Disagreeing with another person is difficult and often horrible. It is hard to imagine how much more difficult this is when doctors and parents disagree on the treatment of a child with a life-limiting condition. No such cases have yet come before Scottish courts, but a number have come through English courts, of which perhaps the most well-known is Charlie Gard. Charlie was diagnosed with a rare mitochondrial syndrome which left him severely disabled and dependent on artificial ventilation. The positions of Charlie’s parents and the hospital treating him were diametrically opposed. The hospital’s determination was that treatment should be withdrawn and palliative care provided instead, as his condition was medically futile. His parents argued successively that treatment should be continued, or that experimental treatment should be given, and ultimately that palliative care should be given at home. All three requests were either rejected by the court, or dropped by his parents, and Charlie died in a hospice. The progress of this court case took place against the backdrop of a media storm encompassing extremes of response: outpouring of support for Charlie’s parents, death threats against hospital staff, and widespread social media abuse and trolling.
The legal context
English cases such as those of Charlie Gard, Alfie Evans and Archie Battersbee all involved escalating conflicts between parents and clinicians. Once these disagreements reach the door of the court, the test which must be applied is the well-established ‘best interests’ test which takes a holistic view of the child and seeks to balance the benefits and burdens of any proposed or continued treatment. The English courts have been consistent in applying the best interests test and determining that treatment should be withheld or withdrawn in those cases where the child’s condition was medically futile.
One thing which the experience of the English courts has shown is that the court system is not the best place for the resolution of such disagreements. This was powerfully stated by Francis J., where he pleaded for parties to try alternative means of resolution: “However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions” (para 20).
With this in mind, we undertook a research project funded by NHS Grampian Charity to understand the root causes of potential disagreement between parents and clinicians and the possible pathways to resolution out with the court process, situated within the Scottish perspective. The research team was both collaborative and interdisciplinary, including researchers with expertise in healthcare law and ethics (Dr S Sivers, RGU), dispute resolution (M Downie, RGU), social science methodology and the preparation and delivery of the qualitative aspects of the research (Dr H Morgan, Aberdeen University and Dr J Tai, RGU), and paediatric care and treatment (Prof S Turner, NHS Grampian). We were supported by an advisory group which included a parent representative, a paediatric ethics specialist (Dr A Wordie) and a paediatric palliative care consultant (Dr F Herd). Our study design involved undertaking semi-structured interviews with a range of clinicians specialising in paediatrics, and parents of children with life-limiting conditions who are or had been under the care of NHS Grampian.
Potential cause of disagreements: findings from interviews
A major theme highlighted by parents and clinicians alike, was the importance of trust and the impact of a breakdown in a trusting relationship. The mutuality of trust, as a two-way street, was important to parents. If their knowledge and understanding of their child had previously been disregarded by clinicians, they reported that they felt little or no inclination to continue to trust those clinicians in future decision-making. Clinicians recognised the negative impact of a loss of trust between themselves and parents, and the imperative to build bridges, and to work with the common ground between their respective positions, but also recognised that a loss of trust had a personal impact on them as individuals and was often emotionally hard to bear.
Variation in underlying goals
Differences in aims or goals for the care and treatment of a child were a significant source of identified potential disputes. This was recognised as a particular issue in the care of these children as their medical complexity will often require input from more than one clinical discipline. Clinicians identified issues around multi-disciplinary team dynamics which could lead to fractured relationships between clinicians, where goals had not been clearly identified, agreed in advance, and communicated across and between clinical teams. This lack of clarity and communication could then be exacerbated by differences in goals between clinicians and parents. Parents also identified scenarios where they felt less supported by clinicians once they voiced an alternative opinion or requested different treatment. The use of advance care planning was highlighted as something that was potentially extremely helpful, to promote discussion and clarify decisions that had been taken, but that it has to be done at the right time. Parents continued to feel that these discussions were often rushed and left too late.
