Gatekeeping

January is always a month of changes in the context of health care. A new year and a new month comes with a reset of deductibles and out of pocket maximums and often copays as well. With the implementation of some healthcare provisions of the Inflation Reduction Act, people who have Medicare Part D are also experiencing significant changes. And here’s one more change — my local hospital system has been centralizing various services, including scheduling, so less and less can we actually get to anyone providing care outside of an appointment. Now, portals are also affected with different staff answering questions and routing patients.

In the midst of the start of the new year, I sent a message to my palliative doctor asking about getting an off label prescription to manage a really disruptive side effect of my Stage IV Metastatic Breast Cancer (MBC) treatment and was then shocked at the number of people who created substantial roadblocks to my request. Spoiler alert, my doctor was happy to prescribe the medication, she’s excited to see how well it works for me so she can suggest to others and we have a plan going forward but the experience taught me a variety of things that I needed to be reminded about.

First, each office handles portal messages differently. In this situation, a nurse read my portal message asking for the prescription, decided that a different doctor should handle that and routed my request away from my palliative doctor without ever talking to my provider. This nurse routed my message incorrectly (my urology oncologist’s office was pretty clear that GI issues were outside their purview) and much confusion ensued. Still haven’t met this person, she’s never been involved with my care or been in any appointments. She doesn’t know me or what conversations I’ve had with my providers unless something is in a note. I’m still baffled as to how someone would feel comfortable sending a patient who needs help away from the provider who is there to help with this very thing and didn’t check to see if the doctor they were sending me to was actually the right one for the right body part but I do understand that everyone has limited time and humans miss things.

Second, knowing how each office schedules appointments is really important. In this situation, when I realized that the nurse had decided to send my request to someone else and it was the wrong office, I attempted to address through another portal message to no avail and then called to schedule an appointment with my palliative provider. Found out that the scheduling was now centralized and the schedulers refused to schedule an appointment because there was no order in the system. And who would address that? The same nurse who decided to send me to the wrong doctor and didn’t tell my palliative doctor about my request. It felt very unlikely in that moment that that same nurse would ask my provider about scheduling when she had already acted to send my request elsewhere. Thankfully, a supervisor in the scheduling department was willing to review my doctor’s notes and I’ve addressed with my provider the need to have an order somewhere in the system so that I can see her as she and I have arranged, a seeming novel requirement.

Third, knowing what information is needed to convince all the ancillary health care workers is important. The third gatekeeper I encountered was a pharmacist who has told me before that he doesn’t accept trial information from patients and that patients don’t have the ability/training to determine if data is favorable. Previously, this male pharmacist told my medical oncologist not to prescribe topical heparin, which turned out to be extremely helpful for me once I interfaced with my integrative oncologist because the trial design wasn’t to his liking. You can read more here about that experience. He again did not want to listen to me and started talking about insurance issues and costs. I stopped him, asked if there were safety issues. He confirmed there were none. He then opined about the impossibility of the medication being approved by the FDA (ironically, it’s already approved, MBC is simply a new indication) and again I asked about safety. Again, confirmed there were no safety issues, no interactions, no contraindications. I did ask him if he was going to act to prevent me from getting the medication as he had done in the past and, to his credit, he did not this time. I’m not certain what would have happened if I hadn’t pressed and I’m always worried that another patient might not have the confidence to insist as he is one of those providers who communicates in an intimidating manner.

Fourth and finally, I spoke with the practice manager of the palliative office as well as the director over the pharmacists. The new rules and the rigidity in which certain rules are implemented were never communicated to patients and only now do I understand how to interface with the various offices at least on this type of issue. Bottom line, patients are typically the last to know about process and protocol changes. While it is unlikely we’d know unless an issue occurred, it can be helpful to consider asking what processes have changed as we all encounter our initial visits of 2025.

I finally saw my palliative doctor about a week after this all happened. I walked through what occurred and she was able to see the internal messages that went on behind the scenes and where things went awry. We have a plan and a system for alerting her when I need her to cut through all the gatekeepers and system roadblocks. My palliative doctor is a caregiver herself and has experienced many of the roadblocks and challenges that patients do, a perspective which has been really valuable as a provider. We have a plan going forward that we’re both ok with, something I endeavor to establish with all of my providers. And we talked about how consistently concerning it is that the very people who are supposed to take care of us often create the most roadblocks.

My takeaways …

If you are a patient reading this, know that gathering this information when it isn’t a crisis can be helpful. It can be helpful to ask providers about the best ways of contacting them or which staff are good contacts for different things. It can be helpful to identify those staff who create roadblocks and ask for those staff to no longer be assigned to your team, which is what I did with that pharmacist (this won’t be the last time I bring a study to my team and to have someone immediately hostile because a patient couldn’t possibly know anything isn’t a stressor I’m ok with).

It’s never comfortable to feel as though your needs, your symptoms, your quality of life aren’t important but don’t let a grumpy or overworked or stressed health care worker prevent you from getting what you need.

If you are a provider reading this, know that you may need to help your patients navigate the system. Providers are often insulated behind levels of bureaucracy and aren’t aware of all the hoops patients have to jump through — you can help with this and asking what barriers patients encounter can help open this conversation.

If you are a healthcare worker who has a position that gives you the power to gatekeep, to route patients, don’t do what the people did in this situation. Don’t send patients away when they need help, don’t limit a patient’s access to their doctor, don’t make assumptions, don’t talk down to patients or act like you know anything about their quality of life. And don’t stray outside of your responsibilities — if you have extra knowledge outside of your expertise, ask if a patient wants that info before launching into a different topic.

Stress is bad for everyone, but it is especially bad for people who are already dealing with a terminal cancer diagnosis and our expertise in our lived experience, in our quality of life should be respected and supported, especially when there is no good reason not to.