Why silence is golden after doctors express empathy

By Louise Kinross

Every day, doctors in children’s hospitals meet with parents to talk about life and death medical decisions. It may be whether to surgically create a hole in a child’s windpipe to place a breathing tube, whether to remove a life-sustaining ventilator, or whether to proceed with a high-risk medical procedures, such as a third bone marrow transplant.

Studies show that when families feel their emotions are heard and understood by doctors, they’re more likely to share information that’s critical to the best care.

But what features of a conversation effectively transmit a message of empathy?

A fascinating study in JAMA Network Open looked at the transcripts of 68 recorded care conferences about high-stakes medical decisions at Children’s National hospital in Washington, D.C.

Researchers wanted to evaluate how doctors communicated that they had heard and understood parents', or other family members', emotions.

“The biggest surprise was the 18-fold increase in moving the conversation along and getting more information on a family’s fears, hopes and values just by using ‘the pause’ after expressing empathy,” says lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children’s National.

While doctors in the study recognized and responded to emotion in families 74 per cent of the time, in almost 40 per cent of cases they didn’t then pause—giving families a chance to respond. Instead, they reverted to medical jargon.

“I always thought the pause was powerful, but I didn’t expect it to have that magnitude of effect,” Dr. October says. “It supports the thought process I had going into the study, which was that families who have their emotions responded to are more likely to share additional and new information. Language really does matter.”

To categorize empathetic words in the transcripts, researchers used the NURSE pneumonic on how to communicate with seriously ill patients and their families: naming the emotion, showing understanding, being respectful, giving support and exploring feelings.

Most often doctors did respond to emotional cues from families, but too often they immediately plunged back into clinical talk, followed their kind words with ‘but,’ or were interrupted by another doctor who provided more medical data.

BLOOM interviewed Dr. October about the study.

BLOOM: Why was there a need for this study?

Tessie October: I do both palliative- and critical-care medicine and I find that by straddling both, I have a unique understanding of the parent and family and their role in the care of their child. In the ICU, we don’t always respond to family’s emotions in the way families need to be supported. We know the families need medical information to make informed decisions, but we also know these are heavy, emotionally-laden decisions.

I find, anecdotally and in the literature, that we lean more heavily toward the medical information without the emotional support, and we need a better balance. In children’s hospitals, we do have other support folks like social workers or our palliative-care team or our chaplain, and physicians rely on them to provide the emotional support. But that’s not what our families want. Families want emotional support from their doctors.

BLOOM: How did you define empathy?

Tessie October: We defined it, looking at the Webster's dictionary, as being aware of the feelings and emotions of the families, and responding to that emotion with care and love and compassion.

BLOOM: What were the key findings?

Tessie October: The most important finding was that silence matters. Physicians in general are trying to be empathetic—they’re responding to the emotional cues of families—but they don’t realize that they’re sometimes burying that response in medical information, and when they bury an empathetic statement, families don’t hear it.

So giving an empathetic statement and pausing is what allows the family to hear. But more than that, after a pause, the family was more likely to talk about their worries, hopes and values, and these are the things we need to make some of these decisions. It wasn’t just that doctors responded and families felt better. It was that the pause moved the conversation along.

BLOOM: Your study notes that doctors sometimes linked a kind statement with ‘but,’ and this wasn’t helpful. Can you explain?

Tessie October: 'But' is a conjunction that indicates to the family that the next clause will contradict the previous one. So a doctor might say ‘Gosh, this must be really hard for you. I can’t imagine how hard this is—but—we do need to start making some decisions.’ Parents no longer hear the first part, and all they hear is: ‘You guys need to move this along.’

This happens pretty frequently. As much as doctors are trying to be compassionate, we have a purpose and an agenda in the meeting, and we want to get to it.

BLOOM: I assume that time pressures are a factor?

Tessie October: We’re trying to change the way we think about the family meeting. In my research on communication techniques and training, we find that when you slow down and do less of the talking, you get more information, and the meeting is shorter. You spend less time, you get less conflict, and you respond to the family’s emotions. As a result, they’re able to collect themselves and are ready to hear more information. Think about when you’re in an emotionally distraught state. Until you come down on the emotion, you can’t take in any information. Until you respond to family emotions, they can’t hear medical information properly.

BLOOM: Why do doctors often bury compassionate statements in medical talk?

