20: What Goes Into A Living Will?

[00:00:00] Today's Topic: Your Living Will

If you've been listening to this podcast for any length of time, I expect that you've noticed that I don't get super emotional about a lot of this death and dying stuff. I mean, I feel a lot of things, but I'm good at compartmentalizing so that I can get through what needs to be done. Whether that's in my role as a caregiver or in my work, or just in general, I tend to be able to think through things and moderate my emotional response whenever it's needed.

That said, I found that when I was completing my own advanced directive, thinking through my own living will, it got really emotional. It was tough to think about my own dying, being incapacitated, the friends and family that might be impacted, and then to imagine me being gone out of the picture. Hard to think about, like, what decisions I would need to be making. It was a lot. 

So I wouldn't be surprised if doing the living will, the advanced directive, all of that stuff—I wouldn't be surprised if that's hard for you too. I mean, it's probably going to take much more than one conversation to actually fill out the forms. So if you started your own Death Binder and then got stuck, chances are pretty good that this is exactly where you got stuck. And I'd say: Give yourself a break. Don't try to tackle it all at once. Just keep moving through it, but know that you're not alone in finding this hard.

Today I'm going to try to help out a little bit by giving you some details and some things to think about that I hope will make this process easier. I'm even going to share some of my own examples from my living will in order to make all of this more concrete. So stick around because today we're talking about your living will.

[00:02:33] Welcome to Dying Kindness

[MUSIC]

Hello and welcome to Dying Kindness, the podcast for people who are going to die someday. I'm Cianna Stewart and I'm going to die someday. I've cared for people as they died and have supported grieving friends, both emotionally and practically. I've seen the impact that death has on the people left behind and how much worse that experience is when the grief is complicated by having to deal with a messy, legal, financial, or physical aftermath. I don't want to do that to the people I love when I eventually die. And I don't want you to either, because spoiler alert) you are going to die someday, too. So let's all do what we can to make key decisions now in order to be kinder to the people we'll leave behind. That's a dying kindness. 

[00:03:20] Promo: Death Binder Template

[MUSIC]

But before we get started, I need to tell you about the Death Binder. Throughout this podcast, I talk about a range of decisions and documents that I believe all of us need to complete before we die. These cover everything from what we want done with our bodies, to accessing our financial information, to how we manage our online profiles once we're gone, and a lot more. Making these decisions and writing them down is an act of kindness for our loved ones - but only if they can find the documents after we die. I recommend collecting them all in one place, what I call a Death Binder. It can be confusing or overwhelming to know where to start, so I've created a handy template that's broken down from what's most critical to what's simply helpful. To get access to the Death Binder template, go to DyingKindness.com. When you sign up for the template, you'll also get access to the Dying Kindness newsletter, where you'll get notified of workshops and other things to help you throughout the process of getting your affairs in order. Once again, that's DyingKindness.com. Thanks for being here and for caring enough about your people to plan ahead. Okay. Back to the show. 

[00:04:30] Personal Update & Thanks

So I'm recording this in my new office in downtown San Francisco. I am super excited to have my own space and I am in the process of setting it up (probably going to take a little while). My hope is that I can use this space to be able to set up systems so that I can be better about sending out newsletters and having office hours and running some workshops that you all have been asking for—which is really appreciated. I love that. Thank you so much. And I totally will get on it, but I have to finish moving and get some things set up first. It's just taking a little bit.

Super extra thanks to my Patreon supporters and to everyone who sent individual donations on Buy Me A Coffee. You give me such a boost, I can't even tell you. And this gives me the confidence to continue and basically just kind of do everything that I'm doing here. So: Thank you! It's so great. 

[00:05:42] Book Recommendations

I want to start including book recommendations in these episodes because I read a lot. Because, by way of reminder: I'm not a doctor or a lawyer or a death doula or anybody who's officially trained in the death stuff. And for today's episode, I relied on many, many resources and I would just want to highlight a few of the best ones, the top ones. 

First a big shout out to NOLO Press. I use them to do my own paperwork and they have a lot of resources, including forms for the living will and doing estate planning specific to every state, if you're in the United States. And even if you are going to be working with a lawyer, using the NOLO Press stuff can really help to get you prepped for that. 

