What will I do if…..

I have this terrible fear of spending my last years sitting in a nursing home with my dick hanging out of borrowed pajamas, dribbling studiously at the aquarium as the yellow Hurricane fish play rugby against the blue Waratah fish, waiting for a personal carer to spoon just enough gruel into me to keep me ticking over – not actually living, just breathing.

Our nursing homes are becoming clogged with little old ladies sitting silently in the autumnal sun, smiling secret Mona Lisa smiles as their bladder sphincters relax and the warm glow of urine floods their incontinence pads.

I do my bit by taking a megadose of folate to ward off the spectre of Altzheimers but I want more – I demand the member for Menzies to allow me to exercise the most basic of rights – the right to die.

Of course, because I live in the Territory, I could exercise, for about fourteen months, the right to die. But that was taken away by that paragon of religious virtue, the same Minister for Aging when his private members bill overturned the NT legislation.

Putting aside the unfairness of a representative of another jurisdiction proposing legislation that has nothing to do with him, the Australian health care system is going to grind to a halt because the whole budget will have to be spent keeping brain-dead babyboomers comfortable and comatose in nursing homes across the country.

in 1995-96, the Labor Party, when in government, was spending $2.5 billion, $2,500 million, on aged care. We are currently spending some $4.2 billion, $4,200 million, on aged care

we are on the threshold of one of the most dramatic demographic shifts so far as Australia’s history is concerned. That shift is when the great bulk of the population¢â¬âthe baby boomers¢â¬âbegin to retire in the next few years and become the retired generation of Australians. One can envisage that, in 15 to 20 years,, naturally we will have a much greater older population of Australians.

For a couple of years after we were married, my wife and I stayed with her grandmother. Ahhh, wonderful memories of lazy Sunday mornings in that big double bed… but I digress. Ada was adamantly against her grand-daughters marrying older men. She married Jim, fifteen years her senior, when she was in her teens and spent the first part of her life raising children and sitting around the kitchen and the last fifteen years caring for an embittered old man frustrated by the stroke that left him paralysed. Twenty years after we moved out I visited Ada in Wesley House and was too frightened to answer her plea to assist her find an end to her pain and embarrassment. You see her body had broken down leaving her in constant pain and unable to perform the most basic personal hygiene functions, but her brain was as sharp as ever, she lived in hell.

In 1992 our 15 year old son was diagnosed as suffering from Ewings Sarcoma, an aggressive form of bone cancer. The cancer, originally confined to his rib, invaded his lung, spine, hip and femur. The decision to care for David at home occurred by default. There was nothing more the traditional medical system could do, we would try and care for him in our own way somewhere both we and David felt comfortable, at home. When he came home that last time David continued to refuse acknowledgment of the disease at all. His legs hurt first. Whether it was the cancer or just lack of movement we don’t know. On reflection we didn’t know much about anything. We didn’t discuss the situation with David, if he refused to acknowledge the magnitude of the disease, then so would we. Everybody just got on with the day to day minutiae. Including the GP and the district nurses. The GP didn’t know us very well and so at first seemed reticent about allowing us to treat David unsupervised. The most sensitive aspect was the supply of increasing doses of morphine. We suspect that, because the GP and the district nurses had been told that the patient would probably die in less than ten weeks, they didn’t worry overmuch about developing a medium to long term palliative care strategy.

Death devoured him. Scoured the flesh from his bones and turned him into a smiling skeleton. All the bones jutted out from his body. Where the flesh touched his bed it turned black and died, then rotted into a suppurating sore. First his hip, then his back, then the side of his knees, then his heels and last his shoulder and the back of his head. Most of the time he just lay still, drifting in and out of morphine induced unconsciousness. Except when he was in pain. Then his lips turned back from his teeth and he looked awful. His eyes sunk in their sockets, the intercostal muscles on the right side shrunk and his ribs thrust out from his chest. His lung action was only slight and he had this habit of, while sleeping, to take a deep breath then not breathe again for about
twenty seconds and you never knew when or if he would start breathing again.