Tessie October: It’s what’s most comfortable. It’s how we talk with each other, and how you’re evaluated in medicine. It’s the language that physicians know. It’s much harder to be in an emotional space and sit with a family in silence, or make statements that you know will hurt.

It’s harder to sit with a family that’s crying than to revert back to the stuff we’re comfortable with—talking about the kidney or lungs or other medical parts. It’s an avoidance behaviour that happens when you’re uncomfortable. We need to learn the skills that are necessary to respond to emotions, without feeling guilty. Having those tools in our tool box can be helpful.

BLOOM: How do we prepare doctors to do this emotional work? You note in the study that when a parent is distressed, it’s often difficult for doctors to pause after conveying empathy. Don’t they need coaching on how to do this?

Tessie October: This is the hard work we’re trying to do. We don’t get this anywhere in our critical-care training. In palliative-care training, we do spend a lot of time talking about emotions and how to connect with families. Our procedures in palliative care include responding to family’s emotions and navigating care conversations and meeting as a team. But for a lot of ICU doctors—and other doctors beyond that—this is not part of their training.

We don’t think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube. I’m trying to change the framework of how we think about these conversations. If you think about how we even evaluate people who are appropriate for medical school, it’s not about how they communicate with people. We’ve decided that technical skills and the science background is enough to be a good doctor.

What we’re finding is that doctors who have better relationships with families are doctors who are less likely to be sued, who find more meaning in their work, and who are less likely to burn out.

BLOOM: Don’t doctors also need to regularly express their own emotions to the work they do? We did a narrative group with our inpatient nurses here, and one of the findings was that prior to the group, nurses felt they were alone in experiencing work emotions like grief, regret and guilt. During the intervention they would say things like “I thought I was the only one.” We found they benefited from hearing other nurses tell similar stories to their own, which normalized their feelings.

Tessie October: We need to do more work that allows people to have a space to unpack these emotions that you describe in your narrative work. When we don’t do this emotional work with staff, we end up with burnout. There are some things hospitals are doing, like Schwartz Rounds. We also have debrief sessions with our chaplain after an emotionally challenging death of a child.

Part of it, truthfully, is that there’s a protective mechanism we invoke to be able to do the work we do. We try to stay a little bit distant. When a child dies, if you’re the ICU attending, you still have 40 other children who are expecting you to be on your game.

We need to normalize the fact that we have these emotions. Medical staff experience repeated work traumas. We need to make a safe environment for people to be able to emote, and talk about these things. It’s not institutionalized until every staff member has their own process that they can use to do this work. This is an area we need to address as a field.

BLOOM: What do you hope other intensive care units take from the study?

Tessie October: That conversation matters. And that sometimes just slowing down and pausing can make a real difference in the family’s ability to hear and understand the information you’re giving. The motivation may be to rush through certain things, and we have to remind ourselves that these are emotional, life-changing decisions. Responding to emotions is equal in importance to providing technical, medical information.

BLOOM: To some degree, isn’t empathy subjective? Isn’t it possible that one parent would find a statement helpful, and another parent might find it hollow? Was there thought given to studying which words and phrases parents find most compassionate?

Tessie October: That would be a very interesting study to do. We didn’t study that in particular. I think you’re right—some families respond to different words. Our goal is to increase the options that are in the doctors’ tool box, so if they try something and it doesn’t work, they can try something else. What I do in my meetings is I let the family talk. I let them start the meeting and get off their chest what they’re really worried about and, and based on the language they use, they give me a lot of clues.

It’s being present, and being aware, and listening to those clues. One thing we want to do is help doctors recognize statements as emotional. For example, if a family says “There’s got to be something more you can do,” I’m trying to help staff hear that as an emotional statement, instead of as a cognitive statement.

Often, the family is not asking ‘What’s the next phase 1 therapy available for my child?’ They’re saying ‘I can’t believe we’re at this place. I can’t imagine that we don’t have any other treatment for my child.’

BLOOM: Yes, it sounds like the parent is feeling powerless to protect their child. Was any thought given to connecting parents who are going through similar situations? In one of the statements listed in your study, a doctor says ‘I completely understand.’ But how is that possible, unless they’ve had a child in the same situation? I’m wondering if other parents—or a parent in a staff role—could provide additional support?

