Aging Single #7: Advance Directives For End-Of-Life

 

In this heartfelt episode, Peter McGraw explores the challenging yet crucial topic of end-of-life planning for Solos with Teri Ashley, a certified advance care planning specialist and hospice volunteer. Teri shares her deeply personal journey that led her to start Mindful Endings, which is dedicated to informing and empowering individuals to make thoughtful end-of-life choices that align with their personal values. Together, Teri and Peter explore the importance of advance directives, the unique challenges Solos face as they age, and the emotional realities of facing end-of-life without a traditional family network, including what to expect from hospice and palliative care. Teri provides invaluable resources and insights on how Solos can prepare for potential diagnoses, such as dementia, build supportive communities, and ensure their wishes are respected. Join the Solo community for more information and discussion of this important topic: https://petermcgraw.org/solo/.

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Listen to Episode #226 here

 

Aging Single #7: Advance Directives For End-Of-Life

Welcome back. This is the sixth episode in the series on aging, retiring, and dying single. A series within a series. For the next few episodes, I’m going to be examining end-of-life issues for solos. This is a much-anticipated topic for an often-unanticipated aspect of life. My guest is a certified advanced care planning specialist and hospice volunteer, a master educator, a curriculum developer, a certified life coach, and a restorative justice facilitator. Her business, Mindful Endings, was inspired in the aftermath of her husband’s 2017 death ten weeks after he received a stage 4 cancer diagnosis. Her mission is to inform and empower your end-of-life choices. As she likes to say, your life, your values, your plan. Welcome, Terri Ashley.

Thank you, Peter. It’s lovely to be here. I’m excited to spend time with you and grateful for this gift of being together and talking about this important conversation.

Looking Back

That’s very you to say. You came recommended to me by way of a member of the solar community who you had been helping. Let’s learn a little bit about how you got into the business of helping people navigate end-of-life. I’ve already alluded to a personal story you have, but there was background to that background, yes?

Yes, there was. I came into this in an unexpected way. It wasn’t part of my plan. I’d been an educator for many years, a curriculum developer, and into restorative justice work. I was called out of that when, in 2012, I received literally a call from my dad telling me that my mom was in the hospital and she wasn’t doing well and that I needed to come to the hospital and help. It was an especially unexpected call in that my mom and I had been estranged for about 20 years. It had only been quite recently that we’d reestablished contact.

Of course, it’s my mom I’m going to go, but I hadn’t had conversations with her about how she was aging or what she was anticipating in terms of end-of-life care or anything like that. Honestly, at that moment, I didn’t realize that she would be gone in less than a week. When I got to the hospital, she was in bad shape. She’d suffered from chronic illnesses for about twenty years, but nothing that we expected was life-threatening. She’d had surgery for gallstones and came out of that surgery and wasn’t recovering well.

I found out when I got there that my dad, my brother, and the other person, I have one sibling, and the people closest to her were not temperamentally capable of accompanying her through this process. My dad had had polio as a kid. He had a huge fear of hospitals in general. My brother, I can’t explain why exactly, I don’t understand it, but he would walk in and out of the hospital room once or twice a day with this Big Gulp cup of coffee and wasn’t capable of being with my mom and nurturing her at the end of her life.

I had a friend at the time who was a hospice social worker, so I was familiar with hospice care and the amazingly wonderful things they offer people for end-of-life care in terms of making your life better. It’s not about how you die, it’s about how you make the most of the last days that you have. I reached out to hospice because of this friend as I realized pretty quickly that my mom was not going to recover from this situation. I was staying there 24/7. I was on my 4th or 5th day without any real family support with me, so I was eager for the hospice people to show up, like the cavalry, and help me out with this challenging situation.

As the hospice social worker came in toward the last day, of course, I didn’t know how much time we had left. My brother walked in and nixed the whole thing. He said, “Mom doesn’t need hospice. Who’s this woo woo stuff for anyway, you or mom?” Which was shaming and confusing. The hospice people walked out and I was left there holding my mom’s hand for the last two days without any support. That was a traumatic experience. I left that after my mom died and spent a lot of time feeling traumatized and regretful that I didn’t do a better job of caring for her.

I didn’t know what more to do at the time. I came away with the result that what was important to me was that I figured out how healthy families dealt with death and dying because the way we had done it wasn’t good for my mom and it wasn’t good for our family. There was a lot of discord during the brief conversations that I had with family members as my mom was dying. I didn’t want that for myself and I sure didn’t want it for my partner and our kids. My way of approaching that was to go and volunteer at hospice because I had received grief and loss support for them after my mom died and I was so grateful for their expertise and their compassion and care.

I wanted to give back, but I also had an ulterior motive. I wanted to know how healthy families, smart people, and people who were aware of their options would do things differently. I was working with probably my 4th or 5th hospice patient at that time and I went to visit Grace, who was in her late 90s. She had some cognitive impairments. She had advanced cancer. She was partially blind. She was losing her hearing. In the 3 or 4 months that we had had regular conversations, she talked to me often about being ready to die.

She lived in a senior facility and she would say the death stopped and took one of her neighbors and she sure wished they would stop for her, too. She was definitely ready to go. I was there on a Friday afternoon. It was a second visit that week. Usually, I only went once a week, but her only next of kin was out of town for a much-needed respite up in Keystone, where you don’t get cell reception. I think he chose that location on purpose. I was in total support. We were there on a Friday afternoon, having our regular tea and cookie happy hour and her appearance started to change.

She started to get agitated and I realized pretty quickly that she was losing the ability to speak clearly that she was having a mini-stroke, which was something that had happened to her many times before. I also knew that there was nothing that physicians or an emergency room could help her with. There wasn’t any cure for this and she was already on the verge of dying so. Calling 911 wasn’t going to be a helpful thing. I would put her in a situation where she would be taken away in an ambulance by strangers with loud noises and go to an emergency room with bright lights and be there at least 24 hours and not have access to people who knew her well and cared for her I wouldn’t be able to be admitted because we weren’t next of kin.

I wasn’t on her advanced directives as someone who had access to her. While she indicated maybe we should call 911, I thought, “That is the wrong thing to do. She’s my friend. I don’t want her to go through that trauma.” I did what I was trained to do, which was to go to the refrigerator and look for the red magnetic pocket called File of Life that shows concisely what basic requests are for people in that situation. EMTs around the country are trained to go to the refrigerator to look for that information.

Is it on the front of the refrigerator or in a folder?

A little magnetic pocket, like a 4 by 8 pocket. It says what medications you’re on. Who are your next of kin? Who’s your medical agent? Who your physicians are, etc. She didn’t have one. She’d been admitted as a palliative care patient for comfort care but not as a hospice patient. There’s a real line there.

What’s the difference?

Palliative care is comfort care at any stage of life. It’s a holistic approach to your medical care. Any of us could require palliative care. If you have a long-term chronic illness or you have an injury that takes time to recover from, a palliative approach to medicine will look at more than your injury and it will look at social-emotional needs and a host of other things that will make your life better during that time. Palliative care can happen at any time of your life. You’re only qualified for hospice care when you have a diagnosis that limits your life from this point forward to six months or less.

Grace had never accepted that she was in that six-month window. She’d never been admitted as a hospice care patient and she didn’t have those directives to guide my next steps. I was in a real quandary about what to do. I knew what was right, I also had protocols to follow as a volunteer, and I respected this organization. It was an ethical dilemma and I wrestled with it quickly in my head and split the difference. I called in and told them what was happening as I was supposed to because that was the first line of response was to call into the hospice agency.

I didn’t tell them that I knew that they couldn’t get ahold of her son. He would be the call that they would make. Trying to get ahold of him and failing and retrying would buy me some time to sit and hold her hand and see what would happen. She pulled through. She lived another three months. I was grateful that I hadn’t called the ambulance. I hadn’t put her through that trauma, but I was also shaken by having to make that decision without clear directives. I was rattled when I went home that night and talked to my husband about it.

