Maybe You Should Disobey: Hospitals, Shame and Vulnerability

I’ve been watching the two TED talks given by Brené Brown, the Texas professor who studies shame and vulnerability. I was drawn to her videos for some reason and now I think I know why. I’m posting her second talk, about shame, here:

I’ve taught many subjects in my 20 years of teaching. I initially taught at a college where I was cross-appointed in both the English and Humanities departments. That’s a fancy way of saying the Humanities department hired me when one of their members fell ill. However, after subbing for a semester, I developed my own courses and instead of focusing solely on literature, I branched out and taught other subjects that interested me. In one of my courses, I focused on the importance of groups.

We examined many of the standard experiments from the middle of the last century: Solomon Asch’s study on conformity was detailed in his essay, “Opinions and Social Pressure;” Stanley Milgram’s frightening experiment on obedience was brought to life in “The Perils of Obedience”; and Erich Fromm wrote compassionately about disobeying in “Disobedience as a Psychological and Moral Problem.”

The first two essays were reports about experiments conducted in laboratory settings, settings where naive subjects were placed in difficult, arguably untenable, positions. These subjects had to disagree with either a peer group (Asch), or an authoritative scientist overseeing an experiment (Milgram). The stress experienced by these individuals, over having to make adversarial choices, was what interested both social scientists.

So what does this have to do with Brown and her study of shame?

I have spent the last four years navigating my way through the Canadian healthcare system and it has been harrowing at times. The shortage of medical expertise in this country has created an uneven system, a system that in some regions is woefully inadequate and frequently frightening. One pervasive and unsettling theme emerges when I look back at my experience: I spent a lot of time fighting off the manipulative strategies of a workforce that shames patients’ relatives into silence. And shame, as Brown aptly illustrates, is a powerful force when it comes to making people work against their own best interests.

As my mother went in and out of critical condition, for example, I was forced to steel myself against icy stares, some not-so-quiet mutterings about my behaviour and, on occasion, outright and aggressive confrontation. That the staff at my mother’s acute care hospital were overworked is indisputable; however, that didn’t stop them from working subtly and in concert to undermine me and other patients’ family members.

Like the naive subjects in Asch’s and Milgram’s experiments, I often found myself dealing with better-informed people who both outclassed and outnumbered me. My sense of alienation was heightened by the knowledge that the staff knew things but did not want to tell me: I once stood in the doorway of a nurse’s station and listened to a doctor, with his back to me, instruct the nurses not to talk to me, this after I made a pithy comment about the time it was taking for my mother to have a small, but lifesaving, procedure. It was frustrating because it seems at least some healthcare workers enjoy having the power to withhold information from desperate relatives.

I wasn’t alone with my experience. I can’t count the number of sorrowful glances and sighs and words I shared with other family members of other patients who felt just as powerless. This attitude bears looking into because these behaviours are aimed at distraught individuals already ill-equipped to deal with additional stress. 

However, what I found particularly insidious was how hospital staff used shame to control us. Despite posters everywhere admonishing everyone to be civilized, this is just not happening in some hospitals. Administrators are putting these reminders up to keep us in line, to let us know who is really in charge.  And although I’m sure men have their own stories about hospital horrors, I found I suffered most at the hands of female nurses. There was something about our shared gender that seemed to make things worse: I spoke my mind, which meant I was “unlady-like,” one of the worst sins a woman can commit in the über-hierarchical world of medicine.

In the second of her TED talks, Brown quotes a researcher out of Boston, saying that the qualities women feel most compelled to be are: nice, thin and modest. Additionally, women must “use all their available resources for their appearance.” Because I believe my gender played a role in the difficulties I had, I tried to integrate this into my hospital experience. How did I fail to conform to this standard and what consequences did my failure produce?

To start, I am by most standards thin enough to qualify as thin. So that is one quality I can strike off the list. And no nurse or doctor is in a position to judge whether or not I spend a lot on my looks, so that too can go by the wayside. However, what they did judge and where I did fail is that I often straddled the line between being nice and assertive. This called my modesty, such as it is, into question. After all, it’s hard to look modest when you are asserting that your information is better than the information you are being given; it’s hard to look modest when your face is wearing an expression that says: You are wrong or lying.

