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Reality Bites…Tips For A Patient Advocate

Reality Bites…Tips For A Patient Advocate
My life is not all sunshine, wine tasting and roses… Oh, did I surprise you?
Tips on being a medical advocate

 

“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.”
~Forbes

 

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.
Nursing Clog
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.

Dansko clogs

 

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?
Post script-
Your comments have been removed by a hacker this summer. When I refused to pay his extortion demands, he began to remove my comments. Protect your passwords!
Best,
Jennifer

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2 Comments

  1. Cheryl Ann
    May 19, 2019 / 5:52 am

    You are more than a patient advocate, Jennifer. You are an angel! Taking good care of your brother is a gift that you both will benefit from. So glad you found a home near your Grandson, too. Bless you, my sweet friend. I was a patient advocate for survivors of sexual assault for over 10 years and received more blessings from this job than I ever gave. My patients were grateful and usually thanked me profusely, so I feel I did a good job; they never understood how much they gave me with their courage and commitment. I am blessed to have had this experience. I am a survivor of sexual assault, also.

    • May 19, 2019 / 9:04 am

      Thank you for sharing your story Cheryl Ann. Being an advocate for my brother in law was one if the most moving experiences of my life. I was an advocate for both of my parents as well, but this was different and more powerful in many ways. Not everyone in the family agreed with choices I helped him make but my soul is at peace because he passed in the way he wanted to.

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