Life is a Terminal Illness
For almost 40 years, it was my privilege to watch and medically assist mothers (and many fathers) to prepare for a new life. However, it is my belief that the medical profession is not doing enough to assist us at the other end of life. Sure, we have excellent palliative care services that are generally available but, even with the best of these, at least 5% of us are destined to experience a painful or undignified death that could be avoided if there was access to voluntary assisted dying (VAD), often called euthanasia.
Furthermore, good palliative care is only possible when some doctors are willing to stretch the rules a bit and help some of their charges with judicious access to a little extra medication. However, to do this, leaves them wide open to a charge of “murder” by vigilante associates.
This is a community issue that requires community action in parliamentary legislative reform.
Andrew Denton’s Apple Podcast from the Full Story Series dated 12th April 2012. The first 10 – 15 minutes of this interview alone is the most powerful and succinct summary on the current status of the issue. I can recommend it.
There are parallels with abortion law reform and termination of pregnancy, an aspect of my former professional life that was never completely resolved during my period of practice in the discipline of obstetrics and gynaecology. However, many states of Australia, and countries throughout the world, satisfactorily enacted abortion law reform many years before the state of NSW.
What I am Doing
So, I am assisting in a campaign to get a bill through the NSW State Parliament in 2021 that would permit doctors to assist terminally ill patients to opt for voluntary assisted dying (VAD).
Of all the possible arguments against VAD, the most difficult to defend is its potential misuse and or the “the slippery slope” argument. The only defense is good legislation. That is why I support the West Australian (WA) model.
See https://ww2.health.wa.gov.au/voluntaryassisteddying and click on “Voluntary Assisted Dying in Western Australia” for a précis.
A good summary is:
“To be eligible for voluntary assisted dying, the person must meet all of the eligibility criteria. This includes that they:
- are aged 18 years or over
- are an Australian citizen or permanent resident who has been ordinarily resident in Western Australia for at least 12 months
- have been diagnosed with at least 1 disease, illness or medical condition that is advanced, progressive and will cause death; and, will, on the balance of probabilities cause death within a period of 6 months (or 12 months for neurodegenerative); and, is causing suffering that cannot be relieved in a manner that the person considers tolerable
- must have decision-making capacity in relation to voluntary assisted dying
- must be acting voluntarily and without coercion
- must have an enduring request for access to voluntary assisted dying.
To access voluntary assisted dying a person must be independently assessed as eligible by two medical practitioners. These medical practitioners must meet certain requirements and have undergone mandatory training. They may also refer the person for additional assessments if required.
During the process the person must make three separate requests for voluntary assisted dying: a first request, a written declaration and a final request. The written declaration must be witnessed by two people (who meet specific requirements).
Voluntary assisted dying may be through self-administration or practitioner administration of the voluntary assisted dying substance this is a decision made in consultation with the co-ordinating medical practitioner. If self-administration, the person must appoint a Contact Person who has specific responsibilities, including return of any unused substance. If practitioner administration this may be done by a medical practitioner or by a nurse practitioner (who meet specific requirements).
The death certificate must not include any reference to voluntary assisted dying.
Throughout the process the person must be informed of many different aspects relating to voluntary assisted dying, as well as their treatment and palliative care options.
Fundamental to the process is that it remains voluntary and free from coercion. The person can withdraw or revoke their involvement at any stage.
Health practitioners are also able to refuse to participate in voluntary assisted dying for any reason (including conscientious objection).
Health care workers must not initiate discussion about, or suggest, voluntary assisted dying to a person to whom they are providing health or professional care services. The exception to this is for medical practitioners or nurse practitioners if, at the same time, they also inform the person about treatment and palliative care options available to them and the likely outcomes of that care and treatment.”
Living as I do in NSW, I would not have access to the end that I may need in my own Advanced Care Directive if the WA model were to be enacted here. I am in favour of the Canadian legislation (also proposed by doctors in Ireland) that is no specified time period in which a person is expected to die. Instead it would be better that the person is simply affected by a terminal illness that is progressive and incurable. Apart from being more humane, this avoids arguments often raised by opponents to VAD who point out, quite correctly, that it is very difficult to predict how long a person will live.
Furthermore, to overcome the problem of any condition that renders a person incapable of expressing a desire and or consent for assisted dying, I support the waiving of final consent when the person has unequivocally stated their wishes in an Advanced Care Directive.
