Why "How to die?" - my question

I see I'm quoted in the Daily Mail today. Quite fairly I'm glad to say, although I don't think of myself as a "campaigner". Just someone with an insidious and very slow type of MND who is quite concerned about how little coverage good and natural dying receives in the media - of whom the BBC is just one example. And it matters because the media does a lot to shape public opinion, including in the area of suicide - which is of course the subject of tonight's BBC documentary, "How to die - Simon's choice". I shan't be watching tonight - but I might catch up tomorrow. Maybe the Mail's article tells me enough, including that Simon Binner's widow, Debbie, would have preferred him not to have gone to Switzerland. "I would have preferred him not to go,’ she admits. ‘There is a beauty in caring for someone who is dying. I loved Simon. I would have loved to nurse and cherish him to the end." What an amazing woman! 

In 2000 the World Health Organisation issued guidelines about the way the media should treat the matter of suicide. Near the beginning, there's a section headed: "IMPACT OF MEDIA REPORTING ON SUICIDE

"One of the earliest known associations between the media and suicide arose from Goethe’s novel Die Leiden des jungen Werther (The Sorrows of Young Werther), published in 1774. In that work the hero shoots himself after an ill-fated love, and shortly after its publication there were many reports of young men using the same method to commit suicide. This resulted in a ban of the book in several places (1). Hence the term “Werther effect”, used in the technical literature to designate imitation (or copycat) suicides.
"Other studies of the media’s role in suicide include a review going back to the last century in the United States (2). Another famous and recent case concerns the book Final Exit written by Derek Humphry: after the publication of this book, there was an increase in suicides in New York using the methods described (3). The publication of Suicide, mode d’emploi in France also led to an increase in the number of suicides (4). According to Philips and colleagues (5), the degree of publicity given to a suicide story is directly correlated with the number of subsequent suicides. Cases of suicide involving celebrities have had a particularly strong impact (6).
"Television also influences suicidal behaviour. Philips (7) showed an increase in suicide up to 10 days after television news reports of cases of suicide. As in the printed media, highly publicized stories that appear in multiple programmes on multiple channels seem to carry the greatest impact - all the more so if they involve celebrities. However, there are conflicting reports about the impact of fictional programmes: some show no effect, while others cause an increase in suicidal behaviour (8).
"The association between stage plays or music and suicidal behaviour has been poorly investigated and remains mainly anecdotal....
"Nevertheless, there is always the possibility that publicity about suicide might make the idea of suicide seem “normal”. Repeated and continual coverage of suicide tends to induce and promote suicidal preoccupations, particularly among adolescents and young adults."

The normalisation of suicide as a remedy for chronic and terminal illness, or disability, is the reason last November I wrote to Lord Hall, the BBC's Director General. Here's my letter, followed by the delayed reply from one of his underlings.

26^th November 2015

Dear Lord Hall

I am writing to you on a matter of personal concern to me as I have a chronic and life-limiting disease.

You were quoted two days ago as saying that the next charter should not be an attempt to tell the BBC what programmes it could or could not make.  Whilst I agree with that aim completely in principle, it is most important that the Corporation also maintains its commitment to editorial impartiality in all its output, especially in news.  To that end it needs to be accountable, ultimately to those who pay for it through their representatives.

My particular concern is to do with the Corporation’s treatment of end-of-life issues.  Although generally your news outlets make an effort to represent opposing views when the subject is debated, there seems to me a consistent disposition to focus nationally on stories of people ending their own lives (travelling to Dignitas etc) rather than on the many more who choose a natural death and the work of hospices, palliative care doctors and nurses.  I do of course realise that news consists of the exceptional.  Nevertheless, the media both reflect public opinion and mould public perception.

My wife woke up recently to hear an account of a ‘beautiful’ death at Dignitas.  A few weeks before, Victoria Derbyshire did a feature on a man who had announced his imminent death there.  I was in touch with the planning producer at the time who wrote to me.  ‘I will certainly talk to my editor about your suggestion of covering good end of life care on our programme – as I think that would definitely be a very interesting and important issue to cover.’   I have only praise for that producer who was more than helpful.

What concerns me is that inevitably in an organisation as large as the BBC there is a danger of an editorial orthodoxy which ironically discourages diversity of viewpoint in its creative output.  There are many inspiring stories of surviving against the odds and of good natural dying out there, which are newsworthy, and yet we see and hear precious few of them, it seems to me.

