Aug 31

Fixing to die.

Tag: BMJKal @ 3:40 pm

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?

I digress.

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?

29 Responses to “Fixing to die.”

  1. hydrantgirl says:

    Very accurate and good post.


  2. Christine says:

    Came over from twitter to read this – my profiteroles went down a treat after reading that – NOT. Joking. Found my mum dead in her chair last year and can understand all the points you are making after dealing with the shock of that. I agree though, we ARE sanitised about death.


  3. Sewmouse says:

    Mom died in the Hospital under “Hospice” care – lots of drugs, no conscious interactions, no IV – just a moist-air tube looped around her face, like oxygen, to her nostrils. She never opened her eyes, and the end was just one very long breath – and then no more.

    Of course, in some ways she had “died” many months earlier from the senile dimentia. I was afraid to sit by her side while she died, but I stayed for my Dad’s sake.

    I read enough, so I knew there might be some “unpleasant” things to deal with at the end. I’m eternally grateful I didn’t have to witness any. Yet. Hopefully never. Again I know that I cannot possibly ever do what you do for your career. Soldier on, Kal. You impress me.


  4. uphilldowndale says:

    And we cope with the uncertainties least of all.
    That is probably what frightens us the most, I’m convinced there should be the equivalent of NCT ante-natal classes for end of life, I’m not sure what would be the in the ‘labour bag’ though, I don’t think a bean bag and some frozen sandwiches would be appropriate.


  5. Aronnax says:

    Having watched someone die, the one thing I thought at the time is that it’s not like the movies. I at least knew a bit about what to expect, I watched the hypoxia induced confusion set in. I listened for the breathing to become agonal. No-one told me what to expect, but at least it didn’t come as a massive surprise. Is it wrong that when I see someone die in a film in a 30 second “I feel quite sleepy” I have a little wry grin on my face and think “if only it was that sterile (for want of a better word”?

    Cracking post.


  6. Bordermedic says:

    Another fine post Kal, I think they should probably go over that a little more in the begining of the EMS training. I really did not know what to expect until my first VSA.

    Oh and about the “eye thing” a little petroleum jelly on the eye lens works good, just smear some on with a swab. If you are at the hospital ultrasound gel will work as well.

    Keep up the great work.


  7. Win-Stone says:

    It’s not just the medical profession though Kal; the sanitisation of death is why I can’t sit through a war movie without a despairing chuckle to myself.


  8. Worrals says:

    I think television and film create false impressions in a lot of areas, not just medical. Surely the mistake lies with those people who allow themselves to be “educated” by entertainment. I think I’m lucky in coming from a family where talking about death did happen. I attended my first funeral at the age of four but I know my parents faced some flak for “exposing” me to such an experience. We women will happily swap birth stories with every gory detail thrown in, but I suppose it seems almost disrespectful to do the same with death, perhaps because there is no happy ending.

    A thought provoking post, Kal.


  9. Lucy says:

    Couldn’t agree more, Kal.

    Misleading the family by presuming that they probably know what awaits them is simply cruel. We propagate this myth that it is ‘nicer’ to die at home and patients’ feel they have to buy into this and demand their rights. Sadly, for many,the reality is nowhere as idyllic as it appears. The impact and exhaustion of full time care for a family member with utterly minimalist support robs many of precious time they could have spent in meaningful interaction. Instead relatives are so busy toileting, washing, changing, medicating, laundering and running the household that the end is rightly described as a blessed relief.

    What we really need in this country is more quality hospice provision for those who wish it and decent 24hrs palliative homecare with housekeeping support for those who want to die at home. This would to enable the family to truly ‘be with’ the person in the time they have left and meet the aim of a ‘good death’ for the pt without the family being exhausted and scared out of their wits.

    Personally, despite how much I love my home, I’d be incredibly reluctant to put my relatives through this and to leave them with the mess at the end.

    Interestingly, (to me at any rate!) I heard that the Americans are now moving away from ‘Do Not Attempt Resuscitation’ and using the term ‘Accept Natural Death’. While death is indeed natural there are few members of the general public who can really imagine what the natural process of dying looks like as you have shown. Using the terms ‘natural’ and ‘accepting’ also suggests it is just a normal stage of life and therefore probably not needing additional resources. Just like we bang on about pregnancy as a condition not an illness and expect women to be discharged and back to normal 4hrs post delivery. Or am I just very cynical?

