Medical Staff Delivering Bad News to Pediatric Families
Breaking bad news: what parents would like you to know
Abstract
Objective Breaking bad news well-nigh life-threatening and possibly concluding weather is a crucial part of paediatric intendance for children in this situation. Fiddling is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of advice of bad news.
Design A qualitative study consisting of a constant comparative assay of in-depth interviews conducted with parents.
Setting The Netherlands.
Participants Sixty-four parents—bereaved and non-bereaved—of 44 children (aged 1–12 years, 61% deceased) with a life-threatening status.
Interventions None.
Results Based on parents' experiences, the following 10 barriers to the advice of bad news were identified: (1) a lack of (timely) communication, (2) physicians' failure to ask parents for input, (3) parents feel unprepared during and later the chat, (four) a lack of clarity nearly future treatment, (5) physicians' failure to voice uncertainties, (6) physicians' failure to schedule follow-upwards conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (ten) parents' misunderstanding of medical terminology.
Conclusions This report shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns applied aspects of communication. The results provide practical pointers on how the communication of bad news can exist improved to better suit the needs of parents. From the parents' perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place.
- comm child wellness
- palliative care
- patient perspective
- qualitative inquiry
https://creativecommons.org/licenses/past/four.0/
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY four.0) license, which permits others to re-create, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. Encounter: https://creativecommons.org/licenses/past/4.0/.
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- comm child health
- palliative care
- patient perspective
- qualitative inquiry
What is already known on this topic?
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Communication of bad news receives insufficient attending in medical training.
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Physicians often feel uncomfortable in delivering bad news.
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Current studies—mostly limited to palliative intendance—evidence that parents are frequently non satisfied with the communication about their child's life-threatening prognosis.
What this study adds?
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This written report shows 10 themes (barriers and facilitators) perceived by parents with regard to bad news conversations.
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From the experiences of parents nosotros deduced practical advice on how to improve bad news conversations.
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The most important bulletin: talk with parents, even when prognosis is uncertain.
Introduction
During their years of medical training, physicians are instructed about how to deliver bad news to patients and their families.1 ii Communicating bad news—in this article divers as conversations between physicians and parents apropos their child's astringent diagnosis, limited treatment options or poor prognosis—is specially hard in paediatrics. Here, it must navigate the triangular relationship between the healthcare professionals, the parents and the child.3 Advice can have a positive or negative effect on their parents' perceptions of the decision-making process.4 v However, many healthcare professionals feel uncomfortable when delivering bad news.vi 7
The few studies that have focused on parents' experiences found a general lack of satisfaction with the style in which bad news is communicated.four 8–fourteen However, current knowledge suffers from ii limitations. Beginning, many studies focus on oncology,4 10–xv and second, they mainly focus on children who already receive palliative intendance, which in practice means that they mainly include children with a terminal diagnosis.8–10 13–15 Yet not all children with life-threatening conditions receive palliative intendance, or have been diagnosed with a last prognosis.sixteen–18 Information technology is important to understand how advice of bad news concerning children with life-threatening conditions might be improved to improve arrange the needs of parents and children. This article provides a focused qualitative analysis of parental experiences of communication of bad news, and is part of a larger qualitative interview study into care and decision-making for children (aged 1–12 years) with life-threatening conditions.nineteen
Methods
In a large-scale, nationwide qualitative study, we interviewed parents on care and conclusion-making for young children (aged 1–12 years). The themes on communication of bad news presented in this paper are the results of a focused analysis of parents' experiences.
Sample
Nosotros recruited bereaved and non-bereaved parents of children (aged one–12 years) with a life-threatening condition. Life-threatening weather condition are here defined as all medical conditions that are potentially lethal and/or life limiting. Parents were excluded when their kid had died more than 5 years prior to the interview. Recruitment was tailored to yield maximum variety in terms of condition, age, cultural background, level of didactics and place of residence. Recruitment continued until data saturation was achieved. Commencement indications of thematic saturation were observed later on 30 interviews,xx and extra interviews (12) were conducted to define maximum diverseness.
