18: Choosing Who Will Defend Your Wishes

You know that stress dream where you show up at school and the teacher announces a pop quiz and you are totally unprepared? And the teacher calls on you to stand up and asks you a question in front of everyone and your mind goes blank and the teacher is getting impatient and the entire class is staring at you waiting for your answer and you have no idea what to say? And then you get the feeling that everything is riding on this one answer and the teacher starts talking but you don’t understand a word of what they’re saying and then the teacher stops talking and you realize that you’re supposed to choose something but it seems like there are no good answers and you have no idea how to make a choice and all you can hear is a big clock ticking on the wall?

That would be a pretty awful nightmare, right? Thing is, there’s a real world version of that nightmare that is happening right now. People are under pressure to make decisions they feel totally unprepared for, to choose between options they don’t fully understand. And many of these choices are irreversible. In this situation, of course people are afraid to make the wrong choice. They fear that no matter what they choose, they’ll be judged or feel regret.

Where are these terrible choices happening? In hospitals and homes and nursing facilities all over the world. In the dream, it’s a school and you’re facing a teacher. In the real world, it’s a hospital and the person in the hot seat is someone you trust. The people watching aren’t classmates; they’re your family and friends. And you? You’re the test. You’re lying in the hospital bed, unconscious. You know the answers but no one can get them from you because you can’t talk. Let’s hope you told someone before you got knocked out cold. 

All over the world, right now, caring, loving people are being asked to make medical decisions for someone that is unconscious or can’t speak for themselves, decisions that should be based on knowing what that someone wants. Sometimes they know exactly what to do. Too often, they don’t have a clue. They get to this test and realize they only talked about the general outline or a series of checkboxes but they don’t have the kind of deep understanding that is needed in a medical crisis. They desperately want to get the answer right but don’t know what to do. And if they’re left wondering if they might have made the wrong decision, they could end up feeling regret for years to come.

What can put a stop to all this confusion and regret? Having clarity about what the unconscious person wanted. This is the purpose of having thoughtful conversations and completing an Advance Healthcare Directive. It’s one of the most important documents that any of us will ever fill out—but the vast majority of people still haven’t done it.

For the next two episodes, I’m going to talk about the Advance Directive, also known as Advance Healthcare Directive, Medical Directive, or Living Will. On today’s episode I’ll cover choosing who you want to speak for you when you can’t speak for yourself, meaning who should be your Health Care Agent. On the next episode I’ll talk about the kinds of options and decisions that I encourage you to talk about with your Agent, the kinds of things that get written into your Advance Directive. 

This is the fifth episode of the Death Binder series.

[MUSIC BEGINS]

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

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On today’s show, I’m going to focus on choosing your Health Care Agent, the person who will speak for you when you can’t.

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But before we get started, I need to tell you about the Death Binder. Throughout this podcast, I talk about a range of decisions and documents that I believe all of us need to complete before we die. These cover everything from what we want done with our bodies, to accessing our financial information, to how to manage our online profiles once we’re gone, and a lot more. Making these decisions and writing them down is an act of kindness for our loved ones. But only if they can find the documents after we die. I recommend collecting them all in one place, what I call a “Death Binder.” 

It can be confusing or overwhelming to know where to start, so I’ve created a handy template that’s broken down from what’s most critical to what’s simply helpful. To get access to the Death Binder Template, head over to my website, DyingKindness.com. When you sign up there, you’ll get the template and you’ll also get access to the Dying Kindness newsletter where you’ll get notified of workshops and other things to help you throughout the process of getting your affairs in order. It’s way easier to do all this in the company of others. Once again, that’s DyingKindness.com. Thanks for being here and for caring enough to do this work! OK. Back to the show.

[MUSIC ENDS]

Before we get into the thick of talking about your Health Care Agent, I want to address a misconception that many people carry. When I start talking with people about death and dying, they immediately make the assumption that they won’t need any of this pre-planning until they’re old and frail. Sadly, that’s not necessarily true. Many people die well before they’re in their 70s, even before getting to 50. And many others get into accidents or have illnesses that leave them incapacitated for a time. Even if they recover later, during the time that they were out of it, decisions needed to be made about their care.

So I hate to break it to you, but it’s magical thinking to act like you’re guaranteed a healthy life until you suddenly become old and frail and then die at home peacefully in your bed surrounded by all the people you love. That’s a lovely dream. And it does happen for some people, maybe even you. But it’s not guaranteed. And more often than not, that’s not what happens.

Also, if you make all your plans based on some imagined future self, they won’t be relevant if something unexpected happens and you end up unconscious tomorrow. So instead, I suggest completing your Advance Directive thinking instead about a five-year horizon, meaning base your decisions on the possibility of something happening to you that would render you unconscious sometime in the next five years. You’ll need to update it, sure, but updating is a lot easier than doing it the first time. Many of your hardest decisions are unlikely to change. So if you don’t already have an Advance Directive, set some time on your calendar in the near future to think about what you want. And then book time with the person you want to be your Health Care Agent to talk about your choices and what you’re asking them to do so that you’re both clear.

