When discussing dignity in care plans, most people consider it as an act of consenting to care. Medical practitioners, health experts and the people at the centre of that care are agreeing on next steps. We’re taking the moment to articulate what happens and when it needs to happen.
However, saying yes to care is only one side of the story.
“You deserve the right to consent to care. You also deserve the right to refuse it.”
As we mentioned in our February newsletter, consenting to care also means defining when treatment stops. It is this act of saying no that protects the dignity of a person within their care plans.
By choosing when and where the lines are drawn, it is the person – not the medical system – that is the focal point.
This in turn creates conditions where the family and care facilitator in better stead to avoid the conflict between risk reduction and what the person seeking treatment may have otherwise requested. It helps all involved maintain their own sense of respect and decency.
All while reducing the risk of transgressing against values or facing unnecessary and avoidable moral, ethical and values-based quandaries.
Here’s how defining the treatment line can directly influence the effective delivery of dignity in care plan situations
It puts patient values at the centre
It’s really difficult to sit a person down and ask, “OK Bob, what does quality of life look like to you?”
How can one of the world’s biggest questions be broken down over tea and a biscuit?
The entry point is through discussing what Bob values.
For example, if Bob believes being in bed a lot is not his jam and life isn’t worth living without touring on the open road, this may inform the kind of treatment or drug therapy he receives.
Or if Bob values his independence and autonomy over all else, he’s much more likely to be satisfied with an in-home care regime with a focus on maintaining strength and capability. Especially when compared to entering a care facility and having everything done for him.
Cracking open Bob’s values and how he views himself and what he views as worthwhile informs how he views a life worth living.
Don’t reinvent the wheel when you don’t have to. The ExSitu Hierarchy of Values is specifically designed to get both you and Bob considering what values matter the most. It’s also a great way to prompt conversation if Bob hasn’t really considered where his wants, needs and values lie before now.
It reduces invasive treatments
If anyone is going to know what medical procedures or pain level they are willing to tolerate, it’s the person receiving the treatment. The person activating a care plan grows with their lived experience expertise the more time they receive care.
Take a cancer patient for example. If they spend a decade working through surgery, chemotherapy, radiation and hormone therapies to treat their prostate cancer, they will learn from that experience. Their ability to assess whether the side effects of chemo or an extra few months on the planet are worth it by the time they reach the next round.
Yet, we know that treatments often can and do continue well past the point of extending quality of life. And that people on care plans can face limited options through a lack of articulation. Especially when they lose the ability to advocate for themselves or consent to or decline treatments.
This can lead to situations where dignity is risked through legal or systemic obligations. Or when family assumptions and beliefs are imposed on an individual through the absence of consultation.
Understanding what a person can and can’t withstand with pain or treatment is an integral part of creating a care plan that preserves dignity. It can also define what level of disability a person may accept in real terms. Discussing events such as losing one or more senses, how someone responds to pain or the mental health impacts illness or a temporary loss of capability have had in the past can help. Ask them to articulate their history or what unacceptable loss looks like to them and work through treatment options with this information in mind.
It reduces the cost of treatment
It reduces the cost of treatment
According to a major UK study into end-of-life, knowing a person’s end-of-life choices can drastically reduce the necessity for invasive, intensive and unnecessary medical procedures. This in turn reduces the cost of end-of-life care by an average 35.7%. That’s money that often places the family in debt when they lose a loved one.
Adding financial strain on top of an already grieving and potentially traumatised family is avoidable pain. And most would shudder at the prospect of their last impression consisting of their death leaving a family grappling with large invoices and weighty debt.
Add to this a growing body of proof that prolonging treatment at end-of-life reduces the quality of a person’s death. And the greater the treatment and financial burden, the more prevalent the negative impact on the individual and their family.
Transparency surrounding care plans, advance care plans and what happens when a person can no longer make significant medical and healthcare choices is paramount to reducing unnecessary treatments. And with it, restoring the dignity of people in care who can no longer speak for themselves.
Inexperience with end-of-life and terminal illness often sees families selecting treatments out of trauma and grief than appropriate care. By explaining the processes associated with care plans, advance care plans, and the hierarchy of values, we can actively participate in providing choice. And creating the conditions where care plans resemble a person, not their pocketbook.
It gives a semblance of control
Control is an incredibly difficult thing to forgo. We’re talking about the Baby Boomers and Generation X. Two generations that defined themselves by bucking the system, asking for the lives they wanted, and carving their own way in the world. They self-respect and dignity is often shaped by a desire for autonomy, strength and choice.
Assuming these same individuals will go meekly into the night is a fallacy. And that is a wonderful thing.
We can leverage these free-spirited, intelligent, stubborn and creative traits within these wondrous individuals to improve their aged care and end-of-life experience. Appealing to their sense of bravery, self-determination and freedom can and does empower the person. And this empowerment in turn can help create robust care plans with the right amount of risk versus dignity in-built.
By stoking the desire to be seen and heard just as they are, ExSitu and anyone in care environments can work with the patient to create a care plan that reflects them.
If you’re struggling to start the conversation about what someone’s values might look like, ask them to tell you a few stories about the defining moments of their life. Pretty soon, you’ll start to see their behaviour, the qualities they admire and the activities that are meaningful to them come into focus.