The big takeaway from that experience was I was clear that I wanted to make sure that I never put my family through this. I never wanted them to be in a position to make decisions for me without having a clear understanding of my wishes, and I never wanted to have to do this for someone that I cared about again. This instant turned out well, but it could have left me in a much more difficult state of mind and could have been traumatizing. I went home and told my husband, absolutely positively, we’ve got to get our directives done now. We’re not waiting on this.

I’d been in education for a long time. I’d done a lot of curriculum development. I grabbed all the resources, the forums, sharpened pencils, and yellow pads. The two of us walked over to a brew house about a mile from our house on a Sunday afternoon. We were confident that we were going to knock this out in a few hours because we had the resources, we were motivated, we trusted each other’s judgments, we were good thought partners and we were planning on having a beer in a couple of hours when this was all done. T

To celebrate, start with some coffee, get caffeinated, knock this out, and then have a beer celebrating the clarity that you two have arrived at.

That was the plan, Peter.

It’s a good plan. I love the plan. I like a good plan.

I was pretty proud of it, too. The problem was we couldn’t get past the third question when we pulled out the forums. I knew my name. I knew who I wanted for an agent, but I didn’t know when I would or wouldn’t want certain medical interventions. I didn’t know it was, I would talk about it and say, “Maybe this, but maybe I don’t know. What do you think about that?” The more we tried to dig deep, the more confused we got. What I realized later is that we didn’t have enough experience with death and dying to put these big literally life-and-death questions into context.

Decisions And Interventions

What’s an example of one of those questions or a decision that you would have to make, or were you sitting there in the coffee shop and you would have to make it?

If I’m in a persistent vegetative state with no hope of recovering, do I want to have anything done at all to save my life? No holds barred? Do I want to stop treatment immediately and die? Do I want interventions done for a certain amount of time? How much time?

What are these interventions like and what will that look like? I see.

Which we don’t know. We can’t anticipate that. We don’t know what there’s a multitude of possibilities or another example, if I get all this ironed out for myself and I get all this down in writing, do I want my medical agent, the person who’s assigned to advocate for me to override what I’ve written or is this in cement? Is this in stone? Nobody can change.

As illustrated, you were telling your story earlier about your sibling. I can understand that siblings have different perspectives. They have different experiences, different connections to the parent, etc, or whoever it may be. You two had a conflict of opinion. There was no tiebreaker. The idea is that what would have been ideal, which is obvious in hindsight, is that it would have been nice to know what mom wanted. Now, there’s no debate or very little debate happening here.

That is exactly why we want to have directives. There are two major forms that we need to do and we’ll get into this more in a minute. Choosing your agent and then what your wishes are. It’s critical that people understand not to make those choices but also convey their values, principles, and preferences that have gone into making those decisions that they write down on those documents. The conversations are much more important than filling out the documents themselves.

You and your husband are sitting there at this brew cafe, and you’re eager to drink a beer. You probably need a beer at some point.

We definitely need a beer.

You’re a little overwhelmed by all of this because you don’t know what you don’t know. You’re well-intentioned, but you lack the expertise that is necessary to make good choices for yourself.

Particularly around who would be a secondary agent if my husband’s gone. We know each other best, but if he’s gone, who’s the next person to step up and take on the responsibilities, those kinds of things?

Teri, let me guess here, knowing you from what I already know about you, you’re like let’s start some research and figure out exactly how to do this. Let’s buy the books and watch the talks.

You are exactly right. You’re exactly right. I’ve got all of that, but I don’t have a breadth of experience. We actually came home and tried again a second time. A couple of weeks later, we thought, “Let the emotions settle here. Let’s try again.” We didn’t get any farther. What I did then at that point was realize pulling in this restorative justice perspective, which is when you can’t solve a problem with the resources at hand, make your circle bigger, and bring in more people.

What I did was invite four other couples who lived in our neighborhood. We’re about the same age as we were. Together the ten of us met then we called it soup group. At the time, we met once a month. The host made soup. Two couples brought salad, two couples brought dessert. In the middle of all that, between salads and dessert, we had in-depth conversations and pulled in TED Talks, podcasts, and articles. All that is important, but honestly, the most critical component is the deep conversations that we had with each other.

Part of the reason that it’s hard to make these decisions is that most of us don’t have much experience at all with death and dying firsthand. In the last 80 years, death and dying have become institutionalized. In the 1950s, 90% of people died at home. By the 1990s, less than 20% of people died at home. What that means is that we don’t sit next to people unless you’re a hospice volunteer or unless you live in close proximity to your dying parents. Most of us don’t have the opportunity to sit next to someone. I’m not even talking about the last two weeks.

I’m talking about the last years to learn what’s most valuable to people at that stage of life and what’s worth living for, what’s worth fighting for, and when it is time to let go. What happens when you bring a group of people together? Collectively, the ten of us had a good deal of experience. We had someone who had lost a child, we had someone who’d lost a brother, and we had people who’d lost parents. When we came together with all these questions and the resources, we could have deep conversations and question each other’s thinking.

It didn’t matter whether we agreed or disagreed with each other, it helped us clarify our own way of approaching this. I either agree with you for this reason, or I disagree with you, but now I feel stronger about my own position. We need to do that work before we have a diagnosis because once you have a diagnosis, your rational thinking brain is no longer working. You’ve got a smoke alarm going off in the back of your brain all the time.

I have to imagine, too, that you’re part of, as you were saying, nowadays, especially part of a medical system, and their goal primarily is to keep you alive.

That’s their responsibility. That’s what they’re trained to do. That is their focus. One of the blessings of the age that we live in is that there are more and more interventions all the time that can keep us alive longer. That doesn’t mean that it extends our quality of life. One of the questions that I ask repeatedly with people participating in the workshop that I offer is, what is the difference for you in an intervention that is life-enhancing and which is death-extending? We need to think about where that line is for us. To know that, we have to talk about what a good life means for me and what would a good death look like.

Community Interaction

You do this exercise with these community members and friends. Obviously, it’s enlightening, and as a result, each couple designs their own directives. Is that correct?

Yes. In January of 2016, the ten of us finished our directives. We invited a woman who worked for our local health district into our home and she brought her scanning equipment. She was a notary. We witnessed our documents, scanned them into health care systems and walked away feeling proud as punch like, “We’re twenty years ahead of the curfew.” We’re in our mid-50s and we’ve got this work done and we feel confident that we’ve done good work here. We’ve been very thorough and comprehensive in our approach.

I want to ask if the directive is a form that gets filled out with a great deal of detail, perhaps. You essentially submit it to your healthcare providers, your GP, etc. You keep a copy, of course, for yourself; the person who is your primary agent and secondary agent also gets copies of this.

Yes. We’ve got all that work done and we think we’re free to go. We’re in great shape. That’s January of 2017 in that fall in October. My husband was down visiting our daughter in Arizona, and he called me to tell me that he had gone to the doctor while he was there and hadn’t been feeling well. He had a stage four cancer diagnosis. It was very advanced. As it turns out, we had ten weeks left.

Out of nowhere.

I did not anticipate that. Terrible news, but a silver lining in that we had done that work. My husband Joe was fiercely independent. He was a do-it-his-own-way guy. Had we not had those conversations, our family would have been in conflict. We have three daughters between the two of us. Two of them would have been saying, “You’ve got to fight this, Joe. You’ve got to keep trying. You’re 57. you can’t give up now.” Two of us would have said, “His mobility’s impaired. He’s never going to be happy like this. He’s been very clear with his directives and there’s very little hope.”