    (stepping quietly off her soap box and heading to bed…)


  10. june says:

    I have found hospice care here in The States to be a big help. Both my parents died at home under the umbrella of hospice and I was told what to expect in plain, factual language. Hospice helped me make the contacts I needed for cremation of the remains and when death had come and gone and we were ready, I called hospice, they called the crematorium and all I had to do was wash the bedding. If I had wanted or needed someone to sit with me hospice was only a phone call away. They were a tremendous help.


  11. Angie says:

    I work a palliative/medical ward in Canada. One of our goals is to stablize a patient enough to send them to the hospice. But sometimes a death, even expected, is ugly and grisly. We try to focus on the person and keep them as comfortable as possible.


  12. Jane says:

    I know death
    … as quiet as a whisper or a single sigh
    or as silent as the morning sky,
    but each I knew, because we loved,
    all is well and all is one.
    But if I were not there,
    I hope there would be one
    who might say,
    because you’re loved, you’re not alone,
    and all is well, all is one.
    In memory of my Dad, who died, not with me, but not alone.
    With fervent thanks to all EMTs


  13. Tess says:

    Wish I had read this 10 years ago when I was with a friend who passed away, it was very traumatic x


  14. Veronica says:

    Food for thought as always Kal. I’m a nurse in Scotland and this post will make me think a bit more about how to prepare relatives who are losing a loved one. I’m work in a ward with elements palliative care and am about to start an MSc in palliative care. As for your question to the patient – I think it is still appropriate – today is today. Thanks for all the posts so far, this is my first reply!


  15. HaydensMum says:

    A year ago my Dad came to die, he was home for six weeks and despite the hard work it was the best, best possible decision. He went from a limp wreck of a man in a hospital bed (where the care was not good) to one who was able to enjoy (relatively speaking!) the last few weeks of his life. I was there when he died, I had no previous experience of death and I have no medical training and yes it was horrible, but I think watching your Dad die would be horrible anywhere.

    Sometimes perhaps to much information can be a bad thing, if people knew too much would it stop them being open to idea of allowing their relatives to die where they want to? You experiance something and you cope with it. At least my family have the comfort of knowing that we did the best for him and made him happy in the weeks before he died.

    We were also very luck to have support from the Ian Reene Nurses who were wonderful.


  16. Piper says:

    Hear, hear.


  17. Fee says:

    I agree. My aunt was discharged to “die peacefully at home”. No. It was not peaceful. It was a horrific experience which, imho, helped speed up the eventual demise of her elderly husband. He was under the impression that she would just go to sleep one night and not wake up again. If only. The best efforts of the Macmillan Nurses (God bless them, every last one of them) and the family GP couldn’t stop the end being a long drawn out nightmare. My uncle said later that if he’d known, he’d have asked for her to stay in the hospital, or be moved to a Hospice. He couldn’t even bear to set foot in the room for weeks afterwards.


  18. Aaron RN says:

    My thoughts exactly. After seeing my first dead body on a gurney in the ER after an anterior MI, I almost laugh at the depictions of death on TV and in Movies.

    There is much debate in America right now about the so called “death panels”.
    If only more people knew, maybe there wouldn’t be all this ignorant partisan shouting and protesting at town hall meetings while politicians try to give us some semblance of a true working healthcare system.


  19. Medic/Nurse says:

    I agree with you. I’m in the US and a ER nurse and a Paramedic. I see this problem from both the hospital and the prehospital sides. Death is not only sanitized, but hidden from most of the public. I know many people here in the US who are in their 20s and 30s and have never even been to a funeral, not cause nobody has died, but because they “couldn’t take it”. Death is something that our society has worked hard to eliminate, and the “failures” are careful hidden from the rest of society. I agree with you that there needs to be extensive education of the patient and family. Also, I see this huge push to “let them die at home”, making the family feel guilty for not wanting/or being able to care for them at home.


  20. Tom says:

    I’ve always been glad I didn’t see the final moments of my Grandma.

    As the cancer had spread from her lungs across to her spine, sneaking in and stealing her mobility without our realising until too late.

    There was no question amongst the family as to how this would go. Initially the family set up a round the clock watch, and her bedroom was transformed into a nursing home. Once the stairs got too much for us, the sitting room was given a fresh coat of paint, hospital bed provided. Help was arranged from the palliative care service, and further carers were payed for by us.

