19: Which Forms? When? Living Will, DNR, POLST, Advance Directive

Here’s the thing about death: People die in all kinds of different ways. I know that’s not news to you, but still. Just about every time I talk about dying, I find that people always seem to expect the same kind of death: being elderly and frail and dying from some vague thing called “old age.” Even people who have known peers who died young have this in their minds. Heck, even I keep acting like I have all kinds of time left. Sure I might be around for a few more decades. But there’s no guarantee. 

I mention this because the assumption that we’re not going to die until we’re old really affects our willingness to do what’s needed for death planning. If we think we have years to fill out the forms, then of course we’re going to put it off. It’s hard work and can feel depressing or scary. There’s always something else that feels more urgent. I know I say it all the time, but we really can’t wait because none of us knows when we’re going to need it, and sometimes waiting can mean it’s too late.

We could get into an accident while we’re young. We could get a terminal diagnosis and become overwhelmed with everything that goes along with that. If we’re lucky, we get to be old. But then we might be too close to death to be able to think about it calmly, if we retain the ability to think clearly at all.

And seriously: Filling out a form will not actually make your death come any sooner. Who knows? It might be like that thing where it might or might not rain so you decide to bring an umbrella and end up joking that of course it didn’t rain because you had an umbrella and the next day you leave your umbrella at home and then it rains. Filling out these forms is like packing your umbrella. You may not need it but if you do, you’ll be glad you have it.

I admit that it seems crazy that we need forms to say how we want to be treated while we’re dying, but it’s true. There are forms. Multiple kinds of forms: living will, power of attorney for healthcare, do not resuscitate order, advance directive. And advance directives go by slightly different names depending on where you are: healthcare directive, personal directive, medical directive, advance care plan.

All these forms are important. Each one serves a different purpose and is needed at a different time—but those needs overlap. It can get confusing.

In fact, as I was doing the research for this episode, I learned that I was wrong about a couple of the forms. Here I am thinking and reading about this stuff all the time and I didn’t fully get it! I would not blame you if you’ve stalled out making your death binder. It can get both emotional and confusing. What a sucky combination. And it doesn’t help that some of the advice out on the internet is at best incomplete and at worst wrong.

So I’m going to try to sort things out for you. I’m going to relay what I’ve learned to the best of my ability. I’m going to go over the function of each form, when you’d need it, and who should have what in place. You’ll be happy to learn that you may not need all of them right now. There are a couple, though, that every adult needs and I’m going to explain why.

Today’s episode is about what forms you need when. This is the sixth episode in the Death Binder series.

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

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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, go to DyingKindness.com. When you sign up for the template, you’ll also get access to the Dying Kindness newsletter where you’ll get notified of workshops and other things to help you throughout the process of getting your affairs in order. Once again, that’s DyingKindness.com. Thanks for being here and for caring enough about your people to plan ahead! OK. Back to the show.

I’m guessing that you already know that the process of death planning includes completing forms like:

• Living Will
• Medical Power of Attorney
• Health Care Agent designation
• DNR or Do Not Resuscitate form
• POLST or Physician Orders for Life Sustaining Treatment
• Advance Directive, Advance Healthcare Directive, or Advance Medical Directive

If you’re in Canada, what I call an “Advance Directive” is usually called an “Advance Care Plan.” In England, the same information might be referred to as a “Personal Directive.” In the US, every state has their own version of the Advance Directive, often with a slightly different name. More on this later.

Are you already glazing over just hearing the list of names? Sorry about that. Let me break it down. 

First, we need to consider different stages of dying and types of medical situations we might find ourselves in, for example:

• Having no terminal or life-limiting illness, and no signs of cognitive decline, meaning no reason to think that we’re going to die in the immediate future (this is how most of us are for most of our lives)

Then again, we might

• Have signs of cognitive decline
• Develop a terminal or life-limiting diagnosis
• Become physically frail
• Become temporarily unable to make or express our own wishes for care, for example due to surgery or being in the ICU for COVID
• Become permanently unable to make or express our own wishes for care, for example due to brain injury or Alzheimers
• Or having our body in active decline, or actively dying, while still cognitively aware and able to express our own wishes

Can you see how each of these situations differs a bit and would need different things? You might be physically healthy but can’t speak. You might be able to speak but have dementia. You might be temporarily unconscious but expected to recover. You might be a hundred years old sporting fabulously fashionable outfits and still writing books and making TikToks with your great-grandson. Who knows?

