Popular attitudes about end-of-life care and death are changing, making it easier to thoughtfully prepare for the inevitable. Learn how to protect your quality of life — and that of your loved ones — all the way through.
We all know there’s only one thing certain about our lives: They will end. And yet this ultimate certainty, death, is also a gigantic unknown — something so profound and, for many of us, so frightening that it can be nearly impossible to imagine, let alone discuss.
Enter modern medicine. Its panoply of life-extending techniques creates the illusion that we can cheat the Grim Reaper indefinitely. While they offer hope in many ways, these technologies have also helped medicalize death, hiding it in hospitals rather than allowing it to be part of everyday life. As recently as 1945, most deaths occurred at home; by the 1980s, only 17 percent did, according to surgeon-journalist Atul Gawande, MD, MPH, in his best-selling book, Being Mortal.
Advances in medical technology have fostered unreasonable expectations about the capabilities of our healthcare system, Gawande notes. Even the death of a terminally ill or elderly patient can seem like a terrible failure to a doctor — and to the deceased’s loved ones.
We’ve become so accustomed to the idea that death is a mistake that we often direct our grief and anger at medical teams for failing to perform a miracle, even in the absence of obvious errors. “Death, of course, is not a failure,” Gawande writes. “Death may be the enemy, but it is also the natural order of things.”
More of us are coming to accept the fact that death is simply part of life. Forward-thinking healthcare providers, academics, funeral directors, and even advocates of a “death-positive” movement are all working to challenge what Gawande calls an “experiment of making mortality a medical experience.”
Anita Brikman, senior vice president of strategic communications at the National Hospice and Palliative Care Organization, explains this movement as an effort “to de-medicalize and re-personalize the end-of-life experience.”
These thinkers aim to empower people facing the end of their lives — which is, in effect, all of us. They want to help us reclaim the autonomy we often lose when we’re terminally ill, and to ensure that we can make our own decisions about — and during — life’s exit phase, free of any automatic assumptions that we wish to prolong our lives at any cost.
Katy Butler, who chronicled her father’s passing in Knocking on Heaven’s Door: The Path to a Better Way of Death, puts it this way: “When people say they want to die at home, as 75 percent do, it’s really a symbol of wanting to have some control over the environment of their death.”
Brikman notes that in 2013 an estimated 1.6 million Americans opted for hospice and palliative care — a holistic approach that emphasizes acceptance, comfort, and counseling over the endless deployment of lifesaving medical measures. It usually allows for death at home, which is really a return to tradition.
“We used to do our own death care,” says Sarah Troop, executive director of a “death-positive” organization called The Order of the Good Death. “Our loved ones died at home. Death wasn’t outsourced to someone else.”
This way of thinking, whether we frame it as old or new, means our choices about how we want to navigate death are coming to more closely reflect our choices about how we want to live. And this, as any jazz funeral in New Orleans demonstrates, is something to celebrate.
Getting Real About Mortality
It’s not surprising that so many of us go through life behaving as if we’re going to live forever. Death is a particularly taboo subject in health-obsessed, youth-worshiping America. Counselor Howard Winokuer, PhD, coauthor of Principles and Practices of Grief Counseling, says it bluntly: “We’re a death-denying society.”
We’re prone to thinking that talking about death means morbidity, sadness, and defeatism, so we avoid it. Sixty percent of participants in one California study said that making sure their families weren’t burdened by tough care decisions at the end of life was “extremely important,” yet 56 percent had not communicated their end-of-life wishes to anyone.
Death is also a tricky topic for those who believe in an afterlife, says psychologist and suicide-prevention expert Lisa Firestone, PhD. “Not all believers are secure in their beliefs,” she explains. “And even if you do believe firmly in an afterlife, many people feel worried about the huge change from the life you have now to what the afterlife represents.”
All of this means that end-of-life planning will likely induce some fear and denial, as well as worry, about being perceived as a morbid downer by others if we raise these issues in conversation. This can lead to endless procrastination — unless we recognize the burden of uncertainty and confusion that not making plans places on those who will be caring for us.
But facing death honestly can lead to the very opposite of morbidity, insists Firestone. “When we stop denying that we’re going to die, we allow ourselves to be more fully alive in the present moment,” she says.
Contemplating death, doing our best to accept its inevitability, and then taking action to decide how we’d like to experience it — this will bring up discomfort, she concedes. “But it’s worth feeling these feelings, because on the other side of the pain there’s vitality.”
