The article detailed below, in full, was submitted to me with permission to publish it. I have made a couple of very minor alterations, all grammatical. I want to say a sincere thank you to the gentleman concerned in sharing his story outside the family. From my point of view it encapsulate the very reason why I spend time, money and effort in maintaining activism for legislative change….
Please fellow readers of My Diary, imagine that Ron’s story could be any one of ours. Our strength is truth, justice, reason, and above all human understanding. Please lobby Politicians in all States of Australia to help make a difference for others still in Ron’s position, somewhere in this great country of ours……
The unedited version of Ron’s story is to be found under “Additional – Related Readings” on the drop down menu top bar.
SET OUT BELOW FOR FAMILY POSTERITY, IN MEMORY OF MY LATE FATHER, IS AN EXPOSE’S OF THE LAST TWO YEARS OF HIS LIFE AND SOME PERSONALLY EXPRESSED CONVICTIONS SUPPORTING END OF LIFE DECISIONS
19/10/2005
As the consequence of having been a constant visitor to the locally fully occupied nursing homes over an extended period of time, this statement of facts, attempts to cover the last two years of my father’s life that he could have, well done without.
I would like to commence by airing some personal observations of the need for more respect for autonomy of our prior expressed wishes, either written or un-written concerning our options where end of life decisions are concerned.
Today in this era of enlightenment, medical advancements and life style changes can prolong life un-necessarily making it possible for the body to go on, long after all quality of life, has diminished. As the result of this life extending medical technology, more people in the future will die in palliative care hospital wards or nursing homes, like my father, often through necessity rather than choice. This is a reality.
I have been motivated to compile a brief narrative of my father’s last two declining years of his dysfunctional life which hitherto, had been a healthy one. I feel very comfortable in describing his prior life as ” healthy”, for at 93 when initially hospitalized, unlike myself, he was on no medication of any kind, which I found quite remarkable.
My father died on my 68th birthday aged 95 which over-shadowed the day. Like his own father before him who lived to 99 years and seven months, one can only marvel at such an extension of life. With forward planned birthday arrangements in place, all our family raised their glasses in the drinking of a toast to him at the time of his passing. Being all relieved for my father’s sake that he was now released from his suffering. Instinctively, some may think that we were callous to be celebrating at a time of mourning. Callous? No!.
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Why do some people find it so difficult to accept that the almost taboo subject of death is part of the natural life cycle and so often to be welcomed by the person concerned, which in my dad’s sad debilitated situation, was certainly the case?.
It was not long after my mother died at age 89 (a tragic story in itself) that my father, aged 93, was diagnosed with a slow irregular heart beat which required a pace-maker. When this was conveyed by the cardiologist, I queried the merit of such a move for one so old. I asked about battery maintenance but was told that “we put them in at a hundred and as for the battery he won’t be needing it” Whilst this prognosis proved correct, we could not know that this pacemaker would, in the end prolong his suffering – something I wondered about at the time, but never really knew until a few days ago.
As a returned serviceman and in recognition for services rendered in the line of active duty, he had a veterans gold health card entitlement, which deservingly allowed his $33.000 pace maker implantation. This procedure was undertaken in a private hospital where-after he was hospitalized for four weeks recovery and convalescence in a private ward at a cost of over $400 per day, with this cost also being borne by Veteran Affairs.
Upon release from hospital, he was only home a few days when he unfortunately suffered a stroke. Following this event which we thought may have been exacerbated by the implant surgery, he was readmitted back to hospital for a further month’s observation and recovery. Arising from his stroke, it was at this point in time that we found his mind to be regressing into a detached state of dementia. Upon his release, only one hour after returning home, dad suffered a further stroke thus resulting in immediate re-hospitalization for a further month, with the costs also being carried by Veteran Affairs
To their credit this clearly indicates the recognition and respect extended to our aged returned service men/women for their war efforts.
During this hospitalization the “Aged Care Assessment Team” – (A.C.A.T.) arranged for him to spend a short time in respite care in a nursing home and where- after he received a government funded bed in the same establishment. During the next few months of settling into his new found surrounds, and as we’d feared most, one night he had a major fall, which predictable enough resulted in a broken hip
With it being the weekend and his hip requiring immediate surgery he was admitted to the local community hospital where the surgeons operated via necessity and inserted a prosthetic hip replacement.
