This is a vital principle to understand – one of the most misunderstood concepts I’ve encountered in my speaking events. Paternalism is rooted in paternal caring, but it’s gone awry.
Paternal caring is necessary, even vital, when the cared-for person can’t comprehend what’s going on. (My favorite example is “No, honey, don’t touch the stove! You’ll burn yourself!”) It hit me in an instant when I saw this photo of my new granddaughter at age ten weeks. Look:
- She’s blissfully happy.
- In a car seat.
- In the back seat.
- Facing backwards.
- Being taken where she needs to go.
- And she has no clue about any of it. She’s just happy.
She had no capacity to comprehend what’s going on. Remember “capacity” from the previous post in this series?
Empowerment is increasing someone’s capacity to make choices and take effective action.
At that age this child had none; it was essential that we elders decide for her; essential when any cared-for person doesn’t and cannot know things, but insulting or silly when the cared-for does.
By now this child’s been raised appropriately, so by age 2 she’d gained quite the capacity to recognize her preferences and use the word “No!” In time she’s become able to dress herself (again with some strong preferences), make choices about many things in life, organize her schoolwork, etc. She has grown.
In the same way, healthcare can work best if the patient and family are informed and engaged to the extent of their capacity – and if their capacity can be developed. (Note that “informed’ includes access to all one’s medical records, not just blood tests etc. As I said in Let Patients Help, “We can perform better if we’re informed better.”)
Do you feel empowered in your care, or “paternalized”?
In the culture of the medical establishment, once upon a time (at least we thought) only doctors knew anything worth knowing, so paternal caring was believed to be appropriate. But as we’ve seen already in this series, it’s no longer credible to expect doctors to know everything and clearly wrong to think anyone else can’t. That age has expired.
To be sure, personal preference still enters into it. I’ve known patients who absolutely want all decisions made for them; to them, being “taken care of” means not having to decide. That’s fine with me, if it’s what someone wants.
Which do you want? What’s important to you? Have you expressed it to your physicians, or do you feel that you could express it, if need be?
By definition, if someone insists on treating you paternally, they’re taking away your power to decide – that’s disempowering. It’s exactly what they did in Bronte Doyne’s case (in principle 5) … in that case the patient and mother were right, the doctors shushed them and she died. Then they apologized. (I’m glad they did. That’s integrity.)
My goal in writing all this is to help healthcare achieve its potential. And I assert that we can best do this if everyone’s capacity is developed and harnessed, as much as they want.
If your case has reached the limits of medicine’s knowledge and you want to go beyond, be sure you have physicians who will welcome your engagement, not keep you in the back seat facing backward. Truly, it might save a life.