4 Reasons Why We Avoid Talking About Death (But Shouldn't)
Most of us still don't have a will, or more importantly, any idea about how we'd want to be treated at the end of life. And when we do die, we tend to view it as a shameful defeat rather than a natural part of being alive.
With the exception of Wendy, who outwitted that forest witch in 1575, everyone reading this article will eventually die. Yet, even in such a deadly time, we haven't learned how to plan or even discuss what happens before or after our death ...
Death Is Rare And Expensive (So It's Easy To Ignore)
The weird thing about our modern relationship with death is that it's a side effect of a really, really amazing human story. In short, there's simply less bucket-kicking. The average world lifespan in 1900 was 32. The average world lifespan in 2020? Around 72. That's multiple extra lives -- like we've all eaten fictional mushrooms and got enlightened with real ones. There were amazing breakthroughs (think heroic polio vaccine), and boring fixes won by collective action (think heroic municipal sewer systems) that made it possible.
Not only are we really, really good at keeping older people alive, but we're also really, really good at ensuring that kids don't die. In 1900, 30% of all American deaths were under five; a century later, it was 1.4%. Children that used to die right out the gate are saved routinely. We've seen this story play out pretty much everywhere people exist.
My own kids were in the NICU for months after they were born, and they were 3.3 pounds each, average healthy babies being around twice that. They weren't even the smallest kids in the NICU either; the smallest ones were around a pound. Doctors have sent babies home at half that size. Without modern medicine, all of them would've died.
Advances in medical science also mean that death plays out differently.
Back in the day, disease wasn't a long road of maybes and treatments and possible healing; it was a short cliff because there was nothing medical science could do for you. Even the medical interventions available meant that you would die quickly -- it turns out you don't live very long in a doctor's care if mercury's a go-to medicine. Today, there's usually something a doctor can do to prolong a life, even if we're not taking the quality of that extended life into account.
On top of all that, death's hella expensive. To say nothing of medical bills, the single most common cause of bankruptcy in the US, the average funeral in the United States is over $7k. That's when most people can't come up with $500 for an emergency expense and increasingly turn to crowdfunding to help cover the cost of a funeral. And if there's one thing that we don't want to discuss with anyone, it's not death; it's money.
Put all of this together, and people will go to absurd lengths not to talk about death.
Not Facing Death Has Huge Consequences (While You're Alive)
All of this would be fine if there weren't any consequences. I mean, we put off stuff all the time, and it doesn't come back to bite us. Right? Right?
Earlier, we mentioned how the majority of American adults don't have a will, with the biggest reasons being that they A) haven't gotten around to it and B) don't have enough assets to pass on to anyone. But even the assets thing is important when you don't have a ton of money. If you die, your SO has to go through probate court to get ahold of, say, your junker that they need to get to work. That can be a huge pain in the ass, courts not being ideal environments for, you know, people in mourning or broke people for that matter. And it could've been avoided with a few sheets of paper you probably could've gotten for free. Plus, with a will, you can demand your funeral have good liquor, entrance themes, and pyrotechnics.
And a tasteful reading of the best eulogy ever written.
Probate court is small spuds compared to the kind of things that can happen to your body. Most people don't have any kind of directive for their end-of-life care. Basically, we haven't made decisions of what to do if our heart stops, or we can't eat, or breathe on our own, things like that. We don't designate who makes those decisions when we're laid up in a hospital bed, either. As a result, you have a lot of patients who teeter at the end of life.
I spoke with Dushyanth, a hospitalist (a doc that takes care of patients, you know, in a hospital), and he said: "I have a patient right now who's a Parkinson's patient. She's bed-bound, she can't really move, she's got ulcers where you can see her bones on her hip, her backside, and her left side. She comes back to the hospital every two to three months to treat these infections, which are now resistant to antibiotics. She's a good candidate for end-of-life care, but a lot of families don't do that; they expect their family member to be around forever. They don't want to have those hard conversations and mistakenly perceive it as giving up on their loved one. You just end up seeing consistently deteriorating until they code."
Coding is where the heart actually stops beating, and the person has to be revived by medical intervention, including CPR. It's when daytime TV doctors really strut their stuff. You get a person flatlining, a bunch of heroic medical professionals yelling "CLEAR!" and "COME ON YOU SONOFABITCH! FIGHT! FIGHT! FIGHT!" as if cheerleading was a medical discipline.
The Hollywood treatment gives patients really, really unrealistic expectations because the reality doesn't make for great daytime TV:
"Everyone thinks CPR is something like you see on Grey's Anatomy. That's nonsense," said Dushyanth. "All of a sudden, alarms are going off. 20 people are running into the room, all trying to get access to the patient. There are lines of people pressing on the chest as hard as they can, over and over and over. Bones break. Pads are going off to stimulate the heart, while there's another person in the front who's trying to put a breathing tube down someone's throat. Another's potentially drilling into the patient's shin to get intravenous access if they don't have it. Sometimes, given the situation, there can be blood everywhere, and I mean everywhere."
All of this might be worth it if there was a good chance that the patient would survive and return to their former selves. But there isn't. Us normies vastly overestimate the survival rate when a person needs their heart restarted, let alone restore their health. Most have some degree of brain damage. Studies that quote a slightly higher survival rate don't take into account comorbidities, which make your chance of recovery drop like a particularly heavy stone.
