In Australia, we’re increasingly faced with natural disasters and other emergencies on a personal and a community level. Loss of life is a feature of these sorts of events and therefore, directly calls for a higher level of death literacy in Australia.
But it’s not only the threat of losing our lives to natural disaster that should get us thinking.
Here’s what natural disaster is teaching the death literacy scene – and why we should be listening
Using the right models
In natural disasters, the models you use are everything. The core model is to approach disaster management from a perspective of:
· Preparedness – that is, being ready for all kinds of challenges you face
· Prevention – determining where the bumps in the road might be and doing what you can to reduce risk and create contingency
· Management – boots and all, have a hands-on strategy for managing outcomes
· Recovery – the show isn’t over after the event occurs. Everything needs a cool down and recovery cycle to close off an event.
We have some fantastic models available to us to provide the care people need as they die. Yet culturally, we still have some difficulty with moving forward with the care we need.
This problem and many more with providing care with people is the central focus of Allan Kellehear’s breakthrough book, Compassionate cities: Public health and end-of-life care. The book carefully outlines when we need to do on a policy, awareness, application, community-building and implementation level. He even talks about the importance of action strategies on a community level through book clubs and trivia nights to improve death literacy.
It’s about engaging people as a community rather than siloed people and professionals finding their way through.
Think about it as a natural disaster for a moment. A lone person filling up their wheelie bin to defend their house from a bushfire is likely in for a tough challenge. One that they may pull off as an individual. But if an entire street lines up their wheelie bins, wets their houses and takes it in shifts as they rest and defend as a group to put out spot fires, then you’re onto something.
We can achieve much more if everyone pulls in the same direction.
Part of the issue with catering to a loss of capacity and/or the end-of-life process is we’re under-prepared. We don’t talk about death in real terms. And that means we don’t talk about the challenges we are likely to face on the road to a quality death experience.
Working in aged care and healthcare, we understand these challenges intimately.
Some challenges you may need to face when planning for high dependency care and/or end-of-life include:
· A lack of documents such as will, estate documentation, nominated power of attorney, financial records and advance care plan
· The reluctance or reticence of a person to share what they what they want
· Pressure to comply with the wishes of loved ones or professionals during high pressure events
· The stress involved with high pressure, fast-paced decision making
· A lack of local care services through the sheer volume of people needing help and/or the lack of resources in a geographic area
· The articulation of what challenges you may face in robust enough terms.
You cannot account for every likely scenario as an “If this happens, we will do this” sort of plan. But you can articulate someone’s values well enough to make informed choices when facing:
· A person losing the ability to communicate in a physical sense through disability or because they are no longer conscious
· A person losing the ability to decide and/or advocate for themselves
· Challenges from within the family on what choices are the appropriate ones
· Confusion related to medical and care choices and/or belief systems
· No idea how someone feels about prolonging their life or euthanasia and/or not having these wishes documented to the legal standard
· Financial constraints
· Misinformation and assumption.
If we don’t think, talk or document scenarios properly, it becomes very difficult to make objective, intelligent decisions later on.
We cannot prevent ageing or death, but we can reduce the risk that the experience is unnecessarily traumatising and painful for all concerned. Watching people linger while answering complex medical, legal and care questions can have a profound impact on a family.
This increases the potential for trauma, over-treatment and a loss of dignity to boot.
Prevention means having a care plan. And that includes:
· Addressing what happens in the best- and worst-case scenario
· Reducing the number of decisions a loved one may need to make if a person loses the ability to legally or medically advocate for themselves
· Outlining where the boundaries and cut-offs are is in relation to additional, invasive and life-prolonging treatment
· Meeting the dignity and care needs of the individual by discussing whether they would want to enter an aged care facility, hospice, aged care or palliative care unit
· What the contingency plans look like if someone does indeed need extra care
Prevention is a care plan aimed at minimising the loss of dignity and reduce the risk of trauma for the person receiving care and the loved ones that are supporting them. And ensuring the individual receives values-based care.
Looking after an ageing or dying person is hands on. With that management comes the complexity of emotions such as grief, melancholy, and depression. There is a heightened sense of loss that can be overwhelming.
That’s without looking at the complexity of distance, geography, estrangement and dysfunction within the mix.
The problem we have is that we expect loved ones to navigate the medical, legal and psychological effects on ageing and dying, mostly without prior in-depth knowledge or training. They are completing this process while they are highly emotional, overwhelmed, and stressed.
To manage high dependency care and end-of-life scenarios well, loved ones would benefit from:
· An actionable care plan that does not rely on the nearest and dearest to a person to activate support options
· Greater death literacy within their family unit and their friendship circle
· The creation of care trees and networks that support the people who are supporting the individual
· An understanding that activating people to remove the domestic labour, look after the kids or walk the dog has an incredible power. One that is far more useful than “sing out if you need anything”
· A greater understanding and access to support from aged care and/or palliative care services at community, home and facility level
· Community activation that helps mobilise people to support the dying in the same way they may support new parents with support groups, education, literacy, informal activities and respite care
· Access to counselling and therapy for the person receiving care and those who are managing and administering it.
When a person dies, there is a ritual with the funeral and the wake. But we rarely look at what we may need to cope with a variety of situations as part of the recovery process.
If we took death recovery seriously, it may include:
· Explaining what to do if the documents required to make medical, legal and end-of-life decisions about a person who doesn’t have them
· Providing information about the post-death experience as part of the care process
· Introductions to networks and services that can help people through the last stages of life and the death and grieving process
· Promoting the use of psychologists and psychiatrists as a mainstay of the recovery process
· Improving strategies around coping with anniversaries and reminders of a person’s death
· Actively promoting grief counselling, support groups, art therapy and other therapies
· Normalising community remembrance practices
· Providing specific services for people who have experienced a traumatic loss and/or losing a person with trauma attached to the relationship
· Talking more about end-of-life care with people outside the elderly community
· Funding culturally inclusive initiatives
· Advocating for workplace policy to allow people time to grieve
· Being as transparent as possible about our services and fees so that people can make informed choices
· Making a commitment not to exploit or capitalise on people when they are at their most vulnerable as an industry.
We all have a duty of care to make death literacy as accessible to the Australian public as possible. Whether we work in a care capacity across ageing, palliative or disability services or we’re directly linked to deathcare and post-death services is immaterial. What matters is improving the way Australians die. Not only to make a better experience for the person who needs us or the loved ones who rely on us during this difficult time, but to change the culture surrounding death and dying.
Through using preparedness, prevention, management and recovery systems, we can help take the mystery – and even some of the pain and trauma – out of end-of-life.
Let’s advocate for the role of planning in death literacy together.
Check out the resources on our blog and/or book in to discuss the ExSitu care plan today.