This is an amazing story about an American’s death in London. I’m afraid I won’t live long enough to experience this kind of care in the US.
This Is How You Healthcare: American Death in London
And just in case the link above doesn’t work, I’m copying it here.
From: Sarah C R Bee
TO: The Healthcare Desk
Date: Feb 18th, 2013
This Is How You Healthcare: American Death In London
London, UK: It’s just after 9.30pm on a Tuesday in the intensive care unit of a hospital in south-west London. A vast spaceship dashboard of drug delivery systems is silent, monitors displaying the word ‘Privacy’. I sit by the foot of the bed while the other four crowd around the top. An empty bottle of scotch is propped in the sheets that cover the stricken, thin form of my father, along with a crucifix on a chain and a Dr Seuss book. I gradually become aware that he has died.
My father’s de facto nephew Charlie, a boisterous Irish lad in his mid-twenties, starts up a Hail Mary over the body of an atheist of Jewish extraction as if it might push life back into him. My aunt weeps. My half-sister in a red woolly hat, herself on six different types of medication, is on the phone to her mother, brightly telling her what she had for dinner. (It was stuffed aubergine.)
Charlie’s younger brother Tommy, a sweet skinny boy of 20 who I last saw when he was a six-year-old potential serial killer, dissolves into my arms, sobbing. Positively radiating serenity, I stroke his head and let his grief wash over me. I have a headache from the scotch we’ve all been sneaking around the bed. I hate scotch. It was Bill’s drink. It was Charlie’s idea. I look at my father’s body. He looks very dead, but then he has looked dead to me this last week, from the first time I saw him crumpled in the sheets, plastic tendrils curling from his head, one green eye stuck half-open.
I am quite aware as this is happening that it probably represents the single biggest headfuck and heartfuck of my life, and also that if it were happening in the US, the place of my father’s birth, it would probably be considerably worse.
In the UK, we treat any old fucker for free. This is why that is important.
* * * *
The place of Bill’s death is a foundation hospital, not directed by the government. It’s a beautiful building, with open corridors around a vast central atrium filled with natural light and dotted with sculptures and fish tanks. You can’t get lost in it, nor can you feel that antiseptic claustrophobia you get in hospitals.
The tax-funded UK National Health Service is now 65 years old. Foreign nationals get free treatment when they’ve been here for a year or otherwise have legal residency. A San Francisco native, Bill rocked up and made a home for himself in London in 1976. Since then he’s had three (count ‘em) artificial hips and been treated for cancer of the larynx, and is now spending his final week in intensive care. When I saw him last year for the first time in ten years, to interview him about the election for NSFWCORP, he mused on how much this country has shelled out to keep him upright: “Oh man, if you were to add up what the NHS has spent on me, it’s phenomenal.”
He was a charming, damaged, charismatic, fiercely intelligent, dissolute individual, who lived entirely on his own terms. As a professional gambler, it is unlikely he paid much if any tax in 37 years. He had no will, no funeral plan. He never did fill out the forms necessary to vote in the last election, or the one before that, as I discovered. He just hated forms. I could sympathise. Had he stayed in the US, it is – how you say – dollars to doughnuts he wouldn’t have got it together to fill out the forms, and would have had no health insurance. He considered the US system “absolutely unmanageable”.
* * * *
Bill goes into hospital on Tuesday complaining of dizziness and disorientation. We talk briefly on the phone and he sounds chipper as a chip. Some little heart arrhythmia thing, chest infection, in overnight for observation, no biggie. By Thursday he has plummeted into the subterranean limbo of the gravely ill, having most likely suffered a heart attack. He is being hauled from acute assessment up to the ICU.
Thursday afternoon I sit by his bed. Talk to him, say the nurses, he can probably hear you. With this type of sedation, the hearing is the last thing to go and the first to come back. I try. Hi, Bill. An inveterate gasbag, I find I’ve got nothing. I am accustomed to showers of aphorisms and miles of monologue from him. There’s nothing to respond to.
An hour by a bed in the ICU is long. I bring some Vonnegut to read to him – I figure it’s the sort of thing he might go for. I don’t even open it. I just sit.
Late in the evening the doctor comes to talk to me. I’m the only one here so far. The friend who brought him in has yet to return, my aunt is on her way from Washington.
Bill’s heart is fucked, hammering away at 150, 160, and it’s fucked everything else. The kidneys are fucked. The liver is fucked. This could go on for days or weeks, the doctor says: “But my feeling is that he will pass away tonight.”
So this is how it ends. I had always figured this fighty bastard – whose own father died two months ago almost to the day, aged 96 – was impervious to the usual quotidian sources of bodily doom. He beat cancer, shrugged off booze, swore that “when they come for me, which they will, I’ll get ‘em with my stick”. When he goes, of course he’s going down a manhole, under a Mercedes driven by a coked-up supermodel, into the belly of an escaped jaguar.
I’m prepared for this. I am sad, but ready. The distance from absence to departure doesn’t seem so far, and it sucks, but it’s OK. I go to bed in the small, snug visitors’ room – the existence of which amazes me – in assurance they will wake me when it’s time. Next morning he’s still there. He will cling on for five more days. The notices will say ‘a short illness’, but they don’t give any sense of how long and hard that can be.
