Who does what in a health team? Who has control? How does the team deal with questions of competence and capacity. The tension between rights and safety can and often should consume a health team. Can my mother live alone? (Of course I can!) Should my brother drive? (I only drive during the day!) I don’t want to take this medicine the doctor insists I take. (It reduces your risk of stroke.) I can go to my doctor’s appointment alone. (You never come home with the full story.) Our dad wouldn’t have wanted any of this. (He’s our dad, we should do everything possible.)
Everyone I’ve ever spoken to who is a member of a health team – as the person in the center or caregiver – has a story about decisions, control, safety, competence. They all contain frustration, emotion, and consume much energy diverting from the health journey. These are the muscle cramps of the health journey marathon.
What to do? Some of these painful cramps can be prevented with foresight, openness, and active negotiation and problem solving. But many can not. I talked with my mother annually for more than 15 years about end-of-life decisions. It wasn’t until several years ago that she could engage. It was worth the persistence. She’s clear now and has the capacity to be clear. When capacity is already diminished, caregivers can often have trouble recognizing that persons in the center of care have choices. In these case, caregivers can emphasize safety over choice, to the detriment of the rights of the person in the center of care. When capacity dribbles away slowly its another set of challenges. Does the person recognize that their capacity is drifting? Do the caregivers have options to ensure safety – other caregivers, safer settings? In these cases the challenges can only be mitigated through open family communication, assigning of responsibilities, persistence and presence. And self-care. No magic bullet here. How have you faced the muscle cramps?