Point is, we can’t know. So we need to plan ahead and fill out those forms. Before I forget, I need to remind you that I’m not a lawyer or a doctor or whatever. I’m just someone who’s going to die and who likes to share what I’ve learned. I suggest you do your own research and talk with a lawyer before you sign anything that’s legally or medically binding.

The term you may be familiar with is “Living Will.” Basically, it’s a description of how you want to be treated if you end up in a situation where you need others to care for you and you can’t tell them what you want. The fancy word for that is “incapacitated.” That’s the technical explanation of a Living Will, but the real power is that in the process of completing it you get clear on what you value in life. 

For example: You’ll need to consider things like what would or would not make it worth it to you to extend your life. You’ll need to think about your levels of tolerance for different kinds of suffering. You’ll need to think about those closest to you and what help you’re willing to accept from them and what you’re planning to ask of them. You’ll have to imagine what kinds of loss you’re willing to accept, because there will always be loss.

Meaning: You’ll need to get clear on what you value. And thinking about your values can actually start to affect how you’re living your life right now. So yes, it can get overwhelming. But it can also be awesome and even life changing.

To repeat: A Living Will is for if you’re ever in a situation where you can’t speak for yourself, not just when you’re dying. It’s even useful if you’re temporarily incapacitated and are expected to recover. There’s no universal format for the Living Will. It can be pretty informal, and many templates for this are available online. In some places, the Living Will can even be verbal, but really you should write it down in case there’s any confusion or challenge.

Now, who is the person who makes sure that your Living Will is respected? That person is usually called your Health Care Agent or Proxy. This person can be named in the Living Will but in some places there’s a separate form for that.

When I say that the Living Will and naming your Health Care Proxy are informal, I mean that often they can be considered complete if they just have your signature on them without needing to be reviewed by a lawyer or be notarized or even witnessed.

Because of this informality, your Living Will can be left open to being challenged, like if someone suspects that you were pressured into something or even if any member of your family disagrees with what you wrote. Also, just saying that you want X person to be your Health Care Proxy is often not enough to authorize different kinds of medical treatments, and definitely not enough if you’ve chosen a Proxy who is not your legal spouse. (If you want to know more about how and why to choose someone to be your Proxy, I suggest listening to episode 18 where I cover that in more depth). 

To protect your choices against legal challenges, you should have an Advance Directive and a Medical Power of Attorney. As I’ve said, these can have different names, but using these terms will probably get you there when you look it up in your state or country.

The Medical Power of Attorney is a formal signed and notarized document that names your Health Care Proxy and then goes a step further by having witnesses or a notary verify that you were in your right might and that you signed this of your own free will.

Similarly, the Advance Directive contains the information that would be in your Living Will plus naming your Health Care Proxy, and then it’s made legal through witnesses or a notary or a lawyer’s signature, depending on where you are. Because this is a legal document, you’ll need to be sure that you’re getting the right version of this for where you live. Ask your lawyer for that, or check with your state or country’s health department. Oh, if you divide your time between different states or countries, you need to complete one for each of those locations. And if you’re often traveling outside the country, you should file your Advance Directive with your state or national registry. You can look them up online, but I’d suggest talking with your lawyer before uploading your information.

Wait. I still haven’t told you when you’d need these forms. Short answer is: Today. Right now. All of us over the age of 18 need to do these. It may come as a surprise to you parents, but when someone turns 18, their parents no longer have the legal rights to access their health care information or make decisions for them. So. Every adult needs to have an Advance Directive and Medical Power of Attorney, no matter how many years we think we have left.

