Woman ill in hospital bed
I can’t leave this unspoken anymore. There is an elephant in the room. There is an elephant in every room, and not a one of us is brave enough to admit it out loud lest we stir the pot, finding ourselves at the receiving end of a whole lot of grief.
Medical procedures and pharmaceuticals extend our lives far into the frailest years, and, more often than not, this creates a lousy situation. In short: people these days are living too long. A long life is not a victory if it is an unpleasant one. Consequently, I believe that every adult should have the right to choose a humane and legal death.
My mother is living on and on in the isolation of her house. Granted, she’s got the deer and the birds and the woods outside her windows, she’s got her British murder mysteries, and all of the 70s and 80s sitcom reruns to entertain her. She’s got The New Yorker to read (and read them through she does!), she’s got her drink every evening, and she’s still able to prepare food (she knocked out Thanksgiving dinner again this year, a true feat in that her right knee is now quite literally bone on bone). But she’s not able to come and go and she did only months ago. She is stuck inside her house. It can’t be easy. But there’s no reason to highlight this. She knows. And she has adapted. People are really good at that.
Now she is faced with a knee replacement at the age of 88. (She has postponed dealing with this for a long time. That’s understandable, but at this point there’s no avoiding it.) It surely stands that a woman of her determination will come through it ok, but if not, then what? And, even if things do go well – what then? We need to make some modifications to her house. She knows this, and we discuss some of the logistics with success. But when I move too fast, offering to do something for her, she gets angry, and says I’m taking over her life. And she has drawn the line at care. Somehow, this future scenario does not involve any outside party coming in to assist her with things. She fights me on this, saying I write her off as incapable. Quite the contrary; I know that she is clever and resourceful, capable of surprising things in light of her limitations, but she is human, after all – and post-op, she will need care, one way or another.
I believe that the thing she’s battling with is not so much the details themselves, or that I am taking over, but rather it’s the beast that is pushing its way into the room which frightens her. I wish we could just acknowledge the creature, and make plans accordingly. It might make the beast less menacing.
Mom and Elihu both know my feelings about death. I believe that in a fully realized and modern society, a lucid adult should be afforded a medically efficacious, humane and affordable – and legal – death at the time of their choosing. Both Elihu and my mother warn that I might not avail myself of such a service when I become old and frail. They posit that when I am a very old woman, I might not wish for the end. Yes! I completely agree! How can I know possibly know how I’d feel in that moment? I can’t. But what I do know is that I want the option of a humane – and legal – exit.
I’m gonna stop you right now if you’re tempted to spout the reactionary “It’s a slippery slope” response. While the more litigious or philosophical among you may have specific points to support your case, I believe that for the majority of people, that response is born of fear. The religious among you will also take issue with this for your own reasons. This is where we will likely part ways; I do not believe a loving god would deny its children this most tender of mercies. I won’t be getting into the arguments here and now, but rest assured I’ve studied all manner of debates on the subject, a multitude of points and counterpoints.
I’ve been thinking about death for years. I’ve seen many videos of people’s final moments (a profoundly generous gift on the part of both the people themselves and their families). I’ve read many books, and listened to numerous talks on the subject. What helps give me the courage of conviction to write candidly about this is the number of people with whom I’ve discussed the topic, and the number of people who have admitted to me, in the safety of a private conversation, that they heartily agree. People should be able to choose their exits.
As a musician I work a fair amount in nursing homes, and I see the saddest outcomes for individuals who’ve lived the most glorious lives. After I finish performing, I always make informal rounds, visiting folks who I see to be awake and who welcome my brief intrusion. I’ve been playing at one facility for nearly seven years, and, sadly, some of the residents are still there… They are bedbound, screamed at all day by TVs, blaring at top volume. It is cacophonous. It is inhumane. It is terrifying.
I can recall meeting a fellow who had taught chemistry at Columbia University; he spoke about his life as a child in a small town in Finland. He recalled the fish that his mother had made, and told me how much he missed that. He told me about the research of which he was a part, he told me of his three children whom he’d raised in the city, now all gone. Dead. He and his wife had long since divorced. Was she dead too? He didn’t know. He was well-spoken and brightly recalled his memories which I followed with great interest. And yet here he was, bedbound, soiling himself and unable to move, dependent upon an over-worked and underpaid aid to restore his comfort, to say nothing of the basic dignity he’d lost in the whole mess. Bells and blinking red lights were always going off in the hallways; it was impossible for the staff to keep up with the need.
(We have all visited a relative in one of these places. And if you find the higher end joints a little off-putting, just imagine this bottom-of-the-barrel venue. No one in his right mind would ever send his mother to such a place. It goes without saying no one would wish this outcome for themselves, either.)
After I have finished with my visits, I invariably end up speaking to the staff. At the conclusion of our conversations, I always pose the ultimate question: If you could choose to end your life in a safe and legal manner, thereby eliminating the need for living in such a place, would you? And of the dozens of people whom I’ve informally polled, not one has ever answered differently. Every single person has said that they would choose a humane, safe and legal death over life in such an institution.
My mother comes from a generation which was raised to live in hardship without complaint. (Use it up, wear it out, make it do, or do without.) This generation was encouraged to be self-sufficient and responsible; living in this manner is often a point of pride. It makes sense then that her needing or asking for help feels wrong. Perhaps like a tiny failure. Hard wiring is not easy to undo. So at the end of her eighth decade, it’s a bit late to expect that my mother will change her way of thinking. I get it. Additionally, a woman like her who’s done an expert job at hosting hundreds of people over the years might have a hard time letting go of that authority and yielding up the most basic tasks to another person. It might also be that accepting help means that true frailty is not far behind. And, however heartbreaking it may be to conceive, that really is the truth.
Yes, I can understand that it’s got to be frightening to be in her shoes. I think we’re all scared of finding ourselves at that place in our lives. And yet so few of us have the courage to admit our fears aloud. Most of us keep silent; we stifle our gripes and concerns. We suck it up. And I really wish we didn’t.
It’s my hope that people all across this earth can learn how to speak candidly and caringly about the end which awaits us all (as well as the feelings of uncertainty that precede our final days). My mother and many of her generation may find self-advocated death an abominable thing – and certainly my mother is likely not the type to avail herself of such a service were it even available – yet I still assert that a humane and swift death needs to be the legal right of every rational, healthy adult.
Would you have surgery without anesthesia? No, you would not. Would you have your dog suffer? No, you would not. You would use medical tools to minimize or eliminate suffering. If you’re a doctor, you will likely cite the “do no harm” bit of your professional oath to me in protest. Well, I believe that preventing someone from obtaining a wished-for, safe and legal death at the conclusion of a long life is doing harm. Quality over quantity. It’s simply one step beyond a DNR. But, as things stand in December of 2022 here in the US, it’s one hell of a big step.
The elephant will seem far less menacing when we can get her fed and comfortable. She may even turn out to be a welcomed guest. But we’ll never know until we can all agree that she’s sitting right here in the room with us.
Drawing by Jules Bradbury
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