The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians’ critical reflections

It is estimated that 750–1000 children with a life-threatening illness die each year in the Netherlands and 5000 children are diagnosed with a life-threatening illness [1]. Of the 1200 Dutch pediatricians, 60 pediatricians (being part of pediatric palliative teams in university medical centers) regularly encounter children with a life-threatening disease. Most Dutch pediatricians – and other healthcare professionals – infrequently encounter children who are in need of palliative care, making them less sure how to proceed in these cases. Moreover, a life-threatening illness has an enormous impact on both the parents and the child. The pediatrician can help in coping, and counseling on treatment related issues as well psycho-social aspects should start as early as possible. Furthermore, new developments in pediatric palliative care and limited knowledge thereof among pediatricians led to unwarranted practice variation [1, 2]. The Dutch Association of Pediatricians therefore deemed it necessary to develop the clinical practice guideline (CPG) Palliative care for children to improve the quality of care for these children. The objective of this guideline is to provide pediatricians support and guidance when caring for children with a life-threatening disease. The guideline was published in the summer of 2013 [3].

The introduction of the CPG Palliative care for children stresses the importance of knowing and discussing the needs of the patient and his or her parents. In addition to palliative intervention recommendations, the guideline consequently also contains recommendations on communication and shared decision-making (SDM) (see Table 1) [3]. The underlying assumption of SDM models is that the doctor-patient relationship is based on mutual respect and on a joint interest to achieve the most beneficial outcomes for the patient, with partners sharing decisions. In this process it is important to understand the patients’ preferences and values, and to acknowledge the doctor’s expertise [4]. However, it is still unclear if and how SDM can be incorporated in CPGs [5‐9]. Van der Weijden et al. describe how guidelines can be adapted to facilitate SDM, e.g. by incorporating patient-centered questions, flagging recommendations for which considering patient preferences is particularly important, or by embedding relevant patient support tools [5]. The Institute of Medicine recommends including patients in the guideline panels to address heterogeneity in patient preferences and include trade-offs in recommendations [10]. Prior to 2013, only a few guidelines tried to do this [11‐13].

Sharing decisions in pediatric care is triadic in nature as parents or other care givers may be as much or even more involved as the child [14]. Furthermore, in the Netherlands children have a right to be involved in deciding about their care from the age of 12 years [15]. A majority of both parents and children prefer to participate in treatment decision-making and consider it an essential component of quality of care, together with relationship building, demonstration of effort and information exchange [16, 17]. Despite the large number of publications in support of children’s (ethical) right – and desire – to participate in their own health care and decisions, pediatricians usually do not involve them in the decision-making. One reason being the clinicians’ underestimation of children’s capabilities; because of the children’s age, pediatricians think they cannot or do not want to be involved in the decision making [18, 19]. A national survey (2011) among Dutch pediatricians showed that 21% perceived a need to share the final responsibility for an end-of-life decision with the parents. Half of the respondents would inform parents and ask for their permission to discontinue treatment, and a quarter would merely inform parents [20]. Reasons for not sharing the decision were: complexity/uncertainty of the decision at hand, and/or protecting the parents. Another important aim of the guideline Palliative care for children was therefore to trigger an attitude shift towards SDM in palliative pediatric care.

The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians’ attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs.

We applied the Standards for reporting qualitative research (SRQR) and Consolidated criteria for reporting qualitative studies (COREQ) for this article [21, 22].

Several participants acknowledged the added value of SDM being included in the guideline PCFC, and more participants were of the opinion that guidelines in general potentially could enhance SDM. Regarding the specific SDM-recommendations in the PCFC guideline, several participants judged these as stating the obvious and lacking detail and practical guidance. Some even said they were offended by these recommendations, perceiving it as an attack on their professionalism because they already do this. Clinical observations, however, have shown that SDM during patient contacts is not standard practice yet. Clinicians think or say that they practice SDM, but when their interactions with patients are analyzed, it appears that the level of SDM leaves room for improvement [9, 29‐32]. The felt attack could perhaps be unjust because of optimistic bias. Furthermore, research suggests that there seems to be a tendency with clinicians to share non-treatment related decisions with patients, and to share the treatment related decisions to a lesser degree [33, 34]. When it concerns children, this could be expected as parents and healthcare professionals might take a protective stance towards the child. However, the child might prefer to be protected in some situations and wants to share decision-making in other situations. In addition, some children prefer to leave the more ‘serious’ decisions to their parents and healthcare professionals, whereas other children prefer to share the decision [19, 35]. The views expressed by the participants seemed to confirm that mainly the non-treatment related decisions where shared, or the less ‘serious’ ones. Combined with the situation that the clinician ‘decides’ which information to share with a patient, the stage for SDM is not ideal [32, 36, 37].

The intention of the Dutch Pediatric Association was to potentially enhance the practice of SDM in pediatric palliative care and to do so by integrating SDM in the guideline PCFC. Therefore, recommendations on SDM were included in the guideline and the necessity of SDM was explained in a separate chapter. However, these SDM recommendations have not been integrated in the treatment related recommendations. The integration of SDM could be done e.g. by re-phrasing these recommendations to increase option awareness and/or to include patient preferences. Other possibilities are to structure the deliberation process and describe it more explicit in the guideline, and/or providing patient support tools [38]. These tools could be linked to a specific recommendation or to the guideline as a whole [5]. In the current format, the guideline might not encourage the interviewed pediatricians to involve patients/parents when talking about treatment choices which might inadvertently contribute to SDM only being used for non-treatment related decisions in children’s palliative care.