I also love, love, love the book The Art of Dying Well, by Katy Butler. She writes so articulately about all the different stages from "you're doing just fine and you're very far away from, you know, thinking about your dying body," to, "now you have something that is going wrong or you've got a diagnosis or something," to, "now you're really needing some care and you need to consider like getting help or moving," to, "now you're in the end stages." And then there's also a section for caregivers. And just the way that she spells out all those different stages in such clear language, I can't recommend this book enough. It is so, so good. 

Another great book is A Beginner's Guide to the End, by BJ Miller and Shoshana Berger. BJ Miller is a palliative care doctor. And this book really is targeting people who maybe just got a recent diagnosis and their caregivers to know what to expect. It is both practical and encouraging and it breaks down so many things that you need to know, including, like, what to put in your bag if you need to go to the hospital. And especially if you're somebody who has gotten a diagnosis and needs to contemplate the stages of, you know, hospital care, hospice, palliative care, all of that in the foreseeable future, this may be something that can help you get through the brain fog and state of overwhelm when you're in that situation. 

I highly recommend that you get your own copies of these. Ideally you would support your local independent bookstore. I'm a fan of the indie bookstore. I think that they can help to define and anchor a neighborhood. So if you can, go brick and mortar. Go walk into a store. Order your copy of these books from them and just pick them up there. 

But I also know that a lot of people prefer online shopping, and if you want to make that easy and you also want to support the show at the same time that you are supporting indie bookstores, I have a bookshop at DyingKindness.com that uses bookshop.org. And so you can shop online just as conveniently as some of those big mega organizations that I'm just not going to talk about here. So if you go to DyingKindness.com and click on "bookstore," you can find a curated list of books that I've read and I recommend. And I'll get a little affiliate bonus and indie bookstores will get a little bonus and the authors will get paid and everybody's happy. And you have a book. So I'll put a link to all of that in the show notes. 

[00:09:35] Main Topic: What goes into a living will?

On to our main topic for today. What goes into a living will? A living will can be a standalone document, or it's just part of the official advance directive, including this section about who's your healthcare agent and some other details. Basically, the living will is a document that spells out your desires for how you'd be cared for throughout the dying process. It becomes a useful guide for your healthcare agent if you're ever in a situation of needing this kind of care but you can't speak for yourself. So it's like a guide and not a list of orders and I think that that is an important thing. I'll get into that a little bit more as we go through this. 

I'm not going to go into who needs a living will and when it kicks in, because I went through that in Episode 19 in detail. So if you're looking for that, go back to Episode 19, "Which forms? When?" And I talk about living wills, advanced directives, POLST, DNRs, all of that kind of stuff, and try to clear up some confusion about the different forms. 

I'm also not going to talk too much about the healthcare agent, because I did a whole episode on that one as well. And that is Episode 18, "Choosing Who Will Defend Your Wishes." So check that out. 

What I am going to talk about today is what goes into the living will itself. Every state and country lays these sections out in the advanced directive or living will a little bit differently in their own version. So, keep that in mind. You'll need to get the forms that are relevant to wherever it is that you live. But mostly they cover the same kinds of things with some details around that for legal or local guidance reasons, so I'm going to talk more generally. 

The process of filling the sections out, filling out your living will, it starts with you imagining yourself incapacitated and dying. I'm going to just pause for a second and let that settle, because it can be hard to imagine yourself incapacitated, dying, needing care in a hospital or at home or somewhere. It gets real, real fast. So I would just recognize that and, and I'll carry on. 

[00:12:14] Five year time horizon

One thing about being asked to imagine your own dying process is of course you don't have any idea when or how you're going to die, and that can make it really hard to imagine the kinds of things that you'd need to decide in order to be able to fill out your living will.

Something that makes it harder is if you're trying to cover all the bases and write it all down. And also if you're thinking about your death being super far away, because you are much, much older than you are right now. And so I would say, do your living will assuming that you might need it sometime in the next five years. That way you can use your health and your life circumstances as they are right now as your baseline. It's not really useful for you to imagine yourself, 30 or 50 years in the future. Like, who knows what your life will look like then? Your health? Your relationships? So do your living will for today and for the next five years. Hopefully that makes it a little bit easier. 

