Tag: grief

Maintaining hope

On 4 November 2022

As a specialist nurse who coordinated care for adults with malignant brain tumours for nearly 7 years, I have followed with interest the recent media coverage regarding an infamous neurosurgeon.

My role was in a regional cancer centre, coordinating multidisciplinary team meetings and post-surgical treatments including chemotherapy and radiation. During this time, I saw some of the best and worst outcomes from some of this doctor’s surgeries. From the ‘miracle’ 15-year survivor of glioblastoma multiforme to the devastating outcome from a young mother’s failed surgery (death within days), there is one thing they all had in common.

Hope.

Families will do anything to buy more time with their loved ones. I have seen people take out multiple mortgages on their house, cash in their superannuation and go into debt for hundreds of thousands of dollars to pay for futile surgery.

The thing that was missing for each of these families was an honest and up-front conversation about their quality of life in relation to their diagnosis, treatment options and prognosis. The focus was usually on treatment to cure or prolong life, regardless of the impact. Desperate people will risk everything for that chance.

Even when local specialists were hesitant to refer, people pursued an opinion and opted to have surgery that was not based on evidence and often carried a high financial burden from the self-proclaimed ‘world’s greatest surgeon’.

I tried to be the tempering voice of reason when patients told me they were seeking surgery that local neurosurgeons, in consultation with their peers, had declined to perform. I dutifully forwarded the scans, coordinated the appointments, and in the background I quietly spoke with families to provide as much information as I could and manage their expectations.

I would try to talk to them about what mattered most, about their values and the things that gave their life meaning and were important for the future. Some said that having extra time was more important than anything else. They were willing to take the risk.

I gently tried to remind them that their follow up after surgery would be complicated. Local surgeons absolutely refused to continue care after a patient had been operated on by the ‘maverick’ surgeon. Patients would always need to travel for follow up appointments. Their clinical information would not be available locally if they needed to go to the emergency department or had a crisis here. At best, the referring specialist would get a letter or a discharge summary. I tried to reinforce that whatever time left was precious, and that this could be better spent with families rather than in strange cities and hospitals and travelling backwards and forwards for appointments.

Inside I was screaming. So often I wanted to refer to palliative care so that a detailed conversation about what to expect and their wishes for the future could take place and help with the decision making process. This was sometimes blocked by doctors with the phrase ‘you can’t take away their hope’. After gaining consent from the patient, I would make the referral anyway. People that met with palliative care first sometimes changed their mind about the surgery and shifted their focus to making the most of the present with good supportive care and symptom management, instead of clinging to an uncertain future.

I know there are success stories. These are the ones you see at fundraisers and in the media. But for every success story, there are countless failures. People who died, or lost function and the ability to even communicate with their family, only to eventually die anyway.

Surgeons who promise the world without inviting palliative care clinicians to be part of the multidisciplinary team should immediately raise a red flag and be consulted with caution. Hope is important and should be nurtured, but the truth needs to be told and expectations managed. Treatment should be based on best evidence and consensus of peers. There is no room for ego when someone’s quality of life is at stake.

The recent media coverage has not only shone a light on these terrible personal tragedies, it has highlighted a much broader issue than individual surgeons and poor patient outcomes. This issue is the ability for people diagnosed with a life limiting cancer or chronic illness to access palliative care from the time of diagnosis. Currently, many Australians are unable to access high-quality palliative care where and when they need it. This is especially difficult in rural and remote Australia and for people from diverse needs groups, including Aboriginal and Torres Strait Islander Communities.

Increased funding for specialist palliative care services is essential. Palliative care should be available at the outset, embedded within all multidisciplinary teams, and included as standard care – not a last resort when everything else fails.

Flight of the butterflies

By Unravelled

On 8 October 2021

In Reflections

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

By Unravelled

On 2 October 2021

In Reflections

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.

Bone tired

By Unravelled

On 30 July 2021

In Reflections

I’ve never really thought of myself as being on the frontline during the pandemic.

I haven’t been exposed to COVID-19, or cared for anyone with it.

Sure, the PPE requirements have been a nuisance working in aged care facilities, and wearing a mask all day feels like hard work. But it’s nothing compared to what I imagine my colleagues interstate and overseas have endured working in hospital COVID wards and care homes where there are outbreaks.

I’ve worked alongside nurses who are run ragged caring for the elderly, watching them patiently explaining to angry relatives the reasons for visiting restrictions, while at home in their own countries their family and friends have been dying of COVID. I have listed to their grief as they tell me about not being able to say goodbye to mothers, fathers, siblings and cousins.

I have used telehealth to connect families overseas and interstate with their dying loved ones, giving them that last chance to say goodbye, because travel restrictions mean they cannot come to sit at the bedside and hold the hand of those they love. I’ve lost count of the letters I have written to Chief Health Officers on behalf of these people to support their applications to travel to attend a funeral.

I’m tired. Everyone at work is tired. Not just because we work long hours, or because we are understaffed while the workload increases, but because the permanent state of vigilance is exhausting. Every radio station, television channel, newspaper and social media forum is filled with COVID news – we can’t escape it. We have not been able to have holidays – those precious days and weeks each year in which we can take ourselves off to explore other places, turn our faces to the sun, unwind and relax to recharge our body, mind and spirit.

