Recently, I had the privilege of sitting on a panel with other parents of children with disabilities and self-advocates (adults with disabilities). The audience was made of doctors and medical students. We all shared our stories.
The audience then had a chance to ask questions. One doctor said he struggles with knowing how to approach patients he may see as not having a good quality of life, then learning that he was wrong about them.
He asked us how we define "quality of life." I thought it was a great question. Not many people really think about it unless they have to.
All of us on the panel had very different answers.
There was a single theme that we all shared, though. None of us focused on our physical or medical health as the limit on what makes a good versus poor quality of life. No, instead we all said that being able to find joy in our lives is what matters. If we can be happy, comfortable (not in pain), and with people we care about, then we all agreed that our quality of life was good.
The life situations were all different. Some of us on the panel had children and spouses. While others liked to be surrounded by friends.
The other things that made us happy were all very different, too. My daughter, Casey, loved to listen to music, watch My Little Pony, swim, dance, or snuggle. If she could do any of these things, she was pretty happy.
The man sitting next to me could not have had a more different answer. He enjoyed rugby, camping, hiking, and thrilling activities that get your heart pumping (things Casey would have hated).
There is no black and white answer to what makes a good "quality of life." Everyone’s answer is unique to them.
For people in the medical field who are not sure how to approach this, I think it’s simple. Keep an open mind, and just ask your patient what matters most to them. As long as you respect their answer, I think everything will work out just fine.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.