This article previously published on the BMJ’s Doc2Doc forum.
Is it time we taught our patients how to die?
Death is not an attractive spectacle, a witness at a recent cardiac arrest was most disturbed not by the fact that the women on the floor had died, but by the inhuman colours her face had turned as she did so.
Grey then blue, purple and streaks of black rising around her throat like dry rot.
Similarly, the fountains of vomit and loose stools that poured from both ends of the deceased as everything relaxed and fluids found their own levels were clearly an unpleasant surprise.
We, in the medical profession, are rather blasé about the whole affair; happy enough to come to the end of a cardiac arrest without having to visit the sluice and wipe something ghastly off our clothes.
We’re used to the sound of fluid clattering up and down a trachea, hauled about by agonal gasps. We’ve grown accustomed to the flaccid, chilly flesh and the way that even simple manual movements of limbs become nearly impossible.
We understand the etymology of the phrase “a dead weight”.
We are clinicians. We are professional and cool and sharp-edged. Death and all its paraphernalia does not frighten us. The vanishing of an entire lifetime’s emotions, thoughts and dreams is simply a curiousity to ponder on during one’s break.
It spooks the hell out of the public, though.
The telly is completely to blame. TV and film are desperately keen on portraying birth and death as oh-so-terribly clean affairs. Babies are born, apparently three months old, with an obligatory smear of red goop on them. People either die anonymously in enormous explosions or in protracted quiet scenes where we get to stare at their faces as they shuffle off. Their eyes close and a little dribble of blood trickles over their lips.
Why does everyone who dies slowly in a movie have some form of upper GI bleed?
The point is, after any on-screen death, the deceased is looking as clean and sanitised as a made-up corpse in a funeral home. They do not poo in their pants of fill their mouths with Kraft-Cheesey-Pasta-Esque strings of phlegm.
They definitely don’t leave one eye steadfastly stuck open no matter how many times you demurely pass your hands over their face, leaving you with the dilemma of “I wish I could close that lid, it looks bad, but the only way to do it is to poke this dead man in the eye…I’m pretty certain I’m not supposed to do that.”
Nobody on TV gives half an hour of gasps before giving up, or slowly dwindles away into absolute bradycardia, still talking all the way along. You’ve never seen the hero’s plucky, yet ill-fated, sidekick face his demise in a thrashing, babbling hypoxic mania.
The public understand the concept of “dead”.
But not “dying”.
And it’s screwing around with our terminal patients.
Palliative care is a wonderful thing and an area of medicine I know I could never work in. I like my pre-hospital care, thanks. Wham-bam, fast and dirty.
I couldn’t work in a hospice.
“How you doing this morning, Mr Patient?”
“Still dying, thanks, Kal.”
I come to cast light on a situation, rather than make light of it.
Some hospices let people home to die without warning their family what dying is really like. They wave the patients off into an ambulance with cardsand flowers, nod a lot and assure each other that “it’ll be nicer for them, he can drift away with his loved ones.”
In what other situation would we trust the pivotal moment of a patient’s care to their family? Neuro? Gynae? Colo-rectal?
“Just punch a hole below the navel and have a rummage about…you’ll get the idea.”
These palliative patients make a final brave stand, they face the transport back home, into a hospital bed that is alien and incongruos in the living room of their own house. They plan to spend their last days with their families.
But we need to be warning these people that it might not be like the movies.
How can we ask laypersons to tell the difference between agonal gasps and the fact that Grandad is choking on his Werthers’ Original and would, in fact, last another week if you’d phoned an ambulance out to clear his airway?
Why aren’t we warning them that, if the call an ambulance in a panic, they’re going to need that DNR in their hand when the crew comes in, lest they have no choice but to commence resuscitation.
(I am eternally grateful to the son of a suspended woman with end-stage cancer who told me “If you touch my Mum, I’ll batter you.” I had no desire to start CPR on a woman who had clearly suffered enough, but had no choice in the absence of a DNR. His threat of physical violence gave me exactly the out we needed to leave the room. I didn’t linger to thank him.)
Who is it that we need to kick in the pants to make sure that the newly-dead corpse of their family member won’t look like a body in a coffin, but a grey, limp version of the man they loved, devoid of any of the sparkle and chatter that made him that great guy everyone’s talking about?
This is not a nice thing to learn.
can’t we warn people before they’re dealing with the death of their loved one as well?
Shouldn’t this be a standard across the board of palliative care?
Shouldn’t we be teaching people how to die?