A close friend’s grandfather is dying, though no one knows how close to death he is—perhaps months away. Even his doctor seems clueless, although perhaps he’s just not saying. In any case, he’s not asking. And even if everything were in the open and everyone on the same page—a pipe dream, I realize—no playbook would reveal itself. Dying is a concatenation of unpredictable events.
The one thing I do know is that no one knows what they’ll want until things actually play out. This man is in his 90s, very debilitated and immunosuppressed. He was hospitalized recently with pneumonia. As he tells everyone around him, repeatedly, he is terrified of dying. When he was admitted, he rescinded his DNR (do-not-resuscitate order).
Presumably this means he wants any and all interventions to prolong his life. I wish his family could be absolutely sure of that, identify which interventions and when and where they might take place, discuss his hopes along with his fears. It would be a boon to his family, and, I think, to him as well. Most of the very old do acknowledge that time is short, and the awareness confers content: it’s the psychological underpinning of the Happiness U-Curve. My fingers are crossed.
If more people had the Talk, it would also advance my anti-ageism agenda. Denying that we will die is the culmination of denying that we are aging, and ageism takes root in that denial. The word “ageism” never appears in Being Mortal: Medicine and What Matters in the End (2014), Atul Gawande’s excellent book about end-of-life decision-making, but internalized ageism is what this passage describes:
[Consulting a geriatrician] requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.
As a direct result, too many of us die in ways we would never have wished, “the consequence of a society that faces the final phase of the human life cycle by trying not to think about it,” he writes.
My friend’s grandfather, alas, is the King of Denial. Only north of 90 did he acknowledge being old, reluctantly, and he seems light years away from talking about not being here at all. He’s at one end of a spectrum, but he’s not all that unusual. Nine out of 10 people say that it’s important to discuss their end-of-life priorities with their loved ones, but barely a quarter have actually done so. “It’s too soon,” we rationalize. “It’s just not the right time.” Until suddenly it’s too late.
In an article called “How to Talk About Dying,” journalist Ellen Goodman describes the high cost of denial. Her mother’s gift on her husband’s last birthday, as he was dying of cancer, was a suitcase. “I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew,” she writes.
Decades later, although Goodman and her mother “talked about everything,” the topic of how her mom wanted to live toward the end never came up. The closest they came “was when she would see someone in dire straits and say, ‘If I’m ever like that, pull the plug.’ But most of the time there is no plug to pull,” Goodman says.
That utter lack of certainty is the hardest thing to get my head around. Even if my friend’s grandfather comes around, and he and his caregivers are able hash out an optimum scenario, it’s highly unlikely that events will conform to that scenario. Atul Gawande says that achieving the death we want requires two kinds of courage: the courage to seek out the truth about our condition, and the courage to act on what we learn.
“The problem is that the wise course is so frequently unclear,” he writes. “For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.”
Tools and practices are emerging to help us figure out the fraught and nuanced answers, which differ for each of us and also change along with our circumstances. Gawande’s book is an excellent resource. More physicians are being trained in how to talk to people about their end-of-life wishes. Medicare has agreed to cover it. Six years after Vice-Presidential candidate Sarah Palin nearly derailed the Affordable Care Act by dubbing those doctor-patient conversations “death panels,” the government revived a proposal to reimburse physicians for having the Talk with their Medicare patients.
In an effort to change the norm from denial to preparedness, Goodman and others founded the Conversation Project, a nonprofit aimed at getting people to talk about what they think they’ll want at the end. At the kitchen table, not in the ICU. Not just with doctors. Also with families and friends.
Since initiating the Talk is the hardest part, the organization has created a Conversation Starter Kit. It’s excellent. It asks you to write down what matters to you at the end of life and uses a sliding scale to pose questions like “I’m worried that I’ll get too little care/overly aggressive care” and “I wouldn’t mind spending my last days in a hospital/I want to be at home.” Those were easy for me, and this one, harder: “I want my loved ones to do exactly what I’ve said, even if it makes them a little uncomfortable/I want my loved ones to do what brings them peace even if it goes against what I’ve said.” Clearly, ideally, the conversation needs to be an ongoing one.
I used the starter kit this week because three of our four kids were in town, and it sure made things easier and clearer. It wasn’t the first time I’d brought the subject up, but like Goodman’s mother, I don’t think I’d actually gotten much farther than “when in doubt, pull the plug.” No aggressive interventions. “What if you’re in a car accident tomorrow and need a new liver?” Murphy asked. Good question. I want that liver.
“It’s way too soon for a DNR,” chided my doctor gently when I talked to her as well. She’s right. I thought I had one; I don’t, just a living will and a medical power of attorney. The kids dutifully followed me upstairs to see where they’re filed.
I stopped being smug about having my papers in order a while ago, as I dug deeper into the disastrous consequences of denial around both aging and dying. The amount of control we have over our final time on earth is largely up to chance. But whether we live that final period in terror is largely up to us. It is a function of whether or not we reject denial, seek out the facts and exercise the agency that remains to us. When we do so, we help change the culture to one that is more cost-efficient, lengthens lives, allows more autonomy, is more humane and helps those left behind to cope and mourn. I’ll give Gawande the last word:
Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.
