This week is Dying Matters Awareness Week and following failings identified in recent reports by the Liverpool Care Pathway and Mid Staffordshire Foundation Trust, end of life care has never been more of a hot potato.
The theme of the fifth annual Dying Matters Awareness Week is "You Only Die Once" with the aim of getting people talking about and planning for the end of life.
As new research, published to coincide with Dying Matters Awareness Week (12-18 May), shows, millions of Britons are failing to make adequate plans for their death and don't know the wishes of their loved ones. The research found that 83% of the public believe people in Britain are uncomfortable about discussing dying and more than half of people (51%) with a partner say they are unaware of their end-of-life wishes.
Professor Mayur Lakhani, a practising GP and Chair of the Dying Matters Coalition and the National Council for Palliative Care, summed it up when he said: “Discussing dying is rarely easy, but unless we have the conversations that matter we’re unlikely to get the right care and support. Although it’s encouraging that increasing numbers of doctors are discussing end of life wishes with patients to help get them the right care and support, there’s still a long way to go. What we need now is a national conversation about dying, so that healthcare professionals and the general public become more comfortable in discussing dying, death and bereavement. Dying matters, so let’s talk about it.”
It’s not just the public who are failing to talk about dying. A quarter of UK GPs (25%) did not report having initiated a discussion with a patient about their end of life wishes – even though NHS figures show that on average 20 of a GP’s patients die each year. Although better prepared than the public, just 40% of GPs have talked to someone about their own end of life wishes, 57% have written a will, 57% have registered as organ donors/have a donor card, 33% have let someone know what their funeral wishes are and only 8% have written down their wishes about their future care.
The awareness week follows a new report “"The end of life care strategy: New ambitions", launched by the National Council for Palliative Care (NCPC), which said that a strong national vision is required if the care of people who are at or approaching the end of their lives is not to be put at risk.
The warning comes after it emerged that NHS England no longer plans to refresh existing national strategy documents, reversing an earlier announcement that it would be refreshing the National End of Life Care Strategy, which was five years old in 2013. Instead NHS England plans to publish new sets of actions and ambitions, which NCPC is concerned will not carry the same authority as the current strategy.
While welcoming the inclusion of end of life care as a priority in the most recent NHS Mandate, the report raises concerns that the momentum behind the National End of Life Care Strategy may be lost and calls for any new actions or ambitions to command the same level of credibility at a national and local level that the National End of Life Care Strategy has done.
Hopefully this awareness week will allow patients to see that there are options at the end of life and they should make adequate plans for their death or that of their loved ones. It will be especially important as a way of opening dialogue for people with dementia and plans for vulnerable older people.