Nothing like talking to an expert in the field to clarify what truly matters! Sue Mackey has been working for more than 15 years to help people prepare for the end of life. We talk about critical pieces of the puzzle, such as: What is a healthcare proxy? Is that the same thing as a durable medical power of attorney? And why are there so many terms that mean the same thing anyway? (Spoiler: There is no way to actually answer this, at least not in 30 minutes.) Sue and I talk about what gets in the way of getting the paperwork we know we need to do completed, but ultimately, as Sue says, “Paperwork is the surface work – first you’ve got to take a look at your own mortality!” Only then will you find yourself signing what needs to be signed.
https://www.outoftheboxendoflifeplanning.com
facebook.com/OutoftheBoxFuneralPlanning
Diane Hullet: Hi, I’m Dianne Hullet. Welcome to the Best Life, Best Death podcast. Today I’m talking to a local friend and colleague, but she’s actually far away in a tropical vacation right now. So it’s fun to see her background, which is these beautiful green trees and vines. So welcome to Sue Mackey. It’s nice to be here.
Sue is an end of life educator, long time end of life educator. And I’m really looking forward to this conversation because her work is called out of the box end of life planning. And I think, I love the phrase out of the box. I think that what you do is really important and it’s, it’s sort of both in the box and out of the box and you help people get things done.
So I’m sure you’ve answered this question a thousand times, but how did you get into this work? How long have you been doing it?
Sue Mackey: I’ve been doing the work in different forms for about 15 years or so, and it’s really just something that got pulled from me. It’s, it’s, I wasn’t a little kid who loved to bury birds and do deathy things as a child, but I found in my adult years that like when both, each of my grandmothers were dying, I was comfortable in the room where everyone else was uncomfortable.
And it led me to a program at Naropa about 18 years ago. On Contemplative End of Life Care, and I’ve just been exploring ever since and growing the work, growing the work around what people were asking of me. And so that eventually evolved into this exit planning full on. How to get your back together, your stuff pulled together.
Diane Hullet: Yeah. Because I think, I think that’s so interesting that you felt like it was pulled out of you. That’s kind of the sense I had too. It’s like, I’ve always just sort of been like, well, I’m comfortable with this, but wait a minute, other people aren’t comfortable with this. And then when we have that degree of comfort, it’s almost like we can lend that to families and they can kind of lean in and someone we can talk to about this in a, in kind of a different way.
You know, so many people, I think, walk around with this feeling like, Oh, I’ve got to do something. I should do something. I know this kind of end of life planning is important, but I just don’t get to it. What, you know, in the big picture, like, why is this? paperwork and this thinking and this planning, why does it matter?
Sue Mackey: It matters if you care about the ones that you’re leaving behind. And there are those who are fine with just saying, Hey, my kids will figure it out. But that leaves them having to guess that leaves them in a quandary that leaves them often arguing about what say mom would want. And it also eliminates, can potentially eliminate the possibility of you getting what it is you would actually want.
So by communicating ahead of time, The family will know what it is that you are desiring as far as your treatment at the end of life. Most of us are trying to avoid over treatment. We don’t want to end our life in an ICU. So in order to make that happen, it has to be made very, very clear to a family. And I use family loosely, as in any loved one’s family of choice.
So it is, you know, I think it’s the ultimate gift that you can leave, and the gift goes both ways. I
Diane Hullet: love how you frame that as a gift to those who are left behind, because that’s really what it is. It can end up to be such a quagmire of decision making and guessing, and I think it’s interesting that even if you Say it’s your parents, and you kind of know what they want.
You’re pretty sure you know. It’s very different to hear them say it, or to have them leave a little video, or to have them write it down. Then you feel like, oh, for sure I’m making the right choice. So it’s, it’s almost like relieving people of the guilt of decision making.
Sue Mackey: Well, it, it is. And that’s a really good way to put it.
You take, you remove the guilt and the questioning. And they’ve actually found that people who When they follow the wishes of the person, the dying person after the death, regardless of whether the decisions feel like they were made in good. quote unquote, right decisions or questionable decisions, people who, who are just following the wishes of the person and doing what they asked for their grieving process is actually more smooth.
