I have often heard health care professionals in various environments say, “If you’re nice to the nurses and doctors who take care of you, you’ll get better care.” As a bedside nurse myself, I understand the sentiment. No busy health care worker loves being met with antagonism or pressing demands that don’t strike us as critically urgent.
But when my husband and I both became patients with serious illnesses last year, we learned the clinical pitfalls of being the nice patients. I am left wondering how patients should be expected or permitted to advocate for their own care without worrying that they will be frowned upon or brushed off because they’re perceived as “difficult.”
First cautionary tale.
In early 2022, I discovered a small lump under my right breast that I initially wrote off as a cyst. Surely, I told myself, as a woman in her mid-40s with no risk factors for breast cancer, this had to be benign. A screening mammogram in May 2022 gave me an all-clear, and I went on my way.
But by November, I knew the lump had grown. I reached out to my PCP to ask for a diagnostic mammogram, and he emailed back a casual reassurance. “I know you’re worried, but I’m confident this is just a benign fibroadenoma. I want you to come in person to see me first before we proceed with more tests.” The next appointment wasn’t open until the end of January 2023.
I felt acutely aware of how I might come across as the paranoid or hypochondriacal woman, or as the cocky nurse trying to play my card of “Hey, I’m a health care professional too.” I hesitated for a day, but my now-nightly self-exam told me once again that this lump had most definitely grown, and this was not normal. So I pushed back.
“Dear PCP,” I wrote, “we both know that even after the in-person exam, what we’ll need is the diagnostic mammogram and probably an ultrasound and biopsy to know anything for sure, so could you please just order them?” My PCP acquiesced without further resistance. Sure enough, it turned out to be invasive ductal carcinoma, and so I started on my journey through my lumpectomy, radiation, and hormone therapy.
‘Time is function’: my husband’s story.
Just after I started hormone therapy, my husband Steve had an outpatient procedure for some speaking and swallowing issues. In the two weeks after the procedure, his postoperative course morphed from the expected pain in his throat to neurological decline that was ultimately attributed to an epidural abscess that had developed and was severely compressing his spinal cord. He was rushed to emergent surgery and then spent a month in a rehab facility. He has recovered enough to eventually return to work, but now has some significant deficits.
During the period when he was still getting worked up for his unexplained neurological decline, the initial two MRIs of his spine did not capture the abscess that was slowly growing and would blow up in just a couple days, bringing him precariously close to complete paralysis or death. Doctors scratched their heads at the apparently ‘clear’ MRIs and increased his pain medications.
When he became unsteady on his feet, he went to the ED, an environment where triage is the main driver for clinical attention and decision-making. For the 32 hours he spent in the ED, my husband’s vital signs were stable. As the perpetual ‘nice guy,’ he remained calm and quiet, without complaint despite excruciating pain with movement, and didn’t emphasize the extent to which he could feel himself losing function in his extremities.
“It’s hard for me to hold my cell phone up, even with both hands,” he told me.“I tried to reach for something in the room and I fell onto the floor of the ED, and it took them about 20 minutes to realize I had fallen.”
I was too overwhelmed, trying to sort out logistical needs with our kids, trying to make sense of a rapidly changing situation (after just barely stabilizing out of my own health crisis), to think clearly about his clinical situation. Fortunately, a physician friend checked in with my husband by text message and grew alarmed when he heard how quickly Steve was declining. This friend advocated on our behalf for a neurosurgeon to weigh in more quickly than we would have asked for, prompting a neurosurgery consult, which prompted another stat MRI, which finally identified the abscess that was now visible on the scan. At 2 am, my husband was transported to a bigger hospital where he underwent decompressive surgery at 6 am.
‘Time is function’ in these cases. We understand now that if we had waited even one more day, my husband would likely have become permanently paralyzed, or would have died.
Putting ourselves in patients’ places.
I am struck by how much we wanted to be the ‘nice’ patients. As a nurse myself, I was sensitive to how pressed for time all these health care professionals surely were. I wanted them to know that I understood their stressors and respected all their work. I was also terrified and felt very much that my husband and I needed prompt attention in our respective situations, sooner rather than later. And I was shocked at how tricky it was to navigate these nuances.
