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Briefing 14 March 2017

Briefing on a question for short debate in the House of Lords on end of life care

In March 2017 there was a short debate in the House of Lords on end of life care. We welcomed the debate and submitted this briefing on it.

Question for Short Debate

…To ask Her Majesty’s Government how they intend to ensure that Clinical Commissioners respect the undertakings made in ‘Our Commitments to you for end of life care: The Government Response to the Review of Choice in End of Life Care’.

About Compassion in Dying

Compassion in Dying is a charity that informs people of their options for planning ahead for care and
supports them to do so through patient planning tools:

To do this, we provide free support to people to plan ahead through an Information Service and online tools, and through face-to-face outreach work in communities. We also supply training to health, care and community professionals on advance care planning.

We recently launched a public awareness campaign on planning ahead, called Make It Your Decision with 20 campaign partners which reached over 170,000 people via social media during its launch week. The campaign was also covered on ITV, Channel 5, Sky News.

There is a clear and growing need for end of life care: around 470,000 people die each year in England and this is projected to rise by 20% over the next 20 years (ONS 2016 and 2015).

Initiatives intended to meet the challenges facing the NHS and social care services may not address the ongoing need for end of life care. Only 6 of 44 Sustainability and Transformation Plans have clearly stated plans for end of life care, with 20 making only fleeting or no reference to end-of-life care.

Background to the debate

The Review of Choice in End of Life Care

The Government commissioned the Review of Choice in End of Life Care in July 2014 to provide independent advice on improving the quality and experience of care for adults at the end of life, their carers and others who are important to them, by expanding choice.

The Review board published its report ‘What’s important to me’ in February 2015. This recommended that:

The Government Response to the Review of Choice in End of Life Care

Government issued its response to the Review, ‘Our Commitment to you for end of life care’, in July 2016. In it, the Government pledges that people will be given opportunities and support to:

In addition, the Government’s response gave commitments that:

Learning from Compassion in Dying’s services

Public and professional awareness of advance care planning

Enabling patients to make informed choices about their future care and treatment is at the core of the Government’s Commitment. However, there is still a long way to go in educating the public and professionals about the rights we all have to plan our care in advance:

Benefits of planning ahead

It is vital that the Government and clinical commissioners support work by the voluntary sector to provide information and support to the public on how they can exercise choice in their end of life care. Doing so would both improve people’s experience of end of life care, and in doing so, reduce pressure on hospitals by reducing unnecessary emergency admissions.

Whilst structural and planning changes are needed, we could go a long way towards enabling more patient choice by simply asking dying people what they want. The surgeon, writer and 2014 BBC Reith lecturer, Atul Gawande has commented:

“We need to recognise that dying people have other priorities apart from living longer. It turns out the best way to find out people’s priorities is to ask them… When people did have those conversations they were less likely to choose intervention, less likely to suffer and less likely to die in hospital. And they lived as long or longer than those having desperate medical interventions at the end of life.”

Atul Gawande

Research shows that advance care planning results in:

Better person-centred care. People who have completed an advance care plan have earlier access to palliative care, receive care and treatment that is more closely aligned with their preferences and are more likely to die in the place of their choice.

Improved relationships and communication between families and healthcare professionals. Having early conversations about preferences and creating an advance care plan helps build relationships and reduces conflict within families and between families and staff. Family members of people with an advance care plan also have a more positive bereavement process.

Reduced costs for healthcare providers. Advance care planning is associated with fewer hospital admissions in the later part of life, fewer hospital deaths and fewer interventions of limited clinical value.

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