Dignity of risk is gaining a greater spotlight under the Aged Care Reforms from the Royal Commission. While it’s been present in a lot of care environments, with articulating care plans and what it means to individualise care, we have the opportunity to look into how dignity of risk informs solid decision-making.
Let’s look at how a focus on dignity of risk can help you make better, more customised care decisions for people now
What is dignity of risk?
‘Dignity of risk’ refers to the concept of affording a person the right (or dignity) to take reasonable risks, and that the impeding of this right can suffocate personal growth, self-esteem and the overall quality of life (Ibrahim & Davis 2013).
First used by Robert Perske in 1972, the term dignity of risk was used in relation to people living with disabilities. Here’s a little taste of the context:
‘Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too.’
This is a really important point because it highlights how giving people the choice, even the choice to make a mistake, provides dignity. We can’t really exist if we’re kept in bubble-wrap and saved from taking risks for ourselves.
It wasn’t until the 1980 paper entitled ‘The Dignity of Risk’ by Dr Julian Wolpert where we got the full extent of the situation. Understanding the damage from over-protective safeguards and restrictive life in care situations, Wolpert made a case against the heavy-handedness of the situation. Wolpert argued that without risk, there was no dignity. Only a patronising and diminishing way to live that ate away at a person’s freedoms and self-esteem.
Dignity of risk was easily borrowed from disability to apply to aged care. It informs any decent advance care plan and can be applied to inform ALL our medical choices should we so choose.
How do you define risk and dignity?
We’re entering fairly individualised care when we’re talking about dignity of risk. Our appetite and desire for risk is not the same. Nor are the things we’re willing to forgo to get some dignity.
But we can find out this information if we know the right questions to ask. And this often comes down to finding out what people value.
As simplistic as it sounds, we make choices that define what risk and dignity is for us each day.
For example, would you stand in a line for four days for a new iPhone and risk a cold or a few terrible nights sleep? Someone else might.
Would you sing an off-key happy birthday on video dressed as a cake for a chance to win a million dollars? There are a lot of people who would do this.
But how we apply it to disability or aged care scenarios is a little more granular.
Here are some of the ways dignity of risk might inform your decision making in either situation:
- Is it worth the risk for you to do your usual walk around the block if this is the way you keep fit on a rainy and slippery day, even though your balance is ailing?
- Would you like a nightly sherry if your approaching end-of-life or are terminal even though relatives or doctors might disagree?
- Is it more important to you to see a family wedding than it is to attend your standard chemo appointment?
And within these questions, you uncover what a person is willing to negotiate.
Maybe you can successfully negotiate to be able to go to the wedding if you agree to take a form of mobile chemo in lieu of contact hours at your usual centre. Or you can negotiate time on the treadmill or in the garden instead of around the block on that rainy, slippery day. Or you can get that sherry with doctor approval as long as they are absolved of any legal ramifications.
This is the heart of where dignity of risk resides.
Choosing quality of life over quantity
Life is essentially a game of risk. At any given time, we can face some kind of fork in the road that puts us in a little more danger. And that’s part of what makes life more interesting. The stories we tell with fondness are the times we sailed against the winds of fortune and prevailed. Or when we snuck in to see that concert or did the cheeky thing to get what we wanted.
Being able to discuss this in real terms is what makes our life interesting.
Where it becomes tricky for so many is that we don’t take the time to articulate where dignity and risk lie together. We forget that the intersection between the two defines who we are as people. And it puts us in danger of being restricted or dealing with paternalistic attitudes if we’re not careful.
Defining the risk and the dignity alongside each other is at the heart of what we do at ExSitu. We give you the opportunity to articulate what individual risk is worth taking. You can define the terms of the pay-off that means something to you. And you can use that information to negotiate what quality of life, dignity of risk and being yourself mean to you.
By completing our advance care form, you have the ability to advocate for your choices, even if you lose the ability to communicate them for yourself. You can articulate treatment options, where the treatment should end, and how you should be treated in a medicalised environment.
In electing to participate in the card sorting process that makes up the Hierarchy of Values, you give anyone looking to support your care needs a map of what you value. In the Hierarchy of Values, you can let people know what sorts of things matter to you the most. And that way, even if there isn’t a solid map of what decision you would make at every fork in the road, there is enough information to help those who care for you to make informed decisions on your behalf.
All of which provides a roadmap to preserving your dignity while giving you the space to take risks that matter.
And you can apply this process to aged care, disability, and end of life. Or in any situation where you want to have the right to speak for yourself in the face of medical and care decisions.