They, they don’t have that guilt and the questioning and the. Or the arguing amongst themselves, we should have done this, we should have done that. No, we did what she wanted. Yeah, yeah,
Diane Hullet: the arguing amongst themselves. I think about how I feel like death can be a real coming together for families, and it can also be a real splitting apart.
And which is it going to be? And sometimes, not that we have control over that, but we can influence that by what we’ve left for people to bounce around and, and be clear about. So I think our clarity is the dying person can help the clarity of those left behind. Absolutely. Absolutely. Yeah. So, I mean, this is sort of jumping in, but like what gets in the way, like, why don’t we do this?
And you’re from
Sue Mackey: so many things that get in the way. People, it’s a lot of detail. A lot of people don’t do detail. It’s a, it’s a, it’s a daunting process because it’s something we aren’t familiar with and we don’t know, we don’t know what, we don’t even know where to start. Many people will go to an estate planning attorney and get that much done and think they’re done.
The estate planning attorney will include advanced directives, some, some form of advanced directive within the estate planning documents. It’s written in legalese. It may be very thoughtful and it may be very thorough, but When the, when it comes down to the family honoring what’s in those documents, they’re reading an attorney’s words.
They’re not reading the words of the person who’s got the desires or the wishes or the restrictions or the, I could live with this, but I can’t live with that. So the way that I work is to help people to. Discern their values to go through a process of discerning what really is important to them. Most people don’t even know where to start with that.
Like, that they would even consider that it would be, would be important to know whether or not they would wanna be in the ICU to know whether or not they would accept CPR at certain points in life. It is a, it is a lot. They don’t know what they would desire as far as end of life treatment, if they’d prefer to be at home or to be in a hospital setting.
There’s just so many different aspects. And so it is, it’s overwhelming and we’re not used to talking about it. That’s a huge piece of it. We’re not used to talking about it. Yeah.
Diane Hullet: And like what you just said is so key that we kind of think of it as this we think of it as like, well, I dotted the I’s and crossed the T’s with the attorney or in my DIY thing I downloaded that told me how to do it, but that’s different than a conversation and it being in your own words saying what it is that you want.
And so how we’re really looking to dispel
Sue Mackey: confusion. Yes. Yes. And, and educate people. There’s a lot of learning that needs to happen around what is CPR? Why would it maybe not be a good idea at my age or in my medical circumstance? What are my options for end of ending my own life? This, this is something that comes up.
I did not initially teach much about that. I just did a broad brushstroke around it. And every single class that I teach, people want to know. Like, in depth, what are my options? Because if I get to a point where I don’t want to be here anymore, how can I get out? Without traumatizing my family and without, you know, You know, and we support, et cetera, et cetera.
So there’s a lot of education around that piece. I think you’d asked earlier about advanced directives and like what is an advanced directive as opposed to a living will. Yeah.
Diane Hullet: Let’s dive into like some of these terms here. And what I love about you is you’re like a translator, you know, you’re not an attorney.
I’m not an attorney. Don’t take this as attorney advice. If you’re listening. But translate it into some language so we really understand these, some of these
Sue Mackey: terms of paperwork. When there’s lots of different terms used for the same thing. So that adds to the confusion. You know what, I’m going to go back, Diane, because you’d asked me, why do people not do this?
And I didn’t completely answer that. Now we can go into the advanced directives. Let’s do it. They don’t do it because they don’t understand. It’s overwhelming. It’s an overwhelming process. It’s a dive. It’s a deep dive because doing just the paperwork, Is this is the surface work that we’re addressing, but underneath that, you can’t do the paperwork without having to face your own mortality without having to think about maybe even visualize yourself on your deathbed.
What would be the most comfortable situation for you and would you like to. To have all, everyone you know there visiting, or would you just want your closest few, it’s that we’d have to go through that process of actually being with our death and our dying and our mortality. There’s also just the not knowing, not knowing where to start, not knowing how to work it.
When I was taking my class at Naropa, one of the requirements was that we, that we write our advanced directive. And I’m like, of course, you need to write an advanced directive. I found the paperwork on my desk, like, five years later, it was still, kept getting moved to the bottom of the pile, moved to the bottom of the pile.
