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Sudden Traumatic Death in Children: Interview With Elaine C. Meyer
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Sudden Traumatic Death in Children: Interview With Elaine C. Meyer
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>> Hello and welcome to JAMAevidence, our monthly podcast focused on core issues in evidence-based medicine. Today, we're discussing sudden traumatic death in children and reflecting on the ways that clinicians provide care and support to families going through this tragic life event. Joining us today is Dr. Elaine Meyer, the author of a chapter in Care at the Close of Life on this topic. >> I can remember one time that I was working with a family whose child had a very serious head injury and the child was dying, and I spent quite a bit of time with the family.
And the grandfather was flying in, and the family very much wanted to wait until he arrived, and he did not speak English. And I can remember when I met with him, there really were no words that transpired between us, and what he did was he bowed to me and it left such an impression on me. It was just, I think what he was communicating in that moment is thank you for being there for my grandchild and for my daughter and son-in-law, and he just knew how much the team cared and how hard the team was working.
And there were no words spoken, but he just bowed. And what I did in return was, I just bowed back to him. I mean that was the extent of what sort of transpired between us, and that was a moment that I felt that I really always wanted to take the time and do my very best as a clinician in these rarified moments, and if we find ourselves in the center of a family's hurricane with them, that we want to stand by them during those moments and also be available afterwards.
>> Today's episode is designed to help you support these families through one of their most trying moments. And at the same time, we want to prepare you for the emotional challenges associated with providing that care. Amy Thompson, our Associate Editor here at JAMA, continues the conversation with Dr. Meyer. >> Dr. Meyer, I'd like to find out, what do you think makes sudden traumatic death in children different from that in adults? >> Well, I think what makes it so traumatic is that it's so unnatural, it just turns the whole expected order of the universe on its head to outlive a child, especially for a parent.
So I think just that tremendous violation of expectations that we have as parents, as family members, and also as a society, just compound how difficult it is when we have a traumatic death of a child. >> So that becomes difficult, not only for parents, but also for clinicians, there is kind of another layer of skills that we need to bring to the table there. >> I would say absolutely. People that work in trauma and in pediatric intensive care units and emergency departments, I mean this is what they train for, but still you never get used to it, so to speak.
I mean hopefully it never becomes so routine, and it's what we all work to really prevent. >> One of the focuses in the chapter is obviously communication with parents in these instances. And there have been studies done that have revealed that a lot of what parents remember about the care that their child received in a situation like this is really shaped by how they were communicated with by the medical staff.
And there's a case described in the chapter and one of the doctors mentioned some of the important things that he has identified in order to kind of foster good communication and make that communication as empathetic as possible with parents. He mentions allowing himself not to be stressed, so making sure that he is not going to be taken away from the conversation. And one of the things that I really liked was that he said that he likes to be able to sit and allow there to be silence if there needs to be silence for parents.
It's really about being 100% involved in this conversation and letting it take its natural course. What have you found to be important things in kind of optimizing communication in these instances? >> Well, I think the physician in the article really speaks to trying to be present in that moment. It's so very important. So as a professional, even though you may have experienced these kinds of situations before, for the family before you, it is most likely the very first time that they've experienced anything like this, so that you want to bring to bear your experience and your professionalism, but you really, really want to have your humanity right there.
And that's really what people tend to remember. So when the physician said that he, you know, sat down, he got at the level of the family. He listened. He provided some information in a way that they could understand it. But there was a lot of spaciousness to the conversation, is what I would say, that he could pick up on their emotions. He wouldn't interrupt them, for instance, or intrude on a thought that they were having. Those are the kinds of things that people really remember, you know, a year down the line, five years down the line, 10 years down the line.
It's unlikely that people are going to remember things such as the names of the medicines or maybe the surgeries or the particular procedures, but what they will remember is what people said to them, how people treated them. Did people take the time with them? Did people express their own humanity and emotions? Did they feel a connection, so to speak, with the staff members? That's the difference between what I would say a good clinician and a great clinician, that were able to somehow make sure that our humanity is palpable to the family members, because then what they take away from that is that this clinician really cared.
My child was more than a patient. >> This is right along the lines of your TEDx talk, entitled "On Being Present, Not Perfect." In that talk you approached it both as a patient and as a clinician, but you said that it's so important for clinicians to really just make that first step, to step up and have that conversation and try to forge that connection with families, and that they don't have to be perfect.
They don't have to know exactly what to say or say all the right things, but that doing it anyway is so important. >> Yeah, I think all of my work in the pediatric intensive care unit really prepared me to deliver that TED Talk. I'm trained as a Nurse and also as a clinical psychologist, so I feel quite comfortable in the realm of these difficult and challenging conversations. But what I noticed is that many of my colleagues were more or less comfortable with these challenging conversations.
This might not have been their main area of practice. And so even though they were very skillful and expert in their areas of practice, going into these difficult conversations can feel a little bit uncomfortable. It can feel like it's just not their wheelhouse. And I was often asked as a psychologist to accompany the teams into the meetings as a support person, as a person who would then later go back in and meet with the families. But what I've really dedicated a large part of my education to is really some educational programs and training for my fellow colleagues to feel more capable and more comfortable to hold these conversations.
You know, at 2 or 300 in the morning, there may not be a social worker or a psychologist or a psychiatrist around, so I felt quite strongly that all clinicians want to have a basic level of competency. So we're really talking about capacity building here so that people feel that they can listen, that they can be supportive of families, that they know how to ask an open-ended question, for instance, and to honor the patients' and the families' emotions and to feel okay about that, to feel that that may not be their primary area of expertise.
But they can be a generalist in that area, and if they need help or they need to refer to a specialist in that area, that that's entirely possible. But there's always help for clinicians to learn how to hold these conversations. And you mentioned that yolk of perfection. People sometimes hold themselves to such high standards, our clinicians, about how we converse, you know, there are many scripts for people, there are mnemonics for people to remember. And I think that those can be very helpful, but inevitably you go off script.
