Abstract
Abstract
Background:
Delivery of bad news is a challenging task for physicians and other health care professionals. Several studies have assessed parental perceptions of the delivery of bad news, but none have focused on the role of physicians' interpersonal behaviors in the communication process.
Objective:
The study's objective was to assess parental perceptions of physicians' interpersonal behaviors and their role in communication of bad news.
Design:
The design was a cross-sectional qualitative interview study of 13 parents of patients hospitalized or previously hospitalized in the pediatric intensive care unit or oncology/bone marrow transplant unit at an academic children's hospital.
Results:
Eleven interpersonal behaviors were identified as important by parents. The majority of parents identified empathy in physicians as critical. Availability, treating the child as an individual, and respecting the parent's knowledge of the child were mentioned by almost half of parents. Themes also considered important but by a smaller number of parents were allowing room for hope, the importance of body language, thoroughness, going beyond the call of duty, accountability, willingness to accept being questioned, and attention to the suffering of the child.
Conclusions:
To increase parental satisfaction and enhance the parent-physician therapeutic partnership, we recommend that physicians consider attending to the 11 interpersonal behaviors described in this manuscript, and that educational programs pay particular attention to these behaviors when training health care providers in the communication of bad news.
Introduction
In pediatrics, communication becomes more complex due to the nature of the physician-parent-child triad, the influence of the child's developmental and cognitive status, and the potentially conflicting needs of the parents and the child. 3 Little original research has been conducted to develop or compare strategies to convey difficult news regarding a child's medical condition. A few studies have assessed parental responses to difficult news in the context of specific clinical diagnoses and identified some physician interpersonal behaviors (e.g., showing empathy, allowing parents to talk) that parents believed contributed to a good communication process.4–11
Additional research is therefore needed to identify the full range of interpersonal behaviors deemed important by parents. We designed the current study to assess in detail parental perceptions of a physician's interpersonal behaviors when delivering bad news regarding their child.
Methods
In this cross-sectional study, qualitative interviews were conducted to solicit in depth stories of parents' experiences communicating with physicians about bad news at an academic pediatric tertiary care center. A convenience sample of parents of 13 children who were or had been hospitalized in the intensive care unit or on the oncology/bone marrow transplant ward were approached for the study if an attending physician from that service agreed that the parent was likely to have participated in a difficult discussion in the past regarding diagnosis or prognosis. To the degree possible in a small sample, diversity in patient age, gender, race, and diagnosis was intentionally targeted. Parents were interviewed in conference rooms in the hospital, unless they preferred to conduct the interview in their child's room.
The interviews were conducted by three of the investigators (MI, WEM, LSK) initially in pairs to insure consistency of technique and later singly. Informed consent was obtained from parents. The study was approved by The Children's Hospital of Philadelphia institutional review board.
Interviews began with open-ended questions soliciting stories of experiences receiving difficult news, with prompts to encourage specific descriptions of clinician behaviors if the parents did not volunteer these spontaneously. When generalities were offered, specific examples of experiences were requested. The parents were allowed to self-identify what constituted “bad news.” Interviews continued until preliminary content analyses suggested that no new themes were emerging from the interviews (i.e., thematic saturation), 12 which occurred after 13 interviews.
The interviews were analyzed and, based on the grounded theory approach to qualitative analysis, 13 themes were generated and analyzed using NVivo 9 qualitative analysis software (QSR International, Victoria, Australia.) 14 Our approach to qualitative data analysis involved close readings of the text to identify themes, followed by the development of a preliminary set of codes. The coding scheme was constantly reviewed as additional transcripts were added to the database. The primary coder was not involved in the interview process and, consistent with standards of qualitative research, 15 the reliability of the data was addressed by having a second coder for a subset (n=4, 33%) of the transcripts, using the coding structure developed by the first author. After resolution of discrepancies, emerging categories were shaped into a list of physicians' interpersonal behaviors, which were valued from the participants' perspectives.