Following the hip replacement, dad had “a turn” whereupon a team of doctors went into action, reviving and stabilized him after which he spent a full month of recovery on strong antibiotics. Being confused and demented his recovery became a problem for the staff who were endeavouring to get him back on his feet, but by now he had sadly forgotten how to walk.
However, during this recovery period and in his absence, the nursing home not expecting him to return, had given his bed with another patient. This in-turn required A.C.A.T. to find him another placement which following some delay, meant a different nursing home. This inconvenience necessitated the resubmitting of further paper work, along with the transferring of his bond money.
After settling into his new found second nursing home, his surgical scar began to ooze pus which was diagnosed as a golden staff infection. As we are all aware, once infected by golden staff, it is wise to be ever vigil lest it should recur, which it did.
We feel , with absence of mind and frailty of body and totally dependant requiring high care of the under resourced nursing home, the infection manifested itself because of initial neglect. It was immediately arranged for his G.P. to examine him which resulted in dad again being placed on a further regime of three different types of strong antibiotics that continued for an extended period of time.
The infection continued to reappear when medication ceased.. With his normal G.P away, following seven months infection time, the regular nursing home doctor upon examining him, directed he be readmitted to the community hospital for in-house care. The consulting orthopaedic specialising surgeon, expressed a wish he’d seen him seven months earlier. After consultation it was decided that it was best to re-operate and remove the prosthetic hip joint. After removing the prosthetic which left only skin and muscle joining the leg to his hip and internally cleaning the infected area, a further regime of strong antibiotics was commenced which necessitated a further four weeks in hospital.
Interestingly enough, it belatedly came to our attention that my father by being a gold card holder which entitles him to private cover, resulted in the State government community hospital billing Veteran Affairs for all his prosthetic surgery and subsequent hospital care. Upon his return to the nursing home a mobile medical service, visited daily to intravenously administer his powerful antibiotics. After a week he was taken off injections and placed on oral dosage for a further extended period of time.
With every available bed in all nursing homes occupied by demand outstripping supply, prompts one to take an over the horizon look at what the situation will be in the not too distant future. For example, when the baby boomers, who in many instances are presently playing a caring role with their own parents, start to come on stream.
In speaking to a nursing home person, it was quietly indicated that the nursing home was fast becoming used by the Health Care System as a palliative care institution by virtue of the fact that so many die within six to eight weeks of being admitted.
With the wonderers of modern medicine having run out of miracles for so many irreversible ill and in reflecting upon what could best be described as the dying industry I will continuing with my father’s story.
When visiting, he always had socks on and unknown to us, a small split in the skin had developed on the top of his big toe which we suspect was also initially neglected. This later developed into a small ulcer which required daily dressing, but his toe was turning black and upon regular enquiry, were advised it was, in fact, improving. However behind this lay the seeds of destruction. Upon examination, the doctor found the toe, obviously gangrenous, and made immediate arrangements for dad to be re- hospitalized for treatment. With the Queensland Health System on its knees due to lack of doctors, beds and nursing staff, he was admitted and discharged within eight hours and returned to the nursing home with a script for antibiotics.
In light of this and when considering his predicament, we arranged for him to see a vascular surgeon, the following Wednesday. As a result, it was subsequently revealed that due to the lack of circulation, he had but two options – have the leg off above the knee or settle for palliation to ease his suffering as the gangrene took its toll.
All concerned suggested that amputation was the way to go, as palliation would over-stretch the resources of the nursing home due to the constant dressing, coupled with the fact that the antibiotics would only arrest the spread of the gangrene for a short while. With dad not comprehending the gravity of the situation and in leaving us with limited options, arrangements were made for the amputation to take place within a week
However, two days later on the Friday, dad suffered a stroke and whilst initially considered not serious, later proved an incorrect diagnosis. Around 8pm that night the nursing home phoned to advise that he was dying. In going straight up to see him, it became patiently obvious that his life was now over and in dealing with the reality of the situation it was tacitly agreed by the family that nature should take its course. After an extraordinary long life, this timely event, now eliminated the need for his pending unwanted but necessary surgery.
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Upon engaging the sister-in-charge and doctor and learning of the nature of the expected dying process, I instinctively enquired if anything could be humanly done to elevate the unwanted extended dying ordeal, that would provide a more merciful path to the same end. Predictably enough, I was advised that this was not permissible until such times as politicians enact changes to the existing law.
