Revolutions don’t start with silence.
There’s an old saw that says, if you have a problem with someone, and you don’t tell them about it, it’s your problem, not theirs. When we are going through treatment for cancer, it’s inevitable that we will encounter lots of indignities, thoughtlessness, and downright ineptitude along the way. By the very nature of oncology, we are bound to see some of the flaws in the healthcare system that other people might never encounter. Some treatment centers do try to seek out patient feedback. Many more don’t. But whether they do or not, if we don’t provide feedback to our treatment providers, how will they ever learn how to make things better for us and for future patients?
It’s not just our right to complain, to be heard, to have our own experience validated and acknowledged. It’s our responsibility to speak up, to believe in the wisdom of the notion that the personal is universal, to realize that blowing the whistle can be an act of empowerment and profound healing. Change doesn’t happen in a vacuum.
Sometimes though, when we are in the midst of treatment and feeling more vulnerable than we’ve ever felt before, we don’t have the energy or the perspective to speak up. We have enough on our plates — indeed, we usually have too much on them — and we just need to get through it. But later, when we are on the other side of the arc of acute treatment, when we have the time and energy to reflect on our experiences, that can be a good time to begin to articulate to ourselves our perceptions and identify the problems we encountered, the things that could have and should have gone better. It doesn’t really matter how much time has passed. Whenever we figure out that we have something that needs to be said and we are ready to say it, that is the right time to speak up.
Among the many problems I encountered during treatment, one that forever stuck in my craw was my experience with a breast health center during my first year post-diagnosis. I was referred to this center by my breast surgeon, who was the first card-carrying cancer doctor I consulted at the beginning of my own sleigh ride.
“Fasten your seatbelts. It’s going to be a bumpy ride.”
~ Bette Davis, from All About Eve
Here’s my story. My cancer was first spotted on an annual screening mammogram, done at my local community hospital. It showed up as widely scattered calcifications, sort of like “a thousand points of light,” except more ominous. The radiologist promptly schedule a diagnostic mammogram for a few days later, read it while I was still dressed in my hospital janey, and recommended that I get a biopsy asap. Meanwhile, my primary care doc, who ordered my screening mammogram, happened to be on vacation at the time. But since I’m a healthcare ‘insider,’ I asked my clinician friends for suggestions, heard the same name mentioned a few times, and referred myself to that breast surgeon for a consult. Her blessed office staff squeezed me in for an appointment in record time. She was lovely and kind and gave me her cell phone number right off the bat. She performed an ultrasound in her office, which was inconclusive, and ordered a stereotactic biopsy at the hospital where she performed surgery. The biopsy was positive. She then sent me for a breast MRI, which was shortly followed by a sobering and life-altering follow-up visit with her, to have the Big Discussion about what I was going to do about having breast cancer.
My memory of the exact order of subsequent events gets a little fuzzy here, because, naturally, by then I was in a state of barely-controlled panic. In any case, somewhere in there, the breast surgeon took my results to the weekly tumor board, a gathering of surgeons, oncologists, radiologists and pathologists, drawn from the major hospitals in the city, to review everything and recommend a course of treatment. It turned out I could consult with her, as well as assemble the various other members of my oncology team, at this aforementioned breast health center, instead of running around to three or four different hospitals and offices. It seemed like a good idea at the time, to go to a multi-disciplinary center that brought together oncologists, surgeons, and other clinicians from the area big-city hospitals, along with diagnostics, lab tests, treatment and follow-up for breast cancer patients, offering comprehensive care in one place. So, in due course, I scheduled consults with a radiation oncologist and a medical oncologist at the breast health center, got some lab tests there, and tried to figure out what I was going to do about this calamity and when I was going to do it.
Comprehensive or incomprehensible?
From the very beginning of my acquaintance with the breast health center, there were problems. In the first place, no one was very friendly. Not that I was looking for friends, but a smile and some common courtesy would have been nice. I found neither there, sad to say. Instead, I felt like I was visiting a white-collar factory. The waiting area was large, crowded and chaotic. I had to check in with one person, fill out forms with another, and settle my copays and visit receipts with yet another. On average, about an hour or so after my scheduled appointment time, a medical assistant in scrubs would come and fetch me from the waiting area, bring me into a treatment room and hand me a hospital gown. I would change into it and wait some more. Then a nurse or nurse-equivalent would eventually come in, take my vital signs, weigh me, ask me a couple of pointless questions, not answer any pertinent questions, and have me wait some more. Finally, the doctor I was scheduled to see would show up, long after the time I’d arrived.
