way, you're taking the ride. It's the unknown of it all that leaves us with that feeling of waffling about being ready.

For people who are sick, there are days when they'll tell you that they are just over it all. They're tired and they're ready to move on. I was at my sister's last chemo treatment, which turned out to be the day before she took an irrevocable turn for the worse.

And she said, you know, if it weren't for this cancer, I'd feel pretty good. You know, I laughed then too. Yep, that pesky, metastatic cancer really gets in the way of health.

She was unable to swallow anything at this point. But on the way home from chemo, we stopped to get a White Castle hamburger. She chewed hers and spit it out into a napkin so that she could at least taste it.

And then she told me, food is overrated. Well, maybe, but not White Castles. So, was she prepared to die? Not at all.

The advance directive I had brought to her sat in her sewing basket, not completed. There was a major ruckus with our mother after she died, because she had told her husband she wanted to be cremated. Despite the rule change, my mother still thought it was illegal for Catholics to be cremated.

It just set off a huge mess that really could have been avoided. But even having end-stage metastatic cancer, some people do not want to do their paperwork. Some people feel that filling out an advance directive will mean that all the plugs will be pulled because there seems to be a lack of trust that when mixed with a fear of death, results in avoidance.

A 2022 survey by life insurance providers documented that Americans would rather talk about money, sex, and politics than death. While they're thinking about it more, Americans still don't want to talk about it. When asked to rank their willingness to talk about traditionally taboo topics, 81% of Americans chose money, followed by mental health, 58%.

Sex, 46%, politics, 42%, religion, 41%, and death was last, at 32%. Only about one-third of Americans have completed their advance directives, despite the fact that advanced care planning enables people to make informed health care decisions, supports the delivery of high-quality care, and a more effective utilization of health care services. Studies have also shown that advanced care planning improves quality of care and patient outcomes.

Still not enough good reasons to do your own advance care planning? How about 14 more that are supported by scientific research? One, they enable health care professionals to conduct structured, meaningful conversations with patients about their wishes and preferences regarding treatment goals, preferences, and location of care. Two, they promote patient-centered care by focusing on the patient's personal preferences about their medical care and treatments. Three, it helps ensure that patients receive the care that is consistent with their preferences.

Four, raises the likelihood that health care providers and families understand and comply with the patient's preferences for medical care when the patient lacks decision-making capacity. Five, it increases the probability that patients with life-living illnesses can die in their preferred place, such as home. Six, it allows health care professionals and caregivers to proactively arrange for patients near the end of life to remain at home, in a nursing home, or in a hospice facility, rather than going to the hospital.

Remember, every time you go to the hospital, they're going to want to do stuff, and if that's not what you want, then you don't go to the hospital. Seven, it reduces the decisional burden on families as to whether they're making decisions that are consistent with the preferences of a loved one. There's nothing worse than seeing a family saying, I don't know what I'm supposed to do now, I don't know what she would have wanted, and then feeling that no matter what decision they make, they're going to feel guilty about it for the rest of their life.

Eight, it improves the bereavement experience of families by reducing stress, anxiety, and depression after a loved one's death. I mean, if you know that you're doing what it is that mom and dad wanted, then your grieving process will be so much easier, as opposed to feeling like, oh my god, I killed my mom. Nine, it enhances the family satisfaction with end-of-life care and understanding of what to expect during a loved one's dying process.

You know, we read, I've said this before, we read what to expect when you're expecting, so that you know what to expect when you're going to have a baby. But we don't want to educate ourselves about what to expect during the dying process. And even though we know, and we're probably preaching to the choir, because you're listening to this, we know people really don't want to learn more about it, or if they do want to learn more about it, they say, oh, well, I really don't know how to learn more.

But we're here, so you can. Ten, it positively impacts quality of life and end-of-life care by preventing unwanted hospitalizations and increases the utilization of palliative and hospice services. Remember, palliative care is pain and symptom management for anybody who has life-limiting or life-threatening illnesses.

You don't have to be dying, you don't have to be in hospice in order to get palliative care. Hospice care is for the last six months of life. Eleven, it diminishes the use of aggressive or intensive treatments at the end of life and reduces the number or length of hospital admissions.

So if you don't want to die in an ICU with a tube down your throat on a ventilator, then do your advanced directives so that they know we're not going to resuscitate this person, we're not going to intubate this person, we're not going to do these extraordinarily technological and painful things to allow people to die at home or wherever it is that they wish. Well, it decreases in-hospital and intensive care unit deaths, right? If you say, I don't want this stuff, then you're not going to die in the ICU. Thirteen, it reduces the cost of end-of-life care without increasing mortality, meaning we can spend less money, but you're not going to die quicker.