And I, it was like, why in the world have I not done this when I know, with all that I’ve been studying, how important this is? And it was because I didn’t understand the questions. Enough to even know how to answer them. So that’s how I really got into doing the education piece of this work was by educating myself on how to choose a medical power of attorney.
How do I even know who would be a good person? And what kind of qualifications, et cetera. What kind of personality style would it be my spouse, or it’d be better to have a friend, et cetera, et cetera. And then the other pieces of an advanced directive, how to answer the, answer those questions, make those decisions.
So that’s what kind of compelled me. Once I figured it out for myself, I thought, I bet there’s other people in the same boat.
Diane Hullet: Right, right. So it’s daunting. It’s overwhelming. And then even bigger than that, we have to face our mortality. And so there’s this huge kind of. Thing in the way, right? I remember when my husband and I, you know, we’d been married a little while.
We both knew having gotten married, it was time to redo our will. And we kind of dragged our feet and ask friends for attorneys. And finally, finally, finally, we committed to working with someone. And on the way to the first appointment, there was a bang. Big car accident. And I thought, okay, this doesn’t have to be perfect.
It just has to be good enough that if we had just been in that big car accident, it was okay. Because one of the things I think that was stopping me was this feeling that it had to be perfect. You know, it had to be just absolutely perfect instead of good enough.
Sue Mackey: That’s a very good point. And doing this work is a process.
It’s not a one and done. You do, you do the best you can, you get it good enough. Then you revisit as as time, as time goes on, as life changes, as we get a diagnosis, as we hit a new decade, as we, you know, people die. As things change, then we revisit and refine.
Diane Hullet: Yep. And I remember the overwhelm of those advanced directive questions.
You know, if you are in this state and this is happening to you, then do you want. You know, food. Do you want pain meds? Do you want and and I, I found it really overwhelming. So let’s go back to this. So advanced directive, also
Sue Mackey: called a living will of so called medical health care directive. Any, any version thereof.
And is that, is that
Diane Hullet: by state? Does it, does that range by state? Is that the deal, that they’re different names?
Sue Mackey: The states each have an official state form that addresses a couple of things. The first is always medical power of attorney. Who is the person who’s going to make your make decisions for you when you can’t and that happens I believed about 75 percent of us.
It’s somewhere along the way where we can’t speak for ourselves and someone else may have to step in and make a decision about a treatment or surgery or refusing treatment. So, the medical power of attorney is actually the most important piece of any of this. The, so the stated directives include that piece always, and then they’ll go into what they’ll refer to as a living will, which gets confusing because the word, the term living will is also used for the whole scope of an advanced directive.
So the state directives will include those two pieces and then sometimes they’ll spin off into some other things around eating and drinking at the end of life or dementia and that kind of thing. What I prefer as far as creating an advanced directives, an advanced directive is any, it’s an umbrella term.
It’s anything that you write down or you indicate in advance to help guide what will happen to you at the end of life, what you would prefer, what your wishes are. It can be all kinds of different pieces that you put together. So the way I generally work is I, I have people determine their medical power of attorney and get that document complete.
That’s the most important. If you’re doing nothing else and everyone over age 18 should have a medical power of attorney form. That medical power of attorney remains active as long as you’re alive. Not to be confused with the financial power of attorney, which that person is a person who’s going to make a decisions for you financially.
They’ll make decisions around paying, they’ll pay your bills for you, they’ll sell your car, your house, or you know, that sort of thing. So this medical person, the medical power of attorney, is the person who’s Making these decisions and then all and that document is is legally binding. So the hospitals are required to honor that they are required to utilize those people, the person that you’ve chosen as medical power of attorney and hopefully a couple of alternates in case that person is not available.
Those people are the people that the hospital staff will deal with. Beyond that, then the rest of the documentation is really all, it’s not legal necessarily, but it is supportive to the person who’s going to be making your decisions. So even the living will, if you wrote a living will, which is a document, and I said, it’s kind of a, it’s not my first choice of a document to include, but where it’s determining what you would want if you were already dying or in a coma, whether or not you would want life support.
That document does not legally require a physician to follow it. It’s there’s always a way around.
Diane Hullet: Okay. I see. And so it’s really the healthcare proxy who’s going to
Sue Mackey: make that call. Exactly. It’s another person.
