Why am I still here?

When other helpers fail and comforts flee,
Help of the helpless, O abide with me.

First there was the cancer diary. Nigella Lawson’s husband John Diamond wrote one, you remember. Since the advent of the self-published blog countless people have died out loud.

Next, boomers started writing about the slow and distressing decline of their parents. You’ll find an example here.

Now those boomers are old enough to write about their own dissolution and are doing so to debunk the myth that too-long life is an unmitigated good thing. In last week’s Spectator magazine Stewart Dakers (77), reflecting that the reaper has changed from terminator to tormentor, dwelt on the horrors of longevity with both dread and splendid prose. Here are just a few extracts:

The existential reality of decline is aggravated by the prospect of total physical and cognitive disintegration, the details of which are well known to us, so we live in physical discomfort and mental terror. Old age has graduated into a form of pre-traumatic stress disorder.

We are a waste of space on a seriously overcrowded planet. We are in the way and those who are most impeded are the young. We can see this and are, of course, ashamed of ourselves.

My advice to young people is simple. Eat, drink, even smoke, and be generally merry, because that way you might be spared too many days of misery for yourself and your friends and family. Live short and prosper.

Old-age rational suicide will be with us any day now, just you see.

So it goes

Posted by Vale

Have you ever thought what it is to be a King or a Queen?

You are, usually, born to it: it is your life and your duty. Our own Queen clearly feels this keenly. As far as a commoner can tell, for her, the coronation oath confirmed what birth had bestowed: she became Queen for life, a vow as absolute as a nun’s.

Others, apparently, see it differently: Queen Beatrice and King Carlos have just unthroned themselves and nobody seemed to mind.

Who’s has the right of it? Our queen or the continentals?  Who cares? It’s strange now to remember that, once upon a time people fought and died over just this question. Did kings rule by divine right? Could you dispose of a bad one without sin or was it really the worst of crimes – worse than murder or treason, an affront to the very order of the universe?

Suicide used to carry a similar stigma. It was both self-murder – a broken commandment – and a direct affront to god. Our lives aren’t our own. Choosing to end them is to fling the gift of life back in god’s face.

In this week of debate about assisted dying, I do wonder how much its opponents arguments are rooted in these old beliefs. The feeling in our bones that suicide, however rational the argument, is still taboo.

Of course assisted dying is more complicated. It raises different, difficult questions. At its simplest, it’s about the way that others become implicated in a personal choice, blurring the line between suicide and murder.

But we need to work these issues through because attitudes are already changing – starting with suicide itself.

I need to be careful here. I am not praising or promoting suicide. If you are a celebrant or funeral director you know only too well what suicide means – the agony of families ruptured by the loss; the disbelief; the unanswerable questions; the terrible feelings of failure regret; the anger.

But there are occasions when it is not like that.

I took a service recently for someone who had lived a very full life. She was clever, accomplished and active.

She had known hardships and grief – her husband was dead and, many years before, her daughter had died. She had faced both losses with courage and great resource.

Without family now, she was connected to a wide network of good, loving, friends. She was involved, loved to to learn new things, enjoyed writing and painting.

Then Parkinsons was diagnosed and, as it progressed, she realised that her life was dwindling. It was becoming more about staying alive than about living so, well before she needed to, she made her arrangements and killed herself.

The service we planned was full of the thoughts and poems she had left us. The crematorium was filled to overflowing with all her friends. There was sadness and a deep sense of loss but there was respect too for her decision and her determination. We sympathised with her. I suspect that many of us were thinking about our own old age, wondering if we would be as brave as she had been.

Is helplessness and incapacity a universal fear these days? Is it feared now more than death itself?

There was no horror, though, or despair; just reflection and a determination to honour and celebrate our friend’s life. We wanted to do justice to her courage.

Too many things have changed now for lawmakers to avoid the hard questions. As we age we know what awaits us. We know that medicine now has powers to both save and destroy us.

People are already making their own choices, beginning to join that old stoic Seneca saying:

The ship that I sail in, I choose; the house that I live in, I choose; so will I choose the death by which I leave life.

We need to support people in their choice. We will need support ourselves when the choice comes to us.

Never say die

The Falconer Bill on assisted dying is making its way through the Lords before going on to the Commons, and the familiar debate rages once more. The usual suspects oppose it. They include senior doctors and lawyers and, you probably think, a lot of religious people, yes? And disabled people?

Actually, the stats show support for assisted dying as follows: 

  • * General population: 80%
  • * Religious people: anywhere between 60% and 80% depending on how you ask the question.
  • * Disabled people: 75% 

The principal players in the battle are, on one side, those who argue for personal autonomy and the right of anyone to die when they damn well please (terms and conditions apply), versus, on the other, those who seek to safeguard the interests of the vulnerable, whether elderly or disabled  — those who might come under pressure to do away with themselves. Should the Bill become law, there is the customary fear of slippery slopes and thin ends of wedges. It’s certainly true to say that the original Abortion Act never envisaged or intended that there should be so many abortions — but for all that, abortion rides high in the public’s favour.

