Short notes and the colours of dying

“DID anyone die at work today Mum?” our 7-year-old asked.

“Yes. One person today,” I replied truthfully.

“What colour is death?” he enquired.

“What colour do you think it is?” I questioned back.

“Maybe it’s black, because there is nothing after you die, or maybe it’s red, like the devil,” he offered.

“Maybe. Sounds a bit dark and scary. Or maybe death is colourful, like a rainbow lorikeet?” I suggested.

“Oh. Yes, maybe it’s the colours of the bird you might turn into, when you die. Or maybe it’s golden, like a lion. Maybe I will become a lion. Or maybe it’s blue, like the sky you float up to.”

He shrugged and departed the deliberations.

These are short notes about small conversations and small things.

Small things, just like a cup of coffee, pictures of flowers, animals, and landscapes, or a few drops of perfume. Very small things indeed, so derisory that they rarely dare to appear in reports, accounts, and media articles … Yet, such small things sometimes represent a substantial part, and perhaps, a most meaningful one …

Paul Bouvier, Humanitarian care and small things in dehumanised places

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I first saw a dead person at the age of 18 on my first night shift as a carer at a Catholic nursing home. I found the woman, soon after she had stopped calling out for her deceased mother and rocking her dilapidated doll. She was waxen and lukewarm, glassy staring. I was frightened and fled to alert the Sisters.

Mother Superior certified the death, and sensing my juvenile panic, collected my hand, and led me right back into the room where the shadows of death skulked. I wish I could thank her now:

We filled a bowl with warm, soapy water. We undressed the woman, washed her, and put on a clean nightgown. We brushed her white, thinned hair and laid the shabby doll beside her. We positioned the bedclothes as if tenderly tucking a child into their cot. She was ready for her family. My fear was gone. It was simple, yet deeply affecting. Most of all, it was beautiful.

I drove home at the end of my shift that morning as daylight was breaking. Everything around me felt alive with vibrant green, icy chill, and melodic birdlife.

Rachel Coghlan, Our local funeral parlour: when development threatened a marker of place and community

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Medical notes: Referral to physiotherapy for mobility review

My high school principal died on our palliative care ward. I hadn’t seen her since about the time I faced the dead person at 18, when I farewelled high school to start a physiotherapy degree. Under the tall pin oaks and claret ashes of the school forecourt, we said goodbye to our school and our teacher. She was a graceful, composed and tranquil guide through our tumultuous years of metamorphosing from little girls, to hormonal girls, to bosomed young ladies.

She was dying when I next saw her, 25 years later.

I was her palliative care physiotherapist, trained in wheelchairs and mobility aids and falls risk assessments, and non-pharmacological pain management, exercise prescription and helping people to maximise quality of life, to stay independent, and to live with dignity. I assessed whether she could still walk, advised the nurses on safe “manual handling”, and wrote my recommendations on the white board in her room and on the nursing handover notes.

Physiotherapy notes: ambulates with 4-wheel frame x 2 assist; high falls risk; falls alarm mat provided

The colour was red, for falls risk, and white, for clinical.

She remembered me, gave a feeble, heartfelt smile. We walked together, just a little way on the 4-wheel-frame I prescribed, and chatted. I told her about that time she wouldn’t let us order scarlet satin boxer shorts with printed school emblem for the final-year girls, when in the mid-1990s satin boxer shorts were all the rage. It was far too risqué for a Catholic girl’s school. She giggled loudly.

“That sounds about right.”

Over days, her legs gave way to metastasising disease, her mind became too agitated to tell her legs what to do, and I updated the notes.

Physiotherapy notes: rest in bed; full nursing care

In high school years, she encouraged us to embrace challenges, be bold, be adventurous. Her colour was rose-hued of the delicate silk pyjamas and blanket her devoted children wrapped around, her skin buttery serene, just as I remembered her, now made smoother by disease. She had a warm, motherly scent.

She started to speak only Russian. I never knew she was Russian. She listened to Phantom of the Opera and coasted in and out of delirium with a syringe driver full of carefully calculated morphine and haloperidol, with her family close and surrounded by garden pink. I thanked her, while I stroked her arm, and wiped her lips, and whispered goodbye.

Physiotherapy notes: nil further physiotherapy goals

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Our palliative care ward is austere, an old surgical hospital built in the early 1970s and not updated since. Some of the windows don’t open, many boast a view to the concreted staff car park, and the shower grouting and toilet bowls are long stained with overuse and infirmity. The beach is less than one kilometre away. Like Albert Camus’ town of Oran,

It is situated in an unrivalled countryside … at the edge of a perfectly formed bay. One can only regret that it was built with its back turned to the bay and that, as a result, it is impossible to see the sea.

Albert Camus, The plague

We face the suburban railway line.

Now we have our own plague, like Oran. In COVID-19 times, group sessions for exercise, art and singing are suspended by public health measures. The therapy pets for small cheers through long, bleak days are with their owners at home. There is the physical absence of usual gatherings of family members and blessings brought by final kisses on foreheads from coy children and babies, the natural reminders of life’s continuum and unique memoirs of every patient.

A sick person can be very lonely here through pandemic days.

