Surron E, Coast J (2012) ‘Choice is a small word with a huge meaning’: autonomy and decision making at the end of life Policy & Politics (40)2:211-26
A research paper which explores people’s preferences during the dying process was recently published in Policy & Politics journal. 23 participants, aged over 65 (a mixture of ‘well’ general public, people living in residential care and patients in receipt of palliative care), were interviewed.
The research found that Advance Decisions were rarely raised by participants, indicating that perhaps these matters are not as important to individuals as where will they be cared for when they die, ensuring that they are with family and friends and can actively take part in life until the end. If they did document preferences, they were more likely to be concerned with funeral and financial arrangements. Some had discussed their preferences with friends and family, but had not recorded them.
When Advance Decisions were raised, some participants said they were a good idea but that they were unsure how to go about finding them (e.g. can you get them off the internet?). There was also confusion between Advance Decisions and Lasting Power of Attorney (LPA) and how they are actioned by healthcare professionals, as well as emphasis on involving loved ones in any decisions made.
What this research tells us is that the Advance Decisions are still relatively unknown amongst the public, that when preferences for end-of-life care are discussed they are not formally recorded and that people still place loved-ones at the centre of decision making processes. As recent research by Demos and Sue Ryder indicates, recording your preferences is vital to ensure they can be acted upon. Simply telling a loved one or a care professional will not guarantee this. Advance Decisions, LPAs and Advance Care Planning need to be brought into conversation by more care professionals (perhaps targeting GPs) in order that we might have the kind of deaths we want.
Philip Satherley, Compassion in Dying