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As explained and as a shocking revelation, the dying process involved, allowing him to die via starvation and dehydration which can take up to a week in many instances, with morphine to be administered on an as required basis every six hours for any obvious pain.
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To me this became a reality check and with patients like dad and others like him not able to communicate, how does one know if he/she is being given too little or too much morphine, thereby unwittingly aggravating their suffering.
With our humanity turning inhumane, I privately thought that if it were myself lying there dying in this undignified state of unwanted exist, I would want a death equal to that provided by law for of our suffering pets. As a Queenslander, this would place me on equal terms with the Queensland Law that decrees cruelty to animals an indictable offence, thereby attracting a fine of up to $75.000 for allowing a sick animal to knowing suffer.
Confronted by this blatant hypocrisy in this supposed era of liberalized enlightenment, I left the nursing home feeling angry at how this is all our Health and Legal system has to offer by way of merciful respect and compassion to the dying. Along with so many others tragic cases, the aged care health system has, via political apathy failed my father in his time of most need for a desired assisted quick painless death. Its obvious by this political disconnection that the only rights dying people have, is the right to live and the right to suffer and politicians should be pilloried for their in-action.
With what is plainly questionable, but obviously lawfully accepted established practice going on in all Aged Care Institutions, is that the terminally ill are being forced to die in undignified, inhumane circumstances over an unnecessary absurd protracted period of time which is bordering on the macabre, to say the least.
As I later learnt, after being with dad twenty minutes before he expired but with the disturbing spectra of his gasping, laboring breathing whilst drowning in the infected fluid in his own lungs was just too much and I freely admit finding myself having to walk away in disgust. I have heard it said that there is nothing worse than watching a person struggling to live but conversely as I have experienced, it feels as equally upsetting to watch a terminally ill person fighting to die.
Dad was a veteran, from the second world war who fought in the jungles of New Guinea against the advancing Japanese, along side so many who made the supreme sacrifice. In believing that his and the effort of all those around him were to protect our nation and its freedoms, there was a natural, but misguided expectation on his behalf that these freedoms would extend to autonomous end of life decisions and confidentially between patient and doctor, but this unfortunately was not so.
Regarding dads funeral arrangements, it came to pass that even in death when dealing with the funeral people who were well aware of dad’s extended dying ordeal, were well versed in creating a facade that deceptively paved over the imperfections in the system. In being all about how it looks, the funeral people diplomatically suggested that the funeral notice should read “that dad passed away peacefully after a short illness”. Such deceptive wording, in funeral notices, ostensibly hides the reality of so many horrendous deaths from the public at large.
In consideration of the above, it is disappointing to note how our outdated Criminal Code covering the assisted suicide law decrees it murder to compassionately assist somebody suffering with a terminally illness and of sound mind who voluntary requests assistance in their hour of need.
The Encyclopaedia Britannica defines Murder – “as to kill with malice”. However I feel it pertinent to amplify that assisted dying hardly fits this definition as no malice is intended or involved. Sometimes in the public interest, questionable government criteria and regressive oblique laws needs to be challenged and changed, a paradigm of which has been outlined above.
A past article in The Courier Mail dated 2nd June 1993 headed “Live or Let Die” reports how the Voluntary Euthanasia Society of Queensland – (V.E.S.Q.) made a submission to the Q’ld Government of the day for a change to The Criminal Code to decriminalize the “Assisted Suicide Law”. That submission also quoted Justice Michael Kirby as the then Chairman of The Australian Law Reform Commission in 1984 and now a Justice of The High Court of Australia, stated verbatim as follows. “Although terminal patients do not desire death, they are forced to confront it. Accordingly they should be free to choose between a slow debilitating painful death and a quick painless one for which they must look to others to assist them” Contrary to this pragmatic and humane compassionate view, coming from a noted member of the highest judiciary, twenty one years later as the result of paralysed politicians, assisted dying is still a criminal offence and classed as murder, thus still attracting a possible penalty of up to 14 years imprisonment.
I would like to conclude by reflecting on how difficult it is for all of us to enter this world, but it surely does not have be this way when we leave. It should not be a case of when we die but rather how we arrive at that final point and in all too many instances, unnecessary cruel lingering deaths are not heaven sent but man made.
Ron