Abstract
Abstract
Background:
Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps.
Aim:
We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation.
Design:
A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital.
Setting/Participants:
Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study.
Results:
Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes.
Conclusions:
The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
Introduction
D
Written resources articulated in simple nontechnical language could enable parents to process information at their own pace and better enable them to raise issues important to them with their child's health care team. In adult intensive care, written resources for families have been found to have a positive impact on the comprehension of medical facts relating to diagnoses and treatment 18 and on families' ability to deal with distress after the death of a relative. 19 Parents who have faced EoL decisions have indicated that information needs to be repeated, as it is understood and processed incrementally. 20 Written resources could help parents better understand information. However, there are currently limited reliable independent sources of written information,21–23 and there are no existing resources for parents that address the complex ethical questions involved in EoL decisions.
The Caring Decisions handbook 24 and associated web-based resource 25 were developed specifically to fill these gaps. This paper provides insight into the development of the resources, modifications after reviewer feedback, and findings from initial pilot implementation.
Methods
Targeted literature review
We conducted a literature search and undertook a meta-synthesis of predominantly empirical research that discussed factors that are helpful and unhelpful in parental EoL decision making. 26
Development
The drafting of sections appropriate for a shorter hardcopy handbook and longer web version commenced in parallel in February 2013 and was completed in September 2013. Materials were reviewed iteratively by members of a multidisciplinary team with expertise in neonatology, pediatric palliative care, social work, bioethics, and linguistics. Permission was sought from parents who had been interviewed as part of a previous research project 27 to use some of their quotations in the resources. The parents were also invited to review the draft material.
Consultation phase
Draft versions of the handbook were distributed to parents who had made EoL decisions and had experienced the death of a child, medical practitioners (including neonatal and pediatric intensive care clinicians, palliative care physicians), indigenous family support workers, nurses, bioethicists, parent support organisations, and international clinical experts.
Initial evaluation
A pilot evaluation study commenced at an Australian capital city hospital and involved the neonatal and pediatric intensive care units and the children's palliative care service at that hospital following ethics approval from the hospital ethics committee. The study received ethics approval from the hospital ethics committee in early September 2013. Information sessions commenced in late September 2013 and were repeated in February 2014 to ensure that health care professionals were familiar with the research. The hardcopy handbook was made available to the units along with pertinent research information. Permission to disseminate the hardcopy handbook as part of routine care was sought from departmental heads. Health care professionals were asked to distribute the handbook to parents with whom they were having EoL discussions, where appropriate. Parents were invited to meet with the research team and undertake an interview in person within a short time following EoL discussions. For infants or children who had died, interviews were planned to be delayed for six weeks. Data were collected via parent and clinician interviews and were transcribed thematically.
Results
Literature review
We found limited literature specifically on written information needs for parents facing EoL decisions for their child. We therefore reviewed factors identified by parents themselves as supporting or impeding EoL decisions 26 with a view to addressing these needs in the resources we were developing.
Development
We developed a printed handbook in question/answer format also containing parent narratives describing their experience with EoL decisions for their child, example questions parents can ask, and a notes section. The content of the handbook was guided by the results of the targeted literature review, and by clinical experience in talking with parents in these sorts of situations. Table 1 illustrates how the literature was used to address parental needs in the handbook. The handbook was brief so that parents would not be overwhelmed with detailed information at a time when they were first considering EoL decisions for their child. A longer web-based version was also developed in question/answer format and provided more detailed responses, narratives, and material from parents.
Consultation process
Twelve responses were received from national and international health care professionals (including two who provided perspectives of different faiths), parent support groups, and indigenous family support workers and six from parents who had themselves made EoL decisions. The feedback was overwhelmingly positive (see online Supplementary Table S1 at www.liebertpub.com/jpm and at www.liebertonline.com), and some reviewers had few suggestions to make, as they felt that the resources were of a high standard. Other reviewers made experience-based suggestions on a number of aspects such as content, linguistic features (format, length etc.), impact of the materials on readers, and more general comments. The resources were modified in light of the reviewers' suggestions. One reviewer raised the issue of whether there was appropriate balance in the information, which we then further considered. 61 The final topics included in the web resource, after the consultation process, are displayed in Table 2.
Pilot evaluation study
In total, the handbook was offered to 12 families (see Table 3). Of these 12 families, two parents of children with life-limiting conditions from two separate families were interviewed and no parents of children who had died were recruited. In addition, six clinicians provided feedback via face-to-face interviews.
The low numbers were partly due to the low rate of EoL discussions at the participating hospital units during the recruitment period, which ran from October 2013 to June 2014. For example, in one of the intensive care units of the participating hospital, five babies died between October 1, 2013 and June 30, 2014 compared to the corresponding period in the previous year during which 11 babies died.
Key themes—Parent feedback
The parents interviewed used the resources in different ways. The father accessed only the hardcopy handbook and read it numerous times while the mother read the hardcopy handbook once and accessed the web resource later. Both parents felt that the resource was helpful, particularly the parent narratives.
