By Dr Joseph Hawkins, Consultant in Palliative Medicine Ashford and St Peter’s NHS Foundation Trust and Woking and Sam Beare hospice. Twitter: @JoeHawk75825077
We have a lifetime to prepare for our dying and yet it seems that for most of us we still arrive ill-prepared.
As humanity has evolved we have taken advantage of our creativity to forge industry, economics, art and politics. However, when it comes to dying creativity is the last thing we need. Death is such an enormous concept that that it seems too big for us to able to conceptualise, despite the personal or professional experiences we may bring with us. To put this another way: I can list the oceans of the world and have seen a number of them but I cannot visualise a billion fish.
When discussing dying with our patients we often come up against a concept that I am going to term: ‘creative distress’; an acquired emotional and psychological pain that comes in part from the recognition of dying in the most personal sense. As professionals we persist at such discussions because we recognise that for many people the distress of ignorance is ultimately greater than that of understanding.
However, for some of my colleagues I know that they find these discussions more of a necessary but unwanted duty than a part of the therapeutic process. When talking about these discussions of prognosis and dying I frequently hear sentiments that these conversations cannot be done better, that they will always be distressing and are best analogised to tearing a plaster off an old wound. The conversation’s success, to these colleagues, is measured in the time taken to complete it rather than by the impact of the conversation on its recipients. I visualise this as similar to looking at a graph where there is a bell curve of responses to the news that one is dying- from indifference to extreme distress or denial, where the mean of this bell curve is represented by ‘some distress’. For those who hold to these conversations being necessary, but not therapeutic, the graph will always be static, their conversation cannot change the number of responses that sit in any part of the bell curve.
The NHS, NICE and various charities all agree that advance care planning is important, we have studies showing this to be true1 and yet discussing dying remains a barrier in regard to both advance care planning discussions and probably recognising dying too. Despite many excellent pieces of research looking at barriers and education around ACP discussions, discussing dying and improving skills and competency in these discussions we don’t have a true solution to this problem2,3,4.
Perhaps the greatest challenge lies in taking these conversations away from tools and formulas and instead encouraging a focus on a creative approach to the discussions being held. Each discussion may have echoes of prior consultations but will also be unique in its own way. Only by encouraging open thinking as to how to engage individual patients are we likely to get better at having these conversations and ultimately move away from the fixed graph metaphor above to one where an effective conversation can hold the power to shift the level of distress being experienced away from the end of the bell curve.
- Detering, KM, Hancock, AD, Reade, MC, Silvester, W, 2010, ‘The impact of advance care planning on enDetering, KM, Hancock, AD, Reade, MC, Silvester, W, 2010, ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’, British Medical Journal, 340: c1345.doi:10.1136d of life care in elderly patients: randomised controlled trial’, British Medical Journal, 340: c1345.doi:10.1136
- Yates, P. 2017, ‘Advance Care Planning the: The Pro’s and Cons’, Journal of Thoracic Oncology. DOI: https://doi.org/10.1016/j.jtho.2017.09.160
- Lovell, A, Yates, P. 2014, Advance care planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008-2012. 28(8), 1026-35.
- Rietjens, J, Korfage, I, Taubert, M, ‘Advance Care Planning the Future’, British Medical journal Supportive and Palliative Care. Vol.11, Issue 1. http://dx.doi.org/10.1136/bmjspcare-2020-002304