Debate over euthanasia legislation will resume in SA Parliament today, but palliative care providers say an effective scheme will only be successful if quality end of life care is also available to all.
- Palliative care patient Ray Wendelborn, 80, wants to die at home
- Care providers are calling for more investment in the service
- The passage of euthanasia laws has resulted in a bump in funding for palliative care in some states
South Australia’s legislation is likely to go to a final vote in Parliament on June 9.
For Ray Wendelborn, the topic is close to home.
For 20 years he has lived with the knowledge that at any time, cancerous cells could wind their way from his prostate, through his blood and into his bones.
Now, as the 80-year-old sits holding hands with his wife Sue, in palliative care in Adelaide’s north, he knows his time is running out.
While he still has a sparkle in his eyes and a keen sense of humour, the cancer, chemotherapy, radiotherapy and drug trials have worn him down.
“I feel lucky that I’ve gone as long as I have,” Mr Wendelborn said.
“No-one knows when the end is going to happen, but we know it’s getting closer and closer so if I’m here in six weeks’ time, I reckon I will have done extremely well.
“The cancer went to the bones and now is in the marrow so the time is near.”
While his ailing health has resulted in a few recent stays in hospital, he hopes to return home to spend his last precious weeks with family and friends.
“My body’s going to science, so someone will get the benefit.
“It’s likely the immunotherapy that failed me, so someone is going to benefit from that information.”
In a shared room in the palliative care unit at Modbury Hospital in Adelaide’s north eastern suburbs, Mr Wendelborn’s bed is in prime position, with large windows providing a sweeping vista over the hills and city.
The view, and the staff who care for him, provide some distraction from the difficult road ahead.
“I only commented to a couple of them today as they were doing the nasty work of cleaning me up this morning and I said I suppose you would have millions of accolades cast upon you, well now you’ve got a million and one,” he said.
Even though Mr Wendelborn’s life is coming to an end, he counts himself as lucky, living in the “best country in the world”, with children who have remained happily married and provided him with grandchildren.
Retiring from his job as the post office manager in his mid-50s after technology advancements got too much meant he had precious time to spend with his family.
“I would say that I’ve had a lovely time and a lovely family,” he said.
‘Sometimes people just creep into our hearts’
Nurse consultant Valerie Hughes has worked in community palliative care for 13 years.
She is matter-of-fact when describing her daily work, but blinks away tears as she talks about the difficult days.
The ones when she needs to muster the courage to come back tomorrow and try again.
“We have the advantage that, when we meet people, we know that they are very sick, they’re not our family and they’re not our friend and we know that it’s a privilege for us to look after them so that is a protective barrier for us,” Ms Hughes said.
Caring for patients and their families as death draws near is complex.
And western culture, with its focus on preserving the appearance of youth, is ill-equipped to deal with the realities of life and death, she said.
“We do live in a death-defying society where we’re all very worried about how young we look, that we are fit and well … pretending that death doesn’t happen,” Ms Hughes said.
“We do need to pay attention to that because it’s going to come to every single one of us.”
As death draws near, sometimes it’s not physical pain that causes distress.
“There’s more than just physical pain that affects us – we’re a physical, emotional, mental, spiritual being and so it’s no good if we’re filling somebody up with pain medicine when it’s not actually physical pain that’s the problem,” she said.
How people die is a big topic of conversation in South Australia, where proposed euthanasia laws are being debated in the chambers of South Australia’s Parliament for the seventeenth time.
She said regardless of what happens, there is a continued need for investment in palliative care, particularly allied health.
“Often people will say ‘Why can’t we just end this now? Look at mum/dad/nanna suffering,’ and when we look at our patient who’s actually unconscious, laying peacefully, we need to ask the question who is suffering?
“If it’s the family member we need to address that suffering because if we think our patients are suffering, we are going to address that.”
Boosts to palliative care with passage of euthanasia laws
Grattan Institute health and aged care director Stephen Duckett said there was an under-provision of palliative care across Australia.
“People often conflate the two and say it’s one or the other, but they’re actually quite different and what the policy position should be is people who need palliative care should be able to get palliative care wherever they live.”
Interstate, the passage of euthanasia laws has resulted in a bump in funding for palliative care as a sweetener to get legislation over the line in Parliament.
In its submission to a parliamentary committee, Palliative Care South Australia argued that an effective voluntary assisted dying scheme in the state that included all of the legal and medical protections would only be successful if quality palliative care was available to all.
In Victoria, where euthanasia was legalised on June 19, 2019, the government has committed an extra $62 million to palliative care over five years, focussing mainly on people living in regional areas.
Western Australia passed its voluntary assisted dying laws in December 2019, which are due to come into effect from July 1, with $41 million over four years included in the 2019-20 state budget for palliative care.
Queensland’s euthanasia bill has today been introduced to Parliament amid calls from the Australian Medical Association for a major boost to palliative care funding, with warnings the state government’s existing commitment of $28.5 million over four years falls far short of what is required.