Commentary by Dr Megan Doherty, Children’s Hospital of Eastern Ontario and Roger Neilson House (pediatric hospice)
Feature Articles: Breemen, C., Johnston, J., Carwana, M., & Louie, P. (2020). Serious Illness Conversations in Pediatrics: A Case Review. Children, 7(8).
“The way you tell the truth to families makes a huge difference…if you know the person that’s coming in there and they’re telling the truth, as hard as it is, but you know they care about you and they love your child, it’s okay. As hard as it is, it’s okay and it makes all the difference.”
Bereaved Parent (1)
Skillful Communication for Children and Families
Skillful communication is a cornerstone of high-quality clinical care, both within the field of palliative care, as well as in medicine more broadly. Despite this, it can be difficult to define the practical skills and real-world competencies which are required to provide high quality communication. A framework which supports clinicians to address key concerns and topics in serious illness can ensure consistent communication from health care providers. Using a framework can also ensure that the family’s concerns are addressed and supported. Training of medical learners in communication skills is a critical component of medical education and one which requires considerable time and practice to master. High quality communication training can improve the acquisition of these skills.
The Serious Illness Conversation Guide
Recently, Ariadne Labs, a Joint Center for Health Systems Innovation (Boston, MA, USA) has developed the Serious Illness Conversation Guide (SICG) to assist clinicians to understand patients’ goals, share prognosis and responds skillfully and sensitively to emotions (2). The SICG is unique as it has been developed to promote conversations that focus on the patients’ goals and values to ensure quality of life, based on what seriously ill patients report is important to them (3). In 2017, this guide was adapted by specialist palliative care clinicians at Canuck Place Children’s Hospice (CPCH) for use with parents of children with serious illness (4). Adapting the guide to pediatrics was important to ensure that the guide incorporated family-centred language, addressed parents’ role as primary decision makers, while addressing the variability in the child’s level of development and the uncertainty of prognostication in children, particularly those with rare diseases. The guide is taught to clinicians during structured workshops which include personalized coaching and mentorship.
Personal Experience with SICG:
My personal experience with the SICG-Peds began in 2018, when Camara van Breeman came to Ottawa to provide SICG-Peds training for clinicians at the Roger Neilson House (RNH) and the Children’s Hospital of Eastern Ontario (CHEO). After this initial series of workshops, I have been part of a core team, who has trained more than 150 front-line clinicians. Our team has worked with the leadership at RNH and CHEO to strategically train staff in key areas where enhanced communication skills are needed, including oncology, complex care, neurology, emergency medicine, and pediatric and neonatal intensive care. We have also found that implementing these workshops has strengthened the connection and integration of palliative care into these clinical areas.
In my personal communication practice, I have found that the SICG-Peds provides a consistent family-centred approach which encourages exploration of key topics and assists me as I guide families in making care decisions for their children. As someone who frequently conducts serious illness conversations, I was surprised to find that the tool allowed me to better explore goals of care than my usual approach and improved my understanding of the perspectives of parents. I have observed how this consistent approach also enhances communication between clinical teams.
In addition to these experiences in Canada, I have also provided SICG training to pediatric palliative care clinicians in Hyderabad, India, in partnership with Two Worlds Cancer Collaboration (a Canadian charity). In this setting, the SICG has been translated into the local language (Telugu). In 2019, Dr. Gayatri Palat, a senior Indian palliative care clinician, and I shared the SICG with a wider Indian audience through an interactive plenary session at the International Conference of Indian Association of Palliative Care in Kochi, India (5). During this session, participants were asked to translate portions of the SICG into their local language and then we considered how the SICG could support palliative clinicians in a variety of clinical settings. The overall consensus from this work in India, is that the SICG is applicable in this setting and can be beneficial, as it offers a simple and accessible framework to support clinicians to conduct communication about patients’ goals of care.
Importance of this paper
The case report by van Breemen et al, describes the key considerations for enhanced communication using the SICG-pediatric adaptation (SICG-Peds). This communication is characterized as “goal-based, efficient, comprehensive and consistent between providers” recognizing some of the key features which parents have described as critical components of communication in the setting where their child is seriously ill, several of which are further discussed below (6).
Setting up the Conversation
“With your permission, I’m hoping we can talk about where things are with your child’s illness [insert child’s name] and where things might be going- is that okay?”
