Dear Cancer Patient: Don’t Get Lost! (Part 2)

     Last week, I paralleled the experience of a cancer patient navigating the healthcare system with that of the many passageways and blind alleys of a labyrinth. This week I’ll continue the discussion with the next 5 points in the journey where cancer patients get lost.

6.     Procedures: The doctor orders a diagnostic test or procedure such as a biopsy. Many cancer patients are confused and don’t understand why they need to get the test and never follow through. Some patients go for the test but never follow-up on the results with their doctor, assuming that the doctor will track them down. Many patients are confused about how to prepare for particular tests. Do they need to fast? Can they take their prescription medications? Do they need anesthesia? Do they need to go to the doctor’s office, the hospital, or some special facility for the test? Clearly more can be done to make this a simpler process. Providing patients with written instructions that are enhanced with illustrations or rationally designed pictographs may improve patient comprehension and compliance.

7.     Hospital: The average cancer patient may see dozens of doctors, residents, nurses, technicians, fellows, and staff (such as social workers and discharge planners) during a hospital stay for a surgical procedure. Each professional is a source of care and/or information. Sometimes patients may get conflicting information about their prognosis and next steps from different providers and people. Things get even more confusing upon discharge. Most cancer patients do not understand what their next steps are upon leaving the hospital. Who are they supposed to make a follow up appointment with and for what? When does that need to be scheduled? Who do they call with questions? What happens if they are in pain or experiencing complications? What prescriptions do I need to take? Who prescribed them and for what? Having clear discharge instructions is of essence for cancer patients leaving the hospital to ensure patient compliance as well as to improve overall patient satisfaction. Patients, do NOT leave the hospital until you are crystal clear about your next steps.

8.     Insurance companies:  In general, very few people understand the fundamentals of their insurance plan. Yet, people are shelling out thousands of dollars annually for a plan they know little to nothing about. Patients don’t understand what their plan does and does NOT cover.  When faced with a cancer diagnosis, many patients are shocked when the harsh reality sets in that having coverage does not guarantee being full covered. Dealing with insurance companies is not for the easily deterred. Insurance companies are well known for repeatedly denying claims, delaying decisions, processing errors, non-transparency, and confusing their policyholders with insurance-speak. Have a question? Great. Just call the member services number on the back of your insurance card, muddle through the automated menu, pray you’ve selected the right menu option, stay on hold for what seems to be a small eternity to speak to the next available representative, then brace yourself to be endlessly transferred, placed on hold, and eventually either disconnected or told to call your providers billing office. Back to square 1, only more confused and frustrated.

9.     Bills:  Cancer patients struggle with massive medical expenses and bills. Having health insurance doesn’t necessarily guarantee full coverage and eventually balances owed start piling up. While treatments and medical care are expensive, patients need to scrutinize each and every bill that they receive as medical billing errors run rampant in the industry. It has been reported that as high as 80% of all medical billing is incorrectly processed and contains some type of billing error. Patients, request itemized bills from your doctors and hospitals and get out your magnifying glass. Double check any questionable charges with billing departments prior to paying any balances.

10. Automated phone systems: Automated phone systems reduce the likeliness of callers getting a busy signal or being put on hold for extended periods of time due to the routing of other calls. With private practices and hospitals merging into larger facilities, menus of their respective automated phone systems are becoming longer with more and more options to select from. The number of prompts it takes to leave a message for their oncologist may overwhelm patients calling their cancer center. Some patients simply get confused and select the wrong menu option. I’ve been there. You have my sympathy because now you need to hang up and start all over. Even in cases when patients follow the prompts correctly, they may be connected to a voicemail instead of an actual person. Physicians, have you tried calling your own office and navigating your automated phone system? If you haven’t done so already, make sure you make it a priority.

          Navigating the healthcare system and its many uncertain passageways and blind alleys during a cancer diagnosis may become easily overwhelming and difficult. Hiring a private cancer patient advocate will arm you with the expertise and support you need to circumvent the unknown in your journey. You will be relieved of tedious and frustrating tasks so you may focus on what matters most: your peace of mind, recovery, and overall well-being.

 

Dear Cancer Patient: Don't Get Lost!

          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.

Benefits of Hiring a Private Cancer Patient Advocate

Benefits of Hiring a Private Cancer Patient Advocate

 

            Being a homeowner is an extremely gratifying and humbling experience...though I wish someone had warned me about what it takes to maintain a home. From fussy plumbing to full-blown broken pipes and flooded interiors, to birds and various insects creating nests in dozens of tiny crevices, electrical shortages, cable and internet woes, dents, dings, and chips in counters, walls, and paint. The list goes on and on.  All of these “tasks” need to be taken care of either on your own or by hiring a professional. More often than not, you are calling someone to come to the rescue.