[00:13:16] End-of-Life Decisions

Whatever version of the form you'll be completing, it will include your instructions 

for healthcare. Most importantly, you need to get clear about some end of life decisions, like, what kind of life-prolonging treatments you want, or even if you want them at all. Like, do you want efforts to be made to prolong your life beyond a naturally occurring death? That term "naturally occurring death" is pretty vague. 

You'll want to include notes about different treatment options, things like, you know, transfusions of blood and blood products like platelets and stuff. Are you open to that? 

[00:13:58] CPR

Do you want CPR? And I go into CPR and that kind of stuff in the last episode. So take a listen because there's some specific things around the DNR and CPR, when your body is frail and elderly, that it's actually not a great idea at all, but if you're healthy and expected to recover, then it might be something that you do want. So think about that. 

[00:14:25] Diagnostic Tests

You should also include some things about whether or not you're open to having some diagnostic tests to try to figure out the next stages of care or treatment. Some of those are non-invasive and not necessarily a big deal, like x-rays. Some diagnostic tests are very invasive and include things like surgery. So you want to start getting a little bit more detailed as opposed to just saying, "Yes, do diagnostic tests," or, "No, don't do any diagnostic tests." 

[00:14:59] Dialysis

Another treatment option at the end of life is dialysis. One of the things that happens very commonly as the body starts to shut down is that the kidneys start to shut down. And so they're not cleaning your blood so well. And what do you want done at that point? Do you want to just let your body continue or do you want to actually be on dialysis as part of your end of life care? I'm not going to go too much into dialysis right now, but just know that it is a pretty intense procedure and the considerations around whether or not you want to use it can be very, very different if your body is otherwise generally healthy, or if your body is otherwise dying or frail. 

[00:15:45] Drugs, Antibiotics

You'll also want to include some things about different drugs as treatment options. Most common (and also often very controversial) is the decision to use antibiotics, especially in the treatment of pneumonia in the dying. And that can actually be something that ends up becoming really harsh on your body and may or may not be something that you'd want in the last stages. Some people do want to include them because they feel they want to be kept alive by any means necessary. And there are other people who decide that they don't want antibiotics because they welcome the pneumonia or whatever else as part of a naturally occurring death. And so it's something that's extremely personal, but it would be really helpful to your people if you actually spell that out, because it is a very, very common and difficult decision. 

[00:16:47] Respirator, Surgeries

Other things you might want to include here are talking about whether or not you want to go onto a respirator. And whether or not you're open to surgery that can save your life. Like some things that are really common in surgery are if you have diabetes and some of your extremities are starting to blacken, and they're worried about sepsis into your system. Would you be willing to have an amputation if it has the possibility of saving your life? But some people are open to that and some people are not, how do you help your people make that decision on your behalf? That's the kind of thing you want to include in there. 

[00:17:29] Pain Relief

Another thing to get specific on of course, is how do you feel about different kinds of pain, relief, drugs, and thinking through the ways in which you do or don't want to experience what you're experiencing and whether or not you're willing to sacrifice a certain level of awareness of your surroundings and the people around you if it will help you feel less pain. Again, a very personal decision. Some people want to just be there for it and are very willing to suffer (or at least project and imagine that in the future, whenever they need it, they will be willing to do that). Meanwhile, some other people are like, "Nope! I don't want to feel any pain. I would like you to do what you need to so that I can be peaceful and pain-free." And there's all kinds of gradations in between, from "absolutely I want to feel everything" to "I don't want to feel anything." There's a lot of gradations, so give some guidance on how to think about that. 

[00:18:28] Conditions: Coma, Alzheimer's, Brain Disease

Another thing you can put into your living will, which is super useful, is to give some notes on specific situations, like what if you're in a permanent coma? What if you have Alzheimer's or have some other progressive or permanent brain disease? In those situations where you're not expected to recover back to your previous faculties, it's can be really hard for someone to make key decisions about what you would want if you didn't specify it in advance. So think about it and then write out some guidance. 

[00:19:06] What makes life worth it to you?