You know, someone is going to ask you a question, or an emotion is going to arise, and you're going to be off script very quickly. And so I feel that having people, to say to them, listen, the most important thing is to be present, not perfect. Don't put more pressure on yourself to be absolutely perfect in these conversations because people -- they're not looking for perfection. When it comes to conversations and being in a relationship with somebody, perfect isn't good enough. You want someone to be there with their full humanity.
And that includes, you know, for instance, if a clinician stumbles over a word or might be a little disfluent, for instance, we have tapes of clinicians and I've dedicated a good part of my career to looking at these conversations, and that's very common. But if you ask families afterwards, oftentimes they won't remember that part or it just seems very natural that the physician or the nurse, what have you, whoever is communicating with them, you know, it was a sign of caring that they really wanted to get this right.
They don't judge you for how perfect you are in these conversations. Obviously, you don't want to be giving misinformation. But yet when it comes to supporting a family, listening to them, letting them tell their story, reassuring them, those are the kinds of things that I think all of us can do. And in our Institute for Professionalism and Ethical Practice at Boston Children's Hospital, that's the kind of thing that we've been training our clinicians and our teams to be able to do. >> One thing mentioned in the chapter, and certainly I've come across this in my own experience, is the importance for clinicians to approach these conversations calmly.
Obviously, that doesn't mean withholding our humanity. But we do want to maintain as much of a sense of calm as possible. And I saw in the chapter something mentioned about how this can sometimes backfire. Parents or families will maybe interpret that as the clinician being detached. So how do we walk that line? >> It is a fine line to walk. It's interesting that you bring that up.
Carl Rogers, famous psychotherapist, he used to say one anxious person in the room is enough. And that has guided me because I feel that one of the things that is important, as a clinician trying to invite these conversations and hold these challenging conversations, is to be that sort of calm, non-anxious presence to the extent that you're able to do that, to help hold those emotions in the room, which can be very, very strong, you know, of sadness, anger, despair.
However, we are human too. And I think where it can backfire is if we become too professionalized, too sanitized, if we over-privilege being sort of in control, very, very professional, it can create a distance rather than a connection with the families. And so I think that that's that fine line that we want to be able to hold the emotions, but also families very much do remember and appreciate it when clinicians can express their own emotions.
Now it can't be about the clinician's emotions. It's about the family's emotions. But yet if you were to choke up, if you were to become disfluent a bit, if you were to tear up, for instance, and if you ask clinicians who do this for a living, almost invariably they will say, well, of course that's happened. But the point is to sort of breathe through it, to take a moment if you need to. The families will understand this. And what they perceive most often is that you're human and that you care.
They don't think less of you in an instance like this. Most often they think more of you. But the important point is that you can't be the last one crying. It can't be more about your emotions than theirs. But to the extent that the family feels that it's a shared human experience, that's what's important to them, that's what they're going to remember, and that will shape the remembrance of this experience and that the staff was caring, that the staff was kind, compassionate, and that they were with us.
They walked this journey with us. They didn't walk it from the sidelines or stand aside, you know, too detached, or too "professional", if you will. >> I think historically in medical education, for physicians at least, these types of skills, these relational skills were not necessarily taught. Certainly the focus was on professionalism, and that does seem to be changing. In your experience, is there more of an emphasis on these abilities to communicate and how to really help clinicians and other medical staff foster those abilities?
>> I think that there has been a shift, I'm so happy to say, that I think that traditionally these skills might have been thought of as "soft skills." But we talk about them maybe historically as bedside manner. And I think that traditionally the way people learned about these was that they watched other people. And it was very much learning by trial and error that you would have role models and you would maybe incorporate certain aspects of how they would speak with families or what their bedside manor was, how they related with families.
And so that's one way to learn, and we are always learning by observing our teammates and our mentors. But I think that's not the only way the learn, and so I think that in the professions that would be in a pediatric intensive care unit and accompanying families during these traumatic events that there is more of an emphasis on communication and relational training of our staff members. Simulation has become very well populated in a lot of the academic medical centers and community hospitals, where people get an opportunity to practice, either through role play, or they could be using simulated patients who could be actors or standardized patients where you can practice a little bit what are these conversations like.
So the pressure is off you a little bit. It's not like you're going to make a terrible mistake or say something that you really regretted. And in my world, I do quite a lot of workshops here at the Institute for Professionalism and Ethical Practice with my teammates, and we have a saying, practice makes better. Practice doesn't make perfect in the realm of communication and relational skills because perfect wouldn't be good enough, as I said. But what happens is that you get a chance to hear these words come out of your mouth. They become a little bit more second nature.
It's not like the first time that you've ever said these kinds of things or asked these questions. But you learn how to pace yourself, how to not interrupt people, how to give a family a chance to answer so that maybe they can understand what it is that they're trying to say. And that takes some role modeling. It takes the opportunity to have a chance to practice, to get feedback from actual family members. In our workshops we have family faculty, and we like to teach with patients and family members so that our clinicians can get firsthand feedback about, gee, how did that come off?
How did that sound? Did it sound too rote? Did it sound too technical, for instance? Did it make sense to me? We like to see, do our clinicians take the time to maybe make a few notes for a family, to write something down for them? Maybe they can make a drawing so that a family member can understand things better. So that when we talk about communication and relational skills, it's about so much more than just the spoken word.
It's about our presence. Sometimes it's what we don't say and just being there so that the family does not feel alone. I think the ideal would be that they feel accompanied. They feel that there's somebody on this journey with them. And in the situation where there's a traumatic injury or traumatic death situation, oftentimes the clinicians get pulled into that inner circle with the family very quickly because they have some experience. They're also physically there and available.
Sometimes family members and friends just don't know how to relate to this, and so they may or may not be as helpful as they would like to be, but the clinicians really can become part of that inner circle and a very important part of a family's social support network, especially during the hospitalization. >> Another thing that I was struck by in the book was this notion that even after a diagnosis of brain death has been made, there is still a huge opportunity available for medical staff to shape the way parents sort of perceive the death of their child.
