Most of us working in palliative care would like to see the stigma and taboo around death removed, for people to prepare well for death, and to ensure the people are supported during grief and loss, from their community, their culture and from services, as they see fit. But in order to realise that aspiration, we first need to understand how we got here.
If we can recognise the cultural and socioeconomic roots behind our current attitudes to, and practices around, death and dying, we can better navigate them in the present and shape them for the future.
This is the area of expertise of Allan Kellehear, Clinical Professor at the University of Vermont. In his lectures for Compassionate Communities UK, he explores how the causes of, beliefs about, and social practices around death have changed between pre-history and the current day – all of which have implications for our day-to-day practice.
For example, in the medieval period, dying people were believed to be closer to God and so, hoping to receive a divinely inspired message, dozens of people would gather around a neighbour on their deathbed.
But while historically, dying was a social experience – embedded in the communities in which someone had spent their lives – now it is a longer, lonelier experience. Rather than spending our final days at home, the majority of people in the UK die in an institution – a hospital, hospice or care home – separated from the physical and social environment which shaped them.
As a result of this separation, together with the longer life expectancies and reduced child mortality, it is much rarer for young people to be exposed to death than in previous centuries, when a child would likely see a grandparent, parent and/or sibling die. When young people do now lose a grandparent, for example, they are unlikely to be physically with them at the time of their death.
Indeed, in the mid-twentieth century, British society became what Professor Kellehear defines as ‘death-avoidant’ – adults were keen to shelter their children from the reality of death, sometimes even preventing them from going to funerals.
Around the same time, there was a similar taboo around sex – but while the sexual revolution opened up conversations about sexual health and relationships, the same unguardedness hasn’t been seen about death. “Death and dying should be thought about in the same way we think about sexual health”, Professor Kellehear explains:
“When it was difficult to get information about sex, it created a lot of fears and anxieties around people’s bodies, and how they worked, particularly around adolescence. Without clear information and without a sense of what was normal, people were often lost and made poor health decisions. Sex education, the sexual revolution and the gradual appearance of talk about sex in the media helped a whole generation become more relaxed about the normalness of each of us as sexual beings. But that journey hasn’t happened yet with death and dying.”
The partial exclusion of children from funerals points to a change in the culturally accepted expressions of grief. For most of history, mourning was a public experience – people would change their appearance or their clothing to symbolise their loss, and the dead would be collectively remembered at regular intervals. But this changed during the twentieth century so that now there is an expectation that grief can be managed privately or with the help of a professional.
Rather than there being an ongoing remembrance of the deceased, prolonged grief may be pathologised (the American Psychiatric Association, for example, recommends individuals see a grief counsellor if they are still mourning after 6 weeks).
Taken together, these trends not only shape our day-to-day activities as palliative care professionals – they are, to a large extent, responsible for the existence of our professions in the first place.
If we want, therefore, to support the public to become more comfortable talking about death, more confident in supporting the bereaved, and materially and psychologically prepared for their own death, the shape and orientation of our services will likely need radical change. Such changes are possible, and more than that, they are crucial to putting the hospice sector on a stable and sustainable footing.
Helping individual professionals and all kinds of organisations make these changes is the defining purpose of Compassionate Communities UK. So, if you want to hear more of Professor Kellehear’s insights, reserve your space on the upcoming lecture series, starting January 26, and have a look at CC-UK’s other events and training opportunities.
Florence Gildea is PR & Stories Assistant at Compassionate Communities UK