The argument about assisted dying is one that needs to be heard; the law, when it comes, needs to be a good one. The eventual outcome is a forgone conclusion, of course. If it be not now, yet it will come. 

It’s perhaps regrettable that the Bill uses the euphemism ‘assisted dying’. What it means is assisted suicide – a doctor enables vetted people to kill themselves by handing them a fatal cocktail. One thing it is not is euthanasia, where it’s the doctor who does the killing. If the Bill becomes law, euthanasia will still be murder. 

Falconer’s Bill is pretty much a carbon copy of Oregon’s Death with Dignity Act of 2007. If you want to see how things are likely to pan out here in Britain, see how they have panned out over there

And if you want to find out precisely when you are going to die, click here. If you want to watch a US tv series showing people dying in real life, click here

The interesting thing about the debate about assisted dying is that it is taking place in the context of new science which is continuously calling for a reappraisal of the definition of death. At what point can we say that someone is dead? 

Take Ariel Sharon. Remember him? Prime minister of Israel. Had a huge stroke in 2006. Yes, that one. 

He’s still alive, lingering on in a permanent vegetative state (pic below). 

Once upon a time death was cardio-pulmonary death. Still is. But when technology made it possible sometimes to restore cardio-pulmonary function, but not consciousness, a redefinition was required. It’s called brain stem death. In nautical terms, the bridge has been wiped out, but the engine room is still humming. 

Brain stem death describes not loss of consciousness but the end of consciousness. Brain stem death is the point at which living organs can legally be harvested — and give a new lease of life to dying people. How dead is that? How dead are you when your heart literally goes, in the words of the song, on? A brain-dead pregnant mother nourished a foetus for 107 days and gave birth to a healthy child.

Which is why some people deny that brain stem death is death. 

Twenty years ago an MRI scan of a stroke patient might have shown them to be utterly dead.  Today, tissue plasminogen activator can restore them to unimpaired health. 

What price, then, the irreversibility of death? 

How would we define death in the as-yet hypothetical case of someone’s brain being transplanted from their dead — in a cardio-pulmonary sense — body into a de-brained but otherwise healthy body? 

Take it a stage further: if death is the cessation of life, what is life? 

Some people propose that death should be defined as the irreversible loss of personhood — the point at which you can declare that Elvis has left the building and ain’t coming back. Okay then, if so, when do you call time of death on a demented person? How do you address the matter of the still-beating heart? 

And yes, what constitutes “a person”? 

Over in America, Dr Sam Parnia is now reviving people who have died of a heart attack several hours after they have died, and he reckons that in 10-20 years’ time it’ll be possible to resurrect dead people after 24 hours. Parnia even proposes allowing a person who has died of, say, pneumonia, to remain dead while an antibiotic goes on working to kill the disease, and then, when they’re ‘well’ again, bringing them back to life. 

Understand this: brain death is nowhere near an event. It’s a process that takes longer than anyone thought. The brain goes on dying for hours after the heart has stopped beating. So: what levels of awareness do we retain after our death, and for how long? 

It’s science that’s altering the definition of death in the modern age. Many religions have, for centuries, thought of death, not as a full and final event, but as a time of transition. Science has not ruled out continuing consciousness. Sam Parnia, who has for years collected the recollections of the out-of-body experiences of those of his patients who have died for a short time, offers this caveat to those who think that the seat of selfhood is the brain:

“We always assume that all scientists believe the brain produces the mind, but in fact there are plenty who are not certain of that. Even prominent neuroscientists, such as Sir John Eccles, a Nobel prizewinner, believe that we are never going to understand mind through neuronal activity. All I can say is what I have observed from my work. It seems that when consciousness shuts down in death, psyche, or soul – by which I don’t mean ghosts, I mean your individual self – persists for a least those hours before you are resuscitated. From which we might justifiably begin to conclude that the brain is acting as an intermediary to manifest your idea of soul or self but it may not be the source or originator of it… I think that the evidence is beginning to suggest that we should keep open our minds to the possibility that memory, while obviously a scientific entity of some kind – I’m not saying it is magic or anything like that – is not neuronal.”

Lord, now lettest thou thy servant depart in peace…

An average 68 per cent of Canadians favour the legalisation of assisted suicide, but the Court of Appeal in British Columbia has just rejected it. Read more here

The arguments for and against assisted dying, assisted suicide, dying with dignity, call it want you will, will be with us for some time to come, but the outcome is already perfectly evident: in the end we’ll buy it. The debate we’re in now is very close in kind to the debate older readers remember from their youth about abortion. The big difference is that, aesthetically, letting old and very ill people depart in peace is much more ‘acceptable’ than aborting foetuses. 