At that point, anything that they could have done for an intervention was experimental and he didn’t want to live that way, but because we’d had these conversations, we were all able to support him in dying at home with hospice care in a way that was in alignment with his values, preserving his dignity and respecting his wishes. There were a couple of other things. One was that rather than running from doctor to doctor to doctor trying to find more ways to solve the impossible problem. We only had four weeks before he lost the use of his legs.

We had four weeks of mobility, which, of course, we didn’t know on the front side, but because we already thought through all of this together. We didn’t have to be doing this now at the very last moment. We were able to have amazing quality time together. We went up to Rocky Mountain National Park and walked around Bear Lake, one of his favorite places to hike. He used to do overnight winter camping there. We went to our favorite restaurant, an Italian restaurant in town, and had dinner together. We walked the Cathy Fromm Prairie Trail, which he also loved.

We went to our favorite independent movie theater and watched one last movie together. The most important thing we did was that was such a blessing. I don’t know how I thought to do this, but we went to our favorite picnic spot up at Horst Tooth Reservoir and we said our goodbyes early. I asked him to do it because he had such a precious relationship. We had worked hard to make this a very new relationship because we’d both been married and divorced before we came into this very intentionally, and we were exceptionally happy with each other.

I never imagined not living the rest of my life with him. I was afraid as he was dying that I would forget to say something to him that mattered and I wanted to say our goodbyes early so that we had a couple of days left to think about that and come back and say, “I also want you to know this or I have one more question for you.” I highly recommend that to say your goodbyes early. If you get that opportunity, you can come back and make amends to that process.

Post-Grief Transformation

I’m a little emotional right now. You lose your husband, but you’re able to do it in a way, I like this word, dignity with intention, being able to value and honor that relationship. I think that’s wonderful. My condolences, obviously. You are going through this transformation. You become this hospice volunteer. You’ve become a mini expert in advanced directives, fortunately, and are able to leverage this experience for your family. As you come out of that experience, you’re grieving, you’re mourning. What do you do next?

Honestly, I was underwater for a couple of years. It was such an impactful loss. One of the saving graces of all that came from our soup group that I hadn’t anticipated was that while our directives clearly built a circle of support around Joe. Having conversations with other people in our lives that we normally wouldn’t have is not a normal process.

It’s not, no, I agree. We don’t talk enough about death. We talk about all these other things that may not happen, and yet we don’t talk about this thing that will certainly happen.

True, Peter. What I found out afterwards was that the soup group, this conversation group among our friends, created a secondary circle of support that took care of me and my daughters after Joe’s death. In spite of doing the best we could for Joe, it was still an incredibly traumatic experience and it took me a long time to get back on my feet, but these people were there. Everybody has good friends, but not everyone has friends who can talk about death and dying. These people walked in and out of our front door over and over again in the last ten weeks of Joe’s life, but then they kept coming back.

That’s nice.

I remember so clearly how at one point, I asked a friend if they would bring wine over for me every night for a while because I was afraid to have the box in the house. I would drink too much. I had a friend who brought a little pint mason jar of red wine and left it on my step every afternoon so that I would have a glass of wine at night. I had another friend who took me out for Mexican food every Wednesday night for over a year. It’s important that we become literate about death and dying. We as a culture are pathologically averse to having these conversations, and we need to advocate for ourselves and the people we love to have these conversations with. That has been the fuel that has motivated my work since Joe died.

Being Single With Cancer

I want to pause and editorialize for a moment for the solo audience in particular. I had an episode about being single with cancer and one of the big takeaways that the guest had was ask. You can’t wait for people to step up. You’re going to have to take, especially in that role of single because usually, when you’re married or partnered, it’s obvious that the responsibilities fall on the shoulders of your family, your spouse, your dependence, and so on. If you don’t have a spouse, you don’t have dependence.

There is an element of rallying the troops, so to speak, that you can’t be too proud. I think that’s something that a lot of solos are right. They’re used to being self-reliant. They’re used to being autonomous and taking pride in not needing that. In the more recent episode on generosity and legacy, my guest talked about how she asked for help from a friend and her friend said, “I’m so glad you asked because you never asked for help. I want to be able to help you.” Then the last story is actually a personal story.

I’m doing a bit of writing and I was reflecting on my tendency to be a little too autonomous, especially when it comes to medical care. I was writing about two incidents. One was very old, was close to 30 years ago. I had broken my nose for the third time and my septum was completely jacked. I couldn’t breathe out of one nostril. I had to have a medical procedure where I had my nose broken and my septum fixed and so on. If you’ve ever done this, it’s incredibly unpleasant.

They pack your nasal cavity and you have to leave that packing in for several days. I don’t remember how long. I got dropped off at my apartment and was alone for days in a very unpleasant isolated state. I didn’t even think of setting up people to come visit me and care for me. The other story was I had a vasectomy and I went alone to get this vasectomy. I’ll be honest, it was an awful experience. I sat in that waiting room for hours. I was the last appointment. I didn’t have any food.

I ended up basically walking across the street after the procedure, after this very intense emotional procedure where you are very vulnerable and eating at an IHOP because I needed some nourishment before taking an Uber home. I remember a friend of mine saying to me, “Peter, why did you do that? Like I would have flown to Los Angeles and kept you company.” I digress for a moment and editorialize because I think sometimes we can be a little too good at life, and there are moments when we need other people. You need people who love you and those people want to help.

Absolutely want to be there.

It caused my friend great distress to hear my story.

No gold stars for going alone through those tough times.

Not in those situations.

People absolutely do want to help. That’s one of the hardest things when you’re in a position where someone close to you is dying or it’s you. Everybody comes out of the woodwork, and people genuinely and deeply want to help. If we don’t plan ahead and we don’t think about it before it happens, we’re so absorbed in, again, the smoke alarm of all of the things that are happening, we all know we’re going to die on a cognitive level, but when it happens to us or someone we care for, we’re always surprised. I can’t believe this is happening, and your brain is overtaken by that confusion. We can’t think about setting up systems of support, but if we do this work ahead of time, you can create systems of support.

Proxy And Directives

That’s right. I want to ask you because my mind is racing here. I want to lean into this advanced directive element because I think this is the most important thing that we can talk about here. You said that there were these two elements. What is the word that you use for the person?

It’s your medical agent. Sometimes, it’s called a proxy.

Your agent or proxy or proxies and then the actual choices.

The document that designates your agent or proxy is called your medical durable power of attorney.

Medical Durable Power of Attorney.

MDPOA for short.

Of course, MDPOA.

That’s the first document you typically address. Who’s going to speak for you if you can’t speak for yourself? It’s important that we understand that person is often referred to as your decision-maker, and that’s misleading. They shouldn’t be in a position to have to make decisions for you. They should know your wishes, values, principles, and preferences well enough that they are simply advocating for what you have already told them.

It sounds like they’re more of an executor.

Yes. There’s the agent and then there’s the living will, which talks about what kinds of treatments you do and don’t want if you can’t speak for yourself. Neither of these documents activate unless you can’t speak for yourself. Honestly, that puts us in a mindset of thinking very end of life. I think that’s also misleading because this process is extremely valuable for you to understand and get clear about what matters to you, whether a proxy has to step in and advocate for you or not.

The act of creating these directives is going to help you while you can speak for yourself because you’ll have clarity and not have to deal with the fog of war, so to speak, that happens.

For example, I never had to step forward and advocate for Joe. He was conscious up until the last two days of his life. He didn’t need an agent to step in and advocate for him, but because we’d gone through this exercise in depth, he was clear about what he wanted, all the people who supported him.

I want to ask this, the order of these choices. Does it matter choosing the agent proxy first or doing the directives first?

I used to say, get your agent, figure out your agent first. If you were only going to do one, have your agent chosen and documented. I say you have to do them both at the same time because I had a client who came through my workshop because they had been called in to support someone who, during COVID, had been intubated for breathing and was essentially brain-dead.

