Merriam-Webster defines a labyrinth as a place constructed of or full of intricate passageways and blind alleys. The image offers an excellent representation of a cancer patient’s journey through the healthcare system. Our healthcare system is complex, fragmented, and filled with intricate passageways and blind alleys. Cancer patients trek through the labyrinth while fighting their disease. In this first post of a 2 part series, here are 5 of the top 10 intricate passageways and blind alleys where cancer patients get lost in the healthcare labyrinth.
1. Diagnosis: The majority of cancer patients get lost right after their diagnosis is delivered. Honestly, who wrote the terminology for diagnosing cancer?! The doctor may say, “Your biopsy results were positive.” and the patient sighs with relief, “That’s great news doc! I’ve been hoping for positive results!”. No, positive results in this case signify confirmation of cancer. The reality is, as a patient, you want negative biopsy results. The doctor continues, rattling off a number of abbreviated diagnostic tests, “We need to schedule a CT, PET scan, and take a look at BRAF, KRAS, and CEA markers. Make a follow-up appointment with me once you get those done”. That was basically alphabet soup. Most patients do not have the health literacy needed to understand the medical jargon used during their appointment with their doctor. Many are too embarrassed or scared to interrupt and ask a question or ask for clarification. Doctors, when you see your patient wearing a “deer in headlights” look and NOT asking questions, stop and start again.
2. Internet: Patients typically start looking up their symptoms, diagnosis, and treatment options on the internet. While the patient is trying to be proactive, it may be very difficult for them to select medically credible sources of information. The downward spiral begins. The internet is filled is thousands of misleading sites, many with outdated content, incorrect statistics, deceiving information, and advertisements for herbal supplements and therapies that have no proven clinical efficacy nor are approved for use in patients. In the midst of a cancer diagnosis, people are vulnerable and fall victim to resources that are too good to be true. Personally, I love when celebrities and people who have zero medical training become self-proclaimed experts in various disease states and begin advising what patients should be doing. Patients, please! Suzanne Somers is NOT a medical expert in cancer! A better choice would be to refer to the National Cancer Institute or the American Cancer Society.
3. Finding A Specialist: Your doctor suspects you have cancer and tells you to see a specialist. He or she may offer a referral to a specialist. Is that person the right fit? What if the referral is not covered by your insurance? What if your doctor doesn’t refer anyone? Patients struggle with finding the right specialist to manage or confirm their diagnosis. Don’t just take your co-workers recommendation or neighbor’s experience as gold standard. Patients, make sure your doctor is at minimum board certified and specializing in the cancer in question. If you wouldn’t hire an unlicensed plumber to do all of the electrical work in your home, don’t schedule an appointment with a non-board certified plastic surgeon to manage a your breast cancer diagnosis.
4. Medical Records: So you’ve scheduled an appointment with a specialist, such as a medical oncologist, and now you need to bring a copy of your medical records to the consultation. Individuals have a right under HIPAA to request access to their medical records. The process should be straightforward, right? Nope. Many medical record requests are misplaced and never completed. Patients struggle to get updates on their requests over the phone as more and more health information departments are deferring to automated phone systems with no chance at getting connected directly to a person in the office. In many cases, only portions of requested medical records are released or incorrect information is being released. Some medical record requests are denied and never released. Patients are frustrated trying to get access to records that rightfully belong to them. The advent of electronic health records will hopefully solve this problem one day. Ladies and gentleman, we are not there yet.
5. Prescriptions: Many cancer patients undergoing active treatment take additional medications for co-morbid conditions. Some patients self-medicate with over-the-counter (OTC) medications, vitamins, supplements, and herbal remedies. Keeping track of all of the medications, what they are for, the doses, when and how they should be taken may become a daunting and confusing task. During active treatment, cancer patients may be dealing with difficult side effects and may forget to take a dose or accidentally take too much of a particular drug. The results could be perilous. Patients often times fail to fully disclose all of the medications they take to their doctors which puts them at risk for drug interactions and for diminishing the efficacy of their prescribed regimens. Detailed record keeping of all medications and complete transparency is key for cancer patients’ safety and health.
If you have experienced these or other places of confusion during your journey through cancer, I would love to hear your thoughts. These are just 5 examples of situations where hiring a private patient advocate would resolve any confusion one may be experiencing. Stay tuned for part 2 of this series next week.