“Why do you ask that?” “Why are you all staring at me?” “What do you want me to say?” “Are you trying to team up against me?” “Are you here to interrogate me?”
He did not know us, did not trust us, he looked at us suspiciously. He had been fobbed off by the other doctors, over months. He had presented to hospital a number of times with back pain but had left each time feeling totally disregarded. Institutional racism and inequity led to unfortunately common inaction. He felt treated as if he was, “a lazy Maori trying to skive off work.” He had always worked hard, his whole life. He was proud of having always supported his family well. Just as he had experienced his entire life, they didn’t try to know him at all and made the usual assumptions. Research tells of differential treatment that is still leading to Maori people in general dying seven years earlier than the rest of Aotearoa/New Zealand’s population.
“Are you going to help me, or are you going to keep blocking me?”
She had spent weeks on our ward with pain in her upper right abdomen. This was caused by metastatic cancer deposits in her liver. Previously the metastases had caused blockage of bile ducts leading to painful jaundice, this had been treated with insertion of drains. She talked with fondness about her children, but when it came to discussing her grandchildren that was when her eyes sparkled. It was good to see her comfortable and talking in a happy fashion. A pleasing contrast to when she had first been admitted, doubled over and grimacing in pain, despite having taken maximal pain relief at home. It had been good to ease her suffering with the care that we provided.
When we met, I had just started my second year of specialist training in Palliative Medicine. I was keen to use my new-found skills and knowledge in the hospice inpatient setting. When I assessed him I was sure that I could successfully treat his pain and that I could decrease his suffering. Management plans swirled in my head and I started to offer him strong analgesics in order to cover his severe pain. I talked to him in an excited manner about Morphine, Oxycodone, Methadone, Gabapentin, Nortriptyline, Fentanyl. He was not interested and would only take Paracetamol. Hmm, maybe we’ll try again tomorrow.
As I start to return to my usual role, I wanted to take some time to reflect on the last couple of weeks and acknowledge and thank the vast number of people in Canterbury DHB who have poured countless hours in to supporting the patients, families and staff of Rosewood Rest Home and Hospital.
I volunteered to be redeployed in the COVID-19 hospital ward at Rosewood. I worked 60 hours over seven shifts as a palliative care clinical nurse specialist.
It is still hard to describe the situation we were faced with. Firstly, we changed into scrubs in the clean area, then got into our personal protective equipment (PPE) in the transition zone (under the watchful eye of our fabulous PPE champions). Then it was brief introductions to those who would be our colleagues for the day (registered nurses, enrolled nurses, student nurses, theatre nurses, paramedics, dental nurses and caregivers, all redeployed from other services) and straight into the ward. From there, it was all hands on deck to keep up with the never ending tasks of caring for elderly, sick and fragile patients, whom you’ve never met before.
Meanwhile your brain clouds over until your lungs adjust to breathing through a mask, becoming increasingly breathless with every shouted conversation to an unidentifiable colleague. Patients’ symptoms would flare up, with little to no predictability or recognised pattern (yet) alongside other underlying health issues presenting their own symptoms. Diarrhoea, back pain, dry cough, delirium, the occasional temperature, lungs filling up fast with thick mucous and decreasing oxygen saturation that betrayed the underlying seriousness of their illness. For some, positioning became a matter of life or death.
Everyone worked tirelessly in the built up heat of PPE to keep up with the heavy nursing tasks required, while still taking time to fuss over the personal touches for each patient, like finding the right station on the radio or singing happy birthday complete with a little cake and candles. Gloved hands struggled to make the touch-screen of the electronic drug chart or smart-phone work, or to type the right letters into patients’ electronic records for the GP to read remotely.
Fortunately, after the initial onset of acute symptoms, most patients appeared largely untroubled by the roller-coaster of symptoms that lingered as days turned into weeks. It seems to be the one positive in all this, on their bad days they would just go quiet, refuse food and fluids, tuck up in bed and sleep peacefully. But this is when we worried about them the most.
The most heart-breaking of all of this though will always be the inability to unite families with their loved ones in their time of need. I cannot imagine the worry and fear this must cause, despite our best efforts to keep in touch by phone or video call. Dying and death are so steeped in our social rituals and traditions. Not being able to be there with them, and not being able to accompany other family members during funerals and the grieving process will, I’m sure, leave many lasting scars. Families just hoped we could get their loved ones through the illness until they were able to be with them again, come what may. We tried, we really did.
Meanwhile, on the other side of the glass door separating us from the outside world, we could see many others working equally as hard. Deliveries arrived; a constant stream of clean linen, more scrubs, boxes of PPE, equipment, food for patients, food for staff, medical supplies, gifts for Rosewood from neighbours and industry colleagues, all of which we were using as fast as they arrived. More staff arrived, ready for induction in to their new roles as receptionists, cleaners, administrators, or to receive training on the use of PPE in preparation for work within the clinical areas. Beyond that, there were security guards who stood alone on the footpath in 10-hour shifts.
