Better Late Than Never

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.

Claims adjustment.

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

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Tuesday, December 13, 2011 at 09:12 pm, filed under Attitude, Health & Healthcare, Making A Difference and tagged , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

20 Responses to “Better Late Than Never”

  1. Wow, this topic so resonates with me. It wasn’t until I had cancer that I realized what kind of insensitive nonsense you have to put up with in the medical community. (I’d never really gone to doctors before). It began with the radiologist at the breast mammography center who called me on the Friday before Labor Day weekend with my biopsy results refusing to answer any of my questions or discuss the pathology report, and snapping at me, “Just get a surgeon!” before hanging up and leaving me with a three day weekend to explore the Internet and assume I had the worst possible cancer and was going to be dead within a year, to the head of the holistic center where I was going to get supplemental treatment during radiation telling me that I had “caused my cancer” by taking birth control pills. When I told him I’d never been on birth control, he seemed flummoxed. It goes on and on. I will take the words of your post to heart and continue to try and communicate when I can!

  2. Oh, gawd, Sandra…it’s outrageous, really, how many stories there are like this. Your experience sounds absolutely unforgivable. I can tell you that every hospital or treatment center is supposed to have some kind of patient ombudsman or someone who is charged with hearing your feedback. Even if you have to insist on talking or writing to the director or hospital CEO, it’s worth it. This recent experience has definitely given me the gumption to write a few more letters.

    Unbelievable. Good luck! And let me know how you make out.

  3. Thanks Kathi for the reminder that when ‘we’ complain or criticise our health services it’s not about us – it’s about the women who will walk the same path after us and about making it better for them.
    And thanks for the link too.
    Best, Sarah

  4. Wow. I’m speechless. But you remind me that I need to write to the local breast center’s ombudsman about the onc who didn’t tell me about Oncotype DX and was simply sending me off to chemo that it turned out I would not benefit from. Then there’s onc No. 2 who doesn’t understand the Oncotype DX assay. Sigh. I do need to write. Another sigh.

  5. Kathi – thank you for telling your story. Clearly all of us caring for women with breast cancer and breast scares have a lot to learn from this. I do truly believe that most of us genuinely try to do our best for every patient, but some individuals and some systems definitely need more work. In addition, I think it’s important to point out that just because everyone is under one roof, it does not mean that they are truly working as a team. Sometimes a team approach can mean that the doctors and nurses involved in your care all have a good working relationship and communication plan, not that they share an office.

    I encourage you to keep speaking up! That’s the only way that things will change. Best wishes for continued recovery!

  6. Thank you, Sarah, and especially thank you for telling your own story. Your example has really helped me and lots of other women, too, I’m sure. xoxo

    Chandra, one of the most frustrating things about cancer treatment is that all oncologists are not created equal and all of them are not necessarily up on the all the latest treatment protocols and assessment tools. Sigh. And yet what are we to do? We can do lots of our own research, but ultimately, we are placing our trust in these people to do their best for us.

    Deanna, thanks so much for your comments. The problem from the very beginning of my own adventure was a lack of coordination. I had no point person to call. My surgeon was the closest person to one, but even she did not discuss the full extent of my options at the start, or the implications of any of them, and instead recommended only one path, in that ‘my-way-or-the-highway’ mode that many doctors tend to adopt. She was also not helpful with follow-up issues. It was with deep disappointment that I lowered my expectations for her as well. I need to write a particular letter to her.

    If it weren’t for the incredible medical assistant at my surgeon’s practice office, and that fabulous intake nurse who worked with my second med onc, I would have surely lost my mind. The medical assistant and the intake nurse were the only people who consistently stepped up to the plate, and I bless them for that. I’ve also told them and their bosses how much I appreciated them.

    I take heart from knowing I cannot have been the only person to complain back then, because there have been some much-needed changes made at some of the hospital cancer centers I crossed paths with. There are now nurse navigators in many more places, and they make a huge difference.

    I also owe a huge debt of gratitude to my primary care doc, who checked his office before his vacation was over, found the fax about my diagnostic mamm results and called me on my cell phone before he’d returned to his office to apologize for being on vacation! He has been consistently wonderful since. He is and always has been a real team player, which is why he’s my pcp.

    A few of my friends are physicians who are cancer survivors, and we’ve talked about all this at length, which has been very helpful. Where I work, we always solicit feedback from our patients and change how we work according to the results. I appreciate that more than ever now!

  7. Excellent blog post Kathi. I feel like the idea of patient’s complaining about the service/care they receive really is still a new frontier. Maybe social media is the way in here. It’s opening up whole new channels of communication in public forums that simply cannot be ignored by the providers. Your case and Sarah’s are perfect examples of the role social media has to play in patient advocacy. Providers ignore this at their peril.

