Tracey Bleakley, Chief Executive of Hospice UK, writes about the importance of normalising death.
At Hospice UK we have three annual campaigns aimed at the public (Dying Matters, Open Up and Hospice Care Week). Together, and with our wider public engagement work, they are aimed at normalising death, helping people to plan better, to understand hospice care, to increase provision of hospice and palliative care and getting people to talk more openly about the subject.
Lots of other people are having similar conversations with the public. From bereaved relatives on social media, to Joan Bakewell on Radio 4 or Professor Green reaching out to younger people, the message is clear – there is a growing movement urging us to all talk more about death, dying and bereavement.
But why, and to what end? What are we collectively trying to achieve? Can we all work together?
The last big shift in our attitudes to death, dying and bereavement in this country came during the two world wars. Before this, we had more open Victorian attitudes to death where it was widely accepted and grief openly acknowledged. Death rates were much higher, life expectancy lower and medical science was far less advanced. We also had a prevalent Christian religion which promised a version of immortality to fend off fear – heaven, where families would be reunited, pain and suffering would be vanquished, and a perfect life could continue in perpetuity.
World War I changed this forever. The country couldn’t afford to be weakened due to collective mourning for a lost generation of young men. The government of the time encouraged the public to hide grief, display solidarity and ‘keep calm and carry on’. The War dead died and were buried far from home and following the War, we continued to remove death from the family home and into hospitals, hospices and funeral parlours.
We now have increasing expectations of a long and healthy life, in the ability of medical science to fend off death, and (in the increasing absence of religion), in achieving immortality through a combination of death denial and increasing NHS investment.
This proves that we can change the psyche of a nation around death. So why would we want to?
We often say that a ‘Good Death’ is a legacy for those we leave behind and that a combination of discussion, planning and good palliative care can achieve this. However, in his book ‘The Way We Die Today’, Seamus O’Mahony argues that many deaths are not (and never could be) good and that we may be pursuing an impossible dream. Certainly, many of the examples in Kathryn Mannix’s book ‘With the End in Mind’ would not be considered good – however beautifully and sensitively written. Are we setting ourselves up for failure, and worse are we creating unrealistic expectations for the public and risking increasing harm when our aim is exactly the opposite?
There is growing evidence however that more planning, awareness of the options and discussion around end of life can improve death, can make it more likely that your death is in line with your wishes (which can be a comfort to relatives) and can create the time and space needed to help people achieve their goals and make the most of the time they have. It also follows that better public engagement will drive demand for better investment in and ultimately better designed and more effective services to support people, families and communities facing terminal illness.
The problem is that thinking about death is depressing for most of us. It also (confusingly) runs counter to the ethos of hospice care, which is to focus on life and living and not dwell on the end (however inevitable). If we want the public to talk about death and dying then they need a reason to want to and it has to be more than something we know we should do (like writing a will), but that we’re going to put off for as long as possible.
That means harnessing the advocates. The family members who have been through death and dying, who want to talk about it, to make it easier for others and change a system they have found to be broken. It means engaging the just coping sandwich generation, for whom their entire coping mechanism can fall apart overnight through an elderly parent’s fall or infection, knowing that admitting an inability to cope will be regarded a failure and a dereliction of family duties. These people need the system to change and are often taken completely by surprise by the bureaucracy, lack of communication and complexity in caring for unwell, dependent relatives.
So we have an idea of why we want to achieve change, what we want to change and who might want to be involved. This is where we need more detail and it gets harder. Because much of our campaigning, our terminology and our narrative, works for people who are already part of the sector. But it isn’t clear, easy to understand or written for the average family in the UK today, which is part of the reason we are currently operating in an echo-chamber of our own voices and approval.
We’re going to need to take risks and be bold, to challenge society before we can hope for social acceptance of a new norm. We’ll have to make our language much more accessible. To achieve our aims we need a lot more straight talking about death and that means we need to speak plainly. It’s often said that the hardest newspaper to write for is a tabloid, because when you strip away the big words, terminology, metaphors and careless phrases, you really need to focus on the heart of the subject. It’s hard to write plain and simple messages in an engaging way.
I don’t think any of us have the answer yet, but I’d like to spark a conversation to find it. Many heads are better than one and if the hospice movement is good at anything, it’s solving a seemingly impossible problem. Thoughts on a postcard (or email) please!
A day of workshops and practical sessions for those planning Dying Matters events this year takes place on February 7. For more information and to book visit Kickstart your Dying Matters 2019 event