Recruitment
Report participants were recruited in the period from Nov 2016 to October 2018. Parent support groups used their online platforms to achieve potential participants, and paediatricians and paediatric palliative care teams were contacted to invite potential participants. All potential participants received total data virtually the study, were given an opportunity to ask questions before participation and gave their written consent.
Interviews
A single face-to-face, in-depth interview was held with parents, usually at their place of residence (average elapsing: 2 hours). The topic guide is added equally an online supplemental file i to this commodity. The interviews were held in Dutch, recorded on sound media and later on transcribed verbatim. Interviews were conducted by the first author, MAB (female, MA, PhD student), who had undergone formal preparation for this purpose. The participants involved had no prior relation with the interviewer, nor were they offered whatsoever grade of remuneration. Parents were free to cull to be interviewed alone or together. Emotional back up from a social worker was offered later the interview, but none of the participants used this pick.
Supplemental material
Analysis
The aim of the analysis was to provide a qualitative description of barriers in communication of bad news as perceived by parents.21 A constant comparative analysis was used.20 For the purposes of this article, we analysed those sections of the interviews that concerned the communication of bad news.
The kickoff author coded the transcripts in terms of advice-related content. All of the authors read the selected material to familiarise themselves with the content. Themes were identified past a reiterative process of comparing and contrasting interview sections, which were farther specified using Atlas.ti, a software program for coding qualitative texts.22 Coding was performed by the first two authors, and reviewed past all authors. Whatever discrepancies were discussed until consensus was achieved. The coding scheme is added as an online supplemental file ii.
Supplemental material
Regular meetings with an advisory grouping of parents, researchers and paediatricians were held to discuss the results and translate them into recommendations of intendance.
Results
We held interviews (north=42) with 64 parents of 44 children with a life-threatening condition, 24 of them bereaved. All of the children involved suffered from a diversity of life-threatening conditions. Parents were recruited from all parts of holland. Every Dutch bookish medical centre, every bit well every bit over twenty local hospitals, was represented. Details of participants' characteristics are shown in tables 1 and 2.
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Tabular array one
Children's characteristics (due north=44)
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Table two
Parents' characteristics (n=42 parent couples, a total of 64 parents were interviewed)
The experiences of parents included both facilitators and barriers, but parents were near explicit nearly the barriers to expert communication of bad news. Conversations most the (possible) death of their child were most prominent in their narratives, but their experiences on bad news conversations included other information (such as the severity or treatability of the status) as well. We identified ten themes: (1) a lack of (timely) communication, (two) physicians' failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (iv) a lack of clarity nigh time to come treatment, (five) physicians' failure to vocalisation uncertainties, (6) physicians' failure to schedule follow-up conversations, (7) presence of likewise many or unknown healthcare professionals, (viii) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents' misunderstanding of medical terminology.
Theme 1: a lack of (timely) communication
During the illness of their child, some parents seemed to exist unaware that their child might not survive during treatment. We identified four types of prognosis: (1) weather with a terminal prognosis, (two) conditions with a gradually changing prognosis (such every bit certain oncological weather), (3) conditions with an all-or-nothing prognosis (such as cardiac surgeries) and, finally, (iv) conditions where no precise diagnosis could be fabricated (this was the instance with several children with unknown metabolic conditions). Specially in the last two categories, at that place was piddling or no discussion of the possibility of death.
You just don't know what you are getting into. And looking dorsum, I do think physicians knew, I think they realized quite quickly what was happening. But we did not. Because they never told us. Possibly they didn't withhold the data on purpose, I don't know, but… (M37)
Interviewer: Looking back, do you think you would take wanted to know?
Mother: Yes, when I look at that unabridged period, I would have wanted to know information technology. Maybe not on day one, just at least a lot sooner. So we might have done things differently that final year.
