As Tyler Durden told us in Fight Club: “On a long enough timeline, the survival rate for everyone drops to zero.”
Yet we tend to shy away from talking about our, or our loved ones’, deaths, scared we will be labelled ghoulish, insensitive, defeatist.
Seems the first rule of dying is not talking about dying.
The result is people don’t get a ‘good death’: 70% say they want to die at home, but around 54% die in hospital.
Since 2010, more than 500 UK families have stopped an organ donation going ahead, despite knowing or being informed their relative wanted it. An estimated 1,200 people have missed out on a potentially life-saving transplant this way.
The only way to change this story is to break the taboo and start telling each other how we want to die, and what we want to happen afterwards.
The stats talk for themselves: at any one time, about 25% of all hospital beds are occupied by someone who is dying and providing good, community-based end-of-life care could reduce hospital costs by £180m a year.
The healthcare community is starting the conversation – reviews and strategies have been published, conferences have been held and the winners of the inaugural National Council for Palliative Care (NCPC) have just been announced.
Today, the Royal College of Physicians and Marie Curie published End of Life Care Audit: Dying in Hospital, which found 11% of hospital trusts in England provide specialist palliative services round the clock.
Is it time for us all to start facing up to our own mortality?
Plan for life and death care
Jacquie White, Deputy Director for Long-Term Conditions, Older People and End of Life Care at NHS England, gave the keynote address at Palliative and End of Life Care: Collaboration, Compassion, Choice.
“I want us to support people as well as we can until they are ready to die as well as they can,” she told the meeting.
She explained that 16million people in England have one long-term condition (LTC), while 10million have two or more, and 1million are living with frailty.
These conditions account for 75% of the UK’s 500,000 annual deaths, but only 20% of people with an end-stage LTC receive palliative care, meaning they are unlikely to get a ‘good death’.
Drafting care plans from diagnosis to death for all people with LTCs, she argued, would help thousands of people, by making sure their wishes are known from the start.
A recent court case saw a woman convicted of murdering her 67-year-old father. The defence described the man’s “intolerable” MS, and said his death was the result of a failed suicide pact. The prosecution said the man had never expressed a wish to die to his healthcare team.
A complex and tragic case, of course, and one to which we are not party to all the facts. But we have to ask if the presence of a care plan that included wishes for advanced and palliative care, could have had a bearing on its outcome?
We work in MS: it’s a neurological condition that typically strikes the young. It either gets progressively worse, or follows a relapsing/remitting course, where relapses can strike at any time, and leave behind ever growing traces of physical and mental disability.
It’s debilitating, and the common symptoms, which tend to get worse over time, include fatigue, walking difficulties and cognitive impairment, to name but a few.
While people do not tend to die of MS, they die from problems related to their condition, and one of the biggest questions the MS specialist nurses we work with have is when should they refer to palliative care services.
It’s a tough one. Ms White’s call for all LTC care plans to include palliative options is laudable, but how does a nurse sit down with a 35-year-old mum of two and start talking about her death?
The Mental Capacity Act says someone lacks capacity to make the big decisions if they cannot understand the information being given to them, retain that information long enough to make a decision, weigh up the available information, or communicate that decision.
So when during the disease course, which could be 10, 20 or 30 years, would you bring it up? At the first sign of cognitive decline? At the first relapse.
Maybe if we were all, as a society, talking about this, this and so many other conversations could be easier.
According to a number of case studies presented at the conference, creating and sharing advanced care plans is the key, and will help the NHS deliver “effective and efficient” palliative care.
Coordinate My Care (CMC) is an online service that allows people with LTCs in London to share their emergency care plan electronically with all NHS services, including ambulance staff, in real time.
A total of 26,996 patients now had a personalised CMC care plans with the London-based project, and of the 11,432 deaths it has witnessed so far, just 17% had been in hospital. That’s compared to the national average of 54%.
It’s the kind of service you are astounded is not already common practice, and it simply means those who express a preference to die at home are more likely to do so.
There’s been nothing simple in making CMC a reality, however. Professor Julia Riley, Clinical Lead on the project, has been working tirelessly to bring it to fruition.
As with so many initiatives in the health service, success is down to the individual clinicians who take it upon themselves to design, build and implement them.
It’s now up to her fellow healthcare professionals to pick up the baton and roll out similar projects out across country.
But do we, the public, also have some responsibility to bear?
Life-long end of life
myDirective is an app people can use to record their own end of life wishes, and is aimed primarily at younger people – the average age of people who have already put together a video plan is 48.
“We have tried to give people the tools they need to make an emergency and advanced care plan,” said Jonathon Carr-Brown, European Director for the global initiative, adding it wanted to “normalise” the process of advanced care planning.
Laura Tooley, Programme Lead of the West Midlands Strategic Clinical Networks and Clinical Senate also spoke about normalising the death conversation, pointing out if people know your end of life wishes, you are more likely to achieve them.
She is a firm advocate of organising and attending Death Cafes. It’s a growing global movement in which people go along for a cup of tea, a slice of cake and talk about what and how they want their death to happen, their life marked and their legacy, both financial and spiritual, distributed.
This year’s Dying Matters Awareness week will run from May 9-15, and which hundreds of events will be held across England and Wales encouraging people to talk openly about what they want.
We, as society, need to change the first rule of dying. We need to talk about it.
Choosing how to die isn’t the same as choosing to die. It’s about accepting the inevitable and making a conscious decision to influence it, before it’s too late. And it’s probably one of the most empowering things we could all do.
Oyster and the British Society for the Study of the Liver Nurse Forum has produced an e-learning toolkit to help specialist nurses talk about palliative care with people facing end-stage liver disease. Go to www.basl.org.uk to find out more.
Published on: March 31, 2016