29 July 2021
‘Death Positive’
A state of mind.
By Lynda Goetz
I had not come across the expression until a few days ago when I read an article in The Guardian. There is, it seems, a movement in the UK for ‘death-positive’ libraries. Whilst this may at first hearing sound a little bizarre, it is a movement started in Redbridge that aims to make talking about death easier. There is no doubt that, in this country at least, death is not something readily talked about and is, as the head of cultural services at Redbridge points out, “… an even bigger taboo than sex”.
The idea of the death-positive libraries scheme, which started pre-pandemic, in 2018, is to use art, activities and literature to remove barriers to talking about the subject. In Redbridge a collection of books on the subject of death and dying are displayed under the heading ‘This is a death-positive library’; but that is only for starters. The library runs talks, film screenings and ‘death cafés’ where people can meet for discussion. Currently, there are only two other libraries in the country which have joined the initiative, Kirklees and Newcastle, but the plan is to roll it out nationwide.
At a time when the Covid-19 pandemic has forced many of us to come to terms with the death of loved ones in difficult circumstances (not just from the pandemic itself, but from the knock-on effects of lockdowns) this does seem like a good time to put our ‘relationship’ with death on a better footing. Essentially, we all know that we have to die, but as science and technology get better and better, we have in so many instances been enabled to put off that moment and, as the influence of religion wanes, the finality of death makes us more fearful and less able to contemplate it with any sort of equanimity.
A close friend recalled the unexpected and unwelcome phone call from the hospital a few days before her mother died. “I knew she was near the end” she remembers, “but no-one had ever prepared me for the fact that as her next of kin I might be expected to answer such a question.” The question she was referring to was, “Do you want us to resuscitate your mother if her heart stops?” Her instinct after the initial shock was to say “Well, of course”. But she then stopped to think and to ask herself what her mother would have wanted. She knew that her mother, whose husband had died some years previously and who had not been well for some time, no longer really wanted to go on living, even though she was ‘only’ in her late seventies. It was a tremendously hard call to be the one to shoulder the responsibility to answer that question, even though the final decision is the doctor’s.
Years ago that decision would not have been one anyone had to make. It would have been ‘in the hands of God’ – whichever god you placed your faith in. Now, it is within the power and duty of the medical profession to prolong life for as long as this is believed to be in the interests of the patient. Although relatives are consulted, the final decision is a medical one and it is made by the doctor. However, my friend would not have been alone in her unpreparedness for such a question. So many seem to think that humans should be kept alive at all costs. Is this really a rational belief and how is it that in the early part of the 21st Century any deviation from this view seems to be regarded as insensitive and callous?
Take for instance the ridiculous furore surrounding Health Minister Sajid Javid’s use of the word ‘cower’ in a tweet essentially expressing his gratitude for the vaccine programme and suggesting effectively that it was time to stop being so fearful. He was accused of ‘disrespecting’ those who had died and of essentially accusing them of being ‘cowardly for not fighting’ and also of insulting those who currently were doing their best to protect others. This is all over-sensitive and over-emotional. Presumably, it was this sort of response which Dominic Cummings was hoping to provoke when, in his interview last week, he accused the Prime Minister of having said that he did not want to tighten restrictions last autumn as ‘the people who are dying are essentially over 80… That is above life expectancy’. These alleged comments were widely taken up and reported by the media, but whether Dominic Cummings got the hoped for revulsion from the general public at such a remark is hard to know. (Many are hardly that enamoured of a man who is prepared to snitch on a former ally and employer). Suffice to say that in spite of the existence of such charities as Covid-19 Bereaved Families for Justice (the co-founder of which expressed the ‘deep hurt’ caused by Mr Javid’s remarks), the comments are a reflection of the facts.
Instead of blaming politicians or institutions, or even on occasion individual doctors for the death of loved ones, we need at this point in the history of humanity to learn to understand the difference between quality and quantity of life. Wonderful to live to 100 and beyond if you are in good health, but is it really the right thing to prolong the life of those who no longer have any appreciation or recognition of those around them or of the people they used to be? Is it right to attempt to resuscitate those whose heart or breathing would have stopped naturally, and brutally bring them back to a world they are in fact ready to leave? CPR (Cardiopulmonary resuscitation) is not a gentle procedure, nor is it as effective as we are lead to believe by its representation on television programmes. In fact it can result in broken ribs, punctured lungs and even brain damage (from time spent without oxygen getting to the brain). These can obviously cause additional harm and pain so that post CPR quality of life can be even worse than it had been previously. Is this really what we should expect to happen to frail elderly people?
As Atul Gawande concluded in his excellent book Being Mortal, we need to re-evaluate the way we deal with death and dying. The charity Dignity in Dying seeks to bring dignity and compassion to people’s last months and years and allow them more choice in how they are treated at the end of life. It is something which we all need to address and something to which we all need to give some thought – both for ourselves and for those we love and care about. Of course there are arguments about money and inheritance and there clearly need to be safeguards in place, but is it not time these debates were had? People need to be made aware not simply of things like the importance of making a will, but the value of putting in writing how they would like to be treated if they are not in a position to make these decisions for themselves when terminally ill.*
It does not seem glaringly obvious that a library would be the place to start discussions around death, but as death has largely been removed from public view (because it has become a medical rather than a social issue), perhaps books can be the initiators of an opening up of this unavoidable issue and enable our population as a whole to debate much more widely how we want to deal with this in the future. In an over-populated world should we just be discussing our attitudes to sex, how we do it and with whom and how few children we are prepared to have, or should we also be looking at the quality of our later lives and not mindlessly seeking to use science and technology to extend human life as far as we possibly can? ‘Death-positive’ may be a slightly odd-sounding expression, but perhaps it’s time has come.
* A Lasting Power of Attorney (LPA) Form for both financial decisions and for health and care decisions can be downloaded from the government website together with advice for completion. Both types do need to be registered – the total cost for which is currently £164
**Past articles on related topics: Life and Death, The Grim Reaper, Being Mortal, A 21st Century Death
Cover page image: Sandy Millar (Unsplash)
