Rude words from doctors and parents harm care

By Louise Kinross

In 2015, a team of Israeli researchers studied the impact of rude comments by another doctor on medical teams while they did a simulation of caring for a very sick premature baby.

The words, from an expert the participants were told was observing them, included that he was “not impressed with the quality of medicine in Israel” and that medical staff in Israel “wouldn’t last a week” in his NICU in the United States.

Twenty-four NICU teams participated and teams were randomly assigned to hear the expert’s rude comments or to hear his neutral comments. The teams that experienced the rude comments scored less well in their diagnosis of the baby’s problems and in how they performed tasks like resuscitation and asking for the right lab tests. They were rated by two judges. “Rudeness exposure [by a medical superior] can adversely affect the cognitive functions required for effective diagnostic and medical procedural performance,” the researchers conclude, and may be a source of devastating medical error.

In a new study published in Pediatrics this month, the same scientists look at what happens when an actress, playing the role of the baby’s parent in a simulation, belittles the medical team. In this study, four Israeli medical teams performed five emergency scenarios. Three of the teams were confronted by a mother who accused them of misdiagnosing her child, threatened to move the child to another hospital, and said: ‘I knew we should have gone to a better hospital where they don’t practice Third World medicine!’ The control team was not exposed to rudeness.

Two teams were given a preventative intervention—one was a cognitive bias-changing game and the other a therapeutic writing exercise. The 20-minute computer game before the simulation showed angry and happy faces and provided feedback that made them less sensitive to negative emotions. The writing exercise involved having one team write about the rude event after it happened. The teams that experienced the rude comments from the mother scored less well on how they diagnosed the baby and intervened, as well as how their team shared information and workload. The researchers showed that the pre-simulation computer game reduced these negative effects on care, while the post-intervention writing exercise was ineffective.

BLOOM interviewed lead investigator Dr. Arik Riskin, a neonatologist at Bnai-Zion Medical Center in Haifa, Israel, by e-mail to learn more.

BLOOM: Why was the study about parent rudeness needed?

Arik Riskin: The study is important because it increases awareness that there are many factors related to human behaviour, relations and communication between [health workers] and between them and their patients or families. We are not robots, we are human beings with feelings, and we react to social situations and behaviours as do other humans. But, in the case of [health workers], the impact can be devastating, because we are dealing with patients, treatments and life-and-death decisions. The remedy starts from awareness and recognition that there may be a problem with this issue. Awareness is important for us as medical team members, but it’s also important to our patients and their families and to healthcare management authorities dealing with ways to decrease medical errors and improve care and patient safety.

BLOOM: How did you define rude behaviour?

Arik Riskin: Rudeness is defined as insensitive or disrespectful behaviour enacted by a person that displays a lack of regard for others. Rudeness should be regarded as a form of uncivil behaviour. Workplace rudeness may include insulting comments, denigration of a person’s work, spreading false rumours, social isolation and bad manners.  Rudeness, particularly with respect to speech, is necessarily confrontational at its core. What constitutes rude speech depends on the culture, the setting and the speaker’s social position in the culture. Rudeness is primarily concerned with violations of human dignity or respect.

BLOOM: What are common causes of rude parent behaviour in the NICU?

Arik Riskin: I would pay a fortune to find out the answer to this question. However, I’ll share with you some of our insights from our experience. Many times rude behaviour is a late response to an incident or some stress (and the NICU experience is very stressful) that the parents experienced before, sometimes even a few days or hours before.

The rudeness is not necessarily turned toward the [health worker] that was involved in that previous incident, and may be unrelated to the parent's infant or to the NICU or hospital. It can be some argument between the parents or in their larger family.

However, when it hits the physician or nurse out of the blue, they start thinking ‘What have I done wrong?’ This starts the process of rumination—thinking over and over ‘Why did I get this insult?,’ drains their cognitive resources and eventually can affect their ability to treat patients.

BLOOM: What were the main findings on rude parent behaviour?

Arik Riskin: Rudeness has robust, deleterious effects on the performance of medical teams.  Moreover, exposure to rudeness debilitated the [collaboration] recognized as essential for patient care and safety.

BLOOM: How does rudeness impair a medical team’s ability to provide good care?

