On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.
We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
What would happen after the joyous reunion of Poppa and Junior? This was a question asked at our multidisciplinary meeting two and a half months ago. From the accumulated experience of our staff members we thought it could go either of two ways:
Poppa might get a “boost” from being reunited with Junior and other family members, and might improve.
Poppa had used what was left of his energy holding on to see Junior and would continue to deteriorate.
Cape Reinga the northern-most tip of New Zealand, where the spirits of Maori depart on their final journeys. Photo by Gadfium.
The first time I met the young ladies I had been cross-covering at the hospital, and was taken to see each of them as they both had severe pain and discomfort. They came from completely different backgrounds, had lived completely different lives but somehow ended up on the same journey.
About a week or so later they had both been admitted into our inpatient unit for pain control. Adjustments were made and they became more comfortable, but a few days later pain had returned again, as well as other problems. We had to aim at constantly moving targets, and so it would be over the next three months of their individual roller-coaster rides.
The similarities were startling; the same diagnosis, the same poor response to treatment, and in the end the same prognosis. What was completely different was their individual experiences of the same outcome. Continue reading →
There’s no way around it: children sometimes have to hear it like it is. Despite our desire to keep their early years carefree, we may not be doing them a favour by keeping some hard truths from them. And for those things that are inescapable, like the death of a family member, glib answers won’t do.
We all learn at some stage that the world is not as we’d like it to be. That is possibly the single most important lesson in life. The big question is how to teach it to our kids, and when.
The “when” is sometimes out of our control, as circumstances can dictate. But there are parts of the “how” that can be more manageable.
Children are not empty vessels
Kids create deep and powerful narratives about the world regardless of what we do or don’t do. They do this for the same reasons we all do – to explain how the world works and to create meaning.
It is a mistake to think this narrative is absent in them until we decide to help create one. The reluctance we sometimes have to involve ourselves can be a result of this naive view.
We imagine they are somehow neutral or unsullied in their views, and that when we talk to them about hard issues we are forcing them to come to grips with an imperfect world.
We don’t always know what they don’t know. We assume they have developed a lot of cultural norms when they haven’t, and we assume they are unaware of things they have really thought a lot about.
One thing is sure: if we don’t help them make their narratives, they will do it themselves anyway, and perhaps not in ways that are healthy or optimal.
There are two important things we can do as parents to prepare our children for some deep and potentially disturbing conversations, and to help them build a more rational picture of the world.
The first is to help them make sense of the world through frequent and long conversations. Making meaning is the prime function of language, after all. This is where an established behaviour of talking is critical.
The only way to know how they currently see things is to talk with your child – a lot. Talk about issues big and small, and give them the chance to ask things that take time to well up in conversation.
The second is to treat them as rational beings capable of making sense of what is going on around them.
Children are far more rational than we give them credit for. And they are far more capable of deep insights than we usually imagine.
I work in the area of teaching children to think. The ability of very young children to do this well is a constant reminder of how our educational system underestimates them.
Two-way exchanges
The thing that makes a rational approach possible is treating conversations as two-way exchanges. We don’t just talk to children to instruct them, and we don’t just talk to understand them – we also talk so we can understand each other.
This is a critical point. By talking to understand each other we give children the opportunity to normalise their thinking, and to help understand the norms of mature social thinking. This in turn is important because it provides the ground for a rationality based in social competence, in which we reason to solve problems through discourse and social interaction.
As the Russian psychologist Vygotsky wrote in Mind and Society, children first learn a competence socially and then internalise it.
Every function in the child’s cultural development appears twice: first on the social level, and later, on the individual level.
To put it simply, if you have not modelled how to talk through difficult issues with a child, that child has not learned to internalise a mechanism for dealing with such issues.
This is a key component of teaching resilience – and is there anything we want for our children more than this?. For without the cognitive tools to manage change and uncertainty, they will be less resilient than they could be.
Whether the issue is the crashing reality of Santa’s state of existence, the death of a family member, or a dramatic change in lifestyle, there will be limited recourse for children to rationally understand the situation, and their role in it, if they have not been taught these skills.
So talk to your children about how they reckon Santa does it. Talk about mortality and what it means for us as humans. Talk about what life was like in the past and could be like in the future. Explore and unpack all the implications of these things with them.
Or just talk with them a lot about anything. Give them opportunities to come up with questions about these things themselves. If you give them the chance, they will not disappoint you. And by doing so, you will make them less disappointed.
If death is the final taboo, it might not be for much longer. There has, in recent years, been increasing effort to promote conversations about death and dying, both in the home and in more public settings. For example, death cafes, first launched in Switzerland in 2004, have spread around the world, enabling people to speak about their fears over cake and coffee.
Our reluctance to talk about death is often taken as evidence that we are afraid, and therefore suppress thoughts about it. However, there is little direct evidence to support that we are. So what is a “normal” amount of death anxiety? And how does it manifest itself?
Experimenting with death
Judging by studies using questionnaires, we seem more bothered by the prospect of losing our loved ones than we do about dying ourselves. Such studies also show that we worry more about the dying process – the pain and loneliness involved, for example – than about the end of life itself. In general, when we are asked if we are afraid to die, most of us deny it, and report only mild levels of anxiety. The minority who report high levels of death anxiety are even considered psychologically abnormal – thanatophobic – and recommended for treatment.