Caring for the dying is difficult at the best of times, but during a pandemic there are layers upon layers of complexity that we peel back one at a time, only to reveal more layers underneath. We bear witness to grief, we hold space for others, it is accumulative and eventually catches up with us.

I have cried more in the last six months than in all my years of nursing. Advertisements on tv can bring me to tears, they randomly run down my cheeks when I’m listening to a song, watching a movie, or reading a book. The sadness comes out of the blue, overwhelms me, then disappears. I’m not burnt out – I still want to go to work, I love my job. But I’m tired – ‘bone tired’, as my grandmother used to say.

Just today, I read an article about the grief that nurses are experiencing during the pandemic, and the potential impact of this on the nursing workforce in the years to come. I know many who have left their jobs, moved to different areas, or decided it’s finally time to retire. It’s difficult to imagine the pandemic coming to an end, and that we will ever return to what we once knew as ‘normal’ life and work.

To my nursing, medical and allied healthcare colleagues on the front line in COVID hotspots, hang in there. Take a mental health day, or two. Stay safe.

The year of change

By Unravelled

On 1 January 2021

In Reflections

It ended as it began, with a sense of uncertainty, a feeling of danger just around the corner, and an urgent desire to step into self-protect mode.

2020 was the International Year of the Nurse and Midwife, but will no doubt be written into the history books as a year that everyone wished they could forget. It was the year of disaster – unpleasant surprises, unwanted lifestyle changes, the year of grief and loss, and of one bad news story after another.

In our family, it started with the bushfire season which was one of Australia’s worst ever. RFS firefighting deployments began in late August, and it was a long, hot summer of pager calls, long days and nights, and waiting for the next assignment. I spent a night in December waiting for the dreaded knock on my door after receiving a text from my husband with a photo of the Nerriga firestorm, and a message saying his crew were preparing for a burnover. For hours on end I waited for some news, truly believing that this time he wasn’t coming home. His phone was either out of range, or no longer useable. I was so relieved when he returned the next day, covered in soot, ash and that unmistakeable smell of bushfire smoke. We had no idea that things would get much worse before they would get better.

New Year’s Eve was a warm summer evening that developed into a thick, choking smoky night. My parents were in danger on the south coast, and my husband was out on fire duty, while I tried hard to remain calm and checked my phone for news every five minutes. The firefighting continued for many weeks, I put on my RFS uniform and helped with shifts of community liaison and supporting our crews at the shed. We watched the country burn, and listened to stories of family and friends that lost properties and livestock. The rain finally came in late February, and finally we thought there was a chance to rest and recover.

In March COVID-19 reared it’s ugly head, and the downhill slide into 2020 continued. At work our team rapidly pivoted, adopted telehealth, packed kits of PPE and changed from everyday workwear into scrubs. We worked from home when we could, but there was no doubt our clinical work was going to increase rather than slow down. We planned how to decontaminate after each shift to protect our homes and those we loved. In addition to my clinical workload, there were now multiple COVID-19 committees with meeting after meeting on WebEX, Zoom, Teams. We knew we were in for the long haul. I was exhausted before we began.

July and August were bleak. It was cold, dark and miserable. We shed tears for two very special people in our lives. Uncle was in his late 90’s, and was tired. We were sad, but not surprised when he decided it was time to stop taking the medicines that kept him alive but were failing to improve the quality of each day. Rhonda’s death came as a total shock, and we grieved this very sudden loss hard. She was my second mother, my lifeline when the children were small and I was navigating new marriage and motherhood, and one of my best friends as I grew into adulthood. She was the person who was always there to help out, the reliable person in a crisis, the one you thought would always be there to make a cup of tea and have a chat. She was at every birthday, every special occassion, every Christmas. Life goes on, but we are changed irrevocably.

Both my parents had bilateral knee replacements in 2020, Mum in February and Dad in November. Both had complications with blood clots, and delayed recovery. Usually active, busy and energetic, they have been forced to slow down and are struggling a little. It comes as a shock when you realise your parents are entering old age and you are reminded that they won’t be here forever.

During the year I sat with so many people who were facing loss and grief. I held the hands of the dying and listened to their stories. Every day there was something new to learn, a different challenge to face. While the world seemed to come to a standstill with lockdowns, COVID-19 and a sense of continuously waiting for the next outbreak, care of the dying continued and was made much more difficult by having to navigate border and travel exemptions and visiting restrictions.

I sought comfort in my family, my home, Molly the Wonderdog, and Wonkykitty. My grandchildren reminded me that new life and new energy are always just around the corner when you think things are at their worst. I learned to bake sourdough. I relearned crochet, and used it to relax at night and to keep me awake while watching Netflix. It gave me a sense of purpose, as each item I made was being gifted to someone I loved. It forced me to slow down, to sit, to temporarily lose myself in colour, texture, patterns. It grounded me.

2020 ended with a whooshing in my ears and dangerously high blood pressure that involved an emergency visit to a doctor, tests and medicine. This time I was frightened for myself. It was a wake up call that I need to focus on self-care. My resolution for 2021 is to excercise, eat well and slow down enough to take time to spend with family and friends, to smell the roses, to bake more sourdough, and keep crocheting. It’s time to enjoy the simple things in life.