This person got called by the dying person’s medical team to say, “We need you to come in because this person needs to be extubated.” They didn’t know that they were designated as their agent. The person had never spoken to them. It was an extremely traumatic situation for this client. For anyone who’s going to advocate for you, you have to have in-depth conversations about values, principles, and preferences, and you only get to that work if you’re making the decisions you have to choose on your living will. They have to be done together.

Where do we start?

Start by thinking about who you would like to be your agent. If you don’t have an MDPOA if you haven’t done that, If you haven’t filled out that document and you can’t speak for yourself, the state will step in and make that decision for you, depending on which state you live in, that will be a next of kin or Colorado is different, it’s not a next of kin state, it’s a proxy state. That means that anyone who has a vested interest in you can step forward and say, “I’m an interested party. I would like to be this person’s agent.”

That can get complicated and it also takes time. Ideally, there is a list of criteria for someone who knows you well. They have to be 18 years of age, and they also, I would ask, how many other people have you committed to? You don’t want to be, particularly if you’re in an aging demographic, you don’t want to have someone as your agent who is also obligated to be an agent for a number of other people. It’s important to keep track of that. Eighteen years of age, they know you well. They have time to help.

They’re not underwater with childcare responsibilities, caring for their parents, or in deep projects with some work commitment. They’ve got to have time to help. They should be in good health and live near you because you may want them to accompany you to doctor’s appointments and be your thought partner as you make decisions for yourself. They need to be somebody who’s organized. They’re good listeners. They make friends easily. It’s important when you’re dealing with a lot of medical personnel. They have people management skills. They can win the respect of strangers by the way they comport themselves. They’re able to adapt to change. They’re not afraid to ask questions. They’re cool under pressure.

This is quite a list.

It’s quite a list.

It’s basically the person that you would marry if you were to go and get married.

One more thing above and beyond all of that, they have to be able to adamantly advocate for what you want even if they would choose something different for themselves.

There’s nobody that’s going to be perfect.

When I talk about how to do this well I’m, I have a strong advocate for building a team of people. I want somebody who’s going to be my agent, but I also want other people that surround my agent who have heard me talk about what is important to me and can bolster my agent and support them if they have to speak for me.

It seems like the backup is especially important because they’re immediately part of the team.

When we’re talking about all the extra help a person might need, particularly if you’re solo, I like to think about your agent as your point person on your team and then think about who can take responsibilities off that person so that they can focus on what’s most essential to me. Things like communicating among other friends and family members, a communication manager, so that your primary person, your agent, doesn’t have to respond to dozens of inquiries a day about how is my person doing and what’s the next, what are the results of the medical test?

I’m envisioning, and let me know if this product exists, but when someone gets married now, they often will have a website. The website will have their registry and it’ll have details about what the events are and maybe there’ll be a community board or something like a way for people to interact with other folks who are coming. It feels like you almost need the version of this for dying.

They do have. There is a website called CaringBridge that allows one person to input and then have that information disseminated to anyone that you want on that mailing list, which is helpful.

It’d be like, “Peter’s having his surgery today and we’ll post the results as soon as we know.”

Yes, and then they can also post well wishes and all those kinds of things. CaringBridge is for any health emergency or a health crisis, not for death and dying, and I’d highly recommend that, but you still need someone who’s going to be the gatekeeper of what information goes out. How much does the person who’s in crisis want to be shared? Some of us are more private. We don’t want everybody to know everything. A communication manager would be someone to think about having on the team.

Another person, another role that’s important. It would be a financial manager, someone to do insurance oversight depending on what insurance you have, certain procedures may or may not be covered at all. Some may only be covered with a deductible or with a certain amount of copay. It can get complicated fast. If you’re ill or dying, you’re not capable of managing that on your own. It would be wonderful when people say, “I do anything to help.” Like, who’s the person that could fill that role for you?

Someone to coordinate meals for you and the people who are caring for you. Someone who might oversee medications. You want to always have an up-to-date list of the medications that you’re seeing when you go from one physician to another. Sometimes, you have three physicians who are caring for you for different aspects of your illness. They’re always checking do I have the right medications because they don’t always know. Sometimes, the right hand doesn’t know what the left hand is doing. It means somebody that can take care of that, lay out the weekly regimen of pills, or sometimes it’s by the day.

When Joe was dying, there were probably eight medications that he was taking at 12 different times of the day. Somebody’s got to stay on top of all that and reorder prescriptions and things like that. another rule that could be assigned or thought about ahead of time is who’s going to be a good, caring listener, someone who can come in and listen without judgment or without interjecting their own emotions into the process. of course there’s all the home things, the laundry, the lawn, the pets, the maintenance. If we plan ahead, we can at least have those categories of support in mind. When people say, “I’ll do anything, how can I help? You can say, “How about this?”

I’m getting a little anxious about this. I can see why, looking back to your brewpub experience, how overwhelming it can become so quickly. You listed half a dozen roles, which you have to be very vulnerable to ask people, who would they be willing to do it.

You have to be willing to ask and accept help. If you don’t think about this ahead of time and this all catches you by surprise, you can’t breathe. There is not enough. You don’t have enough bandwidth to do all of these things. It’s not possible. Honestly, as the dying person, I’m going to be out of here. It’s not my problem after I die. Of course, I’d like to die in alignment with my values. That’s a big piece, but honestly, your survivors are left holding the bag if you don’t do this well.

I’ve heard this in a previous episode is actually not doing these things. It’s actually very selfish because you’re handing over all these problems to people who are unprepared for the responsibility.

Honestly, the logistics are not so much, although that’s substantial. The logistics of all that is substantial, but it’s the emotional heaviness of being left holding the knowledge that I didn’t do what I could have done to ease my friend’s passing. I wasn’t a good friend or we have different opinions about how we should have stepped in and cared for our friend and now we have this rift between us because we don’t see eye to eye and we didn’t know what he wanted, etc.

Obviously, one of the things that you advocate for because this is what you’ve turned your career towards, which is to get help in making these decisions. You host workshops. For example, my suspicion is there are books and talks, and folks who can consult with you, to facilitate these decisions and obviously help you fill out these forms correctly, get them filed correctly and so on in the same way that you would, as I’ve advocated, speak to your financial planner about your planning for your retirement.

Procrastination

I think persuasively, you’re essentially making the case that in the same way you plan for your retirement, you should plan for your end of life. I was at demise, but that’s a bit dramatic. Nonetheless, yes, this point is well taken. I’m sure people are listening and saying, “I envision this team. I could see this team. I could see the challenges in making the team and how I should start on that.” You were saying that you need to do both of these things together. You’re going to have to start planning these directives. This is not easy either.

There is support out there for that. I mean, we have our ways.

Let’s start with a little bit of the abstract. What are some of the big decisions that you’ll need to anticipate?

Before we go into that, let me talk about the fears. Why do people procrastinate on doing this? Research tells us over and over again that the things people fear the most are dying alone and dying in pain. If you’re well informed about hospice, you wouldn’t worry about either of those. There are hospice volunteers who will come and be with you. The interdisciplinary team that steps in to support someone who is enrolled in hospice care is robust.

You have your medical doctor, you have a registered nurse, you have RNAs that come in and do personal care. You have a social worker, and that’s the basics that are required by Medicare. Beyond that, many hospices offer additional services such as grief and loss counseling, therapy, and chaplaincy. Actually, chaplaincy is required. There’s a VA service for art therapy, music therapy, and massage therapy. There is a robust team that comes in and supports anyone who enrolls in hospice.

People are supporting, it sounds like.

To be eligible for hospice, you have to have a diagnosis, a life expectancy of less than six months, and you need to be willing to relinquish curative treatments. Your Medicare dollars that would go to curing, trying to cure the disease that you’re dealing with, get shifted over into palliative care, comfort care, and support services that allow you to live your best life during your last days. I see.

