Recent research from the think-tank Demos, supported by Sue Ryder, has revealed 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 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.
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.
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