  8. Yes indeedy, Rach! We ‘Grumblers’ do our grumbling in public!! Heaven bless social media!

    Nancy, I know most people who treat us are doing their best, but their ‘best’ doesn’t mean it’s the best for us. And I have to believe that most welcome feedback that helps them do a better job. I know I do, even if it’s hard to hear at first.

  9. Oh my gosh, I got dizzy just trying to keep up with your story and all the “run-arounds” you seemed to have had. I guess I’ve been fairly fortunate, but I go to a fairly small facility and sometimes I think they are actually better for whatever reason, maybe simply because they have fewer patients. I don’t know. I do not believe size should be an excuse however. If anything, larger facilities should be even more diligent regarding everything. I live near Mayo Clinic and chose not to go there for this exact reason. And I do have experience with them via my mom and sister. Dr. Attai made excellent points in her comment. Anyway, sorry you had to go through so much. Thank goodness you aren’t keeping quiet. Noise often brings about change. So keep making “noise.”

  10. Kathi, this is a great post! As patients, we absolutely can be the arbiters of change. People going through a health crisis *really* experience a health center or hospital or medical office at its best — and at its worst.

    What you have done is exactly what we all should do (if we can); it helps to pay it forward for all the other patients who aren’t able to have a voice by letting egregious offices know how they can improve their services or the experience for men and women going through the worst times in their life.

    I was recently invited to a focus group at the breast center where I was diagnosed. I thought I would be in a room full of ladies and that I wouldn’t have much to share. I was wrong. There were only 4 patients invited (counting me!), and 3 nurses. They asked us detailed questions about how they can improve their services. And they served us dinner! I was astounded.

    If you can find the right people to air your grievances (or accolades, as the case may be), we all benefit!

    Keep on grumbling! I will do the same. 😉

  11. That’s awesome. Renn!!

  12. Thanks!! This reminds me that I need to contact the hospital where my mastectomy was performed and register both complaints and compliments about the nursing care I received. It’s been about fifteen months, but honestly (and I know you understand), it’s been only recently that I’ve had the energy to think about composing a letter or picking up the phone to advocate for myself. And this post reassures me that I have a right to do this, and in doing so can potentially improve the experiences of women now.

  13. Kathi, since we both live in the same state, and I started my care at the breast health center, I can’t help but wonder if it’s the same place. I called it the land of many couches, and would always say that all the couches didn’t make up for the lack of coordinated care. This was in 2008.
    Ultimately, I sent a long email to the chief of gyn stating that the care at the center was poorly coordinated at best and harmful at worst, and ended up with a 7 am meeting with him, my breast surgeon (who I blame for my lymphedema–started three weeks post op, and she had a firm hand in it, and told me that she bore no responsibility for helping me find care) and the head med onc. The risk management flags were flying. In the end, the head of gyn oncology thanked me for my wonderful insights, and nothing changed. I stopped seeing the breast surgeon and the rad onc and still see the med onc, but at another hospital.
    As a provider, when I sent a patient there, each referral note had a post card asking for my feedback.
    As a patient, I just sat on the couch and was ignored.
    Good for you Kathi, for speaking up.

  14. Judy, was it the W&I center on Blackstone Street in Providence?

  15. Kathi, that’s the place, I can’t bear to go in there.

  16. Kathi, one last irony–I now work in a rad onc facility, and I saw a patient who had the same breast surgeon and she said to me ” Dr. G is so glad I’m coming here because I have lymphedema, and she says you know so much about lymphedema.”

    How is it that I know so much about lymphedema?

  17. Wow, Judy!! And I suppose Dr. G made this referral without the least awareness of irony??? Good grief.

    I can’t bear the place either. I don’t know who ran it when we went there, but I’ve never seen such an ill-placed bunch of miserable, unprofessional office staff in any other medical center quite like the women who worked there.

    Praelior, go for it. Take your time to get your letter(s) the way you want them. Even if you get no response, you’ll feel better. But look what happened with me and with Renn and with Judy? You never know. xo

  18. Kathi,

    OMG is all I can think. Not only are you saddled with a crappy disease, but you have had to experience such poor service from medical staff. I’m sure those in the lab wouldn’t be discussing Vogue if they were going through the hell you were going through.

    Speaking up is a good thing, and it’s great you did so.

    Thank you for providing a link to my posting. I appreciate it.

  19. Kathi, I should be shocked by your story…but then again, nothing really surprises me anymore. Cynic is my middle name. And don’t get me going about lymphedema! So much irony. And so much misinformation. But at least we now have tales to tell, albeit more along the lines of Poe’s tales of woe. We’d be so boring without colourful stories, now wouldn’t we?

  20. Sigh. I know, Jan, huh? One hates to feel cynical, but it’s hard not to. But yes, our blogs would lack a certain something without tales of our ‘adventures.’ LOL.

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