Unseen but greatly appreciated, was the Canterbury DHB Emergency Coordination Centre (ECC) team that coordinated us all and devoted themselves to ensuring the smallest details were accounted for. I cannot begin to imagine the mammoth task of staffing and operating an aged care facility in the throes of a pandemic, and all from afar. But what I can say is that I’m deeply grateful to each and every person who sorted their piece of this giant puzzle and kept us all safe. The residents at Rosewood may be elderly with many suffering advanced, long-standing illnesses that render most unable to communicate, but they still delight in their favourite music or their favourite meal. They could still let me know where to stick my thermometer when they were tired of being poked and prodded. They were once soldiers, teachers, mothers and athletes and they still matter deeply to their families, to the Rosewood staff and to those of us who only met them briefly. I will be forever grateful to, and proud of, all those who honoured these people by going above and beyond the call of duty to do everything possible to care for them.
I am also humbled by the continuation of care for those of us who stepped in and out of Rosewood. I received phone calls and multiple emails from ECC staff preparing me as best as possible for the role (although in truth, it was more intense and heart-breaking than I could have possibly imagined), as well as phone calls and emails from occupational health now that I have finished my work there; making sure I am ok and that I am clear about the services available to me and what is required in the weeks ahead as I return to my usual role. Having unrestricted access to a full range of PPE during my work, as well as health assessments and swabs on completion, has been a significant psychological support throughout, and has enabled me to feel confident about my safety at work. One less thing to worry about in this extraordinary set of circumstances. Thank you.
I would also like to acknowledge the often unsung heroes of our health system; the staff working in aged residential care. Without knowing anything about the residents when I arrived, it was still very obvious that these people were not just well cared for, but loved. The little messages left around the place signalling to others that ‘Bob’ likes fruit with his Weet-Bix but ‘Nancy’ hates mushy carrots, the smiling faces in photos on the wall of outings with staff. I know they were deeply distressed by having to leave their patients, heart-sick when hearing from afar about the devastation COVID-19 was wreaking on those they consider family, and completely lost when returning to a workplace so unrecognisable and with many missing faces. For sure we will have put things in all the wrong places and missed filling in a few forms, but we did our best to replicate their love and care of patients in their absence. The smiles from patients on their return told us they were greatly missed though.
No doubt it will take a long time for the Rosewood community to pick up the pieces and move forward. I hope we will all continue to offer them the support and resources they need.
With my most humble gratitude for all the mountains that have been moved by many in recent weeks,
Regional (South Island) Programme Facilitator – Palliative Care South Island Alliance Programme Office
Incubation period (Time from exposure to symptoms developing) = Pre-symptomatic period is average 5-6 days, but could be as long as 14 days (hence self-isolation period of 14 days recommended by MOH)
Pre-symptomatic transmission possible but person would be coughing or sneezing to produce droplets, and contaminating their surface surroundings.
Non-Medical masks (Do It Yourself), e.g. cotton masks, no current evidence to support or not support use. One study of health care workers using cotton masks showed that they were at increased risk of infection compared to those who wore medical masks.
Please join us for another tweetchat on Tuesday 07/04/2020 to discuss palliative care in Australia and New Zealand during the COVID-19 / novel Coronavirus pandemic. Find out from special guests Prof Meera Agar @meera_agar (Board Chair of Palliative Care Australia @Pall_Care_Aus) and A/Prof Leeroy William @drleeroyw (President of the Australian and New Zealand Society of Palliative Medicine @ANZSPM) what has been happening in this space since our last tweetchat – and share your experiences and resources with other palliative care practitioners from across our region!
To join in on the discussion, sign up for or sign into your Twitter account
To find out more about how to participate, check out our guidelines here and here
Topic 1: Social distancing rules (e.g. restricting visitors & limiting funeral gatherings) have changed the way we care for the dying & grieve for the dead. How can we help patients & families to live well, die well, grieve well AND flatten the curve?
Topic 2: Telehealth and working-from-home poses unique challenges to a touchy-feely, team-based specialty like palliative care. Please share a story about how you’ve adapted (or not!) to these evolving work practices.
Topic 3: Meera & Leeroy – can you please give us an update on the work of the Australian COVID-19 Palliative Care Working Group? Does anyone else have any updates / policies / resources that they would like to share?
We hope you can join us for another great discussion!
It’s hard to overstate the impact of the novel Coronavirus on health systems around the world. It’s particularly poignant for palliative care workers, so familiar with dying, to imagine the loss and grief. We try to image what it could be like for health care workers at the front line. Soon we will not have to imagine, as we will be at the front line.
This article, written in 2010 about influenza by Dr Downar and Dr Seccareccia, is prescient.
Twitter as always is an invaluable source of dialogue on this issue. Try out this thread from @AmitAryaMD – you don’t need to be able to use Twitter to read it.
How are your teams and health care service preparing for the pandemic in Australia, New Zealand and elsewhere?
I can tell you, it’s true! Many cancer patients are asking their clinicians for medicinal cannabis – but worryingly, around one in four patients believing it will help in control or cure the cancer, a Victorian study has found.
This study was carried out by a team at the Victorian Comprehensive Cancer Centre and Parkville Integrated Palliative Care Service, lead by Dr Stacey Panozzo, investigated the characteristics and medicinal cannabis requests of 1700 patients with breast, colorectal, melanoma and oesophageal cancer patients attending the three centres over a six month period in 2018-2019.