I recognize the systemic issues at play that make it difficult for health care workers to give in-depth attention to every anxious patient and family member. I still don’t have a desire to become an overly ‘squeaky wheel’ in future appointments for myself or my husband. But I do need to ask the question, are we as nurses aware of the pitfalls for the ‘nice’ patients and families who don’t speak up for themselves when they have concerns? Are we willing, and astute enough, to keep them on our radar when important questions remain unanswered about their clinical condition?
(For more posts by pediatric ICU nurse Hui-wen Sato, click here.)
Yes. I nearly died from a benign brain tumor b/c my doctor was sure my symptoms were anxiety related. My eye doctor is who ultimately saved my life by seeing “something” wasn’t right and referred me to a neurologist the same week who got me a same week brain mri who then called to say “go immediately to the ER. You could die.” Otherwise, I’d have had to wait for 3 more months for said brain mri to show my severely shifted brain stem, necrosis, and hydrocephaly happening.
I couldn’t agree more. Agree to what? As a professional patient advocate, this is something to consider and decide where you are as professional providers. It’s not just important but it’s very important. What to do? Just pull your head out and listen up!! I have endured! Come on! All patient providers!! Stand up and be accountable!
We need to encourage people to be kind, not nice. Nice is passive. Kind is assertive. Assertiveness is necessary in an understaffed and overwhelmed healthcare system.
I was the nice patient after a lobectomy. Turns out nice meant able to ignore as I wasn’t demanding. It eventually evolved into having to ring for scheduled pain meds before someone would walk into the room. We shouldn’t have to demand to receive basic care.
This reminds me so deeply that it’s easy to assume that if a patient or family has a concern, they’ll bring it up with me. However, they think we’ll ask if there’s something to be concerned about! And in the end, it’s on us to lean in and ask more questions, watch more closely, and more than anything just give space and time for patients and families to recollect their questions and concerns before we leave their bedside for the next task.
You are so right, in that each side really does wait for the other side to speak. I also realize now that as the nurse, when my patient and family tell me “No, we don’t have any questions right now,” I shouldn’t just take that as face value as one and done. They may have a ton of questions, but just haven’t even figured out themselves what those questions are, or who/how to ask. They might be embarrassed that they already asked the question, but remain confused or can’t remember the answers they received.
i am an RN. for years. I had headaches and the doctors dismissed it as female issues. Turned out I had a hole in my heart. After I had a stroke, they took it a little more seriously.
I don’t think we are taught how to advocate for ourselves. We just learn how to do it through proxy. Every person’s journey is individual, and how much we speak up has a lot to do with how we empower ourselves. I think as women we have a long way to go.
No one ever wants to be the ‘lesson learned’ for their caregivers, and I’m so sorry you suffered a stroke as a part of your journey. Self-advocacy is incredibly hard, and you’re right – it’s not taught at all. I had a hard time doing it for myself, and then when I was the proxy for my husband, I still had a hard time in that situation too. So many very real issues here.
I have been a nurse 39 years. I agree that we try to be “nice” recognizing the issues involved in staffing etc . I found myself stepping out of “nice” when I firmly advocated for my 23 year old son with an infected head wound. It was the night after Christmas and hard to secure a neurosurgeon to open the wound as he was septic and experiencing increased facial swelling. A general surgeon looked at him but was hesitant to work “that close to his brain.” I called our primary and requested if the paged, on call neurosurgeon did not come within a half hour I wanted him transferred to an accepting neurosurgeon in another hospital. The surgeon came, was a little annoyed and then spent several hours in my son’s head cleaning out debris that another doctor had left in there when he needed sutures. He is thankfully fully recovered. While the swelling was increasing, I watched an experienced RN come in his room, hang his iv antibiotic and never LOOK at him! I called her attention to the swelling and she was like oh yea..when are we going to staff so nurses actually look, touch and listen to their pts? I don’t know if my son’s outcome would have been so good had I not been there and known how to “work” the system.
