Patient Charters – it takes 17 years for 10% of nursing research to be put into practice, so while we’re waiting to make improvements, maybe worth having a look at what Patient Charters offer.
As more of us live longer and end of life care has become a bigger issue, UK governments have begun to deal with death, tentatively broaching this very British taboo.
At the same time, doctors and nurses have developed a Charter that is made up of 7 pledges to improve the quality of end of life care. See the End of Life Patient Charter.
While these are fairly standard official reports, part directed at the profession, there’s important information in here for the individual, so worth a look.
For professionals, the General Medical Council offers guidance to doctors on ethical principles at end of life: Treatment and care towards the end of life: good practice in decision making. There’s a Gold Standards Framework programme to improve end of life care.
England and Wales
Government’s End-of-Life Care Strategy is a policy document which is pretty much a list of ‘should-haves’. It’s about high quality care and personal treatment that’s dignified and appropriate. Although the Strategy isn’t enforceable by law, it’s an outline of what patients ‘should have’ and flags up the need for all care-providers to work together. But it’s the stress on communication with patients themselves that’s key in all this.
At the heart of the strategy is the End-of-Life Care Plan which, like a birth plan in pregnancy, allows patients to say what matters most to them – the kind of treatment we want or don’t want, who we want with us (and who we don’t!) and where we’d like to be when it happens.
Scottish Government has a national action plan for palliative care and end-of-life care called Living and Dying Well. It’s a document of best intentions aiming for ‘a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement’.
Living and Dying Well is a mixture of action points for the NHS and other care providers on how best to work together. It also flags up examples of best practice from the likes of Marie Curie and MacMillan nurses as well as pilot projects throughout Scotland. But the document’s most important job is to tell us what we should expect when it comes to end-of-life care. These are real plans for real people – not vague manifesto pledges. So, have a look at it, find out what your local health board, GP and private care providers ought to be doing, and hold them to account.
Patients rights advice service
Patients now have a legal right to complain, give feedback or comments, or raise concerns about the care they have received from the NHS. There is an independent advice service set up across Scotland, the Patient & Advice Support Service (PASS), that aims to raise awareness of these rights and provide support to patients on how to give feedback about their healthcare. PASS is delivered through the Citizens Advice Bureau and Patient Information Centres.
In Northern Ireland the Executive is also getting its head around end of life with a consultation document: Palliative and End-of-Life Care Strategy for Northern Ireland.
The idea is to have a five-year plan that will make high quality end-of-life care a priority among health professionals and offer us all choice in how and where that care is delivered. In practice that would mean that every patient with end-of-life care needs should have a key worker or case manager and that specialist advice and support should be available 24/7. The document also recognises that what you see as the perfect care package might not be what I fancy, and vice versa.
The Strategy aims to have an Advance Care Plan in place for individuals regarding personal preferences and needs, acknowledging that one size very rarely fits all.