Eve Hillary author of Sarah's Last wish has paired her book with mine which is just wonderful of her - so I don't just have my website www.withoutduecare.com but also features on hers. At the book launch in September she gave a brilliant and understanding speech which she has reproduced on her site - its the tab "Speech by Eve hillary" and can be read there but will reproduce it below - in the last half she offers an insightful explanation of why the Hospitals are in such a mess -along with underfunding and attitude problems.
I will be seeing Melissa and Chris this week and then my youngest and her husband. So away for about 10 days. Hope all are well in the in between. Hoping and praying also that the docs can restore some of Chris' sight which was lost at the same time as his leg was taken... I feel positive - he needs that sight to improve
Therese Mackay's 'Without Due Care' a book launch speech at NSW Parliament
by Eve Hillary
Speech by Eve Hillary
In the free and prosperous 1970’s Donald and Therese Mackay lived as a typical Aussie couple. They rented a pretty cottage for $12 a week where they raised their two daughters, Alison and Melissa in the sleepy NSW town of Port Macquarie. Even then, Don and Therese cared about people. Their tireless community work clearly showed their humanitarian values.
‘Then one sunny day in January 1982’ - Therese writes in her book - ‘life changed’. Don broke his neck at work and became a quadriplegic. The public hospital system of the 1980’s gave him emergency care and rehabilitation. When he returned home, Therese became Don’s full time carer. Despite his severe disability Don overcame all obstacles and resumed his role as husband and father. Therese remained a devoted wife and incredibly, together they continued giving to their community. They supported social justice and access to good health care for all Australians.
In 2007, after a lifetime of social contributions, it was Don who needed help from the health care system. For 25 years, with Therese’s help, he had maintained his health and stamina despite the daunting challenges of his quadriplegia, but now fluid was slowly accumulating in his lung and it had to be drained. Medically it was a simple problem to fix, and people didn’t normally die from it. But the health care system that had treated Don so adequately for a broken neck 25 years earlier had disappeared and in its place a newly ‘reformed’ health system had emerged by 2007 which Don and Therese found unrecognizable, strange and frightening. This time a robust ginger haired Don wheeled his chair into an understaffed hospital with peeling paint and dirt encrusted floors. Instead of a simple low risk drainage procedure, doctors chose a high risk option not suitable for a quadriplegic. For the next five weeks Don suffered nightmarish complications and was reduced to a wretched state of being fully conscious but unable to breathe without a respirator. After five torturous weeks, doctors decided to withdraw Don’s ‘treatment’. This meant sending him home and without any further ado, taking him off the ventilator. Both Don and Therese knew this was a death sentence and Therese begged doctors to allow Don to have a home ventilator at least for a while longer but this was denied - the air ambulance officers were instructed to remove Don from the $500 machine that was the size of a breadbox, his only connection to life. The macabre medical arrangement was executed exactly as planned. On 17 May 2007 Don was transported back to his home in Port Macquarie, fully alert. He believed that his life no longer mattered to the health care system, and that health professionals had made the decision to ‘terminate’ his life. Those were the terms he was forced to accept if he was to be allowed to go home - and he desperately wanted to go home after what he had endured at the hospital. It wasn’t the way he had wanted to die and Therese had tried everything humanly possible to avoid such a terrible death for Don. For emotionally normal people it is agonizing even to imagine what Don’s last thoughts might have been when the ambulance officers removed from him the machine that helped him to breathe. After the medics left with the machine, Don lived for several hours longer, surrounded by Therese and his two daughters. Don was fully conscious and mentally sharp and his heart was still strong until the very end when he simply couldn’t manage another breath for himself.
Two months ago, Therese Mackay generously sent me her manuscript to preview. After reading ‘Without Due Care’, I cried for Therese and for her two daughters and I mourned for Don. After that, I wept again, this time for the hospital where I had once worked for over a decade. I had walked those corridors, worked in those intensive care units where Don had spent his final weeks - but had done so years before the ‘health care reforms’.
In 1987 I was a proud member of an intensive care health team in a public hospital with an international reputation for excellence. We attracted the best clinicians, VMOs and nursing staff in the country. We were affiliated with a top Sydney University, conducted world class research and ground breaking surgery. We pioneered transplantation and I was proud to be a part of medical technologies that helped people and saved lives. Yes, we had dying patients - most were unconscious, but we strove to give them as much comfort and dignity as possible. In my 35 years in high level health care, we had never withdrawn a ventilator from a patient who was not irreversibly brain dead, and I had never heard of a conscious patient having their ventilator turned off and be left to die because a system had deemed it. So, what happened?
