Guest post by Jennifer Li
Medical Student, Keck School of Medicine of USC
We all realize it, but most of us try our best to avoid thinking about it. Someday, we’re going to die. And perhaps the hardest thing to accept is that we have very little control over how and when that will happen.
Occasionally, we’re forced to revisit this worry when life hands us a tragedy. It could be the death of a friend or family member, or a personal diagnosis that jolts us into the inescapable reality of death. This can raise concerns over what that experience will be like, or what will happen to the people we care about after we’re gone. “Who will care for my child? My pet? My aging parent?”
While these questions are difficult to stare down, they can’t be ignored. Acknowledging death as a part of life can motivate and liberate us to live more fulfilling lives now.
As Morrie says to Mitch Albom in Tuesdays with Morrie, “Everyone knows they’re going to die… but nobody believes it. If we did, we would do things differently.”
Embracing the notion of death and planning ahead for it encapsulates the notion of what it means to be “death positive.” Some mistakenly associate the term with a morbid curiosity about the macabre or adopting a fatalistic worldview. In reality, it’s a unified movement of people across the world who are passionate about helping others come to terms with their mortality to 1) become more focused on living in the present and 2) be more prepared when death comes knocking.
What is the “death positive” movement?
In 2011, mortician and death positive social media influencer Caitlin Doughty founded The Order of the Good Death to change the way society thinks about (or doesn’t think about) death. Much thanks to Doughty and the death positive movement, more of us are starting to realize that the best, and perhaps
The Order’s website explains what it means to be death positive with 8 guiding tenets. In summary, these principles encourage people to:
- Be open to discussing death with others, through art, education, and in public forums
- Be more intimately involved in the millennia-old traditions of helping prepare our loved ones’ bodies for burial (e.g. viewings in the home, spending
timeto grieve beside the body)
- Express their unique wishes for end-of-life by completing advance directives (healthy or sick, young or old!) and having comprehensive plans in place (an estate plan, a funeral plan) to make things easier on the loved ones left behind
- Adopt more natural and environmentally-friendly burial practices (e.g. avoid embalming, use biodegradable caskets or burial shrouds to bury the body
directin the soil)
The fallout: when we don’t talk about death
Sometimes we’re better motivated by understanding what happens when we don’t prepare for something.
In 2014, Dr. Atul Gawande published Being Mortal, a book about what happens when medicine doesn’t have the cure. What do we do when modern medicine reaches its limits? The default mode of care is to provide every treatment and perform every life-saving intervention possible until the very last breath. Gawande criticizes this treatment-at-all-costs model: “The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity and extraordinary suffering.”
When we ignore death, we don’t plan for it. When we don’t plan for it, we lose control over our personal death experience. That could mean that you die in a hospital, instead of at home. Or you receive a feeding tube to prolong life when you would have preferred to die of natural causes.
For these reasons, Gawande believes we should confront death head-on. Families should be asking one another what they would want in hypothetical scenarios. If you were seriously ill, would you prefer to die at home? Would you want to continue fighting if it means you spend every day at the hospital - or in pain? Would you rather focus on comfort and being with your loved ones as long as possible?
It’s important to consider questions like this, as the default experience of modern medicine at the end of life can feel like a conveyor belt. You tend to get all the standard care and life-saving interventions unless you opt out.
This is especially true if you are incapacitated from decision making and haven’t named someone to make decisions for you
Starting these conversations early on— while we’re healthy—is the best way to live out our lives fully, on our own terms, to the very end.
Talking about death with a loved one
Even if you’re primarily concerned about figuring out your own end-of-life preferences, chances are you want to prompt a loved one to plan ahead, too.
When talking to a loved one, you might wonder if you’re coming off as morbid. The truth is, whoever you’re talking to will probably be relieved you’re breaking the ice on the topic. This discussion can also result in some of the most meaningful, eye-opening conversations you’ll ever have with the people you care about most.
And if they’re not ready to talk about death? Well, they will probably let you know! Don’t force it with an all-or-nothing approach. The important thing is to open the
Dr. Gawande notes that some people will inevitably be skeptical of the motivations behind these conversations: “For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged.” To that notion, he aptly retorts, “but what if the sick and aged are already being sacrificed?”
In other words, you may need to risk offending someone with this conversation to have the chance of motivating them to action. Reiterate that your motivations are born from love and concern. You want to prevent them from experiencing a death they wouldn’t want. You are showing care and respect for their independence and happiness, and giving them the chance to live and die in the way that they want.
Resources for talking about death & end of life wishes
So, you’re ready to become more “death positive” and have meaningful conversations about life and death? Here are a few resources to get you started. Not everyone responds to each approach, so it’s worth exploring several to get a sense for what resonates with you or your loved one.
- Cake: Use this free planning website to get your affairs in order (or help a loved one out). You’ll be able to easily explore your end-of-life preferences, document your wishes, and share everything with your family. You’re on the Cake blog right now! Create a free Cake account.
- The Conversation Project: This printable guide helps you talk with your loved ones openly and honestly about what matters most to you and them at the end of life. If you do your end-of-life planning using The Conversation Project, you can upload your plan to a free Cake account for safekeeping and sharing with family.
- Death Café: Attend or host a “death café.” This website provides a listing of death cafe events around the world. These are casual events (typically held in a cafe or public space) designed to get people talking about death preparedness in a social, engaging environment. You’ll meet and chat with people from all walks of life and likely walk away with some enlightening perspectives. Find out if there’s one near you!
- Death Over Dinner: This personalized tool helps you organize a home dinner with friends and family to discuss topics related to death in an empowering and engaging way. It sounds like a real downer, but it’s actually designed to be a fun and unique experience!
For more death conversation resources, check out 4 Ways to Get More Comfortable With Death.
Where can I learn more about death preparedness?
Here are more helpful resources that address death head-on.
Books about dying
- Knocking on Heaven's Door – Katy Butler
- The Five People You Meet in Heaven – Mitch Albom
- When Breath Becomes Air – Paul Kalanithi
- Being Mortal – Atul Gawande
- How We Die – Sherwin B. Nuland
Death positive websites
Documentaries about dying
How do I express my end-of-life wishes?
Once you’re ready to explore and begin documenting preferences, a free Cake account is an easy way to get started. Cake guides you through planning for all the important things your family will need to know someday, including healthcare, legal, funeral, and legacy decisions. In this sense, planning with Cake is a huge gift that unburdens your family from making difficult decisions at the end of your life and beyond.
Getting the conversation started can be the hardest part, but hopefully, it now seems less intimidating.
Jenny is a medical student at the Keck School of Medicine of USC. She graduated from MIT with a B.S. in Biology and is interested in digital health, medical devices, health policy, and palliative care. She believes in writing for change and loves Cake even more than cake.
“Death Positive Movement.” The Order of the Good Death, Caitlin Doughty, The Order of the Good Death, 2019. www.orderofthegooddeath.com/resources/death-positive-movement