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Professor Keri Thomas, National Clinical Director of the Gold Standards Framework Centre, the UK’s leading provider of training for generalist health and social care professionals working in end of life care, writes about how embracing mortality as a society can transform the care people receive when they are dying.
“I don’t mind dying - I just don’t want to be there when it happens” (Woody Allen)
Many people find discussions about death and dying difficult - it is not a conversation many would relish having. In a culture in which we kid ourselves that we live forever, where we prevent early deaths and extend life so successfully, why should we consider this issue at all, as Dying Matters and others recommend we do? And although death hits our news screens every day, on a personal level we also recognise the sadness of death and the pain of loss of a loved one being one of the greatest psychological traumas we face. Are we, those working in this area of care, seen as ‘harbingers of doom‘ for both the public and in particular other doctors and nurses; and is even talking about death counterintuitive and counter- cultural... and just bad taste!
I suggest the reason that many of us think this is important is that if we face our own mortality and live in the context of our dying, we can live better, happier lives in the short time we are given. People nearing the end of their lives, or those who have had near-death experiences, often say they are grateful for the changed perspective and renewed priorities this brings, refocusing on what’s really important in life (love, relationships, family, forgiveness, thankfulness, being at peace etc), and worrying less about what can otherwise occupy our thoughts (work, money, achievements, prestige, esteem etc). No-one said on their death-bed: ‘I wish I’d spent more time in the office!’
And when the reality of death strikes home at a deeper level, as it did to me as a widow aged 25, we are different afterwards - and possibly better, despite the pain of that loss. “Your pain is the breaking of your shell that encloses your understanding,” Khalil Gibran wrote in his book 'The Prophet'. We are given the chance to ‘reboot’ or reconfigure our lives and focus on what’s more important. That’s why hospices can be the happiest of places, and why some say that those who have lived the most fulfilled lives die the best deaths. We live as we die and we die as we live.
Birth and death are the two immutable bookends of life. Can we can allow the reality of death, living a life framed by death, to help us live better lives in the brief time we are here, as many spiritual guides, poets, and philosophers acknowledge?
And this is also my personal experience: that living in the context of dying helps me live a better, more fulfilled life, and value, treasure and celebrate the important things in life all the more - including having five children! As a doctor, this motivated me to begin this work in end of life care over 20 years ago that has now grown into the work of the National Gold Standards Framework (GSF) Centre in End of Life Care, the leading training provider for generalist frontline staff.
As a GP working also in hospices in Yorkshire, I observed that things were going wrong too often for dying patients, leading to suboptimal care and overuse of hospitals. And this was not because doctors and nurses were failing in their clinical care, weren’t aware of which drug to use, or because they didn’t care, but mainly because they hadn’t planned early enough and systematically developed systems of care to prevent such distressing crises. So, with the help of other motivated clinicians, we developed a practical framework to improve the organisation of care that enabled earlier identification, better listening and more focused care in alignment with preferences. We asked, ‘What would gold standard care look like and what framework do we need to achieve it?’ And, with that, the Gold Standards Framework, or GSF, was born.
This clinically-led programme began in primary care, working closely with other GPs and nurses, growing ‘from the bedside not the boardroom’. Foundation/Bronze level GSF was extensively adopted by GP practices, and the first ten GP practices have now achieved our accreditation, endorsed by Royal College of General Practitioners. In 2004 we adapted GSF from grass roots for care homes. Now, ten years on, GSF is recognised as best practice by regulators (Care Quality Commission (CQC)) and all care homes groups. This has since extended to domiciliary care, hospices and other areas, all including the key core elements of earlier identification of decline, better listening to patient and family wishes by offering advance care planning discussions to every appropriate patient and planning better coordinated care to meet these wishes.
But the greatest challenge was to come with the development of a tailored programme for hospitals, where over half the population dies, where a third of people are in their last year of life and where death is often seen as failure. Since 2008, we have trained over 80 acute and community hospitals teams, and last month we were delighted to celebrate the first GSF Accredited acute hospital wards, co-badged by the British Geriatric Society. This affirms what is actually possible to achieve in hospitals through earlier recognition of decline, better listening to patients’ underlying wishes and more collaborative planning to meet their needs with better communication with community services and shorter stays as well as, crucially, more people dying where they choose.
Pictured: Staff from Royal Devon and Exeter hospital receive their GSF Quality Hallmark Award from Professor Sir Mike Richards, Chief Inspector of Hospitals at Care Quality Commission (far left)
Staff at GSF accredited wards say the greatest challenge has been the cultural shift, both from a patient and staff perspective. Professor Sir Mike Richards, CQC’s Chief Inspector of Hospitals, presented the awards and said: “We know that many hospitals struggle to identify patients in the last year of life and consequently find it difficult to coordinate their care adequately. By delivering earlier recognition and more effective communication with the patients themselves and other professionals in the community, the Gold Standards Framework enables better care for people in the last months of their life. These hospitals should be congratulated for leading the way and being exemplars for others to follow.”
His view was echoed by Dr Martin Vernon, End of Life Care lead for the British Geriatric Society who endorse the award, and said this was a milestone in advancing end of life care: “GSF accreditation in the general hospital setting helps to drive up quality in the delivery of end of life care by ensuring recognised standards are maintained by providers.”
Radical culture change was also the main benefit of doing GSF, according to Morecambe Bay’s Stroke consultant Dr Kumar, who said: “GSF has engineered a fundamental change in culture – shifting the balance of power much more towards the patient, allowing them and their families to take control of the final days, weeks and months of their lives... it’s not about the nurses and doctors taking a paternalistic approach. Rather, it’s about getting patients and their families to take ownership of their care. GSF is the framework that allows us to make that happen.”
So facing our own mortality, living in the context of our dying and enabling this to springboard radical transformational changes in the way we care for people near the end of life – to me this is the challenge we all face, both personally and as a society. We hope others will aspire to this challenge thereby developing a national momentum of best practice and help people live well and die well in the place and manner of their choosing.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66