Preparing Pediatric Healthcare Professionals for End-of-Life Care Discussions: An Exploratory Study

Abstract

Background:

Preparedness to initiate end-of-life (EoL) discussions is a confronting and daunting task for all healthcare professionals. We conducted a group interview to explore healthcare professionals' experiences of preparing for EoL discussions with the patient and their family in a pediatric context.

Aim:

To identify what pediatric healthcare professionals consider important when preparing for an EoL discussion.

Methods:

A qualitative design using a group interview. Two open-ended questions were asked: (1) How could preparedness to initiate EoL care discussions between healthcare professionals and the patient and family be enhanced? (2) What education resources/strategies could be developed to support preparation for EoL care discussions?

Setting/Subjects:

Healthcare professionals, including medical, nursing, and allied health professionals working in pediatric palliative care settings across Queensland, Australia. These settings included major tertiary hospitals, general practice, community, and nongovernment organizations. A convenience sample of 36 healthcare professionals consented to participate in the study.

Results:

An analysis of the data identified seven themes that had relevance for preparing for an EoL discussion: communication, healthcare professional perspectives, interdisciplinary team role, patient and family perspectives, practical issues, addressing mistakes, and healthcare professional education.

Conclusions:

Pediatric healthcare professionals confirmed that gaps exist in preparing for an EoL discussion. The findings support a need for further research in two areas. First, a systematic review of interdisciplinary resources that are available to support healthcare professionals in preparing for EoL discussions is recommended. Second, evidence-based interdisciplinary interventions to support pediatric EoL discussions need to be developed and evaluated.

Introduction

Preparing for an end-of-life (EoL) care discussion with patients and their families and/or carers requires careful planning to ensure that healthcare professionals are able to effectively and confidently conduct each unique discussion. This article examines a particularly confronting and difficult scenario for healthcare professionals: preparation for an EoL discussion with children or adolescents with a life-limiting illness. A life-limiting illness is defined as “an illness where it is expected that death, before adulthood, will be a direct consequence of the illness and therefore is expected to shorten the child's life.”^1(p.18) A pediatric EoL discussion necessarily includes the parents and may also involve other members of the family. We have chosen a broad and inclusive definition of family, meaning any person(s) who plays a significant role in an individual's life. The child's parents have a legal and moral responsibility for caring for their child and need to be partners in all aspects of the planning of care.^2(p.14) The context of pediatric palliative care has differences to adult palliative care; pediatric palliative care “embraces the whole family as well as the child, involves health professionals with specialised skills in the care of children, supports families as they care for their sick child and their other children, (and) understands the different responses by children to symptoms and their treatments.”^1(p.30)

Communicating with patients and their family is at the heart of the EoL discussion and must recognize and support the needs of patients and their families and health professionals.^3,4 Recent work related to pediatrics and young people, including the “End of life planning series”⁵ and “Difficult Conversations,”⁶ provides information on preparation for EoL care discussions. Information written for patients and families is shown to be useful for both healthcare professionals and families in preparing for EoL discussions.^1,7 For example, a review of a written resource “Caring Decisions” showed that written resources could be of significant benefit to both parents and clinicians.^7,8 The use of specific clinical tools, which draw together the key principles of guidelines, has also been shown to assist palliative care provision.^9–11 However, many existing tools are focused on clinical interventions, for example, pain management, quality of life, and EoL decision making, rather than on supporting pediatric healthcare professionals to prepare for EoL discussions. Although elements for preparing pediatric EoL discussions are discussed in the literature, healthcare professionals anecdotally report difficulty in practice. Furthermore, there is paucity in published literature describing the preparation for EoL discussions. Uncertainty in preparing for EoL discussions is compounded by a lack of targeted research addressing the efficacy of preparation interventions. The aim of this exploratory study was to identify what pediatric healthcare professionals consider important when preparing for an EoL discussion.

Methods

A qualitative design, using a group interview, was adopted to elicit healthcare professionals' experiences and opinions regarding the preparation for EoL discussions. Two questions framed the interview: (1) How could preparedness to initiate EoL care discussions between healthcare professionals and the patient and family be enhanced? (2) What education resources/strategies could be developed to support the initiation of EoL care discussions? The study was approved by the local Human Research Ethics Committee (A/15/688).

The study target population comprised specialist healthcare professionals, including medical, nursing, and allied health professionals working in pediatric palliative care settings across the State of Queensland, Australia. Settings included major tertiary hospitals, general practice, community, and nongovernment organizations. Eighty-five healthcare professionals attending a two-day Pediatric Palliative Care Education Workshop in May 2015 were invited to participate in a group interview. Potential participants were informed about the plan for an EoL discussion through the workshop program, and they were provided with written study information and a face-to-face briefing on day 1 of the workshop. A convenience sample of 36 healthcare professionals voluntarily consented to participate in the group interview that was scheduled on day 2 of the workshop.

