Principal Investigator: Dr Stephen Barclay
Lead institution: University of Cambridge
Award amount: £221,705 over 3 years
Dr Stephen Barclay
This grant was awarded in 2013 and the project has recently published some interesting results, which have been published in PLOS ONE.
The study found that:
- one in six people believe that measures must be taken to sustain life at any cost even when a patient is in the final stages of an illness such as dementia.
- However, more than twice as many people would request measures to enable them to die peacefully at this stage.
The researchers say this highlights the challenges faced by those providing care and by legislators.
The team worked with a polling company, Ipsos MORI, and developed a six-stage vignette featuring a fictitious person living in a care home whose abilities in both decision-making capacity and swallowing are declining. In the final stage, the person is bed bound, unable to swallow, spends most of their time asleep and has no capacity to make decisions about their care.
Around 2,000 people were surveyed – just over half in the USA, using an online survey, and the remainder in the UK via face-to-face interviews. They were asked to choose between four care preferences: sustain life by using any means necessary, including forced feeding and deprivation of liberty; encourage, but not impose, nutrition and hydration by tube or other means; no intervention for artificial nutrition and hydration, but continuation of oral nutrition and hydration as far as possible; and provide measures to help peaceful death.
“Debate surrounding assisted dying goes to the heart of clinical ethical principles,” says Dr Gemma Clarke from the Department of Public Health and Primary Care at the University of Cambridge. “Some argue that for a doctor to assist a patient to die is fundamentally inconsistent with their professional role, while others say that delaying death could increase unnecessary physical and psychological suffering, and that patients should have the right to autonomy over their own bodies.”
“This is clearly a very complex issue, and surveys of public opinion haven’t always reflected the nuances of peoples’ views,” says senior author Dr Stephen Barclay (pictured). “The challenge for legislators is to enact legal frameworks that enable these diverse views and preferences to be respected. The challenge for health and social care professionals is to ensure optimal palliative and end of life care provision for all, in accordance with their wishes and preferences.”
Other co-applicants are: Professor Anthony Holland, Professor John O’Brien, Dr Duncan Forsyth, Dr James Rowe, Dr Elizabeth Firstein, Dr Rachel Boulton, Dr Gemma Clarke, Ms Nicola Mclean and Mr Bryn Smith