Jos Hall
Talk to DWDACT members – Thursday 19 October 2023
Good afternoon everyone.
As Jeanne said, I was President of Dying With Dignity Queensland for almost 10 years before resigning earlier this year and becoming Secretary of the group.
As Voluntary Assisted Dying was only recently legalised in Queensland, and only became available on the 1st of January this year, you may like to know what has happened since then.
Firstly some info about Queensland.
On the evening of Thursday, 16th September, Queensland became the fifth state to legalise Voluntary Assisted Dying. Queensland state MPs voted overwhelmingly to support legalising VAD, with 61 MPs voting in support and 31 voting against.
This vote followed a year-long inquiry, during which time submissions from the public were called for. Normally, when submissions are requested, a dozen or so will be received, or on occasion, a couple of hundred, so the public servants who were correlating and filing these submissions were completely overwhelmed, when over 5,000 were received.
Four thousands of these submissions were supportive of VAD. None were automatically generated where you just write your name and press “submit”. They were individually typed or sometimes hand-written by a shaky hand. People told personal stories of how relatives and friends had died badly, or how they themselves hoped they could access VAD to end their suffering.
Six politicians from various political parties formed an Inquiry Committee and visited almost every Queensland city and many towns from north to south and east to west of the state. They held public hearings where local people were invited to tell their stories. A rag-tag group of the DWDQ committee followed them to every one of these public hearings. This group of 70 and 80 year olds became affectionately known as the “Inquiry Groupies”.
After a 15 month implementation period, VAD became legally available on 1 January 2023.
To the end of June 2023, 425 Queenslanders have used VAD to end their suffering at the end of their life. This is twice the number of people that used it in Victoria during the first six months it was available there, and more than in any other state where it is available.
I knew two of these 425 people personally, and I would like to tell you how they died – firstly, my dearest friend Gillian.
The other person I knew was Brian who was the father of another friend of mine.
However, there are problems that are common to every state. The major problem is that there are not enough doctors who are willing to be involved.
This is not because doctors don’t support VAD – they overwhelmingly do. There are two main reasons for doctors’ reluctance. Both of these issues are Federally managed and will, as they do in every State, cause problems in the ACT.
- The first is the Commonwealth Criminal Code Act 1995 (CCC Act for short) which makes it illegal to discuss suicide using any electronic means. The States VAD laws say clearly that VAD is not suicide, but the Federal CCC Act implies that VAD is
Commonwealth Laws over-ride State laws. Doctors are notoriously risk adverse, so they are unwilling to risk this grey area that needs to be clarified
The CCC Act means that doctors can’t use a telephone, the internet or telehealth to talk to their patient about VAD. As the patient is usually not well enough to go to the doctor’s practice, the doctor must travel to the patient.
This may not be a huge problem in a geographically small area like the ACT, but in Queensland, Western Australia and in the Northern Territory, if VAD is legalised there, it is a huge issue.
- The second problem is inadequate payment to doctors. There is no dedicated Medicare number for VAD payment, so doctors are paid for a normal long visit only. Payment for a long visit is $70.00.
In Queensland, as in all the States, two doctors are required to assess the patient’s eligibility. The first of these will typically spend an average of eight hours, sometimes less, and sometimes much more, assessing the patient and completing the required paperwork. For this they are paid for two visits.
There is a limit on how often we can ask a doctor who works in a busy practice to do this.
We believe that Dying With Dignity Queensland must continue.
- We need to protect the law that we have. Opponents of VAD are very actively looking for any abuse or any issues at all. You may have heard of a woman who had been assessed as eligible for VAD and had the “substance” securely stored at home. She unexpectedly became acutely unwell and was rushed to hospital where she died. Her distraught husband came home and drank the substance himself.
- We want to do everything that we can to spread accurate information. The government said that it is not their role to inform and educate the public, so DWDQ has taken this on as our job. We currently have over 10,000 people, spread over every area of Queensland, to whom we email a short, easy to read, monthly update. Ten thousand people is a small number of people, compared to the 2 million adults who live in the state, so there are a lot of people who don’t even know that VAD id legal or who don’t have accurate information about it.
Sadly, most doctors also know very little about VAD. Distressingly, they don’t have accurate information, and they don’t know who to contact to find that information.
All doctors have all been sent information by the Queensland Government, but that doesn’t mean they have read it. Even my own doctor, who I have been telling about VAD for years, when she was recently asked by a patient of hers who had terminal breast cancer, said she didn’t have any information about VAD and didn’t know how to find that information.
- We must try to ensure that if a non-supportive government, either State or Federal is elected, that VAD will continue to be accessible. I don’t believe that the law about VAD can or will be overturned, but it would be relatively easy to make it quite difficult to access.
Currently in Queensland, and I believe in Western Australia, doctors are flying to rural, regional and remote areas to assess and deliver the medication, or to administer it. These flights are paid for by the respective State governments. If a non-supportive government removes this travel funding, we can’t expect doctors to cover these costs themselves. Do we make the patient pay for what is currently a free service?
DWDQ anticipated that once legal VAD was available, our membership would drop. People said, well VAD is legal now, why is Dying With Dignity Queensland needed?”
To answer that question, I ask you two questions:
- Do you think that the VAD law that ACT seems sure to get, will be a perfect law that will never need changing?
- If/when you want the ACT VAD law changed, possibly the criteria for eligibility expanded, if DWDACT doesn’t exist, who will lobby politicians to change the law?
So, if DWDACT is to continue to exist, and educate the public, and to protect your VAD law and possibly lobby politicians to expand the eligibility criteria, you will need a far larger pool of people you regularly contact.
I don’t believe that there is anything in your constitution that prevents you adding people to who are not paying members your contact list.
DWDQ increased our contact list from 600 members to 10,000 people by adding people who are not paying members to our list of contacts.
In the meantime, I would like a few of you who are handy with their mobile phone to become DWDQ supporters. There is no charge and it takes less than a minute.
To do this, use any search engine you like. Type in Dying With Dignity Qld and tap to open the website. You may then need to tap the 3 little lines on the left of your screen to see the dropdown tabs. Tap Become a supporter, fill in your info and tap Submit. You have now been added to the DWDQ contact list and will be emailed monthly updates. You can unsubscribe anytime, using the link in the emails, or I can remove your contact info now if you like.
DWDACT is asking for no time frame till death.
Currently all States have a six month time-frame to death, except in neuro degenerative diseases like motor neurone disease where it is 12 months. Queensland has a 12 month time limit for all terminal illnesses. There are diseases that cause suffering for longer than six or twelve months. Most doctors say that it is very difficult to predict how long someone with a terminal illness has to live.
The other issue that comes up in almost every public meeting is the illness that is the biggest killer of women and the second biggest killer of men – Dementia.
Dementia is an umbrella term describing the loss of various cognitive functions, such as memory, thinking, and reasoning.
Alzheimer’s disease is the most common cause of dementia and lasts 8 to 10 years on average but can last more than 10 years. To be eligible for VAD, a person must be mentally cognisant, not only when they request VAD, but also when they are about to take the substance, or have it injected.
So, people with dementia are between a rock and a hard place.
DWD State groups are all hoping that ACT can get a better VAD law than what we have and how we will use that to relax our own criteria.
Thank you everyone for coming to this meeting – I hope that I have given you a lot to think about.