The kind of guidance that you can do is to include in your living will some stuff about what you think makes life worth it for you, and what makes it not worth it. And that will help people know whether or not they should make an effort to extend your life based on what you say makes it worth it. Like, are you asking to be kept at home so that you can die at home no matter what, even if that means that you'd have to forego certain kinds of treatment? Like, is it preferable to you to stay at home as opposed to going to a hospital to get these kinds of treatments, even if that means that you may not be living quite as long? 

Some people include that what makes life worth living for them is the ability to recognize their children or their grandchildren, and to meaningfully contribute to their lives. And if you're not able to do that, and you're not expected to recover the ability to do that, then that kicks in this whole other series of things that, you know, you don't want your life to be extended any more beyond that. 

For some people, they prioritize the ability to walk, or to talk, or to see, or to hear, or to do some kind of activity. Are those things, things that you feel are life defining to you? That you're– that they are the things that give your life purpose and meaning so that if you did not have them, then you would not be interested in extending your life? Or are they things that you think, "Oh, I can actually still see a purpose and, and a reason for living, even if those things were to go away."

[00:21:01] Hospital preference

On a more practical level, you might also just want to include if you have a hospital preference or some kind of type of hospital. If you do or don't want to be brought to a Catholic hospital, for example. Those are the sorts of things that you also want to include in here. 

[00:21:15] Religious Preference

You should also include some stuff about your religious preferences. Not just about if you have a specific person, or pastor, or minister, rabbi, or imam, or whatever, that you want called, but just in general. Like, some guidelines around how much or little religion or spiritual activity do you want anywhere around you? 

[00:21:38] Adding Additional Notes

The living will can be a pretty informal document, but even if you use an official advanced care directive kind of form, they have a section that's like "Additional Notes" at the end. And you can also attach something to your advanced directive that specifies other things. And in these, you can put in your non-standard requests, like personal preferences. That will help people to understand how to make you feel better or how to give you comfort or how to give you joy even if you can't communicate. 

[00:22:10] Music

You know, when I read notes from deathbeds and from hospices and stuff like that, there's a lot about how people can still hear for a long time, and that is the last sense to go. So you might want to include notes about the music that you love—or maybe the music that you hate that you never want to hear anywhere around you.

[00:22:33] Political Causes

Shout out to Kathleen Hunt, the estate lawyer that I interviewed way back when. She introduced me to the idea of being able to include notes about political things in your living will. That can be very, very important, especially if you're somebody who has strong political convictions. Are there things that you want included in your living will, especially if however way you eventually die might actually have some impact on political causes that you championed while you were alive? 

[00:23:07] Artificial Food and Water

And then the last note, which is really hard for people to think about is artificial food and water. Oftentimes when we're dying, there's a point at which your throat muscles are starting to give out. You can't really drink any more. You can't really eat any more. You may just, in general, not be hungry. And that's the body starting to shut down. In those situations, do you want artificial food or water to be administered? Once again, this is a situation where some people say, "Yes, I do want that, even if it's a tube or surgery or whatever's involved so that I can stay alive as long as possible." And other people are like, "Nope, I don't want the surgery." So, all of this stuff (and I’m going to keep saying it) it's really, really personal. There's no right answer. There's no wrong answer. What is wrong is to not answer and to not give any guidance to anybody, because that's basically just pushing off the decision on somebody else. And they're not in your body. And they love you. And they want to do right by you. So give them a hand. Make a decision. 

[00:24:17] Have conversations

So I'm sure you're gathering that this is not just paperwork. It should really be a conversation with your family members, with whoever it is that's going to be your healthcare agent. And you can even just get practice by talking about it with friends. You know, these are not yes or no answers. We're generally talking about really complex situations that are rarely about only one choice, if they're ever about only one choice. Just about every decision has some kind of consideration or could have a domino effect on some other decision down the way. And we can't predict every situation. The most important thing is to communicate your values and to give people ways to think through these complex situations, because you can't predict everything, you don't know how or when, or even where you're going to do.

So, like I said, it's a, it's a guide to how to think through all of this. And don't try to do this in one conversation. It's big. It can be really complex. I recommend using tools like The Death Deck or the guides from The Conversation Project. You can go back to Episode 14, "Getting the Conversation Started," to learn more about those tools and resources.

