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Do You Have Consent To Speak For The Adult PH Patient?
The big task my son has taken on in 2020 is transitioning from pediatric to adult care. It’s been made clear that I will no longer be able to speak for my son. During appointments he will have to answer all the questions, express concerns. This extends to home life where he will have to deal with insurance and medication refills on his own.
As much as I understand the importance of him becoming responsible for his own care. I think there should be more understanding that when battling something as serious as PH or transplant, even adults need help and support with their advocacy.
A more serious side of my concern is moments when he might be too ill to effectively speak up for himself and remain focused enough to answer questions.
If you are a caregiver or patient with the experience of transitioning from pediatric to adult care, how have you dealt with the concerns I have expressed? In what ways and how often do you participate in medical discussions whether at a doctor’s office or hospital? Do you have something in writing that gives you permission to speak for your loved one as needed? How did you make these arrangements?
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1 Reply
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Hi Colleen. My mom just recently joined so I would like to introduce you both! @jenniferfoster . I have given consent at many of my doctor’s offices to allow my mom to have access to my medical files and have also made her my health care proxy so she can speak for me when I can’t or IF I can’t speak up for myself in a situation. Does your son have you as his health care proxy or have written consent somewhere in doctor’s offices. I know they usually give a form for HIPAA about who they are allowed to share the information with.
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