Euthanasia is ‘not just about unbearable pain’
As Victoria becomes the first state in Australia to legalise assisted dying for the terminally ill, a health researcher says the legislation is unlikely to help those who most want voluntary assisted dying.
Professor Kathy Eagar, executive director of the Australian Palliative Care Outcomes Collaboration and director of the Australian Health Services Research Institute at the University of Wollongong, does not have an opinion either way on euthanasia.
But she is insatiably curious about the statistics surrounding it.
Legislation key points:
- Assisted dying will only be available to adults over 18 who live in Victoria
- They must be deemed able to make decisions and suffering from an incurable illness
- Patients must be experiencing intolerable suffering, and expected to die within a year
- There are 68 safeguards in the legislation
Those statistics seem to suggest that the debate we have had so far, is all wrong. And she said the new Victorian Bill was limited.
"It's very narrow in scope, it's for people who have a life limiting illness with a life expectancy of less than six months," she said.
"Unless it's a progressive neurological condition like multiple sclerosis or motor neurone disease, in which case it's 12 months.
"They've been very careful and very cautious in the approach, but a lot of the people who've been very strong advocates for euthanasia are not people with a life expectancy of less than 12 months.
"They are people living with debilitating conditions for many, many years and they won't be eligible for voluntary assisted dying under the legislation."
Pain not in the top 5 reasons for choosing euthanasia
But would these people really want to end their lives before 12 months out? After all, isn't this a choice about choosing death over unbearable pain?
According to Professor Eagar, that is not the case.
Professor Eagar said the statistics showed that when it comes to choosing euthanasia, pain does not even make it into the top five reasons.
"People elect euthanasia for a lot of reasons, but the most important is that they don't want to lose their independence and autonomy," she said.
"That's got nothing to do with pain and symptoms, it's a feeling that you're becoming a burden on other people.
"You're finding life less enjoyable, you're finding you can no longer do the things you loved to do, you believe you're starting to lose your dignity — that's the major reasons people are electing euthanasia internationally.
"Concerns about pain are only ever raised by about one in four people electing euthanasia internationally."
That surprises me. I've seen death, it looks painful. I am worried about pain.
So what are the facts? Can palliative care adequately control my hypothetical future pain?
Professor Eagar said there was "very good evidence" about palliative care and its effectiveness both in Australia and internationally.
"Our care in Australia is up there in the top couple in the world," she said.
"It's highly effective for the people who get it, but our big problem is that not enough people do.
"Our estimate is that about 40 per cent of people with a predictable, life-limiting illness, are accessing palliative care, and another 40 per cent would probably benefit from palliative care."
Professor Eagar said outcomes for people in hospital were slightly better than for people living at home.
"But even those outcomes are very good by international standards," she said.
It's more of a social issue, than a health issue
So, if I am in my dying days in hospital, what are the precise chances I will be experiencing unbearable pain before I die?
"The most common reason that people end up in hospital at end of life is because they do develop pain and symptoms that they can't manage at home," Professor Eagar said.
"So about 9 per cent of people will start their episode of hospital palliative care with severe pain, and that will be back to about 2 per cent of those people by the time they die.
"Even with that 2 per cent, they're still able to be helped in some way.
"That's quite different to the perception that's been created in the media where a lot of the conversation has implied that everybody at end of life, has severe pain — 98 per cent of people are not in severe pain when they die."
So if pain gets taken out of the equation, where does that leave the public debate about euthanasia?
It becomes not so much a health issue as a social one.
Do we, as a society, think that people ought to have self determination when it comes to their own death?
You can see how difficult this is starting to become.
Even if you accept self determination as a reasonable principal, what about the vulnerable in society, surely they would need protecting.
There would be all sorts of questions to answer, such as what age should self determination kick in?
Should it only apply to the terminally ill? After all, some people experience ongoing chronic pain without such an illness.
And what about those with mental illnesses?
Women worried about being a burden
Consider this sobering statistic, remember that list of reasons people gave for wanting euthanasia and the line about becoming a burden on your family?
More than half of respondents who offered that as a reason were women.
The very same group who had spent their lives caring for others.
If we never reach the point of discussing all of this, where does it leave us?
With a hotchpotch of individual states, legislating individual laws which may or may not provide access to those who most want the option of euthanasia.
But if we take that brave step and think about euthanasia as a social issue, how does that change the debate?
Professor Eagar said it brings in the issues of individual rights and individual choices.
It becomes about people saying, "I am someone who's had an independent life, I've worked and raised a family and at the end of my life, I want to choose the time of my death".
"That's a very different conversation than thinking that people are in such unbearable pain they feel like they've got no choice but to take a euthanasia option," Professor Eagar said.
"We're such a death defying society that conversations about what people want at the end of life are very hard to have.
"What we've seen in the politics around the euthanasia debate is that arguing about pain is so much easier, everyone can understand it.
"And our politicians have reacted strongly to the idea of people dying in pain.
"The conversation about, 'I am doing this because I want to make existential choices about the end of my life', that's a much harder conversation to have as a community, but it is the one we need."