00:00An educator, communicator and traveller with a mind as sharp as ever, Gail Ford says she's
00:08lived a fortunate life, but she's open about what Parkinson's disease has stolen.
00:13The first sign I had Parkinson's was my handwriting and now it's totally illegible.
00:19Communication was very important and now I can't communicate.
00:22Text message might be two lines wrong, it could take me ten minutes.
00:25I mean, a reasonable short paragraph might take half an hour because there's so many mistakes.
00:32Several years ago, Gail had direct brain stimulation surgery, a procedure that got her back to
00:37what she calls 70%, but then came 2024.
00:42Talking about unusual illness, oh my gosh, I was five months, I think, in six different
00:48hospitals.
00:49My speech is much worse and I really can't socialise at all.
00:53Well, they don't probably ignore you deliberately, but that's in fact because they can't understand
01:00you.
01:01When I say something, they'll reply quite to different things, and so they sort of don't
01:08make contact to avoid that sort of experience.
01:12Gail wants to choose when to die.
01:14I think it's important to have a choice and to die with dignity and everyone has that
01:20should-hurt ability because death for many people is not dignified and it's not pleasant.
01:27We are really being much more open in these conversations and the reality that we're all
01:33going to die someday and let's do everything we possibly can to improve our quality of lives,
01:39every day up until that time.
01:41After years of debate, the ACT Voluntary Assisted Dying Scheme is finally beginning.
01:46There's a lot of thirst for knowledge, but not just around Voluntary Assisted Dying, but
01:50more as it is as an end-of-life option, not an alternative to palliative care.
01:56To qualify, a person must have an advanced and progressive medical condition that is expected
02:02to cause death and is causing intolerable suffering, but also decision-making capacity.
02:08There are ten steps, including multiple assessments from qualified staff and proof that an applicant
02:14is acting voluntarily without coercion.
02:17Once you're in it, you're not committed to it.
02:19You can stop.
02:20But you can also pause.
02:21And so it might be that things, you're just not 100% sure of where things are right now
02:27and you may want to give it a couple more weeks until your next assessment.
02:31The ACT scheme is unique in not requiring a diagnosed time frame until death.
02:37And no other jurisdiction has nurses trained as practitioners.
02:40So we have 29 Voluntary Assisted Dying authorised practitioners.
02:45That is a combination of medical practitioners, nurse practitioners and registered nurses.
02:51Anyone who's been through the process of supporting someone at end-of-life terminal illness, it's
02:57tough.
02:58And I feel absolutely privileged that I have the opportunity to be part of something that
03:02makes life and death better for people.
03:04Darlene Cox leads the Oversight Board that will scrutinise the scheme.
03:08We're monitoring it to look for opportunities to improve the service, to make sure that there
03:12are sufficient safeguards in place, that people really are entering into this voluntarily,
03:17that there is no coercion.
03:19There are some calls to include people living with degenerative conditions that won't directly
03:24cause death, like Alzheimer's or Parkinson's disease.
03:27Certainly the government's made a commitment to next year, undertaking community consultation
03:32about that very point.
03:33And the bigger picture is we want equitable access.
03:36Anyone who would benefit from Voluntary Assisted Dying, who wants to exercise their right to use
03:40it, how are we making sure that they're supported to do so?
03:43Choice is key.
03:45Studies have certainly showed that people will access Voluntary Assisted Dying but never
03:49use it because they may have the substance there and it's sitting there.
03:53It's almost a bit of an insurance policy in case everything just becomes too hard.
03:59Gayle doesn't want to wait until things become unbearable and has already decided to apply for
04:04the scheme.
04:05I think about like a ship with brimsel lines, you know, they sink for no brimsel lines, they've
04:09got too much on board.
04:10I've had a good life, I've had a full life, and I'm lucky I can say that, I can look back.
04:14So I've had a very full life, and why should it go on to a bitter ending?
04:20It's called quits.
04:21It's called quits.