Most experts recommend having the often-difficult but all-important discussion with your family about end-of-life issues well before a health crisis occurs, with its distractions and amped-up emotions. Physician and communications consultant Neha Sangwan, MD, believes that “the best time to talk about the end of life is when it’s not the end of life.”
“This allows people to think clearly and reflect upon how they ideally want to transition from this Earth,” she continues. “The problem is most people avoid the emotion that can accompany this discussion, and it becomes an emergency decision at the bedside to determine how much medical intervention to use.”
The Conversation With Family
When you start to discuss your end-of-life wishes with others, don’t be surprised if you run into a few walls. Talking about end-of-life priorities with loved ones can be hard, especially if they haven’t come to terms with their own mortality.
“We fear that if we talk about someone else’s death, we’ll also have to talk about our own,” says Janice Nadeau, PhD, a psychologist and grief specialist in Minneapolis. She notes that the willingness to talk about any sensitive subject will differ a great deal from family to family. “In a family touched by alcoholism or another dysfunction, for example, members may be so used to denying ‘the elephant in the room’ that they avoid all negative topics.”
Then there are the myriad challenges of encouraging your loved ones to express their own end-of-life wishes. Raising the issue can be tough, especially with elders, who may be accustomed to controlling their own affairs. Older relatives, says Nadeau, may feel that you are “hurrying them along” when you ask them to discuss these matters. If they have substantial assets, they may even feel anxious that younger family members have an eye on inheritances.
Certain gestures can make this communication easier. Writing your own living will and being able to face your own mortality before approaching a loved one about the topics may ease whatever stigma he or she might feel about being older or terminally ill. Showing that you understand everyone is mortal can help you start the conversation on equal terms. (For more ideas on how to get started, see “Planning for the Inevitable: End-of-Life Discussions.”)
Once you’ve broached the topic, it’s important to really listen and not try to steer the conversation in a specific direction, even toward your idea of an “enlightened” approach, Sangwan says.
“If you have a hidden agenda — if you want your loved one to make certain choices about the end of life that you would make,” she says, “the conversation can be challenging.” Caregivers need to constantly remind themselves to be “genuinely curious about what their loved ones want and honor that decision, even when it’s difficult.”
The Conversation With Doctors
A major source of stress at the end of life — for both patients and their caregivers — comes from simply talking to doctors. Physicians often use euphemisms or overly technical terms, so it may not be clear that, say, “multiple systems organ failure” means “dying.” Fear, fatigue, and intimidation can create a situation in which you simply don’t know what’s going on.
To gain some clarity, focus on the basics. “Sit down with the doctor,” says Butler. “Ask frank questions like, ‘Is this going to get me? Would you be surprised if I died within the year? I know we’re hoping for the best, but if the best doesn’t happen, what’s the normal course of this illness and what will death be like?’”
These interactions are no easier for doctors than they are for patients or caregivers. “The conversation about death operates at a level at which physicians aren’t trained,” Sangwan says. “We’re caring people who are extensively trained on a physical level to diagnose and treat disease. The end of life brings up strong emotions and big questions about the purpose, meaning, and value of one’s existence. It also brings up regrets and missed opportunities. These dilemmas are occurring on mental, emotional, social, and spiritual levels.
“You as a patient will benefit by being very clear with the doctor about what you need at any given moment and asking for it,” she adds, “whether it’s a clearer explanation, a second opinion, an acknowledgement of how scared you are, or someone to join with you in prayer.”
Once you understand the situation fully, you can make care decisions based on your values, Butler says. “After clarifying what’s important to you or your loved one about living and dying, you may come to a point where you draw a line that says, ‘I don’t want any more of this suffering in order to live maybe a week or a month longer.’ And everybody will draw the line at a different place.”
“The people who have the hardest time accepting death are the people who have the most regrets about what they didn’t do,” Winokuer says. When the end nears, he believes our peace is proportionate to how deliberately we’ve lived — acting on our values and dreams, showing people how much we love them. He recommends making a bucket list and pursuing as many of the items on it as possible.
Nadeau stresses the importance of expressing affection. “I suggest that people write love letters to people important to them — right now,” she says. “Tell them how much they mean to you. Send the letters in the mail. In the age of email, letters mean a lot.” While we may wish we’d climbed Everest or learned to play the bassoon, she says, the most poignant end-of-life regrets often involve personal relationships.
Butler wrote a series of “legacy letters” to her father after his stroke, thanking him for his many gifts and all he had taught her. When he died several years later, she says, “I had no unfinished business with him at all.”
This kind of “clearing” of relationships can lead to better medical consequences, too. “When you’ve really settled a relationship with someone who’s dying,” she says, “you’re more likely to be able to let them go peacefully, without pushing for a lot of last-minute interventions.”
