Report shows lack of patient involvement in key decisions about their end of life care
15th May: An audit on the provision of care for terminally ill people in hospitals has found that experience varies significantly across hospitals in England. Worryingly the audit found significant variation in the quality and provision of services and training across the country, and a need for major improvement.
The report highlights poor communication between health professionals and their patients around end-of-life decision-making. Less than half (46%) of patients capable of engaging in discussions were told they were in the end stages of life and only 17% were involved in discussions about whether artificial nutrition or hydration was right for them. Doctors are far more (around twice) as likely to discuss the fact that a patient is dying with relatives, rather than the patient themselves.
This report is published within the context of a lack of direction for end-of-life care. The 2008 End of Life Care Strategy has come to an end, with nothing to replace it and with less than 8 weeks to go before the LCP is withdrawn from practice, there is no clear steer for clinicians, or information to patients, about what will replace it. We are concerned that this lack of leadership in end of life care will result in a further decline in care of the dying. It’s essential that patient wishes are placed at the centre of end-of-life care planning and that patients are involved in decisions about their care.
The recent House of Lords Inquiry exposed a shocking lack of professional and public awareness of the Mental Capacity Act – which protects patients’ rights to be involved in their care and to make legally binding Advance Decisions, ensuring that their treatment wishes are known if they lose capacity. Training in this area is essential to ensure a culture of patient-centered care.
Sarah Wootton, Chief Executive of Dignity in Dying and Compassion in Dying said:
“This is another wake-up call for improved end-of-life decision making. Patients should always be involved in decision making when they have capacity – the low rates of discussion of end-of-life treatment with patients are deeply troubling. Whilst it is important to involve families in decision making, the wishes of the patient should take priority. This cannot happen when less than half of patients capable of doing so are given the opportunity to discuss their end-of-life care and treatment options.
“The failings of the Liverpool Care Pathway (LCP) centred on poor communication. It is critical that people approaching the end of life are given the opportunity to record their wishes in advance, so that if they lose ability to communicate their wishes can be acted on. We support the recommendations made in the report and call for training for health and social care professionals on end-of-life care to include communication skills, encouraging patients to record their wishes in advance through an Advance Decision as well as appointing a Lasting Power of Attorney.”
Notes to editor:
Compassion in Dying
Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their legal rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.
Compassion in Dying is the sister organisation of Dignity in Dying and was set up to help people exercise their rights and choices under the current law.
Dignity in Dying
Dignity in Dying campaigns for greater choice, control and access to services at the end of life including the option of assisted dying for terminally ill, mentally competent adults within strict legal safeguards. Dignity in Dying has over 25,000 supporters and receives its funding entirely from donations from the public.
For more information on Compassion in Dying visit www.compassionindying.org.uk
For more information on Dignity in Dying visit www.dignityindying.org.uk
The End-of-Life Rights Information Line
The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by emailing firstname.lastname@example.org or writing to
Compassion in Dying
181 Oxford Street
The phone-line is open between 11am and 3pm Monday to Friday.
An Advance Decision is a document that allows individuals to set out their wishes and preferences for medical treatment in advance, in the event that they become unable to communicate with their health team (for example, if they fall into a coma or develop dementia). Advance Decisions were given statutory force under the Mental Capacity Act 2005 (in October 2007), meaning the refusal of treatment is legally binding. The Compassion in Dying Advance Decision is fully compliant with the Mental Capacity Act.
Free Advance Decisions are available by calling the Information Line or to download from www.compassionindying.org.uk.
Lasting Powers of Attorney
A Health and Welfare Lasting Power of Attorney (LPA) is a legal document that gives one or more trusted persons the legal power to make decisions about your health and welfare if you lose the capacity to do so yourself. An LPA cannot be used until it is registered with the Office of the Public Guardian. LPAs can make decisions for you when you lack the mental capacity to do so yourself, including the withdrawal of life-prolonging treatment.
Compassion in Dying is the only organisation to have published information for the public on the LCP and what comes next. It can be found:
The House of Lords Mental Capacity Act 2005 Select Committee post-legislative scrutiny report can be found here: http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13909.htm#a34
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