When people even fleetingly turn their thoughts to ageing and aged care, inevitably they are faced with having to consider the mortality of a loved one – or indeed themselves. This can be a confronting experience, largely because it’s a topic we don’t often discuss. In fact, we actively avoid it. In failing to confront our mortality, we also fail to consider what it is that’s really important to us as we age.
Our autonomy, the right to determine what, when, where, how and with whom we do the things that we want are just taken for granted. As a result, when the time comes, many of us carry a negative view of aged care as a last resort – a place you go while you wait to die. But for so many, the lived experience is made worse when they realise that upon entering aged care they surrender their autonomy, their purpose.
The aged care ‘system’ is obsessed with SAFETY above all other considerations and reassures families, doctors, nurses, aged care providers and the government that what we do is in the ‘best interests’ of the elderly.
In his best-selling book Being Mortal, practicing surgeon Atul Gawande takes a revolutionary look at how we care for our elderly and those living with terminal conditions.
Gawande eloquently explores the theme of mortality through research and gripping stories of his own patients and family to arrive at the conclusion that we don’t just want to live longer, we want to live for a reason.
In doing so, he turns the idea of a ‘good death’ on its head, arguing instead that a ‘good life right to the end’ is the desired goal for patients and families.
“Whatever the limits and travails we face, we want to retain the autonomy – the freedom – to be the authors of our lives. This is the very marrow of being human.” Atul Gawande
But how do we ensure this happens? As Gawande says in his Talks at Google address, the key to achieving this is to merely ask the right questions.
“What is the goal? What are we fighting for now? What are we willing to lose along the way and what are we not willing to lose? These questions are transformative and somehow, we haven’t been having these conversations. We have to have them earlier, we have to have them more and we’ve got to do it better,” said Gawande.
• What’s your understanding of where you are right now and what your situation really is?
• What are your fears for the future?
• What are your hopes for the future?
• What are you willing to sacrifice and not willing to sacrifice for the sake of more time?
• What’s the minimum quality of life you would find acceptable?
From an aged care perspective, these questions have the power to not only change how we care for an individual but also the general approach to aged care in our country.
Once we focus on what is really important to a person – whether that’s our own loved one or one of our residents in an aged care setting – we are empowered with the information to help them reach their goal. Everything from accommodation and treatment options to lifestyle activities can be tailored to ensure that the person is living life their way.
This is a philosophy that guides us here at Seasons and it’s why all our residents have their own private apartment with a lock on the door, and their own kitchen and facilities.
When I talk with people about Seasons and why we do what we do, I often tell the story of one of our residents who moved into Seasons with his wife. Despite the fact that he was 92 years of age, needed a wheelie walker and was almost blind he still considered himself to be his wife’s carer. That was his purpose. Even though he was finding it harder to do things for himself, what was important to him was that he was able to boil an egg for his wife every morning.
We could have told him it was too risky, that he might burn himself, that we would provide her with a boiled egg from our kitchen instead. However, seeing how much joy it brought him to be able to do that one small thing for his wife, we found a way to support him to keep doing it. By writing this into his care plan, care staff could assist him with this one small act that made a big difference to his quality of life.
As Gawande points out, “We have the room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognise that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives”.
My hope is that all aged care providers read Gawande’s book and ask themselves ‘how can we do better?’
We must stop depriving people of their autonomy as they age and become increasingly frail. Being ‘safe’ is not the most important consideration for people as they age, the dignity of risk in autonomy and self-determination is far greater import to most.