Daun, thank you for your story. I’m so thankful your son is ok now, but am so sorry you even had to go through that very scary situation. It is so sobering to switch over to the patient/family end of things, and witness the shortcomings of the healthcare system from that very personal vantage point. So much change needs to happen.
Thank you for sharing your journey into the shadows of serious illness. It is a powerful reminder that in the complex milieu that is health care today, nurses must maintain a caring, vigilant presence whether for our own health, the health of our loved ones, or the patients entrusted to our care. I hope you and yours remain safely tucked in the light of healing.
Thank you so much, JoAnne. I find myself thinking a lot about how I sat at such an intense level of over-responsibility last year, between monitoring myself, my husband, taking care of my kids and taking care of my patients, that the 24/7 hypervigilance became beyond exhausting. Sometimes we go into survival mode and just do what we have to do as individuals. But this now feels once again like another case for better staffing and better patient ratios. When one individual is stretched beyond their brink, they are going to miss things. We need a bolstered team so that we can all share the burden of vigilance in a way that isn’t so overwhelming. Thank you for your well-wishes.
Thank you for your article, Hui Wen. It brings up the reminder that nursing is an art as well as a science. We practice the science of nursing efficiently and professionally, but I wonder if the current state of the profession has lost the art of nursing—the art of listening, of being able to “read between the lines”, to be completely present at the bedside without distraction, so that we really hear what a patient is telling us. And that sixth sense that we all have—-being able to look at a patient, before we look at the monitor, to know that something isn’t right. We are so tired, short staffed, sometimes overwhelmed, that I fear that the art of nursing is being lost. We have just completed a randomized control study that showed that “authentic presence” increased dramatically (as well as reductions in burnout, ptsd, anxiety) when nurses learn and practice the Transcendental Meditation technique. http://www.tm-nurses.org Amy Ruff BSN RN
I am that “nice” patient/ family member/ retired RN. My husband was very ill with complications secondary to Covid and a neurological degenerative condition. He had excellent care. But there were a few times when I had to speak up, one, a PT assistant got him up for therapy prior to his receiving a medication to help his hypotension. Of course, he became dizzy and almost fell. And unfortunately, this young woman was hateful about it to me when I suggested using wheeled walker to return him to bed( he could fall) She ambulated him back instead. This only happened once! In future, he got meds before therapy or they did his later in morning. It is a fine line between being involved and interfering, but I did baths, linen changes, turns, measured and recorded I and o, and helped as much as possible. There was also a situation where a scheduled med he takes at HS for leg spasms due to his disease was written as a PRN for anxiety. I had to get that corrected, easy “peasy”. It is important for family to stay with loved ones. Again, we have and had excellent doctors and nurses. But today, with the staffing and acuity issues, it is just good to have extra eyes and ears. Plus my husband had several consultants: I could rattle off a brief concise timeline of events faster than it would have taken them to sift through the charts.
I am going to include one more example of advocating-for myself. About 10 years ago, I had all the physical symptoms of hypothyroidism, cold, fatigue, wt gain, Queen Anne eyebrows but numbers were normal. GP at time was into nutrition and exercise approach. Self referred myself to an endocrinologist and found out, yes, did have hypothyroidism, started on Synthroid, huge difference.
Thank you, Brenda, for sharing your story. It really is a fine line between being involved and interfering, and sometimes it’s almost a case-by-case, personality-by-personality situation.
In my case, I was stunned by how hard it was for me to be the family member of the patient. We have young children, and while we got a lot of help from our community, I still needed to be home most of the time with them and couldn’t stay at my husband’s bedside nearly as much as I wanted or needed to be. If it wasn’t for our physician friend intervening literally at the moment he did, we can’t imagine what outcomes my husband would’ve ended up suffering. It’s a terrifying thought. I now have so much more empathy for my patients’ family members, when they can’t be around 24/7, when they ask the same questions again and again, when their emotions get heated, all of it. I understand it all so much differently, and hopefully better, now.