When it comes to talking about death, we have no shortage of euphemisms. This is perhaps most famously illustrated in Monty Python’s 1971 Dead Parrot Sketch. A pet store employee urges a customer that his new parrot “is not dead, but rest, stunned, pining for the fjords, on his back.” shivering, tired and starving after a long scream”. The customer responds: “It’s an ex-parrot, passed away, went to the choir invisibly, pushing the daisies up, passed away, passed on, is no more, has ceased to exist. It has expired and gone to see its maker, bereft of life, dead parrot resting in peace.”
Talking openly about death – and dying – can be difficult. People who have cared for someone who is dying feel that they have an easier time coping with this behavior. Their experience helps them overcome the barriers that so many of us feel.
Talking about death, dying and loss is an important aspect of what psychologists and palliative care specialists call “death literacy.” This is the practical know-how about accessing, understanding and making informed choices about end-of-life and death care options. It directly shapes the decisions we make about the care we receive and our ability to care for others.
The results of the 2021 UK census show that there is a higher proportion of older people in our society than in previous decades. With an aging population, of course, comes a higher number of deaths and greater strain on the health care system.
Why don’t we talk about death?
We conducted an online survey in 2019, asking 381 adults in Northern Ireland what prevents them from talking more about death and dying.
We found that people feel ill-equipped to talk about death. When they talk to someone else about that person’s situation, they worry that they might be saying the wrong thing, or that they won’t be able to help that person navigate the emotions these discussions provoke. As one woman put it:
Sometimes you want to avoid upsetting someone, even though you know it would be good for them to talk
Conversely, when asked what would encourage them to talk more about death and dying, one young woman suggested:
When you compare the polarity, between birth and death, of how much it’s recognized, it’s bizarre. Death is just as big a part of life… If we could all embrace it and give it a sense of community and camaraderie, it wouldn’t be so dark and scary.
What is Death Literacy?
In 2021 we surveyed 8,077 adults in the UK. Our results showed that in their final days of life, the top priorities for most people were to be free from pain and other symptoms, to be in the company of loved ones, and to maintain dignity and respect. Despite this, most indicated that they had not spoken to anyone about their wishes.
We know that as people’s health deteriorate, there is a risk that they will lose the ability to make important decisions about their end-of-life and death care. Being able to express your opinion in advance is therefore crucial.
There are several aspects to enabling people to be death literate. Talking about death is important, but people also need different skills and knowledge to provide practical support around end-of-life and death.
We have found that people in the UK often do not know how to navigate the health system at the end of life or at funerals for themselves or others. Nearly half of the UK respondents we spoke to said they did not know where to find information about end-of-life care planning. And more than half of the people we surveyed didn’t know where to find grief counseling.
Public health specialists, including UK charity Compassionate Communities, are increasingly recognizing that death, dying and loss are both central and inseparable from the social context. In other words, they don’t happen in a vacuum. They are, as public health sociologist Prof. Allan Kellehear reminds us, “everyone’s responsibility.”
Anyone who is either approaching the end of life, or caring for a dying or grieving the loss of a loved one, needs support. And the UK’s new public health approach to end-of-life care argues that this support is best provided by caregivers working with death literate communities of family, friends and neighbours.
Researchers predict that by 2040, most deaths will occur at home or in care homes. Empowering people to advocate for their own end-of-life care and those around them has never been more important.