Category Archives: Good death

The Home Death Movement

Tuesday, 28 June 2011

I’ve been reading an interesting research report published last month in Australia. Its title: Bringing our Dying Home: Creating community at the end of life.

It examines how networks of unpaid carers can supplement the services of professional carers and enable dying people to die at home. It shows that the lot of unpaid carers need not be one of drudgery, anxiety and isolation, but an experience which enhances bonds in families, among friends and within the wider community. It asks this important question: What if the Home Death Movement (of which there is undoubtedly a global one), named itself as such and claimed a place at the decision-making table?

The report begins by stating how things are now: Most people die in institutionalised care – usually a hospital – resulting in the modern death becoming “cellular, private, curtained, individualised and obscured” This type of death can mean that people “die badly in places not of our choosing, with services that are often impersonal, in systems that are unyielding, struggling to find meaning in death because we are cut off from the relationships which count most to us.” That most people do not experience dying and/or death in places of their choosing is an astonishing fact; a fact that, collectively, we are either ignorant of or just silent about. It is a fact that speaks to our failings as a society at a time of life that occurs for each and every one of us. [P7, refs omitted]

The report concludes: In the research reported here we found that people can and do care for their dying at home with the help of informal networks of community members. And they do it well. This is not to say that it is easy: it’s not. However, people overwhelming felt privileged and honoured to be involved in a caring network at EOL. Participants successfully mobilised and negotiated complex webs of relationships and engaged in acts of resistance to the Western, expert-based approach to EOL care. The knowledge and skills they developed as a result of the experiential, embodied learning about caring at EOL contributed to the development of social capital and community capacity for the people in this study. People’s relationships, on the whole, increased and intensified and these changes were maintained over time. [P8. EOL = end of life]

Importantly, the report adds that the professionals have a duty to support unpaid carers: In order to make sure that these networks are sustainable and that people who provide unpaid caring are not exploited and isolated, informal carers, and networks, need supporting. Carers need permission and practical hands-on help to gather caring networks together and to negotiate the type of help they need … We would also like to see organisations that provide paid care at EOL take on an active role in promoting death literacy and facilitating and supporting informal caring networks from a community development – or health promotion – perspective.

A Home Death Movement. Yes, we need one of those. This excellent report shows us that, far from being an anxiety-raddled ordeal, the experience of caring for our own as they lie dying offers rich rewards both to individuals and to society.

I am indebted to Hermione Elliott, director of LivingWell, DyingWell, who are, later this year, piloting a similar project in East Sussex, for sending me a pdf of the report, which I can’t upload because the filesize is too big. Email me and I’ll send you a copy: charles@goodfuneralguide.co.uk

 

 

A time to die

Sunday, 30 January 2011

Every week in the Spectator magazine Peter Jones takes an occurrence or development in contemporary society and politics and considers it in the light of what the ancients did when faced with the same circumstances. This week he considers the art of dying. I’d now bung you a link but I can’t: the Speccie does not unleash its content online til it has gathered some dust. The joy of the Spectator lies in the quality of its writing (sadly not its politics). It’s almost worth the cover price for Mr Jones alone. I hope he won’t mind a quote-strewn precis.

He begins:

“So everyone is going to live much longer and will therefore have to work much longer to pay for their pensions. But what is so wrong with dying, Greeks and Romans would ask?

“Homeric heroes sought to compensate for death with eternal heroic glory … Plato argued that the soul was immortal. The Roman poet Lucretius thought that was the problem. For him, life was an incipient hell because of man’s eternal desire for novelty. So as soon as he had fulfilled one desire, he was immediately gawping after another. What satisfaction could there be in that? The soul was mortal, he argued, and death, therefore, should be welcomed as a blessed release.”

Cicero concurred. We run out of things to interest us and are glad to go. “A character in one of Euripides’ tragedies put it more succinctly: ‘I can’t stand people who try to prolong life with foods and potions and spells to keep death at bay. Once they’ve lost their use on earth they should clear off and die and leave it to the young.’

“For Seneca the question was whether ‘one was lengthening one’s own life — or one’s death.’ “

Jones concludes: “Marcus Aurelius put it beautifully: ‘Spend these fleeting moments as Nature would have you spend them, and then go to your rest with a good grace, as an olive falls in season, with a blessing for the earth that bore it and a thanksgiving to the tree that gave it life.'”

Broken survivors

Saturday, 13 November 2010

Watch the full episode. See more FRONTLINE.

Superb if gruelling documentary examining end of life issues from PBS.

One of the contributors is Judith E Nelson, professor of medicine at the Mount Sinai School of Medicine and associate director of Mount Sinai Hospital’s Intensive Care Unit:

The burdens of intensive care can be very, very heavy, and the outcomes are often not good. So we have to face this extraordinarily difficult challenge of knowing when to use this miraculous technology and for how long and knowing when to try to preserve for people a peaceful and dignified process of dying. Walking that line is the very hardest part of my job, and constantly recalibrating myself from one side of it to the other.

Although we can never be 100 percent certain until the moment of death that someone is dying, there are clinical situations where the odds are so overwhelming that someone can[‘t] survive the hospitalization in a condition that they would find acceptable, that we can see that outcome and compare that with the burden of the treatment. When it is virtually a foregone conclusion that that unacceptable outcome is going to occur, then using this technology to support the physiology of the patient doesn’t make sense. And it is invasive, and it’s burdensome.