Tessie October: I don’t know that that’s been tested. I know some hospitals are testing parent navigators, where a parent is on staff to provide continuity for families. Part of the problem is that parents often participate in meetings with different providers who give them different messages. A lot of times these meetings happen impromptu. We do offer to have families speak to other families going through similar things, especially around heavy decisions such as tracheotomy placement. We’ve also created resources in terms of videos that are parents talking to parents.

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Sharing work 'wounds' helps nurses prioritize their own self-care

By Louise Kinross

A six week narrative group for inpatient nurses at Holland Bloorview increased nurses' empathy for their own emotional reactions to working with children after painful bone surgeries or life changing trauma, and their families, according to a study published in The Journal of Pediatric Nursing last month.

BLOOM reported earlier on how the narrative training increased empathy for patients and families and for the nursing team.

This piece looks at how the six, 90-minute sessions of writing, drawing and talking about their own nursing stories elicited greater self-compassion in nurses. Participants were able to share work-related emotional wounds they had sometimes carried for decades.

Knowing they were not alone in experiencing emotions like grief and regret allowed them to let go of what they called medicine's "myth of perfection," and to recognize that to provide the best care, they must first care for their emotional and physical wellbeing.

Each session began with reading of a patient story, poem or comic that addressed common themes in children's rehab such as 'Seeing from different points of view; 'Obstacles to empathy,' and 'Making room for hope.'

Facilitators led a discussion of the reading, then gave participants a related writing or drawing prompt. For example, 'In a three-panel comic, tell the story of a patient through their parents' eyes.' Participants then discussed and shared their work.

In the study, empathy is defined as "The capacity to imagine the situation of each patient and their family—understanding their feelings and perspective, and responding in ways that make patients feel heard and cared for."

Participants worked with children hospitalized at Holland Bloorview following painful bone surgeries or life-changing trauma, such as traumatic brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group.

Prior to the intervention, nurses said little about self-empathy, and instead spoke about efforts to control or hide emotions like grief, regret or guilt. "I'm still learning and trying to control my emotions," said one. "If I can just not...freak out right away." They also expressed an intense desire to avoid failure. "I need to learn to...try not to take it personally, but you do. Because you feel like it's your fault, even though it's not."

Their efforts to cope with stress were often reactive, and didn't involve seeking out nursing peers. For example, "I would go myself and cry in one of the rooms."

In addition, they regularly described struggling to absorb difficult or abusive behaviours in patients, parents, and co-workers. "You want to be able to stand up for yourself, but it's hard to figure out that line with family-centred care," said one. "Professionally too, right?"

After the narrative group, many nurses said it was the first time in their career they'd been able to talk about emotional wounds from traumatic work incidents. "It happened like 17 years ago," said one. "You don't realize sometimes that you haven't totally resolved something." And: "[The intervention was] like therapy on a whole different kind of level."

Hearing that all nurses make mistakes and experience challenging emotions led them to let go of the pretense of perfection, and to be more comfortable with ambiguity. "Not being so scared to tell them I don't know... because we don't have all the answers," is how one described the change.

After the group, nurses stressed the need to proactively take care of themselves. "It means not overworking your body, like not working more hours than you're physically capable of, making sure you take your breaks at work, making sure you've made time to do fun things outside of work."

They were less likely to fixate on mistakes, acknowledging the need for humility and self-compassion. "Not being so upset with myself when things don't go right," said one. "[The intervention] confirmed that it's okay if I don't know, because not everyone knows everything either," said another. "I can see how that shift happened throughout the weeks."

After the group, participants were more likely to reflect creatively on mistakes and figure out how to do something differently the next time, and to approach, rather than avoid, emotionally charged family situations. 

One theme that only surfaced after the group was pride in nursing. "The once-a-week [intervention] really brings you back to the purpose of my role..." said one. Sharing stories that revealed the profound influence nurses have on patients and families boosted their confidence. "I felt good about myself being a nurse being part of the group...because it gives me in-depth thinking of... how much we are doing right, like in terms of client care."

Many were reminded of why they became nurses in the first place. "I'm impacting people's lives," said one. "I think we forget how much we do here. Just talking about it, listening to the other staff's experiences here and elsewhere, it makes you realize how important your role is." 

This study was funded by a Catalyst Grant from the Bloorview Research Institute. The lead investigator was Keith Adamson, then collaborative practice director at Holland Bloorview. Also on the team was Sonia Sengsavang, a PhD candidate in developmental psychology from Laurier University and Michelle Balkaran, a nurse who is now an interim operations manager at Holland Bloorview. The three facilitators were Andrea Charise and Shelley Wall, both professors at the University of Toronto, and BLOOM editor Louise Kinross, who is also the parent of a son who has been an inpatient at Holland Bloorview. 