            Similarly, if you own a vehicle there is also maintenance involved. Oil changes, tire rotation, brake replacement, filters, spark plugs, batteries, and of course, the dozens of other things that break and need attention. Again, these items need to be addressed and most people see their car dealer’s service department or a local reputable mechanic. The handy may take on some of these jobs themselves (you’ll be seeing me at the mechanic).

            What do we do when something goes wrong with our health? We see a health care professional, receive a diagnosis, and are sent home with a laundry list of tasks to address. In most cases, everyone tries to navigate these tasks themselves.  When it comes to your health, this is no time for a Pinterest type home improvement project. In the midst of receiving a devastating diagnosis such as cancer, you will greatly benefit from hiring a private cancer patient advocate. Why should you hire a private cancer patient advocate? What are the benefits of hiring a private cancer patient advocate? Look no further:

·      Clarity: Navigating our current healthcare system is extremely complicated, with patients encountering numerous detours, mistakes, unforeseen circumstances, and aggravations. Additionally, in light of the new presidency, the future state and complexity of the healthcare system is truly unknown. Throw in a devastating diagnosis such as cancer and one is truly navigating unchartered waters. Hiring a private cancer patient advocate with expertise in the oncology arena will provide you with the clarity and the improved access you need to move forward on your journey.

·      Allegiance: All you have to do is (unfortunately) follow the money. Hospital patient advocates are paid by the hospital.  Essentially they work to protect the hospital from lawsuits, legal fees, and to uphold the reputation of the respective facility. The patient is not the priority. Insurance companies also provide complementary patient advocates. Again, these advocates are paid by the insurance company and are restricted to providing services within a framework that ultimately benefits the insurance company, not the patient. Private patient advocates are paid directly by the client, removing all outside influences of for-profit agencies.  There are no strings attached. You’ll have a professional, dedicated liaison focused on your best interests, outcomes, and safety, all while promoting your rights as a patient.

·      Better outcomes: Evidence shows that patients who are more knowledgeable about their diagnosis and treatment paradigm, who are engaged, and who are more proactive obtain better outcomes in the course of their care. During a critical time in your healthcare (and life), invest in yourself and hire a private cancer patient advocate for your best chance at tackling and navigating your diagnosis.

·      Information: A private patient advocate is a professional strategic ally to provide you with the most pertinent and medically credible information to empower you to make informed decisions about your care. A private patient advocate is able to coordinate and disseminate important information about your care to all key medical care teams to ensure seamless communication amongst all parties involved in your treatment and journey.

·      Support: No one should face a cancer diagnosis and cope with the demands of their illness alone. Having an objective source of factual and empathetic support is truly beneficial in your journey. Hiring a private patient advocate to tend to the distressing and overwhelming tasks of your diagnosis frees you and your family members to channel your efforts on positive and more functional imperatives.

·      Time: Most people with cancer typically comment that they simply “do not have time for cancer”. In our overworked and overscheduled lives, cancer patients worry about how they will continue to complete day-to-day tasks in the midst of their diagnosis.  Many stress over how they will be able to continue to care for their child(ren), how they will be able to be productive at work, how they will continue to maintain their home, or how they will continue to care for an elderly family member, let alone finding time to address tasks associated with their own diagnosis. A private patient advocate can minimize your loss of productivity by assisting in organizing and managing tasks such as following up on referrals to specialists, scheduling diagnostic testing and imaging, coordinating care amongst medical care teams, filing and following up on medical record requests, literary research, maintaining comprehensive medical record histories, filing insurance claims, conducting clinical trial research, etc. Hiring a private cancer patient advocate gives you the gift of time to focus on what’s most important in your life as opposed to spending hours on the phone, on the computer, or buried in paperwork.

·      Peace of mind: A cancer diagnosis is an earth-shattering life event that causes fear, anxiety, confusion, and distress. Many of these feelings are attributed to the unknown. Having a knowledgeable private patient advocate empowers you to have someone in your corner to help you manage your diagnosis and spend the time you need to get the answers to pressing questions consuming your thoughts. During a time of crisis, knowing that someone is passionate about your best outcomes, your safety, and ensuring your patient rights are honored brings immense peace and reassurance so you may focus on your health and wellbeing. Your peace of mind is priceless.

"So, how'd you become a patient advocate?"