The group interview was conducted over 35 minutes, and the data were collected by using a secure electronic application, which supported a digital “wall” that was projected during the interview. A secure link to this application was provided to all participants to use on their personal mobile devices; the link was disabled after the interview. The interview scribe posted real-time summary notes onto the digital wall during the interview. All participants could anonymously post comments during the discussion. The digital wall allowed all participants to continuously view all comments being posted as the interview progressed. Participants were invited to send any further comments regarding this information to the study team; no further comments were received.

After the interview, the data were electronically exported into a PDF file for data analysis. A descriptive content analysis was conducted to identify and describe the main content of the interview data; themes were derived from the data.¹² Study participants were provided with a summary of the findings and were encouraged to discuss any queries with any member of the study team. Consolidated criteria for reporting qualitative research (COREQ) informed the reporting of this study.¹³

Results

Participants were asked two research questions in the interview; these questions supported wide discussion. Thirty-four comments were posted during the interview. Typically, these comments were short statements. The scribe's comments, summarizing key points of the group discussion, were more extensively reported. An analysis of the data identified seven themes that had relevance for preparing for an EoL discussion: communication, healthcare professional perspectives, interdisciplinary team role, patient and family perspectives, practical issues, addressing mistakes, and healthcare professional education. Key themes, illustrated by examples of anonymous comments, are presented in Table 1.

Table 1.

Themes Illustrated by Examples of Comments Posted by Participants

Theme 1: Communication
General communication skills	It takes more than one discussion
	Hard discussions but (you have) to step up
	Importance of active listening with all five senses
	Think before you speak
	(Reflect on) where you (could) go wrong with an (EoL) discussion
	Palliative care professionals may be more habituated to these (EoL) discussions—is that good or bad?
Language	Use the right language
	What not to say, such as things happen for a reason
Cultural awareness	Cultural humility and curiosity
	Knowing the culture; being aware of cultural awareness and language, how they are used, and what is said
Managing conflict	Conflict with what is being said adds to the difficulty

Theme 2: Healthcare professional perspectives
Acknowledging anxiety	Acknowledge your own anxieties to ensure you have space for listening and observing what the family is experiencing in the complex multilayered moment
	It is okay to say you don't know and acknowledge the uncertainty of each and every case
Ability and expertise	Knowing your professional expertise, areas you lack, and when to refer and admitting when you don't know what to do

Theme 3: Interdisciplinary team role
Team prebriefing	Preparing behind the scenes
	Building strong foundations (for the EoL discussion)
	Working out who is the most appropriate person (to lead the discussion)
	Choosing who will go to the meeting
	Reinforcing the treating team's discussions
	Not (passing) the buck to another professional or group and encouraging yourself and your colleagues to have the talk, make referrals, do paperwork, etc.
Collaboratively work across settings	Being able to work collaboratively with community services and hospitals—communication can be lacking regarding prognosis
	Knowing what the previous discussions have been with the treating team
	Community—if (you) work in (the) country areas, and (there are) not many resources, e.g., medications, equipment, it would be difficult to have an EoL conversation when there are more practical issues that need addressing
Information provision	Clinical history—being aware of expectations of family
	Have an understanding of what (the) end-of-life period will look like
	Have facts correct
	Parents often ask time frames
	What key supports are there for families, e.g., grandparents, close friend, elder from community, spiritual adviser?
	To know the family from the start; it is then easier to prepare and journey with the family

Theme 4: Patient and carers
General	We have our agenda of what we need to achieve
	Be mindful of (the) importance of needs of the child and their family, including significant others
	(Appreciate) preexisting relationship(s) with (the) family
	Paradigm shift when (a patient) enters (the) Eol period—parents may not be ready; the disease progresses faster than you have been able to prepare the family

Theme 5: Practical issues
Timing of the discussion	The timing has to be right for the family rather than health professionals
	What do we do if there is limited time?
	Ask the parents: “are you ready to have this conversation about … ”
Space for discussion	Nothing worse than having to do discussions in a busy ward area, if possible (you) need to find space
Healthcare professional etiquette	Leave practitioner distractors such as mobile phones and pagers with someone else

Theme 6: Addressing mistakes
General	Acknowledge your mistakes to family (and also learn from them)
	It's OK to admit if you have said something wrong—even if not immediate, it can be helpful to acknowledge

Theme 7: Healthcare professional education
General	Have a buddy or mentor—have it as a compulsory part of the organization—understanding roles and mentors
	Use of role play can be very effective to learn techniques and practice discussions
	Simulation—filmed and then watch back—identifies things done well, things done poorly, and good in hindsight—uncomfortable to do
	If one had a magic wand, or a mentor, who could help one work out how to improve over time

EoL, end of life.

Discussion

Seven themes were identified as important when preparing for EoL discussions. These themes were generally discussed as both enablers and barriers; they were identified as barriers if they were not included for discussion in the EoL preparation. The themes were mapped to prompts in the “End of Life Planning Series” published by Together for Short Lives.⁵ This series addresses practice for healthcare professionals from care before death through to bereavement support and provided a contemporary benchmark for our work.