Several parents recalled retrospectively that they had never been explicitly told that their child'southward time to come was uncertain or that their child might die, until presently before the moment of death.
I went to the doctor, and asked, 'Is he going to be okay?' He replied, 'well, with the right…' And then I said, 'No, I actually desire to know. I'm asking you lot.' And it turned out that there was no run a risk at all. That's when I said, 'So I don't desire all this handling for him any more than. We should take him home.' Later on that it went quickly: he died the following twenty-four hours. (M20)
In some cases, a conversation never took place because parents were referred to another hospital and physicians causeless that the conversation had taken place. Parents felt that it was important to have open up conversations nigh the child'due south uncertain prognosis. They said that parents would be thinking about this anyway, and not mentioning information technology created a taboo. They felt that information technology should not be up to parents to have the initiative in such matters, as that would make them experience that they were giving upwards on their child.
You have to have the backbone to [talk about the possibility of death]. And we were lucky to have one doctor who had that courage. I call up a lot of doctors detect that really difficult, because of who they are, and because of their preparation. (…) Merely it helps to talk, or philosophize together about decease. And of course there are limits to what is possible, but at that place are possibilities equally well, and it helps to exist open about how yous feel towards those. (F09)
The failure to hold such conversations leaves parents unprepared when the bulletin is finally delivered, and deprives them of any opportunity to make decisions well-nigh their future.
If they had told me, I would accept taken him dwelling instead, to give him a dignified end of life. (M20)
Theme two: failure to ask parents for input
Parents appreciated conversations in which they were treated as equals. They emphasised that, in conversations of this kind, they wanted physicians to take them seriously when they signalled symptoms or evaluated the child'due south quality of life. Physicians only meet small snippets of a child's life. This makes their evaluation incomplete and serves to underline the importance of a parental perspective.
They only run into [our daughter] during cheque-ups in the hospital. But she behaves completely differently there. And then they draw all kinds of conclusions near how she is doing, and I e'er feel, yes, but when nosotros become abode, everything will be unlike again. (M38)
Recognising that some people might want more information than others, some parents advised physicians to 'ask parents how they wish to be informed—Whether they want all medical information or non' (M04).
Theme three: parents feel unprepared during and after the conversation
Parents stated that they often felt overwhelmed by the conversation, considering they were not sufficiently prepared for the chat. 1 mother explained that she was given the news that her girl'southward neoplasm was terminal while she was lying in a hospital bed, recovering from a caesarean. She had been given no prior notification of this conversation, and felt overwhelmed and bereft of autonomy.
The feeling of lying there, in your pyjamas, looking upwards to all these doctors, has left such a bad taste in my oral cavity. And I remember wondering, does it really need to be done similar this? (M01)
The importance of facilities to support parents post-obit conversations was also emphasised. Several participants recall walking out of the bad news conversation and being unable to find a quiet space where they could calm down and phone call their family unit, and with no idea of how to get domicile safely in that distressed land of mind.
Suddenly we were in the main hall again, and we said to each other, 'What are we supposed to do now? I call back we should phone call some people?' We had come to the hospital by car, then I said, 'I don't think I can drive domicile right at present.' My hubby said, 'I recollect I can drive…' But having to practise that, that's just irresponsible! (M23)
Theme 4: a lack of clarity most time to come handling
The parents emphasised that, when people are informed that their child'south affliction is incurable, they should be told what to wait in terms of intendance and support.
[Subsequently the bad news conversation] nosotros went home, [with the bulletin] 'go and brand good memories with her.' Only how? I don't think we had some other appointment, or anything. For two weeks after that conversation, we had no idea what to do: Where should we get now? Who should we call? What should we do? Nosotros had to find out all those things ourselves. (M21)
Other parents had more than positive experiences, appreciating that physicians promised to be in that location for them.
