Month: October 2021

Flight of the butterflies

The first time I saw a butterfly on a door, I had no idea what it meant.

It was not until many years later that I would learn that butterflies are universal symbol in palliative care, and that a butterfly on the door meant that the person inside the room was dying.

The symbolism of butterflies is based on metamorphasis and the process of transformation through the life stages. From the egg comes a caterpillar, the caterpillar becomes a chrysalis, and in the last stage of rebirth the butterfly emerges and flies away ‘reborn’.

Each of these stages signify life, death and resurrection – concepts familiar to christians but which in fact have meaning in many cultures and religions.

In Michoacán, Mexico, the annual migration and return of Monarch butterflies coincides with the celebration of The Day of the Dead (Día de los Muertos) on 2nd November. The Mazahuas indigenous community believe that the butterflies are the souls of their ancestors coming home for their annual visit.

Aristotle gave the butterfly the name psyche, meaning “breathe, breath of life, soul”. Greek people believe that when someone dies, their spirit leaves the body in the form of a butterfly.

The Aztecs believed that the happy dead in the form of beautiful butterflies would visit their relatives to assure them that all was well.

Elizabeth Kubler-Ross, the swiss born psychiatrist who is well known for her theory of the stages of grief, gave the example of a cocoon and butterfly as an analogy for the body and soul.

“Death is simply a shedding of the physical body like the butterfly shedding its cocoon. It is a transition to a higher state of consciousness where you continue to perceive, to understand, to laugh, and to be able to grow.”

Elizabeth kubler-ross

The concept of the death of a loved one is painful and brings with it feelings of grief, loss and finality. Even for those who work in palliative care, death does not always sit comfortably.

We sometimes struggle – not only with bearing witness to suffering, but with finding meaning in the work that we do and ways of coping with our thoughts and feelings. The situations we find ourselves in day in, day out, can lead to vicarious trauma, compassion fatigue and burnout.

Dr Naheed Dosani spoke at the OCEANIC palliative care conference this year about his work providing palliative care to the homeless in Canada. When a homeless person dies, his team shares the experience of grieving in a group by forming a healing circle and using the ‘4Rs’ to remember, reflect, recover and plan to reinvest.

A week later, I heard renal supportive care rural nurses from Broken Hill talking about a wall of butterflies in their office, symbolising the people that their team had cared for who had died.

Both of these resonated deeply for me. I wondered if combining the two concepts could provide a way of helping our team to cope with the sometimes overwhelming nature of our work, and to honour the people we have the privilege of caring for.

We have a large whiteboard in the office, which we use to keep track of patients who are receiving end of life care, and schedule visits or reviews. We now have a number of butterflies fluttering across the whiteboard towards the window. Each represents a person who has died in the past month under the care of the PEACE team.

On the last day of each month, our team will come together in a ‘grief circle’, with the butterflies in the centre. We will take time out of our busy schedules to pause, to remember the person, their story and their family.

We will reflect on their death, share our experiences and what we have learned from them. We will take a deep breath, recover, and prepare to reinvest and continue our work.

Butterfly photo @GettyImages

People, not numbers

18 months.

Watching. Waiting. Planning.

Dreading.

31st December 2019. The World Health Organisation picked up on a media statement by Wuhan Municipal Health Commission reporting cases of ‘viral pneumonia’ with unknown cause. On the 9th January 2020, it was determined that the cause was a ‘novel coronavirus’. The first death occured on 11th January 2020, four days later cases began emerging in other countries with evidence of human transmission.

On the 25th January 2020, the first cases were detected in Victoria and NSW in Australia. On 12 March 2020, just as we were starting to recover from devastating bushfires and hailstorms and having a family gathering to celebrate my daughter’s birthday, the ACT reported the first case of SARS-CoV-2, triggering a public health emergency and initial lockdown. COVID19 became a household word.

The news from overseas during the first wave was frightening. We heard about the increasing number of outbreaks and deaths in long term care homes – our equivalent of residential aged care. Italy’s death toll was one of the most tragic. Aged care homes (nursing homes) were described as ‘beseiged castles‘. In the province of Bergamo, more than 600 nursing home residents, from a total capacity of 6400 beds, died between March 7 and 27, 2020. 

I read the Commonwealth ‘plan’ for preventing COVID19 in aged care. It wasn’t a plan, it was a thread-bare draft document of how to test and then begin to implement infection control precautions. It was woefully lacking in detail. Quite frankly, it sucked.

In March there was an outbreak at Dorothy Henderson Lodge in Sydney. Seventeen residents and five staff had COVID-19 and six residents died. In the ACT we started planning our own strategy to respond to outbreaks of COVID19 in residential aged care, not really knowing what we would be dealing with.

The first wave was quickly contained. The second wave was deadlier and more widespread. In mid 2020, we watched as Melbourne struggled to get control. I listened to the rising numbers of deaths of vulnerable elderly people, feeling helpless and sad for my colleagues on the front line. I helped audit the aged care facilities in Canberra for their readiness to respond to an outbreak. The whole time I was thinking to myself “We are SO not ready, I hope we never have to do this”.

