It's my life, not God's

In today's Observer, Catherine Bennett wrote about Debbie Purdy, an MS sufferer who'd like to be able to die at a time she chooses but will need help to do so. She doesn't want her husband to be prosecuted for helping her, which could happen, as the law stands.

Mrs Purdy isn't the first to have fought this battle. Diane Pretty is just one high profile case. She died in May 2002, having lost a legal challenge that would have allowed her husband Brian to help her commit suicide when she deteriorated. She had Motor Neurone Disease, which can result in asphyxia. Her husband is quoted as saying,

"They had trouble getting her comfortable and pain-free until Thursday evening, after which she started to slip into a coma-like state and eventually died.

"Diane had to go through the one thing she had foreseen and was afraid of - and there was nothing I could do to help."

Dignity in Dying (formerly known as the Vountary Euthanasia Society) reports,

• The 1996 British Social Attitudes Survey found that 82% of the public believe people suffering from painful, incurable diseases should have the right to ask their doctors for help to die. Every opinion poll since then has produced similar results.
• Support for medically assisted dying is just as high amongst religious people and disabled and elderly people. This is despite the fact that some organisations representing these groups have campaigned against the Assisted Dying for the Terminally Ill Bill.

As Bennett wrote, every time the issue is raised, men and women of faith proclaim the sanctity of life, tell us that God wouldn't like it, and raise the spectre of unscrupulous relatives and nasty nursing home staff killing off the elderly and disabled as they please. People can't be trusted to stick to the "voluntary" part of voluntary euthanasia, they say; it'll just be a convenient way to get rid of troublesome invalids. If they banned God from the debating chamber, they might make more sense.

Painless palliative care isn't all it's claimed to be, mainly by those in the hospice movement, which is dominated by the religious - all the hospices around here are named after saints. And even if it was, shouldn't we be able to say goodbye when we'd like to, rather than waste away without the control of our bodily functions? We nursed my dad at home when he was dying. He was riddled with cancer that had started in his stomach. No one mentioned death in our house, let alone euthanasia. He and my mum were not inclined to talk about it. He had a syringe driver attached to his arm, full of Morphine, so he could self-medicate when the pain got bad. When he was too ill to use it, he had to have frequent injections. The toxins flowing around his body from the drugs and his enlarged, diseased liver, made him delusional. He was twitchy and agitated. While he could still find the strength to get out of bed, he somehow managed to find his way downstairs and into the street, looking for someone to "take me home", while mum slept in the next room. After that, she was never left alone with him. When he no longer had the strength to get up, he lay in bed with his fingers clawing at the bedclothes, mumbling about the nightmares he was having. One day, I called the doctor to ask him to come and sedate Dad. While Mum and my sister were downstairs, the doctor stood with a syringe full of Valium and said, "You know what might happen if I give him all of this on top of the Morphine, don't you?" "Yes," I said, "go ahead." Dad's breathing grew more shallow and we thought that was it, but the stubborn old bugger didn't die for another fortnight. No, I didn't ask the doctor to kill him, but we both knew that he might die. If it has been me in that bed, in that state, I'd have wanted to die. Dad was locked in a nightmare, and couldn't wake up.

I've lost count of the number of times that I've had to take a sick animal to the vet for euthanasia. The most recent time was when Wizzy collapsed one Sunday at the end of July, and was clearly in distress. She was seventeen and probably had an undiagnosed tumour that caused a sudden bleed. By the time a syringe had been emptied into a vein, she was already on the way out. The body goes limp; the breathing stops; the heart slows and stops. That's what I want, if I'm in pain or severe distress and there's no hope of recovery. How dare anyone tell me that his or her God says it's wrong!

A serious case of denial

The remains of a baby boy that have been kept in a mortuary for 21 years will be buried on Friday without any relatives present after his family withdrew their consent for the funeral to go ahead.

Christopher Blum's parents have refused to bury their son, who died when he was four months old, because they dispute the cause of his death.

A pathologist named sudden infant death syndrome (Sids) as the cause, but Christopher's parents believe it was linked to a triple vaccination he received hours before his death.

Enfield council will bury the boy's remains in a north London cemetery whether his family are there or not.

21 years! That little bundle has been stuck at the back of a freezer all that time, because his father wouldn't accept the results of the post mortem examinations. After so long, the father's refusal to go ahead with the funeral seems more to do with his resentment towards Enfield council than with a realistic expectation of new forensic evidence. It's very sad, but that man needs to see a shrink.

