At the Mercy of Palliative Care

I stood in the elevator waiting for it to reach its destination and reflected on the tumultuous journey leading to my father being admitted to palliative care. Although we all die, the recent weeks brought this reality sharply into focus. Death is everyone’s final destination, but it is almost taboo to discuss. Indeed, most people use the euphemism of “Passing” to refer to death. It is a part of our culture I have always found unusual. “Passing” implies a transient state leading to a destination, but where is the terminus?

The elevator doors slid open to reveal a modern ward setup in user-friendly livery. I was pleasantly surprised to pass a functional lounge room and kitchenette. It was encouraging to see an attempt to humanize the often stark and sterile floors that confront patients in most hospitals. 

I found the room to which my father had been transferred. The attempts to humanize the room were obvious. Sure, it contained a plethora of medical devices, but they were surrounded by a décor more reminiscent of a hotel room with a large flat-screen TV embedded into a wood grain cabinet. After a while, a nurse entered the room to check on him. The nurse, and indeed all staff, appeared friendly and understanding of the purpose of this ward, with one exception, masks.

The justification for masking and PPE provided by nurses was the prevalence of Covid-19, presumably at the behest of a faceless bureaucrat in head office removed from the consequences of their actions. It is difficult to understand the justification for such an edict as both presentations and admissions to hospital were on par with seasonal influenza and below rates in January, according to the June 2024 Australia/NSW Health Respiratory Surveillance Report.

The absurdity of the situation was on display for all to see. This is a palliative care room within a palliative care ward. My father’s prognosis is final. Within a matter of days or weeks, the tumor will strengthen its grip on his internal organs and usher his passing on to the afterlife.

It raises the question of what the priorities should be for someone in palliative care. Our priorities as primary carers are to fulfill my father’s wishes and, in doing so, ensure he is given a dignified, comfortable, and pain-free remaining time on earth. 

Health broadcasts since 2020 had instilled fear into my father. He didn’t need reminding of an existential, omnipresent threat hanging over his life like some Grim Reaper leering over him. Health officials had convinced Dad that he was certain to die if he caught the disease. Their narrative was so powerful that he did not believe his positive test result in 2022. He sat staring at the result for days not being able to reconcile his runny nose with the expectations of a brutal ending to his life. Long after his mild symptoms subsided, the fear remained. He often reminded us to stay safe, not being able to articulate rationally why we were in peril, just that it was “dangerous out there.”

The last thing he needed was a booster dose of fear at this moment in his life.

Late on the night of June 4, after going home from seeing Dad, I received a call from the hospital. A voice on the other end of the phone said my father had an elevated temperature. Elevated? I thought. I was just with him, and I hadn’t noticed anything. The voice continued, “We also tested him for Covid to which he returned positive.” Admittedly I had just woken from my slumber and was still drowsy, but my immediate response was, “Why did you test him?” “I know, I was just following procedure,” was the response.

This episode illustrates the pointlessness of masking for a virus in medical settings. Hospital employees had been masked yet my father caught the thing which he had been told was a death sentence.

He had no detectable symptoms. If he had an elevated temperature, it was so mild that I did not notice it when holding his hand, arm, or patting his forehead. His only injury was a three-day nosebleed caused by the RAT test. This did cause him discomfort and aggravation as he regularly sneezed out the blood clots that had formed. 

But Dad had been judged unworthy to remain Covid-free and his punishment was to be confined to a closed cell with restricted visits from staff who were forced to don a gown, mask, shield, apron, and gloves before prying his door open. The extra time and effort taken away from their tasks must have been significant.

For the sin of testing positive, Dad was to serve his punishment in isolation, in his room which had been transformed into solitary confinement. His door remained sealed to the outside world and timely responses to my father’s hygiene, pain, and health needs had stopped. The predictable result from following orders.

Full PPE created the farcical situation where my partially deaf father could not understand what was being communicated. The nurse would carry out an intricate Kabuki pantomime to communicate with him, but in the absence of clear speech and facial expressions, it was to no avail. His compliant mental state resulted in him nodding his head in agreement to every implied question or gesture. One wonders what he had agreed to when an unmasked individual was not present to provide translation. 

On June 7 I pried open my father’s cell door to be confronted by the smell of excrement. The room was dim and the air stagnant with the windows sealed. I left his cell door partially ajar to encourage airflow. God only knows how long my father had been left in this condition. Within seconds a masked nurse entered resplendent in a plastic armory reminiscent of a Storm Trooper insisting that the tomb must remain sealed. One wonders if the staff member was able to provide care with the same efficiency as executing the draconian orders that the scene could have been avoided and the patient able to remain comfortable and free of the prevailing stench.

After a brief standoff, the nurse agreed to return with help. My patience was tested but I believed extending grace was the right thing to do. Two nurses returned in full PPE gear some thirty minutes later, apologized for the state of the room, and set about rectifying the situation.

On June 10, I unsealed the door of my father’s lodgings to find him in a darkened stagnant room. His frail body had contorted, leaving him slumped sideways with his head twisted facing left and staring at the stark, white, safety rails which constituted the limit of his vision. The lights in his eyes were as dim as the room. The macabre scene was as devoid of humanity as the uncaring concrete walls of his secure cell. God only knows how long he had been left in this position. To add to the tragedy of the scene, my wife and children, who had spent countless hours lovingly looking after my father, had been keen to accompany me on this visit.

Desperate to avert potential trauma, I coaxed my father with low positive tones and helped him right his position. I don’t know how the events impacted my family, but they refused to let the circumstances determine their response. They brought much-needed light to the room, speaking to Dad in positive and encouraging tones. The effect was immediate. His dimmed eyes flickered to life, and his humanity began to return.

On June 13 my father passed away. My brother was by his side when he died. Unlike countless others over the last four years, my father did not die alone but passed away knowing the presence of loved ones. I pay credit for my brother’s loyalty, dedication, and love to ensure in-person contact took place. One wonders how long he would have lied there undiscovered if the circumstances were different. I arrived within the hour. The door was still sealed. I opened it and went in; within seconds a nurse came by and resealed the room. He was dead, they knew it, yet their imperative was to maintain the integrity of his prison cell. There seemed to be no thought about the absurdity of their action, but one wonders why such zeal couldn’t have been channeled into patient care.

Sometime later we received the death certificate. The first cause of death listed was metastatic pancreatic adenocarcinoma, cancer, and the second cause was Covid-19. It must have been an oversight not to include the effects of the RAT test which caused him far more discomfort, agitation, and ill-health. In a final undignified act by Public Health, my father’s dignified life and death were used as a statistic to support a dishonest narrative.

There is little doubt that the way our health systems operate needs a rethink. We invest heavily and expect it to serve us but somehow, we are the ones who have become its servants.