The media affect the mood and culture of our society.  To focus on stories of death can induce an atmosphere of fear and hopelessness in the audience.  Whatever is in the next charter, I hope it will keep in place some sort of independent oversight in order to ensure negative and positive are balanced in your output. 

Yours sincerely

Michael Wenham

Lord Hall of Birkenhead

Director-General

BBC

London W1A 1AA

cc         Rona Fairhead, BBC Trust

            Ed Vaizey MP

            The Rt Hon John Whittingdale

As the BBC might themselves put it, Lord Hall declined to reply but the corporation did issue a statement. A bland and predictable response, sadly. It remains to be seen whether we see any more positive programmes to encourage those of us with incurable disabling conditions that there is an alternative to topping ourselves.  

Thankfully, looking back

Well, it’s been quite a year, in my book.  Internationally, it’s been a bit of a mess, with seemingly endless blood-letting and just some hopeful glimmers such as the breakthrough in the Iranian nuclear talks.  Nationally, it’s hard to know what to think, with, apparently, economic recovery on its way (hurray!) and yet, clearly, standards of living still falling and food-banks multiplying.  So leaving things too complicated for me aside, let me reflect on my own past twelve months.

Early in the year, the two big ecclesiastical appointments caused me to suspect that the Almighty hadn’t nodded off.  He’s the one to break the mould – and in Justin Welby first and then in Jorge Mario Bergoglio the world was suddenly faced with an Archbishop and a Pope of very different characters from any of their predecessors right back to the first century.  Justin Welby today concurred with Time magazine’s identification of Pope Francis as Man of the Year.  I must say for me they are both outstanding examples of Christian leadership, men with the moral mettle to practise what they preach.  Francis “almost persuades me” to be a Catholic - good thing Justin's there too! 

I’ve been kept quite busy talking about ending life well, a number of times at St Mellitus’ College in West London and a couple of times on TV.  The former I especially enjoyed.  I suppose it was partly the erstwhile teacher in me; and it was partly having a sympathetic audience prepared to take the trouble to understand my gob-stoppered speech.  It’s something, as you know, that I feel strongly about, and which I think is under threat in the very country where the hospice movement began.  As Dame Cicely Saunders, its pioneer, once said, “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”  That should be the motto of all geriatric and terminal care. 

Well, certainly, helped by Jane and family and friends, this year I have continued to live – and to live a fulfilled life.  I have had moments of desperate frustration, part and parcel, as a friend of mine recently put it, of  “The joy and depths of this terrible, painful and yet wonderful journey of loss, disability and dependence - the gift that has been given to us.”  Yet I have had times of great joy, such as the week’s holiday with all our family in the middle of Devon in the sunniest August for years; getting down and into the sea perched on a bulbous bouncing beach wheelchair; getting to know our daughter’s rapidly growing special needs’ therapy puppy, and getting to know new friends.

Two particularly special friends we made this year are Esther and her partner, Julie.  It’s not often that a chance encounter completely changes one - I'd call it a "God-moment".  But hearing Esther explaining vividly the prolonged pain and exclusion she’d endured among Christians because of her sexual orientation was the final confirmation for me that I and many like me had long been responsible for a gross injustice in the very community which should be marked by justice and love.  Followers of this blog will perhaps remember that I have long admired faithfulness in same-sex friendships.  However now I believe something more, and that is that sexual orientation is not a lifestyle choice, but an innate given, or gift.  How can we withhold love and welcome from our sisters and brothers?  I think we should bless them.  It will for many seem an unremarkable conclusion.  Equally for many it will seem heresy.  There it is.  It seems I keep on learning - slowly. 

I’ve not been able adequately to express the power of that meeting and my present conviction.  The best I can do is recommend my book of the year, given me at Christmas: Unconditional by Justin Lee (subtitled “Rescuing the Gospel from the Gays-vs-Christians Debate” published this year by Hodder & Stoughton, also published as Torn in the US).  If you don’t understand the hurt gays endure in the Church, this will give you some idea.

My DVD of the year has to be Les Misérables, that remarkable achievement of performance, cinematography and, of course, of story-telling.  I forbad myself seeing it in a cinema suspecting I would weep uncontrollably and loudly, and so waited for the DVD to come out.  I didn’t weep uncontrollably, although I confess Anne Hathaway’s extraordinary "I dreamed a dream" did reduce me to tears.  However it’s the film’s unbearably potent message of forgiveness and love that most moved me and conjures the dream of how radically revolutionary a society based on it would be.  It would be the Kingdom of heaven.