“… they were in the same boat as me … I really liked reading about some of the experiences that other parents have had in the past …”
“I suppose given the situation, you don't know what to expect so when I read it, yeah, trying to get an idea of what other people have been through and that.”
Both parents resorted to reading the resources to cope with the difficult and uncertain circumstances they were faced with. They got a sense of what to expect in the future, and the mother reported feeling better emotionally prepared for future decisions for her child after reading the resources, and less afraid of the unknown.
“… To be honest with you, that's what scares me the most as a parent—like not knowing what to expect. … Look, for me I was grateful [to have read the resources] because I like to feel—not in control, but I like to feel organized enough that I'll be able to cope with the situation when it arrives.”
For the mother, reading the resources alleviated her sense of guilt about decisions made.
“I personally, I feel like I'm giving up on him … But … [the handbook] clarified that it's quite normal to feel that way. … That helped me because that's something big that I'm dealing with, … that guilt.”
Both parents found the material easy to understand, relevant, and felt the material covered the most important issues. Difficult and confronting information such as the description of extubation, was felt to have been conveyed sensitively and ‘tastefully.’ The father would have liked material on caring for his child at home.
The conflict between strong opposing interests was also covered in the resources. The mother was helped by reading parent quotations about this and content on the challenge of recognizing and disentangling opposing interests.
“… there was one quote in there where you have to draw a line in the sand and if they step over that line you know that there's no coming back from that sort of thing. You have to let them go for their own good, not just because you want them here and stuff like that.”
Neither of the parents accessed other resources to help with decision making and “Caring Decisions” was not relied on for decision making, as the mother had made decisions with health care professionals before receiving the resources, whereas the father was guided by health care professionals.
Key themes—Clinician feedback
Clinicians felt the resources would empower parents. The resources clarified medical terms and aspects of care that are often not understood adequately as well as parental concerns that do not necessarily immediately arise in clinicians' thinking. Clinicians felt that the resources were of a high standard and that they addressed a wide array of difficult issues accurately, sensitively, and in sufficient breadth and depth. The content was considered to be true to life while also analyzing important ethical issues in an accessible manner. The inclusion of real-life narratives and topics such as guilt, loneliness, conflict with family etc. were seen as very helpful (see Table 4 for more quotes).
“I think because each section has a couple of ideas built into it I think that's not confronting in that sense then. So it lets people sort of gently see where it's trying to go.” Clinician-2
“I love the way it gives it all to the parents and gives them the right words to use and how to engage and all of that … because of that engagement process I think it gives parents tools that they can then go and ask the doctors questions …” Clinician-5
The content and the parent narratives were viewed as valuable in reducing the sense of isolation that parents sometimes experience. The resources were also seen as potentially reducing parents' sense of powerlessness and guilt associated with making such difficult decisions for their child despite the well established shared decision making models now adopted in most contexts.
“… I think that there is a lot of things in there that probably answer a lot of their questions and could potentially alleviate their feeling of guilt, to say they've done the right thing by looking at other people's experience.” Clinician-6
Although the resources were developed primarily for parents, clinicians felt the topics had sufficient breadth and depth and would be useful to clinicians. Five clinicians saw great benefits in their use in training and provided some insight into the ways the resources could be used to assist in developing less experienced clinicians' understanding and expertise.
“I would happily use this as a resource in training our own trainees … Because it is quite a lucid exposition of the problems, with the perspective of parents …” Clinician-3
The inclusion of questions parents can ask clinicians was considered valuable, as they enable clinicians to consider their responses in advance.
“… I found it nice to actually go through the resource and look at some of those issues … the questions that might come up and how I would handle those questions as well … So it helps me prepare for such a conversation as well. ” Clinician-5
Two more experienced clinicians felt the resources were not particularly useful to them personally. However, one felt that the resources would be beneficial to other specialities and subspecialties caring for children with ongoing life-limiting health conditions.
Barriers to dissemination
Certain factors led to difficulties in disseminating the resources during the study. For example, clinicians referred to the unusually low number of children suffering from life-limiting conditions in the second half of 2013 and first half of 2014 as a factor. Some clinicians held reservations about having EoL discussions and simultaneously broaching the topic of research and consequently did not distribute the handbook. One clinician expressed concerns about such resources delaying decision making and disrupting clinicians' efforts to obtain parental consent, but another recognized that delayed decisions are usually better ones. Difficulties ascertaining the appropriate timing for distribution of the handbook were also noted.
“I think that it is hard to actually give out the book and talk about research in the same …” Clinician-1
“I think it might [delay decision making], but at the end of the day I think it would end up being a better decision. I think we don't realize the long-term impact on families about decisions that we make quickly and we move on and we forget that …” Clinician-5
Resources
One clinician made specific comments on the existing layout, content, and style and suggested placing the first real-life narrative later in the handbook, as parents might find it confronting. It was noted that there was no material for children old enough to participate in discussions about their own life and another noted there were no narratives regarding ‘messy’ discussions where there was disagreement about decisions.