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Telling clinician and patient stories increases empathy in nurses

By Louise Kinross 

A six-week narrative group for inpatient nurses at Holland Bloorview promoted greater empathy for patients and families, for each other, and for the nurses themselves, according to a study published in The Journal of Pediatric Nursing last month.

I was a facilitator on this project, which was led by Keith Adamson, then collaborative practice leader at Holland Bloorview. The other facilitators were Andrea Charise (photo centre left), who directs an undergraduate health humanities program at the University of Toronto, and Shelley Wall, a medical illustrator and assistant professor in Biomedical Communications at U of T. Sonia Sengsavang (photo right), a PhD candidate in developmental psychology, was research assistant and Michelle Balkaran (left), a nurse and now an interim operations manager here, was part of the research team.

I will write pieces on each of three areas where the group was shown to improve empathy. The first was empathy for patients and families.

Each 90-minute session began with reading of a patient story, poem or comic that addressed common themes in children’s rehab such as ‘Seeing from different points of view;’ ‘Obstacles to empathy;’ and ‘Making room for hope.’

Facilitators led a discussion of the reading, then gave participants a related writing or drawing prompt. For example, ‘Write about a time that you received care’ or ‘In a three-panel comic, tell the story of a patient through their parents’ eyes.’ Participants then shared and discussed their work.

In the study, empathy is described as “The capacity to imagine the situation of each patient and their family—understanding their feelings and perspective, and responding in ways that make patients feel heard and cared for…” 

Participants, from each of Holland Bloorview's inpatient units, worked with children hospitalized following painful bone surgeries or life-changing trauma, such as brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group. 

Prior to the group, nurses expressed a desire to understand the family’s perspective, but often in the jargon of patient and family-centred care, the study found. For example, they “partner” with the family, and “Think of yourself being in their shoes,” but don’t give specific examples.

After the intervention, participants described a new understanding that every family has a unique backstory—the complex, often painful experiences that occur before and during the current care episode. This backstory guides concrete ways to express empathy, through kindness, listening, being aware, flexible and patient, trying not to judge, and giving the family the benefit of the doubt.

“These stories helped me think, Okay, this is a young girl,” one nurse said. “She misses her mom. Let’s just take five minutes.” Another said: “trying not to be so quick to judge things and to listen better.” And another: “On Tuesday when I was doing a port needle with a patient who has cancer…I [thought], ‘oh my goodness they are sick for a long time and it seems, like never-ending’…that insight that I got from the comic…it’s like ‘Yea, this must be really hard in their life.’”

Along with this new recognition of the complexity and fragility of families comes the understanding that nurses’ words and actions have tremendous power to help or harm.

Prior to narrative training, participants described a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing emotional support. Given time pressures and the expectation to maintain professional detachment, they prioritized technical tasks over emotional support, describing the latter as “outside my nursing hat.”

After the narrative group, the nurses elevate compassion, listening, being flexible and providing a safe space to families, as being on par with direct nursing tasks. For example, “Yes, we do the technical stuff but we feel like we’re so much more the emotion, the support, as well,” one said. And: “Really taking that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.”

Nurses also reported being more likely to share personal information if they felt it would help them connect with families on a human level. “Sometimes telling [patients/families] something about your own life may put them at ease or help them relate better to the situation they’re in.”

The researchers coined the phrase moral empathic distress (MED) to describe a new, emerging concept in rehab nursing. “MED can be considered an internal state associated with nurses’ feelings of profound helplessness, which emerges when nursing interventions are unlikely to alleviate a pediatric patient’s physical pain or chronic condition,” they wrote. This was heightened in rehab because clinicians develop relationships with children and families over months to years. Pre-intervention, nurses described this dilemma: “It’s more like picking up your own child, right?” said one participant. “So when we see suffering it’s more disturbing.”

After narrative training, participants were more likely to recognize that when there is no medical solution, their emotional presence with patients and families was invaluable. “Maybe there’s nothing more we can do, but… what I’ve learned is just to be present for the family and be their support,” said one. “And to hold their hand and to tell them, ‘Cry and be mad, because that is normal—you’re going to grieve.’”

