ON RULES, DESIRES, AND A CARELESS DEATH

Death creeps up on us. Recent news reports tell of the death of architects Peter Heathwood and Arata Isosaki. Both had impacts on our lives; both will be missed. One realises in these situations how one is defined and changed by others:

Arata Isozaki

https://www.dezeen.com/2022/12/29/arata-isozaki-dies-architect-pritzker-prize/

and

Peter Heathwood

https://www.architecture.com.au/archives/news_media_articles/vale-peter-dickson-heathwood#:~:text=Architect%20Peter%20Heathwood%20died%20last,destined%20to%20become%20an%20architect #

Closer to one's life is the recent death of a close family member. The intimacies of death are revealed in such personal circumstances. These private experiences are usually glossed over with exultations about a life and work in other less close circumstances. One can only be aggrieved, such was the terrible and unnecessary experience that highlights the farce of systems that seek to be otherwise. We need to take heed of this humbug and change things now, instead of repeatedly ignoring the problems.

"You should document your end of life wishes so that, when you are unable to have your say, your wishes are made explicit " Such was the advice given to us. It seemed a reasonable idea, so we downloaded the form and filled it out - Queensland Advance Health Directive (Form 4).

The details that could be recorded were challenging - intimate, specific, and precise. One was encouraged to and could document exactly what one wanted to occur: where; what; who; who not; and more.

The completed form was signed by the doctor to prove that one was of sound mind, and understood what one was doing, and then the whole document had to be taken to a JP for a formally witnessed signing. Prior to this event, one was again quizzed to ensure that one knew exactly what the form was about, such was the nature and importance of this legal instrument.

Having completed this tedious, testing process, the document was filed away with the other important papers in one's life. Now one could relax in the knowledge that the end of life conditions had been fully documented, if not choreographed, complete to one's desires.

The call arrived: a close family member had been put into palliative care. One had been aware that this might be likely perhaps months ago, but life struggled on with a grim resolve to maintain pride, control, and independence. This family member was determined and knew what he wanted. Intentions for the end had been made very clear to the family: he was not ever to be left in a vegetative state, or to become a burden of care and concern for any family member. The body had been donated to science, so everything was clear and predetermined: he could rest and relax in the knowledge that things had been sorted. He would go into palliative care towards the end to remove the load of worry from the family: the day had come.

Palliative care was not the envisaged or promoted relaxed, comforting, consoling ending. Rather it meant being put into a room alone, with all medications removed, and the door locked.* One could not be allowed the risk of dying too early at a time of one's choice, or be left to roam. One wondered: was death funding based on days, purposeful delays to generate more cash income for the 'coloured corporate carer' that was an expert at manipulating government payments to maximise profits?

This incarceration was so intolerable that it did not take long - just one night - for the calls to come to demand removal from this situation: the patient was taken home to die without his 'dangerous' sleeping pills being returned - such is health 'care'; but this plan was not straightforward. It seemed that there were specific rules for dying.

The drugs were provided for the family to administer, with every item and action having to be documented in the formal register. Morphine every two hours, or 'as needed,' was the direction that left the obvious question that lingered with every other drug too: one to create brain fog; another to stop nausea - ironically, a dying person could not feel sick; another to manage body fluids - the noises sounded like repeated death rattles.

The family with no medical experience at all, was left with the responsibility of handling all of this 'treatment' day and night. A nurse would call in every 24 hours, or perhaps 'as needed,' to overview events.

Who is going to define the conditions for 'as needed.' How does one ever know? One knew what was needed but the law forbade this act, a fact noted by the wary first nurse who commented that she had grandchildren to look forward to sharing life with in the future. Was this 'as needed' merely a suggestive challenge? Who might turn a blind eye? If only!

We arrived the next day; yes, he wanted to see us. Already the voice had gone, but it was clear that he could hear in between fading in and out of a consciousness shrouded in a haze of drugs. One had seen figures like this before: the living dead at the gates of Auschwitz with the world decrying the inhumanity of the situation. Why was this happening here?

If a healthy body had indulgences in the drugs that this body was receiving, there would be a prosecution: but here we had 'health care' managing a situation with both inhumanity and drugs, 'to let nature take its course' was the statement made in a similar earlier circumstance - as if this might be natural - when the wishes had been declared that this should never happen. Was this payback for refusing to play by the palliative rules? No food or drink was being given or taken. It seemed that, if the diagnosed disease did not kill, then it might be either hunger or thirst. This was exactly what had been defined as the unwanted condition of a lingering death.

Another day of tortured existence for all passed. Which nurse might call today? Hopefully it would not be 'that one' who showed so little empathy.

