Death is inevitable. But for many it remains the last taboo. Modern medicine means we can prolong life like never before. Assisted dying legislation currently before Parliament may mean – in special circumstances – we can control death like never before.
Health Central’s Death series will explore the health aspects of death & dying in New Zealand. This is the third of eight in-depth feature and opinion articles.
This morning I tried to talk about death with my seven-year-old daughter. I tried to make it a normal conversation – after all, is there anything else as normal and inevitable as death? But it was an uncomfortable conversation, with awkward silences, burning cheeks and shrill tones.
Short though her life may be, my daughter has experience of death and dying. She has seen her great-grandfather dying. She has experienced the untimely loss of her baby cousin and the profound grief that followed. She has been to funerals, visited gravesites.
And yet we – mother and daughter – couldn’t talk about death, even in the abstract.
Is death still a taboo subject?
Our awkward conversation is mirrored by society’s reluctance to openly talk about the d-word.
Professor Heather McLeod believes this is a hangover from the “silent generation”, those now in their eighties and nineties, who generally conformed to social norms their whole lives and have learned not to question things or address uncomfortable topics, like death.
Things are changing, however. McLeod says the baby boomers, those now in their sixties and seventies, have instigated change at every phase of their lives. Maternity services became midwife-led, marriages took place outside of churches – and now, as they approach old age, baby boomers will want to change that too.
“I think any change in how we approach death and dying will be led by the baby boomers. They’re beginning to talk about it. They’re watching their parents die and they don’t like what they see,” says McLeod.
McLeod says there are signs that things are changing. The current debate on assisted dying legislation is the obvious example. She says social media has also helped to open discussion around death and grief.
The arrival of the international Soul Midwifery movement is evidence change is afoot. The movement is all about helping a dying person, in a non-medical and holistic way, to experience the death he or she wants.
Another example can be found in the international Death Café initiative, where “people drink tea, eat cake and discuss death with the aim to increase awareness of death to help people make the most of their (finite) lives”.
However, despite progress on these fronts, attitudes can be slow to change, especially when compounded by other factors.
Take the media’s approach to death, for example. McLeod points out that newspapers frequently report on tragic, untimely deaths, yet rarely discuss how death happens most commonly – in old age. She says video games that see figures killed and then returned to life can confuse perceptions as well.
Jenny McIntosh from Skylight agrees.
“Young children don’t always understand the permanence of death. TV and other media don’t always portray a realistic picture,” says McIntosh.
McIntosh is Resource Centre coordinator for Skylight, a national not-for-profit trust that enables children, young people, their families/whānau, and friends to navigate through times of trauma, loss, and grief by building resilience.
McIntosh says that as a society we have become removed from many aspects related to ageing, death and dying.
“Our elderly are often in old people’s homes or retirement villages, whereas they used to be much more within the wider family as they grew older, either in the same home or in a ‘granny flat’ and this enabled children and young people to see much more of them and view the process of ageing and dying,” says McIntosh.
“If children and young people live in the city, they don’t see the wider context of birth, living, and death that happens in nature and on farms with animals. It is helpful if they know there is a life cycle and that everything living will age (mature) and die at some point. Children who are somewhat prepared for the loss of a pet or grandparent may have a less complicated grief period.”
Considering the hand-me-down attitudes towards death, compounded by media skew, social and demographic change, and conflicting religious and secular beliefs – there is little wonder we don’t feel comfortable with the topic, let alone our young people.
Let’s talk about death, baby
Experts say this needs to change, that we need to change the way we approach the subjects of death and dying. Some advocate that this needs to start at school.
A typical Kiwi education helps prepare children for all kinds of possibilities in life – but is it equipping them for the one big certainty: death? These days kids learn all manner of things, from core curriculum subjects to things like healthy eating, sustainability, and keeping themselves safe. But are we doing a good job at preparing them for the inevitability of ageing and death?
Many teachers would baulk at the idea of broaching subjects like death, dying and ageing in their classrooms. Yet across the Tasman, there is a push for death education in schools.
Australian Medical Association (AMA) Queensland says young people need to be educated about medical, legal and other issues that surround ageing and dying so they are capable of making informed choices when the time comes. This includes understanding advance care plans and how to make a will.
