"Too many people dying in pain"

An interesting email from Dying With Dignity. It makes some very relevant points about the act of dying in Australia, with much dissatisfaction with end of life care. There's also some real life stories down the bottom from different people (I've added mine but it's waiting moderation). This is what researchers found when investigating the dying experience with the relatives of those who had passed. Written by Adele Horin.

The anger ordinary people feel about the modern way of dying came as a surprise to the researchers. No-one at the Council On The Ageing had quite expected it. When COTA surveyed 1600 people in NSW aged 50-plus recently on a range of health issues, one concern stood out: a profound dissatisfaction with end-of-life care. 

And the people expressing the views were those who knew what they were talking about. They had sat at the bedside of a dying person or been closely involved. It was to people with such first-hand experience that this survey question was addressed: Was palliative care enough to provide a comfortable end to life? 

And 27.7 per cent said ‘no,’ the palliative care had not been enough. In some regions the ‘no’ rate exceeded 30 per cent. “I was expecting a single digit figure. To have more than one-quarter of people feel dissatisfaction with the palliative care received was pretty bad,” Ian Day, COTA NSW’s chief executive officer, told me. Lisa Langley, COTA’s policy manager, said: “And the scary thing we found was that [people said] the pain management was inadequate.” Almost 25 per cent of those unhappy with end-of-life care blamed “poor pain management.”

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Yet this survey, though not statistically representative, confirmed most people want more control over the end of life: 76.8 per cent “believed people should have the legal right to control the timing and circumstance of their own death”; and 77.9 per cent answered yes to whether they could “think of any circumstances where [they] might contemplate being helped to die.” In this survey of older people, there was not the usual overwhelming support for dying at home – only 54 per cent said “yes” to that proposition, perhaps because many have seen death can be messy. I’ve written about this before. more