'Frailty' and death certificates: worrying trends

Originally posted on the 19 May 2020:

The Relatives & Residents Association reported to the BBC Radio 4 Today Programme on the inappropriate use of words like 'frailty' on death certificates. The helpline received two calls in a week about the use of such words. The calls highlighted two separate issues: COVID-19 being listed as the cause of death when it may not be and COVID-19 not being listed due to lack of testing, making reliance on death certificates for mortality rates problematic.

R&RA Helpline caller, Shaikh Rehman, wanted to share the story of his wife Rosemary who sadly passed away in care. Rosemary had stopped eating and drinking after Shaikh's visits were restricted. Shaikh worried that his wife would think he had abandoned her, since he had been visiting daily for the six years Rosemary had spent in the home. He wrote to the care home with his fears that "Covid will not get her, it will be her stopping to eat and drink". Shaikh visited by standing at the window and was called to the home for a face-to-face visit when Rosemary was near the end of her life. Shaikh held Rosemary's hand and said "love, I am here".

The GP originally wrote 'Covid' as the cause of death on Rosemary's death certificate, but Shaikh challenged this as there had been no symptoms. He was told that the death certificate couldn't state that Rosemary had stopped eating and drinking, so it was changed to 'frailty and vascular dementia'. Shaikh is trying to get this cause of death changed too. After calling the Relatives & Residents Association Helpline, he has written to the Coroner, the GP and is receiving legal advice.

Guidance to GPs makes it clear that terms like 'frailty' or 'old age' should only be used on death certificates during the pandemic in very limited circumstances. The Office for National Statistics (ONS) reported in April a 40% increase in the use of such ill-defined words on death certificates. Due to risks of infection, GPs haven't been visiting and examining those receiving care in person as they normally would.

R&RA Director, Helen Wildbore, told the Today Programme:

"The wider ramifications are that we're not seeing the true picture of the impact Covid is having on older people receiving care. The reliance on death certificates for mortality rates has to be questioned, and figures on excess deaths in care homes may be the only reliable count of the true impact of Coronavirus in care settings."

By 1 May there were over 12,500 COVID-19 related deaths amongst care home residents in England and Wales, according to the ONS. But a further 10,000 excess deaths were recorded, which may be linked to the virus or the impact of the lockdown. A tragic and heartbreaking statistic.

Listen to the full broadcast here.