Death is one of the few sure things in life, but few of us talk through how we want our final days to go, or who we want to help us through them.
Formalizing those things in an advance directive may be easier and more important than you think.
Many of us hope we’ll just slip away in our sleep. But Dr. Amy Gennari, interim chief of geriatrics at the University of Vermont Medical Center, says typically, the body fights dying. And palliative or comfort care needs to be aggressive.
"It is very intensive. It is lots of medications sometimes, it is mixing and matching medications. It is getting the right environment. That's why the advance directive is really important," Gennari says. "Because, we want to intervene. I mean, especially as geriatricians and palliative care doctors, this is what we do. We try to help people have a good, peaceful death."
But data shows two out of three Americans don’t have an advance directive.
Eva Zivitz wishes more did. She’s a registered nurse who coordinates the palliative care program at Rutland Regional Medical Center, and a big part of her job is helping people navigate end of life issues.
“The number of families that I see struggling when someone has a sudden illness, especially when it's critical, and they're in the intensive care unit on machines, and there's never been a conversation, there's nothing in writing, and they have no idea what to do," Zivitz says. "The burden of those decisions is huge.”
Research shows having an advance directive greatly reduces that decision burden and lessens depression following a loved one's death.
Zivitz and other health experts say to think of it as a gift you can give to your loved ones.
But if creating an advance directive is something you’ve been avoiding, here are some tips on how to get started.
First — and this may surprise you — it’s not just something older people need to think about.
Serious injuries and illness can happen to anyone, says Zivitz. “In general, I feel that anybody over the age of 18 should consider at least identifying a person that they would trust to speak for them if something were to happen and they were in a position where they couldn't speak for themselves.”
She says having a trusted agent who knows what you do and don’t want medically, and who can speak on your behalf if you can’t, is the most important part of this whole process.
And Zivitz says they don’t have to be a family member. “What you're really looking for is someone who knows you well, someone who could act to interpret what your wishes might be if a situation comes up that you haven't discussed, and someone who's willing to advocate for what you yourself want, even if it differs from their own personal beliefs.”
Second: Don’t assume that whoever you choose will just know what you want. Zivitz says if you ask someone or are asked yourself to be a health care agent, sit down together and talk. “When I'm asked — and I'm actually currently the agent for nine or 10 people — I want to have a conversation with the person first. ‘Let me know what's going on with your health. Let me know what you're thinking first before I agree to do it, so that then I can feel comfortable knowing I can advocate for you.’”
Not sure how to start this conversation? Try one of these:
- I was thinking about what happened to Aunt Jesse and it made me realize some things.
- I need to think about the future. Will you help me?
- Even though I’m OK right now, I’m worried that something may come up and I want to be prepared. Can we talk about some things that matter to me?
Once you’ve got a health care agent, and a backup, you can move on to step three.
“The rest of an advance directive,” says Zivitz, “whether you call it a living will or use another type of form with a different name, is just a way of guiding that person. Putting something in writing to help the person who's making decisions have something to rely on if they have to make decisions for you.”
Every state handles advance directives a bit differently. In Vermont, you don’t need a lawyer, a notarized signature or an official form. You can write your advance directive on the back of a napkin if you want to. Just make sure you include your agent's contact information and sign it in the presence of two witnesses who are not family members and not your agent. Once you do that, it’s a legal document.
If you want a ready-made form, the Vermont Ethics Network has an assortment of advance directive forms in 14 different languages that you can download. Other organizations offer advance directive forms for other states.
Experts recommend going over the forms with your doctor, as they can talk over different medical scenarios that may come up. For instance, Gennari says some of her patients have told her it’s important that they die at home. Others have told her that for religious reasons, they don’t want any medications — nothing. Others have told her they want everything and to be kept alive at all costs.
Gennari says it’s all about figuring out what living means to you.
“I tend to tell my patients to ask themselves, 'What matters most in terms of, you know, my happiness, my interactions with others? What is it that matters most to me? And where would I draw the line of saying, Wow, if I didn't have the ability to do X, then life really wouldn't be worth living, and I'd want to be focusing more on just keeping myself comfortable and getting ready for the dying process?'"
Once you’ve chosen an agent and filled out your forms, make several copies. Keep the original and give a copy to your agent, and one to family or friends included in the process. Your primary care doctor should get a copy, and mail a copy to your local hospital so they can upload it into their electronic medical record. You should also register your advance directive with the state — it’s a free process.
And don't forget to revisit this issue every five years or so, because your wishes and who you want as your advocate may change.
More from Vermont Edition: Financial planning for death: Vermont experts share where to begin
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