(as described by van Breemen et al, step 1 of the SICG-Peds (Version 5))
Asking for permission to start a conversation is emphasized as an important first step towards having a serious illness conversation. The act of seeking permission supports collaboration with parents to find a suitable time and ensuring the right family members can be present. This is a tangible way to show respect and develop a collaborative partnership with parents, recognizing the importance of engaging in building a common understanding of the child’s condition, working towards shared decision making. Providing clinicians with parent-tested language for setting up the conversation is very helpful particularly for improving the skills and competencies of learners and novice clinicians. In a previous letter to the editor, van Breemen, also highlights the benefit of this approach for clinicians, noting that this structured approach allows for an effective conversation even when clinicians may be fatigued.
“I hope that he or she will continue to live well for a long time, but I worry given what we know [insert information about illness and recent changes] that her or she could become sick quickly.”
(as described by van Breemen et al, step 3 of the SICG-Peds (Version 5))
Clinicians frequently hesitate to provide clear prognostic information, believing that this information will crush a family’s hope. However, the evidence of communication has found that parents not only want, but also rely on honest information to develop advance care plans for their child (7). The guide provides practical and patient-tested language about how to respond and align with parents’ hopes, while sharing clinicians’ concerns. This “hope/wish-worry-wonder” framework as described in the SICG, provides support for clinicians to engage in this approach.
The highlighted article is also linked to several other recent publications on the subject of serious illness training (2,3,8). Daubman et al recently published Best Practices in Teaching Clinicians to Use a Serious Illness Conversation Guide (8).This publication provides further evidence about the use of the SICG. Best practices in SICG training include setting up a safe learning environment and identifying common pitfalls, such as learners refusing to participate in role play, and running out of time for all participants to practice.
Safe Learning Environment
SICG facilitators can encourage participants to learn from each other, with the facilitator acknowledging everyone’s experience, which is particularly relevant to ensure that senior clinicians by-in to the role play and feel safe to participate. Discussing feels about role-play can also be helpful to allow learners to share and process their feelings of vulnerability and anxiety around role-play.
The SICG training program focusses on having learners conduct a conversation about the patient’s goals and values following the steps laid out in the SICG. However, this approach may be novel for participants and thus they may be resistant or unable to understand what they are expected to do during role play. As such, several strategies are suggested by Daubman et al, including using a drill where the learners are provided with a model of using the guide. Additionally, it is important to ensure that the first learner completes the task as this learner sets the tone for the rest in the group and subsequent learners are likely to follow in a similar fashion.
Communication remains critically important in palliative care, but beyond our skill in these practices, palliative care clinicians are often called upon to teach communication skills to a wide variety of other clinicians. The SICG and the associated training program, as described in these two articles offer a structured communication format which can be effectively taught to a wide variety of clinicians, which suggests that using checklist as a communication framework can be an effective strategy.
Setting up the conversation and the “wish-worry-wonder” framework are excellent examples of communication practices which the SICG incorporates. Teaching strategies include the development of a safe learning environment by acknowledging learner experiences and anxiety and emphasizing the importance of structured communication can enhance learning of participants attending SICG workshops.
My personal experience implementing the SICG in a variety of settings in Canada and India, has indicated that it is highly relevant and readily acceptable for clinicians in these settings.
- Wolfe J, Jones BL, Kreicbergs U, Jankovic M. Palliative Care in Pediatric Oncology. Springer; 2018.
2. Bernacki R, Hutchings M, Vick J, Smith G, Paladino J, Lipsitz S, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015 Oct 1;5(10):e009032.
3. Bernacki RE, Block SD. Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014 Dec 1;174(12):1994–2003.
4. van Breemen C. Adapting the serious illness conversation guide for use in pediatrics. J Palliat Med. 2018;21(12):1683–1683.
5. Daniel S, Venkateswaran C. IAPCONKochi 2019 Proceedings. Indian J Palliat Care. 2019 Jun;25(2):255.
6. van Breemen C, Johnston J, Carwana M, Louie P. Serious Illness Conversations in Pediatrics: A Case Review. Children. 2020;7(8):102.
7. Lotz JD, Daxer M, Jox RJ, Borasio GD, Führer M. “Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med. 2017;31(8):764–771.
8. Daubman B-R, Bernacki R, Stoltenberg M, Wilson E, Jacobsen J. Best Practices for Teaching Clinicians to Use a Serious Illness Conversation Guide. Palliat Med Rep. 2020;1(1):135–142.