A disabled sister is at the heart of a memoir about how we train doctors
By Louise Kinross
We Are All Perfectly Fine takes us into the emotional world of medicine from the doctor's perspective. It's structured around an American meditation retreat for burnt-out doctors that author Dr. Jillian Horton (above left), a general internist from Winnipeg, attends. Jillian and the other physicians are asked to write and talk about the feelings that bubble up when a beloved patient dies, or they make a mistake, or they can only sit with someone who's suffering, but not change it. "We all have these cases," she writes. "People who stalk us our whole lives. Things we often can't speak about, because we're supposed to be perfect."
Given how emotionally fraught the work is, the title of the book reflects the irony of how we train residents: "..we think we can program bodies, our bodies, to run without sleep or food, or hydration," Jillian writes. "We learn to work through utter exhaustion." When a resident is found sobbing in a storage room after a traumatic encounter with a dying mother and her young children, she's admonished by a staff physician: "This is an emotion-free zone," he says.
"We split from our bodies so we can learn to be doctors," Jillian writes. We spoke about her book and why it's dedicated to her sister Wendy (above right). At age six, Wendy had surgery to remove a brain tumour and developed post-operative meningitis, which caused complex disabilities.
BLOOM: The medical system failed your sister. First they missed diagnosing her tumour for two years. Then a doctor took it out on your parents, screaming at them when he was trying to convince them to institutionalize her. Was that an example of a doctor who had been given no training in how to cope with emotions?
Jillian Horton: That's a great question. Was this person unkind like that before medical school? Was this trait amplified by a sense of entitlement in medical school? Or was this a really kind person whose basic humanity was stripped away in medical training?
BLOOM: I'm thinking of another theme in your book, which is that doctors aren't trained to deal with failure, or with the limits of medicine.
Jillian Horton: I often talk about how we have a fixing impulse. We have a strong orientation towards believing that problems are things we can fix. You are absolutely right. When something crops up that we can't fix, often we feel helplessness and anger. We struggle to manage uncertainty. We have this fake script in medicine that uncertainty is something we can eliminate and control for. Sometimes we see that doctors, and other members of the allied health care team, have very little self-awareness to know when their frustration is something they need to pay attention to and work with. That's exactly why more self-regulation, emotional awareness and mindfulness need to be embedded at a really high level. Having been on the other side of this as a child, I know how traumatic the words of that doctor were to my parents. They leave a lifelong stain that hurts forever.
BLOOM: In writing about Wendy, you say 'that sister, my deepest scar. The origin of all the best parts of me.' What did you mean by that?
Jillian Horton: When I look at myself in the hospital as a clinician, all the things I think I do exceptionally well, my rarest gifts, they're all things I learned from her. You know, from reading the book, that my sister was almost profoundly hearing impaired. She was legally blind, she had severe dysarthria and profound behaviour challenges with impulse control. My entire approach to communicating with other humans was shaped by growing up with Wendy. My sister drives me to stay at a patient's bedside for 15 minutes as they struggle to communicate, in order to decipher one sentence, when my colleagues have left after a few seconds. We morally owe our patients that. And then compassion and acceptance.
My sister's behavioural challenges were what you see with an acquired brain injury. She could really lash out and hit you and drive you to the point of feeling, I don't even have any words for it, frustrated. But then the moment would pass, and she had no short-term memory. Suddenly she'd say 'Jilly, could you come help me find my country music magazine?' And how could you not forgive? The feeling of love and acceptance we had for her was so natural.
Think of patients, and the penalty that is so often exacted in the hospital on someone who has behaviour challenges. 'They're difficult, rude, aggressive' will be written in their file. All of the negative adjectives. My sister gave me the understanding that a person doesn't choose to be in a situation where they can't control their emotions to prevent themselves from shouting. She gave me the understanding to soften towards people who are in those boats. She gave me a real patient-centred orientation. I grew up in a family embodying the motto 'Whatever it takes.' The medical model is to make the person fit into the model of care that exists, and to force them, using all of your body weight, into that space. The alternate way of thinking is that it's our job to accommodate.
Growing up, my parents asked for a private education assistant to support Wendy. The response was: 'If we do it for you, we'll have to do it for everyone.' The implication was 'Why does she deserve that?' All of your readers will be familiar with this, with how everything is such a fight and a hassle. Some things are better now, but a lot of what's better is superficial. For example, you may be granted a support worker, or an educational assistant, but how it actually works, the quality of the person, none of those things are really guaranteed. Even the administration of self-managed care was a low-grade nightmare. My sister died in her own home six years ago. My parents, into their 70s, hired staff, took her to all her medical appointments, were responsible if staff didn't show up, paid all the bills, had all the meetings with the government. And lived in fear that her funding would be cut off.
I would never have wanted this education. I wished that it had never happened to our family. But I also know the legacy of that experience made me into a completely different doctor.
BLOOM: You describe medical school as a torture chamber: 30-hour on-call shifts and dying patients and doctors who expect you to be emotionless. Why, after decades of hearing about how toxic medical training is, are we still putting residents into these environments?