In fact, people who go to hospices, there are studies that show this, will symptoms get under control, they're sleeping better, and they live longer and more comfortably and have a better quality of life and time with their families. And lastly, 14, improves end-of-life care for individuals with dementia by allowing them to express their care preferences before cognitive function deteriorates to the point that they're unable to make their own medical decisions. Now, not talking about death is not going to make it go away, and talking about death is not going to make it happen.

Forms for wills and advance directives are available online. You can go to a lawyer and have them fill out everything you need. It hurts less than a root canal, and once it's done, you'll likely feel some great sense of relief that it's over, an accomplishment that you did something you really didn't want to do.

There are plenty of resources available to help people to do the advance directive or advance care planning. The paperwork is straightforward, advance directives no longer need to be notarized. You don't even have to leave your house to do that.

Planning what you want to have happen to your body has a wide range of options. I've had so many people tell me that their family knows what to do, when in fact the family has no idea what to do because they've never talked about it. Honestly, make it easy on your loved ones.

Pre-plan, pre-pay, put it all in a file, and tell like three people where the file is, because people are forgetful, and out of those three, one should be able to find it. Then there's all your stuff. We have podcasts about all these topics, including what to do with stuff.

Your kids really don't want your stuff. If there's something that they want, consider giving it to them now. I've started to do that, and it feels good to see them enjoy it rather than wonder if it's all going to end up in a dumpster, which I've seen happen, so be warned.

I've been a nurse a long time. I worked in hospice, at a cancer center, at different hospitals. I've had to deal with so many families totally adrift and surprised by the situation that they find themselves in.

Having a loved one terminally ill and die takes about all the emotional bandwidth that we have, and then on top of that, because we refuse to, didn't want to, didn't have time to, or anything else we happen to tell ourselves. Our family is now expected to survive. It's often devastating, and as a family, dealing with our emotional reaction through thousands of details about our lives that we've not attended to.

Sure, let's dump all of that on them while they're grieving and upset about our loss. Perhaps their being angry with us for our lack of planning will give them something else to think about rather than the fact that they no longer have us in their lives. Now, life is hard.

Loss is hard. Grief is hard. A final gift we can offer those who love us is to have our paperwork in order so they do not have to expend their energy on these details.

Be the person that has things organized so that you can awe your family with how much hard work you are willing to do to make their lives a bit easier. Don't give them a reason to curse you. Do the difficult thing.

Just do it. Carly, thoughts? One or two. Yeah, to your point, you know, figure out what you want, what you want, you know, what you want for the end of your life.

And then, for Pete's sake, let people know. And, you know, you brought up the proxy. In some parts of the country, it's POA, power of attorney.

Thank you, jeez. Power of attorney over a person. It's the same thing, a health care proxy.

Please make sure when you have set in your mind what you want, how you want to die, you have that advocate, that person who is your power of attorney, who is your health care proxy, who will follow through, who will not allow family members to try to change your mind, who maybe will run into doctors or nurses who say, oh, no, no, no, no, no, it's not time yet. I can do something. We can intubate the person.

While the person made it very clear they want no intubation. It's that please have that person who will speak for you when you can't. That's my biggest thing.

And, of course, everything Marianne said about those documents. Please get those documents. Every state, there is not one national health care proxy.

So just Google it for your state. I mean, search for it for your state. Your state's documents for living will, health care proxy, et cetera.

Marianne, is there a way you bring this up to people? I bring it up all the time. Yeah, I do, too. Yeah.

And that's where people will say, oh, my family knows what to do. And I'll say, well, how did they go? Oh, well, they just know me. Yeah, I don't even ask how did they know? I ask, oh, great.

What is it? And literally about 50% of the time, they do not have an answer. Or, oh, well, I mean, I'm thinking about it. It's just little things like that.

And I love meeting new people because I always, you know, I'll go with, so what do you do? Well, let's see. You know, I do some acting. I teach English as a second language.

I do editing. I take a beat. And I have a podcast I co-host called Everyone Dies.

That gets people's attention. And it's everything from, oh, my God, that's so morbid. That's gross.

Well, how is you determining how you want to die gross? And the conversations begin. But it's and yeah, I mean, supposedly liberal New York City, people do not want to discuss this. I don't think it's too bad.

I don't think it's about politics. I think it's about just our own. Oh, no, when I say liberal, I'm not talking about politics.

Supposedly, you know, anything goes here. It doesn't. But people still have that image.

I see. Yeah. Well, April 16th is National Health Care Decisions Day.