That’s very useful to hear because I think this idea of dying in pain in particular, and then for others, maybe a little less for the solo crowd, dying alone, perhaps. As an aside, I’m trying to track down the author of a book about dying alone, who has some research that reveals that some people prefer it. Maybe you have this experience, and I have not started reading the book yet, and I don’t think it means going it completely alone.

I think it’s in those final moments, this idea of being alone, a chance to reflect and maybe even a chance to release people from that painful experience. This idea of dying alone, the fear of it is not universal. While I think the fear of dying in pain is close to universal. In either case, regardless of what your beliefs are, it’s very useful to hear if you’ve never been part of the hospice process as supporting someone to not realize that there’s a lot of support for the individual.

There is.

That’s great.

Things To Be Afraid Of

The things you should be afraid of.

Let’s get into it.

You should be afraid of not documenting your wishes because of the breadth of interventions that are continually available and continually developed, and there are so many medical interventions that can extend your life. We didn’t have that many options in the past, but now there’s always one more thing. As you mentioned earlier, our medical professionals are trained to save lives. That’s their whole reason to be there. They don’t want to let go. That’s not in alignment with their ethics and their mission.

It’s a failure. When you die, they have failed. Is that sense of it, yes.

Rather than looking at death as a medical event, we want to look at death as a personal event. Taking time to write your directives ahead of time allows you to do that, to make it a personal experience rather than a medical experience. What you should be afraid of is unwanted, unnecessary, unhelpful interventions that extend your dying but don’t extend the quality of your life. That’s for you. The second thing you should be afraid of is leaving your survivors in a place of conflict or regret because they weren’t able to support you in a way that felt like they were being good to you.

They’re guessing, they’re disagreeing, they’re unsure. Was this what he would want? I don’t know. Yes. I could see how that could be.

When that happens, relationships break in ways that sometimes can’t be repaired. I know my biggest concern would be that the people who support me would have conflict over what happened when I died that would break their relationship. Instead, my vision is I want this experience to be profound enough that it will knit them together. I want my death to be a shared experience that is instructive and spiritual and lightning for them. A bonding experience that they can learn from and grow from.

What are some of these directives? What are some of these decisions that people can do?

Quite frankly, the form itself is deceptively simple. Every state has its own specific form and you want to be sure to fill out the form that’s unique to your state, but it’s asking you basically two things. If I have a diagnosis that my life will be over in six months or less, what interventions do I want?

Of course, we don’t know what the specifics of your illness will be, but do I want you to intervene at all costs to save my life? Do I want you to do interventions for a certain amount of time? Do I want you to do nothing and let me die by natural process from where I am right now? For someone who has a cancer that could linger for months and months and maybe longer, it might mean that I have pneumonia and I don’t want you to give me an antibiotic or have a urinary tract infection. Please don’t give me an antibiotic.

Keep me comfortable. I have a constitutional right to all the pain medication I need to keep me comfortable, even if that advances my timeline and death. That was passed by Congress in 1997. I want people to know this because I’ve been in an assisted living situation where someone was not receiving all the medication that she needed to be pain-free and comfortable. We all need to know that. It’s a constitutional right. If people are not receiving the medication they need to manage their pain, then the facility and the personnel are liable.

That’s why you want a proxy who can manage that situation first through charm, charisma, connection, and persuasion. The person who, if speaking softly doesn’t work, then takes out the big stick.

Yes, absolutely. We need to know that. This was a roommate to a woman who was my hospice person. I was visiting my hospice person, but the woman who was in the bed next to her was in excruciating pain and she had a reputation for being a little bit of a complainer. People said she wanted attention, but this particular day, she was in extreme pain and she wasn’t getting the help that she needed. I happened to walk in and make phone calls. Finally said, “No, I’m not leaving this room until this woman’s pain is treated. This is malpractice and she needs support.” You need to have people that will do that for you.

Thank you for doing that. Sorry. Obviously, this is a very emotional topic. I’m not even at the center of it. I’m deeply affected by the stories.

The Positive Side

Peter, let me flip this a little bit because it can be excruciatingly horrific if people aren’t supported appropriately. What we haven’t talked about is that it can be profoundly uplifting and deeply touching. It can be an incredible opportunity. Do you think about being with a newborn baby and how much wonder and awe there is in that? This is the other end of the continuum.

Ira Byock, who is a nationally known palliative care physician, talks about end-of-life being the last stage of personal development. There are things, such as this liminal space, this threshold place, that you only get to when you know that your days are exactly numbered. People have amazing opportunities to heal, grow, and gift each other with insights that we can’t exchange outside that liminal space. It is a privilege, an honor and a gift to be able to step into that space with someone. There are beautiful things to be learned.

I think that’s wonderful. Forgive my digression here because I want to lean into this idea. It’s something that I’ve been playing with in my own life. I’ve been reading a lot about Buddhism and philosophy in general. We’re reading the Stoics and so much of our great minds have tried to find a way to help us manage the human condition. The vacillation between boredom and pain. I have a Matador episode about finding bulls in your life as a way to deal with both of these elements. It came into sharp view for me.

I had a dilemma dinner, and there was a young man there who had been very badly hurt in his relationship. He had a relationship and he was still grieving it. He has goals. He wants to eventually marry and have children. He wants to meet a life partner, but he’s scared because he doesn’t want to feel that pain again. I said to him, “You can’t have one without the other.” In the same way, you can’t have life without death.

I’m starting to arrive at this view that heartbreak is as important as love in a lot of cases, that this is what life is, that we have to find a way to find the meaning and value in the bad things. They can’t always be managed, they can’t always be avoided, and they can’t always be tamped down. We can’t turn ourselves into stoics where the entropy in the world doesn’t affect us. There are moments in time when we need to lean into that, and I think what you’re suggesting is there’s beauty in leaning into loss, transitions, and endings.

There is profound beauty there. There’s so much to be learned in terms of you’re the survivor. If you’re the one who walks away still alive, your life will be changed for the better by the experience. You will make different choices. There’s not a day that I wake up since Joe’s died that I don’t think about what a gift this day is. I walk out the door every day with the clear intention that I want to see, see every person I meet today, whether that’s the barista at the Starbucks or it’s the guy I pass in the parking lot. I want to see that person. There’s incredible poignancy in being that close to death that changes you for the better.

Form

There’s a lot happening here. You were saying the form is simple in a way but complex.

It is simple. For Colorado, for example, your MDPOA, the form that you fill out to choose your agent is a two-sided form. It’s one piece of paper. It says, “This is who I am, this is my first choice, this is my second choice.” These are the people that could be consulted, which I think is important that we think about that because of HIPAA, our medical professionals can’t share information without our express permission.

Only your agent has the authority to advocate for you, but there’s a section that allows you to have people who could be consulted and present with your agent when your agent talks about your medical conditions and your options. They have permission to be there in those conversations if you’re not there to give that. There’s another section that says, “These are the people that I want to be notified if life-sustaining interventions are being withheld or withdrawn. My death is quite imminent. I want these people to be notified before we take that next step, the last step.”

One thing I want to point out and then follow with a question is the medical establishment is kin-based. It’s very focused on your spouse, your children, maybe siblings, parents, and so on, and not friends as much. If you are a solo, you may have a more limited family structure or kin structure, but you have a large family of choice. There are special considerations there. This is one of them.

That’s where you can codify that and make it official.

You can wave this sheet of paper in someone’s face who doesn’t want to admit you because you’re not his husband, you’re not his wife, you’re not his child, you’re not his sister or brother, and so on.

We know for all of us, those family-of-choice relationships are often more meaningful and richer than kin relationships.

Yeah, because you chose them. You both opted into that rather than defaulted in.

Voluntary on both sides.