However, this legislation would provide NSW residents with the secure knowledge that, in the event of a terminal illness, they would have the option of a legal and dignified exit. And it would legally protect my medical colleagues who choose to assist them. For both, just as it is in the abortion debate, it is all about personal CHOICE, which I hold to be a universal human right.
What You Can Do
If you, like I, believe that we all have the right to die with dignity and without interference from the moral views of others, then you may support this very conservative legislation.
At this point in time, it is mostly about numbers. It’s as easy as 1, 2, 3:
- Please join DWD NSW in a petition in support of the legislation. Go to https://dwdnsw.nationbuilder.com/petition_2020
- You can help more if you “Sign Up” with DWD (Dying with Dignity) NSW, see https://dwdnsw.nationbuilder.com/membership. To do more you may wish to Join or Donate to DWD.
- If you feel very strongly about this you could recruit 3 friends, neighbours or others using this page or material that you can find on the DWD webpages.
A Message to Doctors
Somewhat surprisingly, whilst upwards of 85% of the general community supports VAD, this falls to as few as 40% when doctors are surveyed. The reasons are complex. However, ours is a carefully orchestrated campaign that aims to have the numbers “on the floor” when the MPs come to vote.
We anticipate a vociferous push back from a minority who wield considerable political power. Some of that minority are doctors, and therein is our special dilemma. Our MPs are told to “listen to the experts” so they often turn to medical professionals in their community for advice. We need a committed core of health professionals who are willing to provide a viewpoint that is not biased by a political agenda or personal religious beliefs.
I support the following values and principles:
- Every human life has equal value.
- A person’s autonomy should be respected.
- A person has the right to be supported in making informed decisions about the person’s medical treatment, and should be given, in a manner the person understands, information about medical treatment options including comfort and palliative care.
- Every person approaching the end of life should be provided with quality care to minimise the person’s suffering and maximise the person’s quality of life.
- A therapeutic relationship between a person and the person’s health practitioner should, wherever possible, be supported and maintained.
- Individuals should be encouraged to openly discuss death and dying and an individual’s preferences and values should be encouraged and promoted.
- Individuals should be supported in conversations with the individual’s health practitioners, family and carers and community about treatment and care preferences.
- Individuals are entitled to genuine choices regarding their treatment and care.
- There is a need to protect individuals who may be subject to abuse.
- All persons, including health practitioners, have the right to be shown respect for their culture, beliefs, values and personal characteristics.
These are taken from the Discussion Paper by Irish Doctors in support of Medical Assistance in Dying (MAiD) whose complete text I can recommend. It includes the most contemporary analysis of current practice that I have found.
You can help by joining Health Professionals for Assisted Dying (HPAD) Choice, see https://www.hpadchoice.org.au/join_hpad
Voluntary Assisted Dying in Action in Australia
Victoria was the first state in Australia to legislate VAD laws that came into practical effect in July 2020. The follow is a summary of what has happened since that time:
- 581 people have been assessed for eligibility to access voluntary assisted dying
- 465 permit applications have been made
- 405 permits have been issued
- 224 people have died from taking the prescribed medications.
The report provides details about who is accessing voluntary assisted dying:
- applicants were aged between 20 and 100 years and the average age was 71
- 47 per cent of applicants were female
- 36 per cent of applicants were from regional Victoria
- 87 per cent were living in their own home at the time of the application
- the care navigators supported 1059 people seeking information
- 67 per cent administered the medication themselves
- 77 per cent had a malignancy diagnosis, such as lung, breast or gastrointestinal cancer
- 23 per cent had a non-malignant diagnosis, with 62 per cent of this group having a neurodegenerative disease
The independent Voluntary Assisted Dying Review Board plays an important role in assuring the community and health practitioners that voluntary assisted dying is closely and independently monitored and reviewed.
The full report can be found on a webpage provided by the Victorian Agency for Health Information that is ostensibly for “doctors only” but there is nothing to prevent anyone access using https://www.bettersafercare.vic.gov.au/reports-and-publications/voluntary-assisted-dying-report-of-operations-july-to-december-2020
Jill Nash recommends the ABC documentary Laura’s Choice and the movie Blackbird.
Images from Coffs Coast Stalls can be found using this link to my OneDrive:
16th April 2021