Telling the Story
An important question comes with a serious diagnosis: how, and how much, to tell relatives and friends? It’s a particularly vexing question in the age of Facebook, Twitter, and generally excessive online sharing.
No matter how you decide to share the news, Beth McNaughton, vice president of the healthcare social network Inspire, encourages people to inform family members and close friends first — face-to-face, or by phone. No one should have to learn about a loved one’s illness on Facebook.
As for social media, use discretion. If it’s your story, tell it however feels best. If it’s someone else’s, talk with that person first about how, and with whom, to share information. As McNaughton notes, “many older people may distrust social media and not want all the gory details of their illnesses shared broadly.”
Some people feel perfectly at ease sharing their stories on social media, and this can lead to abundant encouragement and verbal support from friends and loved ones. It can be a blessing for caregivers, too, who may be too busy with tasks to field phone calls or emails. “You can write the information down once and disseminate it,” says McNaughton.
In general, she recommends password-protected sites (like CaringBridge, or her own, Inspire) designed to share health information with a chosen network, rather than Facebook, where relationships are likely to be more tangential. These marginal “friends” may publicize information in ways you never would.
McNaughton recommends setting some boundaries and goals before deciding what information to share. “Are you looking simply to inform people of the progress of the illness? Are you looking for emotional support? Are you organizing concrete support such as help with cooking or shopping?” These issues can help determine what you share, she says.
Planning a Memorable Memorial
You don’t need to leave the details of your funeral planning to your loved ones. They will likely appreciate knowing how you’d like your memorial (or celebration) to unfold — and there are many choices beyond the traditional lugubrious funeral in a quiet, carpeted parlor.
“You can have any kind of memorial gathering you want, anywhere,” says Troop. “You can create a special cocktail, like people do at weddings; you can serve meals that the deceased loved. You can have an ice-cream truck! A lot of traditions around the world include candies and other sweet dishes in the funeral as a reminder that life is bitter and sad sometimes, but it’s also sweet.”
If you’d like music, tell your family what style — or pick it yourself. Maybe it’s a quiet mix of your favorite songs, or a live band accompanied by a champagne toast. You can even write your own obituary in whatever tone you’d like, or ask one of your favorite writer friends to do it for you. (For a beautiful and extremely funny example, see what writer Nora McInerny Purmort, this month’s cover subject, cocreated with her husband, Aaron, before he died: https://strib.mn/1rMRKoc.)
And when it comes to choosing a final resting place, “traditional embalming and burial are not our only options,” Troop says.
Choices range from the ordinary — cremation and burial — to the truly whimsical. Artist Jae Rhim Lee created a “mushroom death suit” that’s infused with mushroom spores; they “digest” the body as it decomposes, neutralizing pesticides, preservatives, and heavy metals. Italian designers have fashioned the Capsula Mundi, a burial pod that allows your body to fertilize a tree. There’s also the green-burial movement, which encompasses a wide range of burial practices that support natural decomposition.
Perhaps the best thing about these unconventional rituals is that they show we have plenty of power to make the end of our lives a positive experience, a time for deep connections and genuine self-expression. All we need is the willingness to recognize that life is short, and the will to create our own plans for its inevitable end, well before it occurs.
After that, we can get on with living life like we mean it.
This article originally appeared as “Love the Ending” in the November 2016 print issue of Experience Life.
Photo Illustrations by Cliff Alejandro
Translating End-of-Life Medical Euphemisms
by Jon Spayde
In the course of her father’s final illness, Katy Butler, author of Knocking on Heaven’s Door: The Path to a Better Way of Death, found that it was, at times, very hard to understand exactly what was happening with him. “Doctors use euphemisms,” she says. “It may seem like a kindness to soften their language, but it denies the information a family really needs to make the right choices.” Here are a few such words, in Butler’s “translations.”
Care: Medical treatment. “Doctors often confusingly use ‘care’ in the sense of ‘medical interventions,’ not measures to keep the patient comfortable,” says Butler. “‘Withdrawing care’ can sound as if the patient is being abandoned, but it usually means stopping procedures aimed at arresting or curing the final illness. It can be a signal to begin palliative or comfort care.”
Chronic: The illness is incurable.
Goals of care: Priorities. What really matters to you when doctors know they can no longer cure you — what they can do to make you comfortable or make it possible for you take your grandkids to Disneyland before you get too sick.
Multiple co-morbidities: Several serious illnesses, any one of which could lead to death.
Multiple systems organ failure: You’re dying.
Progressive: The illness is getting worse.