One thing I learned while practicing law is that it is just as important to celebrate wins as it is to identify issues. So, I want to take a moment to describe what I would consider a win.
A little backstory first …
I hate to wait, like really hate to wait. Part of the problem is that I often over-schedule myself or make plans based on everything working perfectly, when we know that rarely happens. Before I became a professional patient, I’d see the doctor only rarely and I was always annoyed when I had to because of inefficiencies, waiting, and the often too complicated processes that made no sense to me. Since I was only seeing a doctor rarely, I didn’t feel as much of a need to address things.
Yes, I’ve always been a “difficult patient,” and having babies only exacerbated the issues since I challenged the doctors every step of the way and often insisted on adjustments that weren’t “protocol” for them. Another way to describe my perspective is that I’ve always pushed to have my medical care fit around my life rather than my life have to adjust to medical care. While I’m habitually a rule follower, I’ve little to no respect for rules that are there for no rational reason and always insist on knowing why a rule is in place before I agree to follow it.
Then, in 2017, I was diagnosed with breast cancer and found myself at the mercy of a system that often sidelines the human needs of the patient in favor of addressing the patient’s medical needs in a way that the system demands. At first, I submitted and showed up whenever and wherever I was told. This was possible since I was closing my office and I wasn’t having to meet the needs of clients any longer. As we closed out the office and the remaining accounts were closed, I had less and less work to do. It opened up my schedule, but it also freed up my brain to be able to analyze and study what was happening.
And yes, I’ve continued to do this and will continue to do this as long as I’m able.
We moved from Orlando to Miami in October of 2017 and I’ve been treated at the Miami Cancer Institute (MCI) ever since. Candidly, the main reason I’m treated there is because of my medical oncologist, Dr. Grace Wang, who is also my mother’s medical oncologist. She’s amazing in many many ways and I’ve often written about the collaborations that I’ve been able to have with her. I’ve developed a closeness with some of the other doctors as well, which anchors me there.
MCI has been a cancer center for a little over three (3) years as of 2020 when I’m writing this post and it has had most of the growing pains issues that one might expect. And yet, despite that, I still expect excellent, patient centered care. I expect that from every office I enter as a patient, from the front desk people, to the doctors, to the administrators and everyone in between. Additionally, I expect people to tell the truth when they’ve done something, good or bad, and take responsibility for the inevitable mistakes.
After I’d been treated at MCI for a few months, I started noticing patterns of behavior and issues I’d encountered. I started a notebook with details and names and concerns almost immediately — mostly because I’d forget just about everything once it happens and because often multiple things are happening at any one time in multiple departments and there are so many different labels and positions. It’s a whole new vocabulary too as every cancer center calls things by different labels. I now have more than one notebook full of scribbles, plus some spreadsheets, a call log, and list of direct numbers.
Yes, yes, I’m OCD, but I’m also terrified that I’ll miss something. So much pressure falls on us patients to ensure continuity of care and to carry important information from doctor to doctor, even down to medication contraindications.
At the end of 2019, I’d reached a boiling point about several issues that just kept happening, despite all of my complaining and filing reports. So, I put together a five page spreadsheet and called the Chairman of the hospital system, Baptist, and scheduled a meeting. He met with me for an hour at a Starbucks and was very very receptive, not just because he’s a really compassionate person, but also because my spreadsheet included ideas for fixing the problems.
This is a key piece that I’ve learned — don’t just complain, explain why the issue was an issue and propose a solution. Even if the solution is just retraining the employees to have basic common courtesy for patients, suggest what can be done rather than just yelling.
After that meeting, the chairman of Baptist sent me to the COO of the cancer center. From there, she assembled a working group of the senior leadership and I’ve been meeting with them ever since. The meetings have shifted to Zoom now, but we are still meeting and still reviewing the progress on the various issues that I’ve been bringing up. There is also a pretty detailed email thread with my experiences and the experiences of others.
Here’s another key piece I’ve learned — I provide specific feedback after each and every major visit. That doesn’t mean that I make a big deal out of every little thing, just that I tell the working group about my encounters with employees, both good and bad. When I see someone who comes to my cancer center posting in a group or on Facebook about their experiences, I ask if I can share it. So many don’t feel comfortable sharing their experiences directly, but have been ok with me forwarding that info.
And that brings us to last Friday, the 4th of September, when I went to the cancer center for bloodwork and Faslodex/Fulvestrant shots, which I receive monthly. One of the key issues I’ve been complaining about is that the schedulers would often make appointments unilaterally without talking to me or understanding the clinical requirements of my treatment. The rule at MCI has always been that the schedulers are to meet with the patient and the nurse at the end of treatment to discuss the next steps and appointments, but in three years before last week, this had happened properly a total of three (3) times for me.