What I really appreciated was that too the information nigh prognosis, they likewise said, this is what we can do for you. (…) Nosotros are going to support you through what is to come. (M15)
Theme 5: physicians' failure to voice uncertainties
Parents felt that physicians frequently found information technology difficult to talk freely in situations involving dubiety. Conversations were postponed until the details had been confirmed; in others, information that was presented as factual later turned out to be incorrect.
Just tell united states of america that you don't know. (F01)
Honesty about physicians' lack of certainty was appreciated.
[The doctor] said: 'Are you okay with a second stance? Considering I really don't know how to go along at the moment.' And I said, 'I'g but happy that yous honestly admit not knowing it, even as an proficient on this.' (M03)
Theme vi: failure to schedule follow-upwardly conversations
Several parents said that, after receiving bad news, they were immediately expected to ask questions and make decisions. This gave them no time to process the news.
Nosotros were sitting there, in forepart of 14 white coats, and they said, 'We have seen a cerebrovascular accident, what do you want?' That was the kickoff matter they asked. Without whatsoever context. (M07)
Several parents recommended that bad news conversations be carried out in two stages. The first phase would involve delivering the bad news, while the second stage would requite parents an opportunity to ask questions, or to discuss decisions. A few parents had experienced such 2-stage bad news conversations and appreciated this approach.
[A physician can] check during the second coming together, 'did they hear everything I told them?' Because perhaps they only absorbed function of the message. (F31)
Theme 7: presence of also many or unknown healthcare professionals
In several cases, bad news conversations included a grouping of physicians, many of whom were consummate strangers to the parents. Parents would have preferred a more than intimate setting.
Half dozen or 7 people came in (…) and and so they told us the news. And I just thought, 'Why are all these people here? What is the value of that? How am I supposed to react?' Everyone is looking at you lot, and of them, we only knew the neurologist. Information technology was really uncomfortable and overwhelming. (M01)
In cases where presence of several healthcare professionals was required, parents advised to introduce them and explain their presence at the chat.
Theme 8: parental concerns well-nigh how bad news should be broken to their child
Almost of the parents in the study were positive about the way in which bad news had been broken to their child. Nevertheless, some parents disagreed with physicians about how much children should be told about their illness. Others felt abased when it came to discussing illness and death with a young child. Several participants remarked that much of the information provided was targeted at children with last oncological conditions. Children themselves also had an impact on advice: some flatly refused to talk near their illness, while others were actively involved.
She would e'er know when the results of the MRI would come up back, and would pick upward the phone when the md called. She would say, 'Oh, you tin can tell me!' And the doc would have a conversation with her most information technology. (F25)
Theme ix: managing indications of bad news in non-conversational contexts
During the treatment, important messages were sometimes inadvertently conveyed past other ways: notes on a hospital bed, the waiting fourth dimension earlier the results arrived or overheard conversations. Parents stressed that healthcare professionals need to be aware of the impact of such letters.
We were notified that the MRI had been rescheduled because the neurologist was hesitant to look so long. The planners simply make a schedule and notify you. Just for u.s. it was an all-of import message. And so it would have been overnice to have a trivial more… compassion there. (M15)
Theme 10: parents' misunderstanding of medical terminology
Parents ofttimes felt that they understood what had been explained to them by healthcare professionals, but not always. An instance of the latter is provided past a couple explaining that they had never realised that the brain tumour of their daughter was in fact, a cancer… Medical terminology may non carry the same pregnant for healthcare professionals equally for parents, creating misunderstandings.
Discussion
The aim of this study was to investigate parents' experiences (barriers and facilitators) in communication of bad news. We studied this on a uniquely broad calibration, with a big number of participants, nationwide, and a representation of various life-threatening conditions.23
The narratives of parents gave insight in the various experiences of parents during communication of bad news. Some of the experiences of this group approve findings from before studies, such as the need for empathic communication,viii–10 24 25 and the importance of timely conversations well-nigh prognosis.six 18 26 27 This study shows that especially for children with uncertain prognosis (which is often true with neurological and metabolic conditions) bad news conversations were often absent.