Nonetheless, I was not uniformly assertive and so my assertiveness, were it to be graphed, would look something like a wave. More specifically, I went through periods where I certainly doubted the information I was being given, but, depending on many factors, including how I felt on any given day, I would modulate my assertiveness. Overall, however, the more I doubted the abilities of a set of staff, or an institution, the more comfortable I felt increasing my level of disagreeable-ness. In other words, the more concerned I felt about the ability of a group to care for my mother, the more concern I would express verbally.

Of course this rarely went over well and I was met with various forms of resistance along the way.

How did it feel being disagreeable? Like Brown’s hypothetical women, I too suffer pangs of anxiety and regret when I step away from what is accepted civilized behaviour and step onto less stable ground where naming a problem is likely to create upset. Like the naive subjects in Asch’s experiment, the ones who chose belonging over being right, I feel the gravitational pull of conformity. Going against the tape in my head that exhorts me, as a woman, to be nice, came about primarily because fear for my mother’s life overtook my fear of being rejected. It also overtook my fear of looking unreasonable.

The following video, shot at my mother’s nursing home, captures a moment at the top of one of these waves, at a moment where I am naming a serious problem directly. Specifically, I am telling my mother’s nurse that my mother has been inappropriately drugged. Just as a warning, you may want to turn down your volume in advance: the panic I was feeling at the state I found my mother in caused me to exclaim loudly.

These episodes occurred rarely because articulations of this sort are the most challenging to staff members and often yield the greatest resistance. This resistance is often expressed through an escalating scale of denial, aggression and then, unfortunately, institutionalized punishment. In other words, this is when the F-word, raised voices and the indomitable Nurse Ratched all make an appearance.

For example, on the day my mother suffered her stroke, I was eventually asked to leave my mother’s ward. After using various strategies to get the nurses’ attention—I was nice, less nice and then finally hysterical–I was ordered out while at the top of the wave, right at the moment I was insisting that something was terribly wrong with my mother. I left because I was forced to and my mother’s stroke went undiagnosed until the following day. That window of opportunity, when the stroke’s devastating effects could have been mitigated or reversed, was missed. It was missed because I tried to convince a group of nurses that I was right and they were wrong and their response was to punish me. Banishment was how they did it and, not surprisingly, it’s the fear of banishment that made Asch’s subjects lie about what they were seeing and Milgram’s teachers use electrical shocks to punish their learners. Very few naive subjects were willing disappoint either the group or the supervising scientist and be sent home. 

But what are the more subtle strategies of shaming and coercion? If you listen to the words of the nurse, you will hear her trying to convince me that I am not seeing what I know I am seeing. Then she evades responsibility by referring to the prescriptions the doctor has decided my mother needs. She is, like the actors in Asch’s experiment, analogously using the same strategies to convince me that the correct matching line is incorrect. It is important not to underestimate the power these words have: this woman is a qualified nurse, who undoubtedly has the backing of her institution, and she is telling me, a layperson, that I am wrong. In a broader sense, it is also important to look at the numbers involved: patients’ family members are frequently outnumbered by knowledgeable staff like this nurse. Consequently, they often bow to group pressure and deny the evidence of their senses.

So now that I’ve told you about one of my failures, I’d like to tell you about my one of my successes.

My mother’s stay at the acute-care hospital was euphemistically described as “stormy” by a doctor who attended her. While I appreciate the doctor’s analogy, that word doesn’t quite capture the depth of the fear and anguish our family felt at the unevenness of the care my mother received.

My mother suffered from undiagnosed Arterial Sclerosis. Arterial Sclerosis, from what I can gather, is something of a catch-all term to describe vascular problems. For some it is a hardening of the arteries; in my mother’s case, she had a lot of calcium deposited in her system and it was limiting the flow of blood to her feet.

So her journey through the healthcare system started with a sore toe that over the course of a few weeks turned black. Black flesh of course signals the arrival of gangrene and the only solution is to remove it. While she was waiting for a secondary amputation—she’d already had the big toe on her right foot removed—she had tiny blood clots circulating through her system. These microscopic entities were coming from the unresolved infection in her leg and were forming a gathering storm in her lungs, forming pulmonary embolisms which threatened to cut off her airways.

The problem was that she needed to have a venous filter (venous coming from the root word “vein”) placed in one of the veins in her groin. The filter works like an upside-down umbrella and would capture the clots coming up from her foot. It was the only way of stopping the formation of pulmonary embolisms. The problem, I was told, was that there were no vascular surgeons at the hospital who could install it.

