10 Questions to Help You Plan for the End of Life

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4 days ago

Credit - Photo-Illustration by Chloe Dowling for TIME (Source Image: ugurhan/Getty Images)
Talking about death doesn't have to be morbid. If you approach the conversation the right way, 'it makes us more awake to our lives,' says Dr. Shoshana Ungerleider, founder of End Well, a nonprofit that aims to change the way people talk about and plan for the end of life. 'When we avoid this discussion, we rob ourselves of one of life's most clarifying forces—and that's the awareness that our time is finite.'
There are other benefits to planning ahead. Research suggests that the majority of people don't get the end-of-life care they want: While 80% would like to die at home, for example, only 30% do. Ungerleider has found that those who experience the most peaceful deaths tend to be the ones who have had ongoing conversations with themselves and their families about their wishes, including their values, fears, and hopes for how they want to be remembered. These discussions 'should be as common as financial literacy,' Ungerleider says (another topic people too seldom discuss). 'Embracing mortality is one of the most life-affirming things you can do.'
Ideally, these conversations should start in early adulthood, around age 18, and continue as the years progress and life evolves. We asked experts to share 10 essential questions to ask yourself—and your loved ones—to plan for the end of life.
'Who is your decision maker?'
If you're no longer able to make your own health-care decisions, someone else needs to do it for you. Every adult has the right to designate who they want that person to be—and if you don't do it, your state will. 'That's the most practical and tangible question and decision that everybody needs to think about,' says Paul Malley, president of Aging with Dignity, a nonprofit that created the Five Wishes advance directive, a simplified legal document that helps people express their preferences. Choose someone who knows you well, cares about you, and is adept at making difficult decisions, he advises.
'What's your guidance for life support?'
If you were approaching the end of life, what kind of medical treatment would you want—or prefer to be spared from? Your answers will likely vary depending on the circumstances, Malley points out, so think through some of the most common ones: when you're close to death; in a coma and not expected to wake up or recover; or suffering from permanent and severe brain damage. You should specify exactly what kind of procedures, devices, and medications you want, and which you don't want.
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The way you answer this question will likely be different at age 45 compared to age 85. Malley suggests revisiting your plan at least every five years, as well as any time there's a big change in your health.
'What makes you physically comfortable?'
Everyone wants to be treated with dignity at the end of life. To help ensure that happens, share your guidance for what family members, doctors, and nurses can do for you. 'Things like, 'I want a cool, moist cloth put on my head if I have a fever,'' Malley says. ''I want my hands massaged with warm oils as often as they can be.''
When Malley talked about his mom's end-of-life wishes with her, she said she didn't want to be massaged all over her body, because it would make her ticklish. He asked if she might enjoy hand massages, because she always loved manicures. 'She said, 'Oh, that would be wonderful,'' he recalls. 'So when my mom was nearing the end of her life with cancer, we were able to take very good care of her hands.''
Making these wishes clear is like 'giving an instruction book to the people who love you about how to take good care of you,' he adds, instead of leaving them to hope they're doing right by you.
'Where are the important documents?'
Always ask your family members if they have a will or trust—and if they don't, it's time to change that. It's also a good idea to talk through bank accounts, investments, and passwords, says Rebecca Feinglos, a certified grief support specialist and founder of Grieve Leave, a community that provides grief support. Make sure you know who their lawyer is, too. 'It's better to ask on the front end, even if it's uncomfortable, because if it reveals that something isn't done, you can get it done,' she says.
'What would a good day look like for you?'
Ask this question over and over again—of both yourself and your loved ones. You might be surprised at the answer. Feinglos' grandmother, for example, said it was going shopping, or sitting at home and watching the birds out the window. When she couldn't physically shop anymore, Feinglos brought the impromptu fashion shows to her.
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Understanding what contentment looks like allows you to make your loved ones' days as happy and fulfilling as possible. Keep in mind that 'a good day looks different over time,' Feinglos says, especially with age and illness progression.
'What possessions matter the most to you, and what do you want to happen with them?'
Feinglos' late father was a world-renowned mineral collector, and leading up to his death, the two discussed his wishes for his collection. 'We knew what he wanted,' she says, which enabled the family to donate their dad's most prized possessions to a Harvard museum.
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Your loved ones might not have a museum-worthy collection, but chances are they're holding onto something else that matters to them dearly.
Feinglos' grandmother, for example, cherished a special silver pocketbook. 'I only knew it mattered because we had those conversations, and she was like, 'I really want you to have this,'' she says. ''Go get it and let me tell you about it.'' In Feinglos' own will, she specifies that two of her best friends are responsible for going through all her clothes and purses. 'I know they'll understand how much they matter to me, and that they'll appreciate them,' she says.
'What do you want your funeral or memorial to be like?'
This can feel particularly tough to talk about—but it's 'critical' to ask your family members for their wishes, and to share your own, Feinglos says. You should also discuss what you want to happen with your physical remains. 'If you don't have those conversations, you're trying to guess what that person would have wanted, and it feels really uncomfortable," she says.
'When you think about the future, what worries you the most?'
Maybe the answer is becoming a burden to family members, dying in pain, or being forgotten. 'Our fears show us our values,' Ungerleider says. Naming them offers your loved ones the opportunity to figure out how to alleviate what you're worried about—while providing you with a sense of comfort and security. Aim to be as vulnerable as possible, even if it's hard: 'If you can let yourself go there—even tiptoeing into some of these discussions—it can allow you to know the people in your life even better, which can be inherently meaningful,' she says.
'What kind of interactions do you want to have?'
If death seems imminent, do you want people with you? 'Do you want them to play music? Do you want pictures of your grandkids? What name do you want to be called?' Malley asks. 'Do you want to be visited by a chaplain or your priest or your rabbi or your faith leader?'
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Malley recalls one woman who described her dad as the most outgoing person she had ever met. She assumed he would want to be surrounded by all his friends in his final days—but he said he wanted only immediate family. 'We all do the best we can to guess what our loved ones would want,' Malley says. 'But if we ask them, we might actually get different information, and then we're happy to do it.'
'What do you want your loved ones to know?'
It might feel important for you to express love or forgiveness to family members—or to ask for forgiveness for times you hurt them. Maybe you want them to know you don't fear death, or you'd like to see your estranged kids make peace with each other.
Share these wishes with your family members while you still can, Malley advises, perhaps during a quiet conversation in a coffee shop or around the dinner table. 'Anything will be more comfortable than an emergency room or a lawyer's office,' he says.
Remember: By having the tough conversations early, you're eliminating 'the chaos that can exist when there's no plan,' Malley says. 'Chaos is the last thing families need in a time of crisis.'
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