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Independents' Day

Can we talk about death?

Dr Shaba Nabi

It seems we can discuss just about anything these days – money, sex, mental health – but we still cannot talk about death. Despite being besieged by a deadly pandemic, society is still outraged when GPs try to open up these dialogues, so we are understandably anxious about some of the media reporting of our advanced care planning.

I faced this angst just over six months ago, when I received an email from my family to say my mum’s suspected dementia had been confirmed on a CT scan. It was no major surprise; she’d been forgetting what she ate for lunch and becoming increasingly withdrawn.

At the time, I gently broached the issue of advanced care planning but was met with some resistance. At 88, mum was still climbing the stairs five times a day to read her prayers. She was fully mobile, had no significant medical conditions and was on minimal medication. I understood my family’s reluctance to discuss end-of-life care issues, despite dementia being a terminal condition with an average life expectancy of less than five years.

Although such emotions are natural, I still felt extremely uncomfortable about the thought of my incredibly proud mother losing her dignity at the end of life. This was a woman who hand-washed the clothes of her nine kids on a daily basis and kept an immaculate home. A woman who, on hearing of a friend’s catheter insertion in hospital, told me she would never wish to lose control of her hygiene and self-respect like that.

We are not immortal, despite all the advances in medicine and technology

I reflected on why well-informed members of my family, some of whom have a healthcare background, did not wish to discuss a DNAR order. I realised how much work needs to be done to recalibrate society’s expectations about resuscitation, and we have made little progress within this Covid world. There remains a perception that a DNAR means depriving someone of treatment, rather than the reality of allowing a natural death.

Sadly, my mum has now significantly deteriorated. She can no longer safely climb the stairs and struggles to hold a conversation. She is being lovingly cared for by my brother and his wife, who are owed a debt of gratitude I will never be able to repay. She was recently visited by her wonderful GP, who triggered community nurse support and also broached end-of-life care honestly and sensitively.

So, last week I received a second email from my family, this time advising of mum’s DNAR status. I felt immediate relief, knowing that quality of life would be prioritised over quantity, but I knew this emotion would not be shared by all the family.

Like any major crisis, Covid brings some life lessons as well as hardship. A key learning point for us all is that we are not immortal, despite all the advances in medicine and technology. That, as a society, we need to start talking about and accepting death, just as we do birth and marriage.

As I write this in the middle of Dying Matters Awareness Week, I hope for the day when we can start having these conversations in classrooms, and funeral wish-lists become as much a part of our lives as wedding lists.

Dr Shaba Nabi is a GP trainer in Bristol. Read more of Dr Nabi’s blogs here

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Readers' comments (24)

  • Shaba, another thoughtful and well written blog.
    I don't think society is moving the way we would like. I haven't met a patient in the last year whose relatives/friends have died.
    They have all "passed"!
    Soon we won't even be able to say the word!

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  • That’s a particularly insightful and gentle commentary Shaba.

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  • A good article......

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  • National Hopeless Service

    There seems to be an acceptance that its OK to die from cancer but absolutely nothing else even amongst professionals. I have regularly found district nurses doing obs' on people clearly on EOL for heart failure etc and people discharge from hospital on statins etc dying of generally frailty of old age.

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  • I think that there is a big gap that needs to be filled by public health education.
    The brilliant book by Atul Gwande on death and dying should be compulsory to all medical students but also good to read and discuss in schools.

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  • I also think that there should be a default position of no resuscitation for this in nursing homes and anyone with diagnosed dementia.

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  • You die because you are born. The only truth on this planet. I agree. Medicine itself is expired - based on flawed concepts, flawed teachings and doctrines, ideology and lack of any preventative medicine and willingness to say nothings wrong with you and any patient understanding of basic human function, anatomy, physiology and healing processes. Instagram they know though, and how to complain. I'll be honest it's all a NHS charade and we're playing along with it, patting our backs for a mostly addictive and destructive health-seeking mindset where the system sets you up to fail. Because nature always wins, always.

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  • Great column. It's not a universal sentiment in people though, some people are pragmatic and realistic and understand the futility of medicalisation of the end of life, particularly HCPs! They just have less impact on us than the conflicted boomers whose sense of entitlement sometimes knows no bounds (for themselves and their nonogenarian parents). A caller recently complained (formally and with threats of litigation, which is a real ballache) that the GP was not flying in serum from CoVid survivors in the USA to prophylactically infuse into their aged relations. Is that even a thing?

    Personally Copernicus wants no PEG feeding. I'm much more fearful of being left in that twilight zone than anything else that a doctor might do to me. If I can't eat my dinner, let me go.

    My neighbours are hellbent on putting a defibrillator in our local red phonebox, which I would much prefer to be a library. In a village of 80 people, I think a defib would be used successfully about once in every 100 years. Copernicus (ever the scientist) has argued to put it in the pub, if they have to put it anywhere, as that's where all the arrests traditionally happen around here. His suggestion of a syringe of naloxone being much more useful was met with derision :) they don't believe in the County Lines around here, too posh.

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  • David Banner

    Copernicus makes a great point about baby boomers/BBs (and all of the generations that followed). Pre BB, there was an acceptance of the inevitability of death. Life expectancy was less, young men were routinely slaughtered in wars, humble bacteria frequently killed children, childbirth was positively dangerous, and people reaching their “3 score and 10” were grateful for a long life and ready to meet the their Maker.

    Well not any more. People seem to have a sense of immortality, “70 is the new 40”, and an unrealistic expectation of life-preserving treatment irrespective of the cost. Death is definitely taboo, because it won’t happen until I’m well past 100 and gone ga-ga.

    As Shaba suggests, one positive aspect of Covid has been a reckoning on the inevitability of death. The over 65s suddenly have to confront the possibility of a sudden demise, with no possibility of a (probably futile) ventilator.

    Will this realisation will remain post Covid? I doubt it. If you think the BBs are entitled and self obsessed, just wait until the Millenials hit 60! You ain’t seen nothing yet.

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  • All composite phenomena are impermanent- said the Budda apparently. The body is such a phenomenon, composed of mostly empty space according to quantum physics, and not separate from the rest of existence, and hence destined to decompose and recirculate. Consider the fact that your toe-nail clippings may once have been part of a dinosaur, and your thoughts, memories and emotions have even less substance than your toe-nails.

    In the grand scheme of things, this business of living is the exception, super-imposed on non-existence. If people really were conscious of this, including doctors, it would put this "noble vocation" of ours into a wholly different light. But hey, no need to think too hard, just take the wages and distract yourself even more with activities and possessions to obscure this unpalatable truth a little more.

    (Damn you, Schopenhauer!).

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