My life is not all sunshine, wine tasting and roses... Oh, did I surprise you?
"Most patient advocates are women who have been through some kind of complicated encounter with the medical delivery system, either for themselves or a family member or spouse. “They know what it’s like to feel lost in the system."
Last year my brother-in-law was diagnosed with a very rare form of Liver Duct Cancer. This year he is loosing his battle with cancer. I'm his patient advocate...with him, every step of the way.
|I've been able to stop wearing my walking cast and moved on to Dansko's.|
At some point, most of us will need to care for an ailing parent, sibling, child or friend. These are things I have found valuable...learned in the hospital of hard knocks.
TIPS FOR A PATIENT ADVOCATE
1- For greatest efficiency, working within the stringent HIPAA laws, have the patient sign a formal waiver making you their legal medical advocate, allowing you access to their medical information and test results...and have it notarized. Be certain you carry a copy with you.
2- Be very clear what the patient wants you to help them with. How involved do they want you to be? What decisions, if any, do they want you to make for them?
3- Keep a notebook in hand when talking to nurses, doctors and other care givers...whether you are on the phone or in person.
4- Utilize the Internet and library to learn all you can about the disease or condition the patient is struggling with. Educate yourself on the prognosis and complications that are possible with their condition.
5- Be clear what information the patient wants disseminated to family members and respect the patient's wishes. This is a highly emotional time for family members and you need to remain focused on the patient's needs.
6- Be prepared to ask for help if or when you feel overwhelmed. The patient needs you focusing on their issues, not their family's or your own.
7- Be polite but persistent with medical staff, to be ensure you understand them... and they understand you won't accept "no" as an answer to critical questions.
8- As a patient declines, their wishes and opinions on care expectations may change. It's your job be certain they get the care they require and want.
Here I sit, most every day. He tells me he feels safer when he can see my face, which rips my heart out...but confirms I'm doing the best I can for him.
We called in Hospice this week and hope to get him out of the hospital very soon.
Have you been a patient advocate?