WA’s voluntary euthanasia laws come into effect next month and, as Cathy O’Leary explains, palliative care is not the enemy.
While the pandemic has been the all-consuming distraction of the past 12 months, preparations for a landmark change in how West Australians can choose to live their final days have been ticking along.
Much of the passion and even anger that ran hot during last year’s emotive debates surrounding WA’s voluntary assisted dying legislation have settled down.
Now there is cautious optimism that common ground can be found among sections of the community that once seemed poles apart on the issue of allowing terminally ill people to end their life using a lethal drug.
Despite initially being seen as incompatible, two big end of life choices – voluntary euthanasia and palliative care – are now actively working to co-exist, with experts arguing VAD is not intended to be an alternative to palliative care.
Rallies outside Parliament House have been replaced with the hard yards of community and health sector consultations and meetings to ensure the laws will be ready to go full steam ahead from July 1, when a backlog of patients is expected.
The VAD landscape in Australia has changed markedly since WA’s Bill was passed in late 2019.
While Victoria is the only state in which voluntary assisted dying is currently available, WA will join it next month and Tasmania has passed laws which should be operational by the middle of next year.
South Australia is also a step closer to having a voluntary assisted dying regime after its Upper House recently passed legislation, while Queensland is expected to debate the laws later this year.
WA laws in a nutshell
Under WA’s laws, an eligible person must be terminally ill with a condition that causes intolerable suffering and is likely to cause death within six months, or 12 months for a neurodegenerative condition.
Eligible doctors and nurse practitioners wanting to participate in VAD need to complete approved training.
The person needs to make two verbal requests and one written request, which must be signed off by two doctors who are independent of each other.
Self-administration is the preferred method, but in a departure from the Victorian system where a doctor can only administer the drug if a patient is physically incapable, a patient in WA can elect for a medical practitioner to administer.
Not everyone is happy with the laws. While critics argue that even with many safeguards, the legislation is still dangerous and open to misuse, some VAD supporters believe the laws do not go far enough to allow people who are not terminally ill to access voluntary euthanasia.
However, Dr Richard Lugg, WA convenor of Doctors for Assisted Dying Choice and a committee member of Dying with Dignity WA, believes VAD is a welcome option for West Australians.
He told Medical Forum that palliative care and VAD were both valid end of life options and, while distinct areas of medical practice, they were not in competition with each other.
“We’re talking small numbers of people who will take up the VAD option, and palliative care will always do the heavy lifting and requires appropriate funding to do so,” he said.
“The movement forward is encouraging but it will take some time, and there will be some sticking points, and some people will never make that transition for their own religious or other reasons, and that’s fine, we understand that, but it won’t stop us from moving forward.”
Dr Lugg said that while VAD would remain a minority choice, its mere existence would provide peace of mind and some therapeutic benefit to many end of life patients.
“It has a sort of halo effect much wider than for the people who actually use it because it reassures people knowing it’s there, even if they never choose it,” he said.
“There should be a seamless ability for patients to do whatever they feel is in their best interest, and there is early evidence that this is already starting to happen in Victoria.”
But Dr Lugg said he was concerned that there were not enough doctors on board in WA to help patients wanting to access VAD, which might cause an initial “traffic jam”.
“We’re working hard to reach out to doctors who may be considering it, to offer them moral support because. even if we have the best system in the world, we need the doctors to make it work,” he said.
“There’s a backlog of people waiting for VAD when it starts on July 1, but there’s not a backlog of doctors who are going to be there for them – their numbers will increase more gradually.”
The WA Health Department’s VAD Implementation Leadership Team, chaired by long-time GP and palliative care doctor Scott Blackwell, has been working to educate doctors and other health professionals about their roles and responsibilities.
Palliative Care WA recently held an online forum at which Dr Blackwell stressed that the availability of voluntary euthanasia was not going to affect the majority of people.
“It’s a new option but we don’t see it as a game-changer because, although it has a popularity of over 80% in WA, we know that only 1-2% of West Australians will choose it,” he said.
“It’s simply a new choice for the people of WA, requested by them and granted to them by their parliament. We’re not implementing a new service, but we are providing a process by which eligible people can access VAD, if that is their choice at the end of their life.”
Dr Blackwell said it was important that within the VAD process a person was informed of the many different aspects relating to treatment – acute treatment, palliative care as well as VAD.
“It is important that a person has capacity both at the beginning of the process and right up to the time they take the substance,” he said.
“Voluntary assisted dying is not to be seen as a simple, separate procedure, it’s part of comprehensive end of life care.
“What we’re really talking about is a West Australian person, who will die soon and is suffering, and a person who of their will chooses VAD at the end of their life.”
Dr Blackwell told the forum there were also possible implications for the family of the person who requested VAD, in terms of needing bereavement support.
“We also need to consider other people such as workforce considerations, because health practitioners are not required to support or assist in VAD, there’s choice for them too,” he said.
