In Fairness to Healthcare Professionals

“All I know is that my life is better when I assume that people are doing their best. It keeps me out of judgment and lets me focus on what is, and not what should or could be.”

- Brené Brown

I have been thinking a lot about this lately, especially as I have begun sharing my story about my Stage IV/metastatic breast cancer (MBC) diagnosis in July 2020—and since. First of all, I was diagnosed during COVID shutdowns. Well, I started diagnostics in May 2020. A month later than I should have—since my previous landlord told me that if I left the house for a medical appointment, I couldn’t come back.

Reportedly, they were worried about me passing COVID to them through the vents or something. (*I am being pretty snarky in this last sentence, but it is true.) A month later, I defiantly moved ahead with getting my diagnostics lined up. And I quietly ended my “friendly” relationship with these upstairs folks. No more personal info shared.

What healthcare was before COVID-19

I have NO reference point in terms of what was the healthcare norm before COVID. It stands to good reason, though, that I entered into diagnostics and actual treatment when our healthcare system and the people who work within it were stretched to the limit.

So I have a few things to say about this, including my very deliberate attempts to be fair about what I say about the medical professionals who have served us and me during this time.

Breaching the topic of healthcare

I will broach this topic by starting with three things I believe to be true:

1. Healthcare professionals are only human,
2. Few healthcare workers enter into the medical profession with the intention to offer substandard care or coordinate infusion chairs for a living, and
3. Healthcare professionals are working within a broken system that doesn’t allow them to be everything we need from them.

Quality of healthcare for MBC

I don’t know about you, but in MOST of my medical appointments, I feel that a healthcare provider has one eye on the clock while feverishly typing what the patient is saying. For this, the listening part is often lacking. I find I talk faster because of this, and it very well may be that I am harder to follow because of it.

Not surprisingly, too, my blood pressure skyrockets during medical appointments. The only time this happens. Oh, except I am sure it kicks up a bit when I read my aftercare summaries that are filled with false and inaccurate information.

Wish I could say this was uncommon, but it is MORE common to read errors than for someone to get it completely right. Still, I have been working over the last few months to place blame where it is warranted. It is the system they are forced to work within, not the providers themselves.

Fellow helpers

As a social worker, I have great respect and admiration for and a sense of connection to fellow helpers. I also get it that maybe I sometimes get someone on an “off day.” We all have them.

At the same time, I have seen it so far within two separate health systems—and in talking with fellow patient advocates, I am under the impression that similar problems exist no matter where we get our treatment.

Maybe some healthcare providers have better mechanisms for internal communications than others, but there is so much that COULD alleviate a patient’s need to make or field multiple phone calls or emails for the same simple issue and where we might not need to start over with each provider in explaining our health history.

I also take issue with the fact that I am forced to talk about my lack of resources with almost every new person I encounter. It does not make me happy, and it, frankly, re-traumatizes me to have to “go there” again, and again, and again.

My message to healthcare professionals

But as I said, I KNOW that most, if not all, the people I have encountered during my treatment are dedicated, healthcare professionals. There are a few that I think are or were burnt out or just in the wrong job. Yet, those folks have been the rarity. And, even for the providers who got it wrong with me, diagnosis-wise and beyond, I do think they are giving us their best—under the circumstances.

For all you healthcare providers out there, I do see you. I am sorry when I am impatient or even angry. But, a lot happened BEFORE you that led us to this point. However, I do know that most of the people I met since 2020 have good hearts, really do care about MBC patients (and patients in general), and want to make a difference in our lives.

Because of this, I am really working at keeping my emotions in check when my medical record suggests they didn’t hear a word I said. Yes, it is tiring to come back, again and again, to point out errors. Sometimes I don’t even want to deal with it. But then I remember that this is really important.

Messed up system or not, our lives are in your hands. And accuracy matters. For example, please don’t cut and paste your summary from our last visit and say that the patient reports they are feeling well if I was never asked. This much IS within your control.

Part of a broken system

I know there are other patient advocates who have taken the administration to the task at their cancer center for exactly the kinds of issues I am mentioning. And so, I am turning my focus to where the real problem is; the healthcare system.

And I will continue to remind myself not to take it out on individual healthcare providers who really are doing their best, despite needing to function, day in and day out, under stressful and difficult circumstances.

Thank you for your service and commitment to the MBC community.