If you don't want that, you have to be really clear about what you do want. If people don't know your wishes, and you haven't thought about them yourself, you can end up with no one but the medical system to make decisions for you. Or arguably worse, having a person make decisions for your care without any sense of what your wishes really are. Dying is hard on families as it is; not knowing makes things that much harder.
In the book Being Mortal: Medicine and What Matters in the End, the author describes a particular patient who did answer those questions. He was undergoing an operation that might've left him paralyzed, and his daughter had to make a quick decision whether or not to continue it mid-surgery. The risk was that her dad would wake up, but he'd be paralyzed from the neck down.
Because she knew what was important to him, she was able to ask: 'Would he still be able to eat chocolate ice cream and watch football?' Now that's a hella weird question, but the patient's daughter knew his wishes. He thought life would be worth living if he could still eat chocolate ice cream and watch football. The patient, it turns out, didn't even watch a ton of football, but it was what mattered to him. Something as simple as that can save you and those you care for quite a lot of pain.
It's Not Just "Fighting" And "Giving Up"
Disease is one of those nebulous concepts we love to punch in the face. We don't treat cancer; we fight it. We don't care for heart disease; we declare war on it. Hell, we threatened to curb-stomp COVID into oblivion. There's some sense to this. People need to feel like their disease is something that can be overcome. It's comforting and provides real benefits.
The problem is, death isn't like that. Death is going to win, regardless of what Silicon Valley tells you. (And Christ alive, if there ever was a group of people who shouldn't be immortal …). When we think about getting anything but 'THIS. IS. SPARTA!' from a doc, we think of it as a straight shot into the ground. But it's not.
When people think of palliative care, if they ever have, it's understood as "giving up," as in giving up the fight against death. We hate giving up. We watched The Karate Kid, its four sequels, a reboot, and still went for a spin-off series for Netflix for a reason.
But palliative care is just a branch of medicine that focuses on relieving the symptoms of illness. You can get palliative care at any stage of a disease, not just at the end of life. Hospice care is a specific kind of palliative care that a person can receive when they likely have six months or less to live. This usually, but not always, means the patient has discontinued aggressive treatment so their team of doctors can focus on managing their symptoms well.
Palliative care docs are consultative; that is, they usually work within a team of physicians, and they start by asking questions. One doc I spoke to, Meredith, described the beginning of the process like this: "We always start a consult with the question of what you understand about what's going on with the patient medically. It gives us insight to the patient themselves, how understanding they are of their disease process. we always talk about what they're hoping for and what they're fearful of."
It's crazy how much outcomes improve when palliative care is involved at the end of life. For terminally ill patients, this often means they're happier, more mobile, and in less pain, but they also end up living longer. You can also get this kind of care anywhere, including your own home, which is where most people would like to spend their last days.
It's important to know about this stuff because doctors are often hesitant to tell people they're going to die, much less recommend palliative or hospice care. That's changing -- the professionals I talked to said as much, thanks to changes in medical education -- but it's still a hard decision: "Patients and their families are often uninterested in addressing end-of-life care, but even doctors fall into this," said Meredith. "They fight so hard for their patients to do well, and when they don't, it's hard to accept that and involve palliative care."
This kind of care is super-important at the end of life and turns out it's actually pretty fulfilling from the doctoring side: "I was shocked at how rewarding it was to provide that kind of support to patients and families," said Meredith. "I love the practice of it because it's what medicine was created for, which is to provide people relief from suffering."
When you think about it, it makes a lot of sense. When you're not dead-focused on prolonging life, you can make the most of the time you have left and spend your energy the way you want. It's hard to consider a life when you're dealing with discomfort and pain. Hell, try working in an office with a broken A/C, and see how well you can deal with big questions.
You're Not Alone In This
I wanted to write this because I'm a librarian.
That's not to say that librarians are particularly concerned with death (although we have been known to throw around a death curse or two if you mess with our books). But I wanted to prepare for a book club discussion of the book I mentioned earlier, Being Mortal. Book clubs are always a bit of a risk because A) you never know if people will show up, and B) you never know how well you'll lead the discussion. Sometimes, you just have to prep like hell and hope.
But I needn't have worried. The people that showed up that day had done a lot of great thinking about death and the end of life. They shared personal experiences with death that you'd never think someone would share with nine strangers and a librarian who's too loud for his own good. We were vulnerable and thoughtful, and for a short afternoon, we discussed how to die.
Whenever you try and learn something, especially something as important as how to die, the best thing to do is build a community. Book clubs, forums, classrooms, schools, universities; these are all communities we've built around learning stuff.
There isn't a death school (even though there are, interestingly, classes about death), so it's up to us to make them. There's a really cool project called Let's Have Dinner and Talk About Death, where people … have dinner and talk about death. But importantly, the set-up gives the conversation a structure with specific questions, needs, and recommendations, so you're not just swimming in an existentialist nightmare soup.
Remember, you don't need to do this on your own. Isolation made this last year hurt so much more than it otherwise would have. The uncertainty, the fear, the destruction of human life, was made that much harder because we were apart from each other.
It's one of the things, I think anyway, that makes death so frightening in our minds: we think we're facing it alone. We're not. If you're willing to talk, to listen, to be vulnerable, you can find quite a lot of life in this process we call death. Because in thinking about how to die, we understand, if just a bit better, how to live.
If nothing else, you can tell your family to donate your body to The Body Farm, the most metal way to support science ever created. And if you ask me, that's pretty rad.
Steven Assarian is a librarian. He writes stuff here. He'd like to thank his wife, who helped a hell of a lot with this article.
Top Image: Waldemar Brandt/Unsplash