The radiation oncologist I met there headed up the department of radiation oncology at another hospital. The one salient piece of information I got from that first visit was that, in order to have a cogent discussion about whether or not I was going to have radiation treatment, I would have to meet with him at his hospital, in the radiation oncology department of that hospital’s ‘comprehensive cancer treatment center,’ which was a different hospital from the one where my surgeon performed surgery. Swell. So, I did, and that’s another whole story. But I began to wonder what point there was in meeting him at the breast health center in the first place.
Sometime later, I also met a medical oncologist at the center. She was affiliated with yet another hospital, which naturally was different from the one where I would have surgery, which was also different from the hospital where I eventually had radiation treatment. The medical oncologist ordered some more lab tests, which at least I would be able to get there at the center. At the end of our first visit, she gave me a lab slip, sent me out to the front desk, where I had to talk to yet another unsmiling, unfriendly office clerk, who scheduled a follow-up visit with the med onc and sent me to the unsmiling copay clerk, who gave me a receipt and pointed me down the hall.
A little friendly neglect.
The lab draw office at the breast health center was a tiny room across from the main waiting area. As I recall, there was one of those ticket-dispensing machines just outside, like they have at deli counters. I took a ticket, peaked into the room and cheerily waved my lab slip at the lab techs. There were three of them squeezed into the room, none of them drawing blood from anyone at the time. They appeared to be on a coffee break and engaged in an avid discussion of the lastest issue of Vogue. “Just wait in the waiting area,” one of them said, “and we’ll come out and find you.” At least she was smiling. It was hard to tell if there were any other women waiting for lab tests in the waiting area, but I found myself another chair where I could see the lab office door, and I duly waited. No one else entered or exited while I was waiting. About a half hour later, one of the smiling lab techs came out to bring me into the tiny room. One of her colleagues was perched in front of computer, not computing anything. I donated a few vials of blood, and was sent back to the front desk to check in with yet another unsmiling clerk, who couldn’t tell me when I would get my results or who would discuss them with me. Hours after I had arrived there that day, I went home.
Another problem with the breast health center was that nobody seemed to be coordinating their ‘comprehensive’ services. This was in 2008 and early 2009, and the notion of nurse navigators was still a fairly new one then, and at least in this particular city, actual nurse navigators were as rare as hens’ teeth.
There were nurses at the breast health center, but whenever I called to talk to one, I had to wait a long time to get a return call, which was almost never on the same day that I called in the first place. And when I asked my questions, I was always told that I would have to talk to one of my doctors about whatever I was asking. So, I would ask how to get in touch with my doctor, and would be told that I could leave a message, and they would get the message to the doctor, and the doctor would call me back. Except the doctors never seemed to get my messages, and consequently never called me back. When I tried instead to get a direct phone number for a doctor that I could call myself, I was stonewalled, because of course none of the doctors who consulted there kept regular hours there, so they couldn’t actually give me another phone number, because I had seen them at the center, so I had to wait for them to show up there in order to talk to them. But when I called during the hours when a doctor was actually at the center, the doctor was of course seeing other patients, so I had to leave yet another message, for which I never received a return phone call. “But isn’t there someone there who can just help me deal with my side effects?” I would ask plaintively. Well, no, you have to talk to a doctor about that, I would be told, or perhaps you should go see your primary care doctor if you’re not feeling well. So much for comprehensive cancer care.
The last straw.
The last time I visited the breast health center was for another follow-up visit with my med onc. It had been seven months since my diagnosis, six months since my partial mastectomy, five months since I finished radiation and started tamoxifen. My breast was misshapen, sore and still swollen. I had shoulder pain and cording from my elbow to my waistline. I was slammed with fatigue, my joints ached, and my brain was foggy. My appointment was at 8:30 a.m., the first one on my oncologist’s schedule for the day. I had made that first-of-the-day appointment because I had patients of my own to see later on.
The atmosphere at the breast health center was still relentlessly uninviting. Morale among the staff seemed to be at an all-time low. I checked in, found a chair, and waited. After waiting for a half hour, I went to the desk and asked if my doctor had arrived yet. “She’ll be along shortly,” I was told dismissively. Twenty minutes later, I asked again where my doctor was and if she had been delayed for some reason. The clerk sighed and scowled and said she didn’t know. “Well, could you please ask someone?” I said. She got up and flounced into a back room. A few minutes later, a woman in a suit came out and said my doctor would arrive shortly and would I please take a seat and wait. I said I’d been waiting since 8:30, and it was now close to 9:30. I asked if there was some reason why my doctor was running late. “Well,” said Ms. Suit, “you’ll have to ask her that, won’t you?”
