Delirium is a common, distressing complication of life-limiting illness, yet poorly understood, often misdiagnosed and poorly managed. The Australian Commission on Safety and Quality in Health Care (ACSQHC) recently launched its Delirium Clinical Care Standard. I was fortunate to attend the official launch event on 15th July 2016 – the stand-out of which was the powerful story of Michael, as told by his wife Joan Jackman, who was Community Representative on the Delirium Clinical Care Standard Working Group.
She has kindly allowed me to reproduce her speech here and I hope it will spark discussion about delirium, what we can learn from Michael and Joan’s experience, and how we can do better.
Michael loved the Australian bush. Photo: Wayne Robinson
Michael’s story:
‘Every medical condition is about a person with an individual history, friends and family, and a personal story. The person in the centre of this story is my husband Michael – a healthy, fit, intelligent man – who had been a fitness trainer in the British Air Force before becoming a British-trained Remedial Gymnast in Rehabilitation, for people with a disability. He was an elite sportsman, with a love of life, and also for his family.
Around the age of fifty-nine or sixty, Michael began to experience changes, utmost being that he became increasingly disengaged –with us, and with life! Something was wrong! We sought help. After three misdiagnoses and six years, Michael was finally diagnosed with a Younger Onset Dementia. He was by then, 66 years old. Continue reading →
In palliative care, delirium is everyone’s business. Anyone can get delirium if they are seriously ill. It is a distressing symptom – for the person with delirium, their loved ones and the professionals who care for them. Although it is common, potentially preventable and may be reversible, it is often missed, misdiagnosed and mismanaged despite our best intentions.
This 5-minute video is an excellent resource for the public and health professionals alike, (and seems to cover everything that it takes me 45 minutes to teach to nurses or doctors!). I discovered it via its co-creator, Delirium Champion Dr MS Krishnan.
This week, I am taking over Palliverse to share posts about delirium in palliative care – from conferences to clinical standards to a heart-wrenching personal story. Continue reading →
Join next week’s #PallANZ tweetchat on the topic of “Living Well with Chronic Illness”, the theme of Australia’s National Palliative Care Week (#NPCW16). Anyone with experience of living with life-limiting chronic illness, having a loved one with chronic illness, or working with people with chronic illness, is encouraged to participate. You don’t have to be Australian, and Twitter newbies are welcome!
Australian Institute of Health and Welfare statistics show that most people who who access palliative care have cancer. However, palliative care can be of benefit to many people living with non-malignant diseases and chronic illness as well. These include dementia, heart disease, lung disease or kidney disease, to name a few. Many people could benefit from what palliative care can offer, such as management of pain and other symptoms, advance care planning for the end of life, and support for carers.
While we’re on the subject of conferences being held in Canberra this year, the Australian Association of Gerontology (AAG) are extending the closing date for abstract submissions for their November conference, until Friday 29th April 2016.
The conference theme is “Capitalising on the Ageing Dividend: Reimagining Our Future” and submissions are welcome on a variety of ageing-related topics, including palliative care and end-of-life care.
What’s cool about the abstract submissions? Authors are asked to submit a 100-character “Tweetable” along with their abstract.
Visit the AAG website for more details on the conference and abstract submissions.
i’m sorry for all the people in my life i haven’t had a chance to already talk to this about in person, and this is sort of why i’ve been quieter on social media.
but my treatment, and treatment aims have started to move into the next phase of stage IV cancer, and we’re at a point where we can start talking a timeline. i am now, without question, terminally ill – which means, my life expectancy is under 12 months. for the first time, i asked my oncologist straight out for numbers, because he said that a point would come where he could start estimating. that point is now. his ‘worst case’ estimate (all treatment failing now) is 3 months, and his ‘best case’ estimate (all treatment working for as long as would be expected) is 12 months. the reality will lie somewhere between those two figures. it’s my…
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.
Are you interested in global palliative care? Australasian Palliative Link International (APLI) are holding their Annual Forum in Adelaide on Wednesday, 22 June 2016, prior to the Multinational Association for Supportive Care in Cancer meeting.
APLI are responsible for the award-winning Project Hamrahi, which links Australian palliative care clinicians with their Indian counterparts who are establishing local palliative care services. APLI says the annual forum aims “to update the healthcare community about Project Hamrahi activities, provide a networking opportunity for like-minded clinicians, allow the recruitment and training of new Project Hamrahi mentors and finally to publicise the work of APLI.” It looks like an inspiring schedule of speakers.
For more details and registration, visit the APLI website.
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 →
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.
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