The Blog

Why Is Choice in End of Life Care So Elusive?


Choice has become the mantra and the mode of modern daily life.

When it comes to personal preferences, whether it concerns Starbucks or schools, these days most of us expect to be able to freely choose from a range of options which we can match with our individual needs and wishes.

So why is choice about the care we receive at the end of life and where we will die the glaring exception?

It is an unavoidable fact that each of us will die one day. Everyone aspires to a "good death" - either for themselves or for their loved ones.

That is to die a peaceful and dignified death, surrounded by those close to them and ideally in their own home, in a care home or hospice.

Hospices are renowned for the high quality care they offer and provide a diverse array of services, providing vital support in hospice in-patient units, people's own homes and through daycare services.

Hospices are also working closely with other providers such as hospitals and care homes to improve the quality of palliative care in these settings.

However, the reality is that today not everybody gets the quality of care that they should expect, and many people find themselves in a hospital bed at the end of life.

Over the last 50 years there has been an increasing medicalisation of dying that has sought to remove death from our everyday experience.

The medical dramas on television also reinforce a view that death can be avoided by aggressive medical interventions.

This hospital-centric approach has effectively constrained options for end of life care, often meaning that choice and meeting people's preferences over where they prefer to die is a more of a luxury, than the norm.

This is something that Hospice UK and other leading end of life care charities are seeking to change and increase dying people's choice and control over the care they receive.

In 2014 the Government commissioned an independent review of Choice in End of Life Care (also known as the Choice Review).

The report, which was published in February 2015, set out proposals for how end of life care services could be reformed to give people greater choice and higher quality support at the end of life.

At the time the Government welcomed the Choice Review, but one year on we are still awaiting for it to announce what steps it will take to improve people's choice and quality of care.

Hospice UK is part of the End of Life Coalition - a group of seven charities that is campaigning to highlight the lack of choice and quality of care available to dying people and their families.

We, along with the other members of the coalition, are urging the Government to take action to support better end of life care for everyone who needs it.

The UK leads the world in developing comprehensive and holistic care for people whose lives are coming to an end, largely thanks to its thriving hospice sector. Yet provision of end-of-life care remains very variable and sometimes can be dependent on someone's postcode.

Creating greater choice in end of life care in the coming decades is imperative.

This is not choice for choice's sake, it is also fast becoming an economic necessity.

As NHS finances come under increasing pressure and with the current high demand on A&E departments and substantial growing care needs of the UK's ageing population, our society must look at options beyond hospital.

Keeping people in hospital is expensive, and community-based care, as well as being more in line with people's general preferences and better for dying people and their families, is a far better use of the finite resources that are available.

There is no one-solution-fits-all approach for the vast majority of services offered in our diverse, modern society.

Where we are cared for before we die should not be any different.

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