How To Be A Patient Advocate

When you assume the role of patient advocate for someone you love or care about, you will be playing a very important role in the safety and security of the patient. Be sure that the staff knows that you will be advocating for the patient. Because of laws regarding patient confidentiality ( HIPAA: Health Information Portability & Accountability Act of 1996; http://www.hhs.gov.com) the patient will have to sign a form designating you as their advocate. People absorb a lot less information when they are sick, anxious, vulnerable, in pain or undressed. They have a voice, but they may need someone to advocate for them!

If you accept this role, you should plan on being with your loved one as much as possible. There might be times when overnight support is necessary. If you are unable to do this yourself, you can certainly get someone else to assume the role when you are unable to do it. Your loved one will be at ease knowing that you will be there to protect them and intervene on their behalf. As an advocate you can ask questions that your loved one may not think about when they are stressed, confused, unconscious, or undressed. You can use your voice to ask about diagnosis, prognosis, medications and diagnostic tests. You can write things down to share with the patient later on. You can remember answers to questions the patient has asked. You can speak up for your loved one when your loved one cannot speak up.

It is always helpful if you know the kind of care the patient desires if the patient is unable to make decisions regarding that care. You should know if the patient has any Advance Directives and how to access them. Go over all consents for treatment with your loved one. Make sure you both understand exactly what you are about to agree to. Know who to call if the patient’s condition worsens.Your loved one has a voice, but may need someone to speak for them!

Items You May Need While Being a Patient Advocate:

  • sweater or jacket
  • books, magazines or pocket games
  • snacks and drinks
  • pencil and paper
  • comfortable shoes
  • deck of cards
  • cell phone and charger
  • personal items in case you are away longer than expected, including your own personal medications

Terminology:

Advance Directives: a written statement that you complete in advance of such time that you cannot make your own decisions, such as during a serous illness or severe traumatic event. Your Advance Directive will outline how you want medical decisions to be made in the event you cannot make them yourself.

Advocate: One who pleads the cause of another; one who supports, defends, and verbally recommends a cause, proposal or line of action; advisor or supporter.

Diagnosis: The nature of a disease; the identification of an illness.

Prognosis: The expected course or outcome of a disease. 2. The patient’s chance of recovery.

Anecdotes:

We brought our son, Philip, to the ER with complaints of severe abdominal pain. The ER doctor gave him the narcotic pain-reliever morphine and he felt better. No diagnosis had been made but the ER doctor told me that since Philip had no more pain, we could take him home. I was not comfortable with that because it had only been 2 hrs since the morphine had been administered and I was concerned that when the medication wore off, Philip might be in severe pain again. The doctor was insistent that he go home and I was insistent that we didn’t have enough info to take him home yet. when I questioned his decision to send my son home, the doctor got very nasty and walked out of the room. I sent my husband after him and while he was gone I took my memo pad and starting jotting down questions to ask the doctor upon his return. When he came back in with my husband, I remained very calm and just starting asking my questions. ” How can you send him home without a diagnosis? How do you know that the pain is permanently gone? How do you know that my son is not in trouble? ” I ignored the fact that the doctor was upset with my assertiveness because at this point this was all about my son’s safety and security and not about me or the doctor. I was adamant about not taking my son home until my questions were answered to my complete satisfaction. The doctor said that since I was so against my son being discharged that we could call in the hospitalist physician. By the time the hospitalist got there, my son was in severe pain once again. The hospitalist determined that my son should be admitted.

It’s my child- I am the Voice. No one knows or loves their child better than a mother. I was adamant about not taking my son home until my questions were answered to my complete satisfaction. At this point this was all about my son’s safety and security and not about me or the doctor. If your instinct tells you that something is not right, keep advocating for the patient until someone satisfactorily addresses your concerns. Bring a note pad with you either when you are the patient or the patient advocate. Write down all of your questions so you will be sure to get them all answered… in language you understand.

I took my son to the hospital Emergency Room (ER). He has a complex medical history and this was one of many hospitalizations. While we were in the Admitting area, a Certified Nursing Assistant (CNA) came to perform a routine platelet count by way of a finger stick blood test. When I asked her why she was doing it and who ordered it, she told me that it is hospital policy to do this test routinely on all new ER admissions. ” This is what we do “. I explained to her that I wasn’t comfortable with that explanation. She was insistent on doing it. I was more insistent on her not doing it. She walked off angrily, slamming the door behind her. When I discussed this with the triage nurse, she told me that I had done the right thing. The admitting doctor was certainly going to order a complete round of laboratory blood tests to be drawn from his vein, and so there was really no need to subject him to an unnecessary finger stick. You have a voice… use it to protect your child!

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