New research reveals people would choose to die in pain so they could spend their last few days of life at home
Findings spur Sue Ryder to call on government and commissioners to improve quality of care across the board to prevent unacceptable trade-offs at end of life.
Too many people would sacrifice pain relief in order to die at home with their family, according to a new Sue Ryder report.
The report ‘A time and a place’, commissioned from think-tank Demos, highlights that whilst 62% of people polled said they wanted to die at home and 78% said pain relief was a top priority for them, only 27% felt that home was a place where they could be pain-free during their final days.
These findings show that rather than making positive choices about end of life care, people would make unacceptable trade-offs between dying in the place of their choosing or receiving the care that they want.
Researchers also found people are much more concerned with personal and environmental factors than medical ones.
After pain relief, three-quarters of respondents emphasised the importance of being surrounded by their loved ones (71%), whilst over half treasured privacy and dignity (53%). Having familiar surroundings and being in a calm and peaceful atmosphere were both important to 45% of those polled.
The report also found:
• Two-thirds of people (67%) had experience of being with someone during their final days of life. This increased with age, from 40% of 18-24 year olds to 83% of over-65s.
• People had most commonly experienced the death of a loved one in hospital (39%), followed by at home (22%). Only 1 in 10 had experience of somebody dying in a hospice (9%).
• The difference between people experiencing someone’s death in hospital, and the percentage of people who die in hospital (58%) illustrates just how many people die alone in hospital
• A majority associated dying at home with familiar surroundings (83%) and having loved ones around (83%).
• Meanwhile, having sufficient access to medical staff (88%) and having a pain free death (87%) were most strongly associated with hospital deaths.
The research also revealed many are misinformed about their end of life choices, with stereotypes around hospices in particular acting as a barrier to fulfilling their needs.
Many respondents initially felt hospices balanced medical and personal concerns but lacked the advantages of either. However, when researchers asked the public to score locations based on attributes they valued most hospices outscored hospitals, and came a close second to dying at home – the public’s preferred choice.
Improving end of life care across all care settings
The report findings lead Sue Ryder to call for Government, NHS England and commissioners to end their obsession over where people die and instead implement a series of reforms to ensure everyone’s wishes for care are met at their end of life.
It recommends, all care settings be more flexible and offer more varied support for people and their families including services such as: hospice at home which provides specialist medical care to manage pain as well as much needed emotional support in the comfort of a person’s home, and support for families who are caring for their loved ones at home during their last few months, weeks and days of life.
The focus on where people die as opposed to how people die is skewing how services are commissioned. Sue Ryder calls for Clinical Commissioning Groups (CCGs) and Health and Wellbeing Boards to amend their end of life care targets to focus on the medical, environmental, personal and practical outcomes that are important to people instead of location alone.
The report also highlights that healthcare professionals and local authorities should receive better training on advance care planning and communication with patients and their families to ensure people have better access to information about their end of life care options and make informed choices about what suits them best.