Through storytelling, participants learned that their peers all experience work-related emotions like regret, grief and helplessness. Knowing that they were not alone in these emotions helped them cope. “One of the other [nurses]…was reading her piece and taking about how her patient was in pain and she was trying to help and it’s not helping,” one participant said. “And in the intervention she’s crying. You know, seeing how it’s not just me who gets really emotional and thinks about it—it’s other staff too.”

We'll explore how the narrative group increased empathy for participants' work peers and themselves in future posts.

This project was funded by a Catalyst Grant from the Bloorview Research Institute.

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The kindest doctor knows how it feels to be a patient

By Louise Kinross

Two experiences helped Dr. Brian Goldman understand how it felt to be on the receiving end of care, and led to his “journey to find kindness around the world, and to see if I could rediscover it within myself.”

The emergency room doctor was speaking to developmental pediatricians at Holland Bloorview today about his new book The Power of Kindness: Why Empathy Is Essential in Everyday Life.

Brian recalled a time in the ER when he snapped at a family. The family wanted their 68-year-old mother with an end-stage disease admitted, and repeatedly asked in the ER if he’d made the referral, which he had.

Weeks later, after the woman died, her husband wrote Brian a letter “accusing me of being unkind to the patient, family and him,” he said. The husband asked to meet Brian “so we can find out if there’s still a human being lurking under all that brusqueness.” He met with the family and learned about who the woman was “as a mother, partner and worker. At the end, we all had a good cry.”

The other experience that prompted a greater understanding of patients was caring for his own father, who developed congestive heart failure after caring for his mother with Alzheimer’s.

After working a night shift, Brian learned that his father was having bad chest pains. By the time he got to his dad, had him admitted to hospital and got him settled that night, Brian had been up for 40 hours. He kissed his father on the forehead, told him he loved him for the first time, and went home to collapse.

His father died that night. It was back at the hospital, when an internist began to awkwardly explain his death, sensing that Brian might attack him, that Brian said “I understood what the other family was feeling. Health-care providers who have the greatest grasp on what it’s like to be patients have been patients.” What Brian said to the internist was “Thank you very much for looking after Dad.”

Brian noted the difference between sympathy—a somewhat detached gesture of concern when you don’t understand what someone’s feeling—and empathy, which “is the ability to imagine what it would be like to be the other person.”

Affective empathy happens when you feel what the other person is feeling—kind of like catching a contagious emotion, he said. For example, an orthopedic surgeon might feel exactly what a patient who has just undergone a knee replacement would feel. This is not helpful, he said.

Cognitive empathy, which is the ability to imagine someone’s perspective, is “what we want in abundance in health professionals.” Emotional concern is what drives us to take action to help.

Brian referenced a study that showed that empathy drops in medical students year over year, from their first to their fourth year.

He talked about the definition of kindness—“the quality of being friendly, generous and considerate,” and how it’s rooted in the old English word “cynde,” meaning kinship.

“We tend to ascribe kinder qualities to people who we identify as being us,” he said. But this tendency “can change on a dime,” he said, describing a simulation where an adult wears a motion capture suit and sees an avatar of him or herself as a child on a screen. The avatar appears as you “in another cultural group,” he said. If a second character that belongs to the same cultural group is introduced, “you will identify with them.” And if a third character belonging to your own cultural group appears, “you will say 'that is not me.' It’s that superficial,” he said, noting that humans and orangutans share 97.5 per cent of the same genome.

Brian said some medical cultures devalue empathy as a skill. “You’re either compassionate or you’re an excellent provider,” is the message, he said, “but it’s a false dichotomy.” He said medical students enter their program full of compassion “and it gets drummed out of them.”

Contributing factors include “a lack of focus on empathy as something to be prized and appreciated,” he said. He noted that’s while technology is wonderful when it allows clinicians to focus more on the patient, too often, staring at a screen while talking to a patient interferes with rapport. Specialization is a big impediment to kindness and empathy, he said, because people fall through the cracks when a doctor can say “That’s not my part of the body. I don’t deal in that.”

In the ER, time pressures work against kindness. Brian spoke of “the debilitating feeling of apologizing to everyone you’ve seen, eight or nine people in a row.” He noted that with a complex situation, a 10-minute interaction could balloon to 45 minutes.

Brian said adult health care is increasingly managing chronic disease, whereas many med students picture themselves treating acute disease. Burnout—exhaustion, alienation, withdrawal and apathy, “not caring”—is higher in medical students and residents than it used to be. “The higher the burnout, the lower the empathy.”

