Is it possible to have a good death?
Bianca Nogrady
(September 17, 2013)
*
We spend much of our lives fearing death, so the notion of a 'good death' seems a contradiction in terms. But is it possible to achieve a good death?
*
Talk to people about the kind of death people want to avoid and almost everyone has a story to share. It may be of a grandfather diminished and ridiculed by dementia until he is incontinent, incoherent, and bed-bound; or a young friend wracked with the agony of cancer that no amount of morphine can relieve.
If there is such a thing as a bad death, it stands to reason that a good death is also possible. But what makes a good death, and how can it be achieved?
It's a difficult concept to define, says palliative care physician Dr Christopher Gault.
'After 20 years, I have not the vaguest concept of what a good death is,' he says. 'The idea of a good death has connotations beyond being peaceful.'
In 1999, the authors of UK report The Future of Health and Care of Older People came up with a list of principles outlining a good death. They included knowing when death is coming and what to expect, the ability to retain control of what happened, to be afforded dignity and privacy, to have access to hospice care, and to have control over who is present and shares that final experience.
Retired US surgeon and author Dr Bernie Siegel believes that last principle to be especially important.
'When people say, "My brother died," I ask, "What time of day did he die, who was with him when he died?"' Siegel says. "If they say he died at two in the morning alone, I'd say that is not a good death. But if they say he died at two in the afternoon with the family sitting around him, I'd say he was okay... he has not failed anyone and he felt secure in that dying, that you all knew it was the right thing for him."
It's about choice
Another principle critical to a good death, according to the 1999 report, is to have control over pain relief and over other symptom control. This is not so much about having all symptoms taken care of but about having control over how much pain relief and other treatments are given.
This is important because, perhaps surprisingly, not everyone wants to be eased into death. Some, like Dave, choose to face it alert and awake.
After 18 months of suffering from various respiratory problems, Dave was diagnosed with an aggressive secondary tumour growing out of the mastoid bone behind the ear. The tumour was pressing on his brain stem, and it was inoperable.
According to his wife Angela, his attitude was, 'If this is what I have to do, I want to do it. I want to do it well, I want to do it properly, so I just have to get on with it.'
Dave died just eight weeks after the tumour was diagnosed. In his last week, he and his wife struggled at times with the medical staff because Dave was determined to be conscious and aware, which meant compromising his pain relief. The staff also struggled with having someone so obviously suffering physically, but who did not want that relief.
Then one morning, Dave's breathing had changed to a pattern that often heralds death, but he was still conscious.
'He opened his eyes, and I said to him, "Honey, can you see the light?"' Angela recalls.
Dave's answer was a simple nod, but due to the location of his tumour, this nod itself was an extraordinary thing. The tumour was pressing on the nerves that normally enable a nod, so previously the most Dave could manage was the faintest of head tilts. 'But this nod was the chin right forward on the chest and right back,' Angela says. 'It was an absolute definite nod. And I said to him, "Honey, you go into that light and you rest."'
And once again came a clear nod. A few moments later, Dave took his last breath. 'So he was absolutely conscious till the end, which was what he wanted, and how he responded meant he gave me a beautiful gift.'
An easy death
While Dave chose to limit the amount of symptom control he received at the end, most would define a good death as one in which there is little or no suffering.
Medicine has come a long way in managing suffering at the end of life, particularly thanks to the efforts of palliative care, but that doesn't mean death will be pain-free.
In his 20 or so years of experience, Gault has seen the full spectrum of death experiences and believes that the vast majority of patients do achieve what he would consider a 'peaceful' death.
'There will still be ups and downs; we can't remove every single symptom for every minute of every day – that's just not the way the world is,' he says. 'But I've seen it all the way through to the other spectrum, where we've not been able to do much good for any symptoms and it's all been a complete nightmare for everybody concerned.'
Ultimately, death is a lot like birth. Today, women are encouraged to make birth plans to help them achieved a good experience of birth, and death should be no different. If a good death is all about choice and control, then it relies on us as individuals to know what choices we would make, and to take steps to ensure those choices are respected as much as possible.
* * *
Principles of a good death
01) To know when death is coming, and to understand what can be expected
02) To be able to retain control of what happens
03) To be afforded dignity and privacy
04) To have control over pain relief and other symptom control
05) To have choice and control over where death occurs (at home or elsewhere)
06) To have access to information and expertise of whatever kind is necessary
07) To have access to any spiritual or emotional support required
08) To have access to hospice care in any location, not only in hospital
09) To have control over who is present and who shares the end
10) To be able to issue advance directives which ensure wishes are respected
11) To have time to say goodbye, and control over other aspects of timing
12) To be able to leave when it is time to go, and not to have life prolonged pointlessly
*
No comments:
Post a Comment