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Nursing notes: referral to physiotherapy for respiratory assessment

A man with motor neuron disease was admitted with breathing difficulties. He could no longer walk or use his arms. He was feeling very anxious after a terrible first night on the ward, over-speaking through gasping breaths, his room oppressive without an opening window. We talked about what was making his breathing harder and decided some fresh air might be helpful.

We set up the wheelchair and moved to sit under the maple tree at the front of the building, facing the railway line. He asked me to pull his jumper zip closer to his chin. It was velvety caramel cashmere. I gently zipped it up. He stopped talking, stopped gasping, rested his tense neck back in the head support of the wheelchair, and closed his eyes.

“Are you sleeping?”

“No. I’m relaxing.”

We sat, while a flock of gaily plumed rainbow lorikeets carolled on the boughs above us.

Physiotherapy notes: very short of breath at rest; review in one day

He died that night.

I thought about his caramel cashmere.

I see in the clothes a symbol of continuing life. And proof that I still want to be myself. If I must drool, I may as well drool on cashmere

JD Bauby, The diving-bell and the butterfly

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I shared a conversation in Palestine, over Arabic coffee and medjool dates, with a woman diagnosed with cancer:

“Tell me about your oncology experience.”

“The oncology department was very bad. The building was horrible and miserable, even the equipment and the tools. All the people were sad, all the people near to you were feeling pain.”

“Was there anything that made you feel better, in that time?”

“One day, two young people entered the chemotherapy room smiling. I got a surprise. Someone was smiling! I discovered how important it was just to laugh and smile. It gives you power. Thank God I found someone who was smiling in that moment. I felt something had changed in the atmosphere of the oncology department. I woke up. I gave them a smile also.”

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Medical notes: deteriorating; referral to physiotherapy for neck review

One of our patients, a refugee, had been on the ward for 9 months, waiting to die. His family overseas anticipated their never-to-be-granted permits to visit. We gave him excellent medical care to keep him pain-free, to keep him comfortable. He rarely talked. He read his Koran, mostly.

Physiotherapy notes: neck weakness; provided with soft collar; comfortable sitting out of bed in electric recliner chair; nil further physiotherapy goals; monitor

I popped into his room. He was on the low priority list for physiotherapy monitoring.

“Are you comfortable?”

“Yes.”

“Do you have any pain?”

“No.”

“Do you have any cramps?”

“No.”

“Is your neck collar helpful?”

“Yes.”

“Can you still hold your Koran?”

“Yes.”

“Can you still turn the pages?”

“Yes.”

“OK. That’s good.”

I turned to leave, to go to the next patient on the priority list, and stopped.

“Is there anything I can help you with right now?”

[Long pause]. “Yes. I would like to go outside.”

We spent an hour adjusting a wheelchair to prop up his ailing body and took him outside for the first time in months. We sat under the maple tree, by the railway line, our backs to the beach. He shared photos on his iPhone. The birthday party of his grandson. His smiling wife. The gaudy green balloons and the green cake icing. He showed me his children and their partners and their homes, and talked of his journey to get here, and his job as a boutique shoemaker. We talked about what it meant to miss his old life.

Physiotherapy notes: manual wheelchair set-up in room; please take outside as tolerated.

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My children’s great grandmother died last week. We watched her funeral via livestream. The boys munched on crisps, while the adults drank a shandy in her honour, like we were settling in for the premiere of a Hollywood blockbuster. The perks of distant funeral watching in COVID-19 times.

“Can we see her in that box?” asked our 7-year-old.

“No. The coffin is closed.”

“What does she look like? Is she grey? Does she look like a skeleton, or a zombie?”

“No. I bet she is wearing her gold rings on every finger, and all her gold necklaces, and a violet and emerald silky shirt, and she has her cherry lipstick on.”

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Medical notes: delirium; commence syringe driver; family phoned

Physiotherapy notes: medical notes received with thanks; nil further physiotherapy goals

The same day great grandmother died, I walked past a dying woman’s room. I had spent time with her before that, assessing her walking, making her safe. She was strikingly young and attractive, with long, slender limbs. She had kept apologising for all the fuss she was making, the fuss of being sick. I watched her sister bend close and lift the bedsheets. I heard the quiet sobs. Her sister ushered to me.

“I’m not sure if she has gone.”

She was warm. She was turning the creamy colour of honeycomb.

“Yes. I think she has gone.”

Even working around death, physiotherapists are seldom called to these final, intimate moments, these in-between spaces. We sat together, her, the devoted and grieving sister, and me, the physiotherapist, by this beautiful woman, holding each other, both touching her. We sat and watched in a silence that was at once sorrowful, reassuring and wondrous, as she left us.

I wrote short notes.

Physiotherapy notes: today, I sat with a family member as her adored sister departed this world. We sat for more than 5, still minutes. Her sister shared stories about her generosity and humour. When we were done sitting, I called the nursing staff to certify her death. I asked the nurses if I might help to wash her. It was only a small thing, but it was a privilege, and it was truly beautiful.

On my drive home, the world was a kaleidoscope of pulsating colour.

Rachel Coghlan is a palliative care physiotherapist, Board Director at Palliative Care Australia, and researcher at the Centre for Humanitarian Leadership at Deakin University.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.