For Dying Matters week Carolyn Doyle, senior programme lead for the Waltham Forest End of Life Care service, kindly shares her story of how she supported her friend Nell, who was dying from bowel cancer, through "end of life".
My dear friend Nell had been dying for the last 4 years.
Following an initial diagnosis of bowel cancer which had spread to her liver, lung and bones she met the criteria to be considered at "end of life". You are considered to be at end of life if it is thought that you will not live longer than 12 months, the surprise question we have traditionally used to indicate this is “Would you be surprised if this person was to die in the next year?”. If the answer is “no I would not be surprised” then this is used as an indicator of being at end of life. This is not a scientific evaluation, rather an intuitive indicator which has been used over the past 2 decades to broadly determine life prognosis.
At any stage during the last 4 years, I would not have been surprised if Nell had declined and died within any 12 month period, yet she continued to enjoy holidays, family parties, the birth of a grandson and numerous other memory making moments during that most precious time.
We did not talk death every day and there were days we pretended we were not on this path. However, as she lay in her hospice bed gently dying I was shocked by the intensity of my own feelings of devastation at the reality that she was actually leaving us.
"My first role model, Nell was a happy professional and compassionate (but often crazy) northern lass who made such a positive impact on patients and families."
Nell had been with me throughout my nursing career, she had been the first inspirational woman I had met in nursing, the SEN on the care of the elderly ward I worked on for a year before nursing school. My first role model, she was a happy professional and compassionate (but often crazy) northern lass who made such a positive impact on patients and families. Her example was always as a compassionate leader, she led shifts on the ward and managed staff and patient care with competence, confidence in her practice, and above all she showed everyone kindness.
Nell’s example has underpinned my practice throughout my long career; she provided an anchor, a safe place to check out situations and off-load, a place where logic and common sense prevailed, or it seemed that way. Nell was never a person to follow the crowd, She was never backward in coming forward and would tell you if she believed you had done something wrong, but you knew her integrity was everything and if you were in the right she would stand beside you through anything. She was a tough cookie who survived surgery and chemo and decided herself when she no longer wanted to continue with the chemo, choosing quality of life over quantity.
I had supported so many people and families through this experience, yet in my personal life, the death of a loved one had always been a sudden event with no time to plan or imagine the world without that person. The death of Nell, my Nell, was a whole different experience, We had time to talk, to laugh and to cry. Nell remained in control even up to those last laboured breaths, during which my heart physically ached. I could not cry as I had promised myself I'd be strong and support everyone else, that's what good friends do, ignore their own grief and care for their friends and family in their suffering. This seems especially true when you are a nurse.
As I watched her adult children supporting their mum to make her final journey, loving and helping her every inch of the way, doing it Nell's way, I wanted to run, run and not stop until I could find a bed and a duvet to pull over my head and pretend this wasn't happening. Of course I didn't run. I stayed and took care of my friend and her family. I washed her hands and face, stroked her hair and held her hand and told her how much I loved her and how knowing her had enriched my life. If they say it takes a village to raise a child, I believe it takes a community, a unit of compassionate people (not necessarily family) to support a person towards a good death.
"The death of Nell, my Nell, was a whole different experience. We had time to talk, to laugh and to cry."
The ability to provide some elements of care for someone you love as they are dying is so understated, yet, for me, that's what gives comfort and is cathartic in helping the healing start. Even as she died, my Nell still had lessons to teach me,
"I stayed and took care of my friend and her family. I washed her hands and face, stroked her hair and held her hand and told her how much I loved her and how knowing her had enriched my life."
The importance, the necessity to care for those we love, (note to self to support families to do those things for the person who is dying), those little things that make the big differences, to comfort, to wash, to bathe, to hand hold, but mostly to recognise that as humans, it’s the connection of having someone by your side that gives comfort at the end of life to both the dying and those of us left behind.
If you have been affected by any of the issues raised in this blog, or you would like to get in touch with one of our end of life care teams, please contact your local team using the details below.
0300 300 1901
01375 364 435
Waltham Forest ICS enhanced palliative integrated care service (EPIC)
Number for patients to call: 0300 300 1710
Number for GP's to call: 0300 300 1707
Number for health care professionals to call: 0300 300 1709