It can be difficult to think about death
Thinking about death isn't easy - either our own or that of those closest to us - nor is starting conversations about what we hope for.
Many people want to be in control of certain medical decisions during end of life care, Ali Hawker, Senior Evidence Manager, writes.
So, putting the right building blocks in place is important. Thinking and talking about these issues is a good start; but formal steps can provide more assurance and clarity for people and practitioners. These range from an ‘advance decision’ (a legal record of decisions to refuse certain treatments) or an advance statement (non-enforceable steer); to arranging ‘power of attorney’, so a relative can take certain decisions on behalf of a patient.
At the moment, only 4% of people in England and 2% in Wales have made an advance decision. People may actively choose not to take one out. But there are many who aren’t aware of or informed on their legal options, as well as an unfortunate but common misconception that relatives can have final say in a patient’s treatment decisions, if they have lost capacity to do so.
One person who has been tackling these issues in her own community is Susan Hannis. She trained as a Soul Midwife in 2013 after becoming increasingly convinced of the importance of a good death, and interested in ways of enabling her own. Then following Death Café events in her area and a growing local interest in talking about death, Susan invited a small group to her living room to share their experiences of death, and to research questions together. In this informal context, she shared her own process of writing a ‘Living Will’ (involving several aspects of end of life planning) and the group worked out how they wanted to approach these issues themselves.
This all became bigger than she imagined; she soon had a large waiting list. The first group met five times, and a further three different groups followed this. Each supported each other in unpicking preferences, having conversations with relatives and – where people wanted to – putting legal structures in place. Within the mix of different interests, the common theme has been frank conversation in an informal, confidential and safe environment, with the help of greater knowledge and networks to take things further if people want to. Recently, a funeral director talked to around 20 interested members and answered questions. It’s planned for a solicitor, a doctor and a hospice worker to do the same.
Susan emphasised that not everyone wants to set up legal processes: “you can’t do it in the wrong state or for the wrong reasons”. Research also suggests a mix of preferences on taking early decisions for later life care. But feedback from groups suggested that even having these conversations has helped people. For some it opened up the need to resolve family difficulties, or to be honest about their beliefs. Others realised they had too much baggage around the subject to face it now, while some wrote out a full funeral service. Susan’s personal belief is that getting your practical and emotional affairs in order can help you approach death with a quiet mind; and in particular, stories of good or painful deaths as told by those accompanying the dying make a deep impression on us.
Many people think that the taboo around death is lessening. In a recent poll, 64% agreed that it “it is more acceptable to talk about dying, death and bereavement now than it was 10 years ago”. International initiatives like Death Café are bringing informal conversations about death into towns and cities across the world and individuals like Susan are opening up personal and practical conversations. Informal groups are great at breaking down taboos; but in reaching a wider number of people, health and other professionals also have a key role in initiating conversations about end of life care decisions. Age UK have launched some helpful guidance on preparing for end of life, but the recent Government response to the End of Life Care Committee acknowledged that for public awareness, “there remains significant work to be done”.
The Centre for Ageing Better is also scoping a wider piece of work on planning and preparing for later life. If you would like to share your experiences, evidence or ideas with us, please do get in touch with [email protected]