So that's a perfect time for people to join together and learn about advanced care planning and get her done, as we say here in Oklahoma. Let's get her done. Well, comedian said that there's a group of four of these guys.

I know they say it all the time here. Yeah, one of his catchphrases. I'm sorry, April 16th.

What is that day? Which would be a holiday? It's National Health Care Decisions Day. National Health Care Decisions Day. Decisions.

And, you know, it's not just Charlie who, you know, should be talking with friends and strangers about advanced directives. Let's let's all make everybody uncomfortable and bring it up. Yeah, I'm uncomfortable, but also the flip side, too.

Enlightened. Thank you. That's what I was looking for.

Yeah. Enlightened. Well, the thing is, is that they can be uncomfortable for a few minutes and learn something and maybe go and actually do it.

Or, yes, it could be really uncomfortable at the end of life, having interventions that they wouldn't have wanted if they had thought about it and dying in an ICU, which is, you know, not the best place to die. If you, you know, like if you know that you're really sick, I mean, if you've had an accident or something, well, then that's a good place to be. You know what you brought up about, you know, people prefer to die at home, and I understand that.

But but Marianne, but if someone is very sick. Or just can get better care in a hospital, I know I understand it would prefer to die at home, but is there ever in circumstances where it'd be better for the person to be in a hospital? I mean, to die in a hospital rather than home? Well, I mean, of course, there's probably situations where that's true. Sometimes people, you know, there's there's beliefs about it.

If you die in the home, then you've got to sell the house or burn it down or, you know, something that there's superstitions about that. Right. If somebody's having, yeah, so with pain management that, you know, needs like 24 hour monitoring and the family just can't do that.

Well, then that's that's a reason there's there's always possible possible reasons. But that's a whole other issue than saying I don't really know what they want. And so let's resuscitate them anyway, just in case.

And then they end up in the ICU. And then there's no other option after that, because once you're intubated in the ICU, that's, you know, if you're at the end of life, that's where you're going to die. So, you know.

Yeah, that's that's on mine. Absolutely no intubation at all. You've got like a line of friends willing to, you know, pull the plug for you.

So yes, you're all set. Life and death as it should be. But, you know, it's I say that, you know, tongue in cheek.

It's not about pulling the plug. It's about following what people want and having, you know, we live our lives, hopefully consistent in a way that we're true to ourselves and we should be able to die in the same way. Absolutely.

Yeah. Yes. For our third half, we have an original approach to advanced care planning.

Marianne, do we know who this is from? Yes, but I'm not saying. Very good. A friend of mine gave this to a bunch of us.

And if you if you knew this person, you would say, oh, my God, this is so consistent with the way they are. And so we decided to do this show. So this is a perfect sort of example of you don't have to get bogged in paperwork in order to express what you want.

Very good. Here we go. Over the past two weeks, my wife and I made several trips to visit her 83 year old father, who was in an ICU three hours away with pneumonia and sepsis.

Last week, after multiple family discussions, we all agreed to move him to a nursing facility on hospice where he died peacefully the next day. The day after that, my previously healthy 89 year old father fell in his backyard, hitting his head on a brick walk. A few hours later, he was on a ventilator again about a three hour drive from our home with a hematoma in his neck that was compressing his airway.

After 72 scary hours, he has been extubated and is doing well at present. When I got back home last night, I wrote this letter to my wife and two daughters. These instructions will not be right for everyone.

What would you change to make it work for you? Dear girls, with grandpa's death last week and my dad's current hospital stay, I am reminded that death is always near, so it seems proper to make what plans one can. As you know, I have talked about much of this before and filled out some forms, but here it is in more detail. If I am very ill and cannot communicate my wishes, 1. First make sure communication efforts are pursued with adequate energy and diligence.

Persons who are critically ill but who still have cognitive capacity and decision-making ability are sometimes not addressed directly, because it seems too difficult or uncertain to get through, or because of wishes, understandable but misguided, I think, to spare them the mental stress. One of my fears of being on a ventilator is not being able to convey my wishes, such as my nose itches, or my feet are cold, or make that machine stop beeping, or tell me my condition and prognosis as clearly and completely as you can. I'm pretty sure hearing someone say, it's not your time, or we're not going to let you go, would not be comforting or helpful to me.

I might be groggy or confused, so orienting statements, where I am, what day it is, how I got there, and repetition are useful. Number 2. Please make sure my comfort is aggressively optimized. 2a.

Ask me if I have pain and if I want something for that. If I do, ask the nurse to treat it. If there are barriers, be polite but persistent.

