The theme for this year’s Dying Matters awareness week, which runs until the 19th May, is “are we ready?” The answer is: generally no. Despite decades of research – and hundreds if not thousands of years of well documented, but not necessarily systematically canonised folklore – we still struggle with death and its impact. We struggle as individuals, as families, as communities and as professionals. And part of the reason for this is that we try and make grief finite when it is not. Dying Matters itself, highlights that most people would prefer to hear about the death of a loved one by phone, and that the phrase “passed away” is still preferred to “died”.
We use terms such as “closure” and “healing” without acknowledging the potential serious impact bereavement can have on others. In every surgery that I do, there are patients listed with generalised descriptions listed under medical problems: “bereavement reaction; death of parent; death of partner; death of child”. Never again referenced, and forever medicalised as a problem listed within their past medical history. For every ‘Read’ code, there is an extraordinary and individual story: of the death of a child, of both parents dying within a week; of the death of a husband/wife after 5 years or 50 years of marriage. And if asked about the death, there will be an outpouring of love and loss with tears, and sometimes anger, but always a willingness to talk.
So there is life after death, just not for the dead person. But for many people it will be a different life, there will be a wave of impact for friends, families, colleagues, professionals who will experience degrees of loss, anger, heartbreak, sleeplessness, depression, reduced resistance to infection, exacerbation of their long term condition, time off work, and possibly even serious and life threatening events.
But overall the research in this area is not well developed. Add in the fact that many professionals may not have yet lived with bereavement in their personal lives, and so will not have the resilience that comes with experience, and you end up with a system that is geared to dealing with death but not what happens next. The health professionals are generally no better than the person in the street when it comes to bereavement; stock responses, leaflets, offers of counselling, desperate attempts to refer you on to someone else, and a slight feeling of panic that if you spend time with a grieving person you will end up losing a big chunk of your working day and end up stressed out yourself.
None of this is blaming. There are many good bereavement services both locally and nationally. But we need to start factoring in the fact that death is itself a long term condition. Other forms of loss can be recovered – you can remarry after a divorce, find a new place to live after homelessness, find a new job after redundancy. Death is a swiftly and silently closing door. Within a few weeks the tide of caring has receded and people are getting on with their lives. A year later, and the anniversary may be marked by a few, but by year two, you are on your own.
We are still at the beginning of the journey as an NHS when it comes to improving our response to bereavement. With our encouragement, time and more support we can help people recognise that a death is a ripple in a pond that can touch more people in more ways than we usually think. We need to start talking about death more openly and honestly, about the person who has died, and about the lives we have to live after they have gone.
Dr Claire Fuller
Senior Responsible Officer, Surrey Heartlands Integrated Care System