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Commentary on the paper by Lindley et al (see page 335)
An alliance between the healthcare professional, the patient, and the family is at the heart of effective and humane childhood medicine. When patients complain about doctors, and doctors complain about patients, this essential therapeutic alliance has been ruptured or even destroyed. Reason is usurped by fear and concordance gives way to paternalism. It should be remembered that patients often complain about doctors for the same reasons that doctors find some patients difficult to help: when patients don’t get better and they are distressed by it.1
Drs Lindley, Glaser, and Milla have provided an interesting descriptive account of a selection of the behaviour of a small number of parents with children referred to a single paediatric gastroenterologist at a tertiary referral centre, bringing to our attention issues that should be debated further.2 I have brief comments on only two of these issues; other correspondents may wish to raise more. The first relates to the importance of reflexive and quality controlled research, the second relates to the current problems of treating chronic pain in a “modernising” NHS healthcare system.
In this report parents are described in terms of their unwillingness to accept advice, their persistence in seeking further professional opinion and investigation, their use of formal and informal complaints procedures, and their reticence to accept psychological referral. The authors judge some of the complaints to be manipulative. No data are reported on parental mental or physical health, or on any description of family status, or any history of treatments within the NHS. Progress in our understanding of why such unhelpful parental behaviour occurs will be achieved by the specific design of studies with parents as the recruited participants so that the antecedents of complaint and resistance to advice can be fully understood. It will be important, for example, to focus on the realities of the clinical encounter and assess the potential mismatch between the pre-interview expectations of patients, parents, and physicians, and the post-interview memory and understandings of patients and parents.3 In addition, how and why chronic pain patients come to feel blamed by the healthcare professionals offering care is of considerable research interest but has yet to be investigated in childhood pain.4 There should be no doubt that power dynamics and expectations of care are shifting within the NHS, and the specialist paediatric clinic is perhaps one of the most complex domains within which to understand how “partnership” can be achieved.5
Modernisation of the NHS, as the present UK government fashions it, has some broad stroke policies that are having uncomfortable effects on everyday practice. This article wrestles with a cultural shift, the implications of which, the authors are correct to highlight, have yet to be fully realised. Patient expectations of health and healthcare are being driven up; we are encouraged to believe that what is important in healthcare are organisational indicators such as “waiting times” and “global satisfaction”. These targets, and the mechanisms for achieving them, such as “complaints procedures”, are borrowed from the retail and entertainment business sectors and played out in a centrally governed healthcare system. That there is not a perfect fit should be a surprise to no one, even to those who implemented them. There is nothing, of course, intrinsically wrong with not having to wait and with being satisfied. The problem is that good medicine does not always seek to quickly satisfy. Healthcare professionals working with untreatable pain routinely have to negotiate with patients and families to shift their goals from immediate cure to chronic self-management of persistent or recurrent illness. Accepting that pain cannot be cured, or that illness is to be a fact of childhood and family life is a complex and difficult process that is not easy to achieve.6 Until we have fully understood how to reform everyday hospital procedures to maximise the possibility that patients will be safely given and hear difficult messages, individual doctors will continue to find themselves unheard and complained about.
Many children and adolescents suffer chronic pain that has widespread detrimental effects on themselves and other family members.7,8,9,10 Parental anxiety and the impact of parenting a distressed and disabled child in pain are often high. This stress is thought to be a major determinant in the style of coping adopted, whether that be the investment of all resources into searching for a cure, or working to change family habits, routines, and parenting styles. Methods for directly targeting parental anxiety and parenting stress are emerging to be potentially crucial in facilitating child improvements.11 We should be honest and admit that we know embarrassingly little about how families develop illness promoting or illness defeating coping strategies, and only a little more about how to help.12 Until we know more, we should put greater collective effort into building multidisciplinary chronic pain teams in our regional centres. A core task of these teams will be to maintain an alliance between healthcare professionals, patients, and families as they struggle to make sense of the contradictions made prominent when the realities of accepting a life of pain and illness clash violently with our expectations of “modernised” healthcare.
Commentary on the paper by Lindley et al (see page 335)
Competing interests: none declared
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