by Therese Mackay
Published by Therese Mackay, 2010
Paperback, 187 pages
$27.95 plus $6 p&p within Australia
PO Box 248
A tribute to a kind and courageous man who was a loving husband and father.
A lament for a true love whose life ended too early and in tragic circumstances.
A searing indictment of incompetent and uncaring treatment in the New South Wales public health system.
This book by Therese Mackay is all these things. It documents the series of catastrophic errors and casual cruelties that led to the untimely death of Donald Mackay, her husband of thirty-five years.
Donald (or Don as Therese calls him) was not a well man when he was airlifted to Sydney Hospital in April 2007 so that he could have some fluid drained from his lung. At the time he was suffering from a pleural effusion of unknown cause, which was impairing his breathing. Having some fluid withdrawn from the lung would not only allow him to breathe more easily, but a sample could also be sent for analysis, in the hope that a cause for the effusion could be identified.
Complicating Don’s condition was the fact that he had been a tetraplegic for twenty-five years, having suffered a spinal fracture in a diving accident. Don’s tetraplegia meant that he had diminished lung capacity at the best of times. His body had also become prematurely aged, he had severe osteoporosis and “bones as fragile as eggshells”. The bone degeneration meant that he suffered from severe chronic pain which meant he needed to take opiate painkillers. (Contrary to commonly held misconcepttions, people with spinal injury do not lose all nerve function and some tetraplegics have to deal with awful pain as well as their physical disability.)
Unfortunately, Don’s medical problems prior to his hospital admission were nothing compared to the medical problems caused by his hospital treatment.
Unbeknownst to Don and Therese, a medical special who had never met or spoken to either of them had recommended that Don undergo a procedure called pleurodesis which basically involves inserting talc between the two layers of the pleura to gum them together and prevent pleural effusion. In a rushed admission interview with an admitting specialist whose spoken English was so poor as to be unintelligible, Don signed a consent for, for this procedure. (Therese was not present at this interview as she was still driving to the hospital from their home in rural New South Wales.)
When asked (during the course of a hospital enquiry into Don’s death) this admitting specialist was unable to recall what he had told Don about pleurodesis.
Therese is convinced that Don was not told what the procedure involved or its possible adverse effects. Had Don been properly informed, Therese asserts, he would never have agreed to the procedure since he had a mortal (and rightly so, as it turned out) fear of surgery.
However, by the time that Therese arrived at the hospital, Don had already underdone the pleurodesis.
This unnecessary operation – performed in indecent haste and without due diligence – ultimately led to Don’s untimely death. The problems with the surgery were compounded by the use of ungraded talc in the procedure (despite the fact that this was known to be more risky) and the post operative suctioning of Don’s lungs with the suctioning device mistakenly set on ten times the normal pressure.
Therese and her family were not informed at the time about the suctioning error, and only later found out about it through their own efforts.
Don developed ARDS (adult respiratory distress syndrome) a known risk of pleurodesis. Don’s daughter Alison read up on ARDS online and discovered that it can be treated with cortisone. However, doctors at the hospital refused to try using cortisone to reduce the inflammation. Numerous requests for Don to be administered intravenous vitamin C were also refused.
– days after the pleurodesis, Don developed unmistakable signs of respiratory failure and was admitted to the ICU and put on a ventilator. The tube in his moth prevented him from being able to speak – and given that he had very limited use of his hands, he was not able to write, making it almost impossible to communicate his needs to medical or nursing staff.
Fluctuations in Don’s oxygen/carbon dioxide levels and changes to his medications meant that his mental state deteriorated and he experienced episodes of distressing hallucinations, while Therese and other family members kept vigil at his bedside, helpless to do anything to relieve his suffering.
Some weeks into his stay in ICU, a tracheotomy tube was inserted into Don’s neck. It was hoped that this would allow him to be able to speak again. However by this time, he was extremely debilitated having developed not only a klebsiella infection, but MRSA as well. (Therese was not informed when he developed these infections and only found out when she expressed alarm at the colour and consistency of secretions being suctioned out of Don’s lungs.) Don was also suffering from candidiasis of the intestinal tract due to the antibiotics. (The hospital doctors had refused to allow the administration of high potency probiotics that could have helped keep the candida under control.)