My earliest memory of kindergarten is one of my teacher standing over me, yelling something at me in a language I couldn’t understand. I didn’t speak English as we spoke Polish at home. My name was always on the board. My report card said, “Grace cries too much at school”. I was confused, frustrated, and scared. Eventually I got the hang of this whole speaking English thing and became the English translator in the family.  Every time there was an ailment in our family or inner circle of friends, I was there to help translate and navigate. I’ve been trying to make sense of journal articles, press releases, medical terms and disease conditions since I was a teenager.  I always loved the challenge of explaining a complex situation into something simpler. I always loved helping someone through his or her struggle, especially at a time of medical necessity. It was natural that my junior year of high school, I helped my cousin who was in his early 20’s navigate a diagnosis of testicular cancer. My curiosity for cancer exploded. I was plagued with so many questions. Why wasn’t there a cure? In college I fell in love with biology and chemistry. In 2003, I became one of the first 2 women to graduate Drew University with a Biochemistry major.

My fascination and intrigue with the disease morphed into shock and despair when my mother, only 48 years old at the time, was diagnosed with an aggressive form of breast cancer after her first mammogram.  It was I who encouraged her to get that mammogram. Now her life was at stake. I dedicated endless hours to researching, reading, and deciphering. I went to every appointment, chemotherapy session, procedure, and scan.  I kept detailed medical records, notes, and jotted down questions. I filled out endless amounts of paperwork. All the while, as the weeks went on, my mom got sicker and weaker with each passing round of therapy. How could anyone endure this on their own?

Nothing can prepare you for a loved one’s cancer diagnosis. As you start going through the process, you realize how complicated every step is, how gut wrenchingly scary every bit of information is, how absolutely overwhelming everything has become. How everyone tells you to “think positive” when all you are trying to do is to reel in your imagination from running wild with the worst possible scenarios every time you close your eyes. My mom endured a very arduous battle, with multiple surgeries and endless rounds of chemotherapy and survived. This cancer stuff really had some nerve and I needed to know more about it. But to do that, I needed to know more about the body’s metabolism.

I’ve always been intrigued about mechanisms and how things work. I’ve always been a tinkerer of sorts with a little bit of sparkle.  Think Tinkerbelle, without the wings and fairy dust. But I didn’t apply my tinkering skills to typical hands-on work (though I love a good home improvement project). I was fascinated by how the body worked, by all of the ways the body’s individual systems collaborated and worked so beautifully together in concerted harmony. Even more intriguing was what happened when things went wrong.  And so I pursued a PhD in Biochemistry at Albert Einstein College of Medicine (Bronx, NY) under the supervision of one of the most brilliant, dedicated, and intuitive mentors I could have asked for: Dr. Vern Schramm, who at the time, was the Chair of the Department of Biochemistry. My thesis focused on characterizing drugs for potential chemopreventive use in various models of cancer, primarily prostate and breast cancer. Much to the dismay of my mentors and colleagues, I didn’t pursue a career in academia.  The Tinkerbelle in me knew I needed to fix something though I wasn’t sure exactly what just yet.

I left the ivory towers for a career in medical strategy. As Director of Medical and Scientific Affairs, I had the opportunity to work with many top pharma and biotech companies, developing various aspects of their strategic platforms to move their drugs through clinical trials or to give them a competitive edge against other drugs in their class. Physician profiling, clinical trial analysis, competitive intelligence, hospital assessment, key opinion leader sentiment analysis, and various cutting-edge data analytics became instruments in my tinkering toolkit. I loved what I did and then life happened.

One day, a routine test led to my own cancer diagnosis of advanced lymphoma.  Sitting across from my pulmonologist as he directly called the head of thoracic surgery at Memorial Sloan Kettering, all I could think about is, “Am I going to die?”.  My husband and I had just bought a home; we were newly married and looking to start a family. Not cancer. Getting your own cancer diagnosis is completely surreal, earth shattering, and comes with a fear one cannot describe. My palms are sweating right now recollecting the moment. After a few rollercoaster months of tests, biopsies, procedures, and surgery, I was amazingly ruled a misdiagnosis and sent home to recover, shaken and in pain, though cancer-free.

Leaving a facility like Memorial Sloan-Kettering without cancer was a blessing that I am extremely grateful for, fully aware that this is not the reality for the vast majority. It was then as if all of my life’s experiences had suddenly primed me for this moment. I finally knew what I needed to fix.  

There is a big piece missing in this journey through cancer. A gap between patients and doctors.  A gap between information and understanding. A tremendous gap between a diagnosis and the required empathy and support. An immense gap between everything a patient needs to make an informed and empowered decision about their care and the actual patient. I was determined to become a bridge builder and bring clarity now.  My mission became to foster patient advocacy in the oncology space, to empower patients struggling with the disease, to assist patients and their loved ones looking for information, to empathize and listen while vouching for the health and safety of those struggling with cancer; to bring them enlightening results.