In response to the recent setback, the Canadian National Post published letters for, against and don’t know. They illuminate the arguments well. Here’s a selection:


* There is no difference between refusing to give pain-killing drugs to patients dying in agony and refusing to assist them in ending their lives when these drugs are no longer effective. Both are unconscionable acts of prolonging torture. Our fellow citizens have no authority to decide when we give birth, nor when we die. Our lives are our own, and when or how we decide to die is up to us.

* Sane citizens must be given the right to die controlled and dignified deaths. If religious people wish to prolong the suffering of their loved ones in some perverted acknowledgement of the “gift of life,” fine, but do not impose that tenet on the rest of us. 

* The average life expectancy in 1908 was 48 years old. So the idea of living beyond our best-before date is a relatively new dilemma for the human race. I use the word “dilemma” because except for the fortunate few who will one day fall asleep and never wake up, most of us will experience a long, painful, debilitating, demoralizing, humiliating drawn-out demise. It’s time to rethink the end of one’s life.


* From legally assisted suicide, there is one short step to legal murder demanded by survivors who are not up to caring or even tolerating having to deal emotionally with death and dying.

* Yes, we all die, and the wages of sin is death. We do not want to suffer much while we are dying. But are not our doctors efficiently trained to control pain? God teaches us what dying with dignity means and it does not mean to kill oneself. It means to trust His promises and to lean on His Son for the forgiveness of our sins and in Him die in peace. That’s dying with dignity.

* We cannot just accept someone’s death wish and agree that their lives are no longer worth living. Instead, we must ease their suffering, provide comfort, and restore their sense of dignity and value.

* I am wary of any law that makes it easier for somebody to kill another person.

* It is time for the dying or suffering to accept the final burden of their own demise and not open the Pandora’s Box of state-assisted suicide. How long would the choice be theirs and not someone else’s?


* I can imagine that if I were in excruciating pain from illness and the prognosis was dire, I’d want the right to be able to end my life — and quickly. However, that is not my situation and so it’s disingenuous of me to presume that I’d actually know what I’d want. This debate should only take place between people who are facing an imminent end to their lives, as well as their loved ones who are watching them suffer. Armchair philosophers should take their wise thoughts elsewhere.

When death is no longer the worst thing that can happen to you

It’s not the worthy efforts of the members of the Dying Matters coalition that have raised awareness of the need to talk about death and dying. What’s actually got more and more of us talking is our personal experiences of the difficult and protracted end-of-life suffering of members of our families. Alongside twenty-first century death agony, extinction is the least we have to fear. Bring it on, goes up the cry, as, just this week, the Falconer Assisted Dying Bill passed its first reading in the House of Lords, Vermont became the fourth state in the USA to legislate for assisted suicide (let’s call it what it is, shall we, Charlie?) and in liberal (if that’s the right word) Switzerland an 80 year old woman in perfectly good health appealed to the European Court of Human Rights to be allowed to go now rather than get any older. She’s had enough, thanks. 

Live issues in this debate are: 1) what constitutes suffering; 2) the right of the state to limit personal autonomy and an individual’s right to self-determination; 3) the duty of doctors to write a prescription for those who ask for a chemical exit; and 4) the protection of those going through a depressive patch or who are susceptible to duress from predatory relatives, etc.

Over time, of course, this is going to reconfigure attitudes to funerals. 

In the context of all this, I was struck by the following letter in last Sunday’s Sunday Times:  

It isn’t just dementia that thwarts our plans. I also dread the disease that robbed me of my mother, and the thought of my daughter changing my nappies and enduring tyrannical rages  and repeated conversations fills me with dismay.

So strong are my feelings that five years ago I wrote a detailed advance directive,  had it witnessed, shared it with my family and lodged a copy with my GP. I take little comfort from this as it  appears that some people — who do not know me but  have some religious or ethical opinion — are insisting they have more rights over my  body than me.

Why should the limited resources of this tiny planet be used on my dribbling, deranged shell when I’ve requested otherwise?

Sue Parkes, Halesowen, West Midlands

How do you define ‘dying’?

Sarah Wootton, chief exec of Dignity in Dying, wrote in Friday’s Times about the case of Paul Lamb, who wants to be allowed to die:  

Dignity in Dying is not fighting for an unfettered right to die, but for the right of dying people to die well. We believe that right must be based on two core criteria: terminal illness and mental competence. Mr Lamb is mentally competent, but not terminally ill. Our proposed law would not help him. 