* * * *
So after I thought it would end, it starts. There are many phone calls. There is sitting about. There is eating. There is talking and sleeping and a lot of drinking. There is comfort and joy. There is wartime intimacy with people I have met perhaps twice or haven’t seen in 20 years. There is a sudden, completely different way of being.
Occasionally I sit by Bill’s bed. I don’t do small talk even when people are awake, and wittering away to an unconscious form seems too much like praying – addressing a presence you can be almost certain is not there. The return signal, the connection which was only ever faint and intermittent, is offline. There are only the formal, idiot bips of the monitors.
I’m not about to do any big talk either. I’m not going to say things I don’t mean. He would not hold with any sentimental bullshit, and nothing remains unresolved. I told him ten years ago that he hadn’t been the best parent, and his eyes flashed with momentary outrage, and then he nodded meekly. This tiny gesture represented a huge leap of humility and contrition for him, and I appreciated it as such, and always will.
This, and the fact that he taught me to catch ice-cream drips when I was four, and that he was a lonely old man who was overjoyed to see me a few months ago, who left a string of witty and sweetly anxious voice messages when I flew back from New York just after November’s storm (“I’m a little concerned – how are you where are you when are you? Do I have to send the boy scouts out after you?”): these things have brought me here and kept me here. A sense of duty and basic humanity, some fondness and respect, and the desire not to brutally ditch vulnerable friends and relatives and have to live with the idea of myself as a cold-hearted cunt – I mean, I’m not, and I wouldn’t – are what will keep me here after today.
But it will be hard. Processing what is going on, what has gone on, what could happen, and adopting this role and living up to it – that’s going to take everything and possibly more. I can see it.
There’s nothing to say, so I say nothing. I put my hand over his hand for a bit. The skin is cool. It feels like a small lamb joint. I feel ridiculous. I feel ridiculous.
* * * *
This is life in hospital. Within 24 hours, it seems like all there is. You detach and float away from yourself. You start to alter. You start drinking coffee for the first time in years. You can’t think. Exhaustion makes a moron of you. It is a place where intelligent adults sit around trying to figure out the simplest things – dinner plans, medical minutiae that don’t really mean anything and that you can’t control anyway, how to use a mobile phone – and if you wait a few minutes, the original unanswered stupid question that kicked off the whole sorry bollocks will carousel around again, grinning like a peeling painted horse.
You experience periods of blissful calm, explosions of fury and anxiety, tremendous impulses to behave badly in the face of disgusting boredom. You max out, faster than you thought you could. You feel useless to yourself and everyone else, except for when you feel so exactingly in control you could fly a plane. You can’t tie your shoes. You can’t spell ‘shoe’. You can’t fill out forms. You can’t think. You don’t know what money is. You can’t.
* * * *
One of the registrars presents with a comedic instance of medical nominative determinism. He might as well be called Andrew Bedpan. He is the kind of hearty-cute that makes me want to get to know him under other circumstances. For now, I just grin. I grin helplessly when I try to look at him. He tells me terrible things about Bill’s condition – hovering between grievous and hopeless – in a sympathetic tone. I grin. I apologise for grinning. Bedpan is cool. He probably gets it a lot.
* * * *
The nurses, all casually wonderful, call him William. Everyone else calls him Billy.
The doctors are amazing. They are frank, they are kind, they are judicious. They negotiate the treatment of an almost-lost cause deftly and delicately, endlessly tweaking dosages, consulting, tweaking, considering. They operate within uneven medical and ethical restrictions, balancing responsibilities, managing expectations. They respect life and death equally, and they allow death to take over the second they see that inducing life to continue would be abominable.
He is obviously very tough, says the doctor. At this point Bill’s heart is only functioning at 10 percent. They are going to step down the drugs – adrenaline, noradrenaline, and something they rarely use that sounds like ‘leaveusaminute’, much to my amusement – and see if he responds. See if he rises to the challenge of continuing to exist. If he doesn’t, “we’re not going to jump up and down on his chest”.
Bill’s older daughter is here. She asks the doctor if Bill can dream. A great question. The doctor says most likely yes.
I dream, myself, about a blue whale in a vast tank. It is the biggest thing there has ever been.
* * * *
The main things that keep me sane are the airy beauty and peacefulness of the hospital building, messages from friends and family far away on earth, the mundane magnificence of the staff: and the knowledge that all of this is free and taken care of and I do not have to fill in a single fuckforsaken form or bust one precious braincell worrying about how I might have to find money to pay for the futile care of my dying deadbeat dad.
I return to this miraculous fact many times a day, in exactly the same way that I return often to the little visitors’ bedroom, lock the door and curl up on the bed. The knowledge soothes me like clean sheets and heat.
Imagine, I think in the middle of the night. Imagine if I had to worry about that stuff. With what, exactly, would I worry about it?