Certainly, as a physician, once brain death has been diagnosed, the death has already occurred. But I don't think that that's necessarily what families experience as the death of their child. >> I totally agree with you. I feel that sometimes the concept of brain death is a very difficult one to understand and to kind of wrap your head around so that if a child is brain dead, they are considered legally dead. But yet you can have a child that's intubated on the ventilator looking very peaceful, their color can be good, they can look like they're sleeping.
And so it's sort of an important part of our duty to help families understand sort of what brain death means and to help them understand that it's the life support equipment that's keeping the child going, so to speak. And if that was withdrawn, the heart would stop beating and the child would no longer be alive. But it's hard, especially for families that are, you know, in shock or very distraught, to really understand that sometimes they need more time to understand this and to let this sink in.
And I think that's one thing -- it's an art form when we converse with families and when we hold these conversations to try to permit them the kind of time that they need to let this sink in, if at all possible, so that we don't feel like we're rushing them, that they can have the time with their child to say the things that they need to. Those tender moments are just absolutely irreplaceable. And when a clinician can make those things possible and have these good conversations at the end of life for families, it's not only good for the families and for their early bereavement experience and their grief experiences, but it's also very good for the staff in that you felt that you were able to take care of the family, that you were able to possibly do some good.
So that I think that it not only is a good thing for the families, it's also good for us as staff to feel that we sort of follow through with that duty, that we made these opportunities available, and that it keeps us going. I mean it's a good part of us being able to continue to do this work is to feel that we made this situation, this sort of impossible situation as good as it possibly could be. And I think you saw in the JAMA article, both the social worker and the physician reflected on the conversations that they were able to have, that they provided good care.
But they also provided the opportunity for those conversations, and that they took some solace in those, and it helped them to continue to do this kind of work. >> What are the other ways for medical staff to keep going? One of the things you said is that this takes a toll on clinicians as well as on the families who experience these traumatic events. How else do we support our clinicians going through those traumas time and time again?
>> Yeah, I mean there's no question about it. As a clinician, you can be vicariously traumatized from these experiences. I've done quite a number of support groups for staff, and I mean they can haunt staff members. And so I think it's very important to have, if you will, sort of a, like a supply of ways that you can help replenish yourself. So I think always remembering that you're part of a team is a very good thing for clinicians, to remember that you're not alone in this.
And so to the extent that you can rely on your team members and that you have the opportunity, before you go in with the family, for instance, to pre-brief, to just, again, get ready for these conversations so to speak, to feel that you understand the information, we understand what it is that we need to communicate with the family, that we're not alone when we do this. So the teamwork is very important. The opportunities to huddle, if you will, or pre-brief before we have these conversations, as well as the chance to come together after we have the conversations, to just reflect.
And so this is very much a part of our reflective practice. You know, what went well? What was the family's response? What did we promise to the family? Did we say to them, we're going to be coming back shortly to provide some test results, or what have you, or to speak with them again, so that we very much want to uphold our promises. That's a good way for us to feel good about the care that we provide. I think every unit, to the extent that they can have a network of support activities in place, is very important.
If there are deaths on the unit, for instance, the opportunity to come together as a team to reflect on the child's life, and also to make sure that we're taking good care of ourselves. Many times, depending on the relationship that we have with the family and the patient, it's important for staff members to attend memorial services, funerals. Sometimes hospitals will have their own memorial services annually or even more frequently. And that can be a very important part of coping and being able to continue to do this work.
I think each one of us that does this has to do some soul searching about, how am I going to take care of myself? Who do I turn to? Who can I talk to? And also, life affirming activities or hobbies, if you will, you know, whatever it is, you know, if there's exercise or photography. Nature can be very healing. But having some life-affirming activities that can, if you will, balance out or offset some of the trauma or the difficult circumstances that you might be continually bombarded with or exposed to in your everyday work.
I think to the extent that if you have a difficult situation like this, that there can be some assignment relief afterwards, meaning that you wouldn't be expected to go right back in and take on another trauma case. To the extent that we can staff for that, that can be very, very important for our staff members to continue to do this work and to uphold retention, and you know, motivation for people to keep doing this work. And I guess it goes without saying that people need sort of continual education around these kinds of things.
You know, how do I speak with families so that they can feel good about their communication and relational skills in addition to their technical skill expertise. >> I want to sort of back up just very briefly. Do you approach families initially to determine what their communication preferences are? Do you ask that outright? Do you just sort of gather that from the nonverbal feedback that you're getting from families? What is that process? >> I think it's a combination of both.
I have seen clinicians very effectively ask the families. When you've been in difficult situations before, what has been helpful to you? I want to make sure that I am honest with you. I always think, if there's two things that we can uphold, it's our honesty and our kindness. And so to the extent that the family knows that you want to get it right and that you want to tailor your communication and customize it to what works best for them, I think it is okay to ask them if it's not going to overwhelm them. So for instance, you could say, you know, are you the kind of person who likes to know all the details?
Or are you the kind of person who wants to have the bigger picture? Or are you both? Do you want the details as well as the bigger picture? Some people are numbers people. They want to know all the lab values. They want to know the details. Other people are absolutely not numbers people. And so I think it's okay to do a little bit of an assessment. But if the family is overwhelmed, I think you should rely on your own assessment skills, and the family sometimes is pretty transparent about what it is that they need.
But I think it's also fine to ask them more directly, you know, how can I be helpful. I really want to get this right. Sometimes families want to be right at the bedside. They want to observe and be there during, you know, invasive procedures and resuscitation, what have you. Other families need to step aside from the bedside. they may even want to go into the family waiting room. So we really want to assess what their preferences are and to accommodate those and to be able to provide the information and emotional support that they need, you know, based on where they're at and what's going to best serve them.
