“The definition of an advocate is someone who fights for something or someone, especially someone who fights for the rights of others.” We advocate for ourselves, when we speak up for what we need and ask questions of our doctors and other healthcare providers. A family member or parent can speak for someone who is not able to speak for themselves due to age or illness. This sounds easy and straightforward to do, but in my experience it is “tricksy” as Gollum would say in “The Lord of The Rings.”
Several posts ago, I shared with you about my experiences with cataract surgery. Some of my experiences were very unpleasant. I purposely put off returning my patient questionnaire, because I did not want to write comments from an angry place. I filled out my survey a full month after my second surgery and turned it in with my last eye doctor appointment. I tried to just state my experiences and my feelings about those experiences.
The next day, I got an angry phone call from the office manager. She essentially told me that my comments weren’t true. I had to keep repeating that these comments were my opinions and the questionnaire asked for my opinions. There was no acknowledgement from her that my experiences were even true. I was furious! Sometimes when we try to speak up for ourselves, the other person doesn’t think there is a problem.
Another problem with advocating for ourselves or others, is that sometimes the healthcare provider has jumped to conclusions about what is wrong and how to fix it without first listening carefully to what we have to say. I experienced this when I was supposed to be an advocate for a family member. I watched in shock as a trusted doctor jumped to conclusions, ignored everything that was said, and then got offended when the family member got upset. I am not a quick thinker on my feet, so I was basically worthless as an advocate in this case.
The next day I wrote an email to the doctor explaining our concerns about a certain medication and its side effects. This doctor ended up not being a good match for my family member and we had to find another doctor. Sometimes we need to step back and think about how best to communicate what we need to our doctor. It’s okay if we wait until after we calm down to try again. It may resolve the issue or it may not.
Sometimes choosing the best treatment path is really difficult, because the proposed treatments have serious side effects and/or are not 100% effective. Then we have to make hard decisions about the possibility of lengthening life versus quality of life. I found myself in this position when my child was diagnosed with stage 4 cancer at age 3 1/2. It was excruciating to choose to give him toxic medication that had about a 40% or less chance of stopping his aggressive cancer.
When that treatment did not work, we ended up in the land of medical trials. The best-chance choice required spending three weeks every month far away from my other children and husband. On top of that, it required frequent bone marrows, medicine that would make my child constantly sick, and my trust in a doctor and staff who I felt were more concerned about their research than about my child.
After a visit to that hospital, I called my son’s cancer doctor in tears and told them that if this was the best they had, I would rather my child live out his days without the added misery of treatment that would not help anyway. His cancer doctor was very understanding and kept looking for a trial that we could do from home. The second trial we tried cleared his cancer up completely and he has been cancer free for 2 years. He is our miracle kid, because God healed him when modern medicine could not. As agonizing as this experience was, I credit his oncology team for working closely with us to come up with the best plan for my son. This kind of care is out there. If you have not found doctors like this yet, keep looking.
Advocate for Yourself
Advocating for ourselves is also really hard when we are very ill. It is at these times that we need friends or family members to keep an eye on what is happening in the hospital. Your advocate needs to ask the questions we would ask. Talk to your chosen advocates and let them know your preferences for care in an emergency. They especially need to know of any allergies you have, any procedures that have caused unexpected problems for you in the past, and your medical history.
Write this information down for your loved ones in order to get the care you need. This enables your advocate to know best how to help you. As uncomfortable as it is to think and talk about, we need to create a healthcare power of attorney document and a living will. These legal documents ensure that your wishes are carried out when you cannot speak for yourself. Find further information about these documents here.
Tips for Advocating For Yourself or Others
- Do your research-learn all you can about your condition and treatment options.
- Think of yourself as an important part of your healthcare team.
- Be assertive, not aggressive. Angry words get tuned out so that the message gets lost.
- Keep good records.
- Take someone with you. Two sets of ears are better than one set.
- Doctors, nurses, etc. are people too. We all make mistakes. Don’t expect them to perfect.