Attempts were made to wean Don off the ventilator, but it became clear that the damage done to Don’s lungs by the surgery, the excessive suction and his hospital-acquired infections was just too severe, and he was not going to be able to survive without a ventilator. Accordingly, Don’s care was transfered to the hospice team and arrangements were made to send him home to die. It says a lot about the treatment that he received in ICU in Sydney Hospital that Don was happy and relieved at this turn of events:
“That day an ICU doctor, the ICU Social Worker and Don’s nurse met with me to say that Don was dying and treatment was just prolonging this. I had known this anyway but thought to try and get something for Don out of this by asking that all effort be made to get him home to die. I explained to the doctor that any decision about Don was to be made by Don, and Don alone, and that she should talk with him. This doctor’s notes record that when she explained this reality to him ‘he looked at me as if to say “It took you that long to notice?” and he expressed excitement about being able to go home to die.’ Finally after give long, painful and brutal weeks someone acutally looked at him. Looked at him and understood. Now he was officially dying, his wishes became important.
“So now, after all these weeks of suffering, all Don’s treatments apart from pain relief, antibiotics and fluids were stopped and Don became almost immediately lucid and clam. How do they explain this to me?”
Therese’s sister Veronica recalls the same conversation:
“…I returned to the hospital in his last week. The social worker was gleefully telling us that Don could go home the next day with a respirator. Great! I thought. But I hadn’t been told the rest – that then the respirator was to be taken away! This was delivered in the same tone. How lucky he was! The hospital sets him up to die with tortures beforehand but they will grant him his wish. What else could he choose but to die within a few hours of getting home? Lucky man!”
Therese recounts some shocking instances in which her husband received completely substandard treatment in hospital, including one occasion in which a nurse who had been suctioning Don’s secretions dropped part of the apparatus on the floor and simply picked it up and replaced it on Don’s mouth.
Therese also observed that despite Don’s deteriorating condition, he did his best to cooperate with some nurses but positively flinched from others. One nurse spoke to Don in Therese’s presence “in what I can only describe as a nasty fashion, which he was very aware of. Over-explaining, over-loud, right into his face, ad nauseum, as to why she couldn’t do certain things as if he was retarded or brain damaged.”
On another occasion, Therese overheard a nurse imitating the speech of a young woman who was brain damaged as a result of an accident. She and her colleagues were laughing about this patient not only within earshot of Therese, but also the young woman herself.
Therese and Melissa also witnessed a young man attempt to escape from ICU only to be captured by security guards and returned to his room. He spent the next two weeks tied to his bed.
Recalling instances like these, Therese writes:
“They could do what they liked to him and us, but were we to do anything it was duly noticed with meticulous precision. So now I am noting down some of their failures and abuses, for the record. I’ll never know what was done to him when I was not there. Maybe that’s a good thing.”
Don also had his arms restrained during much of his time in ICU, as he was frequently agitated and kept pulling on his tubes.
“I knew his agitation had many causes. A lot of it was just uncontrollable movements, and he was on so many drugs often he was not truly with it, although he understood me and we had a lot of eye contact. but I also know that he wanted those tubes out. He knew the consequences of this was death – full stop. He had asked me some months before that if ever he was unconscious and on a ventilator, i was to make sure he was taken off, no quadriplegic was going to survive the massive damage done to Don’s lungs and he knew it. I knew it. The staff knew it too. I am stumped as to why they would not admit. Don was never going to recover from the massive damage Pleurodesis did to his lungs. I know; not believe, know [italic] – he knew that and that he had made his decision and wanted out.”
Once Don bit through his ventilator and said to Therese and Melissa:
“‘Help me’. It was one of the very last times we were to hear his voice unimpeded by tubes. We looked at each other and then the alarm went off and Melissa and I were bundled out. Don wanted us to help him die. That was his choice. I don’t know why we didn’t press this at the time but both of us were emotionally pushed about. We were outside in the corridor for some time and I can see my lovely daughter’s distraught face before me as I write this. Melissa and I still have nightmares about this event.”