Jillian Horton: It is an absolutely fundamental question. I've shifted my career focus in recent years to begin to address this. I started out primarily as a frontline educator teaching and modelling behaviours on the ward for clinical rotations. Then I moved into an educational oversight role as associate dean. In recent years I've had more of a national scope, working with The Canadian Medical Association on a national strategy for physician wellness programming. It includes a lot of emotional awareness and regulation and dealing with your own pain—tending to it. I'm not talking just about a help-line, but teaching evidence-based skills. Also, I've shifted my writing about medical culture to mainstream media.
We've been putting this stuff in medical journals and we all read the journals, but no one else does. I try to shine a light on a public perspective. If physicians are unwell and burnt out, and one of the consequences is a feeling of emotional detachment from patients and an inability to treat patients the way they deserve, with dignity, the public needs to be part of the driving force for change.
We know when you work more than 60 hours a week in any profession you're at risk of burnout and mental health problems. There are very few doctors who work less than that. That speaks to how deeply immersed we are in this culture, and how abnormal the standards are. There's something called medical exceptionalism. It means we think we can do more than the average human, and that's what the commitment to medicine requires. When you suggest there's a special set of rules for one group, it's not hard to begin to think you're special in other ways. That's why some doctors can be rude and can scream at the parents of a critically ill child, which was the example I gave in the book.
BLOOM: Was the meditation retreat the first time you'd been asked to share your emotional reactions to working with patients?
Jillian Horton: It was the first time, in nearly 17 years of practice, that I'd ever done that in a structured way. No one had ever said 'Tell me about a case that still keeps you up at night.' There had never been an open-ended opportunity to talk about making a medical error. I had a couple of trusted colleagues who I might call and say 'This went so badly and I'm questioning this choice and I feel so upset about it.' But at no point in my residency training or in medical school do I remember an occasion with a preceptor or mentor talking about this in a structured way. A kind person might say 'That was a tough case,' but time was always so tight. It's incredible when you look at how tragic our stories are that we've never talked about them before in our entire career.
BLOOM: We did a six-week narrative group with our inpatient nurses, and many recounted work wounds they'd carried for years. Prior to the group, we interviewed the participants and they talked about their efforts to hide emotions like grief or regret. One of the most common comments after hearing other nurses share was 'I thought I was the only one.' They started seeing themselves in other's experiences and it elicited compassion for each other and for themselves. Is there any reason why listening to stories from veteran clinicians couldn't be part of the medical curriculum?
Jillian Horton: One of the biggest impediments is vulnerability. Physicians as a general rule, with wonderful exceptions, don't like being vulnerable. It isn't just a personal thing, it has to do with our culture. For most of us, showing any signs of vulnerability has been discouraged. People get push back, like when the doctor in my book says 'This is an emotion-free zone.' If you suggest you're depressed, it's seen as a moral or a performance failing. So people have a reality-based fear of being vulnerable and sharing stories about making mistakes.
More and more schools are folding the field we call health humanities into their undergrad curriculum. A constant barrier is that there are still some people who don't accept that this is part of developing a core competency, a mandatory competence. They think it's optional fluff. So we need champions at the highest level.
BLOOM: You talk about how painful Wendy's brain injury was for the whole family. But you and your parents got no emotional or practical help. Today we have support groups and other tools to help siblings work through their feelings. But it's still a really challenging area. When my kids were young, I always tried to get them to attend one of our sibling panels, but they didn't want to. And even now, I don't know if I've supported them properly. I've tried to, but some of it is so heavy.
Jillian Horton: Speaking as a sibling to you, as a mom, I don't know how anyone gets through some of these experiences. I'm a parent and my three children are neurotypical and have no health issues, and yet raising them is difficult. The level of chaos and difficulty in my childhood home never stopped. As I've gotten older and had children of my own, I can only ever understand how it took everything my parents had to survive day-to-day. It's so complicated.
So much about siblings depends on the individual child and how they see the world in relationship to themselves. In the early parts of my life, I was afraid to articulate any frustration to my parents. I didn't want to add to my parents' load. I felt 'How dare I complain?' when I'm the lucky one.
My other sister is still alive and we're very close and that was always her thing too. We still struggle to feel that problems that aren't the most extreme are worthwhile. It's hard to motivate yourself to psychologically seek attention for a minor medical ailment because you always have the subconscious feeling that it's stupid. Yet those are never things that were said to us by our parents. They never disparaged us.
BLOOM: What was the most challenging part of writing the book?
Jillian Horton: Making sure I honoured my sister's story—that I really told it in a way that was heartfelt, authentic, and that wasn't saccharine. I wanted to portray her full humanity and her life as worth something profound—as worth as much as any other life. Everything else was peripheral to that.
When you tell stories about patients, you need to find the voice that honours their experience and that inserts you in the story without you overtaking the story. I knew that if I were to change medical culture, the most powerful tool is my own story told as something that happened to me. When we're good at telling stories, we almost have an obligation to try to use that to activate people's compassionate imaginations. I don't know how else we are going to move the dial.
The experience of going down to the Chapin Mills retreat gave me the scaffolding of the story. Some physician narratives result in the person leaving medicine at the end. I wanted to find a way to stay.
BLOOM: What type of work do you do now?
Jillian Horton: I shifted from doing primarily acute care to working almost exclusively, from a clinical perspective, with people with substance abuse disorders. I have my own hospital-based clinic. About 40 per cent of my time is clinical, and the rest is medical education, teaching and administration where I work locally and nationally to influence the overall course of the culture of the profession.
