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Why don’t we look death in the face?

Volume 33, Number 3, September 2022

Death is part of our stock in trade: wars, famine, fatal accidents, murder, obituaries – and never more so in the last 70 years than now. Covid-19
brought death to our TV screens every night – and then there was Ukraine. But although the media are accomplished in reporting death, we are not so
good at discussing how to deal with it.

We are not alone. Medicine’s relationship with death is far closer than ours and yet doctors are also reluctant to talk about it. In fairness, they are
far more open than they used to be in talking about terminal cancer. The silence of doctors results in futile suffering and costs billions of pounds a
year, according to the The Lancet Commission on The Value of Death: bringing death back to life.

Surely, this merits extensive journalistic scrutiny? It is far easier to track NHS expenditure than, say, the obscene extravagance of Russian oligarchs,
especially when they allegedly use Britain’s courts as tools of intimidation to silence public-interest reporting. But although we report the euthanasia
and assisted dying debate, there is so much about death that journalism tries to sidestep.

Take my experience. Although it is not up there with losing your virginity, your first death knock is a journalistic rite of passage. The deceased
in my case was an 18-year-old motorcyclist. Vowing to get in and out of the house as quickly as possible, I hovered nervously on the doorstep, hoping the
family was out. I actually spent more than two hours talking to the boy’s mother, not only about her loss, but about me – it was what she wanted.

I wasn’t much older than he had been. Initially embarrassed and wanting to shy away, I was soon listening to her as I had never listened to anyone else.
I like to think that this helped me become a good listener. Talking to a stranger, I learned, can be extremely comforting for a bereaved parent. The
mother sensed that friends and neighbours wanted to avoid her. I felt bad about having felt the same way.

I had not been briefed beyond being told to retreat quietly if I was rebuffed, and not to look askance if I was invited to see the body. In
retrospect, it seems odd that no one in the newsroom asked how I had got on, especially after so long out of the office. But this is consistent with the
culture that lives on today.

Fast forward 15 years: I am now the Daily Mail medical correspondent. Over a boozy lunch, a leading doctor says that medically assisted euthanasia
is commonplace. Paul Dacre, then news editor, is very excited. I head the evening news list. But the editor, Sir David English, decrees that this is
something best left to the discretion of doctors. He doesn’t want to stir things up. This is a different kind of shying away from death – but it is just
that: shying away. An open debate then might have forestalled the futile suffering and waste of money that was to come.

Fast forward another 15 years: I am now teaching medical journalism to medical students at the University of Westminster (they take a year out of
medical school to complete the course). Reading the Lancet Commission report, I realised that the curriculum did not include the reporting of death.
This was an appalling omission.

It points to a kind of “death illiteracy” affecting critical decisions. The Lancet Commission report says: “Treatment in the last months of life is
costly and a cause of families falling into poverty in countries without universal health coverage. In high income countries, between eight per cent
and 11.2 per cent of annual health expenditure for the entire population is spent on the less than one per cent who die that year (in 2021, NHS funding
totalled £176 billion).

The commission explains: “Some of this high expenditure is justified, but there is evidence that patients and health professionals hope for better
outcomes than are likely, meaning that treatment intended to be curative carries on far too long. Conversations about death and dying can be difficult.
Doctors, patients or family members may find it easier to avoid them altogether and continue treatment, leading to inappropriate [expensive]
treatment at the end of life.”

Moreover, the commission says, the very bodies that should be taking a lead downplay the issue. “We examined reports on healthy ageing from the
World Health Organization, the US Institute of Medicine and the UK All Party Parliamentary Group for Longevity and they either make no mention
of death and dying or mention it in a single sentence or two. It is as if dying is not part of healthy ageing… which, of course, it should be [my italics].

“The UK NHS Ten Year Plan for England includes end of life care in only part of a single paragraph in a report of more than 120 pages, despite the fact
that death will increase by more than 10 per cent in the next 10 years.”

This reflects, I believe, a critical failure by both medicine and the media.

Where has medicine gone wrong? Atul Gawande, Harvard professor, surgeon and one of the outstanding medical writers of his generation, points
to medical school training. In his highly acclaimed book Being Mortal, he explains: “Our textbooks had almost nothing on ageing or frailty or dying.
How the process unfolds, how people experience the end of their lives and how it affects those around them seemed besides the point… The purpose of
medical schooling was to save lives, not how to tend to their demise.”

A cheerful medical story to balance things up

It was almost as if death, despite its inevitability, was a therapeutic failure.

Where have the media, specifically medical journalism, gone wrong? What we report is determined by news values, such as novelty, universality
and topicality. As I have said before in the BJR, medical journalism has been living through a golden age. There have been more advances in scientific medicine in the last 70 years than in the Hippocratic era more than 2,000 years earlier – everything from clot busters to in vitro fertilisation, and from
keyhole surgery to organ transplants.

We react to events and developments, which is why medicine has produced a disproportionate number of good news stories. Without having any evidence to back this up, I believe that editors sometimes see medicine as a means of putting a more cheerful gloss on days when the news is full of gloom and doom. There were days when I was asked to generate “something cheerful to
balance things up”. Even Covid has given rise to optimism, albeit misplaced, according to the Lancet Commission. It fears that the great success of Covid
vaccines “has perhaps fuelled the fantasy that science can defeat death”.

There is another problem. Our news value-based system does not encourage us to be proactive. Thus, since doctors and bodies such as the World Health Organization play down the impact of death and ignore futile suffering, so do we. We have been led by medicine. We should have been, and
should be, more challenging, but would this mean stepping out of the constraints of our news-value culture? Perhaps this may be a step too far.
But what would it achieve? What do we want? Gawande suggests that our ultimate goal should be not a good death, “but a good life – all the way
to the very end”, without futile suffering costing billions of pounds/dollars. This means accepting the limitations of medical technology – something that would alarm many people.

But I am a medical journalist and I must end with a good news story. The death knock is alive and well – despite the ready supply of emotive
quotes, personal details and pictures available from social networking sites (SNS). So says a study by two former journalists, Dr Sallyanne Duncan, of
the University of Strathclyde, and Jackie Newton, of Liverpool John Moores University.

Writing in The Phone Hacking Scandal: Journalism on Trial, edited by Richard Lance Keeble and John Mair, Duncan and Newton describe how
they conducted 49 interviews with regional reporters and six with editors or senior journalists about using SNS in death knock stories. They also
conducted 24 interviews with bereaved groups and families. Their comments were said to be illuminating and went a long way “to dispelling the myth
that all journalists are uncaring, unprincipled hacks and that all bereaved families want to be left alone”.

The study also concluded that having a journalist turn up in person and deal honestly and sympathetically with the story is preferable to the SNS
alternative, which tends to alienate the families from the account of the death. The authors said: “The death knock remains an important journalistic
activity in the digital age. Reporters from our study believe it is a key part of the news process.” This is indeed good news. Who would have thought
that the death knock would ever bring it?

JOHN ILLMAN

John Illman has edited GP magazine and been medical correspondent of the Daily Mail and The Observer and health editor of The Guardian. He teaches communications skills to healthcare professionals.
@john_illman

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