Family Communication – PediaCast 181
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Join Dr. Mike and special guest Dr. Cynthia Gerhart, Associate Professor of Pediatrics and Psychology at Ohio state and Principal Investigator at the Center for Behavioral Health at Nationwide Children’s Hospital, as they discuss various aspects of family communication.
Topic
- Family Communication
Guest
- Dr Cynthia Gerhardt
Associate Professor of Pediatrics and Psychology
The Ohio State University
Principal Investigator, Center for Biobehavioral Health
Nationwide Children’s Hospital
Transcript
Announcer: This is PediaCast.
[Music]
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the Campus of Nationwide Children’s, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone, and welcome once again to PediaCast, a pediatric podcast for moms and dads. We’re coming to you from the campus of Nationwide Children’s Hospital in Columbus, Ohio. This is September 20th, 2011, episode 181.
We’re going to talk about something a little bit different today. We have in the studio Dr. Cynthia Gerhardt. She is a psychologist here at Nationwide Children’s Hospital. We’re going to talk about family communication in times of crisis, so we’re really looking at parents who are going through a tough, tough time. You know, their kid has been diagnosed with cancer or their child has been involved in a traumatic injury; those kinds of things, really life-changing events.
01:11
And we’re going to talk about how clinicians, doctors and nurses, can effectively communicate with families and how families can effectively communicate amongst themselves during these difficult times. So we’re going to talk about that.
I want to remind you, if there is a topic that you would like us to talk about, it’s easy to get a hold of us a PediaCast; just head on over to Pediacast.org and click on the contact link. You can also email pediacast@gmail.com, or call the voice line at 347-404-KIDS. That’s 347-404-5437.
I also want to remind you that the information presented in every episode of PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals, so if you have a concern about your child’s health, make sure you call your doctor and arrange a face-to-face interview and hands-on physical examination.
02:02
Also, your use of this program is subject to the PediaCast terms of use agreement, and you can find that over at Pediacast.org
All right, let’s welcome Dr. Cynthia Gerhardt to the studio. She is a psychologist and principal investigator in the Center for Bio Behavioral Health at the Research Institute here at Nationwide Children’s Hospital. She is also an associate professor of Pediatrics and Psychology at the Ohio State University College of Medicine and her primary focus is research on child and family adjustment to cancer and bereavement.
Welcome to PediaCast, Dr. Gerhardt.
Dr. Cynthia Gerhardt: Thank you, Dr. Patrick. I’m glad to be here.
Dr. Mike Patrick: It is great to have you here today. This is really kind of a tough topic, isn’t it?
Dr. Cynthia Gerhardt: It is. It’s a very hard one for both clinicians and for families.
Dr. Mike Patrick: Right. So I guess let’s start out and we kind of set the stage here in the introduction that we’re discussing when families are in crisis, so to speak, and there’s a lot of communication that obviously parents need to know that their medical team is on top of things from a medical standpoint, but if there’s not effective communication, it doesn’t really matter, you know, that they know what they’re doing if the family perceives that they don’t or there’s roadblocks or problems.
03:18
Dr. Cynthia Gerhardt: That’s correct. Families, particularly when their child is seriously injured or ill, have a really hard time with trying to make sure that their child is safe and getting the kind of care that they need, but also making sure that they’re getting updates on what is happening.
Certainly, in the early stages of that process, that maybe coming in bits and pieces while their child is being tended to or assessed, but they do expect that there’s some point where the medical team does sit down with them and give them some complete information about how their child is doing and what to expect.
Dr. Mike Patrick: Right. You used the word “expectation”, and what expectations do families have of the medical team during a time of crisis? They want them to sit down, what kind of information are they looking for and what’s the best way to deliver that?
04:11
Dr. Cynthia Gerhardt: Well I think first off, they want to know what’s happening to their child and be reassured that their child is being cared for appropriately. They certainly want to know that their child is being treated as an individual and that they’re getting the care that they need.
Dr. Mike Patrick: Right. So, they want as much information as they can get.
Dr. Cynthia Gerhardt: That’s right.
Dr. Mike Patrick: What’s the diagnosis, or how are we going to figure out what the diagnosis is and what are we going to do about it.
Dr. Cynthia Gerhardt: Do about it.
Dr. Mike Patrick: Yes. What about the realistic stuff? Do parents want to know, especially with cancer treatments or when the kid is in the Intensive Care Unit after a traumatic injury, what point do parents want to know the realistic stuff? What are the chances that this treatment is going to work or what does the long term will look like?
