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New research published in the Medical Journal of Australia examines the barriers that patients face in accessing voluntary assisted dying, as well as the supports in place.
One of the biggest concerns for patients in Victoria seeking to access voluntary assisted dying (VAD) was the difficulty of raising the topic with their doctor, new research has found.
Researchers from Queensland University of Technology interviewed 32 family caregivers and one patient about the experience of patients seeking VAD in Victoria, as part of a larger study into how best to regulate VAD.
The research is published in the Medical Journal of Australia and made several recommendations, including:
- improving access to VAD in Victoria;
- increasing the pool of doctors willing and qualified to be involved in VAD;
- requiring doctors who will not provide VAD to refer patients to a willing doctor; and
- investing in system supports, such as adequate funding for both the statewide pharmacy service and VAD care navigators.
Professor Ben White, the Professor of End-of-Life Law and Regulation at the Australian Centre for Health Law Research at the Queensland University of Technology, said many patients had difficulty raising the topic with their doctor.
“One of the barriers described by patients was how hard it was to raise the topic with their doctor,” Professor White said.
“A patient may be sitting in a consultation room with their doctor, but be afraid to ask about it because they do not know the doctor’s position on VAD.
“Doctors of course have the right to object to VAD on conscientious grounds, so patients are fearful of what reaction they might get.”
Doctors not able to raise the topic
Professor Ben White said that doctors in Victoria cannot raise the topic of VAD with their patients.
“The Victorian VAD law is very unusual in this regard and the topic of VAD can only be raised by the patient.
A doctor cannot raise it with their patients or suggest this as something for them to consider, with the goal of avoiding any potential for coercion or undue influence.”
Telehealth unable to be used for VAD
Ruthie Jeanneret, a PhD Student also at the Australian Centre for Health Law Research at QUT, said another barrier identified by patients was the inability for doctors to use telehealth for VAD consultations in Victoria (here and here).
“This stems from a Commonwealth law prohibiting a carriage service from being used to counsel or incite suicide or attempted suicide,” Ms Jeanneret said.
“There is a real risk that if clinicians use telehealth to conduct assisted dying consultations, they may be breaching Commonwealth law.”
This law impacted the ability of people in regional areas and with neurodegenerative conditions from easily accessing VAD advice, Ms Jeanneret said.
Finding an appropriate doctor
Another barrier for people wishing to access VAD was finding an appropriate doctor.
“Participants explained that it was particularly difficult to find the first doctor or ‘coordinating medical practitioner’ to help them through the process,” Ms Jeanneret said.
“Another barrier was the time that it actually took to get through the entirety of the VAD application process.”
What was working well
Professor White said the study also examined what supports were working well for people seeking to access VAD in Victoria.
“The role of the voluntary assisted dying care navigators was absolutely crucial,” Professor White said.
“These are state-funded health professionals who are based at Peter MacCallum Cancer Centre in Melbourne and at five regional health centres.
“Their role is to assist patients under the system and help them through it.
“Our research found the people in these roles really helped patients and their families understand the process and navigate the health system.”
The research also found improvements in the bureaucracy over time for patients in navigating the health system.
Read the research in the Medical Journal of Australia.
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Refusing to allow easy access to even the first consultation is an easy way to limit access.
Refusing to allow telephone etc consults makes it much much harder for many people struggling to cope for various reasons.
All in all, it looks like officialdom giving with one hand, taking it with the other, hiding behind bureaucracy as it does so.
Shameful.
Historically and internationally the vast majority of doctors are opposed to VAD on ethical grounds.
If the community wants this, there is no need for doctors to be involved.
We can and do give appropriate palliative care, and do all that is humanly possible to ease suffering. That is how it should be.
I wish people in regional and metropolitan area of Australia could be interviewed to look at barriers and enablers of access to palliative care . Alas likely no funding for that sort of research .
Participants being recruited from Right to Die websites really limits these findings – as they acknowledge . Reports are from caregivers not those seeking VAD – apart from one. So there is another bias . .
I don’t think drs should ever suggest to a patient that he or she should consider having their life ended . How many patients would have to be told this gif one to want it ? Drs don’t tell every patient about the option of abortion . So why the difference with this ? How upsetting it would be for a dr to suggest this .
VAD by Telehealth is unsafe .
Institutional mandates are wrong & careful transfers out can be organised .
I think people expect too much. Given the lack of easy or any access to community pall care for many patients – why should fast easy access to VAD be so prioritised ? At worse they die naturally – like people have been doing for centuries .
Why do VAD patients get their drugs hand delivered anywhere in each state by 2 pharmacists ? People needing opioids for pain relief get no such help . Very unfair .
So it appears that doctors practising VAD are already complaining about having to comply with legislation, and are now lobbying to extend beyond it eg wanting to be able to raise the topic with patients and to utilise tele health technology. Alarmingly, there has been a recent move in the ACT to give minors access to VAD. All of this represents the ‘slippery slope’ that were assured would not happen. Most doctors do not want to be involved in VAD which, in my view compromises our long and tightly held medical ethics. I would suggest to James Hurley that most are “conscientious objectors” and this explains the difficulties in recruitment
As medical practitioners, we should do whatever we can to comfort our dying patients, and if that involves reassuring a patient that a horrible death can be avoided by acceding to their request for VAD, then that is a doctor’s obligation regardless of the doctor’s personal views.
I recently had a call from a dying friend, not a patient of mine, who said “ Hey, I’ve got really good news, I’ve been granted permission for VAD tomorrow, 10 am”. We must never deny dying patients this relief at a time when nothing much else helps.
The call for Telehealth consults for VAD to be relaxed is a danger. All doctors should know that face to face encounters provide the best way of doctor patient inrteraction.
I continue to ask why is VAD a job for doctors? We are already very short of medical staff time in all areas of medicine, is this really what the community needs us to do? I think not….
WE are trained to help improve quality or quantity of life not to take active measures to end life – separate to providing palliative care to optimise quality.
If having insufficient Drs prepared to engage in VAD is an issue, doesn’t that tell people that finding other people to take on the job might be better than trying to compel/cajole/persuade medical staff to do it might be more successful….. Medical certificates for prognosis is all Drs need to be responsible for, the rest should be done outside the medical system.
True to type for the euthanasia proponents- get a toe in door and chip away at it – everyone should take a look at the catastrophe in Canada- this 25 minute interview with Dr Green in Canada and the Victorian legislation is discussed- the inclusion of psychiatric illness in the Canadian criteria is imminent so I do admit to a conflict of interest- with bipolar disorder if you have a symptomatic period of psychotic depression the risk to myself (and thus my family and friends) is hideous.
For those practitioners who consider that assisting someone to take their own life is morally repugnant, trying to compel them to refer a patient to help them kill themselves will not be effective. Such a doctor would rather go to jail than do something reprehensible. The AMA is strongly opposed to this suggestion.
If we are going to have VAD, banning doctors suggesting it to patients is an excellent rule, IMHO.
I am VAD practitioner [in Victoria] and can add to the points made here to state that in my experience, most doctors are not ‘conscientious objectors’, more often they simply do not know what to do or say when discussing death and feel ‘bereft’ when they face it in their patients.
I echo the statement that “The role of the voluntary assisted dying care navigators was absolutely crucial”