Behind the scenes

Behind the mirror, originally uploaded by Sparrows' Friend.

I took this photo at a nearby crematorium. There's a one-way mirror at the back of the chapel. On the other side is the vestry, where the chapel attendant can hear and see what's going on, play the music system when required, and get ready to tidy up at the end of a ceremony. The mourners can't hear anything from the vestry. The platform is because the mirror is high up for the best view. You can see more of my death-related photos on Flickr.

On the Guardian website, there's a collection of photographs taken by Laura Peters behind the scenes at mortuaries, funeral parlours and crematoria for her exhibition, Behind the Last Closed Door.

You can see some of the sort of things she photographed at one of Ipswich Crematoria's open days. There's a 360° panorama of the business side of its chapels on the BBC Suffolk website.

Sticky carpet situations, and other messes

"Sticky carpet situations" was how a housing officer I used to know described some of the homes that she was required to visit. I knew exactly what she meant.

Sticky carpet situations are where your shoes make a sort of sucking noise as you walk in, as the soles peel off the carpet with each footstep. When invited to take a seat, you look around for an un-upholstered chair without any wet patches or obvious stains. I have recklessly sat on a settee, the only available place to sit (apart from a sticky carpet), and found that when I arose, my rear was damp, and it wasn't me.

In such homes, I usually decline a drink. "Tea?" "No thanks," I'll say, imagining the mug might have been cleaned, if at all, with a cloth and some spit. They remind me of a landlady I had, years ago, as an art student. I lived in a flat above their filthy kitchen, where her emaciated husband, who'd been a prisoner of the Japanese and suffered chronic digestive problems ever since, toyed with the food she served for his dinner, anticipating the frequent trips to the bathroom that would inevitably result. I suspected that her unhygienic cooking methods contributed more to his poor state of health than the Japanese ever had. But I digress.

I've found myself in situations where there's been livestock in the room, and I don't mean dogs and cats and a liberal itch of fleas. One house had a colony of guinea-pigs in a corner of the kitchen, whose squeals interrupted us. Another had a very smelly rabbit hutch, with a very sad-looking rabbit, in the corner.

In sticky carpet situations, the people have lived chaotically, so it's not surprising that the man or woman whose funeral they've been arranging have also lived that way. Some would be funny, if it wasn't so tragic. Imagine the lack of imagination of a family who accepted a top flat in a tower block from the council, knowing that one of them was a chronic depressive who'd attempted suicide several times. Guess how she died. Imagine the sheer stupidity of a man with a girlfriend and two small children who got very drunk, stole a car, crashed it on a busy slip road, and then wandered onto the road to be run over by two large lorries, one after the other. His girlfriend couldn't understand why the funeral director didn't want her to see the body. Imagine visiting a drug dealer whose front door was made of reinforced steel, and being invited to sit on the bed, the only place in the room that wasn't covered with junk. His girlfriend had committed suicide. I could see why she'd have wanted to. Imagine the family of a murder victim who lived in a tiny seaside chalet, where the victim's mother chain-smoked and the victim's small son played on a sticky carpet. The room was dominated by a huge TV and an enormous chip pan, balanced on the edge of a Baby Belling stove. How would that child grow up? Would he be a murderer, like his father? Imagine preparing the funeral for a teenage boy who'd deliberately string a wire between two posts so he could show off on his motorbike by ducking underneath it at speed, only to almost decapitate himself. He was always a laugh, they said. There are people who live dangerously from choice, such as mountaineers, and there are people who just self-destruct. Sometimes they wreck other people's lives too.

When chaotic lives end, I've sometimes got the impression that a fair proportion of the mourners (if there were many mourners) have turned up just to make sure that he or she really is dead and they don't have to deal with the spillage of chaos any more. Sticky carpets are the least of their worries.

"End of Life" care

It means dying with dignity. Today's Woman's Hour had a feature about this, a new Government initiative. Woman's Hour reports that "Over half a million adults die each year in England but the service available can often be patchy, and many people do not die where they would choose to." One contributor referred to people wishing to die at home, with familiar smells (like burnt toast), being slobbered on by the dog. Whatever the quality of your toaster, everyone should have a good death. If they're going to provide the training and resources to make this possible, the initiative's welcome.