My woman of the year, apart from members of my family, is, I think, Jack Monroe, a deservedly popular blogger, A girl called Jack looks back, who in her own words “started this year living – existing – on a £10 a week food budget topped up with five items of food from the Storehouse food bank once a week. (And) ended it with a recipe book deal, baking biscuits on Woman’s Hour, with a Guardian column, a debate in the House of Commons and regular political and campaign pieces in the Daily Mirror.”  She came across my radar when she was campaigning for the poor and petitioning for a parliamentary debate about the rise in food banks.  I just like her.

My man of the year, apart from members of my family again, is – sorry to be predictable – Pope Francis.  Here’s quite a good summary of why (not mine): Why Pope Francis is person of the year.  I’m sure there are thousands of less high-profile people who are equally acting out the good news of Jesus Christ, but it is quite something to be in a position of such power and temptation and to maintain one’s integrity and humility.  No doubt he has made and will make mistakes.  After all he is human.

Talking of the all too human, my sporting flop of the year has to be the England men's cricket tour of Australia this winter. What a craven capitulation!  The less said the better.  And is the sporting triumph the second consecutive “British” win of the Tour de France by Chris Froome, or the “British” Men’s Singles victory at Wimbledon for Andy Murray?  I guess I'd go for the Scotsman.

My outing of the year - well, I'll choose our two to Stratford on Avon, first to see As You Like It, with Pippa Nixon outstanding as Rosalind, to celebrate our wedding anniversary, and secondly to see Nancy Meckler's brilliant production of All's Well that Ends Well in company with our delightful out-laws.

So another year ends.  And I’m looking forward to my favourite morning.  Tomorrow, I hope to wake up beside my lovely wife and realise that I’ve been spared to enjoy yet another year of discovery, starting with the Vienna New Year's Day concert, coffee and croissants..., and then who knows what surprises and new or renewed friendships?  Lord, bring it on! 

The dissenting voice

Tucked away in the BBC's website report of today's campaigning report of assisted dying was a sentence which caught my eye. "However, one of the 11 commissioners, Reverend Canon Dr James Woodward, disagreed with the conclusion." I'd corresponded with him last year after my somewhat intemperate refusal to give evidence to the "commission", and apologised for tarring all the commission with the brush of prejudice at the outset. I've made no secret of my feelings about the whole exercise, but I have to say that Dr Woodward's statement in Appendix 3 of the lengthy report repays reading and for me is its redeeming conclusion. It can't have been easy to differ from the majority vote. 

He seems to me to have identified important issues, in particular breaking our society's taboo of discussion of death and dying, and having a broader debate about the kind of society we want to live in before thinking of changing any so fundamental law.

"As set out in the executive summary to this report, I do not feel able to put my name and support to the more specific recommendations that are made in chapters 11 and 12 of this report concerning the majority decision of the Commission that the present law could be changed to allow assisted dying in restricted circumstances. I support the coherence, rigour and quality of this work and hope that it will be read and used as a basis for further research, work and public debate. I regret that some have felt unable to contribute to the process of discussion, engagement and listening that has characterised the process. I wish to continue to work with my fellow Commission members to promote a deeper and wiser dialogue that moves away from polarised and entrenched positions on assisted dying that are incapable of listening to a wide range of issues and experience.

"In our work it has become clear that there are significant difficulties with the present law. My visit to Switzerland to learn something of the law and practice there raised many more questions about the way a culture views and values life, death and the freedom to choose. However this complex and contested area of human life cannot be dealt with through the law or medicine alone. We need to engage further with the social and ethical reflections on experiences of death and dying. The ethical debate is not over and it is the responsibility of all ‘sides’ of the debate to listen more carefully to the questions and concerns of one another.

"Further there are important theological questions about suffering, personhood and the value of the vulnerable that need to inform a more open conversation about death and dying in Britain today. I am particularly concerned about the adequacy of UK health and social care where dignity and compassion are values that are universally affirmed but often not part of the day to day practice of those who are tasked to care.

"In conclusion I believe that a broader societal debate is required before any attempt is made to move to a change in the law on assisted dying. As a society we need to bring all our collective wisdom to bear on these questions in an open and honest fashion. I understand that my particular view is a minority one and I both respect and admire my fellow Commissioners in their views and recommendations. I hope that the report will be read carefully — it is an important contribution to the debate."

