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'In the absence of care, medicine is dehumanizing'

By Louise Kinross

Medicine is made up of two things: treatment and care.

But patients and clinicians alike are suffering from a devaluing of care in the health system, says Kristen Slesar, a psychotherapist who works with trauma survivors. Slesar, who supports child witnesses at the Bronx District Attorney's Office, was speaking at a three-day narrative medicine workshop at Columbia University in New York.

“Treatment is the science side—the technology, the medication, the hospital bed,” said Slesar. “Medical competence has become about how many machines and tests and things we can apply. Patients need treatment. But what happens when treatment fails or the patient dies? What happens when there is no treatment?”

The other side of medicine is caregiving—“the efforts to make someone feel physically comfortable or emotionally accepting of pain or imminent death,” Slesar said. “Care is about the inbetween moments—it's about how treatment is delivered." 

The best care happens when a clinician attends to and honours the patient's story in a way that makes the person feel understood. “Suffering is not a neutral experience,” Slesar said. “There's nothing neutral about life-changing illness or injury or the shame, stigma, fear, hope, doubt and dread that go with it. Interventions [by clinicians] are either positive or negative. If the encounter doesn't add to healing, it's hurtful. In the absence of care, medicine is dehumanizing.”

Patients are consistently unhappy, Slesar said, not with the results of their medical treatment, but with the experience of receiving treatment without care.

Care—which demands authenticity and vulnerability on the part of the clinician—is given short shrift in our medical system, Slesar said. “Offering care is equated with consumption of time and providers are forced to see more patients than is fairly and equitably justifiable. When the quality of interaction with patients is seen as a function of time spent, and there is no time, good medicine isn't consistently offered.”

In addition, caring for patients is construed as “crossing into 'emotion land'—as unprofessional and subjective, as if by being authentic and compassionate we compromise our smarts and whatever we learned in medical school [flies] out the window. We deny that we are real people who are just as permeable as our patients.”

Doctors are encouraged to stay emotionally detached as a way of protecting their mental health, Slesar said.

“Burnout causes mistakes and is incredibly common and is something people don't want to talk about,” said Slesar. “Burnout is a major cause of poor healthcare delivery. It's the cause and symptom of significant damage and suffering, not just in patients but in [clinicians].”

Not only are sterile medical interactions bad medicine for patients, but they hurt physicians, Slesar said. “Physician satisfaction comes from relationships with patients.”

But to have rich relationships with patients, doctors need to be able to think and talk about their own emotional reactions to working with people who are suffering.

Just as patients need a clinician to witness and help them find meaning in their experience, “we need to acknowledge who we are and what we do as providers. We need to be able to voice these doubts and fears: the sadness of the first death certificate, the embarrassment of not knowing an answer on rounds. We're loathe to talking about our fears and mistakes. We can't sit with uncertainty or fallibility.”

Writing groups for clinicians are a forum for “giving and receiving testimony, which isn't about the facts, but about the experience and the emotion” of practising medicine. “It's that we do it together,” Slesar said. “One person reaches out for a way to express and the other reaches towards to bring it in and let the person know they are not alone.”

In narrative medicine, participants read and discuss a passage from literature, then respond to a writing prompt, writing for three to five minutes. Those who are comfortable read their pieces aloud. “We hold pieces of writing out in front of us in this loving, benign ritual,” Slesar said. “We don't focus on the quality of the writing. We write about ourselves, and even if the question is about our practice, the writing is self-revealing and self-creating. We see things differently and we see different things.”

Unfortunately, efforts to 'care for the caregiver' like this are often pathologized, Slesar said. “You're accused of being weak. Or maybe you're not cut out for the job. And when you do take time to take care of yourself you feel you're being indulgent. Self-care may even be construed as immoral.”

Given the high rates of physician burnout and suicide, “nothing is more needed than nourishment for the imagination,” Slesar said. “What quality of clinician do you want to be? How can we go from the current state of affairs to something better?”

Medicine done well is a “co-construction between patient and provider, a giving and receiving. The patient ceases to be an injury or illness and becomes a person because we are a person. There is an openness to suffering by both participants.”

What does IQ have to do with happiness?

By Louise Kinross 

I’m a little stumped.