Discussion
Deaths in pediatric and neonatal intensive care usually result from decisions to withhold or withdraw treatments,62–65 and parents rely on information from clinicians in their decision making. Similar decisions may be faced outside the intensive care unit, for example, for children with life-limiting illness in the inpatient or outpatient setting. Written resources to assist with clarifying the ethical aspects of such decisions, among other issues, are unavailable for parents and limited for clinicians. 66 A preliminary literature review revealed that the written resources that do exist for parents address some important issues around EoL21–23 but do not explore in great depth a number of issues important in EoL decision making. An important issue for parents to understand, for example, is how and why disagreements arise in the context of EoL discussions and decisions. Unlike such publications, the focus of “Caring Decisions” is on providing information that will assist parents in EoL discussions and information on issues parents weigh up when making decisions about withdrawal/withholding treatment for their child. We adopted an evidence-based approach to the development of the resources taking into account the literature on parental communication needs, as expressed by parents themselves.
This paper outlined the development and initial piloting of written resources for parents facing EoL decisions. Feedback during consultation and piloting was overwhelmingly positive and identified an additional potential role for such resources in training health professionals in communication and EoL decision making.
Parents were very supportive of the resources and found all of the features appropriate including the content, language, tone, presentation and layout. They felt they had benefitted from reading the resources, particularly because these provided insight into others' experience and prepared them for the future. The importance of having an understanding of what to expect has been highlighted by parents in previous research. 67 The information in the resources was considered easy to understand, honest, gentle, and tasteful in its approach to difficult content. Honest information, even about dire circumstances, is important for parents,43,45 and they have reported that candid and simply expressed information leads to them feeling more in control.44,68 A sense of control is important in such contexts, as it contributes to a reduced sense of hopelessness. 68 Similar positive feedback was obtained from bereaved parents during the consultation process.
Clinicians who provided feedback during the consultation phase and the majority of clinicians interviewed during the pilot evaluation were extremely supportive of all features of the resources including content, language, tone, presentation, and layout. The resources were welcomed by almost all as a valuable tool of benefit to parents, experienced clinicians, and trainees. Most clinicians acknowledged directly or indirectly that the resources would play a positive role in clinician/parent communication. Many particularly liked the questions and phrases provided for parents, as they recognized that these empower parents, who often simply do not know what to ask to obtain further information.33–35
The low level of dissemination of ‘Caring Decisions' to parents during the study was a limitation of the pilot evaluation. One barrier was the low number of EoL discussions during the study period. Another important barrier was that clinicians appeared to struggle with the appropriateness of discussing research relating to the resource even though they recognized the value of such research. One clinician found that initial concerns about introducing the research were unfounded when parents were approached. Despite their serious circumstances, parents willingly participate in research and see benefits in doing so.69–71 As one of the parent-reviewer's noted, the development of such resources and associated research, “ … means that my daughter's battle to live does not go unnoticed to the professionals.”
The difficulty clinicians had identifying the appropriate time to give the resource may relate to the complexity and sensitivity of the discussions and may potentially arise from the fact that the concepts of withdrawal or withholding of treatment are introduced indirectly and gradually. Parents have expressed the need for information to be discussed only if parents wish to receive it and when they are ready to receive it, 31 as too much information can be unwelcome or can arouse fear in parents. 72 The clinician recommendation in the evaluation study to move the first narrative to a later section of the hardcopy handbook addresses such concerns, as some parents may not yet have reached the stage of considering EoL decisions. Assessing parents' readiness for receipt of information lies squarely within the realm of the clinician/parent relationship where judgements about a range of issues and the content of communication are routinely made.
The majority of clinicians interviewed expressed their enthusiasm at using the resources in the future and felt that the resources would have a positive impact on parents and clinicians and would facilitate and deepen EoL discussions.
Conclusion
Written resources to support parents facing EoL decisions were very well received by both the consultation panel and participants in the pilot evaluation study. Despite the low dissemination rates during the study, all aspects of the resources were commented on positively and no aspect of the resources was considered inappropriate. Even though introducing EoL concepts to parents is challenging and the best timing for providing this resource was sometimes difficult to ascertain, clinicians and parents alike appreciated the open, honest approach adopted in the resources. The fact that the resources approach these difficult topics, which some clinicians may hesitate to raise and which some parents may not dare voice, is hoped to provide the opportunity for greater discussion of issues which the literature informs are very important to parents. A further evaluation study is currently underway and will reveal more details about the impact of such a resource on parents' and clinicians' perceptions of EoL discussions.
Footnotes
Acknowledgments
We would like to acknowledge the assistance provided by Dr. Steve Keeley and Professor Annette Braunack-Mayer in the design of the study. This work was supported by funding from a Channel 7 Children's Research Foundation Grant [13776]. DW was supported for this work by an early career fellowship from the Australian National Health and Medical Research Council [1016641] and in part by a grant from the Wellcome Trust [086041/Z/08/Z].
Author Disclosure Statement
The authors declare that they have no conflicts of interest.
References
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