What Patients Hear: The Need for Patient Advocates
My friend surprised me a month ago when he visited me at work. I thought the visit was curious because we had talked three hours before he stopped in asking if I would go to lunch with him. He didn’t mention meeting him for lunch. I knew he had a doctor’s appointment that morning. I asked him how the appointment went and he told me it went okay. Then he sat down, looked at me, looked away and said the doctor told him he has cancer. My heart stopped, my mind went blank and I froze. As a single tear traced its way down his cheek I knew he would need someone to go with him, listen to the doctors and advocate for his best interest.
We went to lunch and discussed the diagnosis. My friend’s doctor was setting up an appointment with an oncologist for the next day. After assessing his mood and whether or not he absorbed the information his doctor gave him, I asked him if he wanted me to go with him to the oncologist as his patient advocate. Patient advocates act on behalf of the patient; they help the patient understand what is happening and act as their voice if the patient feels they aren’t being heard.
Since that day a month ago, I have sat by his side listening to doctors explain treatment options, procedures, and lab and test results. Before each visit to a doctor, we sit down and consider questions he would like to ask. After, we deliberate the options he is given regarding treatment. During the time we review the conversation in a doctor's office there are noticeable lapses in his memory of information. My friend heard the procedure which needed to be done and what it would entail but missed the description of cancer, its growth, and why he needed to take certain steps to ensure he maintains his health. When this happened I took the time to clarify what the doctor said so that my friend could better understand what needed to be done.
Last week we visited the oncologist to review the results of his PET scan and second biopsy. The oncologist asked if he was going to another cancer center for a second opinion. My friend confirmed he would be going within the next six days. The oncologist nodded and approved the plan to seek another opinion. Then he started chronicling the steps he thought should be taken to fight the disease. My friend listened, asked questions, and expressed his thoughts regarding treatment. The doctor was finishing the appointment and was ready to leave the room when I reminded my friend to ask what stage of cancer he has. The doctor looked and began to talk about how there isn’t a “stage” but instead different assessments which determine the severity of the disease. He asked if my friend knew the scales used to diagnosis his type of cancer. My friend said he didn’t. The doctor looked at me and asked if I understood the system. I did. Once the doctor heard my reply he began to disclose the levels used to determine my friend’s cancer. The doctor gave him a readout of the PET scan and the biopsies, speaking in a language only those with a medical background could understand. I asked the doctor to spell out what he said in simpler terms.
My friend has stage four cancer. He is facing a tough regimen of chemotherapy and radiation. He will lose his independence because of sickness. What he won’t lose is his autonomy. My role as his patient advocate will safeguard his ability to listen, discuss, and make choices based on what he feels would benefit him. A patient advocate allows the patient time to grieve, discuss, and research. Patient advocates can ease a patient through the healthcare system. During and after treatments patients are asked about the quality of the service but rarely are they asked about how the treatments affected them emotionally. Patient advocates cry, grieve, love and celebrate the defeats and victories that occur during treatment. Patient advocates are friends, allies and staunch warriors in the fight to get well because it is true “No one fights alone.”