>> Have there been moments where you really realized that this was important work that maybe had not been being addressed in the most beneficial way? >> Well, there certainly have been moments in my career that it becomes clear to me that this is not just a job. This is not just a position, it's a calling. And I want to do everything that I can in my power to uphold my sense that I love this work, that I am dedicated to this work.
But I think some of those strategies that we talked about in terms of good self-care, remembering that we're part of a strong team, continually sort of reflecting on our practice and being able to continually learn, lifelong learning, keeps me going. But there have been a few moments that just stay with me and can be decades old but have really shaped who I am as a professional. I can remember one family that I was working with, and they had two young boys who were probably about 10 and 13.
And the younger brother was going to be undergoing an apnea test and they were going to be going through the brain death test. And I remember the family asked permission if the two siblings could go in and observe this. And that is not a typical thing that was happening on our unit at the time. And the family made a very compelling case, and one of the boys, the 13-year-old, said to me "I don't think I'll ever be able to cope with this or think that this is real unless I see this with my own eyes." And so I made a case with the neurologist and with our intensivist that I felt that this was important enough for these two siblings and these two brothers to observe, and that I asked special permission and that I would be with them.
And I asked if they might be able to observe this to the extent that they were able to do that. And I did quite a bit of preparation with them and their family for what they would be seeing. But I remember that was also very moving because it was very customized to what that particular family and those children needed to be able to understand their younger brother's death, and to not have any regrets about something that they might not have been able to do later. That's another thing that guides my practice is that I ask people what might be helpful to them.
And we really want to make the kind of situation, if at all possible, that people can look back and not have any regrets about something that they might have done or might have said and that later on it haunts them. So that for these two particular boys, it was very important for them to bear witness to that test that their brother was having and to be able to talk it over afterwards and what it meant with the doctors and with the team, that they wanted to be there for him. And that was another experience that stood out for me and really shaped my career and why I feel that communication and relational skills of our clinicians is just absolutely paramount during times like this.
>> I'm glad you shared that example. I have to be honest, my gut reaction when you said that these siblings wanted to observe these tests was "no, that is a terrible idea, that would be adding trauma to trauma." >> My first reaction was I'm not sure this is a good idea. >> Yeah. >> And absolutely. But I spent quite a bit of time trying to understand the reasoning for this and those parents were very supportive of this.
And they hadn't promised this to the children, but they had promised that they would find out about it. And I felt that the process of listening to them, even if they would not have been able to observe those tests, was also equally important. >> Yeah. >> But what I felt was very important is that I would advocate for them. I felt a duty to do that. I was also very impressed with how certain they were that this was something that they needed. They really impressed me in that regard, that they had thought this through, they had talked it over with their parents, and this was something that they wanted to do.
And what was going on in the family is that, you know, they provided a lot of care for their younger brother. And this was very much in keeping with their role in the family. They were the older brothers and they wanted to be able to follow through and to be the older brothers in the manner in which they were accustomed to. And so I talked it over with the neurologist and the intensivist. And at first they were a little skeptical, and what I said is would we be willing to try this, and if the children become upset or it becomes too much for them to handle that we would have an exit strategy and it would be clear ahead of time, and it would also not interfere with them being able to conduct the test.
That's very, very important in terms of families being present during invasive procedures and tests like this and resuscitation, what have you, that it not interfere with the therapeutic milieu and the clinician's ability to do what's so important for them. And so with those assurances, we talked it over with the family and they wanted to try. And I felt that it was important for them at least to try. I thought there would be a good chance that we would be using those exit strategies and leaving ahead of time, but they stayed through the entire exam, and then we were able to discuss it as a team with the family afterwards.
I have to say, I think it was one of the team's finest hours. Again, we were customizing it to what those children needed and what that family needed and asked for. And I think our willingness to trust and to at least try it because, like I said, there's no sort of absolute prescription on how to do this. You're making it up a little bit as you go, and you really want to customize it. And I think just the fact that we were willing to try it, I think the family really, really appreciated that, and in fact were very, very complimentary and said that made a huge difference for them in accepting the child's death and being able to get launched on a positive trajectory in their early grief period.
>> Dr. Meyer, is there anything else about communication in these instances or your own experience that you would like to share with our listeners? >> I think what I would say is that, you know, hopefully, you know, we aren't going to find ourselves in these situations, either as a clinician or as a patient or a family member, but these conversations are just part of the territory. They're part of the terrain in the Emergency Room and in the intensive care units.
And I think it behooves all of us to be able to understand how important these conversations are and to do them well. And by well, I mean being able to sort of fully engage in them and to feel that we can do this as a team, to not put undue pressure and to sort of put that yolk of perfection, you know, on top of yourself so that you feel that if you make one mistake or one mishap with the way that you say something that it's going to be a disaster.
Remember, families can be quite forgiving. You can always restate things. But I think to the extent that families get the message that you really want them to understand things, that you're being forthcoming with information, that the team is trustworthy, that we're being honest with the information, and that we're going to walk side by side, we're going to go the distance with them. This is the kind of thing that makes a big impression on the families. And I think to the extent that our clinicians can have opportunities to learn how to hold these conversations and to practice them, not under the spotlight or the glare or the pressure of an actual clinical situation, but in a simulated setting with other team members can be very reassuring to them that they can go in and they can have those lessons sort of behind them that they can draw on in these experiences.
I would say that those are the messages that I would leave people with and to be present not perfect in those moments and to remember that these conversations are so appreciated and long remembered by family members, that I think to the extent that we can do them and fully engage and do them well, is not only good patient care, it's also good care for the team and good self-care. >> Elaine, thank you so much for talking to me today. This has just been a really enlightening conversation, and I appreciate you taking the time.
>> Dr. Elaine Meyers, the Cofounder and Director of the Institute for Professionalism and Ethical Practice; she's also the Director of the program To Enhance Relational and Communication Skills and an Associate Professor of Psychology in the Department of Psychiatry at Harvard Medical School. More information on this topic is available in Care at the Close of Life and on our website, JAMAevidence.com, where you can listen to our entire roster of podcasts. Thanks so much for listening, and we'll be back soon with another episode of JAMAevidence.