I have written to thank him, and I very much hope his thoughtful voice will be listened to. Meanwhile, in response to my last post, Sally, a doctor friend of ours, could have begun part of the discussion with this powerful message: "Years ago, while working in a hospice, I admitted a patient who was in agony having had totally inadequate analgesia in a prior hospital. His wife was screaming at me to end his life, and he was rolling around in agony, but within in a short time he was sound asleep with good analgesia. He slept for about three days having been completely exhausted by being left in severe pain. He eventually woke up and subsequently had a good death. 

There is such a thing as a good death, but death is remote and almost taboo in contemporary society. We should not abdicate responsibility for striving for excellence in palliative and terminal care. We should not turn doctors into executioners. This is not a religious discussion. Civilised secular society has a role in addressing the concept of a good death which has no need whatsoever to involve killing."

Good morning!

When Jane pulled back the curtains this morning, I looked out on a clear blue sky and the houses over the road lit up by sunshine.

When I turned on the radio, there was an item about the report on end of life care provision by the CEO of Marie Curie Cancer Care, Thomas Hughes-Hallett. He was talking about it at 7.10, and then, an hour later, there was a discussion about it with Care Services Minister, Paul Burstow, and the palliative care consultant at St Thomas' and Guy's hospitals, Rob George, introduced by a clip of Tony Bonser, describing his son, Neil's death at his home, "He died peacefully, where he wanted to be" - thanks to a Macmillan nurse's intervention, asking the right question at the right time. It was a brilliant example of how dying can be managed well - so different from the many scare stories that are peddled too often. You can hear it half way down this article. The report seems to be saying that more widely available palliative care at home and in hospices would actually save on hospital budgets and therefore not cost the NHS more. Refreshingly, the minister welcomed the government-commissioned report without reservation; unsurprisingly he wouldn't be acting on it straightaway - examining implications, pilot projects etc. But it was good to hear something really positive about end of life care.

Perhaps the most encouraging point in the Today programme was the very end when John Humphrys said: "Just before we close, we've had a huge response to our item on palliative care, the care of people who are dying... very warm praise from an awful lot of listeners for Tony Bonser who spoke so passionately and with such dignity about the death of his own son, who was terrified of hospitals and did eventually, in fact, die at home. One email in particular caught our attention, Marian Nash whose father died just on Sunday. She arrived at the care home just as they were calling the ambulance, even though he would not have wanted to go to the hospital, and in the end she says, 'she fought her corner' and he died at home. She says he had a beautiful death surrounded by two of his children and with his favourite music playing in the background. 'I dread to think what his end would have been in hospital.' And that's what so many people have been saying. And every single email we've had,... from people who've had experience of hospices , says how wonderful they have been and how great care workers have been at home." Maybe the BBC is learning to give the silent majority its voice - or maybe the silent majority is finding its voice.

That wasn't all. The Chief Rabbi, Jonathan Sacks, a good argument for Judaism, was giving Thought for the Day. He was reflecting on the prevailing mood of pessimism and on actually how blessed we are. We may be preoccupied with cut-backs and pensions, but in a global and historical perspective (he mentioned his parents and grandparents who, I guess, were in mid 20th century Europe) "The lot has fallen to me in a pleasant place," he quoted from the Psalms, "I have a goodly heritage." Amen, that's true.

A couple of hours later I was reminded of the Burmese pro-democracy leader, Aung San Suu Kyi, who gave the first of this year's Reith lectures on Tuesday morning. What a brave woman! 21 years under house arrest, refusing to leave Burma for fear of not being let back in - even at the cost of seeing her two sons and not being able to see her dying husband. We take so much for granted, and we gripe about such insignificant things. 

A positive gift from the past

I got quite emotional this morning when I heard the beautiful voice of my late cousin on BBC Radio 4. It was on Sunday Worship with the theme of The Healing of Fear. Michael Ford played part of an interview he made last September with Grace Sheppard, as she faced her death from cancer. She talked about the power of gratitude, developing a habit of thankfulness for all the little things, pictures, flowers, a drink, which mount up. "To me, they're a gift from God... and it helps you do the hard bits."

from Chester Diocesan News

She spent her last days in St John's Hospice, hovering between two worlds. "Despite difficulties with her breathing,  Grace told Jenny (her daughter) that dying was nothing to be afraid of. In fact, she felt distinct excitement, and could discern something wonderful about what was going to happen. In the consoling atmosphere of the hospice, Jenny felt that dying was no more fearful than being born."

You can hear Grace on Radio 4, Sunday Worship, 20 Feb, at 27 minutes in.