#122 A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death – Diane Hullet

I recorded a few “bonus” episodes awhile back, and I’m just gonna leave it in the title, even though it’s not so relevant any more! Think of it as a bonus to the way we can think and reflect at the start of the new year. Listen in to hear my thoughts on why this book matters and how reflecting on the topic of death can change your life.

Transcript:

I’m Diane Hullett and you’re listening to bonus episode number two of the Best Life Best Death podcast. In this bonus episode, I thought I’d talk about a book that I haven’t mentioned a lot. I know I talk a lot about Being Mortal by Atul Gawande. I think that is just an exquisite overview of the challenges facing our society.

The challenges around healthcare, the challenges around medical choices, and the challenges around facing our mortality being mortal excellent book. I’ve also talked a lot about a book called the art of dying well by Katie Butler, and I love that book because it’s full of pragmatic information about different stages.

Things you might want to be thinking about depending on what stage of life, both age and health, you are at currently or heading towards or somebody that you love is in. Those are two of my favorites. But today I’m going to talk about a book called A Beginner’s Guide to the End, Practical Advice for Living Life And Facing Death by B.

J. Miller and Shoshana Berger. I was reminded of B. J. Miller recently because I was watching on Disney Plus a show that came out in December of 22, featuring Chris Hemsworth. And Chris Hemsworth, if you don’t know, he’s an actor, great big guy in his 30s, plays Thor, plays a, you know, kind of a mythological comic book hero in the movies.

And he and a producer got together and created a show called Limitless, in which Chris kind of tries to sort of biohack, like, what are the best ways to work with his body for the longest, strongest, most mentally active life? And so they talk about a variety of, of things. They talk about strength. They talk about the power of cold and temperature changes and saunas.

They talk about how our mind and what we tell ourselves has such a powerful influence and how, of course, our mind affects our physiology. And our physiology affects our mind. And we can go both ways. That episode is kind of an interesting one because he does a very terrifying to me walk up on the highest level of a building in downtown Sydney, Australia.

And he walks out on this thin beam. And when he first He trains for this for a few days or weeks, whatever it is. And when he first gets up on this beam, his heart rate spikes up way up like 160 as though he were working out. And his heart is simply pounding out of the fear of being up at this great height.

And of course he’s You know, he’s strapped in, he’s, he’s got cables and so on if he were to fall, but he doesn’t want to fall. And of course it’s from this great height that’s quite terrifying, but he is able to, by managing his breathing, actually slow his heart rate down. So again, this fascinating ability to, our mind can amp things up and our mind can slow things down.

So the final episode of Limitless. If you have a chance to watch it, is where Chris Hemsworth talks with B. J. Miller. He’s a doctor, very interesting person, and the author of this book that I’m going to talk about today. And in this episode, the final episode of Limitless, B. J. Miller talks about, you know, it sounds so simplistic to call it coping with adversity because Dr.

Miller’s story is that when he was a young man going to Stanford, very fit, very young. Handsome, and he was in a terrible accident where he and somebody’s climbed up on top of a light rail kind of train and he was electrocuted. He had a metal watch on his hand and the watch attracted the electricity and thousands and thousands of volts shot through him and he lost his.

Arm, I think it’s about from the elbow down and both legs from the knees down and he describes how he had to completely reinvent himself. He had to completely let go of the old B. J. Miller and embrace the reality of what his life was now. And he went on to become a physician specialized in palliative care, and he’s a very compelling author and, interviewer and person to listen to about end of life in these kinds of complicated medical fields that we get into. So I love that. He wrote this book a beginner’s guide to the end and. I love on the front of it is a quote from Abraham Verghese, who’s a physician and the author of Cutting for Stone.

And he writes, this is a book that every family should have the equivalent of Dr. Spock, but for this other phase of life. So when you open this book, there is this very accessible table of contents. And there’s also this really powerful quote that says, this is not life interrupted. This is life. And the table of contents contains planning ahead, dealing with illness, help along the way, when death is close, and after.

And each one of those sections has, you know, anywhere between four and kind of six mini chapters within it. So I wanted to read you a part of the beginning of this book. And I’m reading from page, if I can find it. Okay, this begins on page 12 of the introduction. Your goals of care. Only a small fraction of us, 10 to 20%, will die without warning.

The rest of us will have time to get to know what’s going to end our lives. As discomforting as that can be, it does afford us time to live with this knowledge, time to get used to it, and time to respond. We do have some choice about how we orient ourselves toward the inevitable. Where we’ll die, maybe.

