Death and dying needs greater public health focus
Dr Rammya Mathew is an Academic Clinical Fellow in General Practice. She balances her clinical work as a GP registrar with her interests in research, medical education and scientific writing. Rammya is currently undertaking a Research MSc in Public Health and Primary Care. In an exclusive blog for us, she explains why a greater public health focus on advance care planning would benefit us all.
It might come as a shock to hear that research indicates approximately 70% of people who are approaching the end of life find they are unable to make healthcare decisions for themselves. This leaves families and care professionals in a messy and often unwanted situation in which they have to shoulder the burden of responsibility for decision-making in the last days, weeks or even months of life.
When the decision is placed into the hands of someone else, the evidence is that they are likely to persevere with medical investigations and interventions for longer than the person themselves may have opted for. A recent report by the British Medical Association found that doctors are guilty of pursuing aggressive, non-beneficial attempts to prolong life which, at times, come at the expense of achieving comfort and dignity in dying.
Advance care planning has been proposed as a plausible remedy for managing uncertainty around end of life care. It is the process whereby individuals discuss, and ideally document, their preferences for the type of care they wish to receive should they lose capacity or find themselves unable to express their preferences in the future. It can be undertaken by anyone. Despite this, the adoption of advance care planning has been minimal; in a survey of more than 2,000 British adults on their attitudes to dying commissioned by Dying Matters, only 7% said they had set out how they would want to be cared for at the end of life in the event that they were unable to make decisions themselves**.
So why are the British public not embracing advance care planning? Traditionally, death and dying have been considered as culturally taboo. Rightly or wrongly, the patient doesn’t bring it up and so the doctor doesn’t either. Geoffrey Rose, a former public health epidemiologist, said: "Doctors are uncomfortable about intervening in a situation where their help was not asked for." This was in reference to health promotion, so you can imagine how much more applicable it might be when it comes to talking about death and dying. Efforts to increase consumer demand for advance care planning are therefore likely to play a pivotal role in opening up discussions about preparing for the end of life.
Large scale public health campaigns may be the missing piece of the puzzle. Done well, they have the potential to shift attitudes and make us as a nation more forthcoming about talking about and preparing for death. It is virtually impossible to have an interaction with the healthcare system without being bombarded with information about screening, vaccination, smoking cessation and so on. It raises the question of why advance care planning has not been given the same attention as other public health efforts. With an almost universal target audience, it makes its own case for future investment.
Of course, there will always be the skeptics. I imagine that there will be a group of people who find it distasteful to see widespread promotional material about death and dying. But over the years we have accepted that it is okay to brandish ghastly images of cancer-infested lungs on the back of a cigarette packet, so one would assume that, comparatively, this would not be a step too far.
I am pleased to say that May 9-15 gives rise to Dying Matters' annual Awareness Week, which aims to get the big conversations going around death and dying. It is the seventh year this initiative will be running and year-on-year the event is growing in both size and impact. This is a testament to the great work done in this area by many third sector organisations. It is hopefully also a sign of changing attitudes and an increasing willingness to engage in difficult conversations around death and dying. However, the figures show that there is still a lot of work to be done in this area. A greater public health focus on advance care planning is needed in order to achieve the end goal, which is that people die in their place of choice and receive the end of life care that they wish for.
** ComRes survey for Dying Matters on 2,016 GB adults, April 2015.