Segment:0 .
>> Hello and welcome to JAMAevidence, our monthly podcast focused on core issues in evidence-based medicine. Today, we're discussing sudden traumatic death in children and reflecting on the ways that clinicians provide care and support to families going through this tragic life event. Joining us today is Dr. Elaine Meyer, the author of a chapter in Care at the Close of Life on this topic. >> I can remember one time that I was working with a family whose child had a very serious head injury and the child was dying, and I spent quite a bit of time with the family.
And the grandfather was flying in, and the family very much wanted to wait until he arrived, and he did not speak English. And I can remember when I met with him, there really were no words that transpired between us, and what he did was he bowed to me and it left such an impression on me. It was just, I think what he was communicating in that moment is thank you for being there for my grandchild and for my daughter and son-in-law, and he just knew how much the team cared and how hard the team was working.
And there were no words spoken, but he just bowed. And what I did in return was, I just bowed back to him. I mean that was the extent of what sort of transpired between us, and that was a moment that I felt that I really always wanted to take the time and do my very best as a clinician in these rarified moments, and if we find ourselves in the center of a family's hurricane with them, that we want to stand by them during those moments and also be available afterwards.
>> Today's episode is designed to help you support these families through one of their most trying moments. And at the same time, we want to prepare you for the emotional challenges associated with providing that care. Amy Thompson, our Associate Editor here at JAMA, continues the conversation with Dr. Meyer. >> Dr. Meyer, I'd like to find out, what do you think makes sudden traumatic death in children different from that in adults? >> Well, I think what makes it so traumatic is that it's so unnatural, it just turns the whole expected order of the universe on its head to outlive a child, especially for a parent.
So I think just that tremendous violation of expectations that we have as parents, as family members, and also as a society, just compound how difficult it is when we have a traumatic death of a child. >> So that becomes difficult, not only for parents, but also for clinicians, there is kind of another layer of skills that we need to bring to the table there. >> I would say absolutely. People that work in trauma and in pediatric intensive care units and emergency departments, I mean this is what they train for, but still you never get used to it, so to speak.
I mean hopefully it never becomes so routine, and it's what we all work to really prevent. >> One of the focuses in the chapter is obviously communication with parents in these instances. And there have been studies done that have revealed that a lot of what parents remember about the care that their child received in a situation like this is really shaped by how they were communicated with by the medical staff.
And there's a case described in the chapter and one of the doctors mentioned some of the important things that he has identified in order to kind of foster good communication and make that communication as empathetic as possible with parents. He mentions allowing himself not to be stressed, so making sure that he is not going to be taken away from the conversation. And one of the things that I really liked was that he said that he likes to be able to sit and allow there to be silence if there needs to be silence for parents.
It's really about being 100% involved in this conversation and letting it take its natural course. What have you found to be important things in kind of optimizing communication in these instances? >> Well, I think the physician in the article really speaks to trying to be present in that moment. It's so very important. So as a professional, even though you may have experienced these kinds of situations before, for the family before you, it is most likely the very first time that they've experienced anything like this, so that you want to bring to bear your experience and your professionalism, but you really, really want to have your humanity right there.
And that's really what people tend to remember. So when the physician said that he, you know, sat down, he got at the level of the family. He listened. He provided some information in a way that they could understand it. But there was a lot of spaciousness to the conversation, is what I would say, that he could pick up on their emotions. He wouldn't interrupt them, for instance, or intrude on a thought that they were having. Those are the kinds of things that people really remember, you know, a year down the line, five years down the line, 10 years down the line.
It's unlikely that people are going to remember things such as the names of the medicines or maybe the surgeries or the particular procedures, but what they will remember is what people said to them, how people treated them. Did people take the time with them? Did people express their own humanity and emotions? Did they feel a connection, so to speak, with the staff members? That's the difference between what I would say a good clinician and a great clinician, that were able to somehow make sure that our humanity is palpable to the family members, because then what they take away from that is that this clinician really cared.
My child was more than a patient. >> This is right along the lines of your TEDx talk, entitled "On Being Present, Not Perfect." In that talk you approached it both as a patient and as a clinician, but you said that it's so important for clinicians to really just make that first step, to step up and have that conversation and try to forge that connection with families, and that they don't have to be perfect.
They don't have to know exactly what to say or say all the right things, but that doing it anyway is so important. >> Yeah, I think all of my work in the pediatric intensive care unit really prepared me to deliver that TED Talk. I'm trained as a Nurse and also as a clinical psychologist, so I feel quite comfortable in the realm of these difficult and challenging conversations. But what I noticed is that many of my colleagues were more or less comfortable with these challenging conversations.
This might not have been their main area of practice. And so even though they were very skillful and expert in their areas of practice, going into these difficult conversations can feel a little bit uncomfortable. It can feel like it's just not their wheelhouse. And I was often asked as a psychologist to accompany the teams into the meetings as a support person, as a person who would then later go back in and meet with the families. But what I've really dedicated a large part of my education to is really some educational programs and training for my fellow colleagues to feel more capable and more comfortable to hold these conversations.
You know, at 2 or 300 in the morning, there may not be a social worker or a psychologist or a psychiatrist around, so I felt quite strongly that all clinicians want to have a basic level of competency. So we're really talking about capacity building here so that people feel that they can listen, that they can be supportive of families, that they know how to ask an open-ended question, for instance, and to honor the patients' and the families' emotions and to feel okay about that, to feel that that may not be their primary area of expertise.
But they can be a generalist in that area, and if they need help or they need to refer to a specialist in that area, that that's entirely possible. But there's always help for clinicians to learn how to hold these conversations. And you mentioned that yolk of perfection. People sometimes hold themselves to such high standards, our clinicians, about how we converse, you know, there are many scripts for people, there are mnemonics for people to remember. And I think that those can be very helpful, but inevitably you go off script.