Communication style and straight talking
Clinicians and parents also reported differing views on their use of language. There was significant recognition among clinicians of the need to use straightforward, non-technical language, to ensure that parents understood information, could engage in discussions and that information could be shared easily. Clinicians reported that they adopted straightforward language, but parents’ experiences did not reflect this, reporting instances of the use of jargon and technically complex language. Both clinicians and parents acknowledged that in some situations, parents are extremely well-versed in their child’s condition and can engage in technically complex discussions, and that this is acknowledged and acted upon. Transparency in linguistic style was also highlighted by both sets of interviewees. Parents reported that they neither want nor need information to be sugar-coated, and that they often prefer detail. Clinicians also reported that their experiences of engaging with parents had taught them that honest, open conversations, particularly around death, were best carried out in a transparent way, avoiding euphemisms and softening of language.
Parents reported feeling that they are not heard or that their experience and expertise are not valued, and that this can be a cause of disagreement. Parents clearly identified the extent to which, as 24/7 carers, they were experts in their child’s condition, and in how their child responded best to care and treatment. Clinicians were also equally clear that they recognised this parental expertise and valued it highly, but our findings suggest that parents’ perceptions differ. Parents were particularly appreciative of clinicians who put the child front and centre and engaged with them as an individual rather than focusing purely on the parent(s), and also valued an empathetic and understanding approach from clinicians.
The value of advocacy and the role of the charitable sector
A further theme from our findings was the importance of advocacy. Both parents and clinicians spoke about the need for an individual to take on the role of supporting, liaising and advocating for parents, especially when information was complex, overwhelming, and distressing. Parents also highlighted that, while they were their child’s greatest advocate, they often felt the need for someone to advocate for them. While this role was sometimes taken by nurses using their experience of supporting other families through similar circumstances, there was significant recognition of the high regard given to, and the huge value that parents gained from Scottish charities specifically focusing on supporting families of children with life-limiting conditions.
Perceptions of power and authority
Another major factor recognised by both parents and clinicians was the impact of actual, or perceived power imbalances. Both recognised that multi-disciplinary team meetings can be overwhelming, daunting places for parents, where it is hard for them to find their voice. This was recognised as significant, given parents are included in these meetings precisely so that their voice is heard. There was also recognition that aspects of older, paternalistic, and hierarchical approaches to the delivery of care (between senior and more junior clinicians, between consultants and the nursing profession, and between clinicians and parents) still remain but that these are very much on the decline. The generational shift in clinicians’ attitudes, and the decline in paternalistic medicine were recognised as factors which have made significant inroads into this issue in more recent years.
Pathways to minimising the escalation of disagreements
Disagreements will always arise, and in difficult and emotionally charged circumstances such as these, they are even more likely to occur. Our findings point to a number of key areas where additional resources, development and training would help to mitigate their impact and avoid irresolvable conflict that ends up in court. While acknowledging that such training exists within the curriculum, both clinicians and parents highlighted the need for more, and deeper levels of training in empathy and understanding across paediatric specialisms. Acknowledgement of parents’ knowledge and expertise in the care of their child would help to support relationships with families. Earlier inclusion of advance care planning can help to avoid divergence in goals or understanding of the decisions taken. Greater availability of third-party advocacy, liaison and support services, and therefore earlier referrals to specialist charities to support parents is also needed, as they reported that this support and advocacy, put in place at the right time, was instrumental in helping them to navigate their circumstances. Parents also require more advocacy and specific support around preparation for multi-disciplinary team meetings. There are also areas where perceptions differ and where greater transparency and open communication could be beneficial in closing this gap before it becomes a source of disagreement.
We are incredibly grateful for the time and openness of our interviewees, and for the experiences they shared with us which have informed our findings. It is clear that Scottish paediatric practice has shifted significantly, to a family-centred, supportive, and inclusive approach to decisions around treatment, and day-to-day interactions with children and parents. Equally, there are also areas where further work is needed, and areas where there are clear differences in perceptions. To some extent, this is an inevitable outcome of interaction between individuals from different arenas; the parent fighting for what they see as being appropriate and necessary for their child, and the clinician delivering care within the wider context and constraints of national healthcare provision. Our interviews have given us a wealth of data which will allow us to develop tools to help all those involved in the care of children with life-limiting conditions to prevent disputes from escalating to court.