Paula Shepherd is a University Practice Learning Adviser for Bournemouth University; supporting pre-registration health education in practice. @pshepherdBU
‘Here lies Lester Moore, 4 slugs, from A44, No Les, No Moore’
At the age of 14, I received the ‘A Small Book of Grave Humour’ in my Christmas stocking. It contains tombstone inscriptions which reflect characteristics of the person memorialised or, should I say, the person selecting the stone. An odd selection for a child, but even at that formative age I realised that we all live on in some form, what we do influences the way the world works; has an impact. So why, I wonder, do we seem so reluctant to incorporate life and death as unified progression?
Five years later, I am a student nurse seeing death for the first time. Until that point my experience was from literature – Dracula to Shakespeare. What did I witness in those early days? An acceptance of the inevitable, a task orientated approach that perhaps provided protection of the nurses’ feelings when providing care, in that it followed a process. It focused on comfort, sought to address pain, but did not always address the individual needs of what death meant to the person and their family. I quickly realised that, unlike literature, end of life is fluid and changes constantly. This helped me to explore my own views and formed part of the nurse I have evolved into.
I learned that speaking of death to patients is actually natural; as skills develop you learn when to enquire, engage and withdraw. At times the need for families to have their fear acknowledged was almost palpable. We so often joke about our demise, but so rarely have that meaningful conversation. As a nurse I have been able to facilitate those opportunities, mindful that what happens today lasts a lifetime.
This year I have had cause to reflect on my personal experience of death. It is 15 years since my father died at 61, after a long period of illness. I often felt inadequate, as my Mother was reluctant to permit me to contribute actively to my Father’s care. I had to appreciate they wanted to do it their way. To the end Dad remained alert and conscious of all around him. End of life care may have facilitated us, as a family, to support and contribute more effectively.
My mother now has dementia and her life is ebbing away in a different way. I have cared for her physical needs but how does one care for someone who is a changed person? She no longer knows my name. What hurts most is that the person who used to sit in the bath with a brandy reading Pepys’ Diaries, her favourite gossip columnist, is no longer there. What has helped is that we had conversations about what she would wish, how we should care for her. The care home team where Mum now resides understand her and include us in her care at all times. They understand the loss we experience and seek to help us develop new memories.
In July last year my little brother died unexpectedly at 37. His partner, who gave birth to their first son in November, is bereft. The numbing shock is heightened by the conscious thought that we do not know if his wishes are being followed. This has caused me to wonder why we do not talk more openly of end of life. If we spoke more openly within our culture, would professionals feel more able to support and guide?
The NICE guidance on end of life care acknowledges communication is instrumental. The furore over the Liverpool Care Pathway undermined its value. As a practitioner it aided those discussions, helped me to support more junior staff in developing their practice, and enabled me to explore the cultural aspects of death. Of greater importance was that I had the critical thinking, compassion and care to help encourage patients and their families to explore their wishes sooner. NICE identify that healthcare professionals need to have the resources to provide end of life care effectively. Open and honest communication takes time, as it requires trust first.
Most memorials are prepared by those left behind, a last opportunity to realise the person’s value to others. Like tombstones we are all individual and whilst our names may be ‘writ’ in water’ the ripples last forever. As professionals we are able to use our skills to help those ripples soothe and guide, but we need the importance of end of life as part of life to be included in all that we do.
Image credit: Leszek Leszczynski via flickr