GPs discussing death should not be taboo

Blogpost from Daily Mail, 19th October 2012

Dame Cicely Saunders is ranked alongside Aung San Suu Kyi, Dietrich Bonhoeffer, Martin Luther King and Nelson Mandella in former Prime Minister Gordon Brown’s book ‘Courage: Eight Portraits’. Dame Cicely spent eleven years thinking about how to develop a place where people who knew they were dying of cancer could be looked after with holistic care, before founding St. Christopher’s Hospice in 1967. She knew from her own experiences of grief that medical care wasn’t enough: for people to be treated with dignity at the end of their lives required a co-ordinated approach of pain-relief, psychological and spiritual provision, and recognition that family and friends need to be supported too. She transformed both the approach and attitudes to end-of-life care, initially just for those with cancer but then extended the approach to others too, and her method has been copied world-wide.

So when we hear that GPs have been encouraged to think about which of their patients could be nearing the end of their lives, we should be really pleased. How many stories do we hear of people not getting the support they need when dying, people not being asked where they would like to die, families not being asked about arrangements to provide for their loved one as the end approaches? Apparently 35% of GPs have never initiated a conversation with any of their patients about how they would like to be provided for as they face death. Considering death is such a certainty, isn’t this a ridiculous taboo? GPs are now being encouraged to proactively think through who will need end-of-life care, so that it can be thoughtfully discussed and sensitively planned.

So the last thing we need are sinister stories about ‘death lists’ and that people are being ‘singled out’ as those who are ‘going to die’, and the implication that this is about saving money. This is journalism at its worst: scaremongering, damaging and disingenuous. Some of those who were summoning up the courage to talk to their doctor about their fears and concerns of dying now will not do so, having had the trust in their GP undermined.

Ironically one of my frequent complaints has been that we don’t know which GP’s actually sign up to the National Gold Standards Framework which was designed to ensure the best possible standard of care for those nearing the end of life. As patients we should know what our local GPs offer and when I am elderly or dying or both, I will want to be registered with a practice that has signed up to the Gold Standard. I will want to review how and where I will die. Predicting the timing is an innacurrate science, but at least when death begins to loom, my wishes will have been made known. Polls show that most people want those discussions, with up to 70% wanting to die at home but the majority of us still dying in a hospital, the modern equivalent of the Poorhouse.

I hope all newspapers who have run the scare stories will now run some features on how palliative, hospice and pro-active end-of-life care have enabled people to be treated with dignity in their final months and days. 1% of their readership will die this year (the average annual rate), and it would be a horrific to think that some people may die unsupported because they were too scared to talk to their GP. Dame Cicely would be appalled.

About Julia Manning

Julia is a social pioneer, writer and campaigner. She studied visual science at City University and became a member of the College of Optometrists in 1991, later specialising in visual impairment and diabetes. During her career in optometry, she lectured at City University, was a visiting clinician at the Royal Free Hospital and worked with Primary Care Trusts. She ran a domiciliary practice across south London and was a Director of the UK Institute of Optometry. Julia formed 20/20Health in 2006. Becoming an expert in digital health solutions, she led on the NHS–USA Veterans’ Health Digital Health Exchange Programme and was co-founder of the Health Tech and You Awards with Axa PPP and the Design Museum. Her research interests are now in harnessing digital to improve personal health, and she is a PhD candidate in Human Computer Interaction (HCI) at UCL. She is also dedicated to creating a sustainable Whole School Wellbeing Community model for schools that builds relationships, discovers assets and develops life skills. She is a member of the Royal Society of Medicine’s Digital Health Council. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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