In fact, I suggest that you fill out your Advance Directive as if something might happen in the next five years. Don’t do what everyone does and complete it for your hypothetical elderly self if you’re far away from that reality. You don’t know what will happen between now and then. By the time you get there, you might be living somewhere else or rely on different people or shift your values or want new technologies. You just don’t know what your life will be like then. But you do know what your life is like right now. Make your choices based on your life as it is right now. Think about who and what is important to you right now, and complete an Advance Directive with a five year time horizon.

OK I’m still not done with the types of documents. If you are frail, or have a terminal diagnosis, then you have a couple other forms to consider. The one we hear about the most often is the DNR, or Do Not Resuscitate order. The technical explanation is that it’s a form that says if your heart stops beating or you stop breathing, that you do not want to be resuscitated. No CPR, or intubation, or electric AFib paddles, or medications like epinephrine for emergency resuscitation. In plain language, that means the DNR kicks in if you die, and it tells everyone not to try to bring you back. So the situation to think about for the DNR is: You’re already dead; do you want them to try to bring you back to life?

The reason I’m saying it bluntly is because I hear a lot of healthy people who are trying to be death positive say that they’ve signed a DNR, and I’m not sure that they’ve really thought this through. If you’re one of them, let me tell you why I think you might not want it.

In general, a DNR is totally great when someone is frail or close to the end of life for whatever reason and there’s no reasonable expectation that they’d have much life left after being resuscitated. Putting someone through the process of doing CPR or putting in a breathing tube, etcetera, can actually end up feeling quite cruel if they end up with more complications than they can reasonably expect to recover from. What kinds of complications? I’m talking broken ribs, collapsed lungs, the inability to talk, possibly even brain damage. These are the kinds of complications that can result from the process of resuscitation itself, and they would be on top of whatever the person was already dealing with before that. If your system is frail, then you’re not likely to get the kind of bounce-back-from-death situation we see on TV. Also, the process of resuscitating someone generally doesn’t match up with most people’s idea of a peaceful death, and sometimes making choices to keep death peaceful can be the priority. In those cases, you want a DNR. Some places even prefer the term AND instead of DNR, meaning “Allow Natural Death,” to make this more clear.

The reason I don’t think that all death-positive people should have a DNR is because when someone is reasonably healthy or maybe even has a life-limiting illness but isn’t that close to death, they are likely at lower risk of getting these kinds of complications. They’d have a better chance at recovery afterwards. We’ve seen this throughout the pandemic when someone manages to come off a ventilator and survives severe COVID. The use of a ventilator is a last-ditch effort, and sometimes it works and the patient recovers. If that patient had a DNR in place, they might not have been put on a ventilator in the first place. It’s a tough choice and these might be edge cases, but it’s still something to consider.

It’s not for me to say that one way or the other is right for you, but it’s something to think about carefully. You should talk over your particular situation with your doctor, whether you definitely do or do not want a DNR. Lastly, this is also a document that can’t be ethically completed if you’re already dealing with significant cognitive impairment from something like Alzheimers. If you’re at risk for that, have these conversations early and do them more than once so that those around you can be sure of what you wanted. You need a doctor to sign the DNR or AND anyway so ask yours to set aside time to discuss it. 

So: The Do Not Resuscitate order is a useful document and it’s not something everyone needs right now. It’s basically for when you’re already close to death or when your body is so weak that your expectations for full recovery are low.

If you or someone you know decides that a DNR is the right thing for them, here are a couple more things to know: You may have heard of situations where someone had a DNR but emergency services were called anyway and the DNR was ignored. This can happen for all kinds of reasons. Sometimes it’s because no one knew that they had a DNR, or that whoever was there when the patient collapsed called 911. A couple ways to avoid that: If the patient is bedridden, the DNR should be taped up on the wall beside the bed. It’s common to put them up on the refrigerator door or attached to the wall next to a landline phone. If the patient is still mobile, they should get a medical alert bracelet from their doctor that indicates they have a DNR.