On the other hand, our tendency to report only low levels of death anxiety might be a result of our reluctance to admit to our fear, to others and ourselves. Based on this hypothesis, social psychologists have, for almost 30 years now, examined the social and psychological effects of being confronted with our own mortality. In well over 200 experiments, individuals have been instructed to imagine themselves dying.
What’s worse: the death of a loved one or facing our own death? Photographee.eu
The first study of this kind was conducted on US municipal court judges, who were asked to set bond for an alleged prostitute in a hypothetical scenario. On average, judges who were confronted with their mortality beforehand set a much higher bail than those who were not confronted – $455 versus $50. Since then, many other effects have been found among groups including the general population in many different countries.
Besides making us more punitive, thinking about death also increases our nationalistic bias, makes us more prejudiced against other racial, religious and age groups, and
leads to other such parochial attitudes. Taken together, these dozens of studies show that being reminded of death strengthens our ties to the groups we belong to, to the detriment of those who are different from us.
Reminders of death also affect our political and religious beliefs in interesting ways. On the one hand, they polarise us: political liberals become more liberal while conservatives become more conservative. Similarly, religious people tend to assert their beliefs more fervently while nonreligious people disavow more.
On the other hand, these studies have also found that thinking about death tempts us all – religious or otherwise – towards more religious belief in subtle, perhaps unconscious ways. And when the reminder of death is sufficiently powerful and when participants are not mindful of their prior political commitments, liberals as well as conservatives tend to endorse conservative ideas and candidates. Some researchers claim that this could explain the US political shift to the right after 9/11.
What do the results mean?
But why does the prospect of death make us more punitive, conservative and religious?
According to many theorists, reminders of death compel us to seek immortality. Many religions offer literal immortality, but our secular affiliations – such as our nation states and ethnic groups – can provide symbolic immortality. These groups and their traditions are a part of who we are, and they outlive us. Defending our cultural norms can boost our sense of belonging and being more punitive against individuals who violate cultural norms – such as prostitutes – is symptom of this.
Consistent with this interpretation, researchers have also found that reminders of death increase our desire for fame and for children, both of which are commonly associated with symbolic immortality. It turns out that we do want to be immortalised through our work and our DNA.
Thinking about death makes us dream of being famous. Andrea Raffin
When asked, we do not seem, perhaps not even to ourselves, to fear death. Nor would we guess that thinking about death has such widespread effects on our social attitudes. But there are limits to our introspective powers. We are notoriously bad at predicting how we will feel or behave in some future scenario, and we are similarly bad at working out why we feel the way we do, or even why we have behaved a certain way. So, whether we realise it or not, it seems that to bring death to the surface of our minds is to open Pandora’s box.
So what should we make of these new efforts to demystify death and dying through conversation? It is hard to say. Increasing death’s profile in our imaginations, private and public, might make us all more punitive and prejudiced, as the research found. But then perhaps we get these negative effects precisely because we are unaccustomed to thinking and talking about death.
In exposure therapy, carefully exposing patients to the source of their anxiety – an object, an animal, or even a memory – reduces their fear. In the same way, perhaps this most recent taboo-breaking trend will inoculate us psychologically, and make us more robust in the face of death.
“It’s about starting a conversation…[Doctors need to] throw in a phrase like how you going, how’s the old boy, is he getting up, is he getting the job done?”
“…I find men want to talk about it, but someone has to start the conversation with them.”
Pulitzer prize-winner Tina Rosenberg visits La Crosse, Wisconsin, home of the Respecting Choices program, where 96% of adults reportedly participate in advance care planning discussions. (Talking Early About How Life Should End, New York Times).
And we are back! After our very successful inaugural tweet chat last month, let’s rock again with our next effort, and Let’s talk about death, baby together with Palliative Care Australia.
A tweet chat is a virtual meeting on twitter. This chat has the hashtag #pallANZ. Remember to use this hashtag in all your tweets, otherwise people will miss your comment. If you are not familiar with tweet chats, check out our Twitter 101 and 102 articles on this site.
It’s hard to talk about dying, or as we sometimes say (only half joking), the D word.
Here are some great references on the subject recently:
It’s hard to predict events in the final days and hours of a person’s life. Some deaths are wonderful – a gentle decline preceding a gracious demise. Certainly these are the sorts of deaths we see in films or on television, where the dying patient bids farewell to gathered family and friends before softly closing his eyes.
These gentle departures happen in real life too – many people simply die in their sleep, and many families and friends share the privilege of witnessing the calm and serene departure of a loved one. Of course, grief follows, but those left behind are able to take solace in the knowledge and memory of a peaceful passing.
Unfortunately for every “good” death, there are many which are much more stormy and drawn out. These deaths can leave families traumatised for many years or simply make the grief that much harder.
Welcome to this weekend’s reads. People seem to enjoy the cute animal stories, so I’ve included one (near the end, if you want to read it first).
The latest paediatric palliative care video (below) from Little Stars is about treating chronic pain in children. It’s nice to see how the interdisciplinary team interacts with, and respects, the girl in the video.
“I felt like I was beating up people at the end of their life…I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone’s life.”Continue reading →