I read this piece called
Genetic screening to enhance IQ should be embraced in The Conversation. In it, an ethicist argues we should test embryos for gene changes associated with low intelligence (70-85) and discard them because of “the bad things” low IQ portends: poor job opportunities, low income, increased risk of poverty and welfare dependency, greater likelihood to drop out of school and increased chance of incarceration and being murdered (quite a mouthful).

This 2013 Psychological Medicine study seems to support the association between low intelligence and less happiness. Of
almost 7,000 people, those in the lowest IQ range (70-99) reported the lowest levels of happiness compared with those in the highest IQ group (120-129). When asked to rate their level of happiness, 12 per cent in the lowest group said “not too happy” (that doesn’t strike me as a huge number. I don’t have the full study to look at what portion of the high IQ group said they were “not too happy.”)

However, the study authors suggest that it's not the degree of intelligence per se that leads to happiness, but the fact that people with higher IQs have better incomes and health and less mental illness.

But isn't stigma one of the main reasons that marginalized groups make less money, have poorer health and experience more anxiety and depression (I'm thinking historically of women, minorities and people with a range of disabilities)? What role does discrimination have to play in these outcomes?


Remember the 2012 French study that showed that even adults who outwardly say they accept kids with disabilities carry a negative bias against children with Down syndrome at an automatic, unconscious level (deduced through implicit-association testing)? In other words, they react to people with Down syndrome based on a negative stereotype they may not even know they have. “These implicit associations are the result of social values...carried by our culture,” says the lead researcher Claire Enea-Drapeau, a school psychologist in Marseille, France. “They are likely deeply embedded and difficult to break.”

However, in spite of the pervasiveness of automatic bias against kids with Down syndrome, this 2011 American Journal of Medical Genetics study
found that nearly 99 per cent of 300 people aged 12 and over with Down syndrome say they are happy with their lives; 97 per cent like who they are; and 96 per cent like how they look. 

How does this finding fit with the Psychological Medicine research above?

Further, would we ever expect people in the general population to say they were almost 100 per cent happy and okay with themselves? The AJMG study seems to fly in the face of this statement from our ethicist above: “It is pretty clear that low-normal levels of cognitive function tend to reduce well-being.”

Then I googled IQ and depression and found this article about how the rate of suicide in undergrads at Harvard over a recent five-year period was two times the national average for college students. Wouldn't Harvard students be among some of the brightest? And, according to the earlier research, happiest?

I remembered 
this BLOOM interview we did with Holland Bloorview neurologist and autism expert Evdokia Anagnostou about how high IQ doesn’t predict happiness in people with autism. In fact, there's a high rate of anxiety and depression in youth and young adults with higher-functioning autism.

I felt like I was being buffeted back and forth between arguments suggesting that happiness was dependent on high intelligence and those suggesting it was independent of it.


And I started to think about how perhaps we were looking at this in a simplistic way. I was reminded of Harvard psychologist Daniel Gilbert’s Stumbling on Happiness—a book that looked at common blind spots in how we imagine the future. These include a lack of empathy that allows us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience.

Gilbert said this helps explain a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why most people assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite (in fact, sometimes they rate their quality of life as better post injury).
I wondered how much resilience on the part of children with low intelligence and their families might ameliorate some of the supposed negative impacts.

During this time I read A Healing Family, a memoir by Japanese Nobel Prize winner Kenzaburo Oe, about raising a son who was born with brain damage. In it, Oe keeps coming back to the fact that despite the challenges, having a son with intellectual disability came to define his worldview and enabled his family to adapt in ways that readied them for other challenges.

“Twenty-five years ago, my first son [Hikari] was born with brain damage. This was a blow, to say the least; and yet, as a writer, I must acknowledge the fact that the central theme of my work, throughout much of my career, has been the way my family has managed to live with this handicapped child. Indeed, I would have to admit that the very ideas that I hold about this society and the world at large—my thoughts, even, about whatever there might be that transcends our limited reality—are based on and learned through living with him.”

And further on: “On a more personal level, I can imagine a very concrete example of what happens to a society that shuts out its disabled by asking myself how we ourselves—[the Oe family]—would have turned out if we hadn’t made Hikari an indispensable part of our family. I imagine a cheerless house where cold drafts blow through the gaps left by his absence; and, after his exclusion, a family whose bonds grow weaker and weaker. In our case, I know it was only by virtue of having included Hikari in the family that we actually managed to weather our various crises, such as my mother-in-law’s gradual mental decline.”


I guess I'm not sure what I think anymore.