05:03
I mean, should doctors and nurses wait until the parents ask about that or is it something that they should be proactive in talking to the families about?
Dr. Cynthia Gerhardt: Well I think most families want to know that their child is going to be OK for sure, if that’s a possibility. In some cases, we are not sure how well the child’s going to do and so it’s uncertain. But I think they want as much honest information as possible. What we know from talking with families is that they would like to know complete information and really have a chance to absorb that and be able to make some informed decisions for their child.
Dr. Mike Patrick: Right. How well are doctors and nurses meeting those expectations in your estimation?
Dr. Cynthia Gerhardt: Well, not just in my estimation, but there is research about this as well. There are some gaps, obviously, in communication partly because it’s really hard sometimes to provide a clear prognosis or really know what to expect for how a child is going to do. But also at times, it’s just hard to deliver difficult news to families.
Dr. Mike Patrick: Right.
06:12
Dr. Cynthia Gerhardt: And they’re in a situation where they’re learning new terminology, they’re very anxious, they’re obviously worried about their child so, sometimes those conversations may happen over multiple meetings with the family before every one is on the same page.
Dr. Mike Patrick: Right. How do clinicians strike that balance, which I know that…
Dr. Cynthia Gerhardt: That’s a hard one.
Dr. Mike Patrick: It is. I mean, because you want to provide hope and yet, it’s one of those things in medicine where if you’ve been doing long enough, you see a little bit of everything. You may see a kid in a particular situation, and you’ve seen other kids in that position before who have done well and you’ve seen other kids who have not done well. You want to provide that realism and that hope at the same time. How do you figure that out?
Dr. Cynthia Gerhardt: That is really…
Dr. Mike Patrick: That’s the art of medicine.
[Laughter]
07:07
Dr. Cynthia Gerhardt: That is the art of medicine. That is a real challenge and it is very difficult to do that. I think what we know from physicians is that they say that’s really hard. They don’t always get a lot of training in how to break bad news to families. A lot of it comes from their practice and learning as they go. But families do want clear consistent communication. The majority of families do want to know what their child’s prognosis is and many of them want to know that in concrete numbers.
Dr. Mike Patrick: Right.
Dr. Cynthia Gerhardt: Many physicians I know worry about diminishing hope in families and discouraging families from continuing to try. But in fact, we find that if physicians are open and honest with families, that it does not diminish their hope and in fact creates a stronger relationship with the healthcare provider.
Dr. Mike Patrick: Sure. Doctors and nurses, and families have different styles and I think sometimes we call that “bedside manner”.
Dr. Cynthia Gerhardt: Yes.
08:08
Dr. Mike Patrick: It’s sort of is the doctor more fact-based. You know, this is the facts and sometimes seems cold but it may be just their personality. Other times, doctors are a little too personal and aren’t giving enough of the facts. How do families deal with if their style of communication is different from their medical team style of communication? How does that come into play?
Dr. Cynthia Gerhardt: I think that is sometimes hard when there’s a mismatch between the clinician and the family, but hopefully, the families will be able to advocate for themselves and be clear about what information they need and what they want from their child’s physician and the rest of the medical team as well.
But on the other hand, as healthcare providers, we also need to ask families what they need and what they want and try to adopt that to each of our families because they all are different—they do have different needs.
09:04
Dr. Mike Patrick: Yes, and I think when the family has a problem with the communication style of the physician and they’re in a crisis, it’s much more difficult for them to verbalize that there’s this issue. So, it seems like the impetus is on the doctor and the clinical team to figure out that there’s that mismatch there and adjust their style. Are doctors good at doing that or not so good at doing that? I guess it really runs gamut, huh?
Dr. Cynthia Gerhardt: I think it does. There’s certainly a broad variety of individual styles that works.
Dr. Mike Patrick: Yes.
Dr. Cynthia Gerhardt: The nice thing is that because we do work in teams with most of our families that there are multiple people on the team. And so, if a family finds it hard to talk to the physician, hopefully they can find a nurse or a social worker, someone else on the team that they can express that to.
Dr. Mike Patrick: Yes and I think doctors, especially in cancer fields, are probably a little bit better in adjusting their own style because overtime, you’re finding that families don’t like seeing you for one reason or another, you need to adjust your style or approach. And so, they probably become better at changing their style to meet what the family needs.
10:18
Dr. Cynthia Gerhardt: I think that does help. I think, primarily, most families will tell us when we’re doing our research studies, for example, that what they really want is they want to know that their child is being cared for and that they’re receiving the best care possible. But they also want to have clear and consistent and compassionate communication from their physician and the medical team.