Arik Riskin: Teams exposed to mild rudeness by the patient’s mother had diminished team performance with respect to outcome parameters relating to diagnosis and intervention, and process parameters including team information and workload sharing. These findings not only replicate our earlier findings demonstrating the [negative] effects of rudeness expressed by a senior colleague on individual medical performance, but extend them by demonstrating that similar effects are elicited by rudeness from other sources and are manifested at the team level.

In this study, we also demonstrated that these deleterious effects of rudeness are not restricted to individuals, but also to teams. This is important because—based on the assumption that teams can often overcome and compensate for individual performance limitations—medical work is increasingly structured around teams. Our findings demonstrate that when rudeness is present, the very collaborative processes that generally enable teams to outperform individuals may break down.

To the extent that rudeness impedes team helping and workload sharing, teams may not be able to deliver the heightened level of patient care that practitioners have come to expect from them.

BLOOM: Why was the computer game some teams played effective in reducing the negative effects of rudeness, while the writing exercise others did wasn’t?

Erik Raskin: Prior to the simulation, teams in the preventative cognitive-bias modification intervention engaged in a 20-minute computer game in which they looked at a series of morphing faces, were asked to move a cursor to indicate whether the emotion was more of anger or pleasure, and then received immediate feedback on their choice.

During this game, the computer determined the participant’s threshold to threat—that is, the angry faces—and then gave them feedback designed to raise this threshold and ‘immunize’ them from devoting substantial attention to minor threats.

Examination of the manipulation checks showed that those in the computer intervention viewed the mother as ruder than those who experienced the rude comments with no intervention.

As designed, the computer intervention ‘immunized’ participants’ medical and therapeutic performance and teamwork by shifting their attention away from the implicit threat posed by the mother, likely preserving cognitive resources for the tasks at hand. The computer intervention operated not so much by mitigating the appraisal of rudeness, but by making team members more resilient to it.

The teams who did the writing exercise worked on the simulation with rudeness first, and then went to a debriefing room where they were asked to write a paragraph or two about how they thought the mother of the infant felt when it seemed to her that the team was unsuccessful in treating the baby.

By the end of the day, those in the narrative group did not view the mother as ruder than controls. These results suggest that while writing about the experience from the mother’s perspective facilitated participants’ positive reappraisal of her rude behaviour, it failed to help them overcome the cognitive disruption caused by it.

BLOOM: Is there a danger in making health workers less emotionally responsive to families?

Erik Raskin: As mentioned in my answer above, the computer game didn’t make health workers less emotionally responsive. On the contrary, it just ‘immunized’ them, thus changing their focus and less disturbing them in their work.

BLOOM: Are there times when a parent questioning the care is appropriate?

Erik Raskin: Parents questioning the care is always appropriate. They have the right to ask questions. In my opinion we can use it as a means to help us do better, think again about the diagnosis, re-think treatments given and other options of treatment. Generally, this is a good interaction with parents, and many physicians and nurses, like me, see parents as our partners in the goal of giving the best treatment to their children, helping them survive and grow, and go home, as healthy and happy as possible.

There is a big difference between real questioning and seeking explanations in the best interest of your baby, and rude comments, insults and blaming of the physicians and nurses. [In the latter case], parents throw all their stress and frustration (because the infant was born prematurely and is very sick) on the medical team that is trying its best to save their infant, give life and treat as best as they can.

There is also the issue of timing. We allow parents in our NICU all day long, including in rounds, but parents must understand that we also need to treat, to do resuscitation and other procedures, and to look after other babies. So we are not all the time available to answer every question. They should be patient and understand that sometimes we simply don’t have time to talk to them immediately, and we’ll be happy to do so later when we have time.

So, please don’t start shouting at us, making rude remarks about how careless or less attentive we are. This makes us feel bad, makes us ruminate about ‘What have we done wrong?’ and drains our cognitive resources in a way that eventually hurts our performance or even causes us to do unintentional harm.

BLOOM: A media story about your study includes a quote from a doctor who says that outside the NICU, parent rudeness is often a legitimate reaction to poor care and system problems. Is it possible that this could also happen in the NICU?

Arik Riskin: Sorry, but I disagree with this statement. Rudeness is never a legitimate reaction—not in the NICU, not outside the NICU and not anywhere else. This is not a nice way to express your concerns. It is a totally unacceptable form of communication among people in general. It is an act of incivility that is no less harmful than aggressiveness or bullying. 

