Managing Healthcare Challenges, Part II

This post is a follow up to the first part, which were all the things I recommend doing when there isn’t a specific challenge with your health care team. You can access the first part here. I want to reiterate that many of the solutions I’ve found are available to me because I’m a cis-gendered white lawyer. Even with these “privileges,” I still struggle to be seen, to be heard, to be listened to, but I want to acknowledge that the struggle is even harder for others who look different. For those of you who aren’t like me, I do want to know what resonates differently with you — my dark skinned Jamaican husband often reminds me how our skin tone affects so many things.

When I finished drafting the original post about healthcare challenges, I realized that I’d gone beyond the length that I usually target for a blog post. Everyone’s attention spans are only so long and while I do try not to go into the weeds, I usually and up there. So, even when you’ve done all of the things I suggested in part I, there are still annoyances and challenges and SOOOOOOOOOOO many things that are simply out of our control as a patient.

For those individual challenges, here’s some ideas for managing them that have worked for me:

1. You really do catch more flies with honey. It’s often easy to take out our frustration on people who have no ability to help us (see notes below) and while that release can feel necessary at times, taking two steps back, breathing, etc., can help us calm down. I have found over and over that sharing context (i.e., I have terminal cancer, this medication is literally keeping me alive) can help and appealing on a personal level is usually the most productive.
2. Ask lots of questions. Yes, it takes time and yes, I often get information that I could care less about, but I try to begin by asking questions about how things work, how the computer system works, how the different departments interact with one another, who reports to whom, who supervises whom, etc. It’s not our responsibility as patients to understand the nuances of a healthcare system, but if we know how things work, we can better navigate challenges and offer better solutions. One question I do ask quite a lot is whether the person I’m speaking with would treat their mother/sister/grandmother/aunt/daughter the same way.
3. Write everything down. It’s not just that chemo brain affects all of us, the systems themselves are super super super complicated. Writing down what happens when can be super helpful in the moment as well as later. I make sure to write down the names and direct numbers or extensions for everyone I speak with as well as times/dates.
4. Be sure the person you are talking with has authority/power. In my experience, the first line are those people who don’t have the ability/power to make decisions other than adherence to the protocols. To reach true solutions, a supervisor or many levels above that supervisor is where requests/adjustments can be made.
5. Ask to hold. In my experience, messages are often not returned and I usually insist to remain on hold if possible while a solution is identified/implemented. Yes, this can mean that I’ll be on hold for longer periods of time, but this practice has saved me time in the long run because talking to the “right” person can be hard at times and getting back to that “right” person can often be impossible.
6. Ask about time periods. Whenever someone tells me that they will call me back or need to do something until I can get an answer, after I write that down, I ask how long their part will take. Understanding when I am to receive an answer allows me to set my expectations and also follow up if/when that time period isn’t respected.
7. Ask for everything in writing. When a challenge has occurred and something needs to be done to correct that issue, if the healthcare provider won’t put their proposed solution in writing, that’s usually a red flag. Legitimately, even if the call is recorded, if a solution to a challenge isn’t in writing, it often doesn’t happen.
8. Conference in as necessary. When I’m hearing something from a doctor’s office (usually prior authorizations or billing issues) that doesn’t jive with my insurance contract, I often conference in my insurance company or ask that they do. You, the patient, often have to provide authorization anyway, so you being on the line can help facilitate answers and hearing the insurance company representatives talking to the doctor’s office directly is often quite illuminating.
9. Always ask, what could you/I/we do differently next time. While I always hope that challenges happen once and then we move on, the realistic fact of the matter is that we are likely to encounter similar challenges going forward. So, I try to always ask about what could be done to avoid the situation or address it better going forward. Most of the time, having key contacts to call when something comes up again is the silver lining of encountering a challenge.
10. Offer Solutions. While I do understand that we don’t always have the time or energy, I try very very hard to identify as solution from my perspective as a patient to challenges. For instance, when I recently encountered delays in getting the results of an x-ray, I ended up meeting with some of the technical people behind the scenes to identify those patient codes that could be triaged differently. All because I kept saying, you should be able to triage those patients who need a result differently other than just “in-patient versus out-patient” or “stat versus not-stat.” This can be a heavy lift and is often more frustrating when you see administrative logjams, but I’ve found that people listen differently when you not only identify a problem and also offer to be part of the solution.

I’m sure I’ve forgotten something, so now it’s your turn — what resonates? What’s missing? What have you done?

By comparing notes, by working together, patients can help healthcare do better and we deserve that.