An article over at the New York Post on end-of-life care caught my attention this morning. You really have to read through the whole thing to get the full impact of it. The issues raised here resonate with me, in both my experiences and my beliefs.
There was a time when I would have told anybody to do anything necessary to keep me alive. I think we all do at same point, as we go through that phase of feeling immortal. I even left that instruction behind, along with others, the last time I went in for surgery. I would not say that any longer.
Back in 2007, my grandmother died. Her last years were spent in a flurry of progressively invasive medical care as one body system after another failed. I thought for several years that she would die any time, and I would expect to get that phone call saying, “Your grandmother is dead. She died in her sleep.” Instead, I would hear that grandma had a heart attack, spent time in the hospital, got more drugs, and went home. Now grandma is in congestive heart failure, she had another hospital stay and got some different drugs. Now her kidneys are failing, so she needs dialysis and more drugs. She had strokes, mini-strokes, illnesses that turned severe. It was one thing after another, and I’m glad that I was out of state at the time and couldn’t see her regularly. The thought of my feisty, crafty, Betty Boop-loving, gumbo-cooking grandmother reduced to that state of living past her body’s time limit makes me very sad.
At one point, Grandma got so sick with what I think was a respiratory infection that she ended up in the ICU on a ventilator, and the doctors weren’t sure she would make it. She did make it that time, but as soon as they extubated her, she said, “Don’t you ever do that to me again!” (I wasn’t there, only hearing about it second-hand, but I can just see her face and hear her tone of voice when she did it…Grandma was PISSED!) I talked with my mother about letting her go, about letting her die peacefully instead of trying to fight it so hard. It wasn’t our decision though, and I have to accept that my grandfather was not about to let go of one second with his beloved that could be gained by intervention.
I have other stories I could tell. I could speak of the things I saw done to my mother when she was in Critical Care during her chemotherapy treatments, the indignities she suffered, the way every doctor seemed hell-bent on treating her as a statistic in their own subspecialty instead of as a whole woman with integrated body systems, the way it was so hard for me to get the information I needed to make decisions for her when she was incapable. I could speak of the stories told by my friend Angel back in Texas about his experience with cancer in his teens, what it felt like to be resuscitated by paddles after cardiac arrest, how he never again wanted to be saved or rescued or placed in intensive care.
Ultimately, though, the stories will never be enough. All of this comes down to our attitude toward death as a culture. We have removed ourselves from death, banished Her from our perceptions thoroughly. We mourn and cry at the deaths of those who have lived full lives and died at their due time, as if death does not come for us all in the end. Death is never natural anymore; it always has a cause, and that cause is always preventable. No death is ever acceptable. We live in a padded-room society swaddled in rules, regulations, safety precautions, and securities, determined that life-everlasting must be possible if only we do all the right things. Then, even after we die, we embalm, we entomb, we fill the bodies with chemicals and then enclose them in expensive, waterproof concrete grave liners, maybe even steel-lined graves, in the expectation that at least the body will never rot even after the spirit has left.
I may not be the gothiest goth you ever met, but I have regarded myself as goth for a long time for one simple reason: I accept and embrace death and the darker things in life. I wish that society could come just a little over to the dark side with me, enough to bring balance back into our culture. I’ll grant you your padded-room life if you want it, as long as you don’t impose it on me and my family. In return, I’d like to have some respect for the end of life, the expected end we all face. I still want to rage against Chris’ death and expect to spend a long, long time still coming to terms with it. But I want grandparents to die at home, in their beds, surrounded by family, not in hospital filled with tubes surrounded by medical professionals and beeps and lights. I want it to be easier for a terminal patient to say, “Enough!” and stop treatment, going home to die or even choosing to hasten death on their own terms.
And when old people die, I want to celebrate their lives and share memories with those still alive, not be expected to cry and mourn over something that is a perfectly natural part of life.
My mother told me that she wants me to scatter her ashes from the top of the Mt. Crested Butte ski lift when she dies. I like that idea. Myself, I think I want a green burial somewhere quiet and peaceful, or maybe an illicit burial in my kids’ backyard with a tree planted on top (then I can be a vicious libertarian rule-breaker even in my death!). I plan to celebrate all the wonderful parts of my mother’s life when she leaves us for good, and I hope somebody throws one helluva wild party when I go. No crying allowed.