To be late

Over the past few weeks I've been reading Alexander McCall Smith's No. 1 Ladies' Detective Agency series of books about the "traditionally-built" Precious Ramotswe in Botswana. Mma Ramotswe refers to her daddy, whose bequest of a herd of cattle allowed her to set up in business, as being "late", meaning dead. Throughout the books, various people are referred to as "late". Not as "the late Mr So-and-So", as British people say, but simply as "late". No one is ever dead or deceased.

There are many euphemisms for death. A favourite of the British is "s/he passed away". Where to? Over the River Styx? To heaven? Descriptions of the latter vary according to your religion, or lack of it. The origin of the saying is biblical, so it's not a phrase I use.

On one online forum, during a discussion of death euphemisms, someone wrote that the reason there are so many of them is that it's the thing that frightens most people, so they prefer not to refer to it directly; to call it by its proper name. Is it healthier to acknowledge death by avoiding euphemisms? Does it soften the trauma of loss to use one that suggests that death isn't the end, something that most people wish were true? When people only have to deal with a few deaths, as they lose members of their family and circle of friends, this convention of kiddology may work, up to a point. Those who deal with death more frequently, especially the nastiness of disease and injury, are more likely to develop a type of humour that others may regard as inappropriate, but they need to preserve their sanity with jokes - just as long as they know when and where it's OK to tell them.

O Death, where is the sting-a-ling-a-ling,
O Grave, thy victoree?
The bells of hell go ting-a-ling-a-ling
For you but not for me.

Anonymous - song from WW1.

Illustration from Wikimedia Commons - Dante and Beatrice gaze upon the highest Heaven; from Gustave Doré's illustrations to the Divine Comedy.

Cultural attitudes

Attitudes to death, dying and bereavement vary from community to community, country to country. Grief is the same wherever you are, though how it's displayed or perceived varies according to social or cultural conventions, or the lack of them. In Britain, some people make "grieving" a full-time occupation (Queen Victoria did this). It's all part of the victim culture that prevails in affluent Britain. Like "counselling" and post-traumatic stress disorder, this is an alien concept to the majority who live in countries where death and dying through disease, conflict and corruption are everyday occurrences.

Nathan's just written a blog entry about attitudes to death in Cambodia.

For those who don't know me, Nathan's my son.

Ash cash cowboys

The Times reports,

The Church of England is taking steps to ban “ash cash” payments to clergy for taking funerals at churches and crematoria.

Instead, the money will go direct to dioceses. The move will stamp out the “crematoria cowboys”, clergy who supplement meagre or non-existent incomes by conducting dozens of crematorium funerals at £96 a time.

At its meeting next month in Westminster, the General Synod will debate switching the “incumbent’s fee” for pastoral services to a fee payable direct to the diocesan board of finance.

Later in the same report, it says,

Every person in England is legally entitled to a wedding and funeral in the parish in which they live.

I didn't know that. Did you? Not that I'd want to exercise that right.

Anyhow, to get back to these "crematoria cowboys": I did wonder how many of these freelance clergy declare all their income, either to the church or the Inland Revenue. A significant proportion don't, it appears. What the clients might ask is; do they get value for money, wherever it ends up?

Heat exchangers at the crematorium

Considering the environmental cost of cremation - despite the Clean Air Act, it still causes pollution and uses fossil fuels - don't you think it's a good idea to reduce the impact by using some of the heat it generates to warm the living? Crematoria can be chilly.

The Daily Mail reported today,

Tameside Council in Greater Manchester is planning to link heat exchangers at Dukinfield Crematorium with its boiler system and hopes to use it to generate electricity through turbines.

Comments about the story are as interesting as the proposal. Most seem to be in favour, with only a minority using words like "sick". Eileen from Herts wrote,

Ughh. Sounds awful to me. I would hate to know the heating was being generated by loved ones [sic] bodies. Deceased or not.

Deceased or not? What does she mean?

The Daily Mail's sub-editor seems ignorant of the purpose of a crematorium. The story's headed,

Crematorium to keep mourners warm by burning bodies of loved ones

which suggests a funeral pyre with relatives standing around, warming their hands. Crematoria don't burn bodies to keep mourners warm, but because it's cheaper than burial and most people prefer it. There was a time when the idea was repellent to most people. It was a practical solution to the problem of overcrowded municipal cemeteries. Lots of people used to think "Ugh!" Some associated cremation with the fires of hell. It only takes a few decades for attitudes to change. Why waste heat?