You know, someone is going to ask you a question, or an emotion is going to arise, and you're going to be off script very quickly. And so I feel that having people, to say to them, listen, the most important thing is to be present, not perfect. Don't put more pressure on yourself to be absolutely perfect in these conversations because people -- they're not looking for perfection. When it comes to conversations and being in a relationship with somebody, perfect isn't good enough. You want someone to be there with their full humanity.
And that includes, you know, for instance, if a clinician stumbles over a word or might be a little disfluent, for instance, we have tapes of clinicians and I've dedicated a good part of my career to looking at these conversations, and that's very common. But if you ask families afterwards, oftentimes they won't remember that part or it just seems very natural that the physician or the nurse, what have you, whoever is communicating with them, you know, it was a sign of caring that they really wanted to get this right.
They don't judge you for how perfect you are in these conversations. Obviously, you don't want to be giving misinformation. But yet when it comes to supporting a family, listening to them, letting them tell their story, reassuring them, those are the kinds of things that I think all of us can do. And in our Institute for Professionalism and Ethical Practice at Boston Children's Hospital, that's the kind of thing that we've been training our clinicians and our teams to be able to do. >> One thing mentioned in the chapter, and certainly I've come across this in my own experience, is the importance for clinicians to approach these conversations calmly.
Obviously, that doesn't mean withholding our humanity. But we do want to maintain as much of a sense of calm as possible. And I saw in the chapter something mentioned about how this can sometimes backfire. Parents or families will maybe interpret that as the clinician being detached. So how do we walk that line? >> It is a fine line to walk. It's interesting that you bring that up.
Carl Rogers, famous psychotherapist, he used to say one anxious person in the room is enough. And that has guided me because I feel that one of the things that is important, as a clinician trying to invite these conversations and hold these challenging conversations, is to be that sort of calm, non-anxious presence to the extent that you're able to do that, to help hold those emotions in the room, which can be very, very strong, you know, of sadness, anger, despair.
However, we are human too. And I think where it can backfire is if we become too professionalized, too sanitized, if we over-privilege being sort of in control, very, very professional, it can create a distance rather than a connection with the families. And so I think that that's that fine line that we want to be able to hold the emotions, but also families very much do remember and appreciate it when clinicians can express their own emotions.
Now it can't be about the clinician's emotions. It's about the family's emotions. But yet if you were to choke up, if you were to become disfluent a bit, if you were to tear up, for instance, and if you ask clinicians who do this for a living, almost invariably they will say, well, of course that's happened. But the point is to sort of breathe through it, to take a moment if you need to. The families will understand this. And what they perceive most often is that you're human and that you care.
They don't think less of you in an instance like this. Most often they think more of you. But the important point is that you can't be the last one crying. It can't be more about your emotions than theirs. But to the extent that the family feels that it's a shared human experience, that's what's important to them, that's what they're going to remember, and that will shape the remembrance of this experience and that the staff was caring, that the staff was kind, compassionate, and that they were with us.
They walked this journey with us. They didn't walk it from the sidelines or stand aside, you know, too detached, or too "professional", if you will. >> I think historically in medical education, for physicians at least, these types of skills, these relational skills were not necessarily taught. Certainly the focus was on professionalism, and that does seem to be changing. In your experience, is there more of an emphasis on these abilities to communicate and how to really help clinicians and other medical staff foster those abilities?
>> I think that there has been a shift, I'm so happy to say, that I think that traditionally these skills might have been thought of as "soft skills." But we talk about them maybe historically as bedside manner. And I think that traditionally the way people learned about these was that they watched other people. And it was very much learning by trial and error that you would have role models and you would maybe incorporate certain aspects of how they would speak with families or what their bedside manor was, how they related with families.
And so that's one way to learn, and we are always learning by observing our teammates and our mentors. But I think that's not the only way the learn, and so I think that in the professions that would be in a pediatric intensive care unit and accompanying families during these traumatic events that there is more of an emphasis on communication and relational training of our staff members. Simulation has become very well populated in a lot of the academic medical centers and community hospitals, where people get an opportunity to practice, either through role play, or they could be using simulated patients who could be actors or standardized patients where you can practice a little bit what are these conversations like.
So the pressure is off you a little bit. It's not like you're going to make a terrible mistake or say something that you really regretted. And in my world, I do quite a lot of workshops here at the Institute for Professionalism and Ethical Practice with my teammates, and we have a saying, practice makes better. Practice doesn't make perfect in the realm of communication and relational skills because perfect wouldn't be good enough, as I said. But what happens is that you get a chance to hear these words come out of your mouth. They become a little bit more second nature.
It's not like the first time that you've ever said these kinds of things or asked these questions. But you learn how to pace yourself, how to not interrupt people, how to give a family a chance to answer so that maybe they can understand what it is that they're trying to say. And that takes some role modeling. It takes the opportunity to have a chance to practice, to get feedback from actual family members. In our workshops we have family faculty, and we like to teach with patients and family members so that our clinicians can get firsthand feedback about, gee, how did that come off?
How did that sound? Did it sound too rote? Did it sound too technical, for instance? Did it make sense to me? We like to see, do our clinicians take the time to maybe make a few notes for a family, to write something down for them? Maybe they can make a drawing so that a family member can understand things better. So that when we talk about communication and relational skills, it's about so much more than just the spoken word.
It's about our presence. Sometimes it's what we don't say and just being there so that the family does not feel alone. I think the ideal would be that they feel accompanied. They feel that there's somebody on this journey with them. And in the situation where there's a traumatic injury or traumatic death situation, oftentimes the clinicians get pulled into that inner circle with the family very quickly because they have some experience. They're also physically there and available.
Sometimes family members and friends just don't know how to relate to this, and so they may or may not be as helpful as they would like to be, but the clinicians really can become part of that inner circle and a very important part of a family's social support network, especially during the hospitalization. >> Another thing that I was struck by in the book was this notion that even after a diagnosis of brain death has been made, there is still a huge opportunity available for medical staff to shape the way parents sort of perceive the death of their child.