On the left side the hole left from the excision of his ribs and lung turned burnt brown from the radiation and the skin flaked off as though it was badly sunburnt. It’s said that the eyes are a window to the soul. David’s eyes remained beautiful limpid pools until the day he died. As he lost weight his face shrunk but his eyes stayed the same and seemed to grow larger. He could express almost anything with his eyes, raise an eyebrow in question, wink wickedly in jest, radiate unlimited love, cry in unimagined agony. I don’t think I will ever see anybody that was as dignified as David. I use the word “dignified” advisedly because I can think of no other that adequately describes the manner in which he dealt with the disease. David died on August 6th, seven months to the day he was given “weeks to live”. Luckily it was a peaceful death, and we were not required to face the momentous decision of whether or not I had the courage to “assist” him.

I insist that I have the right to die. The Act passed in the NT assembly wasn’t about euthanasia as such, it simply legalised the right of an adult to exercise the most basic of rights. During the stem cell debate the clowns in Canberra waffled on about the rights of unborn babies but deny adults similar rights when it comes to choosing the time of their death. They shout about the ‘slippery slope’ but legalising the right to die shouldn’t necessarily lead to the greedy grandson helping granny off quickly so that he can get his hands on her harbourside property.

Last night I picked up an old mate and brought him home to watch the Super 12 game. In his young days Roger was a legend, a real pants man; he lived with the most exotic black woman, traipsed around the world presenting papers to uranium conferences in Paris, meeting mining magnates in Hong Kong and every time he came back from gold prospecting in Indonesia he was loaded with gold jewellery. He played rugby on the wing and won gold medals at the Masters games well into his fifties. Two years ago he had a stroke. Now he’s but a phantom of his former glory. He laments the loss of the way he was and contemplates an existence in a nursing home with horror. What will I do if he asks me to help him die?

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Jacques Chester
Jacques Chester
2024 years ago

Of course I cannot relate to your experience as a person who watched a loved one die in such awful circumstances.

The closest I came to such an experience was the passing of my grandfather. He came down very suddenly with parkinson’s disease; and almost overnight he went from a towering intellect to a barely conscious vegetatitve state. It was heartbreaking. He simply gave up, we think; and passed away naturally in three weeks.

On Kevin Andrews’ overturning of the Rights Act, I once offered a very firey opinion of him and this action that nearly got me fired from my employment, at the time, as a political staffer.

Now that I am no longer employed as such I am happy to place on the record how I feel about Kevin and what he did to honest Territorians. Historical inaccuracies and all, herewith my letter on the matter:

“The Euthanasia bill sharply divided opinion here in the
Northern Territory, and significantly it was not decided
on party lines.

Everybody had an opinion and almost everyone had a say
about it.

The Legislative Assembly listened, participated, and
then eventually voted on the matter.

It was a wholly democratic decision and everyone knew
who voted for and against.

Kevin’s decision to use a shameful aspect of Australian
Constitutional law to overturn the Rights of the
Terminally Ill Act was just another example of high-handed
social engineering that Territorians have suffered from
day naught.

Since 1911 when we passed to the Commonwealth,
generations of Territorians have fought an uphill battle
against ignorance, arrogance and neglect from the
Commonwealth Government. Ironically it took Gough
Whitlam to begin the process of a truly independent

Ever since 1978, when we attained self-government, the
relationship between Territorians and the Commonwealth
has significantly improved. Kevin’s decision to use the
Commonwealth’s essentially unlimited power over
territories was offensive and retrograde, and pretty
much made a mockery of a century of struggle, heartache,
and progress.

We were “put in our place” by an officious pipsqueak
from nowhere who did not represent us, did not know
us and who didn’t care. You can bet your bottom dollar
that if David Tollner could put and did put out private
member’s bills overturning the laws of Sydney, Melbourne,
Brisbane, Adelaide, Perth or Hobart there would be
a bloody great stink.

