The Death Taboo

June 21st, 2012

The Death Taboo – How to achieve a good death | Sept 2011 – Talk to SW London Humanists | Rosemary Taylorson and Sara Wilcox

Rosemary Taylorson is a Humanist Celebrant conducting non-religious funerals, and Sara Wilcox works in dementia and the law and has worked with the British Geriatric Society. She talks below about their research, as well as brief outlines of the legal position as regards assisted suicide, advance decisions and end of life care.

Introduction

Our talk this evening explores the notion that in our culture at this moment in time, there is a taboo about death. The ‘D Word’ as this author calls it. (Brayne). We’ll look at some impacts of this avoidance, we’ll look at what a ‘good death’ could be, and look at some of the ways to achieve that for yourself and for those left behind. Although Sara will touch on it, this talk will not focus on the work of Dignity in Dying and assisted suicide – we have had someone from Dignity talk to us in the past and might do again as it deserves a meeting on its own.

Our focus is not on unusual deaths, but ordinary deaths – the fact of our own death – and whether we do or do not feel comfortable talking about the subject.

I don’t set myself up as an expert in this area – I have had an interest in the grieving process for a few decades, and nowadays, on an almost daily basis as a humanist celebrant I am in contact with bereaved people and occasionally those who want to talk about their funeral. But what I want to do here is start a conversation. I have taken some of my information from this book (Brayne) and from the Dying Matters website and a newspaper article.

The taboo

So what is the taboo about? You might all tell me that you are very easy talking about death and dying – your own and those you know. Indeed the fact that you are here tonight at a humanist meeting on this subject means you are probably more likely to have thought about and explored the issue.

But it seems to be the case that now, in our society we don’t easily talk about death. We tend to live as though it won’t happen, even though it is a fact that is there all the time for all of us. In earlier times, and currently in different parts of the world, this was not the case. In Europe in earlier times death and dying took place in a different context. People knew how to recognise the approach of death, how to talk about it and how to support those who were dying, and what to do. Today it’s very different. Most of us will die in hospital. The medicalization of death provides structure and language, but it does little to help us face the emotional challenge of dealing with the actual dying experience, whether our own or someone else’s.  (Brayne)

Modern medicine is so good at keeping us alive that it is often a shock when someone dies. But as recently as the early 20th century, average life expectancy in Western Europe was 30-40. Over 50% of deaths occurred under the age of 45. At the beginning of the 20th century, child mortality was high, huge numbers died in the First World War, and in the 1918 flu pandemic, 250,000 people were killed in Britain alone. (Brayne)

Death was something that happened as part of everyday life. Although distressing, it was regarded as normal. Family and the community dealt with it because they knew what to do. There was a protocol around death and dying, people recognised the signs of death, knew how to lay a body out, kept the body at home for people and children to view. (Brayne)

The family of one elderly man whose funeral I did said he was always proud of the fact that he had lived so long. He was born at home, with a neighbour helping his mother, and he arrived small and poorly. They all looked at him, and the neighbour said, ‘That one won’t last’. So his mother wrapped him up without trying to feed him, put him in a shoebox beside the fire for the night expecting him to be gone in the morning. To their surprise he wasn’t, and he lived to his late 90s.

After the 2nd WW there were significant medical advances in science and medicine. The sick and injured turned more and more to doctors to save their lives and death was increasingly taken out of the home and put into hospitals and care homes. Medication could prolong life and make the experience of death less painful. (Brayne)

Life expectancy here has doubled in a century. For those born in 2009, in Western Europe, life expectancy is in the high 70s for men and low 80s for women, and infant mortality has fallen to around 1%.

With the focus on life, denial and ignorance about death has increased. Euphemisms mask awkwardness – we avoid saying the words ‘dying’, ‘died’ or ‘death’, and instead say ‘gone’, ‘passed away’, ‘slipped away peacefully’.

