We need to help people understand their rights to information (and to privacy) when they choose to help care for a family member. The article points out many barriers to family members effectively assisting in the care of loved ones.
This situation seems similar to writing one’s last will and testament.
- It needs to happen before it is really needed.
- It can be an uncomfortable discussion
- It is fraught with family dynamic complexities
- It can greatly reduce later distress
The difference is that this is not about “stuff.” It is about helping improve the outcomes for patients. We need to find a way to educate people about the intricacies of HIPAA, how to authorize others to speak with their healthcare team and how to ask the right questions.