I recently saw a quote from Andrew Weil on a friend’s Facebook page. It reminded me that so many people feel they must stay with a doctor, a hospital, or another healthcare provider with whom they think they cannot ask questions or communicate as they are too busy. People (patients and family members) say that they don’t want to say anything about a negative experience or questions they might have for fear of being labeled a problem. As a nurse advocate, I tell my clients that it is essential for them to use their voices to let providers know they have questions or concerns and what they are.
I get it…healthcare is not a friendly system. It is complex, stressful, and has rules that make it hard for the average person to know how to handle sensitive situations they run into.
This is why everyone needs an advocate when they enter the healthcare system. They need an objective person to help them through the process, ask the questions they want to know, start a conversation with a doctor, nurse, pharmacist, or other professional about their care, and be treated with respect. An advocate can be a family member, friend, or a paid advocate—someone who you trust and can be open and honest with about your care and concerns.
This reminded me of a situation when I was diagnosed with a brain tumor in 2014. I was driving home from an eye doctor’s appointment and hit the curb – blowing out the tire. I could not drive the car, so I called my husband to pick me up. When he got there and after asking me if I was OK and assessed the sitatuion– he said that I did not look right at him. I was not sure what he was seeing, but he said we should go to the hospital. We went to a small community hospital as we thought whatever he saw was minor. The ED doctor talked to us and said he wanted a CAT Scan. Once the results were back, the Doctor sat down and told me I had a brain tumor and would need to be admitted. He was going to consult with the neurosurgeon who was on call. The next day, a few of my case management friends came to the hospital to see me and find out what was happening. We were talking when the neurosurgeon came into the room. He looked at my friends and asked my husband if they were attorneys. My husband said no; they were my case management friends and were there to see how I was. He said they could stay but could not take any notes. We were all confused but he told me what he would do. He said I am going to take you to the OR, drill a hole into your skull and take a piece of the tumor, test it, and then get you to an oncologist. OK…and went to walk out. I asked him, Doctor, if this was your daughter or wife, who would you send them to? He said, me, I am the best.
I felt uncomfortable with his answer, and so did my friends. After he left the room to get the consent, my friends asked my husband if he would allow them to see if they could find another neurosurgeon who was at a teaching hospital, as the hospital I was in was not appropriate for them to have brain surgery.
After my friends left, they contacted people and found a neurosurgeon from the University of Miami who could see me immediately. Later that day, when the Doctor came back, we told him we wanted to g down to the University of Miami for a second opinion. He said, “Why would you go to Miami when I can do this here?” I said I preferred to be in a teaching hospital. He was not happy but said he would discharge me.
The next day, I went to see the neurosurgeon, who was caring and supportive. After he explained what he would do, he asked if we had any questions. He said he would take good care of me, and once the results were back, he would get me to an oncologist who specialized in the type of tumor I had. It was a different experience for this Doctor than the other one from the community hospital.
After the results were in from the biopsy, the neurosurgeon’s office made an appointment for me with a hematologist/oncologist who specialized in my tumor type. I went on my journey from there. I was so lucky my friends had been to see me in the first hospital and took the initiative to help us find another doctor who could treat me. My journey was difficult, but my husband and I knew we were in good hands. I feel I am here today due to my friends’ interventions.
This experience made me realize, for the first time in my 40-plus nursing career, how important it is to have an advocate when thrust into the complex healthcare system.
I hope this post shows you that you do have choices as a patient. It is not always easy to speak up, but it is important that we advocate for ourselves. If you are too sick and can’t advocate for yourself, find an advocate—a family member, a friend, or a paid advocate—who can be with you on your journey. They are worth their weight in gold!
Thank you for reading. If you have a comment or want to share your experience, please leave one in the chat.
I hope you have a good week!
