I was 21 years old the first time I realized that an end-of-life decision isn’t always made by the individual who is dying. I was my grandmother’s caretaker and after months in and out of ICU, I learned that the decision on her end of life would fall to me. I remember my blood running cold when the doctors asked me if she’d ever told us how she wanted to die. My grandma was an Ecuadorian immigrant who came to America in the 1950s. Our conversations centered around things that she felt wouldn’t trigger any superstitions or bad luck, so back in 2014 the only thing I could tell her doctors was that no, she hadn’t told us.
The COVID-19 pandemic has surfaced memories around end of life that I had locked up after my grandmother’s death. Many may be hearing and thinking about words and phrases like “advanced care directives,” “intubation,” and “quality of life” for the first time. For those who have heard these terms before, they could still sound foreign, because normally our conversations around mortality aren’t this visible. In most cases, we aren’t aware of end-of-life protocols until we’re trying to make them for someone we love—and at that point it’s guesswork.
But these conversations don’t have to be reactive. The conversations around end of life have shifted dramatically since my first encounter with the weight of these decisions. Now, there are startups like Lantern, a public benefit corporation co-founded by Liz Eddy, that are working to add as much simplicity as possible to the end-of-life conversation, in an effort to encourage others to do it preemptively and without fear.
“We see end-of-life planning in a holistic way,” explains Eddy. “There’s a common misconception that end of life planning is having a will and an advanced care directive.” (An advanced care directive is also known as a a living will, a legal document where you specify what actions should be taken for your health if you’re no longer able to make those decisions due to illness.)
“The way that we’re set up is yes, those are very critical parts of that process, but there’s a lot of other things that are often forgotten that you can handle beforehand,” Eddy continues. “Things like having a life insurance policy, but also, what do you do with your digital legacy? Where are your passwords stored? Do your loved ones know where your important documents are or where important possessions are? What do you want your memorial service or funeral to be like?”
The importance of having these conversations beforehand, I found, is that it rids you of the pressure to get it right and the guilt of knowing you can never get it perfect.
“People won’t know what you want if you don’t tell them,” Eddy adds. “We’ve found that one of the biggest stressors for grieving families is having to guess what somebody wants.”
Here, four tips on having a end-of-life conversation about what a loved one would want after passing
1. Push through the awkwardness—it can help normalize the conversation
Cheryl Walpole Tiku, a therapist at Alma, shared that the best way to have the conversation is to act like it’s completely normal to be having it, even when it doesn’t feel like it.
“The way that I [encourage patients] is to treat it as if it is just a regular conversation that we are supposed to be having all the time,” adds Walpole Tiku. “Everyone talks about birth all the time. I think it’s about breaking the taboo and having a different relationship with end of life.”
2. Acknowledge cultural, generational, and religious barriers
It’s easier to work around what you already know is there, so don’t ignore the realities of cultural, generational, or religious barriers, suggests Walpole Tiku. Instead, if you’re talking to a loved one about their end-of-life wishes, focus on how to use the cultural or religious aspects as segues into the more logistical details you’re trying to nail down.
“It’s asking ‘what are your own personal beliefs?’” suggests Walpole Tiku. “It’s about building their relationship with grounding, factual information, while guiding them towards what type of spiritual piece they want to add to their experience. Building that relationship without it being so scary and taboo does tend to help with the anxiety or fear.”
Reminding your loved ones (and yourself) that working through the process offers more than just knowing where the passwords are, also helps.
“One of the most beautiful things about [our process] is that typically when someone passes away you get handed a bunch of legal paperwork, account information, and things that really make you feel not connected to that person,” explains Eddy. “And if you can get handed an end-of-life plan where suddenly you’re learning things about your spouse, parents, whoever, that you might not have known—that [gets] to be a part of the end-of-life planning process too.”
3. Remember the facts, even when you feel like you should be knocking on wood after the conversation
“Having an end-of-life plan doesn’t make you die,” Eddy reminds us. “I think a lot of times we have this feeling of ‘if you think about it, it’s suddenly making you more prone to the possibility,’ but in reality there’s research that shows that addressing and embracing your own mortality actually makes you a happier person. It makes you more conscious of time and love harder.”
Walpole Tiku suggests focusing on why you’re doing this, and where you are in the moment you are doing it. “Bring yourself back to center and to the fact that you’re doing this to make yourself feel safe, and [remember] that you are also safe in the present moment.” It’s also a good idea to start having these conversations (particularly with loved ones you live with or care for) earlier rather than later.
4. Set realistic expectations
Having an end-of-life conversation isn’t easy and even after presenting all the facts or benefits, there are many people who may still not be interested in engaging. Knowing when to cut your losses and aim for the bare minimum needed is key.
“I think if somebody has really tried the tactics of explaining why, either from a logical or an emotional perspective, and they still just have no interest in it, then I think all you need to do is just make sure [you know where their information is] and they know where [your] information is,” explains Eddy.
Relieving yourself from the pressure or expectation that it will be a truth-finding or history-finding conversation with a loved one will help remind you both that at the very least you simply need to know where the important documents are and what you’re comfortable with.
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