Too many people dying in pain

August 12, 2013
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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.”

There had been earlier hints end-of-life care was emerging as a big concern for baby boomers and their parents. In smaller focus groups COTA had conducted with 50 people drawn from all walks of life, a topic of great interest turned out to be end-of-life care – from the practicalities of dying at home to ensuring compliance with advanced care directives.

In recognition of the latent anger and the hunger for information, COTA bumped the issue to the top of its agenda. It dumped plans to hold a forum on workplace issues – a serious enough problem for mature-age people – to hold instead a forum in the NSW parliament house called Let’s Talk About Dying. You can see a video of the proceedings here. So great was the interest, the forum had to be changed to a bigger room and registrations to attend had to be cut off two weeks early.

Why are so many people angry? COTA, which will soon release four reports based on its health survey, provided me with the responses on palliative care. Here is how some people described their experience:

“Pain relief was not sufficient (liver cancer and secondaries). Father attempted to hang himself with dressing gown cord and died in psych hospital 2 days later which we felt was very inappropriate.”

“My husband had cerebral metastasis, his quality of life diminished, he had severe headaches, lost all his independence, asked for help to die, stopped eating, forced to endure pointless suffering.”

“The person was very agitated right to the end. (Very distressing).”

“Terrible experience in a Catholic hospital with a palliative care ward but poor nursing admin and staff. Resulted in my lodging a 12 page complaint that they swept under the carpet. It made end of life caring extremely hard and resulted in an unnecessarily ‘hard’ death for patient and resulting extreme stress for family.”

“Appropriate medication is not legally available. I am a retired Registered Nurse and I have seen too many painful deaths in hospital patients and close family members and friends over the years, nothing much has changed.”

“Even morphine did not relieve the suffering.”

“The person had a long painful and ungraceful death. They put dogs down in better condition than this person was in.”

A weakness of the survey is that it’s unclear exactly when people had their experiences – last year, a decade ago? Great strides have been made in more recent times to ensure better quality of life for people with advanced-stage diseases and little hope of cure. But even so, as Ian Day said, whether a dying person receives palliative care at all and how good can depend on where they live. Is there a skilled palliative care team in a region or suburb that can visit a dying person at home; does the local hospital have palliative care specialists to ensure a good hospital death? Well that depends……

At the parliament house forum, a palliative care specialist, Dr Megan Best, agreed that “too many people have seen someone die a bad death.” But she added, “It shouldn’t happen ….. We must do better. We can control the majority of symptoms.”  Many in the otherwise well-mannered audience of older people hissed Dr Best when she said that “suffering is not a medical problem, it’s an existential problem that exists beyond physical pain….When suffering has meaning, it can be tolerated.”

Most people, judging from the COTA survey, do have positive experiences. Dozens of statements attest to loving, competent end-of-life care provided at home or in hospices or hospitals. “Excellent and compassionate use of pain management,” said a typical respondent.

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.

Many Australians don’t trust our under-funded, patchy palliative care system; they talk from bitter experience. And it’s time politicians understood how big an issue this is.

What’s your experience been? Please click on ‘Comment.’

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