I have been thinking about writing this post for a long time now, struggling with the personal ramifications of it in more than one way.
Then earlier this week a friend posted a link to an op ed piece in the New York Times about the topic and a fellow writer wrote of her personal journey with it yesterday.
I knew it was time for me to write about it as well.
There's a conversation that needs to be had in every home in this country, that isn't being had in nearly enough of them, and even if it's being had those who need to listen aren't.
We need to talk about dying.
We need to talk about it ahead of time, before it happens. Before loved ones are connected to machines to keep them alive and before urgent phone calls force our presence. Before decisions must be made, we need to talk about what they should look like when the time comes. We need to talk about what others want, not what we would want for them.
These conversations are not easy ones to have, certainly not in a society such as ours that places so much value on youth. We don't like to think about the fact that death is the only thing in this life that is certain. We talk and talk and talk about hope and fighting diseases and combating illness and not nearly enough about which of those battles should even be waged in the first place.
We scare ourselves and each other with very important notions like quality of life, palliative care and hospice. We hang onto odds that are stacked against us so high and so far reaching that we know we'll never overcome them. We keep pushing for treatments that we know will never work.
We shield children, we confuse them with words like sleep. We protect them from this very essential part of the circle of life. And in doing so, we do not only them but ourselves a vast disservice. Someday those children will get a phone call in the middle of the night that changes their life.
Our society exists as though denial is good enough. Life exists in a vacuum wholly separate from death.
By far the most fascinating college course I ever had the privilege to take part in was one on death and dying. So many other societies in the world operate so differently than ours. Deaths happen at home, with family. They are part of life. Expected. Often welcome. Celebrations are joyful.
Here, most people die in hospitals. Connected to machines. Away from family. Too often alone.
Something like 30% of health care expenses are incurred in the last year of life. The statistics are hard to nail down, and a source of controversy themselves because we never want to believe that our family member was the one accumulating a huge bill because of heroic measures that bought limited time. We want to justify doing everything possible in every individual case, but can't stomach the price we pay as a society for living that way.
I've watched people die. More than I'd care to. I much prefer seeing the beginning of a life, but the end is just as, if not more important than, the end.
The last, my father.
In his case, he got a trial run at death. Which sounds terribly morbid and blase, I know. It's the truth.
Just less than a year before he passed, he fell into respiratory distress as a result of the chemotherapy treatments he was receiving. Panicked phone calls in the middle of the night and a plane ride later, I was at his bedside when the doctor ordered the CT scan of his brain to see what was going on. If he'd been oxygen deprived too long. He pulled out of it, and lived. Really lived for that last year.
He learned so much, we all did, in those days. We knew this wasn't how it was supposed to go down. He knew this isn't what he wanted. He knew that he never wanted to be connected to those machines again. He knew that when the time came, he wanted to be home. With us. In peace.
He wasn't really ready to be done fighting when his body was, but he knew that once he'd crossed that threshold that it was time. He knew when it was time to say no more. He knew that he wanted to be alert and aware for as long as he could. He knew that he was going to have a say in how this all ended.
I knew that I'd have to be there to help him. I knew that I'd be the one that had to sit him down and have him sign the papers that meant we'd just let him go. I knew that I could stomach being in the room when he asked the doctor what it would feel like to die. I knew.
As difficult as the entire experience was, it was beautiful too.
This was his death, and it was a good one.
Without the events that took place almost a year before, though, I'm not sure what would have happened.
I look around and I see people dear to me in such a different place, and I wonder. Would things be different if they'd had a trial run like he did?
We can do better. We should do better. We need to do better.
We, as a society, need to accept that death is very much a part of life. It shouldn't be feared and put into a sterile room. It can be welcome relief.
We, as a society, need to ask the hard questions about what our loved ones want. Then we need the courage and conviction to respect those wishes. To do the right thing even when it's heart wrenching.
We, as a society, need to embrace the amazing world of hospice. We need to stop believing that treatment at any cost is the way to go for everyone. We need to see value not just in time, but in the quality of that time.
First though, we need to sit down with our families and talk. It is imperative that we do this, and that we don't wait until it's too late to ask someone what they want.
Then, you need to get it all in writing for legal purposes.
This is the conversation that needs to be had now.
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