Dying with Dignity

This report explores how personalisation could transform end of life care. It outlines the approaches necessary to avoid the current high levels of undue hospitalisation.

 Author: Simon Duffy

Too many people die in hospital or in nursing homes rather than at home with family and friends. This is despite the fact that dying in hospital is expensive and wasteful. This report was developed with the support of Macmillan and Bill Noble, Macmillan Senior Lecturer in Palliative Medicine at the University of Sheffield.

The use of direct payments in End of Life Care is unlikely to be central to reform. Instead individual budgets (Personal Health Budgets) will be much more helpful in enabling families to design suitable support solutions at the end of life. This can be achieved with minimal bureaucracy if reforms are thoughtful and if robust partnerships are developed with primary care and community organisations.

However changing funding mechanisms, on their own, will be insufficient. In addition there needs to be important changes in leadership and culture at every stage.

GPs have a vital role to play, but so do other community organisations within our communities. Unless there is a different quality of conversation within our communities then the repeated patterns of fear and anxiety will lead to the emergency responses that undermine dignity in the final weeks and days of our lives. There is a vital role for the hospice movement and other leaders in palliative care to ensure that support systems, expertise and training are available to all, at the earliest possible moment.

The NHS focuses much of its energy on providing care and support in the very last few weeks of life. This care needs to be better directed to supporting families and communities to help people die at home, with dignity.

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The publisher is the Centre for Welfare Reform.

Dying with Dignity © Simon Duffy 2011.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.

Documents

Paper | 10.10.11

community, education, health & healthcare, social care, England, Paper

Simon Duffy

England

President of Citizen Network

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