    My last memories of her are ashen faced, yammering because we’d layed her back with her legs crossed, and she could no longer articulate it. I had to drag myself back to university, and two days later she died. I’ve never decided whether I was better away from it, or if I’d been better there.

    On an aside, she was dead against (pun intended) going into that sitting room. Only after her death did we realise that it was the room the family had laid her mother up to die.


  21. Mummy x says:

    Totally agree. Dying is not nice. Watching someone die is not nice.

    I was totally convinced that I could get my Mum home and allow her to die in peace. Right up until she actually started dying (on the Friday afternoon). By 4 pm I was shitting it so much I couldn’t even go in the room with her on my own. The MacMillan nurses were fab but they never actually told me what would happen and I foolishly assumed that she would just go to sleep and pass away. It never occured to me that although we may want that, her body would have other ideas and that as she slowly suffocated her body would panic more and more and fight harder to do was it does, aka stay alive. I wasn’t with her when she finally went and to be honest I’m glad to fuck I wasn’t. However, I have been left with a profound guilt that at the end of her life I was too scared to be there with her when it ended and a profound sense of relief that I wasn’t.

    Fab post.

    Mummy x


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  24. Katherine says:

    Thank you, Kal. Another one for the Required Reading list. When is the book coming out, again?


  25. NinjaMedic says:

    I work for a hospice, and each and every time I’m called out to attend a death I explain to my patient’s family what is happening to their loved one and why. I explain why their extremities become mottled, what Cheyne-Stokes respirations are, what Kussmaul respirations are…as these symptoms manifest themselves, I explain them. I don’t want people to be afraid of what’s happening. Most hospice deaths are calm and peaceful (that’s our goal) but sometimes they’re a messy, noisy affair and people get scared or freaked out by what they’re witnessing.
    I had one family member who, immediately after their father died, said “but his face looks normal! He can’t be dead, his face isn’t blue!”. *sigh* Some people have very strange ideas about how people look when they’re dead.
    Hospice is, without a doubt, the most challenging work I have ever done. However, it is also the most rewarding; some of the best experiences I have ever had have been with my hospice patients. When I’m done with this degree I’m working on, I’d like to continue to work in palliative care. It’s highly underrated, misunderstood, and sometimes totally ignored, but it absolutely has a place in modern medicine.


  26. TSM says:

    Great post. I’ve never seen anyone die, but my sister is a nurse and she tells me that I’m fortunate. One of the best blog posts I have ever read.


  27. Juliet says:

    Thanks Kal, for the sensitivity and deep perception you demonstrated in this post.
    I watched my father die and, although I will never regret the decision to bring him home for his final days, there were moments that just weren’t pretty. They were frightening and confusing.
    Only when the morphine kicked in, after we’d called the doctors during a particularly terrifying episode when his body started to fight against the inevitable shut-down, was he able to eventually drift off painlessly and we were able to have the moments of “peace” they talk about.
    Death IS inevitable so why are we so afraid to face it in all its “glory”? TV and films have a lot to answer for.


  28. Becca says:

    I agree wholeheartedly with this (for me very timely post). Even when you are ready for the death (in fact actively wishing for it, to end the suffering for the person and the rest of the family), no-one tells you about the visceral panic that hits when you think it’s actually happening right in front of you.

    Not to mention all the stuff before the death itself. We had fantastic support from the district nurses, Marie Curie and Hospice at Home, but not 24 hours a day. We still had to work out what to do and who to call every time the situation changed and the current medication was no longer enough. We were the ones frantically reading instructions on how to dose the morphine she hadn’t needed the previous day while she writhed in pain. We were the ones making up impromptu continence solutions and holding bowls for her to vomit into. We were the ones who held her hand *knowing* she was in pain and waiting 2 hours for the out of hours doctor to give the injection she needed.

    I’m glad and proud that we succeeded and did everything (mostly) as she wanted, but it was *hard* and I would advise anyone thinking about doing it to get as much realistic advice as they could before deciding.


  29. Monique says:

    We are kinder to our animals. We put them to sleep. My mom died thirsty, anxious and still fighting to live. I had to leave and now feel so guilty because when I came back to her she had died 20 minutes ago.


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