Certainly, as a physician, once brain death has been diagnosed, the death has already occurred. But I don't think that that's necessarily what families experience as the death of their child. >> I totally agree with you. I feel that sometimes the concept of brain death is a very difficult one to understand and to kind of wrap your head around so that if a child is brain dead, they are considered legally dead. But yet you can have a child that's intubated on the ventilator looking very peaceful, their color can be good, they can look like they're sleeping.
And so it's sort of an important part of our duty to help families understand sort of what brain death means and to help them understand that it's the life support equipment that's keeping the child going, so to speak. And if that was withdrawn, the heart would stop beating and the child would no longer be alive. But it's hard, especially for families that are, you know, in shock or very distraught, to really understand that sometimes they need more time to understand this and to let this sink in.
And I think that's one thing -- it's an art form when we converse with families and when we hold these conversations to try to permit them the kind of time that they need to let this sink in, if at all possible, so that we don't feel like we're rushing them, that they can have the time with their child to say the things that they need to. Those tender moments are just absolutely irreplaceable. And when a clinician can make those things possible and have these good conversations at the end of life for families, it's not only good for the families and for their early bereavement experience and their grief experiences, but it's also very good for the staff in that you felt that you were able to take care of the family, that you were able to possibly do some good.
So that I think that it not only is a good thing for the families, it's also good for us as staff to feel that we sort of follow through with that duty, that we made these opportunities available, and that it keeps us going. I mean it's a good part of us being able to continue to do this work is to feel that we made this situation, this sort of impossible situation as good as it possibly could be. And I think you saw in the JAMA article, both the social worker and the physician reflected on the conversations that they were able to have, that they provided good care.
But they also provided the opportunity for those conversations, and that they took some solace in those, and it helped them to continue to do this kind of work. >> What are the other ways for medical staff to keep going? One of the things you said is that this takes a toll on clinicians as well as on the families who experience these traumatic events. How else do we support our clinicians going through those traumas time and time again?
>> Yeah, I mean there's no question about it. As a clinician, you can be vicariously traumatized from these experiences. I've done quite a number of support groups for staff, and I mean they can haunt staff members. And so I think it's very important to have, if you will, sort of a, like a supply of ways that you can help replenish yourself. So I think always remembering that you're part of a team is a very good thing for clinicians, to remember that you're not alone in this.
And so to the extent that you can rely on your team members and that you have the opportunity, before you go in with the family, for instance, to pre-brief, to just, again, get ready for these conversations so to speak, to feel that you understand the information, we understand what it is that we need to communicate with the family, that we're not alone when we do this. So the teamwork is very important. The opportunities to huddle, if you will, or pre-brief before we have these conversations, as well as the chance to come together after we have the conversations, to just reflect.
And so this is very much a part of our reflective practice. You know, what went well? What was the family's response? What did we promise to the family? Did we say to them, we're going to be coming back shortly to provide some test results, or what have you, or to speak with them again, so that we very much want to uphold our promises. That's a good way for us to feel good about the care that we provide. I think every unit, to the extent that they can have a network of support activities in place, is very important.
If there are deaths on the unit, for instance, the opportunity to come together as a team to reflect on the child's life, and also to make sure that we're taking good care of ourselves. Many times, depending on the relationship that we have with the family and the patient, it's important for staff members to attend memorial services, funerals. Sometimes hospitals will have their own memorial services annually or even more frequently. And that can be a very important part of coping and being able to continue to do this work.
I think each one of us that does this has to do some soul searching about, how am I going to take care of myself? Who do I turn to? Who can I talk to? And also, life affirming activities or hobbies, if you will, you know, whatever it is, you know, if there's exercise or photography. Nature can be very healing. But having some life-affirming activities that can, if you will, balance out or offset some of the trauma or the difficult circumstances that you might be continually bombarded with or exposed to in your everyday work.
I think to the extent that if you have a difficult situation like this, that there can be some assignment relief afterwards, meaning that you wouldn't be expected to go right back in and take on another trauma case. To the extent that we can staff for that, that can be very, very important for our staff members to continue to do this work and to uphold retention, and you know, motivation for people to keep doing this work. And I guess it goes without saying that people need sort of continual education around these kinds of things.
You know, how do I speak with families so that they can feel good about their communication and relational skills in addition to their technical skill expertise. >> I want to sort of back up just very briefly. Do you approach families initially to determine what their communication preferences are? Do you ask that outright? Do you just sort of gather that from the nonverbal feedback that you're getting from families? What is that process? >> I think it's a combination of both.
I have seen clinicians very effectively ask the families. When you've been in difficult situations before, what has been helpful to you? I want to make sure that I am honest with you. I always think, if there's two things that we can uphold, it's our honesty and our kindness. And so to the extent that the family knows that you want to get it right and that you want to tailor your communication and customize it to what works best for them, I think it is okay to ask them if it's not going to overwhelm them. So for instance, you could say, you know, are you the kind of person who likes to know all the details?
Or are you the kind of person who wants to have the bigger picture? Or are you both? Do you want the details as well as the bigger picture? Some people are numbers people. They want to know all the lab values. They want to know the details. Other people are absolutely not numbers people. And so I think it's okay to do a little bit of an assessment. But if the family is overwhelmed, I think you should rely on your own assessment skills, and the family sometimes is pretty transparent about what it is that they need.
But I think it's also fine to ask them more directly, you know, how can I be helpful. I really want to get this right. Sometimes families want to be right at the bedside. They want to observe and be there during, you know, invasive procedures and resuscitation, what have you. Other families need to step aside from the bedside. they may even want to go into the family waiting room. So we really want to assess what their preferences are and to accommodate those and to be able to provide the information and emotional support that they need, you know, based on where they're at and what's going to best serve them.
>> Have there been moments where you really realized that this was important work that maybe had not been being addressed in the most beneficial way? >> Well, there certainly have been moments in my career that it becomes clear to me that this is not just a job. This is not just a position, it's a calling. And I want to do everything that I can in my power to uphold my sense that I love this work, that I am dedicated to this work.
