Recently, I was informed of a new process at my cancer center. This information was provided by a scheduling person who was clearly extremely taken aback when I questioned what she wanted me to do and then refused to do what she had been told to schedule. I figured out a workaround for the unacceptable thing she wanted me to do and then proceeded to address it with the executives. When I figured out what had happened and was told that no adjustment would be made, I was aghast.
Convenience had been placed above Patient Care.
Let me set the scene …
I get an infusion called Zometa. It’s a bisphosphonate, designed to help keep my bones strong where the cancer has literally left holes and structural instability, and is given to me intravenously (IV) through my port. For years, I got this infusion monthly, now I usually get it quarterly due to the fact that it has caused my jaw bone to die (for more information about this, you can read here). This infusion takes about thirty (30) minutes to drip into my body and prior to the pharmacist releasing the medication to be given to me, there has to be confirmation that my kidney function is ok since Zometa can often negatively affect the kidneys — this confirmation is obtained via blood work, usually called a Comprehensive Metabolic Panel (CMP).
For years, I’d enter the infusion center, get comfortable in the reclining chair, put on my comfy socks, snuggle in a blanket (I do love the warm blankets we get!), then the nurse would access my port (e.g., stab a needle deep into the circular plastic doohickey implanted under my skin) and take several vials of blood. That blood was then picked up by a tech and taken to the lab. I’d wait about 10-15 minutes, the results of the bloodwork would show up in the Electronic Medical Record (EMR) that the nurse has open for me, and the infusion would start. Years, I did this and it happened the same way every month for years.
In December of 2020, I was told by a young lady who called me that I had to schedule a separate appointment for bloodwork a week before my infusion. This would mean double the appointments and double the stabs (yes, this is what I call the situation where the sharp implement pierces my skin for whatever reason) and over my lifetime, truncated as it is, double all of that adds up.
That was a hard no from me, especially when she told me that it was because they didn’t want the phlebotomist walking around the infusion center collecting the vials, that this was a COVID risk for the employee. I didn’t tell her what I thought of THAT justification for a whole separate appointment and inconvenience and extra stabs for me.
I figured out that I could go to another part of the infusion center called “rapid treatment,” where a nurse would access/stab my port, take the blood and send the blood to the lab. Then, I’d walk over to the other part of the infusion center (just a wall separates them) and by that time, the bloodwork would be back and I could get my infusion. Yes, you read that right, a wall separates the rapid treatment area and the infusion area with the comfy chairs.
This literally means that I’m walking around in a public area (the lobby) with a needle inserted into the port that has a tube that goes directly into my heart. Yes, it’s covered, yes I’m protected to a certain extent from germs. This process means that I still only get stabbed once and there’s one appointment, but instead of waiting in a comfortable chair, able to read a book or watch Netflix, I have to go from one place to the other, walking around people who may or may not have COVID, who may or may not have any other kind of infections or diseases, exposed to more than one person putting their hands on my body, which raises my anxiety levels during a time where I’m already anxious and anticipating all that discomfort after the infusion.
I sent emails and raised a little hell about this whole process and was told that there had been a survey (I didn’t get it) and input provided by patients and clinicians and that the decision for the entire infusion center was that it would be better for patients to have to attend multiple appointments because that meant less sitting time in the chair as patients were complaining about how much time they were sitting and waiting — while no one could answer for sure, I highly doubt anyone was given the choice between waiting longer versus having an extra appointment.
Mind you, the nurse in the infusion center told me how they (the nurses) were evaluated based on how quickly they could move patients in and out of the chairs and so was the administrative people for the infusion center as a whole. Getting people in and out faster meant bonuses and other incentives. The registration people told me that the population coming into the cancer center had plummeted because of COVID and they needed to increase the “impressions” or number of visits to the cancer center. The finance people didn’t have to tell me that co-pays are collected from multiple appointments this way.
I was told that the fact that multiple co-pays are charged for multiple appointments didn’t factor into the decision. I was told that the explanations I was given by the original scheduler, and the nurses that gave me the infusion and the front desk people, all of whom I quizzed carefully about this change, had all lied to me about the various explanations they’d given me. I was told that no exceptions to this policy would be allowed because it would be a “slippery slope.” I was told it was better not to wait in the chair, that this was the conclusion of all these people, none of whom appear to be patients. I was told that people receiving “bad news” (meaning their organs weren’t functioning properly) messed up the flow of people in the infusion center and created bottlenecks.
I have been a patient far longer than I want to be and I talk to a lot of patients. After these discussions, I polled some people, asking whether they’d want to wait a little longer in the chair for bloodwork or have an extra appointment. Honestly, most were a little miffed that I’d even ask and no one opted for an extra appointment.
This is the last paragraph that I sent to the executives who made the decision to put profits and convenience over what’s best for patients:
“Every single trip to <cancer center>, someone hurts me physically. For many trips, my skin is pierced multiple times (check out the Faslodex needles and the thick syrup that is injected into both of my gluteus Maximus muscles every month one of these days—I’m happy for any one of you to come to my appointment and watch this process that I endure every month and which has caused my jaw bone to die, causing immeasurable daily pain). To be forced to travel to <cancer center> to be physically hurt yet another time just for a convenience issue is simply untenable for me and only further increases the damage done to me and my quality of life by the medical system. I’m already dealing with a truncated life expectancy and knowing that I will leave my children motherless in the near future. To make my life a little easier and reduce the number of times that I am physically harmed by someone at <cancer center> does not seem to be too much to ask.”
What’s the remedy here? Is it to make an exception for those of us living with Metastatic cancer, as I asked? Is it to make an exception for those of us who get shorter infusions, like the 30 minute one that I get? Or is a one size fits all policy best so that no one falls through the cracks?
I’m all for checks and balances and I get evaluating risks/benefits. I had the infusions that lasted hours after getting bloodwork that took an hour to come back during IV chemo and I think I’m actually in a pretty unique position to be able to evaluate all of these issues. And yet, my concerns are ignored — the affect of each person employed at the cancer center that I attend that I spoke with was so flat and no empathy was extended to me despite the fact that I broke down crying in at least one meeting attempting to give these administrative people a window into my life and what I carry every single day. The fact that they were adding to my burden, adding to the weight that I carry and inflicting further trauma was seemingly a non-issue in their minds.
What is a patient to do when the convenience of clinicians and the profit of a cancer center are more important than caring for patients?