But since we were only redneck territorians, no worries.
Just bend ’em over and beat ’em, seems to be the
attitude of people like Kevin Andrews.

It was offensive, it was arrogant, and as I said, a
lot of people in the NT considered it to be unforgivable.
I have no time for Kevin Andrews. I don’t expect that
I ever will.

In 2008, the Northern Territory will again go to a
referendum on Statehood. During the next 5 years the
Liberal Club here in the NT will be focused most closely
on this issue. The drafting of Constitutions is a task
which only every third generation gets to undertake,
and I intend to stop the ALP and pressure groups from
writing in all sorts of idiocy. I will not let them
lay their curses on those who are yet to come.

But when the time comes, the Commonwealth will need
to play its part. And in the same fashion that the
Australian Liberal Students Federation has shown true
leadership on the question of inclusive federalism,
I will hope that it will show the way again by supporting
the NT’s bid for Statehood.

There’s a lot of hope up here. A lot of energy. I
love the NT, and I will be busting a gut to see that
the kind of heavy-handed slapdown we suffered at the
hands of Kevin Andrews will never happen to us again.”

Ken Parish
Ken Parish
2024 years ago

“They shout about the ‘slippery slope’ but legalising the right to die shouldn’t necessarily lead to the greedy grandson helping granny off quickly so that he can get his hands on her harbourside property.”

I supported the principle of the Rights of the Terminally Ill Act at the time, for precisely the reasons Wayne puts so powerfully. However, I had concerns about the detail, also precisely because of the “greedy grandson” syndrome to which Wayne alludes. The Act allowed 2 medical practitioners to certify that a person suffered a terminal illness. Unfortunately, there is evidence that there are at least some doctors prepared to play fast and loose with those sorts of certifications. Witness the good Dr Phil Nitschke, who has supported and (carefully and indirectly) assisted people to suicide who WEREN’T terminally ill.

An analogous situation is abortion law in the NT. Similar to the legislation in some other states and territories, it allows legal abortion up to 14 weeks pregancy if 2 doctors certify that:

“(i) the continuance of the pregnancy would involve greater risk to her life or greater risk of injury to her physical or mental health than if the pregnancy were terminated; or

(ii) there is a substantial risk that, if the pregnancy were not terminated and the child were to be born, the child would have or suffer from such physical or mental abnormalities as to be seriously handicapped.”

There are clearly some doctors who interpret these provisions so loosely that what we really have in practice is abortion on demand. Note that I’m not arguing AGAINST abortion on demand up to 14 weeks (in fact, albeit with some reservations, I support it), simply pointing out that legislative provisions permitting a serious act (e.g. killing) on certification of any 2 medical practitioners is an illusory protection, at least where substantial numbers of doctors believe the law ought to be more liberal. Some will simply interpret it as if it already was.

I would have been happier if the NT euthanasia legislation had required certification by government medical officers carefully chosen to ensure that they took their certification duties under the Act seriously enough to be trusted only to issue them when a person really WAS suffering a terminal illness. Those sorts of safeguards would certainly have made the legislation more cumbersome and bureaucratic, but in my view they’re very important. The “greedy grandson” syndrome is by no means as far-fetched or uncommon as Wayne seems to be suggesting.

2024 years ago

Yes there are and will (always) be the Nitschkes and the Kevorkians who believe strongly enough to bend any law pertaining to the right to die. Note that I continue to use the term ‘right to die’ and not confuse the debate, as is the common tactic of the religious right, by constantly referring to ‘the slippery slope’ of euthenasia. I think the two are quite different and should be the subject of separate laws. As I have written to the Select Committee;

As the Chief Minister said in the second reading of the bill, “The problem for patients who wish to end their lives is that they cannot be assured of finding a sympathetic doctor.” The rights of the competent patient should be absolute. These rights as summarised by John Stuart Mill, also quoted by the Chief Minister, indicate to me that it doesn’t matter what the doctor believes, whether or not it is offensive to the doctors understanding of his legal or ethical situation, the patient should be able to exercise the most basic right of all, to live or to die.