Parents should and can express their concerns about treatment, and if they think it’s poor care, they should tell this to the medical team. If this doesn’t help, they can talk to their superiors, and if this doesn’t help, they can ask to go and get the treatment in another facility. The problem is that many times it’s not poor care, but mainly frustration on behalf of the parents because their infant is really sick and doing badly despite all the treatments given to him or her.

But, I’m ready to hear this from parents, too, and I’m not ashamed to consult another expert and seek another opinion, as long as it is for the best care of my patients. Unfortunately, many times nowadays parents are confused by a general atmosphere that is very criticizing [about] everything. This is reinforced by the media ‘looking for headline news,’ attorneys looking for law suits, and family members (who think they are supporting the parents by questioning everything, but cause the parents lots of confusion and eventually mistrust in the care their baby gets.

Parents need to have some trust and faith in the team taking care of their baby in order not to lose hope, which is so important for them, and us too. Parents should ask questions, should learn and read about their infant’s condition, and should inquire about the diagnosis and possible other treatments. But at a certain [point] they need to have some trust and confidence in us as medical team members, coming days and nights to do our best for their babies.

BLOOM: Are there differences in how parent rudeness vs medical staff rudeness impacts medical care?

Arik Riskin: Both are as bad, having devastating effects on individual team members and on medical teams’ performance as a whole. We haven’t compared both sources at the same time in the same settings, so I can’t guarantee which is worst. But based on our studies and the studies of Professor Erez and colleagues on rudeness in other settings, both have very bad influences on the [person targeted] and on those who witness it.

BLOOM: What advice would you give parents?

Arik Riskin: Try to be as patient and polite as possible. We understand that you are in real [distress], and are there for you. We even understand when you are not so nice to us because you are sad and worried. But, being sad or worried and even frustrated doesn’t necessarily need to make you rude to us.

Being rude simply doesn’t help and might actually cause the opposite by distracting us and disturbing us from doing our best. 

I have worked with many parents over the years and those that had a positive attitude to all that was happening, despite all the stress and hard times they were going through, coped much better than other parents. I believe that this attitude gave them hope, which is so important in tough times. I think they may have also been more open to the support we are willing and trying as best as we can to give to all the parents of the sick infants and preemies we’re taking care of.

BLOOM: What measures should hospitals put in place to try to reduce rudeness by senior medical staff or among medical peers?

Arik Riskin: Awareness is also important among team members, educating us to treat each other with dignity and respect. The days when a senior physician or charge nurse could be rude to a resident or trainee are over…not because it’s impolite and unfriendly, but because it [endangers] our patients.

By highlighting the impact that adverse social contexts may have on team-level [collaboration], our findings provide the foundation for a wide range of interventions aimed at enhancing patient safety. Our results suggest that instituting protocols and procedures aimed at bolstering the defenses of medical teams to the cognitive distraction and drain elicited by rudeness can help mitigate the devastating consequences of these events, even when they can’t be prevented.

BLOOM: Do you feel there’s a role for narrative writing and reflection, even though the intervention used in your study didn’t show a benefit?

Arik Riskin: Yes, I would definitely not quit this possible route of interventions, especially not reflection, which is an excellent learning tool for medical teams.

BLOOM: Have you considered doing a study to look at the impact of rudeness by medical teams on parents of premature babies? Some parents have traumatic experiences related to being talked to in a callous or dismissive way, or in hearing their child being talked about in a degrading or disrespectful way.

Arik Riskin: This is an important subject, which I’m sorry to say still exists as a problem. I haven’t done research on it, but I know that many others have studied this important aspect of communication.

Teaching physicians and other health workers to talk nicely, gently and politely with parents is no less important than the medical treatment we provide. I recall my first lesson in neonatology as a resident. The director of our NICU then, the late Dr. Berger, taught me. We went to talk to a mother after a delivery. The mother was very stressed and frustrated even though her baby was improving. Then Dr. Berger sat with me and told me her insights about how mothers feel after delivery, and how we need to talk to them and support them. She told me this was my first lesson in pediatrics and in neonatology—How to talk to a mother—and it was more important than any other lesson I’d learn.

I carry this important lesson with me and pass it over to my students, residents and fellows. I still find talking to parents the most challenging, but also the most rewarding, part of my work. I look at them as our teammates in the long, long [journey] we have to go together to make their infant survive and to be as healthy and happy as possible.

