It is never too early for you to find the time to relay your wishes about what you would like to have happen at the end of your life, invites Reverend Eric J Hall in his article Health Care Decision Day: A Multi-faith Message for Spiritual Leaders and Communities for the New York Academy of Medicine in relation to USA National Health Care Decisions Day 2016.
This initiative aims to engage the public of the USA to educate themselves and take action, but the UK is not left behind. Similar campaigns and supporting materials exist in the UK too, for example on the Macmillan Cancer Support website, making this a great opportunity to think and talk about what we understand about advance care planning.
End of life care is incredibly personal and it isn’t everyone’s choice to contemplate the details of it well in advance. While it may never be too early to talk about, think about, or prepare for death and the end of life, even those who wish to do so may find it extremely difficult to actually plan for all possible eventualities.
Writing detailed medical plans is still emphasised as the outcome measure of success for advance care planning, despite the literature having challenged this since 1998. Singer et al refer to this in their 1998 article Reconceptualizing advance care planning from the patient’s perspective.
With an accumulation of evidence supporting this, advance care planning still can’t seem to fully adapt to the notion of being primarily a relational, social process for individuals. Maybe this is due to other, more social measures of success seeming too intangible to be incorporated into policy statements.
For this reason alone it is encouraging to see increasing public awareness and willingness to discuss the issue, as this may be the only way to truly shift the emphasis towards the social process that surrounds preparing for death.
My interest in the topic comes from my current work as a PhD student at the University of Glasgow, in which I am exploring the measures of uptake and success of advance care planning in the Scottish region of Dumfries and Galloway.
On beginning my research into advance care planning, I was struck by a paradox in the supporting materials available online.
For a concept that champions autonomy and control, there is a great focus on preparing health care professionals to have ‘the conversation’ instead of supporting individuals and their surrogates directly. It is always stressed that identifying wishes, values, and goals comes first, and the connection to medical details second. This first part requires individual contemplation and discussion with family and cannot be achieved solely in a medical consultation.
Despite the longer history of advance care planning, sites which provide support and guidance, or even just the opportunity to contemplate death and dying for individuals, have only recently appeared online and in other places.
One of these places are death cafés. They are currently spreading across the UK and beyond, providing an informal cosy atmosphere that gives people the go ahead to speak of anything and everything related to death and dying. Although initially an intimidating thought, sometimes it really can be easiest to speak to complete strangers first.
The Glasgow End of Life Studies Group is planning academic research into the death café phenomenon, and has organised several death cafés as public engagement activities in the local community. I’ve attended a few and was struck by how versatile the conversations can be and by how evident the need is to have a setting that passes no judgment on talking about these otherwise socially taboo topics.
Other initiatives can be found on blogs, such as Max Neill’s People Thinking Action. His insights and ideas have supported many others to open up about their ‘death plans’.
In the USA, Rebecca Sudore and her team created PREPARE, an individualised website that aims to prepare nursing home residents for decision-making at the end of life. You can read about it in their 2012 article A Novel Website to Prepare Diverse Older Adults for Decision Making and Advance Care Planning: A Pilot Study.
Changing the public attitude about talking about death and dying is key. It can support and be supported by literature and policy that acknowledges that while helpful, advance care planning is not just about detailed medicalised plans.
As Reverend Hall states, it is most of all about having conversations expressing your wishes, values, goals, and priorities, and this can be a measure of success in and of itself as it will help prepare you and those important to you for making decisions with health care professionals no matter what the future context may be.