It’s a situation in which a person is completely dependent for all of their care on a nurse and a physician; where the patient cannot even attend to their most personal care and has to be cleaned from head to toe and every place in between by another individual; when they’re not even awake. And our nurses do that in the most unbelievably respectful way, but still, it’s a part of this experience. It is being attached to machines with constant noise from alarms and signals. It is being surrounded by electrical devices and monitors, with no control over any of your bodily functions, quite literally. And although we strive as hard as we possibly can to prevent discomfort, it’s probably impossible to prevent it at every moment. So there are discomforts, and one hopes rare but occasional pain and other kinds of distress, fear, delirium. All these things are occurring for people.

In addition to that, you’re in a bed that has side rails to protect you from falling, but also may make it more difficult for the people who love you to get close to you. Even if there’s open visiting in an ICU, which some ICUs have and some don’t, it is not a place where loved ones move about freely. They’re uncomfortable and unhappy and fearful. And all of that is part of the surrounding. So it’s a very disconnected, depersonalizing and occasionally even painful and frightening experience. I don’t think anybody wants to die that way. I think most of us, not everybody, but most of us would be willing to go through it for a good outcome, but nobody wants to be like that if nothing good is going to come of it.

Full interview transcript here.

At the end

Friday, 24 September 2010

I was struck by the sweetness of this in the Victoria Times Colonist (Deaths and Funerals):

“Life provides a puzzle for us when we outlive our friends, when we forget our memories, and when the new technologies pass us by, but we are ever loved when we remember our manners and treat others with love and respect.”

It is in quotation marks, but I think it is original.

Practicalities and suicide pacts

Saturday, 21 August 2010

Here’s a highly recommended post over at the Exit blog: Heartache of a death not shared — a helium suicide fails.

It discusses this story as reported by the Times:

Early one morning in September, William Stanton heard footsteps coming up the stairs of his cottage in Somerset. He knew who it was and panicked. “I shouted out: ‘Go away, Nigel, leave me to it, leave me to it!’”

Nigel, a neighbour and family friend, did not go away. He came into the bedroom and found Stanton in distress and his wife Angela lying dead with a plastic bag over her head.

The Stantons had made a pact to end their lives together and put it into effect just days after the director of public prosecutions revealed how he would apply the law prohibiting assisted suicide. It did not work out as they planned and stands as a terrible cautionary example for anybody thinking that self-inflicted death is easily arranged…

The sun that bids us rest is waking

Monday, 3 May 2010

It’s going to be interesting to track the development of, both, the right to die and its concomitant, the responsibility to die. Old age doesn’t just become physically unendurable, it gets to be economically unaffordable, too.

The darkness is increasingly going to fall at our behest. Choosing the moment will be straightforward enough. Humans live in the future. Our zest for now resides in our expectation of what lies in store for us next. We’ll know when we want to go:  no next, no point. Pass the dose, doctor.

Here’s a new poem by Fleur Adcock in this week’s Spectator:

Charon

Where is Dr Shipman when we need him
to ferry us across the fatal stream
and land us gently in Elysium?

Shipman, boatman, ferryman – whatever
the craft he plies to help us cross the river –
we seem to have been waiting here forever.

How did we get the timetable so wrong?
Things are becoming vague, and we’re not strong.
Life was OK, but it went on far too long.

When we’ve forgotten how to keep afloat,
Scoop us up, Doctor, in your kindly boat,
And carry us across the final moat.

Putting death where it belongs

Thursday, 19 November 2009


Time was, when life was hard, death wasn’t so bad, especially if you believed, as so many did, that your recompense for a life of unrelieved misery and privation here below was the reward of unlimited bliss up there. The prospect of paradise makes a lot of sense when you inhabit a vale of tears. And it makes it easier to die, too, both for the dying person and for those around the deathbed. “He’s gone to a better place,” people used to say to each other knowingly, comfortingly. And they felt the justice of it, truly believed it, even looking forward, somewhat, as they said it. But what was once an attractive offer has lost its allure. We lead lovely, comfy lives, now. We’d rather stay where we are, thank you.

It’s the lack of any inclination to contemplate anything better that accounts for attitudes to death today. Call it denial if you want, but I think you’d be missing the point. It’s more the case that we’re having such a lovely time playing out with our friends that we simply don’t hear Mum calling us in for our tea.

You feel the aftermath of this as a celebrant, sometimes, when you go to visit the freshly bereaved. You walk into shock. Paralysed disbelief. It makes no sense to be planning a funeral. Why, he could just be upstairs. The absolute absence of the dead person has yet to begin to make itself felt. And what I often think, as I sit on the sofa while everybody tries to get their head around the presence of this extraordinary stranger, is ‘I wish he was upstairs’. Nothing would better translate unreality into altered reality and enable everyone to get their heads around it.

Dying is bad and it’s getting worse. Now that the priests can tempt no more than a few of us with a next instalment that’s going to be even better, the government dangles before us, instead, the allure of the good death and the new Personal Care at Home Bill. I have my reservations about this good death myth and about the desirability of dying at home. It’ll suit a few of us, for sure. But drawn out decrepitude and protracted expiration call for very expert attention. Nursing homes and hospitals are exactly the right places to be.

In summary, therefore, dying at home can be overrated; being dead at home cannot.

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