As I mentioned, the DNR is for when you’ve died. But what about all the kinds of treatment choices that happen while you’re still alive but you’re aging or dying? I’m talking about things that are not about emergency resuscitation but are about quality of life and interventions to extend life like giving antibiotics or using a feeding tube.

Your choices about these kinds of interventions would go into your Advance Directive, but sometimes that’s not sufficient. Sometimes an Advance Directive gets challenged or ignored because the family disagrees or the care facility is worried about getting sued or there’s some question about someone’s state of mind while they were completing the Advance Directive. 

It’s because of these kinds of situations that a new form emerged: the POLST, or Physician Orders for Life Sustaining Treatment. This is the one you’re least likely to hear about. It’s not even honored everywhere, but it can be a powerful tool where it’s available.

Basically, the POLST confirms that the patient has had conversations with their doctor, and the doctor confirms that they don’t want resuscitation or life-sustaining measures, and that they were mentally capable of understanding the implications of this decision. That’s why the PO of POLST stands for “Physician Orders.” The POLST has to be signed by a doctor to be valid. That doctor is specifying what kinds of life sustaining treatment their patient does or doesn’t want, and under what circumstances. If you want to be really sure that someone doesn’t have to go through extreme measures at the end of life, look into getting a POLST, particularly if they’re in a care facility or hospital where doing whatever they can to keep someone alive is the norm. Sometimes getting a POLST can be the best way to give someone a peaceful death at the end of a long struggle. Talk with your doctor if you or a loved one is in a situation where they might need this.

So to sum all that up:

• Everyone over the age of 18 should specify their wishes and designate a health care proxy, ideally with an Advance Directive or Living Will and Medical Power of Attorney
• If you’re close to the end of life or frail and the risk of complications from resuscitation would not be worth it, that’s when you want a DNR or Do Not Resuscitate order.
• If you’re close to the end of life and don’t want to artificially extend your life and you want to be sure that your wishes are honored (and it’s available in your area), get a Physician Order for Life Sustaining Treatment, or POLST.

I know I keep going on about these documents, but they are what can have the greatest impact on how much stress your loved ones will experience if they ever need to make decisions on your behalf. There are so many stories out there of people who continued to second-guess their actions, and of families who fought with each other over what to do. I firmly believe that you should do what you can to keep your family from becoming one of those stories.

I hope this episode helped sort this stuff out. If you know someone who’s feeling confused by this process, why don’t you share this episode with them? Then again, if you’re still confused or have something you want to add to this discussion, please send an email to dyingkindness@gmail.com. Or you can go to my website and click the microphone button to send a voicemail. Just go to DyingKindness.com and look in the bottom right corner for that button.

In the next episode, I’ll go deeper into the kinds of decisions and situations that you can cover in your Living Will or Advance Directive. It’s not just about medical choices. It’s about your values and an expression of how you connect with others. I’m looking forward to sharing that with you because I’ll be covering a lot of stuff that I don’t often see discussed online. Be sure to listen to that one!

[MUSIC STARTS]

That’s it for today. For the show notes, transcript, related books, links to the community discussions, and more, go to DyingKindness.com. You can also find ways to support the show there.

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. Right now too many people in this world are dying at the hands of others and I dearly hope that we can change that. Because who doesn’t want the chance to die of old age?

[MUSIC ENDS]

Today’s death reading is “The Man He Killed” by Thomas Hardy

[BELL]

Had he and I but met

By some old ancient inn,

We should have sat us down to wet

Right many a nipperkin!

But ranged as infantry,

And staring face to face,

I shot at him as he at me,

And killed him in his place.

I shot him dead because—

Because he was my foe,

Just so: my foe of course he was;

That’s clear enough; although

He thought he’d ‘list, perhaps,

Off-hand like—just as I—

Was out of work—had sold his traps—

No other reason why.

Yes, quaint and curious war is!

You shoot a fellow down

You’d treat if met where any bar is,

Or help to half-a-crown.

[BELL]