Listen: You Should Have an Advance Directive
It’s hard to talk about end-of-life care. You should do it anyway.
On this episode of Social Distance, James Hamblin and Katherine Wells talk with Edo Banach, the president and CEO of the National Hospice and Palliative Care Organization. They discuss how to create an advance directive and how to broach the topic in conversations with loved ones.
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What follows is an edited and condensed transcript of their conversation.
Katherine Wells: What exactly are advance directives, and who should have one?
Edo Banach: In a nutshell, an advance directive says what medical treatment you want done or not done in the event that you aren’t able to communicate what you want yourself, and it says what person you want making medical decisions for you. And I recommend that everyone has one.
Wells: How granular do they get?
Banach: It depends on how granular of a person you are. Take me, for example. My advance directive just says, “I’m naming an agent. I’ve had a conversation with the agent. The agent knows what my wishes are.” All I need to say is, “My agent is empowered to make decisions for me.”
Wells: If it’s not too personal of a question, who is your agent?
Banach: Well, agent one is my wife. But if we were in a wreck together, it’s my brother. So you have a backup agent. You have to think of the worst-case scenario. The problem with the whole advance-directives conversation is that when people usually hear it, they think about Terri Schiavo; they think about what happens when someone’s in a vegetative state or at the end of their life. But that’s not usually how advance directives come up. They usually come up when someone’s lost their ability to make a decision either momentarily, like if they’ve been struck or stunned, or permanently, like if they have dementia and can’t make decisions anymore. When that point happens, who do you want to make decisions for you? If it’s the system making the decision for you, like the hospital or the nursing home, they’re going to make the decision that protects themselves first.
James Hamblin: When you say “protected,” you mean that the hospital system is going to default to a place where they can’t be accused of withholding care, right? It’s about prolonging life rather than providing comfort.
Banach: Exactly. Most people don’t want to prolong life at all costs. Most people say they want to be at home with their loved ones and in the least restrictive, most comfortable environment.
Wells: But it’s not that simple, right? There’s lots of gray area there.
Banach: Right. I’ll give you a good example. In her advance directive, my mom specified that she wanted to be on a ventilator, if it ever came to that. But in the context of COVID-19, she said, “You know what? I’ve been doing some research and I’ve realized that people with COVID-19 who are put on ventilators who already have pulmonary problems, like me, usually don’t make it, so I don’t want a ventilator for COVID-19.”
But for me, I’m 44. Maybe I do want a ventilator if I have COVID-19, because maybe I’ll make it. The problem with getting too granular is that you can never foresee everything that might happen or advances in medicine that might take place. That’s the argument for just making sure your loved ones know what you want.
Wells: How do you get one?
Banach: If you go to our website, you’ll be able to download your state-specific form. Once you have an advance directive, you should digitize it and get it into your medical records. If it’s under your mattress or in a safe-deposit box, no one’s ever going to see it. You don’t need a lawyer. I’m a lawyer, and I think a lot of lawyers convince people that they need a lawyer to execute advance directives. You absolutely don’t. This is not rocket science.
Wells: What’s a do-not-resuscitate order? Is it the same as an advance directive?
Banach: Do-not-resuscitate orders are part of advance directives. Let’s say I’m 97 years old. Do I really want them sticking something in me, sending me to the hospital and possibly dying there? The answer’s probably no, because I may not make it, and if I do, my family might not be able to visit me. If what’s important to you is receiving care in the home and being with your loved ones, that’s not going to be possible. Once you get on that ambulance, you may not be coming back for quite a while.
In your advance directive, you can put No. 1, do not resuscitate, and No. 2, call Betsy. She is my health-care proxy. You’ve talked to Betsy. You talked to her every year at Thanksgiving and you update her about what you want.
Wells: I imagine a lot of people don’t have advance directives because it’s uncomfortable to think about and talk about.
Banach: Absolutely. But the thing that we’re seeing now with COVID-19 is that what once seemed so far away is close to home for a lot of people, especially if you’re in a place like New York. I want this to be an impetus for people having this conversation.
Wells: How do you have this conversation? How do you bring it up with Betsy at Thanksgiving?
Banach: If it’s your parents, for example, you say, “Look, hey, Dad, if something goes wrong, who do you want to make a decision? If you don’t empower me or someone else to make the decision, then the government or the institution is going to make the decision.”
Hamblin: And then he says, “I’m going to be fine. Everything’s okay. Don’t worry about me. Pass the gravy.”
Banach: “Yeah. But you know what? Here’s the deal. It’s not about you. Because you know what? You’re not aware at that point. It’s about me and it’s about Mom. And it’s about, you know, brother two and brother three. We’re going to end up fighting with each other over what your wishes are.”
Unless you really want your whole family to fall apart, as sometimes happens, you’re going to have this conversation. What you’re doing is letting people off the hook. You’re saying very clearly, “This is who I am; this is what I want.” Take out your smartphone. Do a video selfie. Say, “My name is Edo Banach. These are my wishes.” So if it ever gets to a debate over what I wanted or didn’t want, that’s clear.
Hamblin: The main issue is that we don’t want to have this conversation, especially right now, when people are genuinely scared and alone and you’re calling them on the phone sounding like the harbinger of death. Is there a resource where people have scripts for how to approach this conversation?
Banach: There are a couple. Our website has a decision guide for COVID-19, and it also has resources for how to have a conversation about advance-care planning in general. There is also a group called the Conversation Project, which aims to facilitate these kinds of conversations. Generally speaking, social workers are better at having these kinds of conversations than physicians, doctors, nurses, or lawyers. If you have any questions, those are always good resources.
Wells: I don’t have an advance directive. I don’t know anything about any of my family members and wishes. In my case, the issue is not that I think my parents would not be open to the conversation. For all I know, they have advance directives. The issue is that I don’t want to have that conversation, because it means acknowledging that they will die at some point. Any advice?
Banach: I would say the earlier you do it, the better. I wouldn’t frame it as an end-of-life discussion at all. End of life is grim and painful to imagine. But getting run over by a bus is possible too. A lot of people die that way. I think the right way to sort of frame it is, just in case. Especially with COVID-19, you could be fine today and not fine tomorrow. “Out of curiosity, do you have one of these things? I know it’s painful, but can we just sit down and have this discussion?” My best advice, though, is to do it all together. Whatever unit that you are, do it all together so you’re not picking on the people that are older.