Any law must balance the rights of the individual against the needs of society. A small but significant minority of dying Britons are suffering unbearably, against their wishes, at the end of life. I am certain that we can implement a law that would give them the freedom to reduce their suffering without compromising the safety of potentially vulnerable people. 

Restricting the law to those with a terminal illness would protect those who have recently become disabled and have yet to come to terms with their situation, or those facing new and difficult, but ultimately controllable, symptoms of a chronic condition. It is also important that patients take the final action themselves. This ensures that they are in complete control of the decision about how and when they die. 

“I am not without a heart,” Wootton says, “but still I cannot fully support [Lamb’s] case.” 

Wootton is taking into consideration here the acceptability of right-to-die legislation to the public. What she wants, 80 per cent of the population wants. Extend the right to people who are simply fed up with living and acceptability plunges to just 40 per cent. 

She may also have been thinking about Belgium, where euthanasia has increased by 4,620 per cent in just ten years. 

In Belgium, there lived two identical twins, Marc and Eddy Verbessem. Both were born deaf. They never married, but lived together and worked as cobblers.

When they were 45 they were diagnosed with a form of glaucoma which meant that they would shortly go blind. When they learned this they were very sad and felt they had nothing to live for any more. They went to their local hospital and asked for euthanasia. The hospital said no.

So they went to another hospital. The doctors listened to their story kindly and empathically. They agreed with Marc and Eddy that their outlook was very bleak indeed and, yes, their lives had lost all value.  So they killed them with a lethal injection.

This happened a fortnight before last Christmas, 2012. It was entirely legal. 

Responses to Wootton’s article are interesting.

Simon Roue says: “Having the debate about whether people have the right to take their own life seems hopelessly outmoded in a society that de-criminalised suicide in the 1960s.” 

Robin Thomas says: “Sarah Wootton is right to draw our attention to the distinction between her campaign (for the ‘dying’) and Mr Lamb’s (for those living in hell). But ultimately I wonder if this is a distinction without difference? Are we not all dying, just some faster than others?” 

Mike Gratton says: “Frankly madam I could not care less whether or not you are with or without a heart. I have a terminal illness and my life is my concern . Keep your “conscience” to yourself. We sufferers feel the pain, not your conscience.”


Weighing the End of Life

ONE weekend last year, we asked our vet how we would know when it was time to put down Byron, our elderly dog. Byron was 14, half blind, partly deaf, with dementia, arthritis and an enlarged prostate. He often walked into walls, stood staring vacantly with his tail down, and had begun wandering and whining for reasons we could not always decipher.

Our vet said he used the 50 percent rule: Were at least half of Byron’s days good days? Or was it two bad days for every good? When you get to the latter, he explained, it’s time.

This conversation gave me pause for two reasons. First, what did Byron want? Was 50 percent good enough for him? How about 70? Or 20? There was, of course, no way to know.

Which brings me to my second reason for pause. When not serving as faithful servant to our tiny dog, I am a geriatrician. Because older adults have a greater range of needs and abilities than any other age group, and because there is a national shortage of geriatricians, I care for the frailest and sickest among them.

To many people’s surprise, most of my patients are as satisfied with their lives as they were when they were less debilitated. But this isn’t true for everyone, and some are eager to say they’ve had enough.

Read the whole article in the New York Times here


Way To Go

From the Daily Mail, an emollient newspaper for those who like to keep their blood pressure low: 

The BBC came under fire today for a new sitcom which makes light of assisted suicide.

A new series starring Blake Harrison, of the Inbetweeners, tells the story of three young men who build a suicide machine and offer the ‘service’ to those who wish to end their lives.

But a prominent Tory MP expressed his disgust at the programme’s premise, slamming it for turning suicide into a joke.

Mark Pritchard, MP for The Wrekin, told the Sunday Express: ‘It is a sad fact that assisted dying is now regarded as a ‘revenue stream’ to some foreign clinics and clearly as a matter of fun by some parts of the BBC.’

The unintended consequence of promoting longevity

Michael Wolff describes caring for his eldery, dementing mother in New York magazine. It’s a long piece and it will concentrate your mind. You’ll brood on it.  Warning: once you start, you won’t be able to put it down. 

…what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it? 

“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws. 

Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources. 

This is not anomalous; this is the norm. 

The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.

Read it all here

What if you’ve just had enough?

Silvan Luley, who is unofficially known as the deputy director of Dignitas, says he is concerned that under current Swiss law the association cannot offer assisted suicides to individuals who are “perfectly healthy”.

Luley said: “The more restrictive you design a law, the more difficult you make it for people to access a dignified end in life, the more people will turn to ghastly methods.

“I can try to talk people out of it. I can try to show people alternatives, but if somebody does not enjoy the sunlight, the smell of freshly cut grass in the morning any more, then what do you do then?”

Full article in the Sunday Times here. (£)