“When is enough, enough? When has one the right to ask for relief from unbearable suffering? When all means have failed and life no longer has any quality. Physical pain can usually be relieved by palliative means but the psychological pain, the depression associated with the loss of ability to function, to be totally dependent on others for even the most essential and common toiletries, even to blow one’s nose, is dehumanising. Some people have the spiritual fortitude to cope with this dependence, but for many it is a burden too hard to carry.” (Australian Family Physician/Vol 23 No 6 June 1994 p. 1064)

To quote from the Territory AMA submission, “Doctors are not educated in the matter of ethics, medicolegal medicine or the dying patient. The expertise or lack of it that they exhibit in these matters is entirely a result of their own level of interest, studies and life experience.” And further, “Nurses have even less training than doctors in matters of ethics and the legal aspects of medicine and death.”

The summary conclusions of the British House of Lords select committee listed in the same submission recommend maintenance of the status quo and includes, inter alia, “training of health care professionals should prepare them for ethical responsibilities”, suggesting that not even the British system, held up by both the Territory AMA and the Right to Life sponsored Robin Bernholt as the last word on the efficacy of palliative care, has all the answers when it comes to ordinary GP’s being given the responsibility to decide the ethics of any particular case.

The solution to the problem of doctors untrained in medicolegal ethics or those simply unwilling to assist their patients is the establishment of a separate body responsible for “required certification by government medical officers carefully chosen to ensure that they took their certification duties under the Act seriously enough to be trusted only to issue them when a person really WAS suffering a terminal illness” as suggested by Ken. My proposal is along similar lines.

In his letter to the Chief Minister, Brendan Nelson stated, “Attempts to legislate the relationship between individual doctors and their patients creates an environment in which the doctor and patient see each other as potential adversaries inevitably at the expense of the patient.” (AMA Submission to the Select Subcommittee). It therefore seems to me that the easiest method of overcoming this and many of the other criticisms made by both the AMA and the Right to Life, is to amend the bill to remove the responsibility of dealing with the Certificate of Request from the
untrained medical profession.

I suggest the establishment of a Review Tribunal, consisting of three people; one with a legal/ethics background; the second, an experienced psychologist or psychiatrist, preferably with palliative care experience; the third a community representative/patient advocate, perhaps some-one who has had experience of a loved one dying a protracted death. The terminally ill patient initiates a request for assistance (verbally or in writing) to the tribunal which investigates the circumstances (interviews the patient, the family, the medical practitioner) and, only if unanimous in it’s decision, approves the request. If the current medical practitioner is uncomfortable about compliance with the request, the tribunal assists the patient in obtaining the services of, and transfer of the patient records to, another medical practitioner.

2024 years ago

The fact that some people will try to misuse/abuse, whatever many or most laws is hardly a basis for NOT trying to legislate. I suspect that the majority of politicians do believe legislation ought to be passed, but fear an organised backlash. I’ve spoken to one politician who had no doubts about the need for euthenasia to be legalised, but voted against it for fear he’d lose the support of some preselection voters next time around.
In the meantime, I’ve taken the only steps possible to avoid a slow decline into mental decay, by choosing my anscestors carefully. They have tended to live reasonably long’ but go quickly. Now it’s just a question of whether I’ve been lucky enough to have collected a reasonable sampling from their collective gene pool.

2024 years ago

By the way, the sudden deep breath and a long pause is, I believe, called Cheynes-Stokes breathing and is typical (indeed symptomatic) of people about to die of some wasting disease.

Perhaps if the old join the ALP and volunteer to be a human shield in Gaza, I’m sure that JWH and Mr Andrews will look upon their deaths with complete equanimity.

2024 years ago

The intent to preserve life is honourable but a human body is the only thing that one owns exclusively. So intruding on that right should be considered carefully. Euthanasia, abortion, guns,gays and drugs are subjects dominated by people that wont to control others and why do they have that right?