Dr. Mike Patrick: Yes, we’ve talked about the communication between the family and the medical team. What about communication within the family?
Dr. Cynthia Gerhardt: That’s also a challenge for parents. They really are in this role where they’re kind of gatekeepers between the medical team and deciding how much information or what kind of information gets relayed to both the child who’s the patient, siblings and other family members.
Dr. Mike Patrick: Right.
11:06
Dr. Cynthia Gerhardt: I think families have a lot of challenges when they’re trying to determine how much information to give their child depending on the child’s age, how that child might cope with that information. Parents I think tend and n many ways like we might do as a healthcare provider, they may tailor that depending on the child they’re talking to in the situation.
Dr. Mike Patrick: Yes. Who would be the primary contact person to help a parent decide how much information and how to give that information to the child?
And here, I think we’re talking mostly about cancer because traumatic injury, the kid may be out of it in the Intensive Care Unit and by the time that you’re ready to talk to them about it, they’re doing better. But with cancers, there’s still this big question mark on the prognosis and how well are they going to do. Again like you say, it depends on the kid’s maturity level, their age and their personality. How does the parent — who’s the person that they ask for advice on that?
12:04
Dr. Cynthia Gerhardt: Well I think oftentimes in some of the first meetings with the medical team, they may ask, “How do I tell my child this,” or “Do I tell my child this?” Anytime a child is diagnosed with a life-threatening illness, I think that’s one of the first questions parents have.
Sometimes, that’s directed at the physician that’s in the room at the time. Sometimes, there’s the availability of psychosocial support, either a psychologist, social worker, chaplain—someone who can help them get through that part of disclosing to the child and determining how to tell them.
Dr. Mike Patrick: Sure. If you look at the families, what are the benefits of effective communication, and then on the flip side of that, the consequences of poor communication from the family standpoint?
Dr. Cynthia Gerhardt: Both with the physicians and the medical teams, I think that the benefit from getting clear and consistent communication or having a good relationship with the medical team is helpful in terms of feeling collaborative in your child’s care.
Dr. Mike Patrick: Right.
13:23
Dr. Cynthia Gerhardt: Most of these children are going to be undergoing treatment for a while and so, you want to have that relationship with your child’s healthcare team and feel like you have a say in what’s happening and being able to have informed decision making about your child’s care.
Dr. Mike Patrick: Right.
Dr. Cynthia Gerhardt: Within the family, you certainly want to make some decisions about who has a role in that decision making process as well. So, depending on a child’s age, they may be involved in some of those decisions.
Dr. Mike Patrick: Right. Sometimes, the decisions that a family makes isn’t always the decision that the medical team want the family to make. How do you approach that issue? From the doctor’s standpoint, this is really getting into the ethics of medicine as well. I know not a black and white, right and wrong answer here.
But a lot of the times, the physicians are frustrated with the decisions that a family may come up with. Is that because the doctor hasn’t done a good job in explaining their point of view or sometimes, there’s just a difference and physicians need to respect the family? What do you think about that?
14:20
Dr. Cynthia Gerhardt: Well, I think there are probably instances where both of those come into play.
Dr. Mike Patrick: Yes.
Dr. Cynthia Gerhardt: Sometimes, it is because there’s a gap in communication and families might not be understanding the situation as fully as the medical team might need them to. But I also think as healthcare providers, we do need to respect that there are differences in opinions with families, even within the families, that are challenging for them when they’re making these really difficult choices.
Families want to hear the information that we have to give them, but they also want to be respected and be able to make those decisions with that information.
Dr. Mike Patrick: Right. Yes, these were grandmas and grandpas sometimes are the instigating…
Dr. Cynthia Gerhardt: Yes.
15:04
Dr. Mike Patrick: Instigating issue. And then, from the medical team’s point of view, again, the same sort of thing, what are the benefits and the consequences of how the communication is going with the family?
Dr. Cynthia Gerhardt: Well, I think it helps improve the continuity of care if there are open lines of communication and you feel like families are understanding what’s going and we’re communicating well with them, then it feels more like a team approach.
Dr. Mike Patrick: That the parents are part of that team.
Dr. Cynthia Gerhardt: That’s right, and the child as well.
Dr. Mike Patrick: Yes.
Dr. Cynthia Gerhardt: So, I think that’s certainly a benefit—that you feel like everybody’s on the same page and we’re providing the best care for the child. When things don’t go well, that’s when it is hard and they become conflicts in communication or what families might want.