But I think some of those strategies that we talked about in terms of good self-care, remembering that we're part of a strong team, continually sort of reflecting on our practice and being able to continually learn, lifelong learning, keeps me going. But there have been a few moments that just stay with me and can be decades old but have really shaped who I am as a professional. I can remember one family that I was working with, and they had two young boys who were probably about 10 and 13.
And the younger brother was going to be undergoing an apnea test and they were going to be going through the brain death test. And I remember the family asked permission if the two siblings could go in and observe this. And that is not a typical thing that was happening on our unit at the time. And the family made a very compelling case, and one of the boys, the 13-year-old, said to me "I don't think I'll ever be able to cope with this or think that this is real unless I see this with my own eyes." And so I made a case with the neurologist and with our intensivist that I felt that this was important enough for these two siblings and these two brothers to observe, and that I asked special permission and that I would be with them.
And I asked if they might be able to observe this to the extent that they were able to do that. And I did quite a bit of preparation with them and their family for what they would be seeing. But I remember that was also very moving because it was very customized to what that particular family and those children needed to be able to understand their younger brother's death, and to not have any regrets about something that they might not have been able to do later. That's another thing that guides my practice is that I ask people what might be helpful to them.
And we really want to make the kind of situation, if at all possible, that people can look back and not have any regrets about something that they might have done or might have said and that later on it haunts them. So that for these two particular boys, it was very important for them to bear witness to that test that their brother was having and to be able to talk it over afterwards and what it meant with the doctors and with the team, that they wanted to be there for him. And that was another experience that stood out for me and really shaped my career and why I feel that communication and relational skills of our clinicians is just absolutely paramount during times like this.
>> I'm glad you shared that example. I have to be honest, my gut reaction when you said that these siblings wanted to observe these tests was "no, that is a terrible idea, that would be adding trauma to trauma." >> My first reaction was I'm not sure this is a good idea. >> Yeah. >> And absolutely. But I spent quite a bit of time trying to understand the reasoning for this and those parents were very supportive of this.
And they hadn't promised this to the children, but they had promised that they would find out about it. And I felt that the process of listening to them, even if they would not have been able to observe those tests, was also equally important. >> Yeah. >> But what I felt was very important is that I would advocate for them. I felt a duty to do that. I was also very impressed with how certain they were that this was something that they needed. They really impressed me in that regard, that they had thought this through, they had talked it over with their parents, and this was something that they wanted to do.
And what was going on in the family is that, you know, they provided a lot of care for their younger brother. And this was very much in keeping with their role in the family. They were the older brothers and they wanted to be able to follow through and to be the older brothers in the manner in which they were accustomed to. And so I talked it over with the neurologist and the intensivist. And at first they were a little skeptical, and what I said is would we be willing to try this, and if the children become upset or it becomes too much for them to handle that we would have an exit strategy and it would be clear ahead of time, and it would also not interfere with them being able to conduct the test.
That's very, very important in terms of families being present during invasive procedures and tests like this and resuscitation, what have you, that it not interfere with the therapeutic milieu and the clinician's ability to do what's so important for them. And so with those assurances, we talked it over with the family and they wanted to try. And I felt that it was important for them at least to try. I thought there would be a good chance that we would be using those exit strategies and leaving ahead of time, but they stayed through the entire exam, and then we were able to discuss it as a team with the family afterwards.
I have to say, I think it was one of the team's finest hours. Again, we were customizing it to what those children needed and what that family needed and asked for. And I think our willingness to trust and to at least try it because, like I said, there's no sort of absolute prescription on how to do this. You're making it up a little bit as you go, and you really want to customize it. And I think just the fact that we were willing to try it, I think the family really, really appreciated that, and in fact were very, very complimentary and said that made a huge difference for them in accepting the child's death and being able to get launched on a positive trajectory in their early grief period.
>> Dr. Meyer, is there anything else about communication in these instances or your own experience that you would like to share with our listeners? >> I think what I would say is that, you know, hopefully, you know, we aren't going to find ourselves in these situations, either as a clinician or as a patient or a family member, but these conversations are just part of the territory. They're part of the terrain in the Emergency Room and in the intensive care units.
And I think it behooves all of us to be able to understand how important these conversations are and to do them well. And by well, I mean being able to sort of fully engage in them and to feel that we can do this as a team, to not put undue pressure and to sort of put that yolk of perfection, you know, on top of yourself so that you feel that if you make one mistake or one mishap with the way that you say something that it's going to be a disaster.
Remember, families can be quite forgiving. You can always restate things. But I think to the extent that families get the message that you really want them to understand things, that you're being forthcoming with information, that the team is trustworthy, that we're being honest with the information, and that we're going to walk side by side, we're going to go the distance with them. This is the kind of thing that makes a big impression on the families. And I think to the extent that our clinicians can have opportunities to learn how to hold these conversations and to practice them, not under the spotlight or the glare or the pressure of an actual clinical situation, but in a simulated setting with other team members can be very reassuring to them that they can go in and they can have those lessons sort of behind them that they can draw on in these experiences.
I would say that those are the messages that I would leave people with and to be present not perfect in those moments and to remember that these conversations are so appreciated and long remembered by family members, that I think to the extent that we can do them and fully engage and do them well, is not only good patient care, it's also good care for the team and good self-care. >> Elaine, thank you so much for talking to me today. This has just been a really enlightening conversation, and I appreciate you taking the time.
>> Dr. Elaine Meyers, the Cofounder and Director of the Institute for Professionalism and Ethical Practice; she's also the Director of the program To Enhance Relational and Communication Skills and an Associate Professor of Psychology in the Department of Psychiatry at Harvard Medical School. More information on this topic is available in Care at the Close of Life and on our website, JAMAevidence.com, where you can listen to our entire roster of podcasts. Thanks so much for listening, and we'll be back soon with another episode of JAMAevidence.
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