Meet Dr. Mom
I am not a physician. I am not the CEO of the Canadian Patient Safety Institute. I am a mother/daughter/(ex)wife/patient who has interacted with the Canadian healthcare system and never felt a lack of power – except once.
Case #1: At 16 I took myself off to the emerg one night because I was experiencing extreme lower abdominal pain. During my visit the doctors decided an internal examination was required. In the hustle and bustle of the emergency department that night, a group of medical students were doing an ER rotation. As the doctor and nurse prepared me for my internal exam, the students gathered in my little curtained cubicle. I don’t recall being asked if it was okay if they observe. I do recall thinking that here I was with a group of what appeared to be people close to my peer-age and I was on the table and they had the best seats in the house. I stared up at the ceiling with tears of embarrassment streaming down my face. The exam didn’t turn up anything but the sting of embarrassment lasted for quite a while.
I can’t recall who I told that story to but when I reached the end the person asked me why I hadn’t requested that the students leave. My response, “I didn’t know I could”. “Really? Of course!” That was all I needed to hear.
Case #2: My mother asks me to join her when she is undergoing new treatment strategies. “I never think to ask the doctor the questions you do”, she tells me. Even when I pepper her with questions to ask she says she doesn’t want the doctor to think she is difficult. I roll my eyes slightly and agree to go with her to the next appointment.
Case #3: When I suspected my son had fractured his arm for the third time in reasonably rapid succession, I took him for yet another x-ray. He was x-rayed within 20 minutes of being triaged but we waited for a while for the radiologist to review the x-ray. As it was our third time with this routine, I asked to see the x-rays – I had spent hours looking at the previous ones of my son’s other two fractures. Not seeing anything suspect, I wrote a note on the envelop to that affect but requested the radiologist call me at home if s/he saw something I didn’t. Then I took my son home. The radiologist did call. There was no fracture. We discussed treatment strategies for the pain and if there was anything else I needed to be aware of. We had been in and out of the emergency department in 45 mins.
Case #4: Recently my mother told me about a woman who underwent surgery and received no discharge plan when discharged from the hospital. She developed a blood clot in her leg that detached and made its way through her body. Unaware of what the problem was she visited her local ER several times, on foot, before the problem was accurately diagnosed. No one told her what signs and symptoms she needed to watch for – and she never asked.
Case # 5: Many years ago my friend’s child developed an appendicitis. Her pediatrician was a family friend. He called the hospital to alert them that his patient was arriving with a suspected acute appendicitis. My friend arrived at the ER, her daughter was triaged and they were left in the waiting room for hours. She held her daughter as her daughter’s appendix burst in the ER waiting room and her body became septic. She later told me that she knew her daughter’s symptoms were worsening yet she felt powerless to alert the nurses. Why?
Cases #6 and 7: I am not a “high-maintenance” patient/family member but I am not a silent one either. I am proactive in whatever way I can be to minimize the burden and maximize the care. When my children have agonized in an ER waiting room I have advocated for faster treatment when their symptoms have deteriorated. (I have also consoled them and reminded them to be patient when their symptoms have not.) When they have been hospitalized, I have asked for a discharge plan when I haven’t received one.
When I was scheduled for minor surgery I queried my surgeon about his surgery schedule and when he was planning to take a break and refuel – I was fifth on his list and knew that meant he’d be doing me around lunch time and after four others. I wasn’t antagonistic but I was persistent. He was dismissive at first, but answered reassuringly when he realized I wasn’t letting go. I talked to him about whether there was a surgical check list and who was in charge of monitoring my vitals.
Perspective: Ever since that ER visit when I was 16, I have believed that the care I and my family receive (rightly) depends on a partnership with the medical community – I do my part and you do yours. If I say nothing: 1) when I am uncomfortable with what is happening; 2) when I have been given the role of “watchful eye” (when waiting for care) and spotted a problem; or, 3) when I don’t know what the warning signs are that I should be watching for, I am failing my side of the partnership. I failed once when I didn’t speak up to minimize my (girlish) embarrassment and preserve my (girlish) dignity. In my quest to ensure that I and those around me receive the highest quality of care possible, no one has ever been hostile when I have asked about patient safety issues. No one has delayed or withheld care when I’ve alerted them about a problem. No one has asked my mother to go alone to her medical appointments to ensure a speedier thru-put.
I often wonder how we created a system that renders many patients powerless. And I wonder sometimes why I am not someone who does become powerless at the very time when a voice is needed. Perhaps it’s because of my ongoing curiosity and interest in medicine. Perhaps it’s because I grew up encouraged to stand up for myself and those around me. Perhaps it’s because when I do, the response is often of appreciation rather than annoyance. Whatever the reason, in an effort not to perpetuate this creation, I am trying to teach my children how to be good healthcare consumers, to be helpful, to do their part, and to use their voice (respectfully) if and when they need to. And, I continue to ask questions and use my voice (respectfully) when I need to.
About the AuthorKira Leeb is a mother of two boys and one girl. Her day job is to measure health system performance
Morgan Holmes wrote:
Posted 2011/08/16 at 11:51 AM EDT
The stories you recount here resonate strongly with me and, I'm sure, many other readers too. Even though it's 2011, many people still either regard health-care providers (esp physicians) as absolute authorities whom it would be unseemly to question, or the overall veil of medical mystery just appears too hopelessly impenetrable (esp when we're stressed out by an emergency episode).
I can imagine this topic of, generally speaking, multi-dimensional "patient empowerment" (theories and tactics) would make a good focus for a special issue.
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