People at the center reflect often about quality of life – Sometimes in relation to decisions about medical care as in, I’d rather have quality of life than chemotherapy or for the disabled, we value individuals experience and quality of life. What does quality of life mean? Whose quality of life? I find it hard to separate quality of life of the person and their family caregivers – so intertwined and mutually dependent.
Distilled from my personal and professional lives, I’d say that quality of life included:
- Control of life – real choices
- Understandable information to make those choices
- Peace of mind
- Rest – a break
- Treated respectfully
- Recognized and appreciated
- Relief from pain and worry
- Reduction in controllable stress
- Connection to others – not alone
How do we know what a specific person values for their quality of life? There’s an art to listening to and understanding people’s experience and values. That art is only compounded for those with cognitive and communication challenges. Plus most of us move along the challenge continuum to more difficult, the more acute, the more chronic, the more disabled our person at the center is or becomes. I’m working on that listening challenge. I welcome any advice, thoughts, or expertise.