Diane Hullet: It’s not the paperwork that living will paperwork is information for them.
Sue Mackey: Exactly, exactly. So it’s very important that you not just decide in your head.
Oh, I’m going to choose my sister Sally to be my medical power of attorney, and my two nieces to be alternates, and then not tell them, that’s not going to help a whole heck of a lot. You want a deep, intimate conversation with these people, the main person and the alternate, so that they really do know who you are, what you’re about.
What would be important to you? And you want people who will be able to step aside from their own personal values and act as if they were you to make decisions for you.
Diane Hullet: Based on the kind of suggestions or not suggestions. I mean based on the paperwork that you’ve thought through and written out, but is not legally binding.
I think that’s really key.
Sue Mackey: Right. A lot of people will include, they’ll include a dementia directive. That’s become a very popular piece to add in. Again, not necessarily legally binding Washington State and New York State do have state dementia directives that all of the hospitals are familiar with and there’s, there’s more legality behind it.
But for us, you can, there’s a plethora of dementia directives available online, finding one that you resonate with. There’s Compassion and Choices has one that you can walk through, and they’ll ask a bunch of questions, you answer them, and they spit out an advance directive for you. The
Diane Hullet: idea of a dementia advance directive, Sue, like, is that sort of I’m in SoundMind now, and I’m looking ahead, and if I were to get dementia, And I sort of fell on this scale of dementia.
The ones I’ve seen have sort of a like multi point scale. Like if I’m just a little demented, it’s okay. But if I get really extreme, here are some choices I would make. Is that kind of how you’ve seen them? That’s
Sue Mackey: how a lot of them work. It’s addressing your decision choices around mild dementia, moderate, moderate dementia and advanced dementia.
I often also use a very simple dementia directive that simply says when I get to a point of needing full time care, and you may need to move me into a nursing home, that’s what’s going to trigger this directive. And the way the dementia directive works is to give, you’re actually giving your decision maker permission to not treat you for any kind of medical thing that comes up, as in taking what I call an exit ramp, taking, allowing them to take an exit ramp to allow you a way out of your body at such point in time that you may not want to be here anymore.
Some people though, even early on with mild dementia, they just assume, take an exit ramp then, knowing that dementia is a one way road, it only goes one direction. And if there’s anything that presents itself like a cancer diagnosis or some, some such, don’t treat it and I’ll use that as an exit ramp to let me out of my body because I don’t want to follow the path to the end of dementia.
Diane Hullet: Yeah, it seems like the exit ramps I’ve heard of with that are like a UTI, not treating it. Urinary tract infection will actually cause systemic problems. Pneumonia, you could not treat pneumonia. And that can be, you know, I think pneumonia used to be called like the old man’s friend or something. Kind of a phrase for it, right?
Because you would, tend to take to bed and you would get sicker and weaker and you would die. And cancer is an exit ramp. Interesting. I hadn’t thought about that because there are sometimes these cancer diagnoses at 80 with dementia and what are you going to do?
Sue Mackey: Right. And people do treat because we’re, our medical system is, It’s not uncommon for someone with dementia to be going through chemotherapy and radiation and oh my god to put a person through that sort of thing with, with, while they’re living with dementia is not even kind.
Yeah.
Diane Hullet: Yeah. Especially advanced kind of advanced dementia where moment to moment and memory issues are such a big thing. You wouldn’t even know why you were feeling so terrible,
Sue Mackey: right? Yeah. So that’s often part of an advanced directive. And the biggest piece that I like to make sure that people include is a personal statement.
Writing out in your own words and in a way that takes care of the people who are going to make your decisions for you, giving them permission to let you go. In fact, it can be as strong as being able to have a power of attorney who you know would be willing to let you die. Who, because that’s really what it boils down to is a person who can make, who would be making a decision for you.
Very likely could be. I know that if we don’t put you on the life support, you will die. And I’m I can live with that. And that’s part of the conversation with your potential medical power of attorney. Would you let me die? Right?
Diane Hullet: Right. It’s huge. I think you’d agree with this statement. A man that I interviewed, chaplain Hank Dunn, he said, families, members or healthcare proxies feel like they’re making life and death decisions.