Brian said humans are hard-wired to be empathetic: newborns cry when their mother cries, and when a baby and mother interact, “the same parts of their brain light up.”

But in a complicated world of competing priorities “empathy is a choice. We’re not compelled to be empathetic,” he said.

Brian shared some personal stories of people with extraordinary empathy. One was Mark Wafer, who bought six Toronto Tim Horton’s stores. The first person Mark hired was a young man with Down syndrome who walked into a store looking for a job. What led Mark to take a chance on the young man was his own experience growing up deaf. “It wasn’t being deaf, it was being discounted, that was his engine of empathy,” Brian said.

We also heard the story of a Jewish girl whose family escaped Nazi Germany. Her father ran a home for the aged and the girl grew up there with its residents. She later became a psychologist and developed a method of validating the behaviours of people with late-stage dementia “as meaningful symbols of unfinished core personal issues,” Brian said.

“Long-buried feelings that are expressed verbally or in behaviour can be resolved when caregivers validate them.” he said. “These are meaningful gestures.” For example, when a patient speaks of their deceased grandfather, “don’t yank them back into the present,” he said, “or lie, or redirect them. Ask ‘What would you say to your grandfather?’” The agitation we often see in people with dementia is how they “work on deep trauma.”

Brian said that people who become health-care providers are “often burdened by more shame than others.”

Brian said we can use our own emotional despair to help others in distress, or embrace errors we’ve made to help those who have made terrible mistakes. “Share openly what you are ashamed of. Be mindful and live in the moment.”

Before sharing bad news, such as a patient’s death, Brian talked about his own practice of centring himself. Because he tends to ruminate on the negative, he said he takes a minute to picture himself watching a parade of floats going by. “This absurd idea of a parade of bad things going by” allows him to release them and “not take ownership of others’ distress.” That means he can be fully present for family members “and acknowledge what they feel. We need to give them permission to feel the way they do.”

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What New York Magazine got wrong about intellectual disability

By Louise Kinross

A fascinating piece came out in New York Magazine earlier this week called How Smart Do You Have To Be To Raise A Child?

It raises excellent questions about the rights of disabled parents, including those with intellectual disabilities, to care for their kids—noting that 37 American states make a disability reason enough to terminate those rights.

However, one statement in the piece never should have made its way past a fact-checker.

In talking about whether intellectually disabled women can raise their children, the author writes: “one of the signs of intellectual disability is a limited capacity for empathy.”

WHOA Nellie!

Halt!

Where on earth did that come from?

As someone who has a child with an intellectual disability, works at a hospital for children with disabilities and has been writing (and reading) in the field of parenting and disability for years, this struck me as false. Outrageously simplistic. And dangerous.

Lack of empathy is not a marker for intellectual disability.

But just to be sure I wasn’t confused myself, I reached out to a number of experts.

First I e-mailed Dick J. Sobsey, associate director of the JP Das Centre on Developmental and Learning Disabilities at the University of Alberta.

“A lack of empathy is NOT a general characteristic of intellectual disability and certainly not for someone with a mild intellectual disability,” Dick wrote. “Mothers’ ability to attach to their child and respond to their needs is affected by their own experience as children.

“Sadly, children with intellectual disabilities are much more likely to have grown up in institutional care or to have been abused and neglected. Institutional care, abuse and neglect are risk factors for difficulties with empathy—in women with and without intellectual disabilities.

“There is no reason to believe that an individual cannot be a satisfactory parent simply because of an intellectual disability.”

I then e-mailed Dr. Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital for Children in Boston. “People with intellectual disabilities do have the capacity, to varying degrees, to be empathetic,” he wrote. “To assume otherwise would be presumptive. If someone has a lack of empathy, it doesn’t necessarily mean that they have an intellectual disability. And if someone has an intellectual disability, it does not necessarily mean that they have a lack of empathy!” (that's his exclamation point)

Finally, I messaged Dan Habib, filmmaker in residence at the University of New Hampshire’s Institute on Disability. Dan is a member of the President’s Committee for People with Intellectual Disabilities.

“I agree with your critique,” he responded. “This is one of the more widely accepted definitions of intellectual disability. Nothing here implies lack of empathy.”

Dan is currently producing a documentary, out in 2017, called Intelligent Lives, about how the segregation of people with intellectual disabilities became the norm, and why it's slowly being dismantled. 