Death education would help prevent young people from adopting their parents’ anxieties and concerns about the issue, Dr Richard Kidd, AMA Queensland chair of general practice told Australian INsite.
“In many families, death is a bit of a taboo topic that only gets discussed at crisis points. Death education at school would help remove any stigma.”
Palliative Care Queensland chief executive Shyla Mills said death education in schools would also assist young people to become more resilient about loss, ageing, dying and grief.
“They will be far more likely to be involved in the dying process of their relatives, work colleagues and friends than previous generations,” Mills told Australian INsite. “They will need to be very resilient, more compassionate and develop a positive, proactive approach to death.
“While there is pressure on educators to add more material into the school curriculum, death is our only 100 per cent guarantee in life and the effects of our ageing population will be felt most by those at school today.”
What would death education look like in Kiwi schools?
The mood for change is much the same in New Zealand.
Hospice New Zealand feels strongly that, as a nation, we would benefit hugely from talking more about death and dying, and this includes with children.
“It seems that in many cases, we’ve forgotten how to talk about it or we don’t want to, and that often creates a lot of worry and misinformation,” says Hospice NZ chief executive Mary Schumacher.
“There’s a fear of the unknown, misunderstandings about what happens when someone dies, and a lack of information about what care people can choose.”
“Parents and caregivers may want to protect their children from the grief associated with death, or they don’t know how to talk about it themselves. But death is a natural and guaranteed part of life. It’s going to happen to all of us, so the best things we can do is talk about it and prepare for it, know where to get help, and try not to worry.”
Life Education Trust chief executive John O’Connell says grief, loss and change is captured in their wider teaching around resilience support needed by children. He adds that such topics can be covered at the request of a teacher.
“We undertake a shared planning process with each school, so a teacher might identify grief as a specific issue because of something that has occurred.”
He says children’s understanding will be aided by their own life experiences.
“I would imagine in those primary schools years in particular, most children will have experienced loss or the impact of ageing through a grandparent’s death or some other impact ageing consequence such as a stroke… Even the loss of a pet can be significant in terms of how a child processes death.”
Skylight’s Jenny McIntosh says the language used in talking about death is important.
“We need to teach children correct terminology and explain death in straightforward and honest terms.
“Words such as ‘gone to sleep’, ‘passed on’ or ‘gone to a better place’ are confusing for children and may lead to fear of sleeping.”
McIntosh says it could help to widen children’s view of death by talking about what happens in different cultures.
“It may even be helpful to have education for young people around different religion’s rituals and how to approach bereaved people when a death occurs. Most of us don’t know a lot about protocol at a tangi for instance.”
Breaking down intergenerational barriers
McIntosh believes there is more we could do to break down intergenerational barriers as well.
“As people age, they sometimes become more restricted in what they can do, or may have health issues such as strokes – giving tips about how to relate to older people could help intergenerational relationships,” says McIntosh.
“There is often a fear between teens and the elderly which goes both ways. Understanding each other’s fears may lead to enriched relationships.”
Certainly, intergenerational projects between schools and rest homes have proven successful.
For example, a collaboration between Oceania’s St John’s Wood Rest Home in Taupo and their local kindergarten was hugely successful. The ‘Grandfriends’ programme earned the rest home the Supreme Award at the New Zealand Aged Care Association’s annual awards in 2016.
And in a project run by Massey University last year, a group of Year 5 and 6 Albany Primary School students visited residents at local Aria Gardens Home and Hospital as part of an inter-generational approach to break down barriers around communicating with people who have dementia.
Massey’s Annabel Grant says research shows that community education is one strategy for reducing the possibility of stereotypes developing, and reducing barriers to social interaction.
“Educating the wider community by way of intergenerational programmes can link younger and older people, benefiting both generations.”
This is true of Epsom’s Elizabeth Knox Home and Hospital’s volunteer programme, which sees a large number of students from the local high schools regularly visiting residents.
The success of such programmes suggests a willingness to break down intergenerational barriers and start a more open conversation around ageing.
Perhaps we should consider rolling out such initiatives across the country in the hope of exposing all Kiwi kids to the realities of ageing.
Perhaps we should consider educating young people about death and dying, so that our children grow up knowing that it is natural and not something to be feared.
Perhaps this will help reduce some of the hangover stigma around the d-word and perhaps there will be fewer awkward family conversations in kitchens around New Zealand.