Medical Aid In Dying

I have a question for you, but I’m not sure it’s the right time to ask it. I think it’s related to this issue, which is medical aid and dying. Is this part of that form or is this a separate consideration? I actually want to read something a listener wrote. “I’m probably not the only aging solo to be thinking about this because institutional care is both terrifying and unappealing and drains one’s financial resources too, I find myself thinking that a final exit strategy would not only enable me to avoid an unhappy last chapter under the influence of big medicine and also leave more money for people and causes I care about.

What are your thoughts about this?” This is actually part of a thread on the solo community, which people can sign up for at PeterMcGraw.org/solo. Another listener echoed, “I would like to find out more about assisted suicide. I do not want to live past the point where I’m in great pain or take care of myself. I would want to know any legal or ethical solutions.” I want to say an additional thing, a third point from my own personal perspective is that often what makes someone a solo so much is because of their sense of autonomy and self-reliance and wanting to choose.

You’ve been talking about making choices along the way. One choice here is to be proactive. You know that you are not going to live very long. If you’ve read this episode, what is the path going to look like because of hospice and so on? You decide I’m going to take matters into my own hands. I think that there’s been a lot of legal changes about this. For the person who’s reading and wants this as a possibility, where do they start? What are the considerations?

Let me tell you the very best resource for that is called CompassionAndChoices.org. They have been at the forefront of the fight for legislation that supports our right to choose how we end our lives.

I have to say I think there’s probably a very strong religious element to this.

There’s so much pushback from religious communities.

Suicide is considered a sin. You can’t do that because that defeats the purpose.

You’re playing God.

That has changed as we’ve become more secularized. This is because certain countries allow it and certain states allow it.

We have ten states that have right-to-die legislation: Hawaii, Washington, Oregon, California, Montana, Colorado, and New Mexico. Western states. New Jersey, Vermont, Maine, and the District of Columbia. In those states, you have to be 18 years old or older, and again, you have to be in a terminal stage of decline, six months of life expectancy or less to qualify. You have to have the capacity to self-administer medication and you have to have the cognitive capacity and decision-making capacity to qualify. You have to orally request the medication twice, meaning face to face. They’re changing legislation to allow that to happen virtually, but in the past, you had to go into the office twice. Your diagnosis has to be confirmed by a consulting physician. Those are the the basics.

There are some backups here that someone doesn’t make a rash choice or you’re not misdiagnosed or something like that.

There’s typically a waiting period. Colorado changed that from 15 days to 7 days and that can be waived with a life expectancy of 48 hours or less. The legislation differs a bit depending on your state, but those are the basics.

You said, administer yourself. These are pills or this is when you give yourself a shot or a shot into an IV is pills.

Pills.

I know there are countries that do this because before I became aware that this was legalized in various states, my plan was to head to Switzerland. We’re going to throw down, buy some business class tickets for some friends and we’re going to take the trip and see the Alps one last time. My guess is that Europe especially, there are countries that have this that are a little more progressive. I’m not surprised.

What I want to say from personal experience is that I would totally opt into medical aid and dying. I’m specific about calling that medical aid and dying. You don’t qualify for that unless you already have a terminal illness. It is not suicide. You are going to die from something already determined. The PC term for that is medical aid and dying. We need to get suicide out of our vocabulary when we’re talking about making this choice for ourselves. The problem is that there are situations where you may have a chronic very painful condition that isn’t going to kill you in six months or you might have dementia, which can last for years and years and years.

I want to get to dementia, too, because I think we have to cover that, at least in the ending here.

I agree.

You can’t use medical aid and dying of a dementia prognosis or a chronic condition.

A chronic condition that’s life-limiting. It’s something that limits your abilities so much that your quality of life is below your acceptable threshold.

There is a solution to this, though.

Yes, there is. It’s called VSED, which is an abbreviation for Voluntarily Stopping Eating and Drinking.

This is an alternative to medical aid and dying.

Any of us have the constitutional right to stop eating and drinking any day we want. It’s protected as of 1990. we have the constitutional right to refuse any intervention we don’t want.

What year did you say?

It’s interesting that so much of this is very recent.

Much into the thanks of Compassion and Choices work as an advocacy group.

What does that look like? If I decided to do that or if a loved one decided to do that, they get a dementia diagnosis, they’re starting to go downhill, but they still have their faculties or you’re in tremendous pain, and there’s no sign that it’s letting up. What happens? How does this happen?

First of all, let me reference your readers to a TED Talk by a woman named Phyllis Schachter called Not Here By Choice. It’s 2013 and a book that she wrote called Choosing to Die. I’ve had personal conversations with her about this. She’s the go-to resource. in terms of understanding the process in excruciating detail, I’d highly recommend the book Choosing to Die.

Also to tell you and your readers that Joe chose to stop eating and drinking after he lost the use of his legs four weeks after. He stopped being able to walk. He was confined to a hospice chair or hospice bed. He couldn’t care for his physical needs. As I mentioned, he was highly independent and valued his dignity, and knew he wasn’t going to recover. He had written this into his advance directive that if he came to that situation, he would stop eating and drinking.

Six weeks after his initial diagnosis, he stopped eating and stopped drinking water. A few days into that, he said it was too hard not to drink for him. He wasn’t prepared to give that up. He took in small amounts of water and we waited for him to die, knowing that that was going to be faster than waiting for the cancer to overtake his system. Medical aid in dying was only a year old at that time in Colorado. We were unfamiliar with it.

He would have qualified for that, but we didn’t know enough and we hadn’t talked to people with personal experience. It was not uncomfortable and typically, not going without water has an analgesic effect on the body and going without food for the first couple of days, you have hunger and pains, but after that, they tend to go away. At a certain point, if you’re very clear about this being your course moving forward, you qualify for hospice support.

Any other pain management that you would need can be managed by hospice. Most hospices support visas, but there’s also a lot of misinformation out there about the crazy world we live in. If you’re asking someone who comes from a more conservative religious perspective, you may get misdirected. Make sure that if that’s a choice you want to make for yourself, you get connected with your hospice organization and with compassion and choices, so you have the support you need.

It seems to me that as you’re doing the work with these directives, these are some of the other topics that you want to be thinking about because you’re in the same way that we plan our lives, we want to be able to plan our debts. The timeline for V said typically this is a number of days usually?

Wilderness training to go hiking up in the mountains They tell you like 4 days without water, 10 days without food, something like that. That’s what we had in mind. We didn’t ask enough questions. It was four weeks for Joe. Four weeks without food, which was pretty excruciating, I think, more than anything.

I think that’s typical, though.

It can go longer than that, honestly. I’ve read accounts of 6, 8 weeks. It depends so much on how healthy the person is. If they’re very frail to begin with, they won’t last long, but when you’re surrounded by people who love you, you have your pain managed.

The body is good at staying alive.

It’s programmed to do that.

It is. That makes me very happy to hear about the advances in medical aid and dying.

I would say to your listeners that if medical aid and dying were not an option for me because I either had a longer life expectancy or I lived in a state that disallowed it, I would absolutely choose VSED for myself as well. There’s no reason we have to linger and suffer when our life doesn’t serve us anymore.

Dementia

Let’s talk about dementia because I think I recently did a genetic test. I had never done that before, and I was doing some nutritional testing and so on. They did a DNA test, so I did a swab. I was reluctant to find out my risk factors for Alzheimer’s, which was going to be revealed in this test. Even the guy who gave me the test debated with him whether I wanted to know. I decided that I wanted to know that if it was low, I would be happy, and if it was high, I would be happy because I could plan. I could maybe make some adjustments to my lifestyle, for example, but it might also create some urgency, some perspective, and so on.