Around whom. And most important How to spend time meanwhile. To make those choices manifest, you’ll need to be clear about your, quote, goals of care, a phrase borrowed from the field of palliative care that’s becoming increasingly common. By thinking through how you want the end of your life to look, you’ll find a useful way to face decisions that need to be made along the way.

Identifying your goals is more than simply making a list of priorities, it’s a process. It’s a process that helps you figure out what your priorities are while traversing aging or infirmity. That means listening to yourself, as well as to others, and communicating with those around you about how you feel and what you think.

It’s a sure way to land on decisions that you, and those around you, can live with. Your goals of care will follow from your answers to questions such as, What’s most important to you now? What can you live without? How much treatment do you want and what kind? Where do you want to be when you die? How do you hope to be remembered?

Your wishes also need to square with the practical realities of your situation, including logistics and costs. We are not suggesting that your goals are fixed, they will change over time as your life does, but if you can articulate them, they will become a compass. In this book, we move chronologically through the steps toward the end of life, but you may be on a different schedule, and that’s fine too.

We are not here to load you up with work. We’re here to help you navigate the work that’s coming. Use this material in whatever way fits for you. So I love that image that this is about finding a compass and it’s your compass. It’s not anybody else’s, but if you don’t begin to look at it and take in some knowledge about it, then We tend to just stick our head in the sands and hope for the best.

Sometimes that works out, but a lot of times, there’s a better way. I’m going to read one more piece from the book, which has to do with a chapter called Chapter 6. And Chapter 6 is, Now What? And this involves a time when maybe you’ve received a diagnosis, or things have gotten a little more precarious.

And I like this. They say, This is more a time for taking stock than for taking action. Who you are and what you want to do will bump up against circumstance and what’s physically possible. Look inward, but also outward. This is how to prepare for decisions you’ll need to make that affect treatment options and how you want to spend your time.

Whenever you find yourself at a crossroads, pause. And reflect. So I want to take both those two things, the idea that we can find a compass that helps to guide us and the idea that we can take time to pause and reflect. And that both of those aspects allow us to come into whatever is occurring in our lives with a bit more equanimity and a bit more information than we might’ve had before.

You know, Barbara Karnes just had a great blog post and as you probably well know, Barbara Karnes is one of my favorite end of life educators and a RN and one of the early people in hospice in our country. She was a nurse in the 1980s working as a hospice nurse. And Barbara has a blog called Something to Think About.

And in this week’s blog, she talks about, If I Were. And then she goes on to list several things. If I were a funeral home, if I were a hospice worker, if I were an attorney, a physician, a social worker, a nursing facility, and essentially in every single one of those, she says, if I were this thing, my goal would be to give people information.

For example, she says, If I were a physician, I would have end of life materials to give to my patients that were approaching the end of life, patients I was having a difficult time fixing. It is part of my healing skills to guide them through their last breath. If I were an employee of a doctor’s office, I would have in the reception area end of life information handouts as reading materials that anyone could pick up.

If I were a funeral home, I would give end of life education materials to all who are making pre arrangement funeral plans. It’s an opportunity to provide education in an area that will be needed someday. So, I share that just as yet another place that this idea that we can pick up education in a lot of places, and I think what we have to figure out is, what is our way of taking in information?

Do you like listening to podcasts, mine, others, there are so many good ones out there. Do you like reading books? If so, there are a plethora of books on end of life, and I’ve mentioned today just three that I think are really top notch. Do you prefer watching videos? There are some incredible TED Talks about end of life and taking stock of where you are and what you want.

This doesn’t have to be a morbid undertaking. This can be really empowering, insightful. Relaxing even because as you find out what’s true for you about what you want and what your compass is, it will help you make decisions and it will help your loved ones make decisions. And I think that’s really the goal.

The goal for me is how can this be, you know, this difficult time of somebody dying? How can it be less traumatic? Less filled with chaos, less filled with discrepancies and understanding of what somebody wanted, and more filled with time with the dying person, time with family and friends and loved ones, time for conversations and reflections.

And simply time to be together, perhaps even just quietly without having conversations ahead of time, without educating yourself, without having conversations with those around you. It’s just hard for that to go smoothly. And I think that’s my goal is to just encourage conversation. So this can all go more smoothly, however it goes down.

That’s bonus episode number two. I hope you enjoyed it. I’ll try to keep doing pieces that incorporate things you can watch. Things you can listen to, things you can read, because I think that all those modalities work in different ways for different people. So today I talked a little about Limitless, which is on Disney Plus, which is kind of a very interesting show.

I talked about the art of dying well and being mortal to classic books in the field. And I talked about A Beginner’s Guide to the End by B. J. Miller and Shoshana Berger, an excellent resource. Have a great day.

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.