Table 2 given next compares each study theme with related information for practice in the “End of Life Planning Series.”⁵ For example; our study concept of acknowledging anxiety (Theme 2—Health professional perspectives) is aligned to the specific prompt “Work through your own reaction to the news before preparing yourself to share this with someone else–put aside your own “baggage” and personal feelings.”⁵ Only one theme—addressing mistakes—and two concepts from the communication theme—cultural awareness, managing conflict—could not be mapped to the prompts.

Table 2.

Study Findings Aligned to Prompts Published in the “End of Life Planning Series”: A Guide to End-of-Life Care ⁵

Study themes and concepts	Specific prompt: “End of life planning series”⁵
Theme 1: Communication
General communication skills and language	Be confident that your experience has made you an expert in how to be empathic, understanding, and able to communicate with children who are sick or dying, and their family members. (Staff supervision and support)
	Two of the concepts: Cultural awareness and managing conflict are not directly addressed.
Theme 2: Healthcare professional perspective
Acknowledging anxiety	Work through your own reaction to the news before preparing yourself to share this with someone else—put aside your own “baggage” and personal feelings. (Care before death prompt sheet 1: difficult conversations)
Ability and expertise	Have a framework for the conversation, and consider rehearsing with a colleague beforehand. (Care before death prompt sheet 1: difficult conversations)
Remember the importance of team work to provide good children's palliative care. (Staff supervision and support)
Theme 3: Interdisciplinary team role
Team prebriefing	Remember the importance of team work to provide good children's palliative care. (Staff supervision and support)
Collaboratively work across settings	Good communication and co-ordination between all relevant professionals and local services is essential to ensure that staff and their families are aware of what care is available and that they are able to make informed choices. (Care before death prompt sheet 2: advance care planning)
Information provision	Know your facts and what the issues might be. Be adequately prepared in relation to the clinical situation and the family, for example, think about what roles different people play in the family and how they process information. (Care before death prompt sheet 1: difficult conversations)
Theme 4: Patient and carers
General	Good communication is key to providing good care to children and their families, especially at the end of life. By carefully listening and responding, you can help by providing information, comfort, and understanding at a difficult time. (Care before death prompt sheet 1: difficult conversations)
Theme 5: Practical issues
Timing of the discussion	You need to make the time and space to share the information by allowing enough uninterrupted time. (Care before death prompt sheet 1: difficult conversations)
Space for discussion
Healthcare professional etiquette
Theme 6: Addressing mistakes
Addressing mistakes is not addressed.
Theme 7: Healthcare professional education
General	Always be prepared to ask for help if you need further support. (Care before death prompt sheet 1: difficult conversations)
	Get adequate supervision, as this provides a system for talking through difficult cases, sharing problems, and planning the way forward. (Staff supervision and support)

The related prompt sheet is italicized.

Although the majority of results could be aligned with previous work, the connectedness of the themes requires further consideration. Addressing mistakes is an important theme to consider and though influencing an EoL discussion, this topic could be considered a unique focus for further work. Importantly, two concepts in the communication theme—cultural awareness and managing conflict—also need further exploration. The theme interdisciplinary team role can be considered to be at the center of exploring the preparation of the EoL discussion. The theme healthcare professional education is a foundation for continually developing the interdisciplinary EoL discussion practice. The remaining four themes, communication, healthcare professional perspectives, patient and family perspectives, and practical issues, are important input requirements for supporting the preparation for an EoL discussion.

Strengths and limitations

The strength of this exploratory study is that the study sample achieved interdisciplinary representation comprising clinicians working across a range of tertiary and regional services in Queensland. A potential limitation of the study is that not all participants spoke in the interview; however, anonymous posting of comments ensured that all participants were able to have their opinions included. Results are limited to the experiences of clinicians working in palliative care services in one Australian state, and it cannot be confirmed that the data were saturated. However, results also showed that responses from these clinicians could be mapped to most of the key prompts contained in the “End-of-Life Planning Series.”⁵

Conclusion

Our study aim was to identify the areas that pediatric healthcare professionals considered important when preparing for an EoL care discussion with the patients and their families. Pediatric healthcare professionals confirmed that gaps exist in preparing for an EoL discussion. The findings support a need for further research in two areas. First, a systematic review of interdisciplinary resources that are available to support healthcare professionals in preparing for EoL discussions is recommended. Second, evidence-based interdisciplinary interventions to support pediatric EoL discussions need to be developed and evaluated. This work would potentially support healthcare professionals whose practice involves confronting and difficult EoL discussions with children or adolescents with a life-limiting illness.

Footnotes

Acknowledgments

The authors wish to acknowledge the pediatric healthcare professionals who attended the Pediatric Palliative Care Education workshop held on May 17, 2015 at the Lady Cilento Children's Hospital, South Brisbane, for their contributions. They extend their gratitude to Katrina McNamara, Director of Service Development and Improvement, Together for Short Lives, for reviewing the interpretation of the work, Together for Short Lives: End of Life Planning Series, in this article.

Author Disclosure Statement

No competing financial interests exist.

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