Predicting how long a patient will survive is critically important for them and their families to guide future planning, yet notoriously difficult for doctors to predict accurately. While many patients request this information, others do not wish to know, or are incapable of knowing due to disease progression.
Fuelling this complexity are families who prefer the patient not to be told for fear of torpedoing hope and reducing the quality of time remaining. Conversely, patients may want to know themselves, but do not want to distress their loved ones with this knowledge. Continue reading →
When I was younger I was raised on a steady diet of rock and pop music. The Beatles, The Stones and Bowie were a regular sound track. An early and important experience of the significance of death for me was my father talking about the death of John Lennon. He spoke about it with the same hollow awe that I have heard people use in talking about JFK or Princess Di. These events and other deaths like them were for many moments of cultural punctuation. Events that changed people’s lives and their worlds.
Death and dying is all around us. Yet, we can be distanced from these realities due to the anxiety that death provokes and our society’s approach to dealing with it. Our relationship with the deaths of those closest to us can be limited by their being hidden away as a clinical activity within our hospitals and aged care facilities. By contrast the deaths of public figures have never been more visible and scrutinised. Social Media and the constant news cycle mean that we are always in the loop. Our uneasy fascination is privileged with contact and information.
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.
Rachel House (the first paediatric palliative care service in Indonesia) is seeking a Palliative Care Advisor for a 7-month volunteer post in Jakarta.
Applications for this exciting opportunity close 21 February 2016; and a position description for the role (to commence in May 2016) can be found here .
The Australasian Delirium Association is calling for Abstracts and Delegates to attend their annual conference, this year a 2-day Symposium relevant to all interested in improving recognition and treatment of delirium.
Given that delirium is a significant issue in palliative and end of life care, consider what you might be able to contribute to (or benefit from attending) this important gathering.
Professor Meera Agar features on the program, discussing results of RCTs on Delirium in Palliative Care.
What: DECLARED: DElirium CLinical And REsearch Days
When: July 14th – 15th 2016
Where: University of New South Wales, Sydney, Australia.
Over the years I have been privileged to share some meals with a visiting Lama from the Tibetan Buddhist Faith. Rinpoche is based in Scottsdale, Arizona, USA but regularly visits New Zealand. Dinners with Rinpoche are always very interesting and he has many stories to tell. Given my own professional interests, the topic of death and dying often comes up. During one of those conversations Rinpoche shared a related story about one of his late American friends.
We just caught news of this event… and if you live in Victoria, it’s one not to miss!
US expert, Dr Diane Meier (@DianeEMeier), will be speaking at a public forum about transforming the care of the seriously ill through palliative care. Everyone is welcome and it’s bound to be a treat.
If you’re interested, you can register via the link below.
US expert to transform palliative care conversation
International palliative care expert Dr Diane E. Meier will be the keynote speaker at a public forum on death and dying to be held in Melbourne on February 23.
It’s a couple of years old now, but still good…. Here is the introduction to an article in the Conversation about how Australians need support to die at home. Should be mandatory reading for politicians and health service policy makers!
“The baby boomers are growing old and in the next 25 years the number of Australians who die each year will double. People want to die comfortably at home, supported by family and friends and effective services.
But more than half of Australians die in hospital and about a third die in residential care. Sometimes they have impersonal, lingering and lonely deaths; many feel disempowered.
Grattan Institute’s Dying Well report sets out how we can improve the quality of dying in Australia. With an investment of A$237 million, we can double the number of people who are supported to die at home – and the same amount could be released from institutional care spending to pay for it.”
‘The wisdom of the dying’ has perhaps become a cliché nowadays. A Google search using those few words returns around 39 million results.
But what I am really curious about, are the few words that really pierced your heart or absorbed your mind; those simple words that affected your spirit in a profound way.
Heart Connection by Alisa Looney. Photo by Nancy Regan, taken in Puyallup, Washington, used under Creative Commons licence.
Talking to patients can be challenging, and it can be a struggle to make a connection sometimes. You need to have a plan as to how you are going to play the interaction game, and it can feel like a particularly demanding game of chess at times. You may have to pick your words carefully, as not everyone is naturally trusting, especially towards someone that they have never met before i.e. a total stranger. What worked on patient A in room 2 may fail dismally with patient C in room 5. Everyone is different as are their responses to your attempts to make a connection. That is what it is all about, through use of all the communication skills that you have learnt, you try to make a connection with another person. How can I ‘click’ with the other person in order for us to have important conversations?
The Australasian Delirium Association is calling for Abstracts and Delegates to attend their annual conference, this year a 2-day Symposium relevant to all interested in improving recognition and treatment of delirium.
palliverse.com 