Dr. Mike Patrick: Yes, and then issues with compliance; if the family does not understand why a particular thing that you’re recommending is important. They may not do it once they go home and so, that also comes into play as well.
Dr. Cynthia Gerhardt: That’s right.
16:03
Dr. Mike Patrick: And then, liability. When things don’t go well, parents are less likely to bring legal action against physicians who they have a relationship with and so I think from the physician’s standpoint too and we have lots of doctors and nurses out there listening, it’s important to have that relationship and open communication with families so that you are the team. And then, when things don’t go as expected, whether there is really negligence involved or not, you’re less likely to get sued when you have a relationship with families.
Dr. Cynthia Gerhardt: That is true. I think families just want to know that everything was done that could have been done.
Dr. Mike Patrick: Right.
Dr. Cynthia Gerhardt: And if they feel like that that was part of the team effort, that makes a huge difference.
Dr. Mike Patrick: What mechanisms are in place to train clinicians, both doctors and nurses, at communication skills?
Dr. Cynthia Gerhardt: I think it’s hard because right now, many physicians will report that they don’t get a lot of training in medical school about delivering bad news. There have been initiatives in the past several years, that have really focused on how do we improve training and across the medical training experience and also, into when people are practicing and taking care of kids because oftentimes, what happens is you learn as you do it.
17:23
Dr. Mike Patrick: Yes.
Dr. Cynthia Gerhardt: And there aren’t really formal courses on it, but there are initiatives that are trying to improve that.
Dr. Mike Patrick: It’s kind of just into the fire…
Dr. Cynthia Gerhardt: Yes.
Dr. Mike Patrick: And experience with learning the nuances of it.
Dr. Cynthia Gerhardt: And that’s not always the best way to learn.
Dr. Mike Patrick: Yes. I remember when I was in medical school, there was a class called “The Doctor-Patient Relationship” and they would come to throw you into scenarios.
Dr. Cynthia Gerhardt: Role playing.
Dr. Mike Patrick: Yes, exactly and difficult ones. But it’s still forced and fake compared to real reactions and emotions that happen for real.
Dr. Cynthia Gerhardt: And I think physicians and all healthcare providers would tell you that these conversations are never easy no matter how many times you’ve done it, or how much practice you’ve had, or how much you’ve learned about doing it. They’re always difficult because we care about our patients and families and we know it’s hard for them too.
18:14
Dr. Mike Patrick: Yes and a lot of individual doctors, I mentioned this just having been in those shoes and just so parents out there know, a lot of times, your own past experiences really do make a difference in how you adjust your style. Just to give you an example from my own past— and this is many, many years ago so I’m not really worried about the HIPPA thing.
I had a patient when I was an intern who came in to the emergency department. It was a new onset diabetic and was two years old and the family was visibly upset and concerned and so, I really wanted to be compassionate and say, “I understand, this is not what you planned for your day today but at the same time, diabetes is very treatable. I know it’s a lifestyle change, but we’re going to get through this.”
19:06
And so, the child was admitted to the hospital. One of the very rare complications that new onset diabetics can get is that they have brain swelling when you’re bringing their blood sugar down and sure enough, this kiddo had that happen and passed away that night. And so then for a long time after that, when you see a new onset diabetic who is a little kid, it’s more difficult as the physician having experienced that to say “things are going to be OK.”
Dr. Cynthia Gerhardt: Be OK.
Dr. Mike Patrick: And so, when you do have a physician who seems like they’ve given the cold hard fact, sometimes it’s because that’s happened in the past. I saw lots and lots, way more of kids who did just fine. But sometimes, that one time it doesn’t go so well really affects the way that you present things.
Dr. Cynthia Gerhardt: It stays with you. I’ve had families tell me that they don’t want physicians to sugarcoat things. They want honest communication and they don’t necessarily always want guarantees that their child is going to be OK because we know sometimes, that can’t happen.
Dr. Mike Patrick: Yes.
Dr. Cynthia Gerhardt: But they want to know that we’re going to get through this together.
20:07
Dr. Mike Patrick: Yes, and then sometimes when you talk to families about what the risks and what can happen and you just scare them like crazy—I would be too, as a parent, in that situation. Then everything is fine and works out, and then you always think of the parents they’re like, “Why did he scare me like that?” It’s always this difficult.
What are some of the research projects in family communication that are going on out there right now?