So when I was told she was likely to die soon, soon as in hours, I remembered that the vascular surgeon in Toronto—where she’d had an angioplasty on her leg—had given me his phone number and suggested I call if there were any problems.

Well, there were problems, but not all of them concerned my mother’s condition. I knew, for example, that if I called him, I would be risking the wrath of the doctors at my mother’s much smaller hospital. I knew they would likely resent my interference, resent the fact that I was calling on people whom I perceived as having more expertise, and I would have to deal with the fall-out afterwards. I had already gotten an idea of the way things worked at the hospital and, given the antagonism that had formed between myself and the staff there, I knew my fears were justified.

However, I set aside my trepidations when I was able to fully process the fact that my mother was dying. I remember, very clearly, sitting at an intersection in my mother’s small town and struggling, physically, to punch in the vascular surgeon’s phone number on my cell. My struggle had less to do with any physical problem and more to do with the professional lines I knew I was crossing. So I had an argument with myself, in my head, and it went something like this:

Irene 1: Okay, so you don’t want to call.

Irene 2: No, not really.

Irene 1: So you don’t want to call because you don’t want to piss off the doctors here. Am I right?

Irene 2: Yes, that’s right. I’m afraid of what’s going to happen.

Irene 1: Your mother is going to die is what’s going to happen. And it’ll definitely happen if you don’t call.

Irene 2: I know, but everyone is going to be so mad.

Irene 1: You don’t want to call because everyone’s going to be mad at you? And so when your mother dies, are you going be able to live with the fact you didn’t have the courage to do this?

Irene 2: Oh shit.

I drove the two minutes to the hospital, pulled into a parking spot and made the call.

And things went exactly as I’d predicted. The vascular surgeon’s secretary told me I was wrong. “Only doctors can make the kind of request you’re making and you’re not a doctor.” I told her I understood that my request—to have my mother taken back to the Toronto General—was not appropriate, but my mother was dying and I didn’t know where else to turn. She told me she was sorry, but she couldn’t help. She then quite memorably added: “And don’t call here again.”

An hour later, standing at the foot of my mother’s bed, I did exactly that: I called her back. This time I was sobbing. “I need help,” is all I could manage. A few minutes later my phone went off and it was the vascular surgeon himself. “I understand you’ve been bothering my staff,” is how the conversation started.

What followed was a tense couple of minutes where he told me a radiologist—a doctor who examines x-rays—could install the filter and surely the hospital there had one? I asked him to call for me because no one was listening to me anymore. The upshot was that about 30 hours later, much longer than anyone expected my mother to live, she had the filter installed and her life was saved.

What’s remarkable to me is that I struggled so hard with the issue of defying the authority of the people—the surgeons, the doctors, the nurses, the clerical staff—looking after my mother. I had a hard time understanding exactly what force was at work when I physically struggled to punch in the Toronto surgeon’s number.

And that was when I remembered the essays I’d taught in that class years earlier. The essays that discussed disobedience and defiance and described how difficult it is for individuals to stand alone against a group. I re-read some of them when I came back to Montreal because I found them comforting. They explained that what seemed to be a particularly bad case of cowardice was instead a “force-field” (Milgram) of persuasive power.

I’m writing this because I think it’s important for those of us living in Canada to recognize we are dealing with a healthcare system that is under stress. It’s important for us to realize there are many instances when we shouldn’t take no for an answer and when we shouldn’t feel intimidated by our lack of medical knowledge. We need to take the risk of insisting something more proactive be done when it is ourselves or a loved one who is suffering, even when that risk means being the one in ten who holds a dissenting opinion.

Another writer I admire, Doris Lessing, wrote an essay about disobedience and there is a line from it that I’ve carried around with me for years. She wrote about how human beings have a tendency to “obey the atmosphere” and that for many of us, our most shameful memories involve instances when we obeyed the atmosphere at the expense of either our own or another person’s well-being: those moments from childhood where we may have joined in when another child was being bullied; those moments when we gave into peer pressure and said yes when we meant no; those moments when we followed the crowd and looked away from another person’s suffering.

I can’t state this strongly enough: The bullying behaviour of some healthcare staff in Canada is a phenomenon that deserves study. It deserves study because despite over-optimistic statistics that state otherwise, the level of human error occurring in Canadian hospitals is on the rise. My family’s experience, I’m certain, is not unusual.

Paying attention to all information—not just the information produced by doctors and nurses–is one surefire way of remedying the problem.

I’m adding this final video to show what proper care looks like:

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