An Advocate's Life
by Katie Shockley
In this day and age of hospitals and specialists, everyone needs an advocate. Many in the medical field tell you to be your own advocate. Well, what do you do when your hearing is bad, your memory is slipping, and you are too sick to really understand what is being done around you and to you? That is when our aging parents need us to be their medical advocates.
In the past fifteen months, I have become my father-in-law’s primary medical advocate. Since Ray lives closest to us, and I do not work fulltime, I fell into the role by default and necessity. I planned to share the following story as an example of advocacy, but the results also lend themselves to an example of accepting the reality that advocacy does not catch everything.
After a recent stay in the hospital for breathing complications, Ray’s pulmonologist wanted him to have a bronchoscopy, a test in which a scope is put down the trachea to take a tissue sample for a biopsy. I requested that the doctor get a copy of Ray’s records from the year before when the same procedure was done. Ray reacted adversely to the anesthetic, and I wanted to be sure that we knew which anesthetic it was before we subjected him to the same outcome as before. Advocacy abounded! I patted myself on the back for raising the question and for protecting Ray from another stay in the ICU. Way to go, Advocate Extraordinaire!
The pulmonologist called me the following week and asked me why we never told him that Ray has lung cancer. I said that we were told at the time that the first test’s biopsy came back with inconclusive results. The doctor said that we were given some bad information. In the requested hospital documents, there was the pathology report clearly stating that my father-in-law did indeed have lung cancer. That pathology report was fourteen months old. Ray had lung cancer for fourteen months, we did not know it, and nothing had been done about it.
Believe me, I hounded the doctors and nurses fourteen months ago for the results of that bronchoscopy. Advocacy abounded then, too! The pulnomonologists and internists at the time said the same thing – the test was inconclusive. They all suggested that Ray have a needle biopsy, but the word “needle” rarely leads to cooperation from him. I must assume that even the doctors at the time did not see the pathology report that is so present in his records today.
Everyone needs a medical advocate. But the advocate must face the reality that advocacy is not a sure thing. Even though I have done my best to defend, protect, and be a databank for my father-in-law, I cannot do everything. Mistakes can still be made, and information can still be lost.
Jesus calls the Holy Spirit “the Advocate” in John’s Gospel. One of the jobs of the Holy Spirit is to remind us of Jesus’ teachings (John 14:26). We sense God’s presence through the Advocate. The disciples feared Jesus’ departure and God sent the Holy Spirit to fill that void. Most of us fear the unknown of our futures, especially medical uncertainty. As God’s coworkers and representatives in this world, God sends us to love our neighbors, friends, and family. Medical advocacy is one way to be the voice of God’s love and care for our loved ones.
To all the advocates out there I say “hang in there! Your job is important! Keep pestering and keep asking questions!” Sometimes an advocate’s job is to listen and sometimes it is to shout. Do your best, then forgive yourself when the best is not good enough.
Dear God, I pray for caregivers today. Give them strength and passion. Give them power and gentleness. Give them Your peace. Amen.
This guest post submitted by Katie Shockley, licensed local pastor of First UMC Sachse. You can connect with Katie at her blog.