* * * *
Day whatever in the ICU. Things change minutely. The position of tubes. Numbers and percentages. The shimmying dots of moisture in the breathing tube. The delicate dance of side-effects and counter-effects.
Blood swirls precisely around the dialysis machine. Bags of fluid hang like inert jellyfish. The green numbers show 167, 168.
You look tired, says the nurse. I do. I am. Have some toast. I decline politely. She badgers me. Go on, just one slice.
Tea appears. Sorry, it’s NHS tea, it’s awful. Get out from here, it is delicious. Two slices of toast follow. Little airline pods of butter, and jam. AND JAM.
Bedpan materialises. Hey, Bedpan. Those scrubs really bring out your eyes. He asks me how I am. I am drunk on jam, is how I am. I beam at him over the artificially inflating ribcage of the man who gave me life and then mostly left me to it, and then I swig tea.
“They ask how I am,” said Bill that one time, “and they give me the jam.” He was very funny.
Bill coughs once. His whole torso seems to lurch. For a moment I think he is going to spring off the bed and ask all assembled what the fuck.
* * * *
This is how you healthcare. It’s care of those clinging to life and care of those spinning and reeling in their orbit, struggling to adapt to life in a new airless atmosphere, a place with its own physics. There’s no division. At one end, there is a malfunctioning heart, so you give it the right dose of the right drugs. At the other end is an exhausted relative, so you give her toast.
By now I am convinced that the NHS – and I hyperbolise, but only slightly – is the greatest achievement of humankind, the nearest we get to a benevolent deity, a goddamn superhero. It is an imperfect manifestation of a beautiful ideal – free care based on need, free care for all, without judgement, without reservation.
However long this goes on for, they’ll continue throwing resources at this individual and never show a single sheet of figures to any of his relatives. Not because they’ll get anything back, but because this is what the NHS does. It’s free care for throat cancer sufferers who only gave up smoking four years afterwards, for drinkers who were told 35 years ago that if they didn’t quit drinking they’d die. Free care for American immigrants, for jerks and gents. Free care for parents whether they showed up or not. Free care for guys who tried to try. Free care for the only father I will ever have.
* * * *
With 21 hours of Bill’s life left, though as far as we know he might still be here in March, I get home at midnight to find my dog staggering as if drunk, getting up and crashing to the floor again, one eye twitching madly. At first it appears that the dog has swallowed some meds that fell out of Bill’s overnight bag, which I’d brought home (no PJs in the ICU). My absentee father’s final gift to me is to kill my dog from his own deathbed. I have hardly spent a week without my dog in nearly a decade. I have probably spent no more than a month in the conscious presence of my dad in my entire life (I don’t think my first year or this last week count).
This is when I lose my shit completely.
It transpires the dog has had a kind of canine stroke, a complete coincidence. The dog has health insurance, making him better off than 15.7 percent of Americans at last count. His own hospital stay is covered. This enables me to recoup just enough of my shit to stay in the game and not just tell everything to go fuck itself because fuck it.
As soon as the vet rings off, my aunt calls. They are withdrawing the drugs at last because there is nowhere else to go. It is time to say bye bye to Bill.
* * * *
Bill’s breathing, aided by ventilator, quickens after I arrive. It may be because he wants to say something, says a new nurse. Tell him you’re going to be OK. I literally cannot comprehend what she has just said to me. I say nothing.
Everyone gathers. Paraphernalia accumulates. Drink is taken. For a time it’s just me and Bill and the boys. Charlie sighs and I hear hope bolt through his mouth like a greyhound out of a trap. “Come on, wake up, Billy,” he says, tearfully. He must be saying this to himself, but if Bill really can hear I don’t want him to worry that anything is expected of him.
I lean towards the bed. “Bill,” I say, “don’t listen to these boys. You do what you have to do.”
There’s a slightly shocked silence, some of it my own, but they defer to me. I’m the next of goddamn kin for chrissakes. I’m kind of a big deal around this bed. Surely the old sod would be proud.
* * * *
Bill dies of heart failure, his skin the colour of sand, his mouth open. One of his tear ducts leaks, because none of this is dramatic or absurd or unbelievable enough.
Tommy cries and cries onto my shoulder. “That’s your old man,” he bawls. Yes, it is. The nurses start gently removing tubes. Charlie babbles about making him look nice please, starts trying to get Bill’s mouth closed. The monitors display ‘Standby’. Standby. I feel nothing. I feel something.
* * * *
Whatever Bill meant to me as a person – and I still don’t quite know how that tune goes – I was overwhelmed with awe and gratitude at the infinite care and gentleness shown him (as well as us) as a human being by the health care system of this country. It is nothing less than life-affirming.
I cannot imagine how any civilised country could do better. I cannot see how any country can be truly civilised without it. If my family and I had had to deal with the vagaries of insurance, forms, debt, extra disaster or extra anything, I suspect we would have proceeded directly to becoming burdens on the system ourselves.
Welcome to earth, young man… It’s hot in the summer and cold in the winter. It’s round and wet and crowded. At the outside, Joe, you’ve got about a hundred years here. There’s only one rule that I know of: Goddamn it, Joe, you’ve got to be kind!