Medical language is used to try and make sense of what is happening – those who are ill, their relatives and medical staff speak in terms of diagnosis of symptoms and accounts of treatments, sounding quite expert with the medical jargon. Doctors report that it is difficult to talk openly about death – patients come to them with hope of recovery, or a cure, or of managing the situation. If the doctor says the D-word it can be equated with hopelessness. (Brayne)

We have lost the protocol. These days’ people don’t know what to do, or what is expected of them. We are often away from support networks and our family, as we move around more. We don’t easily have the conversations so both the dying and their families avoid the subject.

Death remains a taboo subject in Britain, according to new research commissioned by the Dying Matters Coalition and carried out by Comres. (I’ll talk about this coalition in a moment) (Dying Matters)

Although the majority of people think that talking about death is less of a taboo than it was 20 years ago, two-thirds of all people agree that people in Britain are uncomfortable discussing dying and death.

The research found that while a third of people have discussed with their partner the type of funeral they want (33%) and  whether they have a will (33%), fewer have talked about where they would like to die (16%), or the type of care and support they would want at the end of their lives (18%). (Dying Matters)

Women are a lot more likely than men to have had discussions with their parents, but both men and women are more likely to have spoken with their partner than their parents – just one in four people have spoken to their parents about whether they have made a will, and only 11% have discussed with their parents where they would like to die.

81% of people have not written down any preferences around their own death, and only a quarter of men (25%) and just over one in three women (35%) across England have told anyone about the funeral arrangements they would like to have after they die.

56 -70% of people would prefer to die at home, yet of the 500,000 people who die each year in England, 58% die in hospitals.

Nearly two-thirds of people (60%) have not written a will – including a quarter (25%) of over-65s. (All above stats – Dying Matters)

Does it matter? What are the impacts of the taboo?

One impact is that without communication and understanding, death and terminal illness can be a lonely and stressful experience, both for the person who is dying and for their friends and family. Dying people and their families can experience a tremendous sense of isolation and can feel shut out of social circles and distanced from their communities. (Brayne)

No-one should be forced into being open – any taboo leads to discomfort and distress. But there can be an unhappy mismatch between people who feel differently. Denial around those who are elderly or who know they are dying can be distressing – they might want to talk about what they are feeling, they might want to say their goodbyes, settle unfinished business. They can appreciate life reviews – going through old letters and photographs albums can help validate what has happened during their lifetime.

And it works the other way – we may want to talk to our parents about their wishes, but they may close that door. Or we may want to talk to our children about our wishes and their denial can be distressing.

Another impact is control over the situation. Without openness and willingness to talk about death and dying, a lack of conversation can lead to people’s wishes being ignored or unfulfilled; if we don’t know how to communicate what we want, and those around us don’t know how to listen, it is almost impossible to express a clear choice.

Furthermore, as a society we don’t invest in death and dying. Only a small fraction of the NHS budget is spent on the dying. In 2007 the Healthcare Commission said that more than half of all complaints made against the NHS concerned end of life care. A 2008 study by Dignity in Dying found that of 31 Primary Care Trusts across London, spending on the dying was less than on half of one per cent of their total funding.

To address this, in July 2008, the government announced that it was ready to invest £286 million in a new End of Life Care strategy. In May 2009 this strategy, supported by the National Council for Palliative Care announced the formation of a new national coalition to support the implementation of this strategy, with a focus on raising public awareness and with an aim to support changing attitudes and behaviours in society in relation to death, dying and bereavement. The Dying Matters Coalition was formed and the BHA is a founding supporting member.  So far the funding has not been cut.

(All above – Brayne)

Leave if late – The impact of the taboo can be felt by the bereaved and those left behind

I experienced this myself. If there is a taboo about death, it is pronounced around death of children or babies. I lost two babies in pregnancy, one of which was a late and traumatic termination for abnormality. I experienced a great deal of avoidance – neither my family nor my friends knew what to say to me, and no hospital staff addressed my grief, the loss brushed under the carpet. I felt very isolated, and took a long time to recover emotionally.