About ten minutes later, my oncologist rushed in and brought me to a treatment room. “I’m so sorry I was late,” she told me. “I ran into a traffic jam around some highway construction. I hope they explained that to you.”
“Well, no, they didn’t tell me anything.”
“What? I called them from my car and told them to let my patients know I was running late. Didn’t they tell you that?”
“No, they didn’t.” I then described my experience with the front desk. My med onc was not pleased. I was not pleased. “Well, I’m going to have to do something about this,” she said. We finished our visit with less than optimal rapport. I didn’t get any advice about my fatigue, my aches and pains, my cording or my brain fog. I went out to the desk, booked another appointment for three months hence, and proceeded to the copay/receipt clerk. My med onc meanwhile appeared behind the front desk, whereupon she proceeded to communicate her and my displeasure to the check-in clerk and Ms. Suit. They were not happy. They did not appear to offer her an apology. They certainly did not offer me an apology. I went out to my car, called my own patients to reschedule them for later, and left. And decided there and then that I was never going back to the breast health center. The next time I saw my surgeon, at her own private-practice office, I relayed my complaints. I suggested that she might refrain from referring anyone to the center until they cleaned up their act considerably. She apologized and said she would follow up on it. I never knew if she did, but I never heard from anyone at the center. I found myself a different med onc, whose office was at the same center where I’d received radiation, and called for an appointment. She had the most spectacularly helpful intake nurse, who returned my calls promptly and answered all my questions. I felt better already. At the time, I had a recurrence scare, so I shoved all thoughts of the breast health center out of my mind, and got on with the job of clinging to my sanity.
Just last week, I finally got around to filing a claim with my supplemental insurance company for all the tamoxifen I took for my first year after acute treatment. Try as I might, I realized there was no way around the fact that my insurance company was going to have to verify my claim with the breast health center, because that’s where my first med onc prescribed the tamoxifen. So, I called the center to find out who they should contact for that purpose. The first number I called bounced me around on the switchboard and disconnected. The second number I called got me a clerk at the center. I explained what I needed and was put on hold. I spoke to another clerk and was put on hold again. The second clerk came back on and said she would have to have someone call me back and put me on hold while she figured out who that should be. Finally, she came back and said she would have a nurse call me back. I really didn’t see the need to talk to a nurse, so I tried yet another phone number. I got a different clerk this time, again asked for a contact to give my insurance company, and got a name and number for the center’s billing department. I filled out my claim and marveled that the breast health center appeared to be as inept and disorganized as ever. In the process of all these phone calls, I discovered that they had a Facebook page. So, I decided to leave some feedback and a plea for improvement on their Facebook page, groaned and sighed some more, and figured I might write a blog post about how miserable it is to suffer fools when you’re a cancer patient.
Lo and behold, yesterday I got a call on my cell phone from an administrator named Leslie at the breast health center, in response to my Facebook comment. Leslie was charming, solicitous, and apologetic. She had looked up my file and asked me to tell her my ugly story. I was surprised, but happy to take the opportunity. I was cordial and unemotional and straight-forward. I told her I worked in healthcare myself, so I knew what it was like to be on both sides of the treatment relationship. We had a good, long, constructive conversation. Leslie told me that she was horrified to hear what I had put up with. She said there had indeed been a lot of problems at the center during the time I went there, and that they had worked hard to address them all since. They had finally hired nurse navigators. They had retrained and hired new staff. They had developed a protocol for follow-up care. They hired doctors that now put in full-time hours there. They asked for regular feedback from their patients. Things were much better there now. She thanked me for my time. She welcomed any other suggestions I might have.
Well, you never know, do you? Even though it’s been two years since I saw the last of the breast health center, it still felt good to tell my story. It was the right time for me to tell it. And I’m going to think about it some more, and take Leslie up on her offer to provide more suggestions. Silence may sometimes be golden, but speaking up is what can make a difference.
A few related blog posts and links:
The Price of Silence, by blogger and author Beth Gainer
Not Ideal, by blogger and author Sarah Horton
Patient Advocacy: When Disruption Creates Win Win Win, by Trisha Torrey, Disruptive Women in Health Care
Health Care Self-Advocacy: Be the Squeaky Wheel, by Care2 Make A Difference
The Patient Empowerment Network, by Esther Schorr
The Patient Power Blog, by Andrew Schorr
The Prepared Patient Forum, founded by Jessie Gruman, PhD
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