Results
Approximately half of the children whose parents were interviewed had cancer, while the other half had cardiopulmonary, renal, or neurologic conditions that led to their being in the ICU. Education level of the parents ranged from a high school education to completion of a postgraduate degree. Of the 13 parents interviewed, 12 (92%) were mothers, 10 (77%) were Caucasian, one (8%) African-American, one (8%) Asian, and one (8%) mixed race. One parent self-identified as Hispanic. All parents were interviewed individually, although joint interviews were offered. The children ranged in age from infants to 18 years old. One parent was interviewed during his child's first hospitalization, but most of the children had been hospitalized multiple times.
Presence or absence of 11 interpersonal behaviors of physicians was identified (see Table 1). Representative quotes from parents are discussed under each behavior.
Empathy
Empathy, mentioned by all but one parent, was perceived as the ability of physicians to relate to the feelings provoked by bad news in patients and parents:
You could tell it had impacted the doctor, he looked sad and upset too.
Absence of empathy was described as very disturbing to some parents:
One particular doctor was very blunt, he was frustrated with me for asking a few questions. And he said, ‘We don't know if he's going to live or not—and he just walked away. That was very disturbing.
Not all observations regarding lack of empathy were so drastic. One parent acknowledged lack of empathy as something that may need to be accepted as part of a physician's personality, but nonetheless as a negative quality:
He didn't have that personable side to him. That's fine and he might be a brilliant doctor but I think to be a phenomenal doctor you have to be the whole package. You have to have that side to you that says I care about you as a person, I care about your child.
Availability
Availability, as described by the participants, ranges from being easy to reach to making an active effort to be physically present as much as possible:
When my son was in the PICU there was a resident who was excellent. She was in here many times explaining things step by step. So the personality comes through, like in a crisis…they would always check in and make sure that I had my information, and they really care.
Treating child as an individual
Several parents in our sample valued the human connection between clinicians and their children. They appreciated when physicians actively sought to establish such a connection:
They come in and they greet my son and they warm up to him—that makes me feel much more comfortable, because their first interest is…is him…is the patient, and to me he's my first interest too…. Some of the doctors will come in and they'll notice the books he's reading, and they try to build a rapport with him first. I think that's really important and I know my son really likes that.
Respecting parents' knowledge of child
The theme of respecting the parents' knowledge of the child arose as a combination of the willingness to listen to parents and to incorporate their knowledge in the formulation of diagnosis and plan:
They've all been really good about including me in rounds…. They ask my opinion and if I have any other issues I want to bring up they're very open to that.
The absence of this quality was upsetting to eight parents:
The parents don't feel that the physicians listen to them, they don't feel that the physicians give them credit for wanting to learn.
Allowing room for hope
More than a third of parents noted that allowing room for hope was important. Sometimes this meant supporting an expectation of cure:
He started talking about what they were going to do for our son. He said, ‘Of course he's going to live, there's so much we can do for him.' And that was just like the weight of the world had been lifted off our shoulders.
Even with an uncertain outcome, assurance that everything possible will be done can provide hope:
We're going to do everything we can—that reassurance and giving people hope is really important…or something that puts it more into the positive because as a parent again you want that reassurance. Even if it's just a slight glimmer of hope you…you need that to hold on to.
Body language
Five parents commented on the importance of body language, with smiling and eye contact as the most common elements of nonverbal communication deemed important. Four parents expressed appreciation of empathy expressed by physical contact:
And she was in the room and she came over and she gave me a hug, and she was like I am so happy I…I've never seen him clap, and I was like he's never done it, this is his first time, and she shared in that joy with me and that was great…. There's so much that goes into someone's personality and being approachable: it's body language, it's tone of voice, it's the facial expressions, the sincerity you see on their face when they're speaking with you. It's all of that rolled into one, it's not just one thing.
Thoroughness
The ability of physicians to perform their tasks with care, attention to every detail, and completeness, was acknowledged and greatly appreciated by parents. Thoroughness included taking time to try different management strategies, wanting to verify the assessment of another physician, and being proactive by reading the chart:
He was in here every day trying to figure out ok what was wrong…. He changed his ventilator settings, he tried different ways of handling to make my son better. I have a lot of confidence in him.
