23 June 2008
Major gap between reality and expectations for care of dying, poll reveals
Former Minister for Health Reform warns of failure to meet public expectation
Today, a new poll commissioned by Dignity in Dying has exposed major discrepancies between public expectation of end-of-life care and the choices they will actually have.
Dignity in Dying today launch their Charter for Dignity at the End of Life, which is being supported by the former Minister for Health Reform, Lord Norman Warner, and comes ahead of the publication of the Government’s End of Life Care Strategy. The Charter exposes a ‘looming crisis’ in end-of-life care and calls for significant changes to be made.
With more than half of hospital complaints being about end-of-life care, the Dignity in Dying poll reveals:
– 86% of respondents believe those suffering from a terminal illness should be able to exercise choice over their care at the time of death – this was rated as more important than choices at the time of giving birth.
– 79% believe it is important not to have their lives prolonged against their wishes
– Two thirds of respondents think they would be more likely to have a dignified death if they could discuss and record their wishes around care and treatment at the end of their lives
– Over a quarter of people over 65 have never discussed their end-of-life wishes with anyone
– Only 8% of over 65s have discussed their end-of-life wishes with a doctor
– Following the death of a loved one, 89% said that practical support for legal and financial matters is important – making this more important than bereavement counselling and emotional support, which 77% rated as important.
– 90% of people rate good quality care as the most important factor in having a dignified death
– 72% of people are shocked that palliative care is only routinely available to cancer patients, and not to those with other terminal illnesses.
Lord Warner said:
“Choice and personalisation are central to the current debate about the future of the NHS and social care. What matters most for those who are dying is the quality of those remaining months or weeks, dignity at the time of death and support for those who care for them.”
“The Charter places patient choice, access to services and personal control at the heart of improvements to end-of-life care. Unless there is a fundamental shift in how services at the end of life are managed and delivered, we will fail to meet people’s legitimate expectations of greater choice at the end of life.”
The Charter for Dignity at the End of Life sets out ten steps for improving end-of-life care services. Among these are:
– Increased awareness and prominence of Advance Decisions and End-of-Life Care Plans
– More support and benefits to carers in the form of a Carer’s Benefit, to be introduced for all those providing 35 or more hours of care per week
– Ensuring health professionals duty to carefully consider patients wishes as set out in their End-of-Life Care Plans and Advance Decisions
– Registering Advance Decisions on a central national health register
– Giving terminally ill, mentally competent people the right to choose an assisted death
– Making more resources available for palliative care – the Government must deliver on its manifesto commitment to double funding for palliative care
– Ending the postcode lottery in accessing palliative care
– Enabling health and social care professionals access to training on end-of-life issues
– Easy access to advice services for those who are bereaved
Sarah Wootton, Chief Executive of Dignity in Dying, said:
“We want to see end-of-life services that are sensitive, responsive and accessible to all. Individuals need to be clear about their wishes, whilst Government must ensure that services meet people’s needs at death, putting choice, control and access at the centre of end-of-life care.”
The Charter for Dignity at the End of Life can be downloaded here.
About Lord Norman Warner
Rt Hon Lord Warner was made a life Peer in 1998. Between 2003 and 2006 he served as a Minister in the Department of Health, first as Parliamentary Under Secretary of State and then in 2005 as Minister of State for Reform.
Prior to his appointment to the Department of Health, Lord Warner was the Chair of the Youth Justice Board for England and Wales. Lord Warner has extensive experience in health and social care. In the course of his career has served as the Director of Social Services at Kent County Council, was the Senior Policy Adviser to the Home Secretary, chaired the Home Secretary’s Youth Justice Task Force, and was the Principal Private Secretary to the Secretary of State for Social Services during the mid-1970s. Lord Warner also chaired the National Inquiry into Selection, Development and Management of Staff in Children’s Homes in 1992.
About Dignity in Dying
Dignity in Dying is the leading organisation in the UK that promotes and campaigns for greater patient choice at the end of life.
The organisation is the country’s leading provider of Advanced Decisions (formerly known as Living Wills).
Dignity in Dying has over 100,000 supporters and receives its funding entirely from donations from the public.
About the poll
ICM interviewed a random sample of 1002 adults aged 18+ by telephone between 21st – 22nd May 2008. Surveys were conducted across the country and the results have been weighted to the profile of all adults. ICM is a member of the British Polling Councsil and abides by its rules. Further information at http://www.icmresearch.co.uk/
About the Charter for Dignity at the End of Life
The Charter for Dignity at the End of Life is calling for choice, control and access to be at the heart of improvements to end-of-life care.
Control and choice are the foundations of a dignified death. People increasingly want to exercise choice about how and where they die. End-of-Life Care Plans enable people to express their needs and wishes for care at the end of life and Advance Decisions allow people to exercise control about future treatment. High quality palliative care needs to be tailored to individual needs.
Dignity in Dying strongly supports good quality palliative care but also believes that in order to achieve real choice at the end of life, the option of a medically assisted death is to be considered as one of the options available to terminally ill, mentally competent people, alongside access to good palliative care. Although only a minority of terminally ill people would exercise the right to an assisted death, many will take comfort in having this choice. At Dignity in Dying we believe that assisted dying forms part of a wider debate around choice at the end of life. That is why the Charter includes this call.
The ten Charter calls are:
1. Everyone should have the opportunity to create an End-of-Life Care Plan setting out their needs and wishes for the end of life, and should have access to good advice services to inform their choices
2. Health professionals should have a duty to carefully consider people’s wishes as set out in their End-of-Life Care Plan, such as their preferred place of care at the end of life
3. Government should promote awareness of Advance Decisions so that everyone knows that they have a legal right to refuse treatment
4. Advance Decisions must be recorded in a central national health register so that health professionals can take them into account in treatment
5. Building on the principles of choice and control at the end of life, Parliament must give terminally ill, mentally competent people the right to have an assisted death
6. More resources should be made available for palliative care – Government must deliver on its manifesto commitment to double funding for palliative care and all political parties should pledge to match this investment
7. Decision makers should end the postcode lottery in accessing palliative care services by providing a consistent and transparent system for commissioning services
8. Carers of terminally ill people should receive more support with a Carers Benefit introduced for all those providing 35 or more hours of care per week regardless of age; legal protection against employment discrimination for carrying out a caring role; and better access to respite care
9. Health and social care professionals should have access to training on end-of-life issues including offering emotional, psychological and spiritual support to patients; communication skills and high-quality bereavement skills
10. Bereaved people should have easy access to advice services offering first point of call assistance to other support such as legal and financial advice and referral to counselling services, as appropriate
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