New report supports need for personalised care at the end of life

“there needs to be a shift in focus from place of death and professional led planning, to putting patients and their families at the centre of end of life care”

On the 60th anniversary of Sue Ryder providing care to those with life-changing illness, including those facing their end of life, Compassion in Dying welcomes their report findings that end-of-life care should be personalised, and that the patient should be at the centre of decisions make about their care.

The report A time and place; what people want at the end of life was commissioned to examine the relationship between where people are dying and how that affects their quality of care.  They found that people’s priorities at end of life include: being free from pain and discomfort (78%), being surrounded by loved ones (71%), privacy and dignity (53%), familiar surroundings and being in a calm and peaceful atmosphere (45% each).

The report also found that people are making compromises based on their priorities, meaning that some may choose dying at home over being pain free.  The report finds that the recent focus on dying at home has distracted from what peoples’ actual preferences are at the end of life are and concludes that end-of-life care should be personalised and based on informed patient choice.   

Danielle Hamm, Director of Compassion in Dying said:

“This report is a valuable contribution to the ongoing discussion about how we can better support people to die well, and reinforces our view that a focus on personalised care at the end of life is crucial. 

“To ensure that care really is tailored to the needs and wants of those facing the end of life we must support the provision of information about all end of life options.  Dying people must have information about their right to make an Advance Decision to refuse treatment and to appoint a Health and Welfare Lasting Power of Attorney to make decisions on their behalf if they are unable to do so.  Healthcare professionals must regularly engage with people approaching the end of their life about their values, wishes and preferences.  These preferences should be recorded in the patients advance care plan and, where appropriate, in an Advance Decision.

“There should not have to be a trade-off between having adequate pain-relief and being in familiar surroundings and with loved ones at the end of life.  We agree with Sue Ryder that in order to achieve better outcomes for people at the end of life, there needs to be a shift in focus from place of death and professional led planning, to putting patients and their families at the centre of end of life care.” 

 

 

***ENDS***

 

Note to Editors:

 

For more information please contact Jo Cartwright, Press Manager on 020 7479 7739/07725433025 or jo.cartwright@compassionindying.org.uk

 

Further information:

 

The End-of-Life Rights Information Line

 

The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by emailing info@compassionindying.org.uk or writing to Information Line, Compassion in Dying, 181 Oxford Street, London W1D 2JT.  The phone-line will be open between 11am and 3pm Monday to Friday.

 

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 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 was set up in 2007 by the campaigning organisation Dignity in Dying to take on the charitable aspects of its activities.  The two organisations now work in partnership. 

While Compassion in Dying aims to increase people’s understanding of and empowerment around existing end-of-life rights through information, research and education, Dignity in Dying campaigns to extend and defend individuals’ rights at the end of life.

For more information on Compassion in Dying visit www.compassionindying.org.uk

 

Sue Ryder

For more information on Sue Ryder go to www.sueryder.org

To read the report go to http://www.sueryder.org/About-us/Policies-and-campaigns/Our-campaigns/Dying-isnt-working/~/media/Files/About-us/A-Time-and-a-Place-Sue-Ryder.ashx