‘Whole Person Care?’
Dr Rosie Cleere
- Winner of the Prose entries of the MWF Junior Doctor Prize 2022
To any passer-by, my father had become an empty shell. His flesh seemed to slide from his bones and his eyes retracted into small pools of purple. His once luscious curls seem to limp across his forehead. Every element of his surrounding felt languid too, hot and dense with the smells of cleaning products and stale gravy. There is a strange pathetic fallacy to hospitals, how the corridors can seem simultaneously bright and daunting, depending on your visit. ‘Your dad would be proud of you’ the doctor had told me distractedly, as he poked around for a vein, with an almost comically chirpy demeanour. I stared at my father’s translucent skin, his internal wiring on show to the world. I wondered how this doctor knew my father, how he knew how he felt about me.
My dad was my best friend. He had told me stories of his travels and his adventures. Of how he worked in book shops and theatres, how he had travelled in the army and lived in the smallest fishing villages of Cornwall. He had taught me to read, to explore the lives of others through the written word. He had taught me to find adventure in life, taught me to think differently, to dream differently. When I speak to people about my dad, it is so clear that he had impacted people’s lives so dramatically in brief meetings and had inspired many tales spoken in dingy pubs around lit fireplaces.
My memory of my father is lego towers, encyclopaedias, and chimney smoke. Seagull cries, waves crashing against glass windows and salt on boiled new potatoes. My memory of my father is not ‘mesothelioma, with liver metastases’.
Sometime later, my father was moved to a hospice. I waved him off from the doorstep, knowing that his bed would remain empty from now on. To me, my father had died already, been taken away to live his last days with those faceless doctors and their secret languages. But I was wrong.
My father’s room at the hospice was different. The double doors opened to a duck pond, where ducklings bathed with their mother, the water pooling into droplets like diamonds on their backs. ‘I hear your daddy loved the water’ said the nice lady who greeted us. A small CD player sat in the corner. Boxy and old, it infused the room with Rachmaninov, Aretha Franklin and Van Morrison, as though I was home in our striped living room on a hot Sunday evening. The team made us foods that we enjoyed as a family, and guests gathered around his bed. They shared stories of his life with me. Some of the stories they shared were ones that I had yet to be told. Stories that would otherwise have been stolen by time.
On the day of my eighth birthday, I blew the candles out on my cake. It was pink and purple and flowery and everything an eight year old could ask for. I made a wish that my father would not die before my little sister’s third birthday. I wished that my gift to her could be a day not scarred by loss. I wore my favourite gingham dress and jelly shoes to visit him in the afternoon, to share with him all the excitement of the day. But when I arrived, he was lost in unconsciousness. My heart sank. Jackie, my favourite nurse, scooped me up and asked me what I had got for my birthday. She shared with me that my dad was excited for my birthday, and he was simply too sleepy to tell me himself, so had asked her to send the message. Jackie had sat with my father for hours over the months he had stayed at the hospice, she had drawn from him his wishes, fears and hopes. She had learnt about his adventures and quirks and passions… she has become his friend. She was my friend too. When I left him that night, I knew he had his friend with him.
At the hospice they had made me a badge that read ‘Daddy’s Nurse’. They taught me to dampen his mouth with a small sponge to help stop his mouth from getting too dry. I would brush his hair and help to spoon mouthfuls of porridge into his mouth, blowing on them first, the way he had done for me years before.
Two weeks later, I settled into the armchair by his bed. The night’s air drifted through the widows, the curtains dancing in the shadows. The radio played the fishing forecast, a familiar sound of my childhood, as my father drifted in and out of sleep. My mother was around the corner, making hot chocolates for us to share around his bedside. My uncle snoozed across the room, his chest rising and falling like the tide. I looked at my dad. My teacher, my protector, my friend. I noticed the stillness of his face, the stillness of his chest and I realised that he wasn’t breathing anymore.
“Mummy…!”
…
Although I didn’t have many years with my dad, his impact on me has been ongoing and evolving. When a person dies, they leave behind more than just a body. They leave behind the way they made you feel. My dad left behind a wife who had experienced a love she could not replace and that taught her to view the world differently. He left a three year old who sought memories through photos and stories and now tells the stories of others through theatre, drawing on her grief. He left behind friends who still to this day, reflect on his words of wisdom when making their biggest decisions. He also left behind me.
20 years later, I am a doctor. I see patient after patient, reduced to their diagnosis and management plan, reduced to discharge planning and bed management. In my work, my father remains my biggest teacher. Thanks to him, I am reminded to search for the opera singer behind the dementia, whose psychosis is immediately soothed by La Boheme. I see the family, the stories, the ghosts and the experiences behind every patients’ eyes. For me whole patient care is respecting that behind the body you observe and treat, there is the magic of their whole life to be considered.
Today I am seeing a palliative patient whose prognosis has worsened. His son, a little boy, about 6 years old sits in an armchair, his little legs don’t quite touch the floor. His eyes are filled with fear as I approach.
‘Hi, I’m Rosie, one of the doctors. Tell me about your daddy.’