‘Please call my baby by her name…’

Authors

  • Amy Keir

    Corresponding author
    1. Division of Neonatology, Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
    • Correspondence

      Amy Keir, MBBS MPH FRACP, Neonatal Fellow, Division of Neonatology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada

      Tel: +1 (416) 813-1500 |

      Fax: +1 (416) 813-5245 |

      E-mail: amy.keir@sickkids.ca

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This was the advice given to a group of young physicians, myself included, by two parents who had previously had children in the neonatal intensive care unit (NICU). They were facilitating a session on communication in the NICU as part of a formal teaching programme for Neonatal–Perinatal Medicine fellows.

Their requests were for the most basic of communication – ‘Call my baby by her name’, ‘Do not call them a boy when they are a girl’ and ‘Make eye contact when you speak with us’. They related that when their children were in the NICU, they hungered for contact from the medical staff and were grateful when they received it. I was astounded that these two strong and articulate women needed to ask us to provide what I consider the bare minimum of communication between parent and physician. They were almost apologetic in the way they asked – ‘We know you are so busy and have many important things to do, much more important than speaking with us, so we can see how it can be hard…. but if you could manage to speak with families, maybe say, once a week?’

I would argue that communication is one of the most important parts of being a physician. It represents a fundamental domain of medical professionalism. In the NICU, however, sometimes we forget this as we get caught up with multiple demands on our time. As inpatient medical care becomes increasingly more complex and intense with higher turnover of patients, residents, fellows and attending physicians' [1] barriers to effective communication will only increase.

A few years ago, I saw a senior neonatologist speak with a mother in the NICU. She was in tears as he left. I went up to her, and she told me ‘I know it is not what he said but I think he wants to kill my baby’. What had actually happened was that the physician had spoken about whether or not to resuscitate if her baby were to become acutely ill again but what his mother had heard was something completely different.

On another occasion, not that long ago, a mother of one of the infants I had been caring for over the last few months came up to me. Each time I had seen her over the last few weeks, the sadness in her eyes had increased, and today was the worst. She said to me ‘today is first time we heard our daughter might die’. I listened to her, hugged her, and then, we went our separate ways. As I walked away, I thought to myself – surely we had told them that their daughter might die? The more I thought I realized that we had not. The issue had been skirted around, inferred but never confronted; the focus had been on what would happen if she did survive, not that what would happen if she did not.

A survey of Neonatal–Perinatal Medicine fellows in the United States indicated that, although they are highly trained in the technical skills necessary to care for infants, they are inadequately trained in the communication skills that families with infants in the NICU have previously identified as important [2]. I found very similar results when I surveyed Neonatal–Perinatal Medicine trainees in Australia and New Zealand [3].

What can we do about this? There is ample evidence that communication skills are not necessarily intuitive but can be, and should be, learned [4]. It is well known that effective communication by physicians can increase diagnostic accuracy, minimize litigation, enhance patient satisfaction and improve health outcomes [5]. In both Neonatology and Paediatrics, physicians must learn how to build relationships with families quickly, deliver bad news and assist families to make seemingly impossible decisions about their children. To do this effectively, they must receive training beyond the traditional model of merely observing experienced physicians. The importance of interpersonal and communication skills is well recognized through the CanMEDS initiative in Canada [6] but what remains unclear is how residents and fellows are meant to reach these fundamental competencies?

Although they have only recently been studied in neonatology [7], there are well-developed tools for teaching communication skills. Simulation has been used as education tool to teach physician–patient communication in many settings. It provides a unique opportunity to isolate and analyse physician behaviours within standardized and ‘safe’ settings [7]. This may translate well when residents and fellows are required to relate complicated medical information in emotionally difficult situations[7], a relatively frequent situation in the NICU. Many senior physicians, despite having not received previous formal communication skills training themselves, still perceive these programs as useful [8].

Communication training is often undertaken within a workshop model, using simulated patients and role-play, including constructive feedback on individual performances, supported by oral presentations, modelling and written information. Workshops tend to be resource intensive and expensive and are usually a minimum of 1-3 days duration [9]. Effective communication skill workshops include a cognitive component or evidence base for suggested skills, a behavioural component that allows participants to practice the actual communication skills learned through role-playing, and an affective component allowing participants to explore the feelings raised by communicating difficult issues [9].

As I progress through my training to become a neonatologist, I have increasingly realized that communication is a key to effectively caring for my patients and their families as important than my ability to place an arterial line or central venous catheter. When I started my training, I was scared to speak with families, partly in fear of saying ‘the wrong thing’ and making the situation worse. Through my attendance at communication skills training courses, the mentoring and encouragement I have received from senior clinicians and with increasing experience, these fears have dissipated. The families I have met and cared for have impacted me in ways I am only beginning to realize.

Last year, I sat with the parents of a baby girl I had been caring for over the preceding week. She was dying, and I sat with her parents as she drifted away from us. I was honoured that they had asked me to be there to be with them, and I was able to offer some reassurance for this family. It was at this point I realized that this is what will make me a neonatologist – the ability to be with a family when you have nothing else medically to offer them but only your words and your presence. Later in the day, one of my colleagues asked me ‘Why did you stay with them? Isn't that the nurse's job?’

It is within our power to advocate for improved communication skills training for our residents and fellows caring for infants and children, whether through formal communication skills training or by taking residents to speak with families and giving them constructive feedback regarding their performance. Our medical culture must support those learning to communicate with families by showing them that speaking with a family by the bedside, even to just say ‘hello’, is just as important as learning to place a chest drain. The families in our neonatal units deserve the very best care. Never again do I want to hear a parent have to ask ‘Please call my baby by her name…’.

Conflict of Interest

The author has no conflict of interests to declare.

Funding

The Medical Insurance Group of Australia (MIGA) Doctors in Training Grants Programme.

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