I volunteered to be deployed to Victoria to help in aged care during the peak of the outbreak, but the ACT surge workforce was not requested. I secretly breathed a huge sigh of relief, at the same time feeling guilty about not being on the front line.

A total of 629 people died in residential aged care between the beginning of the pandemic in March and 19 September 2020. To most of Australia, they were numbers – statistics that were read out at daily press conferences. The Royal Commission into Aged Care Quality and Safety extended their work to conduct an investigation.

For the nation, it was a massive failure of the Commonwealth Government to prepare and respond in an area that was purely within their remit, not that of the states and territories. The Commonwealth Minister for Aged Care could not even tell a Senate Estimates Committee how many people had died. For the families of those people, this was a tragedy that was largely preventable. For those working in residential aged care it was a disaster that would cause significant trauma, burnout, and in some cases, end careers.

Totally surrounded by NSW, the ACT has always been under threat of a major COVID19 outbreak. Those of us working in healthcare have been like coiled springs: ready for action, hoping we would never have to face the stark reality, particularly in our disability and aged care homes.

We avoided the second wave, and the third.

This article outlines the chronology of COVID19 in Australia and the lessons learned in NSW. It now seems that the fourth wave has well and truly become the Tsunami threatening to demolish the whole east coast of Australia.

All this time, it feels like I have been holding my breath.

Eight days ago, my worst nightmare began to unfold, with the first positive cases in residential aged care in the ACT. Large numbers of staff were furloughed, outbreak disaster plans that had been 18 months in the making were implemented.

On Monday, three days after the outbreak, I received a frantic call asking me to see a rapidly deteriorating patient, and to supply as many ‘syringe drivers’ as I could. I knew at that point that it was going to be a bad week.

Navigating the infection control precautions to enter the facility, I walked past the ‘outbreak’ zone and headed to one of the ‘green zones’. I stopped to put on my PPE and then entered to see a resident who, although COVID negative, clearly needed end of life care. After doing my assessments and phoning several members of the family I wrote medication orders, documented my notes and started working on letters to support applications for family to travel into the ACT.

On Tuesday, I received my second emergency call to the facility. Another rapid deterioration, a resident who was COVID negative. More phone calls to distressed family members to break bad news, another infusion commenced for end of life care, and more letters to the ACT COVID exemptions team.

On Thursday, I was asked to enter the ‘red zone’ and see my first COVID positive patients. This was a whole new level. I am not ashamed to say that I was apprehensive (read: secretly terrified). I was so grateful for the infection control nurse who watched me don my PPE and checked it was all secure enough for me to enter. I opened the door to the unit, and stepped inside.

Several people asked me the next day what it felt like, coming face to face with COVID19 for the first time. How can I even begin to describe the feelings and emotions? It was totally surreal.

I stood at the side of the bed, watching the person struggle to breathe. I’ve seen that many times before, but the difference this time was that while I was watching and worrying, a little nagging voice in my head was saying ‘don’t get too close, watch out, this is real now – you are at risk here’. I’ve never felt that during my nursing career. I momentarily imagined the deadly little spiky balls of virus floating around the room. Involuntarily, I took a small step back.

I closed my eyes, remembered to breathe, and reminded myself that I was vaccinated, had appropriate protection, and that this was a person who deserved the same care that I had given to all my other patients. More, in fact, because the family would not be able to visit or sit vigil at the bedside. Staff would come and go as quickly as possible to minimise contact time. I stepped forward, assessed, and then rearranged the bedclothes. I spoke gently, reassured, comforted. I hoped my words would be heard, my touch noticed.

I left the room, took off my PPE, and put on a new set to see the next person. He was awake, distressed. This time I didn’t hesitate to step forward and do what I needed to do. I told him I was going to organise for some medicines to make him more comfortable, and that I would be back soon. He looked into my eyes and softly said ‘thank you darling’.

On Friday, the two positive patients I had seen the night before had died. I reviewed six patients – three of these had COVID19. I wrote scripts, spoke with families, documented the notes. I felt totally drained, dehydrated, hungry and tired. I left the facility, took off my mask, and sat in the car for a moment to breathe. Deep grooves were embedded into my face from many hours in PPE.

Before driving away, I found the link to the daily press conference and plugged my phone in so that I could listen to it on the way home. Tears rolled silently down my cheeks when the Chief Minister Andrew Barr announced “The ACT has experienced the toughest day of our pandemic response so far. Two Canberrans with the virus have passed away overnight. They were residents of the Calvary Haydon residential aged care facility, receiving end of life care from the palliative care team“.

For the first time, these were not numbers or statistics to me. They were individual people. I had been beside them, touched them, comforted them, and looked into their eyes. I WAS the palliative care team. Their families were already grieving. Hearts were breaking, mine included.

The worst part is knowing it is not over. The worst may be yet to come.

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