Managing Healthcare Challenges, Part I

If you’ve followed me on this blog or social media for any length of time, you’ve likely been exposed to some of the frustrations I’ve experienced when accessing the United States healthcare system as a terminal cancer patient. Prior to my diagnosis of Stage IV Metastatic Breast Cancer (MBC) in 2017, I’d rarely accessed the healthcare system outside of having two (2) children, one by a scheduled C-section because of my eldest’s position and the other an emergency C-section after 26 hours of labor because my second son was tangled in his cord. As I’ve shared on this forum before, my efforts to have a VBAC (Vaginal Birth after Cesarean) with my second son was the first time I pushed back against the recommendations of a healthcare provider and it was extremely eye-opening.

You can read and listen more to some of what I’ve learned through these videos I’ve worked on with The Patient Story here.

But here’s the thing — there’s no training or blueprint for how to interact with the healthcare system successfully as a patient, and especially not those of us who have some really complicated health issues. Every health system (and I’v been treated at nine (9) different ones) is so very very different. What works in one context oftentimes doesn’t work in others. What I might do to advocate for myself is also not something that feels comfortable for anyone else.

After having some lengthy conversations recently with multiple patients (newly diagnosed and otherwise), here’s some of the hard won experiences I’ve gathered over the the last six (6) years of living with MBC:

1. Remind yourself that everyone you are dealing with is a human being. Yes, the person in front of you might have decades of education and training and experiences and that can be intimidating. Yes, there are many things that happen behind the scenes that we will never know. Keep in the forefront of your mind, always, that the person you are dealing with is a human being first, just like you.
2. Set the tone from the beginning with each provider as to how you want to handle your medical care. When I was actively practicing law, I always told clients that we have to be a team in order to achieve their goals. For that team, I would bring the legal knowledge and experience, while the client brought the facts, the lived experience. To be successful, everyone on the team has to be participating fully. I see this as analogous to dealing with the medical system. Our medical teams bring their expertise, their training, their ideas, while we, the patient, bring our lived experience and the application of that medical knowledge to our lives. For me, communicating this division of labor and balance of power is key to a successful doctor/patient relationship.
3. Identify those doctors/groups who serve as the chairperson/coordinator/quarterback of your medical team. For many people, this is their PCP (primary care physician). For those of us who are living with terminal cancer, this person is usually the medical oncologist. Doctors are incredibly siloed these days and one person having a Birds Eye view of all that is happening is so important so that nothing gets lost (medications is a key area as well, for someone to be overseeing, in light of potential interactions). For those of us who are treated by practitioners who aren’t in the same hospital system, including those really important second opinions, coordinating and communicating can be a lot of work so figuring this out ahead of a crisis can be really important.
4. Once you identify the point person/coordinator/office of your care, ask a lot of questions. Every doctor handles this responsibility differently and it’s important to know if the doctor or other team member is your point of contact and how they prefer to receive/give communication outside of the actual medical appointment. One medical oncologist I’ve had would consistently call each of the specialists on her cell, this sometimes occurred during appointments, and was often during her off time. She made sure that every other doctor I saw knew she was watching them and I so appreciated this effort because I got better care.
5. Consider communicating with key doctors (like a medical oncologist) with questions/concerns/ideas/topics ahead of any appointments via email, text, patient portal, smoke signal, whatever works for that doctor and let them know if you need extra time. As a lawyer, I often had clients ask me questions that I’d not prepared to answer. It takes a lot in the moment to say, I need to research this and get back with you. I’ve found that giving my team a heads up when there is an important decision to be made can really help everyone be prepared and this also helps provide a blueprint for the discussion. For those of us who struggle to remember what we meant to bring up in an appointment, having the email or message as a roadmap means we also might not miss something important.
6. Understand the time limitations. Everything takes time. Appointments, scans, scheduling, everything. Each medical system has their own parameters for the time our doctors spend with us, the time interval for the results of a scan, how schedulers work, etc. Finding out and knowing what time periods are proscribed by the health system helps to set expectations and know when a protocol has not been followed. For instance, I get my scans at the Mayo Clinic and outside of getting top notch care, their requirements for PET scans is that the results are peer reviewed/over read within the radiology department and the final result is provided within six (6) hours. It takes effort to travel the 2.5 hours to get scans in Jacksonville when I live in Orlando, but that effort is key to my quality of life and managing the scanxiety that seems to build over time.
7. Be really familiar with your health insurance policy language. Whether you have private insurance or some other way of paying for your healthcare, the contract governs how that insurance company will interact with you and your healthcare providers. Whether this is the time requirements for responding to a prior authorization or which providers are in network or the process for getting a PET scan completed, that contract affects nearly everything we encounter as patients. Understanding what to expect and what your healthcare providers can expect can be key in managing not on your care but your quality of life while getting said care.
8. Fill out EVERY SURVEY. Healthcare offices/systems are data driven. If they don’t have data, the issue/problem doesn’t really exist in a way that the system can address. By filling out surveys with good things and challenges, we are providing the data they need. Be specific, use names, dates/times, context, etc. The more information we can provide a patients, the better the system can address needs.
9. Judiciously file complaints/grievances. Sometimes filling out a survey isn’t enough. Sometimes there are places where the system is broken. Sometimes healthcare workers ignore the processes and protocols. Choose those triggers that need to be addressed the most and use the complaint process. For me, this is schedulers making appointments without calling me, that’s my hill to die on. Social media can also be a way to get responses or intervention as needed.
10. Always always always ask these questions: 1) How can I be a better partner with you to achieve my healthcare goals?; 2) What can I do differently/better/etc., to make everything run smoother?

Even when you’ve done all of these things, there are still annoyances and challenges and SOOOOOOOOOOO many things that are simply out of our control as a patient. For those specific challenges, even when we’ve done everything right, we might still face issues and roadblocks. Stay tuned for Part II, which is what I do when there is a challenge!

For now, I would love to hear from you — what would you add/subtract from my list? What resonates? What feels impossible?!