And he said, I tell them, no, you’re making a death and death decision. So this person is dying. Are they going to die on this path or die on this path? And if you’re choosing the path of extreme intervention and ICU late in life, that, that is a path, but it is different path. And not choosing that and their death and death decisions, not life and death, but that was a differentiation.
Sue Mackey: Yeah, I like. Yeah. Perfect. Perfect. And Hank Dunn wrote that wonderful little book on making choices. Hard
Diane Hullet: choices for loving people. Yeah. Really good framework for decision making because I think this kind of decision making is different than other decisions in our lives.
Sue Mackey: If nothing else, it’s a foreign language.
We think that of course you’re going to put the person in the hospital and put them on an IV. And if they can’t eat, of course you’re going to give them tube feeding. And in reality, none of that has to happen. Death is not the enemy. It just isn’t. And we can’t, certainly can’t avoid it. Forever. It’s all to go.
So, yeah, like, yes, it’s a, it’s a determination of which, which way we’re going to die as opposed to whether or not we’re going to die.
Diane Hullet: I really like the way you’ve talked about it being so important to who that person is, who is the person that can let you die and live with that. And I think there’s something too about writing.
And then also I’ve heard of more and more people using video. Yes. really powerful, but a very short video, you know, taken on your phone saying, Hey, my grown children, or, Hey, my nieces and nephews, you know, this is what I believe. This is who I am. This is what I want. And the decline of someone at the end of life, whether it’s through frailty and old age or disease process, that decline can be so intense that when they’re, you know, You know, in a bed kind of curled up very weakened and you go back and see this one minute, two minute video that they made where they’re very clear and you’re like, Oh, that’s how I remember this person.
They’re very clear and very direct. That’s just really different than agonizing over the poor. That’s the probably the wrong phrase, but like the, the person you feel so much compassion for who’s there at the end of life. And you just think, Oh, I want to just keep them here. And I love them. So what is the choice in that moment that really follows what is needed then?
Sue Mackey: Right. And, and honoring the decision that was made by the coherent person of their potentially not so coherent self down the road that may seem to feel seem to appear to be content in their dementia and sweet and smiling. I mean, we all, demented people have all different sorts of manifestations, but some people are seem very content and happy.
And it might be tempting to say, well, you know, why, why would I want to let them go? But if you had something as powerful as a video or a written word saying even if I am that sweet, seemingly happy person, my choice is not to be here. It’s okay to let me go. Okay to let me go.
Diane Hullet: Well, you know, you’ve been educating and working in this field for so long.
What, what other ways do you support people in having these conversations?
Sue Mackey: My main educational focus is a workshop that I run that’s eight weeks long. I do it a couple times a year eight weeks of two and a half hour classes covering all these topics and more. I go deep into funeral planning also. I field phone calls often from people who are, you know, especially around funerals, just lost someone, not sure what to do, that kind of thing.
And then I work with people individually. I’ll come to you. I come to go to people’s homes and I sit down with them and see what they already have, if anything, and then we start from what’s most feeling was pressing to them. We don’t have time to necessarily go as deep into all the different topics inside the education piece, but it’s some people prefer to work one on one.
The classes are, I love them because there’s always great synergy with the people who are there. There’s people bringing up things that. Ways of looking at things that you never would have thought of. So it expands your, your thought processes around all these different topics and such. So that’s the main, those are the main ways that I work.
I’m also president of the Funeral Consumer Society of Colorado, so through, with my volunteer hat on, I support people in a funeral choice, knowing what their options are, knowing what the newer body disposition and options are, the more environmentally friendly water cremation and composting, body composting.
And just how the funeral industry works and how to make wise decisions without getting caught up in being taken advantage of, that sort of thing. Yeah. And
Diane Hullet: Colorado has been in the news with some scandals around that too. I mean, so intense, right? So incredible. What about, you also run a death cafe and I don’t think I’ve talked on the podcast about death cafes, which sort of, but what’s the, what’s the death cafe model and how do you do that?
Sue Mackey: Death cafe is an international. Organization that was started maybe 15 years ago or so, and there are thousands of death cafes being run all over the world. If you want to find one, especially to find one on zoom, you can go to death cafe dot org, and most of them are listed there. Mine is listed there when I remember to put it up.