Now: Who should you choose to be your Health Care Agent? Let’s talk about that.

In the United States, when someone becomes incapacitated because of an accident or illness or heart attack or whatever, the default choice for their Health Care Agent is their legal spouse. If they’re not married, then the next option is their parents or siblings.

While these may be the default, they are not necessarily the best choices. To understand why not, let’s go over what a Health Care Agent will be asked to do.

Take a deep breath. We’re diving in.

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Let’s imagine that something has happened to you and you’ve become incapacitated. You’re lucky in that you’re in a hospital and your chosen Health Care Agent is there with you.

The doctor will talk with your Agent about what has happened and what your prognosis is. She will explain various options. If it’s unclear if you’ll survive some of the options or if they would result in massive tradeoffs, your Agent will be asked to decide whether or not to proceed. I’m talking about things like deciding whether or not to do a surgery that has a slim chance of success, or deciding whether or not to amputate a limb, or doing a procedure that might repair one thing while risking damage to another. If whatever happened to you damaged your brain in a way that you won’t recover from, your Agent will be asked to specify what level of life sustaining care you should receive. And if the only way to keep your body alive is through artificial means, your Agent will be tasked with deciding if and when to either withhold or remove that support.

Take a moment and imagine those scenarios. Pretty awful, right? Just thinking about that can be pretty emotional and stressful—and right now we’re just imagining it. It’s not real. But it can still feel intense.

Now imagine that someone you love is having to make those decisions on your behalf. If any of these situations were to become true, they would probably also be feeling a lot of emotions and feeling a lot of stress. And at the same time they would be getting medical information from an authority figure and feeling a time pressure to make the right decision. Actually, probably not just one decision. It’s more likely that they’ll be faced with a series of decisions spread over some time, whether hours or days. In some cases, they might also be confronted by family or other people who disagree about what to do. And let’s not forget that they also have their own lives with outside responsibilities that have nothing to do with what’s happening in your hospital room.

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That’s a lot.

How are you doing right now? Are you still breathing? If you’re holding your breath you should take a deep inhale and exhale. 

That’s better.

It’s useful to imagine this situation because it can help clarify the qualities you’d want in your Health Care Agent, who in your life you think would be up to the task.

The ideal Health Care Agent is:

• Someone you trust
• Someone who listens to you and who would make decisions based on what you want, not what they want
• Someone who is able to understand a medical situation or is able to ask for help in getting that understanding
• Someone who can push back if they face resistance
• Someone relatively near you geographically so that they be with you in person
• Someone with the ability to make arrangements to cover their own responsibilities so that they can be with you for an extended period of time
• Someone who would not collapse under the emotional impact of you becoming incapacitated

It’s that last one which is the reason that so many professionals say a spouse or a parent would be a bad choice. They are very likely to be the most emotionally overwhelmed by the prospect of their spouse or child being critically injured or near death. That level of emotion can make it hard to think, can overwhelm reason, or make them refuse to follow their loved one’s stated wishes.

It’s slightly counterintuitive, but often the right person to be your Health Care Agent is someone who has a little more distance. Sure, you want to choose someone that you’re close with and that you trust, but they need to have the ability to continue to think and hold firm in the face of difficult decisions or opposition.

Just to be clear: I’m not saying that spouses and parents are always a bad choice to be your Health Care Agent. Certainly many many have done an incredible job in the past and there are good reasons that this is the default. I’m just saying it’s a lot. And I’m suggesting that you take into account what you’re asking and the extra strain that it’s going to put on them, particularly if you expect any difficulties with other members of your family. Some people are up to the task. But some, simply, are not, no matter how much they love you. So just take some time to think about it from their point of view and see if you think they would be a good Agent for you. It’s a pretty special combination of skills.

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I actually think of Health Care Agents as like superheroes or guards in front of the throne or secret service agents. You have given them a mission to protect your desires and they agree to defend your choices against all attackers. They must remain level-headed enough to take in new information as the situation changes and adjust their responses accordingly without losing sight of their goal. As you go under, you can relax knowing that your defender is there and they will communicate your wishes to the best of their abilities. Agreeing to be your Health Care Agent is more than just a responsible act. It’s an expression of love and respect. They will defend you, and whether you live or die in the end, you’ll know that they’ve got your back.

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Feeling inspired? Or maybe daunted? What if you don’t know anyone who can fulfill this role? I’ll get to that. But I’m not yet done talking about the kinds of situations this person may need to address.

Asking someone to make decisions for you can be hard enough when there’s so much love that you’re expecting your family to feel overwhelmed with emotion. But what if the most likely emotion is negative?

Many people have no expectations that their family would honor their wishes. They either live lives that their families disapprove of, or come from families that never agree on anything and often fight amongst themselves. Sometimes decisions over what to do can be skewed by self-interest or fueled by long-standing grudges.

