WIREDGOV

- Research reveals vast differences in diagnosis and support between groups of terminally ill patients based on arbitrary factors

- Think-tank calls on government and commissioners to level the playing field

Research published yesterday by the think-tank Demos, supported by Sue Ryder, reveals unacceptable inequalities in end of life care.

The single biggest difference is whether someone is dying from cancer – with this group receiving earlier and better diagnosis, better follow up support and dedicated help to ensure their wishes were carried out. Despite accounting for only 27% of all deaths, cancer sufferers make up around 90% of users of hospice care.   

The research is unique in that it starts from the point of view of the dying person and looks at end of life care from initial diagnosis to death. It reveals that patients and their families can encounter ‘barriers’ to good end of life care often due to arbitrary differences in how their end of life journey begins.

The report, entitled Ways and Means, highlights several other significant inequalities in end of life care including:

• Stage of diagnosis: GPs struggle to decide when someone is dying if they have complex needs or are very old, leading to last minute planning and disjointed care.
• Ethnicity: minority groups are more likely to die in hospital instead of at home, and only 37% of black patients feel they have a say in their end of life care, compared with 55% of white British patients.
• Geographic: variations in GP awareness of end of life planning and availability of equipment means discharge from hospital to die at home can depend on where you live.
• Prior social care use: people already using social care when diagnosed with a terminal illness are more likely not to be referred to much needed specialist health support, and instead have continued social care support.
• Dementia: people with dementia are at far greater risk of being hospitalised before death or dying in hospital instead of at home, as a lack of support in the community leaves carers unable to cope.

Addressing inequality                                                                                   

The report calls for a series of reforms to prevent future inequalities, so that there is no longer a ‘lottery’ based on arbitrary factors such as disease, age, background and location. To achieve this it argues for a patient-driven, personalised approach, which would give people more control over their care.

This would involve more support and training for GPs and other health professionals to talk about death and dying with patients and their families and identify different end of life care needs. A greater focus on patient choice would help to ensure that patients have vital information so they can make informed decisions about their care.

The report also finds that non-cancer patients, older people and those with less clear prognoses are often let down by delayed diagnoses and uncertainty over follow-up care, and recommends more partnership working to address this.

It argues that tackling this could help more people die in a manner of their choosing, easing the pain for the patient and their family but also reducing the number of emergency hospital admissions. In total, adult hospital admissions in the last year of life cost the NHS an estimated £1.3 billion a year.

The report comes ahead of groundbreaking work by health and social care charity Sue Ryder supported by Demos, which will explore what choice really means at the end of life, and includes original polling on people’s preferences and attitudes in terms of location and priorities.

Deputy Director of Demos, and co-author of the report, Claudia Wood said:

“These widespread and unacceptable inequalities show how accessing good quality end of life care is often hit or miss. But this is a lottery we can’t allow to continue.

“A persons’ condition, location or ethnicity should not prevent them from having a say in the care they receive at the end of life. GPs and nurses must be trained and supported to talk about death: too often the opportunity for patients to have their say is taken away due to a lack of professional confidence.".”

Paul Woodward, Chief Executive at Sue Ryder said:

“We believe that everyone should have access to the personalised and compassionate care that they want. It is a fundamental right for everybody to have choice and control over their  care and to have a good death: pain-free, in dignity and in their preferred choice of location.

“Death and the memories it leaves behind, particularly of a loved one’s last days, affects us all, which is why the inequalities revealed in this report represent a ‘wake up’ call that cannot be ignored.

“At Sue Ryder we are committed to ensuring the voices of people who need end of life care are heard. Our work with Demos is part of this commitment, and we are now focused on securing Government support for implementing the report’s recommendations.”

ENDS

NOTES TO EDITORS

The report, Ways and Means, by Claudia Wood and Ally Paget is published by Demos on Wednesday 19 June 2013.

There will be a second report to build on the findings of Ways and Means, to be released on 10 July 2013 by Sue Ryder. This second report will explore how people want to die rather than where people want to die and the implications this has on the future of end of life care.  

This research was supported by healthcare charity Sue Ryder. Sue Ryder provides incredible care for people with life-changing illness through its hospices, neurological centres, in the community and in people’s homes. Whether it’s bringing comfort to someone’s final days or enabling them to make the most of their life, Sue Ryder is there to support them and their loved ones. Sue Ryder not only provides specialist medical care to ease pain and discomfort, but also offers people and their families real emotional support that can help with the difficult and often distressing effects of long term illnesses. www.sueryder.org

For further interview or comment or to discuss the possibility of case studies please contact Rob Macpherson.

Rob Macpherson
Rob.macpherson@demos.co.uk

020 7367 6338
07809 280 643