Dying Matters Week (10-16 May 2021) - We learn when we listen to our patients...

Posted: May 10 2021

Dying Matters Week (10-16 May 2021) - We learn when we listen to our patients...

Talking about dying isn't easy, but it matters. The Dying Matters campaign aims to create an open culture that talks about death and where people feel able to listen and support those who are planning for end of life, who are dying and who have been bereaved. The campaign also aims to break the stigma around death, to challenge preconceptions and to normalise public openness around death and dying.

Mary Heffernan, Clinical Quality Lead for Children's Specialist Community Nursing, would like to share her experience with a 15 year-old girl called Ellie Bea and the things she taught Mary during her care.

From Mary Heffernan:

I have been a Nurse for 34 years. I want to share some of the things Ellie Bea taught me, during the time I cared for her.

Ellie Bea was 15 years old with a diagnosis of Anaplastic Ependymoma -a brain tumour. She died a week before her 16th birthday at home with her Mum, Dad and both her dogs (Poppy and Milo) next to her.

Ellie Bea was artistic, intelligent, funny with a dry sense of humour, and was not influenced by others. She was an animal lover; she loved her dogs. She was mature, quiet, had a distinctive style and knew her own mind.

Ellie Bea liked being at home with her Mum, Dad, and her dogs. She also enjoyed horses and horse riding; Ford Mustangs, fast cars and motor bikes; listening to rock and metal music; the colours green, red and black; her phone and Instagram; photography, anime, Pokemon, cosplay, and Japan amongst many other things.

Ellie Bea was involved in all discussions regarding the diagnosis of the brain tumour, its treatment, Advance Care planning, her wishes and hopes during her life and planning for her end of life. These were the most important things for Ellie Bea and the key things I needed to be aware of while I cared for her:

  1. There should be no conversation about her, without her
  2. Be open and honest with her – she did not take fools lightly and was mature beyond her years
  3. She trusted that her Mum and Dad would “do the right thing” when she may not be able to make those decisions
  4. To understand that Ellie Bea knew when she had “enough” with regards to conversations and was clearly able to let us know when to stop. A person's young age should not prevent you from having conversations about what’s important to them and what they want to happen
  5. Importance of consistency when caring for Ellie Bea
  6. New people were introduced in the first instance, by someone who knew Ellie Bea
  7. She was honest in her feedback of the supportive services available to teenagers. She felt “what was advertised on the can was not what was actually inside”. She gave some valuable suggestions on how to improve services for teenagers.
  8. She confirmed how important it is to give teenagers time. Ellie Bea did not like to feel rushed and was very comfortable with chatting to me.

Thank you for your words of wisdom, Ellie Bea.

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