I had a great uncle, a very kind man, who I got to witness his Alzheimer’s. Seeing this vivacious man become a shadow of himself was heartbreaking because his brain didn’t work the same way anymore. I saw the toll that it took on his spouse. He was very isolated from him, and so on. I think a lot of people would share this belief, which is I’m not going to do that. I’m not going to do that or I don’t want that for other people in my life in a sense. As you’ve mentioned, you can’t do medical aid for dying in this situation. A whole host of other decisions need to be made around this. Let’s talk about what some of those will be to get people thinking should.

I’ve taken a deep dive into dementia care in the last year because of feedback I got from workshop participants. When we complete our living will and our MDPOA, we haven’t addressed dementia at all. There’s nothing in there that covers the what ifs and what do I want if that were my situation. It was my intention that I took a week of retreat.

I’d been collecting notes, digital notes, and paper notes and files. I took it up to Red Feather Lakes for a week. I thought I would knock out this new curriculum and have an add-on module to the workshop that I do. Very similar to my experience at the brewpub with Joe. It’s like this is a deep rabbit hole. I don’t know enough about this to be able to advocate from a very informed perspective.

My grandfather also suffered from Parkinson’s disease and Alzheimer’s, which go together. I found out all these years later that they typically concur. They happen concurrently. I had a lot of firsthand experience like you did with living and caring for someone with dementia. Before I can decide where my quality of life is, where this line that we’re talking about all the time with our directives about when is life serving me and when am I extending my death with dementia is fuzzy for me because it depends on the quality of care that I’m able to receive.

Let me say that in trying to get a better handle on what I would want for myself in a dementia directive, I wanted to know what good quality care looked like. I found through research the work of a woman named Judy Cornish out of Idaho, who’s written the DAWN Method for dementia care. DAWN is an acronym for Dementia Alzheimer’s Well-being Network.

Her mission is to help people learn how to care for someone with dementia in a developmentally appropriate way, understanding that while they’re losing rational thinking skills, they still retain a lot of intuitive thinking skills and there’s a whole part of their brains that still functions quite well, but we’re such a left brain linear thinking culture that we discount that and don’t look at the gifts that come with that.

I heard this story, correct me if it’s wrong, but dementia patients are very emotionally in tune.

Absolutely true. When we lose our sight, our other senses become stronger. When we lose access to our rational thinking brains, our intuitive thinking skills sharpen.

For example, coming to visit your loved one who has dementia and being in a good mood puts them in a good mood.

Conversely, if I come with concern and worry about you because you have dementia and you’re not the person you were the last time I saw you, that person will pick up on that immediately. They may not understand why there’s this energy of agitation and worry, but they’ll absorb it immediately. That’s central to her method for caring for people with dementia is mood management and understanding that that’s on us, the people who have their rational thinking skills to take care of that as we accompany someone as a care partner. There’s a huge misconception around dementia and that is that people with dementia are angry, argumentative, defiant, oppositional, and we’ve all seen it, but it’s not because of dementia. It’s because they’re consistently being asked to do things they’re no longer capable of doing.

They’re frustrated.

It’s an assault on their dignity. They’re still adults, but they can’t do what we’re asking. In almost all medical settings, there’s a propensity towards reality orientation, which is appropriate in almost every situation except someone with dementia. Why would I argue with you that today is Monday if you think it’s Thursday? Why would I tell you you already have breakfast if you want, if you’re hungry and you want breakfast now and it’s 3:00 in the afternoon? We’re so keyed into reality orientation that we’re constantly arguing with people who can’t understand what we’re saying. Either they accept that our truth is right, which makes them fearful because they understand that they don’t get it anymore or they think we’re punking them.

It’s almost like you need this improvisational yes and perspective where they say, “I want breakfast afternoon, like what great. You want eggs and bacon. Let’s make some pancakes.” It’s a very yes thing.

I actually talked to Judy about inviting her care partners, and her caregivers to take improv training. I think it’s absolutely the right approach.

I totally can see that. The saying is the reason why you want a yes and an improv, because if you say, “No, you stop the scene. There’s nowhere to go.”

With dementia, you break the relationship. How do we continue to partner with someone as a trusted friend? There are lots and lots of strategies which Judy’s beautifully documented in.

I think that’s wonderful. I want to turn this back to the person who may be concerned that they get dementia. For example, I very easily could have come back very high risk, for example. Suddenly, now I’m considering this. I did a bunch of pre-work on this to see how much a low-risk or high-risk change the probabilities and it’s pretty substantial actually. It turns into something that is fairly low to fairly moderate. You’re certainly going to get it, but it changes the probabilities, not 1% or 2%. I would then maybe see this potentially as looming, especially if I live long enough. That’s another element of this. If you live long enough, the likelihood that this stuff happens goes way up, no matter what your problem is.

Yes, it does. If we’re going to be a super-ager, definitely at risk. The statistics on that are at 65, the likelihood of having some form of dementia is 2%. That likelihood doubles every five years. By the time you’re 85, your chances are one in three. What’s interesting though and defies the statistics is a seminal study called the Nun study that started in 1986 with the school sisters of Notre Dame. It’s an amazing study. The results from that study are still being analyzed.

The agreement was that there were 687 nuns who had joined this sisterhood, and they agreed to share the autobiographies that they had written when they were somewhere between the ages of 19 and 21. Also, they shared any other personal correspondence that they had saved over the years. At the time the study began, they were between the ages of 75 and 107. In addition to sharing their written works, they also agreed to donate their brains for autopsy and the focus was on dementia.

The interesting finding was that there were women in this group whose brains were autopsied with clear indications that they would have cognitive impairment due to dementia, but they never displayed those symptoms in their lifetime. The correlates to not having dementia, even though your gray matter clearly shows that pathology is the leading one, which was idea density, which they measured by linguistic fluency in their writings. Did they have a breadth of knowledge, and were they vivacious in their expressions? They’re measuring idea density by their linguistic abilities.

This is going all the way back.

All the way back to when they were 19 or 20 years old. The other thing that was correlated with a reduced risk of displaying dementia behaviors was a positive attitude.

This came up in the Big 100 episode about super-agers. One of the things that shows up as common among people who reach a 100 is their optimism.

Dan Buettner talked about that. He said, “Not a grump in the bunch.” Positive attitude. I want to do a little aside on that one is bring me back to the other attributes. I also work as a life coach. One of the things that I find most powerful, what are the metrics for having a positive attitude and not being a grump. What’s measurable? How do I demonstrate that in the way I live my day? It’s being complaint-free.

I have a saying, “Never complain, never explain,” which I try to live by.

There’s a book I love written by Will Bowen called A Complaint Free World. Bill was probably still a minister of a big box Midwestern church, I think Kansas maybe and he noticed as he was done with his sermon that people wanted to get out into the social hall. People wouldn’t even have their coffee after they talked about all the goodness and love they wanted to spread in the world and gossiping and complaining about things.

Welcome to academia.

He noticed that in himself as well and decided he needed to change that. He wanted to change the whole culture. He put out this challenge to his parishioners to be complaint free for I think it was 40 consecutive days.

It’s a very lengthy thing to do.

He made up purple complaint-free bracelets and the deal was anytime you complained, you had to move your bracelet over to the other wrist, so you had a physical reminder that you’ve done that again and you have to start your counting over because it has to be consecutive days. Pretty powerful. On average, it takes 6 to 8 months. Sticking to it takes 6 to 8 months to get out of that complaint habit. It’s life-changing. Part of building a positive attitude is becoming complaint-free. I invite anybody to take on that challenge. I realized that I still complained about the weather recently.

Searching For The Good

I complained about academia. I wrote a paper. It’s actually one of my favorite papers. I wrote a paper called Humorous Complaining because I used to think that I didn’t complain. I was like, “No, I do complain, but I make jokes about the things that annoy me.” That’s better, but it’s still not. I did a trip and I did a very light mushroom trip as part of my trip. I took a fraction of what I would normally take to alter myself a little bit, but then I kept my day the same.