On Friday, everything happened properly. I was cared for with courtesy, I was asked about my pain and my experiences and the scheduler immediately came at the end of my appointment with a computer to review my file and my needs with me and my nurse in order to make the correct appointments that worked with my schedule. A supervisor was floating on the floor, ensuring that everything happened properly, and escorted me from the phlebotomist to the nurse and back to the waiting area. I was asked so many times if someone could do anything else for me, it felt like I was in a high end hotel!
And as soon as I got in the car, I sent a glowing email to the working group thanking them for the clear demonstration that they were listening to me and now better meeting the needs of all the patients.
And now all of the hours and discussions over the last few months have been worth it. Yes, it has seemed like banging my head against a wall at times and there have been lots of tears and anger; at the same time, the results truly are worth it for me and for all the other patients at MCI. If by my efforts, even just one other person has a better experience and doesn’t have to handle the additional angst of dealing with issues outside of cancer, then its worth it.
*********I’M TOTALLY AWARE THAT NOT EVERYONE CAN DO WHAT I DID!!*************
Don’t think that I’m suggesting that everyone has the time, energy, and passion fueling these efforts. I totally get that I’m particularly stubborn in stuff like this and when I see a lack of care for vulnerable people, it sends me into the stratosphere. I also work my family connections (that’s the chairman of the board) and regularly network with people in places of authority (several of the parents at my kiddos’ school are doctors and other clinical staff in various positions).
What I want every single person reading this post to consider — we patients are consumers! Whether you see the doctor once a year (like I used to) or are immersed in the health care system like those of us who are forever patients, your voice counts to the people making decisions. Getting bad “press” is a big concern and social media is pretty freaking powerful.
Here’s what every single patient can do to ensure that your voice is heard:
- Fill out surveys. My cancer center does a few surveys for the entire center and they usually get less than 100 responses. Out of thousands of patients, less than 100. The administration makes decisions based on those few responses. CRAZY!! I also get a link for a survey after every single appointment and I make a point to fill them all out. The people who are looking for data, look at this information.
- Comment Cards. At nearly every desk, there is a survey available. If you have good service, not great service, terrible service, no service — TELL THEM!! Those comment cards are read and compiled and administrators don’t know what they don’t know.
- If someone does a good job, tell a supervisor! So many amazing people toil away every day and the people who usually comment are the ones who are mad, so remember to give kudos where warranted.
- Remain calm. Even when we have a legitimate complaint, if you yell or curse or make personally disparaging statements, no one can hear the facts. Yes, I know I have an advantage here — I’m able to apply my cross examining skills and reduce most people to a puddle of tears without raising my voice or ever using objectionable words. This is a skill I’ve spent decades perfecting and I don’t expect others to have the same ability. It is important to remain calm, though, so your concerns are heard clearly.
- Ask for names and extensions. In order for administrators to be able to trace what has happened and how to address it, they need details. Keeping dates, times, names, and how to follow up with that person is key for this.
- Ask for follow up at specific dates/times from specific people. I’ve learned the hard way that we can’t expect something to happen unless its on someone’s to-do list. I’m now accustomed to making sure I know who is responsible for what and when. This is pretty key.
- Document in writing. Whenever I’ve addressed an issue with someone, I get their email and follow up with a synopsis of the conversation with a copy to their supervisor. This may seem like overkill, but legitimately, sometimes people hear things differently and having it in writing will really really help in the moment and in the future. Plus the emails are date and time stamped and often provide a read receipt, which really really helps with accountability.
- Follow up and ask for deadlines. This is key. If there is an issue that doesn’t have a deadline to be resolved, then sometimes it helps after the fact to ask for the tasks to be broken down and have deadlines for following up. Since we are the patients and we this is our life, we will be more concerned than a staff person who is doing lots of things.
- Follow up and follow up. The squeaky wheel gets the grease is a known saying because the people who are checking in and are top of mind for a staff person will get addressed first. There is probably a fine line between being a squeaky wheel and overkill, but that’s a line that can be hard to walk.
- Give kudos when something changes. When we are successful, don’t forget to say thank you. Don’t forget to give credit. We are all human beings and as much as the people at our centers and doctor’s offices are there to serve us, we also need to remember that they are carrying thing outside of their jobs. I completely admit that when I’m stressed, in pain, and struggling, I’m not very nice (see above the cross examination skills) and it’s important to circle back and apologize if I’ve gone overboard.
When our voices are heard, things change. Don’t discount the value of your efforts and your voice. If anyone reading this is considering wanting to effect change, I’m happy to discuss specifics with you from my professional and personal experiences if anyone is struggling with what to do or when or why or how. My default is probably more direct and more aggressive than others and I freely admit that each person needs to handle this in their wheelhouse because one size does not fit all.
We are #StrongerTogether!!