Lack of thoroughness was frustrating for some parents and affected their trust in physicians. In one example, a parent of a child complained about a resident not taking the time, at the beginning of his rotation, to familiarize himself with the child's complex medical facts, while at the same time praising the other residents who had done so:
For him to come up with such simple answers for such big problems tells me that he does not know what is going on. Or he hasn't taken the time to learn or he is not willing to come in and talk.
Going beyond the call of duty
Some parents appreciated their physicians showing how much they cared by going above and beyond:
My daughter had an emotional breakdown last week, because it was a misunderstanding—the charge nurse said something in front of her that she shouldn't. She felt that she was being kicked out of the hospital and her feelings were hurt. You know and Dr. One went above and beyond to make sure that she knew how much he loved and cared for her…. He stayed the whole time and answered our questions.…It was 10:30 on a Friday night too, it wasn't in the middle of the day.
Accountability
Parents valued when physicians took accountability for their actions and disclosed medical errors to parents in an honest way:
Our son was given an accidental overdose in the operating room and went into cardiac arrest. What we liked is that they told us exactly everything that happened and the doctor actually did not place blame on anybody. He took full responsibility for all of it.
In contrast, a lack of accountability could lead to distrust and dislike of the physician:
Dr. Six from surgery is not allowed near my kid. He almost killed her during a central line placement, and never took accountability. He never apologized to this day. Nothing. He blamed my daughter who was unconscious on the table.
Willingness to accept being questioned
One parent expressed her gratitude towards her physician for not being upset about her wanting a second opinion about the child. The parental perception of that situation was of a deep personal investment of the physician.
Since he was 18 at that time, I said to his pediatric oncologist that I thought I should get a second opinion from an adult oncologist. She was awesome, she was just like absolutely I would do the same thing. And she made the appointment for us.
A physician not accepting being questioned, on the contrary, was perceived as a major shortcoming:
I think a doctor being offended when you question him is a big thing. You know we've had that, not here thankfully, but had that in the past.
Attention to suffering of child
Parents perceived physicians' attention to the suffering of the child by taking active efforts to treat or prevent pain as an important aspect of communication:
My doctor is very sensitive to how many times you stick a patient.
Understandably, challenges in communication related to addressing the child's pain were upsetting to parents:
One day my daughter was in terrible pain and I felt nobody was really doing anything about it.
Discussion
A variety of factors may influence delivery of bad news, whether related to the disease, the family or the patient, the health care provider, or the situation. Some factors are beyond the control of the health care provider. On the other hand, the way the health care provider chooses to deliver the bad news is modifiable through training and behavioral learning. 16
A number of interpersonal behaviors were identified as important by parents in our study, with wide variations in physicians' interpersonal behaviors noted as well. Prior qualitative studies, although not specifically focused on the interpersonal domain, had identified some of these behaviors (or the lack of such behaviors) as important in the delivery of bad news in pediatrics.4–9
The majority of our subjects identified empathy as critical, and many had experiences with physicians displaying a lack of empathy. Of note, unlike other behaviors (like going beyond the call of duty, whose presence was deemed desirable but whose absence was never mentioned), when an absence of empathy was mentioned, it caused an intense dislike and distrust of the physician in most cases. In a previous study, lack of empathy was described by parents as related to bluntness, dumping of information, no assessment of recipient's understanding, and use of technical terms. 4
One of the easiest ways to express empathy is an appropriate use of body language, which is another theme identified in the analysis. Smiling and eye contact were the most common elements of nonverbal communication mentioned. In a prior observational study, patient satisfaction was higher when physicians smiled, displayed eye contact, leaned forward, had an expressive tone of voice and face, and gestured more. 17
Availability, treating the child as an individual, and respecting the parent's knowledge of the child were mentioned by almost half of parents. One previous study of parental reactions to the diagnosis of leukemia identified availability as an important behavior, in that parents appreciated when the doctor offered opportunities for later repetition of information that was too hard to take in and digest all at once. 10 Our study confirms the importance of making an active effort to be physically present as much as possible, repeating information already delivered, and offering opportunities for additional questions.
