A palliative care specialist reveals what she’s learnt
[W]ith two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.
If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.
At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.
So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.
Closure is important
The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.
Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.
Don’t let fear stop you
When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.
I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.
The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.
Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.
Trust a professional
My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.
I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.
I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.
Focus on pain relief
While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.
I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.
Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?
She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.
Communication is key
My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.
It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.
As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.
Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.
If he had been given an informed choice about treatment, I’m sure things could have been different.
Say goodbye the right way
A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.
On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.
A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.
Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.
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