I had this insight that I think people, if they’re honest with themselves, might see themselves in it. That is how much judging I do, walking around and interacting with people in the world and judging them for whatever it is about them, that I find displeasing in a sense. It’s a misguided attempt to feel better about yourself. , that’s what it is. What I decided to do was, and I realized this serves no one. It doesn’t help them.

They don’t know that I’m judging them negatively. It puts me in a negative mindset and it focuses my attention on the negative things in the world. What I’ve started doing is when I encounter people in life, I’m looking for the good thing. Like, “I like his glasses. Her hair looks fabulous. What a great sartorial choice. How nice they smiled at me.” Honestly, it immediately made a huge change in my mood, in what I’m looking for, what I turn my attention to. I wish I had started this years ago, but it’s to that, to your point. It’s the opposite of complaining. It’s finding joy and happiness and goodness and beauty.

What are we looking for? Dr. Keltner wrote the book on Awe and he talks about moral beauty. Oh my gosh, having that word helps us find it in the world. It was such a new concept for me. I was blown away about it. I attend a Unitarian church here and there’s an elderly woman who has advanced dementia. She had to go talk to the minister at the end of a service. She was marching up to the platform, and she literally stumbled and fell as she tried to get through. One of the ministers, Reverend Elaine, sat down on the floor to talk to her as if nothing had happened. It’s like, that’s moral beauty. I want to keep looking for that in my days. I think it’s so important that it’s more than not complaining. It’s what we are looking for.

If you look for it, you’ll find it in this world. Especially because we now have in our pocket a device that can reach across the globe and find anything that you want it to find. I want to return, I digressed, but you were talking about optimism, these other predictors.

Let me come back to those. We talked about idea density and positive attitude. Sleep is another key protector against dementia. What happens when we go into deep sleep is that there’s a physiological process that cleans out the metabolites that accumulate between our neural connectors, and the synaptic areas between our neurons. That happens when we get into deep sleep. If we don’t get good sleep, that cleaning process doesn’t happen. Good sleep is important and so is exercise. The interesting thing about this study was that it showed that exercise was a protective activity, even if we didn’t begin until later in life. That’s hopeful.

Episode Wrap-Up

Never too late. That’s very useful. What I want to do as we wrap here, this has been incredibly useful. I think, especially tactical given this series, which can be a little bit abstract at times. Let me wrap up with a question for you. It’s a two-part question. What are your final thoughts regarding end-of-life planning that you would offer, especially singles, and where should they start?

One of the things that we know is that by asking the question, my good day is X. Identifying your priorities, and having conversations about that is one of the most powerful things we can do to enhance the quality of our last days. People who have those conversations are 50% less likely to endure chemotherapy during the last three months. They’re 90% less likely to have chemo during the last two weeks. They have fewer end-of-life surgeries, one third lower costs. Start hospice sooner, spend less time in the hospital, they’re less likely to die in the hospital or an ICU, there’s less suffering, and they live 25% longer.

What I hear you saying, is powerful, if you question these things, you say, “What do I want my life to look like? What are my good days like?” It allows you to opt out of these interventions while well-meaning that don’t tend to help except in edge cases. It allows you to actually have a longer, better life as a result.

I would add that the quality of life between now and the time you get to end a life is also enhanced by these conversations.

I think that’s right. A big theme in this project that was unanticipated when I started was the idea that I want people to make choices rather than default to actions. The world is very good at telling you how to behave. It’s very good at saying what you should do, and where you should be. As I like to say, I’m getting to the point where I want to do what I want when I want, with whom I want, and how I want. Even if that looks like the default, I’m okay with that as long as I choose it. What you’re suggesting is that asking that question allows you to make better choices, not for your end of life, but for tomorrow.

Yes. As a relationship coach, I often say that the American dream is a poor template for a rich relationship. I want to extend that to say that we don’t even have a dream for elderhood. Elderhood, as we experience it now, is unprecedented in history. In the 1900s, our average life expectancy was 46 to 48 years old. We’re living nearly twice that long, and we don’t have a dream of what it means after you don’t have to work unless you want to.

You don’t have children to care for, you don’t have elders to care for anymore. We have such a rich array of opportunities, but we don’t have any templates and very few role models for what that looks like. What I would encourage our readers to think about is what your dreams are in elderhood. It’s another whole phase of life that didn’t even exist for our grandparents.

To add to that, we don’t have songs about it. We don’t have sitcoms about it, except for the Golden Girls, which is no longer a show. We don’t have enough movies about it. We don’t have a cultural conversation around it. You’re left with recognizing the possibilities, asking the questions yourself, and conversing with people whose opinions you respect and those who care about trying to design a remarkable older age.

Be a good observer. Volunteer at Hospice. Look at what people who are a decade or two older than you are, what are they doing? Look for those people who are thriving. Scooch your chair up next to them and ask questions.

Find the people who are aging sexy, as I like to say.

In terms of the next steps I offer on my website, my business is called MindfulEndings.com. If you go to the get started page, the first box to check is “I’m a do-it-yourself or expect some of you.” Those are independent, and you can do them on your own. I’ve got all the resources that you need to get started. I’ve got places to access your state forms. I also highly recommend that you look at the five wishes, which is an alternative to the state forms that are valid in 46 states. It’s a little bit more narrative in its nature. It asks you more questions and gives you more to think about.

I like to tell people to use that as your sloppy copy, your shitty first draft, and write all over it and compile a portfolio of information. This is not only for your agent and the people who will support you but also for your future self, which will be ten years from now. Benchmark where you are today. With that link, I’ll send you those forms, on how to get to the five wishes. The conversation project is also another excellent resource to help you have the conversations, which can sometimes be hard for you or even harder for the people who don’t want to hear about you dying, about that possibility.

I have some guiding questions in there and instructions on where and how to file your documents. If you’re a do-it-yourselfer, that’s where to go. Although, I want you to think hard about that. Are you a do-it-yourselfer on something that’s this challenging? One of my first clients was a hospice chaplain who had had all the forms on her desk in a file for seven years. 5She was doing it day after day. It’s a hard topic.

What I offer with my workshops is guidance, experience, support, resources, a community for facilitated discussion, and a timeline and accountability. If you would like any of those things, check out my website. I’ve workshops scheduled every fall, but outside those times, I encourage you to bring your own crowd and do this work together with your people. I will schedule workshops for your group anytime you’d like to do that at your convenience.

Teri, this has been a rollercoaster of an episode for me in terms of emotion and learning, and now I have something on my to-do list. I thank you for your commitment to this important yet overlooked issue. Thank you for your vulnerability and for sharing your expertise with us.

It’s my pleasure. Thanks for being an advocate for good end-of-life planning. I appreciate it, Peter. Thank you.

Cheers.

 

Important Links

• Teri Ashley
• CaringBridge
• CompassionAndChoices.org
• Not Here By Choice
• Choosing to Die
• Judy Cornish
• DAWN Method
• A Complaint Free World
• Awe
• https://MindfulEndings.com/get-started
• https://EndOfLifeWA.org
• https://PubMed.ncbi.nlm.nih.gov/12965975
• https://CompassionAndChoices.org/resource/history-end-life-choice-movement
• https://ElderCare.acl.gov/Public/Index.aspx
• https://EndOfLifeChoicesNY.org/directives/dementia-directive

 

About Teri Ashley

Teri Ashley is a certified advance care planning specialist and hospice volunteer, a master educator/curriculum developer, certified life coach, and restorative justice facilitator. Her business, Mindful Endings was inspired in the aftermath of her husband’s 2017 death, ten weeks after he received a stage 4 cancer diagnosis.

Her mission is to inform and empower your end-of-life choices: Your life. Your values. Your plan.