As care providers, we need to understand that inclusive language within care planning doesn’t begin and end with cultural sensitivity.
It also means reflecting the make up of our society. Including those without a family support network.
There are many reasons why people find themselves without a connected family or a family-driven support network. Estrangement and death are the obvious ones. But there are a myriad of grey shades we often don’t consider when explaining, pitching or selling elder care or end-of-life scenarios.
Here are the communities we need to reach to deliver the non-family related care planning message
Geographically distanced families
Distance is a big one in this big, brown land. It is incredibly difficult to help someone age well and die a good death when you are in the Pilbara and the family is in Wollongong. Or if you are in Port Kembla and they are in Wales.
Sometimes, we forget this. Or we did until the pandemic shut borders and essentially locked away families from each other, highlighting how much of a difficulty distance can be.
There has to be a balance that allows for policy to be met in relation to access and uniformity that also creates space for distance to be managed better.
We can do this as an industry with technology at a critical time in care, such as illness or near death.
But let’s aim for a more integrated approach on terms of providing quality care. We can promote connectivity through flexibility in policies and activities we plan, too. For example, regular virtual family catch-ups, online trivia and gaming, across centre virtual book clubs and more.
Bridging the gap and reconnecting families informally can help them become more inclined to tackle conversations about care planning later.
Navigating pre-existing disabilities
We talk a lot about disability as a result of ageing. Yet not a lot of dialogue is brave enough to tackle pre-existing disability and the impact of ageing on it’s future management.
Consider the ageing parents of a disabled adult child living at home or receiving a significant level of support from the family. Those elderly parents face certain complexities and concerns other ageing parents do not share. This may influence their care choices strongly. Especially if they have concerns about what assessment and outing their necessity for care themselves may mean for their child.
People with disabilities also have their own sensitivities within care planning and the use of institutional based care. We can’t ignore that the disability community has some genuine and reasonable reservations about care planning and accessing institutionalised care. Abuse, failed service supply and ableist attitudes are still topics garnering regular headlines for all the wrong reasons.
Voluntary assisted dying has a massive image problem in the disability community. Opponents to VAD often use the disability community’s fears as leverage. And this taints elder care and death care indirectly.
It is imperative that the one in five Australians with disabilities understands that accessing care plans and working with care services is about preserving autonomy. Not only through direct messaging to the disability community. But also making sure that the general care planning message centres on the person in an appropriate and non-ableist way. One that is free from language that disempowers and diminishing capability while highlighting autonomy and self-direction in an authentic way.
As carers, we need to understand better the capabilities of people with disabilities by understanding the disabilities better. Not all disabilities are the same and their impact is influenced by everything from available supports through to personal resilience. And not all families are as supportive of disability as the person with that disability needs them to be.
It’s paramount we make a conscious effort to ask the person receiving the care what their care issues are. Too many carers unfortunately default to the family or other representatives to fill in the blanks through expedience or preconceptions related to a disabled person’s ability to self-advocate.
This means making time to talk. Nurses and carers need time to spend time with people with disabilities, especially when there are communication considerations. That way, impatience and pressure don’t over-shadow what could be meaningful and helpful interactions.
Disability sensitivity training can help. So too can open discussions about disability pride and inclusion. And taking an active approach to listening to the disability community through consultation when developing care strategies, inclusion programs and community outreach.
Care viewed through the abuse lens
If there is a history of any kind of abuse in a family, this can have a deep impact on the perception of individual safety and autonomy. And that directly influences how we navigate care planning.
It’s important not to assume. Even if a family looks somewhat cohesive on the outside.
Reconciling the parts of the relationship that allow abuse survivors to connect, talk and interact as a family member to a relatively comfortable degree may be a feature.
That doesn’t mean the level of trust required to make medical decisions, make care choices or to advocate for a person’s choices during end-of-life has been reached. A person can like or love family members but not trust them with care plan activation or medical decisions.
And that’s OK. But it’s important to recognise that the law lacks the nuance to understand complex family situations unless the individual has it specified.
Here, it’s important to ensure that all recipients of aged care services and end-of-life support understand the baseline the law adopts in relation to their own personal circumstance. The reality of a person’s familial relationship in relation to decision-making, especially in relation to non-articulated aspects of care should be discussed as part of a functioning care plan.
In these sorts of situations, the importance of the Hierarchy of Values in bridging these gaps cannot be understated.
Care in displaced families
The Stolen Generation of Indigenous Australians and the Forgotten Australians who grew up in care environments may not have the family network required to activate care plans and end-of-life management effectively.
To a person removed from family, often against their will, trusting institutionally offered care planning sounds positively frightful. Especially to those who have faced abuse and trauma in care situations.
You can understand that a vulnerable child who had their heartbroken by carers and system in the name of care are going to shy away from care planning conversations. There may be outright avoidance.
Yet values-based care plans have the ability to give people peace of mind. It needs to be explained that a well-designed care planning experience can be the best defence against finding themselves in a place where choices and dignity are lost again.
And that care plans can be activated in home and facility-based environments.
In Aboriginal circles, it’s often talked about that many small conversations over a period of time make the trust in the end. Time, patience and small doses are you best allies.
It also means true reconciliation with the historical wrongs of the past through visibility, representation, and cultural inclusion strategies that span the workforce and the client base.
And making a commitment to safeguards that don’t reinvent the same conditions and culture that allowed for policies and practices that hurt generations of people.
If we don’t want people left behind and left out through distrusting healthcare, aged care and all forms of government run care, we need to be transparent, inclusive and vocal in our desire for real change.
Everyone deserves care
As professionals and volunteers in the care industry, we do an awful lot with very little. We’re able to do that because we understand that all kinds of people bring experiences, talents and skills to the table that benefit the whole. Having an approach where we reflect that knowledge and understanding in how we speak about care to the wider community can help build trust. It can also ensure that people who are currently feeling as though their experience of aged care or end-of-life will be diminished due to a lack of family or formal network are invited to the table.
By ensuring we open up our messaging in aged care and end of life, we can make space for more and more people to feel safe, reflected and respected at care level.
Want to find out how you can begin to make for an inclusive aged care experience?