Participants were open to recommendations related to an SDM-approach to treatment decisions (i.e. structuring the options in a recommendation to increase option awareness), as was shown when we discussed the modified recommendation on pain relief. More than half preferred the ‘SDM’-recommendation because it can help open the discussion, it shows underlying arguments for different treatments, such as pros and cons, and it enables patients and/or parents to choose. Recommendations such as these are preferable according to the Institute of Medicine (IoM). In its report ‘Clinical practice guidelines we can trust’, IoM suggests refraining from so-called blanket recommendations: a recommendation for all patients to choose one particular treatment, irrespective of the patient’s characteristics, preferences and values. IoM recommends to describe the options and trade-offs in a recommendation encouraging SDM, as its respects the individual choice. In this way guidelines, according to IoM, become tools for patient engagement and activation [10]. The last couple of years more CPGs are being developed in which recommendations address trade-offs and mention more than one option [6, 39‐42].

Another strategy to adapt guidelines so that they could enhance SDM is imbedding patient support tools – such as PDAs – in CPGs. The majority of participants thought that a guideline (recommendation) accompanied by a PDA would be beneficial to engaging patients and sharing the decision-making. Systematic reviews have shown that the use of PDAs supports patients to engage in deciding about their care [43]. Our interviews suggest that the use of PDAs could also help pediatricians to check if they have covered all the topics (PDA as a checklist) and address issues they would normally forget or not consider important. Another benefit of PDAs mentioned by pediatricians was that patients can take the PDA home and reread it. Patients often do not remember everything when talking with the clinician, and by taking it home they can weigh the pros and cons in a more comfortable and less time-pressured setting. PDAs can also help patients to ask questions, as patients not always dare to ask their pediatrician everything [44, 45]. The pediatricians who were not convinced of the benefit of a PDA claimed that patients did not want to use them [8]. Research has shown that patients do want to be involved in (deciding about) their care, and need to be involved [31, 46, 47] including children and adolescents (and their parents) [48‐53]. Another reason why some pediatricians were not inclined to use a PDA was that they felt they know best what to advise based on their expertise, experience with the treatments and the patient sitting in front of them. This attitude is risky for three reasons; firstly, well-informed patients who actively participate in their care are more satisfied with their decisions [54]. Secondly, without using a PDA, the clinician will likely not be complete when providing information to the patient [36, 37]. And thirdly, it has also been shown that clinicians are not always correct in predicting what the patient wants [55, 56]. Moreover, the preferences of a clinician, from the perspective of being a patient herself or himself, often do not match with what they would recommend the patient [57]. Instead of projecting their own opinion on their patients, clinicians should ask what the patient prefers; not only when it concerns treatment decisions but also when it comes to being involved and deciding about their care.

Another important finding is that participants were worried about burdening parents with the responsibility of deciding on their child’s end-of-life care if they engaged them in SDM. However, instead of assuming that parents do not want to be burdened with this responsibility, discussing this with the parents, and/or child, acknowledging their autonomy in the decision-making process, seems to be justified and fitting with SDM. Some research has shown that parents want to be the ultimate decision maker for their child [58], and children value autonomous decision-making, without excluding their parents [51, 59]. In the interviews the pediatricians used the words responsibility and sharing the decision-making interchangeably. It appears that the pediatricians are not aware that even when the decision-making is shared with the child and/or parents, they have the final responsibility for the decision. This unclarity might make pediatricians wary of SDM when it comes to sharing decisions.

Regarding the comments made by the pediatricians that SDM is a skill, and that the recommendations in the PCFC guideline mainly addressed the what and not the how of SDM, the guideline could be enriched with examples of SDM in the pediatric palliative care context. For example, Van der Weijden et al. suggest using a vignette describing how a patient and a healthcare provider discuss the options to reach a shared decision, or could provide scripts modelling SDM-language. However, enhancement of the practice of shared decision-making requires more than an isolated guideline which integrates SDM, especially when it comes to skills and attitude. It needs to be imbedded in an overall SDM contextualized effort for SDM to become common practice. Healthcare professionals could be trained, receive feedback on SDM performance, be facilitated in an SDM approach, work in organizations which advocate SDM and where there is senior-level buy-in of engaging patients in their care and sharing the decision-making with them [9, 32].

The interviews showed that most of the participants thought that CPGs in general potentially could enhance SDM. However, integrating SDM into a guideline seems not to be an easy feat, and guideline developers have to walk a tightrope on how to formulate recommendations on SDM. They have to avoid stating the obvious because it might offend and alienate the pediatrician. At the same time, they have to provide more detail on how to practice SDM. Furthermore, developers could consider formulating more ‘open’ recommendations. Especially in case of preference sensitive choices, the recommendation should describe (treatment) trade-offs and (treatment) alternatives and provide more detailed guidance. Another consideration is to provide tools amalgamated with specific guideline recommendations that enhance SDM, such as PDAs.