“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog. Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. This past February, we spoke to Sherri about her guest post (“The Conversation“). We found her observations on end-of-life issues as well as her own recent treatment decisions very compelling. We asked Sherri to tell us more about life on both sides of the bed rail–and as you’ll see, she had some excellent insights! In Part One, Sherri reflects on knowing too much as a nurse and yet feeling overwhelmingly vulnerable as a patient; in Part Two she offers some practical tips for patients.–Katherine O’Brien, Secretary, MBCN
I was born and raised in North Carolina about four hours from the coast. Summers were spent at the beach which is why I still love it to this day – everything related to water, swimming, eating all kinds of seafood, collecting seaglass, walking the beaches. My hope was to have retired to the outer banks of NC. Now I just spend as much time there as I can, while I can.
I am married to a great man and between us we have four grown children, two working, two finishing college this year! They have all been marvelous as the disease has gotten more serious. The kids often come to upstate New York where we now live and we always have a great time. We live near the Finger Lakes so wine tasting is almost always on the docket.
I will turn 55 late this summer and will probably spend it at the beach. Though not working now, for 25 plus years, I was a nurse. At the beginning of my career, I worked in the Operating Room and then eventually broadened my specialty to patient safety and process improvement. An ironic twist when I turned from nurse to patient, I wrote an article for the National Patient Safety Foundation (NPSF) the working title was Lying in the Bed Instead of Standing Beside It. At the time NPSF had a column reserved for the “Voice of the Patient” to allow those of us who were receiving care to write about our experiences to better teach caregivers what we, as patients, were really thinking. Below is an excerpt from that article highlighting some of the ways that I was impacted:
Mere months after my husband I relocated, I was diagnosed with invasive bilateral breast cancer. I received the diagnosis over the phone while the television cable repairman was working in the next room, boxes still stacked to the ceiling from our move. I was living in a state where I knew absolutely no one, and I was going to have to begin receiving health care in a hospital where I had no connections, did not know whom to ask for—nor whom to avoid—a lot like every other patient in the world. And I was afraid. Suddenly the patient safety officer was in the bed instead of standing beside it. I suddenly felt vulnerable. I had no appreciation of how long this feeling would walk with me over the next two years. All I knew at the time was that I wanted to go outside and scream, “Hey! I am not yet 50. And what do you mean cancer in both breasts? Isn’t cancer in one enough? I just had a mammogram a year ago. I get one every year. I am the ‘good girl’ who crosses all the t’s and dots all of her i’s. I just left a hospital that opened up a new cancer tower and now I find out I have cancer?”
The week I was diagnosed, I went to the hospital for my first exam and for the scheduling of an MRI. My nurse navigator greeted me and my husband by saying, “You must stop by the wig boutique when you leave. It is the most marvelous place with all sorts of choices.” I had not yet decided if I was having a lumpectomy or a mastectomy. How did she know I would be bald soon? I don’t think I even knew her name at that point. I was so rattled by that comment I remember little else of the conversation and was glad that my husband was there to hear it on my behalf. Later I thought about all those patients who come alone and are smacked by something we as health care professionals say that has a completely different impact on the patient than we ever intended.
A week later, I had not heard back about the results of the MRI. I called the nurse navigator, who said she would contact the physician. Four calls and two weeks later, the surgeon finally called me back and told me he had just reviewed the MRI with the radiologist. This is first thing he said to me: “Your MRI is a nightmare.” I was sitting on the couch alone in my new home and that word continued to reverberate in my head. Luckily I had a pen and paper, and as he talked I scribbled every word he said, hoping my physician-husband would translate for me.
Over the next year, after three surgeries and four rounds of chemotherapy, my perspective on patients and what is said and done to them took on a whole new meaning. I had to tell my nurse, new to the profession, how to catheterize me. Later, I had to ask a more experienced nurse to don sterile gloves after she contaminated her first pair in front of me. To be clear, I received exceptional care. I relay these stories now more aware than ever of how similar events are occurring all across the nation. I now know what it is like to wait fitfully, tearfully for pain medication—to press the call button and wonder if and when it will be answered. (It was always answered, but that fact did not lessen my anxiety each time I used it.)
The truth is, patients may feel pervasively vulnerable lying in a bed. I had been told to expect a postoperative dressing change to occur in the office. This was the one thing that I dreaded the most. While wrapped tightly with bandages and with the tissue expanders in place, I could pretend that I was pretty normal looking. But I knew when the dressing came off, my ability to pretend would be over. I was shocked and unprepared when the plastic surgeon flew in while I was still an inpatient, walked up to the bed and began tearing the dressing off my chest (no hand hygiene by the way). Since this was not the plan I had been told, I didn’t understand what was happening. I said, “You’re not taking off my dressing, are you?” Yes, he answered he was. I lay there in disbelief. I said nothing for fear of what I might say or in fear of what he might do. He said to me, “You don’t seem very pleased with the outcome. This is fantastic work!”
Later that day, one of the nurses came back and told me that indeed my lack of enthusiasm had him talking about me at the nurses’ station, wondering aloud why I wasn’t more pleased with the results. He was a great surgeon in every way, and today, two years later, I could give him the praise he wanted, but not then. Are we as health care givers in tune, perceptive, able to merge a task with the human component of compassion?
I think we need to speak for patients instead of asking them to speak up. While I agree that patients should be active participants in their care, I didn’t have the voice (or the courage, energy, or fortitude) to ask my surgeon to postpone the task, or call a nurse in to be with me while he changed the dressing. Ultimately, the nurse manager reminded the plastic surgeon that I had lost both breasts within the last 48 hours. To expect someone to be happy under those circumstances was asking a bit too much. She spoke for me because I couldn’t speak up.
Many months later, after my chemo treatment, when I had just gotten brave enough to face the world without my hated wig, I went to the hospital to have lab work drawn. While standing in line, I heard a phlebotomist say, “Hey there, Buckwheat.” I turned to see who was standing behind me but saw no one. I realized she was talking about me–and I nearly died of embarrassment right there. I had begun feeling a bit like my old self, and this woman, for reasons I still do not understand, thought she was being funny. I left the lab without having my blood drawn that day. Instead the hospital’s patient advocate found me (thanks to my husband, who worked there). After telling her my story, she advocated on my behalf with the laboratory department. She spoke up for me when I was too embarrassed to speak up for myself.
Portions of this article originally appeared in “Speaking for the Patient” in the P.S. Blog, published by the National Patient Safety Foundation; used by permission of Patient Safety Insight. All rights reserved.
Coming Next: Sherri’s Inside Scoop on Improving Your Patient Experience