I began my health care career in 1969 when the hospital system was not-for-profit and operated to serve the needs of the community. As a professional, I had an ethical code and my hospital’s regulations to live up to, but most of all I was there to serve the patient’s needs. I never considered my role as making money for a corporation.
Changes to the system began in the 1988 when the NSW Government awarded private health corporations lucrative contracts to build private hospitals on sites already occupied by public hospitals - called co-location. The corporations persuaded certain government ministers that their proposed private hospitals would take the pressure off the public system and save taxpayers money. Instead, it cost taxpayers even more, as private companies tapped a rich vein of public money through PPP’s (private public partnerships). Throughout the 1990’s the government bestowed contracts onto corporations like confetti until the NSW Auditor-General, Mr Tony Harris warned that public servants should not enter into grossly disadvantageous [to the taxpayer] deals with the private sector and that, ‘the Government is, in effect, paying for the hospital twice and giving it away [to the corporations].’ Dr Refshauge the NSW Minister for Health agreed. ‘We are not going to privatize hospitals. We believe that the public sector is important and should not be flogged off,’ he said in the NSW Parliament in 1997. The Parliamentary Member for the South Coast, John Hatton argued that deals should be transparent and revealed to the public, which has a right to know. Ironically, Donald Mackay, also spoke out against hospital privatization and joined in a campaign to return the privatized Port Macquarie Hospital back to the people of NSW. But overall, the deals continued and so-called hospital ‘reforms’ were fuelled by special interests and doctor advocates who spoke out in favour of the corporations.
I recall when the first spade of earth was turned on my hospital campus. With massive injections of millions of NSW taxpayer dollars, a health corporation built a luxurious marble and glass private hospital over the old car-park site adjacent to the public hospital. The citadel was obscured from view behind the public hospital building and nestled into a manicured enclave. By 1998 it opened to service the wealthy and well insured of Sydney’s North Shore. The health corporation ran its private hospital as a business; but with even more taxpayer funding and bequests from wealthy socialites , the corporation’s share price quintupled and investors were paid healthy dividends. With the global private sector takeover of the once public hospital systems in western countries came a new philosophy which was noted by several worried health professionals at the time. The New England Journal of Medicine (August 5, 1999) stated: ‘Our main objection to investor-owned care is not that it wastes taxpayers' money, nor even that it causes modest decrements in quality. The most serious problem with such care is that it embodies a new value system that severs the communal roots and Samaritan traditions of hospitals, makes doctors and nurses the instruments of investors, and views patients as commodities’.
By 1999 my public teaching hospital, which had loyally served the northern Sydney public since 1885, had become orphaned in its own home by the co-located intruder. As in twin transfusion syndrome when twins share the same placenta unequally, the private hospital twin received all the life blood while the anaemic public twin was barely able to stay alive. As conditions deteriorated alarmingly in the public hospital, top medical and nursing staff left in droves resulting in a permanent staff shortage, the building fell into disrepair, the top storeys were water damaged from a leaky roof, the floors were dirt encrusted, the windows grimy, the toilets disgraceful and the medical equipment had deteriorated and become hopelessly outdated. By 2005, the once world renown public hospital resembled a third world setup. Even I left the hospital after seeing where it was headed. The health system had adopted a chilling model of economic rationalism that was well beyond any one person’s ability to fix. I desperately hoped that the monstrous system that had destroyed this Australian icon would not one day claim the lives of innocent people. It would be only a few short years before my worst fears came true.
It was into this health system and into this public hospital that Donald Mackay was admitted on April 11, 2007. He required thoughtful medical assessment, adequate nursing care and a safe and simple procedure to be performed in a hygienic environment. He required his basic, human needs to be met. Once, all Australian public hospitals were up to this standard of care. But Don got none of these. The system that had destroyed this once top public hospital would also come to destroy Donald, the man who cared for people. Then it would continue to destroy lives until it became the subject of a Parliamentary enquiry in 2007. Since then, not much has changed systemically.
Honoured guests, I give you Therese Mackay’s book: Without Due Care. She writes on behalf of Don, her family and for all of us. Please read it. We need to know what kind of health system we have, and how it came to be what it is. We need to know how our Parliamentarians voted on health issues, who the special interests are and whether they have the public interest at heart. Why? Because this could happen to you or your family. Instead, this must never happen again. Please give your support to those candidates and others who genuinely strive to improve the system and work in the public interest.
Journalist, Health professional
Author of Sarah’s Last Wish: a chilling glimpse into forced medicine