When Convenience and Patient Care Collide

Advocacy 6 Minutes

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?

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

46 thoughts on “When Convenience and Patient Care Collide”

  3. You’d think it wouldn’t be that hard for them to allow same-day bloodwork for infusions that are [x] minutes or less, or for tests where results are normally available in [y] minutes or less.

    Liked by 1 person

    Reply

  4. This is clearly what happens when we value money over humans. I dealt with a similar situation with a dental emergency with my spouse (very extreme pain). The dentist basically put a bandaid on it and I advocated continuously and he wouldn’t budge/reflect/sympathize. Ended up having to go to the ER later after the bandaid medicine wore off (which I stated I knew it would, etc.). Luckily we got him into another branch and they took care of the issue. I could’ve kicked the dentist, it was just so inhumane.

    Liked by 1 person

    Reply

    1. I’m soooooooooo sorry you had that experience. Too many medical practitioners aren’t thinking ahead and sadly some of the hesitation to do what is necessary is because of the fear of getting sued. My profession is important but sometimes serves as too much of a check and balance.

      Liked by 1 person

      Reply

      1. Oh, thank you and ditto. I think it had to do with the opioid epidemic and limitations on pain medications–which I understood, but the dentist never came out and said that, explained, or sympathized. Just danced around the issue continuously and got frustrated with me, and I with him. Just a little compassion and guidance was all we really wanted–a recognition of pain, just like with your blog.

        Liked by 1 person

  6. My cancer center dies blood work first, sends patients who are only getting infusions upstairs for those shots. That’s okay with me now, but at first I didn’t know that someone read the blood results, decided whether I would get my faslodex, then got the doc to sign off on it. I would sit there for over 30 minutes wondering why it was taking so long. Finally , a nurse explained it to me. Come on! Communication anyone?

    Liked by 1 person

    Reply

  7. This is infuriating, Abigail, and sadly all too common. So sorry you had/have? to go through it. Brava to you for self/patient advocacy, exhaustion and all.

    Anyone(s) who might demonstrate in front of the infusion center wearing a placard that reads “Profits Over Patient Care? Ask Me!” ?

    Liked by 1 person

    Reply

  8. I wonder if the New York Times would be interested in reading this post. This warrants some investigation into whether other centres are also doing this. Totally outrageous. I am so sorry to hear you are experiencing this but power to you for trying to get the administration to reflect on itself. Would it be worth also sharing this experience with your local political representatives? This is straight up profiting out of suffering, or indeed out of the dying.

    Liked by 1 person

    Reply

  9. Even under these situations, when it is difficult to push the envelope for change, raise awareness for patients, you have forged ahead Abigail. Kudos to you! Keep it up.

    Liked by 1 person

    Reply

  10. I’m so sorry for yet another hard, uphill battle for compassion as well as common sense! Praying for clarity and strength as you continue doing the next right thing for yourself and others in the same situation. 🙏❤️

    Liked by 1 person

    Reply

  12. I’m so sorry you’re going through this Abigail. I find this is happening across the board. Bloodwork is to be done in our case a few days ahead of time. I think the bone medication is a factor too. Fortunately for us there is no co-pay for bloodwork. A lack of empathy is my greatest concern here.

    Liked by 1 person

    Reply

  13. Wow, Abigail, you already have enough to deal with your cancer treatments. You would think a cancer centre would put the needs of the patient first. I feel sick knowing that the centre cares more about profits and procedures than the quality of human life. Advocating for your health can be very exhausting and frustrating. Please take care of yourself. I admire and look up to you as an advocate.

    Liked by 1 person

    Reply

  14. Wow! I understand and will be praying for you. At Florida Cancer Specialists, every three months I have to schedule separate appointments for bloodwork a week before I see the doctor. I have been going there since 2008, and since the middle of 2020, I was told to start paying co-payment for lab work visits and told them I would not, and did not. I called my insurance company from their office and they were told absolutely not for labs only. They tried to charge copay for today’s lab and I said no. I believe they are trying to recoup lost money since the pandemic. Please check with your insurance company to see if a copayment is charged for labs only. I tell a lot of people I know that you must be your own patient advocate. Take care of yourself and be safe.

    Liked by 1 person

    Reply

  15. Wow! I understand and will be praying for you. At Florida Cancer Specialists, every three months I have to schedule separate appointments for bloodwork a week before I see the doctor. I have been going there since 2008, and since the middle of 2020, I was told to start paying co-payment for lab work visits, I said no. I called my insurance company from their office and were told absolutely not for labs only. They tried to charge copay for today’s lab. I believe they are trying to recoup lost money due to the pandemic. Please check with your insurance company to see if a copayment is charged for labs only. I encourage people I know to be their own patient advocate. TI am sorry for your experience. Take care of yourself and be safe.

    Liked by 2 people

    Reply

  16. Lab then upstairs to treatment is all I’ve known for the last 20yrs. This gave me a new perspective on what I honestly thought was the norm. I’m inspired to ask why tomorrow.

    Liked by 1 person

    Reply

      1. I will. It pains my heart to read things like this as well as others. I have an amazing and compassionate team. But you have taught me there’s always room for improvement!

        Liked by 1 person

      2. I truly love my doctors and nurses. The clinical piece at my cancer center is top notch. It’s when the administration gets involved and starts optimizing for efficiency and profitability that things go sideways.

        Liked by 2 people

      3. So my team today told me that they do it due to staffing. We only have 3 (soon to be 2) on the oncology floor and only 2 in phlebotomy. I get that but they really appreciated the feedback!!

        Liked by 1 person

  17. Abigail, Its interesting to see you mention this. Having same problems of convenience driven MBC care on this end too, i’ve seen quite a few mention issues like this elsewhere as well. What is going on? My 30 min Zometa infusions have been actually sped up to 15min infusions. 30 mins im alotted in the chair and it takes 15 mins to get the okay to go so they ram the Zometa in to free up the chair quicker. Like rushing to flip tables in a restaurant, except this is cancer we’re talking about. Vapid, emotionless stares if you question, even in tears. It’s like where are peoples hearts these days? I know whats happened to my heart, its crushed having to put up with this disease and all that comes with it and just knowing how awful i’m going to feel the next day because their in a rush. I’m so sorry your experiencing similar issues, its anger inducing.

    Liked by 1 person

    Reply

    1. You are so much more patient than I am. I get so furious and make them change it in the moment. If I’m adversely affected the next day or might be, then it’s a hard no. At this point, I don’t really much care for their convenience. 🤷🏻‍♀️

      Like

      Reply

  18. You address a pivotal question, Abigail. The convenience and profitability of a cancer center’s actions reflects the kinds of decisions too often made in corporate America. I have to add that common sense frequently flies out the window as well!

    Liked by 1 person

    Reply

    1. Ah, you are so right!! I get tunnel vision sometimes about the value added of including patients that I often forget that basic common sense is also not as prevalent. Thank you for reading and commenting! ❤️

      Like

      Reply

  19. OMG that is totally crazy! That is wrong on so many levels! Even just the energy/spoons involved in adding another appointment to an already complicated life is infuriating. And for those having to deal with cancer AND trying to work because their job is what provides the ability to pay for the treatment….SOOOO wrong. Sorry you got that added to your load.

    Liked by 1 person

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

Gravatar
WordPress.com Logo

You are commenting using your WordPress.com account. ( Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. ( Log Out /  Change )

Cancel

Connecting to %s