Nursing my dying mother made me determined that everyone should have a ‘good’ death

By Adrienne Betteley

[W]hen my mum Joan died of oesophageal cancer in 2014, she was in the place she wanted to spend her last days – the spare bedroom at home – with me and my dad, Cliff, by her side.

I’d spent the last week in a camp bed next to Mum, wiping her lips and 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.” Afterwards, our district nurse made my dad a whisky and me a cup of tea as we said our final goodbyes.

Not without serious difficulty

Mum had a ‘good death’, but not without serious difficulties at times. I can’t help thinking it was my background as a district nurse that allowed her to die at home with her family. My experience meant I was listened to, and I pushed for her to get what she needed, such as acupuncture at the local hospice to relieve her crippling pain from arthritis. I knew what to expect and what conversations to have. We had early discussions about how she wanted to die (at home, not in hospital) and where (not next to Dad in their bed), which we call Advance Care Planning in the medical profession. At Macmillan, we believe that more needs to be done to ensure people are planning for their deaths, so their wishes – such as where they die – can be met.

Sadly, a death like my mum’s is denied to so many in this country. And I believe it would have been impossible for her too, had she not happened to have a nurse for a daughter. I had to fight to get her the care she desperately needed. Services are depleted, especially out of hours. You can’t choose when advanced cancer will cause you pain, but getting pain-relief at night or on weekends can be impossible. In her final days, there was no availability for a night sitter. Thankfully, I could be by her bedside, but had I not been, I’m convinced she would have died in hospital against her wishes.

Findings published in the British Medical Journal last week help explain why some people aren’t getting enough support when they are dying. Care for dying people varies hugely across different regions, both in how much money services are allocated and what care they offer. Figures suggested that, in most parts of the country, there are no specialist pain control teams, and, where they are in place, most operate only in normal working hours with no cover overnight. Until you’ve had a loved one in pain, with no way of providing them relief, it’s hard to appreciate the urgency of this situation.

Having a choice

Pain relief is the very least we should expect at the end of our lives. But it’s also important that, where possible, patients can die in a place of their choosing. We know that most people with advanced cancer would prefer to die at home, but not many of them actually do. Without round-the-clock community nursing, it’s hard to see how this will improve.

My days as a district nurse taught me that getting things right for people at the end of their life takes time. Decisions made about treatment affect how that person will spend their last months, weeks, hours, in this world. But time is something our overstretched workforce doesn’t have. Last month came another heart-breaking revelation – that over two thirds of nurses ‘don’t have time’ to care for dying patients. Is this really what we’ve come to? Something has to change.

Painless death must be priority

I know what a good death looks like, and that it is achievable. But to give everyone a chance to die without pain, and in the place they want to, care for dying people needs to be a priority across the country. As the NHS and local councils set out their plans to transform healthcare, it’s vitally important that they take into account how they will care for people at the end of their lives. At Macmillan, we’ll be monitoring these plans closely to make sure they do.

Those last few weeks with my mum were exhausting, but they were special and irreplaceable. Helping her in her final days with the people she loved, in the house she knew, was the most meaningful thing I’ve ever done. Caring how people die isn’t just about death, but about the value we place on life.

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