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For parents of preemies, rehab is a confusing 'new world'

By Louise Kinross

Children’s rehab is “a whole new world” fraught with stress and confusion for parents of preemies who are moving on from neonatal intensive care, according to new Holland Bloorview research.

Based on interviews with 18 parents of preterm children with cerebral palsy, lead investigator Marilyn Ballantyne found parents commonly feel lost, unsure of what to expect or what services to ask for, and vulnerable.

The goal of the research is to identify how to best support parents during this process.

Parent suggestions for ways to improve the transition included recognizing the child as a whole, rather than separate parts of a diagnosis; better communicating what to expect; providing consistent information on a child’s diagnosis and appropriate services; and connecting parents to consistent health providers, including one that plays a navigator role over the long-term, and other parents of children with disabilities who can provide support.

BLOOM interviewed Kyoko, a Holland Bloorview family leader who worked with the research team to develop the interview questions for parents. We wanted to hear about her experience as the mom of twin boys born at 30 weeks gestation almost 14 years ago in Japan. At the time, Kyoko had three other children under the age of 10 at home.

BLOOM: Tell us about your twins.

Kyoko: They spent 99 days in the NICU, and one of the boys had health concerns. There were minor ups and downs with breathing, fluid intake, bowel movements and oxygen level in the blood, but they were monitored by machines. The nursing and medical staff were very supportive. I was anxious, to some extent, but every time I went to see the boys the staff gave me hope. There was a culture of acceptance created in the way the nurses practised. They were always professional, loving, calm and quiet. If a monitor went off due to a lack of oxygen, they would smile and gently pat my son on the back and say 'You forgot to breathe.'

We were only allowed to visit between 1 p.m. and 9, but that was okay because I had older children at home. All of the doctor visits or special appointments were done in the morning. The nurses kept a daily journal in a scrapbook for each patient documenting the services they received and how much milk they drank, how long they slept, and any activities. It was accompanied with photographs. It was a precious record and it would be ready for us when we got there to catch up.

BLOOM: What were you told in terms of their prognosis?

Kyoko: The day of discharge the chief pediatrician explained that they might have possible delays in speech, hearing, gross and fine-motor skills, because of their birth, and it had to be monitored. But then he said "Raise them as perfectly healthy children." I had previous experience raising children, so I thought 'okay.'

BLOOM: What was it like when they came home?

Kyoko: Full of surprises. We didn't anticipate how hard it would be after they came home, and the number of serious emergencies they would have. They developed life-threatening respiratory problems when they picked up the common cold from my other children.

The pediatrician had given us a brief explanation that they might have delays in development. In our case, breathing was the major issue. We weren't told what might happen, or what kind of therapy would be good for them, or which doctor to see for breathing.

I wish we'd had more information, but it was probably hard for the doctors to predict how the boys would be with three older children bringing home colds. One of our older children's classmates was battling a serious illness and her mother was very empathetic and helpful and played a navigator role for me. She helped with where to go and which practitioner to see and what needs to be done. She suggested the boys should be seen at a different hospital that had a 24-hour emergency unit.

BLOOM: How did you manage all of this with two infants and your older children?

Kyoko: The period between the NICU and rehab was very, very stressful. I was juggling three to four hospitals and running from place to place. We were dealing with different health issues as well as all of the regular checkups. The hospitals were spread out and the taxi bills were enormous (though still better than facing parking problems).

It was a maze of medical services and not knowing what to get and where. When I look back, there was a disconnect in that period between the NICU and the rehab hospital. You had to do everything by yourself and find the specialists. All of the diagnoses and care and services provided in the NICU had nothing to do with the problems the twins developed afterwards. In a way we were lost and thinking 'why is this happening?'

BLOOM: At what point did you suspect that one of your boys might have a disability?

Kyoko: We were back at the hospital often for treatment for common colds, and at one of those visits, my son was diagnosed.

BLOOM: What were you told?

Kyoko: It was very straightforward. He has cerebral palsy and he has limited hand and leg movement. But he could hear and had eye contact and was able to communicate. I couldn't really understand fully what kind of disability he would develop. I asked 'Will my son walk?' The doctor said the goal of therapy is to maintain what he has and to get the most out of what he has. For me, the word 'maintain' stuck in my mind and as I look back I see how this word helped me to balance between reality and ideals.

