Why Dying Matters - Nottinghamshire Hospice
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18th May 2018

Why Dying Matters

Why Dying Matters

A night in September 2010 is etched in my mind. I spent it on an overspill cancer ward, attached to a drip, battling an infection with a white blood cell count of zero. Earlier, a young doctor had blithely told me “If you weren’t on antibiotics you’d be dead!”

In the bay behind me, a woman lay dying. Her rasping breath and whimpering voice echoed around the ward. Her speech came out in little bubbles between laboured breaths as she struggled to get her last words out. The entire ward was an unwitting, captive audience to her final hours.

I heard her last exchanges with her husband, as he tried to reassure her that hers was a life well-lived, that her legacy would be lasting, that those she left behind would be all right.

I never saw her and knew little of the circumstances that brought her to this point. I learnt her name, but for the purposes of this article I will call her Anne. Earlier, my husband, as the nearest neutral stranger, had been asked to witness her will.

The cancer ward we should have been on was closed for deep-cleaning. The replacement space had a derelict feel, the far end used as a dumping ground for defunct hospital equipment. The linear rows of beds were reminiscent of an old Victorian hospital ward. The few private side rooms were all occupied with other dying patients and their distraught families.

Poor Anne, I learnt, had wanted to die at home, or, at the very least, in the relative privacy of the hospital’s on-site palliative care centre. But there was no room at the inn, so her story was to end there, on the open ward.

I couldn’t sleep that night. My body was exhausted but my brain refused to let go. The sounds of the dying didn’t help. I have rarely felt so anxious.

The nurses, in an effort to provide some privacy, cleared some of the debris from the far end of the ward and moved Anne further from the other patients. The sounds became fainter, but although I could no longer make out the words I could still hear the rasping breath and little bursts of speech long into the night.

Eventually, I slept.  When I woke a few hours later the ward had fallen silent.

And I thought to myself. There has to be a better way to die.

Eight years on, my cancer well behind me, I’m working at a hospice charity with people who are in their last year of life, and I’ve seen how different the end of life experience can be.

Walking through the door on my first day it was with slight trepidation. Would Nottinghamshire Hospice be a gloomy or distressing place?

Far from it –  very soon I was struck by a feeling of light, not darkness, and crucially, of life.

Because Nottinghamshire Hospice is about life, not death. It’s about giving people the space to live as fully as they can in the time that they have left and taking the pressure off those around them, whether that is through the Day Therapy services on offer at the hospice itself, or the day and night palliative care provided for patients in their own homes by dedicated nurses and healthcare assistants.

An important part of my role is capturing the stories of patients and those close to them. It is a privilege to have this window into the lives of people who have just months, weeks or days to live, and the place is full of small wonders. Watching a patient paint a sculpture with a trembling hand, or a man who thought his woodwork days were over piece together a bug box; hearing how an acupuncture session helped ease a lady’s pain, and meeting someone able to stay in his own surroundings because one of our nurses cares for him through the night, gives me a sense of intense pride at the organisation I now work for.

Sometimes I think back to that night in 2010, and wonder about Anne’s husband. How was he after that distressing night? Who was there to help him?

Contrast that to a story I heard recently from a man whose young wife died last year. He told me how the Hospice at Home service helped him through the most traumatic time of his life. “I can’t thank the hospice enough for how much they helped me, and they are still helping me and my family through our grief, ” he said.

Which brings me to the conclusion – how we die, the circumstances leading up to death, the environment in which we die, and what happens afterwards, all matters, not just to the person themselves, but to those left behind.

– by Clare Stevens, Marketing and Communications Officer (PR) at Nottinghamshire Hospice