A story of death: Tackling the last taboo
We’re used to the expression “mid-life crisis.” It’s the moment we wake up and realize that perhaps we haven’t invested the great equalizing currency of time as well as we could have. Why drive a 12-year old Honda when you could ride a motorbike? Why be stuck in a relationship you know slowly shriveled to nothingness years ago when there might be something far more exciting around the corner? That sort of thing. We rarely — if ever — pause to think that the very concept of a mid-life crisis includes a fallacy.
We know when we were born. Only in rare circumstances does it become knowable when we will breathe our final breath.
The nature of the fallacy is obvious. A piece of string? Fold it in half to find the middle. A music track? The height of a building? Finding the middle is easy. A life is different; only in retrospect does it become possible to determine how long it is, which is the prerequisite to knowing when the middle was. We know when we were born. Only in rare circumstances does it become knowable when we will breathe our final breath.
It is at the contact surface of this question — not knowing where and how death will find us — that we are facing some really fascinating challenges.
The hardest conversation
The uncertainty — both of the time we will die, and what happens to us after that final second ticks over on the countdown clock — makes death an uncomfortable topic of discussion for many.
“Who is your closest friend, Beatrice?” I asked a 68 year old woman recently.
“Anna, I think?” she answered hesitantly.
“Does Anna know what you would want if you were to be in an accident?”
“I know she wants to adopt my dog?” she replied.
“Okay,” I laughed, slightly surprised by the answer. “Does she know what you want to do with your house? The cats? Does she know what you would want to do in case an accident leaves you, say, severely brain damaged?”
“Oh, no. She hates the cats,” she replied, ignoring the rest of my questions.
“Who do you think Anna’s best friend is?” I asked Beatrice, changing tack.
“I am, I suppose?” she replied, pausing for a second, before nodding affirmatively. “I am.”
“Do you know what her wishes are?” I asked.
“No…” she pondered, curious why I would even ask the question.
Beatrice and Anna are two long-time friends who have been through a lot together. They are each other’s best friends. Both are of an age where they’ve come to the realization that death is an inevitability that, if drawn on a timeline, is probably closer to them than the circle marking their births. And yet, the hesitancy of having these hard conversations with close friends, family, and loved ones is encapsulated aptly in that one exchange.
Anna and Beatrice are just one example. But it is an extremely common one.
A real problem
This isn’t a conversation about taboos. Well, it is, but it isn’t exclusively a conversation about taboos. Our reluctance to talk seriously about death hides a number of extremely hard truths.
Some deaths can be planned for. If you’re diagnosed with an illness, for example, you hope for a cure but plan for the end. As difficult as it is to deal with a slow and often painful march toward an end, it makes some things easier. Wills and cremation vs burial are part of that conversation. The conditions under which to turn off the machines is another. Framed against inevitability, it becomes socially acceptable to embark on some of the conversations that need to be had.
However, many of us won’t be so “lucky” as to have a relatively predictable end-game. In the U.S. in 2014, 135,000 of us died of accidents, and another 200,000 or so died from causes that would have seen a sudden, violent or otherwise unpredictable end of life. Each number in those statistics is a person. Each of those people who suffer an unforeseen death are surrounded by loved ones for whom a chain of events is triggered. These loved ones will need to make decisions for which many of them will be woefully ill-prepared.
The hardest decision
By far one of the hardest decisions to settle on is to make the choice for someone else to give up a fight. As medical technology, knowledge, and processes improve, we can keep people alive for a long period of time. But this depends on the extent to which you’re willing to compromise on the meaning of the word “alive.” It turns out that people have differing expectations of what it means to be “alive.”
Quality of life is a topic that has been covered in fact and fiction many times over. (The film that most recently moved me in this respect is Me Before You. Ostensibly it’s a rom-com featuring the Mother of Dragons from HBO’s Game of Thrones, but the film digs surprisingly deep into the topic. Highly recommended.) But the question at the core of it is a very complicated question: At which point does a life become no longer worth living?
The most succinct description I’ve heard is: “If I can’t drink beer with one hand and hold the remote to enjoy the game in the other, you can turn off the machines. My life wouldn’t be worth living.” Presumably this person would be willing to compromise and be prepared to put down their beer briefly to pick up the television remote, should they lose the use of an arm. There are also a couple of other questions that need to be answered, but the simplicity of the answer is refreshing, and it gives a clear directive of sorts. At least it can be used as a guideline for making decisions.
If a loved one is in an accident, stuck in a coma with a very low chance of recovery, without an Advance Care Directive (ACD) you’ve reached the worst possible scenario. As if the patient is no longer cognizant to make key decisions, these choices fall to their loved ones. These are the very same people who are thrown into turmoil baked from a mixture of grief and hope. They are likely to be extremely reluctant to give up on their friend or family member. Emotionally, they are in the very worst position to make these decisions.
Choosing when — or more precisely, under which circumstances — you no longer want to be artificially kept alive is a deeply personal choice. It’s one people should be making for themselves. They can; filling out an ACD is something you can do with your doctor or your family. But people extremely rarely do. In the U.S., More than 70% of people don’t have one, and the vast majority of those folks have little or no awareness of what an ACD is.
There’s no denying that speaking to loved ones about their final wishes is something that feels far away, abstract, and sometimes uncomfortable. Thinking about death is admitting one’s own mortality, which can be terrifying. What is the alternative? Causing the distress of forcing someone else to make decisions for you strikes me as deeply unfair. Unfair to them for having to make the call. Unfair to you in case they don’t know your wishes, or — worse — decide to override them for reasons selfish or otherwise.
All of these challenges can be traced back to a single problem: A reluctance to have this conversation and to put decisions in writing. Whether it stems from taboo or something else is hard to say — I’m only just starting to explore these ideas myself — but one conclusion is that we’re all worse off for not having these journeys of contemplation. First with yourself, then with your loved ones.
We owe it to ourselves. We owe it to each other.
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