[00:25:36] Benefits to your life right now

You know, filling these forms out can actually bring you closer to the people that you love. And it can maybe even clarify how you want to live your life right now. Like if there are things that you're concerned with that you think may not be in place for you whenever it is that you die, then maybe now is the time to start investing in those relationships, or in your health, or in your finances, or in whatever it is that you are concerned about. Try to get ahead of that and use your concerns as a guide for making changes now, while you're still alive. And I know also that it can be scary to think about this stuff and hopefully that, uh, talking about it can also reduce some of that fear because you can make it a little less charged. And, you know, in general, talking about taboo topics can ultimately be pretty cathartic. It can be, you know, something that helps you move past that fear and feel like you've got a little bit more control. 

[00:26:42] My living will: examples

Overall your goal in writing your living will should be to help your people to be able to make decisions when the choices aren't clear cut or they're unexpected. Obviously the starting point is thinking about what you do and don't like.

For me, I've been through a lot as a caregiver and as a witness to the experience of others in this situation and not all of that has been good. So I'm including some things in my living will, my advanced directive, that are about taking care of the people around me. It's really a further extension of the focus on kindness that I'm advocating throughout this entire podcast.

What do I mean by that? Here's some examples from my living will. If you want to use these to guide your own, they'll be in the transcript for this episode.

• My overall goal for care would be to support quality of life over quantity of life. I have an additional goal of making choices which do not cause undue stress or hardship for my loved ones.

• I request that choices about the location of my care be made with consideration for the needs of my caregivers, supporting their ability to take breaks. I do not wish to cause more stress on their lives than they are willing and able to take on.

• I prefer the ability to communicate over being 100% pain-free or utilizing artificial feeding or breathing tubes if there is no reasonable hope for recovery.

• I request that you optimize my environment for tranquility, conversation, and laughter.

• Please keep my environment free from network television and other forms of media with intrusive advertising.

• I welcome the scents from essential oils and fresh flowers, with the exception of freesia and paperwhite narcissus flowers, because they give me an instant headache.

• Unless it increases my pain or otherwise clearly causes me distress, I welcome physical touch. In particular, massaging my head, neck, shoulders, back, and hands has always given me comfort.

• Please don't leave the burden of my care on the shoulders of just one or two people. 

• If relevant, I do not want the circumstances surrounding my death to be used politically to support the death penalty or as an argument against gun control.

• I prefer environmentally conscious options whenever relevant and possible.

• If relevant, I do hope that people affected by my death will work towards reconciliation and forgiveness.

• I prefer to be told my prognosis. I want to know what is happening and what to expect. Please be direct, clear, and frank, using plain language. If I am actively dying, please tell me so.

[00:30:19] Wrap up: Don't do this alone

You get the idea. As you can see, not everything is about healthcare treatment options. Dying can sometimes be a long process with many twists. It can involve many people and because it can take a long time. It can include all kinds of decisions from medical to social, to economic, to everything. Thinking through these decisions can be tough and it can be confusing. Get input from your doctor, your family, your lawyer, your hospice team, your friends. Read books. Join groups, like the Dying Kindness Facebook Group. There are so many resources out there, but number one: Don't just read about it. Talk about it. And talk about it more than once.

[00:31:14] Credits

[MUSIC]

That's it for today. For the show notes, transcript, related books, ways to support the show, and more: Go to DyingKindness.com. The theme music is by Blue Dot Sessions. Everything else was done by me. I'm Cianna Stewart and I'm going to die someday, but hopefully not before I finish reading the books that are currently on my nightstand.

[MUSIC ENDS]

[00:31:41] Today's Death Reading

Today's death reading is "Requiem" by Christina Rosetti* from Death Poems edited by Russ Kick.

[BELL]

When I am dead, my dearest, 

Sing no sad songs for me; 

Plant thou no roses at my head,

Nor shady cypress tree: 

Be the green grass above me 

With showers and dewdrops wet; 

And if thou wilt, remember, 

And if thou wilt, forget. 

I shall not see the shadows, 

I shall not feel the rain; 

I shall not hear the nightingale 

Sing on as if in pain:

And dreaming through the twilight

That death not rise nor set,

Haply, I may remember,

And haply may forget.

[BELL]

*This is a correction. I mistakenly said “Christina Rossi” in the recording.