In most cases, can you please contact the physician? We'll get as quick a response as, I have a sharp object in my purse and I will use it, and is less likely to lead to subsequent complications and delays. 2b. I would like to listen to music of my liking.

Good choices for me include Beatles, Coldplay, TMBG, Elliott Smith, The Decembrists, Bach, and Beethoven. There's a playlist on my iPhone entitled, If I'm Sick. It's possible I would like some selections of E&W, Disco, or Hip-Hop, but why take a chance? 2c.

Please avoid or minimize the use of restraints. Occasionally, those are necessary to prevent a delirious patient from pulling out tubes, but they are potentially dangerous and antithetical to comfort. Even if required, they can generally be removed while someone is present who can ensure that the patient does not pull on the wrong thing.

If the nurse objects, be polite but persistent. Just in case, keep a sharp object in your purse. 3. Regarding the use of life-sustaining interventions, I want the same thing that most people want.

If a particular intervention is reasonably likely to help, use it, but not otherwise. Of course, there are two tricky parts to this expression. 3a.

Help! What does that mean? For this context, I defined it thus. Get me to a point where I can enjoy life and interact meaningfully with loved ones. I'm sure you recognize this is different from, keep me alive.

3b. Is reasonably likely to… This is not so much a problem of definition as it is a problem of determination. If you want something concrete, the default definition should be, provides at least a 10% chance of, adjust it as necessary.

For example, use a bigger number for a more burdensome intervention. In most cases, there is no consistent or agreed-on approach to deciding the likelihood of benefit from a particular procedure or medication or plan. Doctors make their estimates based on experience and personal worldview.

However, the situation is not as hopeless as this might suggest. If in doubt, it's often possible to give a time-limited trial, say 12 hours or 48 hours, depending on the predicted response trajectory, and then withdraw the intervention if there's no satisfactory response by the agreed-on deadline. I know it's not as simple as I presented, but this at least provides a strategy.

3c. Here's some additional guidance for specific situations. 1. If I have metastatic cancer, a large stroke, advancing dementia, or another condition with poor chance of survival, I want only comfort.

If I wake up, I can always contraband this instruction, then if I choose. 2. I want artificial nutrition and hydration only if they're reasonably likely to help. See above.

Or if they are required to optimize comfort, which is rarely the case. To be more specific, if I have been persistently unconscious for more than a week with little prospect of recovery, I do not want enteral or parenteral nutrition or hydration started or continued. This can be used as a guide for other situations that are similar to, but not exactly like this.

You know, this may seem a bit gruesome, but it actually feels liberating to me, and I hope it's not too discomforting for you. Let me know if you have any questions. Maybe next time I'll talk about my wishes regarding funeral plans.

I wonder if Father Patrick would allow fireworks in the nave? Love, Dad. What do you think of that? Hats off to, I assume it is a gentleman. Well, since it says Dad, sure.

Terrific. You know, take notes, folks. Whittle it down.

Little footnote thing. Little bullet points. This is terrific.

Exactly. Figure out what you want. Let people know.

You know, it's in his own words. He can sign it. He can attach it to the form.

But it's there, and they don't have to guess. They don't have to wonder. And I really, and I've said this to my, you know, to my siblings, and you know it too, Marianne.

Yeah, if you want to, if I, if you feel it's time to pull the plug, pull the plug. If you think, oh, wait a minute. There's a chance here, you know, Charlie has one foot in the grave, but the other one is in the banana peel, and he hasn't slipped yet.

Yeah, let's see what happens after one or two days. And I trust my siblings and you will realize, yeah, time to pull the plug. We gave it a couple of days.

Oh, here I have said it, folks. The shock heard around the world. Yeah.

The whole world knows now. Yes. It's just that.

Have somebody who's, you know, is not going to get freaky about it. Of course, there will be mixed emotions, but hey, you know, it's your death, and you'll die as you want to. Well, hopefully.

Hopefully, yeah, there we are. If you do this, you're planning you'll die as you want to. If you don't do it, you'll die as somebody else wants to.

And, you know, as far as we know, we die once, so, you know, you're not going to get a do over on that one. Kill me once and kill me twice. No, it doesn't really fit.

Kill me once and kill me twice, but, yeah, know what you want. That didn't stop you from singing it. No, it didn't.

And that's it for this week's episode. Please stay tuned for the continuing saga of Everyone Dies, and thank you for listening. This is Charlie Navarette, and in a greeting card from Trash Talk by Annie, you may be getting older, but you still have a lot to offer society.

Your organs, for instance. And I'm Marian Matzo, and we'll see you next week. Remember, every day is a gift.

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