Hello everyone! This issue of the Journal of Oncology Navigation & Survivorship provides continued information and knowledge learned at the 2013 Fourth Annual Navigation and Survivorship Conference. Music & Medicine [ Read More ]
February 2014 VOL 5, NO 1
Can I Trust You?
I do not think my situation is unique. I live in a large city with horrendous healthcare. If you do not live in such a city, you may not believe that I live in the United States. I do. Most of you, I imagine, live in places—urban, suburban, or rural—similar to mine. Hopefully, because you have not been seriously ill, you do not know it.
I started going to an oncologist a full year before I was told that I was really sick. He was recommended as the best oncologist in the city. For a full year, even after he got a biopsy result that said I was really sick, he told me on my monthly visits that one morning I would wake up and all my tumors would be gone. He constantly asked me, “Do you want me to give you chemotherapy?” “Only if I need it,” I would reply, assuming that as a board-certified doctor he would know. I never got chemotherapy in my home city.
In September, he recommended I go to a major cancer center 700 miles from my city, the closest reputable cancer hospital that my insurance covers. I asked if it was an emergency. He told me it was not. Due to work considerations, I decided to go in December and kept seeing him every month. By the time I got to the cancer center, my cancer had turned highly aggressive (studies say this happened in September, but I was never alerted). I am still in treatment with an uncertain prognosis.
After 8 months living in another city to get care, supporting 2 households, uprooting some of my children and forcing others to pass almost an entire school year without their mother, modifying my employment conditions, and accruing tens of thousands of dollars in medical and living expense debt, I am back in my home city because I have to be: my employment and my younger children are here. When my story got out through the grapevine, I heard other tales of healthcare woe from numerous friends and acquaintances. For example, a friend in my city brought her toddler daughter in to her pediatrician suspecting she had diabetes and was told to give the child apple slices with honey on them, which sent the toddler into a comatose state, requiring a frantic transport to the hospital, where she was diagnosed with diabetes. An acquaintance’s mother had lost most kidney function and was given medicine by the specialist treating her for her kidney problem—this medicine further reduced her kidney function. My son’s friend’s mother was given medicine for her supposed bipolar disorder (apparently diagnosed based on the doctor’s “extensive experience” in detecting the disorder), fell asleep for 3 days without moving, was brought back to her doctor who conducted no tests and told the family not to worry, still did not wake up, was rushed to the hospital 24 hours later by her son, and died of an aggressive brain tumor 3 months after her wrong diagnosis. The stories kept piling up, and the outcomes kept being the same: those who stayed in my city got worse/died, and those with the resources (insurance coverage, time, and money) traveled hundreds of miles and accrued debts big and small, to get treated. Mind you, I live in a city, not in a rural area.
So, now I am back here. I am shellshocked, nervous, and sick. I have prescriptions that are running out and need to be filled. I called my local pharmacy to transfer my prescriptions. The assistant told me he would call me in a few hours when he confirmed the transfer. He never called. I called back the next day to find out what had happened. Another person answered the phone this time. She told me my prescription was ready.
I went to the drive-through window. I got my prescriptions through the metal drawer, placed in the drugstore’s marketing-laden bag, stapled shut. “Do you want to talk to the pharmacist?” the teller asked me. I saw no reason to do so. I had been taking these medicines for almost 8 months, now. What would I have to ask the pharmacist?
When I got home, I realized I should have asked some questions. The medicines I was used to had been substituted with, I imagine, ones that are generic. I did not recognize any of the names. I opened the bottles. The pills looked nothing like the ones I normally took; mine had both been white, and one of these was blue. The label did not have the same instructions as the original bottle.
I started to panic. Had some sort of mistake been made? My interaction with the medical establishment in this city had conditioned me to not trust the work of the medical experts. I called the pharmacy. The recording told me to hold on as the pharmacy was “serving other customers.” My call, it said, was very important. I waited. Five minutes passed. Ten minutes passed. I got annoyed and hung up. The comment of a pharmacist at my cancer center rang through my head. “There are retail and research pharmacists,” he told me. “Obviously, research requires higher qualifications.” I called back. I heard the same recording. This time I vowed to wait. Eventually, after almost 15 minutes waiting, someone answered. “Hold on for the pharmacist,” she said. I waited another 2 minutes. The pharmacist finally answered. Upset because of both the labeling issue and the long wait time, I had little patience left. “Are these the correct medicines or are they not?” I demanded. Kindly, he had me read the labels on the 2 bottles, one from my cancer center, one from the retail outlet that employed him. “Yes,” he told me. “They are the same medicines.” “Thank you,” I told him and hung up.
This experience did little to encourage my trust in the pharmacies/pharmacists in my city. I know that for whatever reason, not all pharmacists want to go into research or become a doctor of pharmacology. For many, the PharmD degree and other legal requirements to be a pharmacist suffice. This is probably better for patients, too, who may not always need someone with a PhD. I know, too, that no medical research takes place in my city; everything is retail based. But, regardless, it would be really nice if pharmacists (research or retail) could acknowledge a few basic facts:
- Patients, by the time they get to the pharmacist, have often been traumatized. Perhaps they have just found out they have cancer or another life-threatening illness. Perhaps, as in my case, they have had horrific experiences with the medical establishment in their region. Perhaps their lives have been changed and then changed again, over and over, as they look for the alternatives they can afford for care. Regardless, even though as a pharmacist at a retail outlet you may be under lots of pressure to make a larger profit by getting out as much medicine as possible to as many patients as possible, please make answering phone calls promptly a priority. If even in a retail establishment part of your job requires serving patients, please do so by not making them wait for extended periods of time. Disgruntled customers can really eat away at profits!
- Dealing with the familiar helps patients, most of whom have nowhere near your knowledge of their medicines. Within the legal requirements, when working with a transferred prescription, include as much similar information on one bottle as on the next. Since you have to call to confirm the prescription anyway, can you simply ask for what information is on the previous bottle’s label? For example, on my original prescription bottle, the instructions said “Take on Monday, Wednesday, and Friday.” The new label contains none of that information. However, because I kept both the new and the old bottles, I know it.
- Train the frontline window people to explain a little bit about the medicines they are giving out. Much of my concern could have easily been averted had I been told that one medicine had been replaced by a generic one. I know it is legal to do this and supposedly causes no harm to the patient, yet I still would have liked to have been told that it had been done. Also, I would have liked to have known that one of my medicines could come in different colors. If I had simply been told at the drive-through window something like, “This medicine comes in different colors. I do not know what color your other pills were that you got from your previous pharmacy, but these are blue,” my doubts would have been allayed. I may have still called the pharmacy to double-check that all was as it should be, but I also certainly would have appreciated a little additional information right from the start.
Trust between the patient and his/her medical team is crucial. Pharmacists, as part of that team, need to build trust. I do not even want to feel that the question “Can I trust you?” is one I need to ask. I want to have complete confidence in your abilities. Help me build it.
MMA is undergoing treatment for cancer. She wishes to use her initials.