That word 'maintain' gave me the sense of a process, that it's not the goal of being able to walk like an able-bodied person or being cured, that there wouldn't be a drastic change. 'Maintain' doesn't imply an ideal that a child has to reach. That's why I liked your article 'The Enough House.' For some kids, enough is enough. It was a very simple message of 'don't lose what he has and then help him to grow'. I was allowed to see him as an individual and focus on him and what kind of possibilities he's blessed with and we were yet to find.

BLOOM: Did you then go to rehab services?

Kyoko: Yes, we went to a rehab service for a year before we moved to Canada. My son received occupational therapy and physical therapy for 1 1/2 hours each week and it was conducted in a big room where I could sit and chat with other parents and that was comforting to me. One of the parents recommended that I take my son to see an energy therapist and he helped my son tremendously in terms of speech. But we really just went to rehab for therapy. There was no cafeteria, no playground, no Ronald McDonald playroom. No mental support, or support for siblings.

BLOOM: In Marilyn's research, parents said they wished they'd been given more information about what to expect. Was this an issue?

Kyoko: I wish we'd had more information about spasticity. He was able to stand up against the wall with both feet flat on the floor when he was 18 to 24 months and we were waiting for the moment when he'd take the first step, but he never did. There was a lot of frustration about why he tends to fall or why he can't do this or that. I guess even though the doctor said the goal is to maintain, somewhere in my mind I was anticipating the next step and wouldn't it be nice if he can walk.

It's interesting, but it just came out of my mind that it seems like there are two pieces of me: One is accepting and another one is thinking 'maybe.' Because we were never clearly given a prognosis, a part of me was thinking that maybe something will change. I wish we'd understood more about spasticity and how it affects his overall movement. We were never told that it was something that wouldn't dissipate. We were going through rigorous therapy and exercise and stretching in the hopes it would help, but this is the mystery of spasticity.

BLOOM: You then came to Canada and your kids were in our Play and Learn nursery and then our integrated kindergarten. When you think about new parents or preemies transitioning to Holland Bloorview, is there any information we don't currently provide that would be helpful?

Kyoko: I think it would be helpful for the parents to be given a list of every therapy that is available, not just here, but private PT and OT and speech providers in the community. Because of the wait to get services, and because therapy is three months on and three months off, it would be good to know what other services are available.

BLOOM: What about connections with other parents?

Kyoko: I was lucky that in Japan a mother helped me tremendously and then when we moved to Canada, a mom in our neighbourhood whose daughter had CP also helped me. Then, much later, when my son was graduating from the Bloorview school, the physiotherapist suggested I speak with Dawn Lunan, who was a parent liaison at the hospital, and that was helpful.

I'm not sure what's most helpful for people. Whether you bring a group of parents together to talk, or whether you have a parent reach out to them individually one on one. I go to the Parent Talk group for cerebral palsy. In February we spoke about how in the autism group there's a very strong network. But for some reason, the parent support is still very weak in the CP group. There were only five parents at the session. I wondered why more new parents weren't coming out to these sessions.

BLOOM: I think sometimes parents early on are overwhelmed.

Kyoko: Yes, I understand that feeling of 'you want more information' and 'you don't want more information.' For me, I like to meet with other people who are going through different stages of life. It helps prepare me for what to expect with my son.

BLOOM: Is there something you feel we could do better at Holland Bloorview?

Kyoko: Holland Bloorview already offers many workshops and presentations on diverse topics related to childhood disabilities.

Family support I think can be done better. For example, for the siblings. We're all supportive and trying our best, but to be included in the care is the key. I brought the older kids to the swimming classes downstairs so they could get familiar with therapy and disability in general. I think it would be nice to have more activities for families where you can bring all of your children.

BLOOM: What about respite?

Kyoko: We didn't think about having respite early on. We were very close to each other. We preferred to go out and do something as a family.

BLOOM: How is your son doing now?

Kyoko: In some areas we've been very successful in bringing him up to the surface and he's become truly him: funny, creative, compassionate, a good human being with limited physical abilities. He is able to type his school assignments and play video games with a regular controller. He uses a manual and power wheelchair and is in a regular school program.

BLOOM: What advice would you give other parents?

Kyoko: Look at your child and accept him or her as he or she is, and bring up all of their potential by using therapy and social connections. And even if your child doesn't achieve all of these things, still, she is she and he is he, and there are moments of joy.

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