End of life care

lumber jills

Population forecasts show that pressure on our already strained end of life care system is set to increase.

Next up, it’s not the make-do-and-mend post war generation, it’s the Baby Boomers, the Woodstock generation.  These savvy senior citz will expect personalisation and choice.  They’ll be looking for stimulation not snoozing; organic produce, not corned beef hash. Old china and chintz TV rooms in care homes won’t wash.

The private sector is on the case. Government is certainly alert to the potential pressures and so are the many charities and voluntary sector organisations that support us. Care budgets are already handed over to users to spend. We’re likely to see some significant changes in the way care is provided over the coming decade.

The current route map goes something like this: prevention > easily accessible care > help at home >care home > end of life plans. Care villages are springing up across the UK that provide a route from independent living to cared-for living through a physical location – a mix of private housing and care home with public cafe and other facilities to create a village vibe.

The National Council for Palliative Care and National Care Forum have published A 2030 vision: building communities and environments to support people to live and die well.

They have called on Government to take action: see Time for Action.

The report warns that urgent action is needed to deal with demographic and social changes, including an increase in the number of people aged 60 and over, more people living longer with chronic life-limiting conditions, growing numbers of people living alone and planned increases to the state pension age.

With a growing and ageing population, it’s timely and vital that across the UK we’re looking at end of life care, asking the public what they want and setting standards for the future.

There’s lots of activity going on to ensure that the journey from life to death is one that’s thought-through, planned and full of care.

Check with government websites to get the most up-to-date information. See our blog on palliative care.

End of life care frameworks, statements, guidelines and reports

  • England: Joint Statement on improving palliative care data
    NHS England and Public Health England have released a joint statement setting out plans for improving data on palliative care.
  • Scotland: Stitch in Time project
    The Stitch in Time project is led by Evaluation Support Scotland. It looks at how the voluntary or third sector can help Reshaping Care for Older People.
  • Scotland: Scottish Palliative Care Guidelines NHS Scotland, Nov 2014
    Good practice guidelines for the care of adult patients with life limiting illness designed for healthcare professionals.
  • Scotland: Outcomes Framework for Older People
    NHS Health Scotland has developed framework designed to help older people enjoy the best quality of life at the end of life.
  • Scotland: Report on care for older people in acute hospitals
    Healthcare Improvement Scotland report on hospital inspections looking at the care of older people in acute hospitals 2013-14.
  • Once Chance to Get it Right Leadership Alliance for the Care of Dying People (LACDP), June 2014
  • More Care Less Pathway – A review of the Liverpool Care Pathway Baroness Neuberger (Chair), July 2013
  • How to Have a Good Death (video): Katherine Sleeman at Imagining Future Medicine, Jun 2014
  • Advance Care Planning The National Gold Standards Framework

End of life care consultations

  • England: Inquiry into End of Life Care
    The Health Committee is undertaking an inquiry. Written evidence is invited with a closing date of 12 December 2o14.
  • Scotland: Care of Older People in Hospital
    Healthcare Improvement Scotland has published draft standards for Care of Older People in Hospital. The closing date for consultation responses is 17 December.

Make your own end of life plans

Don’t expect the State to take all the responsibility for your end of life care. If you want to keep some element of control in your own later life, there are two key things you can do NOW.

  • Write an Advance Decision about the care you DON’T want.
  • Draw up a Power of Attorney to give someone you trust the right to take decisions on your behalf should you lose capacity.

In two minds about it? See 5 Reasons why you should make life and death decisions.

For those of us in the LGBT community, making sure we have appropriate and sensitive care at the end when we might be separated from our life partners and community of LGBT friends is critical to ensure we are treated with respect and consideration.