The call came: no, we have just seen 'that one' lunching at the local sports club, so it'll be one of the others. An hour later, 'that one' walked in. She headed straight for the drugs and started checking the register and counting, accounting. Then, astonishingly, she began going through the used trash, making a statement about single-use plastics as she sorted out the injecting tools that could all be reused. It seemed that one did not have to worry about cleanliness or any mixed reuse with the dying. The nurse's attention gave no notice or recognition of the dying family member in the adjacent room.

We left the house as the booster drug mix was being prepared for the delivery. While out, after a short sojourn, we called into the local cafe for a cool drink on our way back to the family. To our surprise the nurse was sitting at a table filling out her forms. It seemed that her concerns for paperwork and plastics in between times at the club and cafe were far more important than any thought about caring attention or intimacy as life was allowed to carelessly drag on drugged in spite of the explicit intentions having been made. She recognised us but said nothing, ignoring our polite comment to her. The family was left in an unfortunate and embarrassed muddle. "He would hate to know that this has happened. It's everything he did not want."

Health care, so it appeared, had its own momentum and intentions that took no cognisance of personal wishes. The circumstance was cruel and demeaning - totally unwanted and unacceptable. A previous relative who had gone through a not dissimilar experience, had perceptively pointed out that one would have been prosecuted if one had treated a dog in this manner.

One was left wondering: why bother filling out any end of life documents when one's wishes mean so little? It was clear that action is needed to resolve the legal discontinuity between what one's desires might be and the laws of death. Health care seemed to mean more about health workers caring for their own roles and avoiding all blame rather than being of any true assistance to the dying and acting on the wishes of an individual who could no longer say what was wanted: he certainly would have if he could have.

As everyone hung around waiting, it took another twelve hours on the third day of suffering for death to come. It was an unhappy relief for everyone. Sadly, the wishes of the departed had been totally ignored; but surely he would get his last wish of donating his body to science. He had been involved in experimental treatment, so all the researchers were keen to receive this generous donation. He had joked with one researcher that he could have his body, "but not yet."

The funeral director arrived to take the body with the bland news: "This is a holiday period; they are not accepting bodies at this time." Alas, there were few other options than an expensive, unwanted cremation.

So, in the end, not one wish of the departed had been implemented - not one. One is left wondering, given the rules of death and the Australian commitment to holidays, why one should bother making any decisions about one's death and beyond? And why should one care for science?

This point was emphasized by the recent death of a friend who had signed off his body for science too with all the very best intentions: he had been too sick for the body to be accepted! It seems that one has to die healthy and not in a holiday period for a body to be 'scientifically' useful. One has to express serious concern with science and research in Australia that is not prepared to put itself out; and for death care too, that is happy to ignore one's wishes in favour of the rigours of 'due process' and 'principled accounting.'

Such is death, it seems, with everything turning out to be different to one's wishes - well, indifferent; for who really cares when this chaotic disregard is allowed to occur?

Immediate change is needed so that stated wishes can be thoroughly and properly respected, and fully and properly implemented without the family having to assume the rude responsibility for supervising death as an unwanted and unnecessary delay, holiday or not.  Terminal insult and undignified suffering linger on as the memory of all the brutally and ungraciously mangled ambitions for a managed ending to a life.

We need much better than this hopeless, hapless shambles that is a true disgrace; a real affront to intimate declarations: simply callous.

Why should anyone bother with any form of Form 4 when this occurs?

#

Why ‘vale’?

https://www.onlymelbourne.com.au/vale-farewell-goodbye

Is it woke to do this, to begin an obituary with 'vale'? Might this word be used if those who choose to do so know it is pronounced 'wale,' invoking wail; a wailing for the dead? It seems that there are other stylish intentions here: bespoke woke?

*

Note:

A comment made to this story by an individual who works in care situations tells that it is illegal for a carer to lock up any patient other than one who has formally been sectioned. This major, self-promoting, church institution obviously didn't care, knowing that it would never get caught out.

A psychologist noted that proper palliative care was a loving, accommodating situation where all of one's requests were fully, sensitively, and carefully responded to positively - yes, all requests, whatever they might be.

One has to be seriously concerned with this 'Christian care'; it was more like a bigot's judgement. Little wonder that the church in the western world has become so irrelevant when it's values have been transformed by greed and profits.

One is left wondering how many folk suffer daily at the hands of these brutes? We can record that we have had a personal involvement with this ‘true Australian’ care group in other circumstances. We have found an identical carelessness in all the dealings we have had with all levels of management. If the institution is not passing the buck on to others, or blaming those in care, it is phrasing sly words in slick sentences to try to prove things otherwise; or, more usually, one is just ignored. It is a skill perfected by the CEO and all those 'carers' below.

God help us!