But for some people, that’s changing. Growing numbers of people are looking ahead to their final days and making plans. Plans for how they want to be cared for, how they want to be remembered and how they can provide for their loved ones after they’re gone.
The articles below look at some of the ways people are reimagining the approach to end of life. While these approaches vary considerably, they share a common theme: a desire to ensure that our final act on this earth isn’t just about dying; it's about dying well.
Professor David Sloane, author of "Is The Cemetery Dead?", discusses how our attitudes toward death are changing — and disrupting the funeral industry including three trends: cremation, green burials and social grieving. Read Transcript
The Most Important Conversation You're Not Having
As a Pulitzer Prize–winning journalist and newspaper columnist, Ellen Goodman is an expert at questioning people. She knows how to engage in conversation to get to the heart of things.
But it wasn’t until her mother was days away from dying and unable to communicate — after Goodman had spent years as her caretaker as she suffered from Alzheimer’s — that it struck Goodman: She had never asked her mom how she wanted to live out her final days.
"I was blindsided by the cascading number of decisions I had to make about my mother’s care," Goodman says.
"Decisions for which I was wholly unprepared. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it."
End-of-life discussions are something most of us would rather not face. Talking about how we die — from the type of care we want in our final days, to what type of final arrangements we want, to planning for our death and afterward — is something our culture has avoided for generations. But a growing number of movements are springing up to change that, driven by the notion that the value of these conversations far outweighs the discomfort.
Goodman's experience with her mother led her to create The Conversation Project, a not-for-profit that encourages people to start the conversation about end-of-life wishes now, before it’s too late. "We believe that the place for this to begin is at the kitchen table — not in the intensive care unit — with the people we love," The Conversation Project says on its website.
The Conversation Project is a global initiative aimed at changing the fact that "too many people die in a manner they would not choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain."
The primary tool in this effort is The Conversation Starter Kit — a free, downloadable guide that walks through the process of having the conversation, from overcoming the awkwardness and fear around talking about death to understanding exactly what decisions are involved in end-of-life care.
The Starter Kit is designed so you can initiate the conversation, whether you want to make your own end-of-life care wishes known or you want to find out the wishes of a loved one. For example, an elderly parent can use the kit to have the conversation with their children, or the children of that elderly parent can use the kit to start the conversation with the parent.
The Starter Kit is meant to be followed step by step in its entirety; below is an overview, with the caveat that it’s not a substitute for the actual Starter Kit.
The Starter Kit breaks the conversation process down into four steps:
A few questions to prepare for the conversation, with the reminder: "You don’t need to have the conversation just yet. It’s okay to just start thinking about it."
Some more questions to get you ready for the conversation; the questions start to zero in on things like: "What’s most important to you as you think about how to live at the end of your life? What do you value most?"
Final questions and thought-starters before you start the conversation. Topics include when and where would be a good time to talk, some ways to break the ice, and specific suggestions on what to talk about.
Once you've started the conversation, this section provides questions to help you collect your thoughts about how your first talk went, and to think about what you’d like to talk about in future conversations.
While The Conversation Project focuses on end-of-life care, financial planning for both end of life and after death is also emotionally fraught. Many people want to provide for their loved ones and protect them from the financial impact of a funeral, but don’t have a plan in place. So any end-of-life conversation should include finances, which may include life insurance. Life insurance funds can help loved ones pay monthly living expenses and pay off debts, including funeral expenses. They can also help send a child to college one day, continue a family business, or leave a legacy for your favorite charity.
"Any conversation about end-of-life issues is a process, and usually involves more than a single discussion."
"What a conversation can do," says Patty Webster, The Conversation Project's advisor for community engagement," is provide a shared understanding of what matters most to you and your loved ones. This can make it easier to make decisions when the time comes."
One of the advisors to The Conversation Project is Dr. Atul Gawande, the world-renowned surgeon, writer and public health researcher. In an interview with the PBS program FRONTLINE, Gawande said that when it comes to end-of-life care, too many questions are going unasked. Questions like: What are your priorities if your time is limited? What are your goals for treatment? What are your fears? And what trade-offs are you willing to accept as a result of your care?
In a short essay on The Conversation Project website, Gawande states: "People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others."
As Goodman discovered in talking with clergy, doctors, colleagues and friends after her mother's death, almost all of us have stories of someone we know experiencing a "good death" or a "hard death." Which is why she has made The Conversation Project her personal mission. Because, as Goodman now knows, and wants everyone to know, one conversation can make all the difference.
Why Talking Matters
Sharing your wishes for end-of-life care and financial planning can bring you closer to the people you love. It’s critically important. And you can do it.
Consider the facts:
92% of people say that talking with their loved ones about end-of-life care is important.
32% have actually done so.
Source: The Conversation Project National Survey (2018)
97% of people say it’s important to put their wishes in writing.
37% have actually done it.
Source: Kaiser Family Foundation Serious Illness in Late Life Survey (2017)
95% say they are willing or want to talk about their end-of-life wishes.
21% of people say they haven’t had the conversation because they don’t want to upset their loved ones.
Source: The Conversation Project National Survey (2018)
Talking about end-of-life issues can be unsettling, and it’s normal to feel nervous. Here are two resources to help guide you through the process.
The Conversation Starter Kit
Mutual of Omaha Final Wishes Planning Guide