Those of us here who are funeral celebrants experience families with positive approaches to their bereavement because the person died a ‘good death’ as they had wanted. On Friday last week, after we had enjoyed a funny and uplifting tribute, I read these words for a family at the funeral of a man of 81 who had decided against final cancer treatments:

Tony was only in hospital for one week, and even there he worked his charm. One nurse said to Mary, ‘I think I should tell you… I’m falling in love with your husband!’ Tony achieved a peaceful end – one where he made positive choices about the end of his life, calling the shots and remaining his belligerent self. Mary’s final request was, ‘May I kiss you?’ and he replied, ‘Most definitely.’ Then he said, ‘I’m going to sleep now’. Then he died peacefully with Mary and his children at his side.  

And last year, in contrast, I was distressed by an elderly woman’s anguish and self-blame as she agonised over her husband’s unhappy and painful death at home on a bank holiday weekend when she was left alone with him.

We witness families in the midst of tension as they disagree about what the person would have wanted for their funeral. And we see families and friends gain satisfaction and peace of mind from arranging a funeral where they are carrying out the expressed wishes of their loved one.

So how can we prepare? Sara will now talk to us about research done by the BGC and about advanced decisions and end of life wishes.

**

A good death, the art of dying

We can’t make other people start to talk about something they don’t want to, but we can take a look at our own attitudes. If we open ourselves to the fact of our own death and make some preparations we will begin to tackle the taboo in our own circles.

I’d like to read you a poem: Leave out if time short

Jaan Kaplinski, translated from the Estonian by Hildi Hawkins

Death does not come from the outside.

Death does not come from outside. Death is within.
Born-grows together with us.
Goes with us to nursery and school.
Learns with us to read and count.
Goes sledging with us, and to the pictures.
Seeks with us the meaning of life.
Marries, bears children, quarrels, makes up.
Separates, or perhaps not, with us.
Goes to work, goes to the doctor, goes camping,
to the convalescent home. Grows old,
sees children married, retired,
looks after grandchildren, grows ill, dies
with us. Let us not fear, then. Our death
will not outlive us.

If we are open about death and accept it as part of life, we can become aware that whatever happens next can be a meaningful part of our lives. Facing dying makes us responsible. My certain knowledge that it is going to happen and willingness to talk about it can give back some control.

We can also see this part of our lives as a rich time. Christina Patterson, who is a BHA supporter, wrote in the Independent this week about seeing Philip Gould on the Andrew Marr Show.

He has weeks to live and she was struck by the fact of seeing him at all at this late stage, and by what he was saying. I think it’s worth reading from this article.

He was, he told Andrew Marr, “in a death zone”, a place where “there was such an intensity” and “such a power”. This, he said, was “apparently normal”. And so, he said, even though he’d rather “not be in that position”, it was “the most extraordinary” time of his life. And certainly, he said, “the most important”.

Patterson wrote ‘You could see from the fire in his eyes that these weren’t empty words. You could also see that whatever he was feeling now was something that was bringing a certain amount of sadness, but also an electric joy. We don’t often see that electric joy, and we certainly don’t often see it on TV, because we don’t often get to hear from people who are down to their last few weeks.’ 

She goes on to write, ‘What he was saying was that death in itself is a kind of blessing. Not because of the annihilation, which none of us wants, but because of the brilliant, piercing joy it brings to life.’

She says,

‘We need to talk more about death. We need to be reminded of this miracle we wake up to every day, a miracle that’s only a miracle because it ends. When you get cancer – as I have done, twice – you can look at a traffic jam and think that you’ve never seen anything more beautiful. You can think that you’d do anything in the world to make sure you don’t leave it behind.

We need to be reminded, by the people around us all the time, of the real meaning of life. But I can tell you now: the meaning of life is life itself.’

And so to end, it has been said that what we fear most about dying is the associated loss of control. By empowering people to express their wishes, that control can be restored. We all need to plan dying well.

References:

Brayne, Sue, 2010: The D-Word: Talking about Dying, Continuum

Patricia C. Byron, 2010: Last Orders – The essential guide to your letter of wishes, Stellar Books

Dying Matters Coalition: http://www.dyingmatterscoalition.org

Christina Patterson: Lessons in living from a man on the brink of death, The Independent, Saturday, 24 September 2011