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Do our expectations of end-of-life care reveal our lack of planning?

End of life care in the UK

Almost a quarter of a million people in the UK die in hospitals every year. In spite of this, a number of reports have found that the end-of-life care offered in some locations fails to live up to the standard that many of us would expect.

An audit carried out by the Royal College of Physicians (RCP) and Marie Curie looked at 9,302 anticipated deaths that occurred in hospital trusts across England in May, 2015. It found that only one in ten hospitals provided bedside end-of-life care 24 hours a day.

A third of patients were not assessed as to whether they needed help drinking water in their final 24 hours and only one in four patients who did not die suddenly or within 24 hours of admission had a holistic assessment made of their needs. For some, like Amanda Cheesley, the Royal College of Nursing’s professional lead on end-of-life care, this is not enough, and hospitals should be providing around-the-clock bedside care.

“An awful lot of this is about people keeping an eye on someone, hearing what they want and making sure that they get it,” she said.

Despite these challenges, it is important to highlight that palliative care in the UK is one of the best in the world. The Quality of Death Index, which looked at the end-of-life care provided by 80 countries, found that the UK was “second to none.” Amongst the criteria, the UK received a perfect score for quality of palliative care.

However, The Quality of Death Index’s report also accepted that there is still more that could be done to improve end-of-life care in the UK.

Prof Sam Ahmedzai, clinical lead for the end-of-life audit report on behalf of the RCP, agrees and believes that more medical specialists and emotional support workers for patients and families are needed.

Ahmedzai spoke of how 24-hour telephone assistance was available, but it would take a substantial investment to provide around-the-clock bedside care. “It costs money to have a rotation of five or six junior doctors, five or six consultants, on call for a population of half a million. Put that across the country, to go from the position we are in now to having 24/7 services does require a lot of new investment or reinvestment,” he said.

With all things considered, maybe these findings highlight our personal failure to plan for our own end-of-life care. Taking the time to outline our wishes can ensure that we get the care we want in the environment we wish to spend our final days.

Data collected by the National End of Life Care Intelligence Network suggests that just 7 percent of people in England want to spend their final days in a hospital, while two thirds wish to pass away at home. This disparity between where people wish to spend their final days and where they actually do supports the idea that end-of-life planning is being overlooked by many.

This is supported by the Dying Matters Coalition, whose report found that while 70 percent of those surveyed felt comfortable talking about death, only one in twenty had made an advance care plan.

An advance plan, otherwise referred to as a living will, outlines your end-of-life wishes. This can include decisions like where you wish to spend your final days, what food you would like to eat and who you wish to have around you. It can even reveal the care and medical treatment you want to receive.

More than just ensuring that those around you know your end-of-life wishes, making these arrangements can lessen the investment needed to provide a 24-hour bedside service. Ultimately, by changing the way we plan for the future, we can make our finals days and those of others pass in comfort and the way we want.

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