A palliative care doctor reveals the ups and downs of dying from the bedside of hospice patients

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One of Rachel’s most heart-wrenching memories is when a woman in her twenties, suffering with breast cancer, decided she wanted to marry her fiance in the hospice.

After knowing the young couple’s wishes, the staff started working on creating a perfect day for them, involving their friends and families.

But after a blissful big day, the bride died just 24 hours later in her new husband’s arms, still wearing her white wedding gown. 

Rachel recalled: ‘When Ellie is proudly wheeled by her father down our impromptu aisle, not a person in the room is dry-eyed. 

‘You do not need to be a doctor to see how tenuously she clings to life and the world around her.  A ghost of a girl, lighter than air, using every last scrap of herself merely to stay in the room with us. 

‘There is nothing left with which to smile. I see her head droop for a moment, her eyelids half close. Come on, Ellie, hold on a little longer. I hover in the corner, anxiety mounting, ready to intervene if I absolutely have to.

‘Half-stifled sobs fill the room as they registrar begins the ceremony. But James, I notice, is all smiles. 

‘And not just any old smiles. The face-splitting, heart-lifting, cartwheeling kind – foolish and incredulous and bursting with wonder that this woman, this one-in-a-million woman before him, has deigned to be his bride. 

‘Ellie grows, glows, and as she says “I do” she is suddenly, wonderfully luminous. Ellie – no longer a dying young woman, but a bride on her wedding day, radiant, ecstatic. 

‘Her cancer vanishes. And everyone sees it, everyone feels it, the world falling away until only one thing remains: two twenty-somethings getting married.

‘Ellie spends twenty-four hours in her husband’s arms before drifting into unconsciousness. She dies the next day, still held by James, still wearing her dress of white chiffon.’ 

Another of Rachel’s tales describes how a skeletal woman suffering from acute pain is taken from extreme agony to ecstasy after a nurse administers  entonox [laughing gas]while singing her favourite disco hits. 

Florence, in her late eighties, was admitted with an aggressive cancer that had caused multiple fractures to her bones. 

She was too weak to withstand surgery and was forced to endure the grate of bone on splintered bone. 

A nurse suggested to Rachel that when Florence, who ‘was scarcely more than a skeleton wrapped in parchment’, was moved in bed to prevent developing skin damage, the laughing gas should be used to reduce the pain.

Rachel recalled the staff member saying: ‘”I’m going to try it tonight. Florence loves music. We’ll have a little Entonox party”.’

The doctor came in the next morning and asked if it had worked, to which the nurse replied: ‘”Did it work? Rach, it was b***** fantastic. 

‘”I put on Gloria Gaynor, we were both singing our guts out. The entonox was brilliant and, you know what? She hardly even noticed when we moved her. It worked like a dream.”‘

And later, Florence told Rachel: ‘”I do love listening to my daughters’ disco music. I just forgot to be worried. And then it didn’t hurt like before. And I realised it might not hurt like that next time.”‘

‘I saw, in an instant,’ Rachel added. ‘That what the nurse had restored was perhaps the most vital of all qualities in hospital. She had given her patient hope.’ 

A farmer in his eighties – who, Rachel said, was devoted to his wife and his ‘unruly clan of children and grandchildren’ – confronted the end of his life by sharing a deathbed confession with his doctor. 

‘”All my life, Rachel, I’ve been lying. All my adult life,”‘ he whispered to Rachel. 

‘”But what you have to understand is that I grew up in the fifties. When I was a boy, what I was, it was a crime. Either I lied to myself, or I accepted I was… a deviant. That was no choice at all.”‘

Rachel added: ‘I did not move a muscle. I knew I was being handed something precious, profound. A secret so sacred I felt less doctor than priest.’ 

‘”I loved someone else”,’ said the man. ‘”And I could never tell my family”.’ 

Rachel explained: ‘For decades he had been in a gay relationship. Covert, shameful, a lifetime spent in hiding. 

‘I had the sense that he was grieving for the man he had never been able to be, his true self, his real self, stifled by society’s prejudices and his personal sense of duty.’

‘”I couldn’t be there when he died.”‘ the patient admitted to his doctor about his long-time lover. ‘”His children were with him at the end, not me. And even if he was still alive today, he wouldn’t be able to be with me now. I’m alone.”‘ 

One of the most inspirational patients for Rachel was a man who spent his days drawing the beauty he’d find outside his window.

She wrote: ‘For me, there is nothing in this world more life-affirming than working with patients close to life’s end whose sense of wonder remains intact. 

‘I am surrounded at work by patients who have never loved life more fiercely and who, by rights, you could argue, should be consumed by bitterness.

But, so often the opposite is true. Life, somehow, wins out. Shortly before he died, one patient, Peter, captured the anguish and ache of it perfectly: 

‘”I love my wife. I love my daughter. I love every single thing about this world.” The yearning in those words was almost unbearable to hear and yet, as he said them, he was smiling. 

‘Later, too weak to leave his hospice bed, Peter – a dying man who knew it – would raise his eyes to the trees outside and paint water colours of the birds at his window. 

‘He ended his days still living, still loving, still creating. And I am not sure you get more inspiration than that.’

For Rachel, her first palliative care patient, a man named Ron, showed her just how much the care offered to those dying meant to the relatives and friends left behind.

His wife Julie climbed onto her dying husband’s bed to say her goodbyes and hear him draw his last breath.

She would then be offered ‘hugs, cups of tea, shoulders to cry on,’ by the many members of staff at the hospice and would return weeks later to show her thanks.

Rachel recalled: ‘Weeks later, when she returns bearing baskets of gifts for the doctors and nurses, Julie will talk of how much it meant to her, those act of kindness from the hospice staff that tempered the time grief was blinding her.’  

These are the moments which, Rachel said, taught her ‘everything she needed to know about living.’ 

 

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