Parents appreciated the human connection when clinicians treated their child as an individual. This theme related to empathy, but also has other important implications. In one study of communication of the diagnosis of pediatric cancer, the connection between physician and child helped teenagers engage in their own care. 18 No matter what the age of the child, building a rapport and open communication allow clinicians to provide comfort and reassurance as well as help children know what to expect. Related to treating the child as an individual, attention to the suffering of the child was mentioned by a minority of parents, who clearly recollect how physicians paid (or did not pay) attention to the presence of pain.
The theme of respecting the parent's knowledge of the child is related to the willingness to build a partnership with parents by incorporating their knowledge in the formulation of a diagnosis and plan. This theme describes the concept of shared responsibility in decision making, which is increasingly recognized in both adult and pediatric medicine. 19 A related theme is the willingness to accept being questioned, which was perceived very positively by a few parents.
The theme of allowing room for hope could be identified with an active effort of maintaining a positive attitude even when communicating dismal news. Several of our parents described as important supporting an expectation of cure, or, when facing an uncertain outcome, assurance that everything possible will be done. This should not be confused with supporting unrealistic optimism or false reassurance, which may lead to disappointment if the events do not unfold as expected. On the contrary, in a study of pediatric palliative care patients, it has been shown that children of parents who were more hopeful were more likely to have subsequent limitation of intervention orders enacted. It is possible that higher levels of hopeful patterns of thinking increase parental propensity to consider a broader array of possible goals of care. 20
Thoroughness was acknowledged and greatly appreciated by parents, who considered it an element of professionalism, as previously identified in a systematic review of qualitative studies on preoperative communication. 21 Its absence, as in the case of empathy, was a major cause of frustration and distrust. Parents also valued when physicians took accountability for their actions, particularly in the case of medical errors, and appreciated an honest disclosure, especially when accompanied by an apology. Although this theme was mentioned by several parents spontaneously, the disclosure of medical error was not a specific focus of this study.
An important set of limitations of our study is intrinsically related in several ways to the method of qualitative analysis of interviews and its potential for bias. First, parents were interviewed months or years after the bad news was delivered, with a possible recall bias related to the traumatic nature of the bad news, causing them to remember only some aspects of the interaction and not others. Second, although we were extremely careful in formulating our questions in an open-ended way, it can be difficult for an interviewer to maintain detachment from the interviewee, and this may have encouraged some parents to expand more on some topics. Third, some important topics may have been missed because they were not elicited by the interview. Fourth, the process of coding is somewhat subjective and influenced by the background and beliefs of the coder, although we attempted to minimize this subjectivity by having a second investigator code a subset of the interviews to identify discrepancies.
Additionally, some of the findings of our study may only be valid for some disease processes and not others, and interviewing parents of children with other conditions may have yielded different results. The number of interviews, although small, is similar to the number typically needed to reach thematic saturation in other qualitative studies.22,23
Future directions of our research will entail different study designs, such as interviewing the parents immediately after the delivery of bad news, using interviewers and coders who do not normally work in the medical field to minimize professional bias coming from having been the bearer of bad news in the past, or designing multi-institution studies to have different cultural and institutional backgrounds represented, as well as a vast array of different medical conditions in different stages of the disease process.
Conclusions
The opinions of the parents included in our sample regarding physician behaviors in communicating bad news can provide some insight to clinicians who participate in these conversations. Parental perspectives could also be incorporated into evidence-based educational programs for medical students, residents, fellows, and other health care professionals. We believe that, through institutional and personal effort, the practice of delivery of bad news can become an evidence-based skill, with measurable benchmarks such as parental satisfaction and adjustment.
Footnotes
Author Disclosure Statement
No conflicting financial interests exist.