So please, New York Magazine, when writing about one of the most marginalized populations on the planet—please get your facts straight.

Photo above from New York Magazine. 

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Does disability make us human? Or is it a threat?

By Louise Kinross 

In the last couple of days three stories on social media jumped out because they portray such different, opposing, pictures of what disability means in our culture.

Last night CTV reported that Swiss genetic lab Genoma used a family photo of a child with Down syndrome belonging to a Canadian family in a building-size banner to promote their prenatal test for diagnosing Down syndrome in a fetus.

The photo was used without consent or knowledge of the Canadian family.

Genoma says it acquired the image legally through a stock photo company and is taking legal action against them.

It's both horrifying and not surprising.

Horrifying that a parent would find a beloved photo of their child in an ad suggesting that a child like her should be aborted. And not surprising in that a company is trying to illustrate in its ad the reason for, or 'benefit,' of their test.

What is surprising is that a company wouldn't think twice about purchasing a stock image of a living, breathing child and using it to promote public questioning of the worth of children like her.

It reminded me of when a Duke University researcher contacted me last year to let me know that my son's rare genetic deletion was now on the list of disorders identified by microarray analysis of a fetus’s DNA. I wrote about how that felt, a bit of a knock-out punch, here.

Earlier this week The New Family posted this story about two Canadian moms who set out to adopt with one request: they wanted a child with Down syndrome. This is how one of the moms, Holly Graham, explains it:

"Rewind 25 years to when I was a little girl. I had a best friend named Mandy who just happened to have Down syndrome. She was fun, loving, friendly and magical. I always knew Mandy was different, I didn’t know why, and it didn’t matter. I just knew that I loved every single thing about Mandy. One day I came home from school and proclaimed to my mom that I was going to have a baby just like Mandy one day!"

And now Holly and her partner Alex are the proud parents of Jaxson, age 1, who has Down syndrome.

On the one hand, you have an entire industry devoted to preventing the birth of a child with Down syndrome. And on the other, you have a couple who choose to parent a child with Down syndrome.

And finally, there was this piece published a couple of days ago, which I read this morning, about British anthropologists who suggest disability itself is what made us human from an evolutionary standpoint, promoting our social, empathetic, flexible natures. This line of thinking fits with the views of French geophysicist Xavier Pichon, who helped create the field of plate tectonics.

As Xavier told BLOOM in an interview: "What I discovered is that the major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care [over the long term] of those who have been affected by major suffering and handicaps. I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades]. This is most remarkable as these people were nomad, hunter-gatherers who lived in groups of 20 to 25 people at most."

So where does the truth lie?

Earlier this week my team met with Dr. Peter Rosenbaum, a former chief of medical staff here who heads up the CanChild Centre for Childhood Disability Research at McMaster University. Yesterday Peter, a developmental pediatrician and children's rehab researcher, was awarded Holland Bloorview's Medal of Excellence in Childhood Disability.

He noted that medicine has swung too far to a biomedical, science side focused on "cure," forgetting that the most important quality in a health professional is human "care."

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Schwartz Rounds uncover the heart of healthcare

By Louise Kinross

As a parent, how do you define compassionate care? Have you ever broken down when describing something troubling about your child and their care?

If so, what reaction from the clinician made you, as a parent, feel cared for?

Earlier this month Holland Bloorview was the first hospital in Canada to partner with Boston-based Schwartz Center for Compassionate Healthcare.

The Schwartz Center is a non-profit organization that’s developed the Schwartz Center Rounds to give hospital employees an opportunity to share the emotions they experience when working with patients and families in the most challenging situations. The goal is to bring the humanity back to healthcare. More than 375 health facilities in the U.S. and about 100 in the U.K. are conducting Schwartz Center Rounds. Caregivers report that the program increases their empathy for patients and families and better prepares them to meet patients’ needs; improves teamwork; and decreases stress and isolation.

Non-identifying patient cases are presented and caregivers share their experiences confidentially.

At Holland Bloorview’s first Schwartz Center Rounds session, staff noted that their training hadn’t prepared them for some of the painful situations they face in supporting parents whose children have experienced life-changing trauma.

“How do you maintain your emotional composure?” asked one clinician. “Do you maintain your emotional composure? And why do I feel that I have to do that?”

Has a professional caregiver demonstrated compassion in a way that you found helpful? Please share your stories.

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