But it’s the third Thursday of the month at 630 in the evening till eight, and the format is extremely informal, it really is. The focus is on getting, having a format for people to be able to talk about the subject matter. And I kind of look at it as a desensitization process that you get used to saying dead and death and dying and my death and what I would want and talking about the afterlife.
Sometimes people talk about paperwork. Sometimes it’s whatever the participants bring to the conversation. So it’s not lead. It’s not There’s no queries or questions or it’s not even when I don’t even call myself. We’re not allowed. We don’t call ourselves facilitators. We’re hosts, the people who run death cafe.
So I do this with a friend, David Clark, and we just, we have people who show up on, it’s on zoom right now. We had been in person at the Lafayette library for several years. This is our ninth year. And we’ve been on Zoom since COVID, and there are quite a few people, especially our more elderly participants, who prefer the Zoom because they don’t have to drive.
Yeah. And it also allows for family members to show up from Illinois or California or whatever. We’ve had people from other countries show up. It’s just always interesting conversation based on who’s there. So
Diane Hullet: great. I love it. I think there’s some really interesting models. So there’s the death cafe. I know there’s a woman who has really, I think it’s just in the U S but death over drafts.
So she kind of promotes get a group together, host them at a brewery or a bar and have a beer and talk about death. So that’s kind of neat. And then there’s death over dinner. People are hosting death over dinners. So I think it’s great that there’s this plethora of kind of new and old ways to talk about these topics that are so hard for us in many ways.
I, I feel like in some ways, whenever I say this is new, I always feel like this isn’t new. We just got away from it. Like we just forgot for a while that death was part of the human experience and we need to talk about it and be present with it. And so all of a sudden it seems like this radical new thing to have a conversation, but really this is just.
Being human. This is just humanity. It’s such a huge piece of the human experience when people that we love die and we’ve gotten pretty, I don’t know, a little devoid of how to handle that in a way that really holds it and works with both the dying person and their family.
Sue Mackey: Yeah. Yeah. This was part, death was part of our lives up until about a hundred years ago, which is part of every household.
People died at home. Usually not of long lingering illnesses because they weren’t treating cancers or treating heart disease or treating C. O. P. D. and such. You just had the disease and that’s what you died from. And then the funeral was happened in the home, the body would be laid out in the parlor and somebody would build a casket out of whatever wood was around and.
Or, or they’d hire the furniture maker to build a casket. The family dug the grave, it was all family driven. And so it was, and it was in the house. And then we ended up a hundred years ago after the civil war, farming out the funeral part, the body parts, because you started embalming and you can’t really do that on your kitchen table.
So they would hire a professional to do the embalming part. And around the same time, we started sending people who were sick to hospitals. And people started dying in hospitals. So the dying didn’t happen at home either. We got very, very divorced from anything to do with death and dying. It wasn’t part of our everyday life.
So it is a beautiful, it’s very encouraging to see all of these different organizations and the many books that are being offered now. And it’s in the common culture.
Diane Hullet: Well, Sue, I’m so appreciative of your time and all that you’ve done, you know, you’ve paved the way, certainly in our area for this kind of work to be just regularly offered, just consistently offered, and I love the title of your course is called Thoughtful Exit Planning, and you can find out more about Sue and the courses she offers at Out of the box, end of life planning.
com and if you’re listening to this in April of 24, Sue’s got a course coming up starting soon. So you can check that
Sue Mackey: out. It’s been fun. It’s been fun sitting here.
Diane Hullet: I love it. I just think, you know, podcasts are such an interesting way to kind of eavesdrop on a conversation. And I just, have found it to be fascinating.
So as always, you can find out more about the work I do at bestlifebestdeath. com. Thanks for joining me, Sue. And thanks for listening, everyone.
Sue Mackey: Thank you, Diane. Thank you for the work that all the good work you’re doing in this field. It’s been quite remarkable.
Diane Hullet: Thanks so much.
End of Life Doula, Podcaster, and founder of Best Life Best Death.
© 2021 BEST LIFE BEST DEATH℠, LLC. ALL RIGHTS RESERVED.
© 2021 BEST LIFE BEST DEATH. ALL RIGHTS RESERVED.
