Get ahead and plan your end of life care before it's too late

Death: we need to talk about it.

Actually, we don’t. What we need to talk about is why communities and individuals do not plan for the inevitable.

We plan for retirement by squirrelling money away. We plan for the future of our loved ones by making wills. But we don’t plan for a medical crisis.

We give no thought to how our wishes will be conveyed if we can’t speak. We do not make time to explain to our loved ones what our choices would be.

Richard Smith, former editor of the BMJ, caused consternation last month by voicing a medical view that death from cancer might be the best death.

‘All deaths could be good deaths if we all did a little thinking in advance and disseminating them widely’

Medically, Smith may be correct but most people define a good death in terms of how it was managed.

Was it pain free? Did it occur in a familiar place? Did beloved family surround you? These aren’t medical issues they are issues of personal choice.

All emergencies could be a little less egregious and anxiety inducing for our friends and families if we thought early and often about some basic questions.

All deaths could be good deaths – or at the very least, better deaths – if we all did a little thinking in advance, recording our thoughts and disseminating them widely.

• Coordinated systems help ensure people die where they choose
• Support end of life care at home through partnership working
• Work together to provide the best end of life care
• Visit HSJ’s End of Life Care channel

Coordinated compassion

NHS England has recognised the potential of advance decisions and statements but the Electronic Palliative Care Co-ordination System is a medical response to what should be a civic duty – an act of compassion.

To approach this issue only in the last 12 months of life is too late.

It places individual choices in the realm of medical procedure. Worse, it can lead to the collection of information turning into a tick box exercise for hard pressed professionals.

Can we change this culture in the UK?

‘Clinicians are timid about broaching conversations concerning an individual’s wishes at the end of life’

An individual filling out a decisions and statements form well before a crisis would be a tangible example of a citizen making their voice heard, and doing something for themselves, society and the NHS.

There is an opportunity in England, and potentially the wider UK, to create a national movement around this issue.

Clinicians are timid about broaching conversations concerning an individual’s wishes at the end of life, so let’s take some of that burden away from the medical community.

We can use technology to help individuals, social workers, clergy, businesses, charities and carers, and others to lead a movement to record our wishes well in advance, not once a crisis is upon us.

By tapping into the compassionate community movement; marketing to the UK’s 20 million organ donors and through NHS Choices’ 20 million “unique” visitors a month; and by asking GPs to raise awareness of free online tools, we have the makings of a sustainable call to action.

Moreover, a tool already exists to bring the movement to life and give those involved something to own.

Decision making

MyDirectives is a free digital tool that is already being used by hundreds of people in the UK.

It gently takes people through 11 advance decisions, and asks them to record statements on their likes, joys and how they want to be cared for.

It then asks the user to appoint agents to speak for them and to distribute a summary of their decisions to friends, family, carers and clinicians.

‘We can use technology to help individuals, social workers, businesses, charities and carers to record our wishes in advance’

In addition, it allows users to upload video statements, documents and audio files to reinforce their thoughts. All this information can then be synchronised to Electronic Palliative Care Co-ordination System registers.

The company behind the platform believes a community movement in the UK could save the NHS between £800m and £2bn a year.

At a time when the NHS is overwhelmed and is looking at a £30m deficit, we need to encourage the public to appropriately take more responsibility.

One way is for millions of us to take just 10 minutes to think in advance how we want to be cared for to help ourselves, our loved ones and the NHS.

Jonathon Carr-Brown is a digital health consultant and the former managing director of NHS Choices. He has asked HSJ to point out MyDirectives is one of the companies he advises. As it is a free product I don’t feel there’s a conflict of interest just think it is a question of full disclosure.