The study adds insight in how lack of chat impedes determination-making. Decisions that influence life expectancy occur long earlier the illness is terminal. Parents expressed that they would have made different decisions if more information about the kid'due south prognosis had been provided. This finding underlines the urgency to hold timely conversations about decision-making in line with parental needs for individualised care planning.28
Parents specifically mentioned the need for honesty regarding their child'south prognosis, as an opportunity to discuss the proportionality of handling and possible stop-of-life decisions. A lack of information could limit parents' ability to make well-informed decisions near their child'south quality of life (including end-of-life decisions). In some instances, the healthcare professionals involved may feel that the parents are not ready to hear the prognosis.fifteen 28 However, they may be more prepared for the bad news than the medical staff suspect. More enquiry is needed but, for the time being, the most businesslike arroyo may exist the one put forward by the parents in the study—'Ask parents how they wish to be informed'.
Parents' wish to be seen as an equal partner in communication about bad news ties in with ongoing changes in md–patient relationships, in which the classic paternalistic model is giving way to models of shared conclusion-making.29 thirty Implementation in paediatrics remains express.31 Lack of information is a frequent barrier in paediatric shared decision-making,31 but in palliative decision-making, crucial information originates from parents. The parents' intimate knowledge of their kid can—and should—complement the healthcare professional'due south technical/medical expertise, necessitating communication. This is particularly true of conversations about quality of life and suffering. Although, in the experiences of parents in our study, this equal partnership is not always achieved, it is comforting to run across that initiatives to enhance shared controlling in paediatric palliative care are being developed.32
Our written report does accept some limitations. Showtime, it focused on young children (anile one–12), so the results may not exist generalisable to adolescents or neonates. Second, cultural differences in decision-making may mean that the experiences of Dutch parents differ from parents in other countries. Tertiary, we focused on the issues involved from the parents' perspective, which means that we cannot be certain how the bad news was delivered. Notwithstanding, people'southward experiences are central to their lives, and improving communication is, in the stop, about how advice is understood.
Determination
This study shows how parents perceive the communication of bad news. Their experiences highlight two main points. Commencement, the experiences of parents mainly business organisation very 'applied' aspects of advice: where conversations happen, who is nowadays, how they are scheduled. 2d, from the parents' perspective, communication of bad news often took identify far too late. Indeed, in some cases, no such conversations ever took place.
This study shows that parents feel a significant number of barriers in the communication of bad news. Their experiences, still, provide an opportunity to improve communication about life-threatening weather condition, for example, by being enlightened that adequate data is disclosed to parents, peculiarly in circumstances of uncertain knowledge. Parents limited a demand to be informed, even if their child's state of affairs is uncertain. This may be predictable by having conversations before long after a condition is classified as life threatening or by asking parents how much they want to know. 2nd, parents may be better prepared for the conversation by creating circumstances that empower, rather than overwhelm them—for example, by having regular i-to-one conversations. Together with our informational group we translated the themes into a list of advises to improve advice of bad news. This list is presented in figure 1.
Good advice matters. It influences skillful care,14–xvi and when parents voice dissatisfaction about their children'due south care, this tends to be about communication, rather than the purely medical aspects of care.33 34 By studying the ways in which parents perceive advice of bad news, we can larn how to improve the way in which we communicate when caring for children with life-threatening atmospheric condition. Above all, we need to remind ourselves to talk to parents about the hereafter of their child, peculiarly when the prognosis is uncertain.
Acknowledgments
The authors would like to thank the participants for sharing their stories, the members of the informational grouping for their help in shaping the study, Veerle van de Wetering for her help in shaping the study, and conducting the analysis, and Suzanna Miedema-Wilsterman for her efforts in recruiting participants for this study.
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