Freedom to choose in aging or adversity

I’ve been mulling over the challenges we face when we find ourselves having to rely on others for some (or all) aspects of our lives after having been independent for as long as we can remember. After having made our own decisions for as long as we can remember. This isn’t easy, not easy at all. It may happen because of mobility issues or other limitations due to infirmity, or simply because of advanced age. When my nephew posted this fabulous image on Facebook earlier today I realized that what I’ve been thinking about is really how to preserve our freedom to choose – to make our own decisions – in the face of limited independence.

I know, this sounds like a sobering subject, but not nearly as sobering as the world’s political landscape right now, and at the moment it feels like there’s far more chance of helping improve our freedom to choose in vulnerable situations than in helping restore a civil tone in public discourse or de-escalate counterproductive trade wars. So let’s stick with our freedom to choose.

We have to balance many trade-offs when we make decisions throughout life, and depending on our personalities and our circumstances we may make widely diverging choices. For example, we make choices based on considering things like:

• Ere on the side of safety versus take the risk
• Personal gain versus the common good (for family or even larger community)
• More money versus job satisfaction
• Making time for others versus finding time for ourselves
• A meaningful life versus being alive

You get the idea. The point is that for much of our lives, for most of us, we are the ones making the decisions that impact our lives. We’re happy with some of them and maybe not so happy with others. But we make them ourselves.

So what happens when we lose control of that freedom to choose? Based on a few examples of friends and family I’ve seen recently, it can leave us frustrated, depressed, and despondent. And, based on these same observations, I’m wondering what we can do while we’re still free to choose to prevent us (as best possible) from feeling that same way “when it comes our turn”.

Before I go any further, I should explain what got me thinking along these lines. It was yet another excellent book from my university library, this one entitled Being Mortal: Medicine and What Matters in the End by Atul Gawande. This book really resonated with me, probably because I am at that “interesting” age where friends and extended family members are either meeting the challenge of looking for the best possible accommodation for an aged parent or they are looking for such accommodation for themselves. It’s hard to avoid, it’s all around us!

Dr. Gawande’s book, which I highly recommend, explains that the medical profession is trained to save lives and “fix” medical problems. At all costs. Period. It’s their quest, their raison d’être. The possibility of suggesting an alternate approach to dealing with a serious illness that may result in less quantity of life but improved quality is either very low on their radar screen or completely missing. And he states this as both a doctor and a caring person. It’s just a reality. It’s a reality we need to know so that we can ask better questions and be able to make better informed decisions about our own care.

In his book, Dr. Gawande also explains that in many – too many – seniors’ residences and nursing homes, the rules and regulations that are in place emphasize safety, cost, and keeping people alive over the opportunity for residents to have a degree of choice over their care and, importantly, the opportunity to have continued meaning in their lives. The book shares examples of seniors’ residences where simple changes have made an enormous difference is the quality of life of its residents, including replacing artificial plants with live plants, allowing pets, and having schools partnered with the residences for intergenerational activities like “adopted grandparents” reading to school kids. In other words, the success stories involve providing an environment in which residents continue to interact with the rest of the world; they feel that they are part of the world rather than that they have been warehoused. As it turns out, the resulting difference in lifting depression is staggering.

So, in thinking about all of this, it appears that having a living pre-will may be just as important as having a living will. [A better name than pre-will is probably in order, maybe we can call it a living agreement of reduced independence or LARI. 🙂 ] A living will is a written document that allows a patient to give explicit instructions about medical treatment to be administered – or not administered – when the patient is terminally ill or permanently unconscious. A living pre-will might be a written document that allows a person to give explicit instructions about the basic requirements they will need/expect in order to maintain their freedom to choose within an environment of reduced independence.

Based on my experience to date, my own living pre-will might well look something like the following.

Jane’s Living Pre-will.

If at some point I end up alone and agree that I am unable to live 100% independently, please respect the following points:

• I need some pleasant personal space of my own that is private.
• I need some of my personal possessions around me.
• I need constant access to books and writing materials.
• I want to have a cat.
• Don’t be worried when I nap often. I have been doing that since I was 70; you should try it sometime.
• Please don’t be insulted if I don’t always want to do everything younger people do. Sometimes it’s just too tiring, and I don’t need to do everything. Please respect it when I say, “No, thanks.” I’m OK.
• When my health goes badly wrong, please honour my living will.

What do you think? What would your living pre-will look like? My mother would have insisted on her piano. Others may require access to a garden. The important thing is that you have an opportunity to provide your input to these decisions while others are listening. It’s your freedom to choose at stake.

And now that we’ve sorted this out, we can get back to fixing the world. It needs all the help it can get!