Dr. Cynthia Gerhardt: Well, we have several projects going on here in Columbus and we’re collaborating with a few hospitals both in Toronto and Nashville at Vanderbilt Children’s Hospital. We’ve been doing some work looking at how families communicate when a child is newly diagnosed with cancer or when they relapse, looking at both how physicians communicate prognosis to families and how they do that, and what families and kids understand and how they talk to each other about these really difficult and abstract concepts.
21:07
Dr. Mike Patrick: Yes. In the research study, we look at the outcome in one group versus another group, how does that come into play with psychological research or is it different? Is it really more just trying to understand what people are doing versus what’s expected, or are you looking at outcomes of some sort?
Dr. Cynthia Gerhardt: We are looking at outcomes so part of what we believe and what the National Cancer Institute, for example, encourages is that we’re open and honest with children about their diagnosis, treatment and prognosis. But we don’t really have good research on how families do that and whether that’s good for all children.
Dr. Mike Patrick: Right.
Dr. Cynthia Gerhardt: So there are some children that it might make them more anxious or it may distress them more if we give them too much information and others if we don’t tell them, are going to worry or become upset. So, that’s a real challenge for families on how do they do that. And so, this study is really looking at really observing families in a lab talking to their child, really seeing concretely how they do that and does that differ depending on the emotional adjustment of the parent in how they cope, or the child, and does that affect their long-term adjustment.
22:21
Mike Patrick: Sure. Quality of life for the child, I guess, is really the goal of the medical team both in the short-term and in the long-term. And so, how you’re communicating with the family, how the family is communicating with itself really all impacts that child’s quality of life at that moment and into the future. That’s where this research is really trying to help families out.
Dr. Cynthia Gerhardt: That’s right.
Dr. Mike Patrick: Yes. Well, we really appreciate you stopping by the studio today and talking to us. One of the things here at PediaCast that we ask all of our guests is about board games.
Dr. Cynthia Gerhardt: Gosh.
Dr. Mike Patrick: We encourage families to do things together that don’t involve screens and as we get into the fall and winter, and more indoor activities, if you remember from your past, what’s your favorite board game?
23:11
Dr. Cynthia Gerhardt: One my family plays all the time is “Sequence”.
Dr. Mike Patrick: OK, yeah.
Dr. Cynthia Gerhardt: Which we love because you don’t have to be too smart.
[Laughter]
Dr. Mike Patrick: You’re right. This is one that’s like a board game with cards too, right?
Dr. Cynthia Gerhardt: It’s a little bit of blocking and strategy, yes.
Dr. Mike Patrick: We have that game at home and for some reason, my daughter doesn’t like it.
Dr. Cynthia Gerhardt: Really?
Dr. Mike Patrick: And she’s only played it once or twice and we haven’t played that in a long time, but whenever someone says, “Let’s play Sequence,” I think it’s a control thing for her. You know what I’m saying? She doesn’t want to play that game. Not sure if she really doesn’t like it, but if she hears this she’ll be upset at me, but anyway…
[Laughter]
Dr. Cynthia Gerhardt: Well, we have a fun time. All generations of our family play it and that’s the fun part.
Dr. Mike Patrick: Sequence? Yes. We got to live with that.
Dr. Cynthia Gerhardt: And then we gang up on each other and have teams and I think that’s part of the fun.
Dr. Mike Patrick: Sure, yes. So Sequence—we’ll add that to our list.
I haven’t actually discussed this but at the end of the year, we’re going to compile a big mega list of all the board games that folks have mentioned and I think Monopoly is in the lead right now.
Dr. Cynthia Gerhardt: OK.
24:16
Dr. Mike Patrick: But just as a list that parents can use if there might be a game that they haven’t thought of to buy and play with the family.
Dr. Cynthia Gerhardt: Well, they’re fun.
Dr. Mike Patrick: All right. Well, thanks a lot for stopping buy. I want to mention to families out there, don’t forget iTunes reviews are very helpful. Also, mentions in your blogs, on Facebook and in your tweets, and be sure to tell your doctor and your family and friends all about PediaCast so they can share it.
Don’t forget, if there’s a topic that you would like us to discuss or if you have a question for us, just go head over to PediaCast.org, click on the contact link. You can also email pediacast@gmail.com or call the voice line at 347-404-KIDS. That’s 347-404-KIDS.
And until next time, this is Dr. Mike saying, stay safe, stay healthy and stay involved with your kids. So long, everybody.
[Music]
25:17
Announcer: This program is a production of Nationwide Children’s. Thanks for listening. We’ll see you next time on PediaCast.