Therese also adds:
“As painful as it is to express this thoughts, I felt from the early days in ICU that don should have been allowed to die without prolonging his suffering. I was in the awful situation of loving him deeply, of maybe holding out a small sliver of hope that the doctors might be able to fix up the damage they’d done, but knowing in my heart it was only a matter of time and he would not survive…It disturbs me to think that I failed him in his wishes. If he had not been so disabled, I would have had no qualms about asking that his wishes concerning ventilation be respected. As it was though, I could not even ask. Were I to suggest, talking with ICU doctors in the early day about taking the ventilator away, there would have been suspicion of my motives. When someone is disabled, most people just assume – there’s that word ‘assume’ again – that it’s all suffering. But life is as rich as you allow it to be and ours was very rich.”
While he was in the ICU Don participated (if that is the right word for it, given his rapid physical and mental decline) in a study of different techniques of managing critically ill patients’ blood sugar levels.
“On the first day Don was in Intensive Care this research was pushed to us with the qualifier that taking part meant only miniscule amounts of blood would be taken, but as this would be getting tested more regularly than normal, this would give Don a better chance of survival…Don was given many bags of blood over the time in ICU because his haemoglobin levels were dropping. He had ten bags of blood over the last two weeks alone, always in an amount of two bags per transfusion. It was never explained why he would need this much and I would dearly like to know why…I would also like to know why, if Don’s haemoglobin levels were so very low, and knowing how sick he was, why some days they did full blood tests eight, ten, twelve times a day? There was no way his poor sick body would have been able to make up all that blood. What in blood hell was being done to him?
“My family’s belief is that Don was kept alive long after there was any possibility of recovery for just one reason – medial research. That’s why his suffering was a breach of human rights.”
Following Don’s death, Therese began a quest for answers about why her beloved husband had been treated so badly in the public hospital system. Her efforts were largely frustrated and frustrating. The Health Care Complaints Commission (HCCC) stated that the care that Don received was “acceptable” and did not recommend disciplinary action about any of the health professionals involved.
The Coroner’s office changed the cause of death on Don’s death certificate to include the fact that treatment of the pleural effusion was a causative factor. However, after receiving a report from a cardiothoracic surgeon of questionable competence, the Coroner’s office declined to reopen the case.
“Not only does the system not work, the fact is that there is no system which fairly investigates medical negligence. It is all a construct which appears to work, until you try to get through the maze thrown up by the bureaucrats and politicians which protects hospitals, doctors and medical staff, and actively works against the interests of the people injured and killed inside our medical system.”
Despite the pathetic response by the HCCC and the Coroner’s office decision not to investigate, therese has done he utmost to get justice for Don – and alert other people to the dangers they face in the hospital system. She has organised a petition, given evidence before the Garling Enquiry into Acute Care in NSW Public Hospitals and availed herself of all opportunities she has had to get the message out through the mainstream media. She has also written and published this very creditable and moving book. To conclude in Therese’s own words:
“I should not have to be chasing justice on behalf of my dead husband, daughters and myself. Those responsible should be subjected to disciplinary action for the death and suffering of my husband Don Mackay and robbing our daughter of their wonderful Dad. Those most responsible should not be still practising inside the Sydney hospital, It would be better for NSW residents if they were no in the health system at all. How do I feel now as I come to the ned of this? I feel empty and hollow but I feel a righteous anger. This book is my final attempt to expose what was done to Don, and make those responsible answerable.
So now, my lovely man, I gather up the cards, as you would have done, and throw them high in the air behind me, never looking back and ‘let the devil take the hindmost’. I will go forward, still grieving terribly but full of hope for our daughters and grandchildren who will carry the spark I held so dear. I have done my best, Don. I have left no stone unturned. I have loved you forever and will always do so, and nothing mankind can inflict can take that away. The late winter sun is going softly down behind those trees you loved to lie out under. There is a chill in the air. It’s a gentle time of the year and not long now till the spring comes.”