In these cases, simply saying that you want someone to be your Health Care Agent in your Advance Directive may not be enough. You should complete a Power of Attorney for Health Care. That’s a legal document that overrides whatever default a court would assign.

You definitely want to do this if the person you want to represent you is not someone who would be automatically recognized by the legal system, or who might be challenged by your family. This comes up most often with same-sex couples when the family is opposed to them. That’s not the only situation, though, of course. Legal challenges also arise when someone has a relationship after a divorce or being widowed but they’re not married, or when the family is opposed to a relationship based on race or age difference or being anti-immigrant or anti-disability or oh so many reasons that people are mean to each other.

Also, if you’re someone who often gets steamrolled, you need to find someone who will take the time to really listen to you and get to know what you want. (And if you’re acting as someone else’s Health Care Agent, be sure that you’re doing more listening than talking.) Many of us are in relationships or families where we regularly deprioritize what we want in favor of others’ needs. This is not the time to do that. When you’re filling out your Advance Directive, you should allow yourself to truly consider what you want. Sure you need to take into consideration the impact that your choices will have on others, but don’t go so far that you stay silent and suffer unnecessarily while you’re dying.

[CHIME]

Another crucial thing that your Health Care Agent may need to do: stand up to prejudice and bias. I especially want you to think about this if you’re disabled, trans, a person of color, poor, or an immigrant. I don’t have to tell you that there’s bias in the medical system and it’s generally not in your favor. You might not be offered treatment that others are offered. Your life may not be valued in the same way that others are. Your doctor may dismiss your capacity to understand or might misinterpret what is for you a cultural norm. Studies have shown that there are even race-based differences in whether or not a patient’s pain is taken seriously. Choose a Health Care Agent who is able and willing to defend you against being dismissed in this way.

[CHIME]

So… a Health Care Agent (aka the superhero defender of your final days) needs to be:

• Able to listen to you
• Able to ask for what they need to understand and implement the choices before them
• Able to stay clear-headed enough to make big decisions in the face of a stressful and emotional situation
• Willing to do what you requested even if it doesn’t match what they would choose for themselves
• Willing to defend your choices in the face of opposition from your family or the doctor
• Operating from a place of care and respect

Hopefully, you have a close friend or family member who fits this description. If you don’t, choose someone who at least will listen to you and talk with them about the kind of support they’d need if this situation would ever arise.

Sometimes when there isn’t anyone immediately obvious, some people want to name more than one person. This isn’t a great idea because what happens if they don’t actually agree? Still, sometimes it’s easier to have a group take on this level of responsibility than put it all on one person. Maybe you and a group of your friends agree to be each others’ Health Care Agents. This can work if you all get together for some pretty in-depth conversations where you each share what you want so you all have a deep understanding of the kinds of things that matter to each one of you. Even then, I’d suggest having some kind of mechanism that would determine which friend would be the final decider for each person.

[CHIME]

Because these conversations can feel hard, some people want to name their doctor on their forms. This is not a good idea at all. Doctors may face situations where their self-interest is in conflict with what you’d want, or face opposition from family. Do not choose your doctor as your Health Care Agent.

[CHIME]

Lastly, I realize I didn’t say this before: Everyone over the age of 18 needs to have these documents in place. Under 18 your parents or legal guardians have the authority to make these decisions. The wishes of a minor are subject to the decisions of parents or legal guardians. Once you’re 18, though, you should decide for yourself what you want.

I know choosing a Health Care Agent can be tough. But it’s important. And even more important than just naming someone is being able to have a solid conversation with them. I suggest going back and listening to Episode 14, “Getting the Conversation Started,” for tips on how to do that.

[MUSIC STARTS]

That’s it for today. If you know someone you think could benefit from this episode, please share it with them. That’s the best way you can help me on my mission to make our deaths kinder to the ones we’ll leave behind. If you want to read the transcript or get the Death Binder Template, go to DyingKindness.com.

The theme music is by Blue Dot Sessions. Everything else was done by me. I’m Cianna Stewart, and I’m going to die someday, but hopefully not before I get to do some of the things that got canceled in 2020.

[MUSIC ENDS]

Today’s death reading is the story of Yakuo Tokuken who died in 1320 at the age of 76, as retold in the book “Japanese Death Poems Written by Zen Monks and Haiku Poets on the Verge of Death” compiled by Yoel Hoffman.

First, the poem:

[BELL]

My six and seventy years are through.

I was not born. I am not dead.

Clouds floating on the high wide skies

The moon curves through its million-mile course.

[BELL]

And now the story:

Two days before his death, Yakuo called his fellow monks together and said, “The words of a man before he dies are no small matter. This is a barrier that all must pass through. Tell me each of you what you think about that.” The monks answered in various ways, and Yakuo neither approved nor disapproved. The next day he ordered his pupils to burn his body and forbade them to hold an elaborate burial ceremony. “Tomorrow morning,” he said, “I shall eat the rice porridge with you for breakfast, and at noon I shall go.” The following day at noon he wrote his final words, threw the brush from his hand, and died sitting upright.

[BELL]