“The extent to which they’re involved is a choice, either providing information or agreeing to being an active participant in the VAD process. They need to consider how they will react if someone asks them about VAD.”
Paediatric nurse practitioner Stephanie Dowden, who is a member of the VAD implementation team, told the forum that there were professional obligations for doctors and other health professionals who were approached about VAD.
“I think the community feels a bit more ready for VAD than the health professionals,” she said.
“This is a different system and role for practitioners so it’s very important they look to their self-care. If you’re going to be assisting in VAD we’d really encourage you to join the WA VAD Community of Practice.”
Ms Dowden also stressed that the person accessing VAD had to be able to make that decision right up until the time of their death.
“You must have capacity right up until the moment of being administered the substance, and I know this is an area that many people in the community are really struggling with,” she said.
“It’s the question I get asked the most – is it OK if I get dementia, but the answer currently is no, not under our laws or anywhere in Australia.”
Lana Glogowski, chief executive officer of Palliative Care WA, told Medical Forum that in some jurisdictions such as Canada the palliative care sector had spent a lot of time and effort fighting VAD.
“But we have remained very neutral in the VAD debate, as it was not our place to take a position, and we recognise that the WA Government and the people have made a decision to go with VAD,” she said.
“We’ve taken the view that palliative care is integral to the delivery of VAD in that, going by the international evidence, most people who receive VAD receive palliative care up until that point, so they’re inextricably linked.
“What we want is for people to understand the difference between VAD and palliative care, and I think there are lot of people who don’t understand it and what this legislation means.”
Ms Glogowski said palliative care did not set out to shorten or lengthen life, so by definition VAD does not sit within it. But there was a close connection because people who access VAD often had received palliative care.
“There are still a lot of myths out there about palliative care and many people have it in their head that if you start talking to them about palliative care it means their loved one is going to die imminently, like tomorrow.
“But people can be in and out of palliative care for a reasonable period of time, so it doesn’t mean they’re dying imminently. Palliative care is about ensuring a better quality of life for what life is left.”
She said the VAD implementation and the debate around it had put a greater spotlight on palliative care, and that was a positive.
The WA Government had invested more money in the sector, and from an education point of view, people were starting to get a clearer sense of what palliative care actually meant.
Victorian-based doctors speaking at the Palliative Care WA forum said that since VAD laws were introduced into that state, efforts had been made to establish a culture of choice.
Dr Danielle Ko, a palliative care consultant and the Clinical Ethics Lead for Austin Health, said they had tried to model that at a leadership level by remaining as neutral as possible when talking to others.
She said a staff survey had identified that the allied health and nursing teams were generally much more supportive than the medical teams.
“I don’t think it’s changed end of life or palliative care per se, but as a palliative care physician, if someone is accessing VAD because of their physical symptoms, I feel like I have to try super hard to make sure I’ve addressed those symptoms, so that I’m not the person responsible for them taking their VAD earlier than otherwise.
“You feel like you have to go that bit more now.”
Professor Andrew Weickhardt, a medical oncologist at the Olivia Newton John Cancer Centre at Austin Hospital, said the number of requests for VAD were small and mostly from oncology patients, while a smaller number had chronic neurological disorders.
Most were people who were well-educated and from higher socio-economic backgrounds.
“From a personal perspective it’s been challenging at times, and each person presents unique and different challenges, whether it be specific requests or dealing with family,” he told the forum.
“It’s very important to provide good support for physicians who embark on this because it can be stressful at times.”
Some medical and allied health staff are also worried that if a patient asked about VAD it would be an issue “beyond their pay grade”.
Dr Marie-Christine Carrier, a palliative medicine physician in Canada, told the forum that if people asked to access VAD it was not a failure of palliative care. “It’s just about their suffering and it’s an option for them,” she said.
WA’s voluntary assisted dying laws explained
Who is eligible to end their life?
Voluntary euthanasia is only available to a person who is:
- 18 years of age or older
- terminally ill with a condition that is causing intolerable suffering
- likely to die within six months, or 12 months for neurodegenerative conditions
- an Australian citizen or permanent resident
- A WA resident for at least 12 months
How will it work?
To access the regime, an eligible person will have to make three requests to die — two verbal and one written.
Those requests will have to be signed off by two doctors who are independent of each other.
There will be a minimum of nine days between the initial request and final approval.
Under an amendment introduced by the government during the Bill’s debate, only doctors and nurse practitioners can initiate a discussion about voluntary euthanasia with a patient. But clearly the patient can raise the issue themselves with a health care worker.
And when the time comes, who carries it out?
A patient can administer the lethal drug themselves or choose for a medical or nurse practitioner to do it for them.
A Voluntary Assisted Dying Board will ensure the law is being properly followed through each step of the process.
From July 1, the WA VAD Statewide Pharmacy Service and the Statewide VAD Care Navigator Service will also start. The navigator service will support anyone involved with voluntary assisted dying in WA including health professionals and service providers.
If this raises health concerns for you contact the Doctors Health Advisory Service WA on 9321 3098.