05. The purposes of this course

The purposes of this course

Given the changing climate of childhood disability and the recognition that ethical dilemmas potentially inhabit every corner of the field, our goal with this course is to explore the interface between good clinical practice and ethical practice, and bring to life some of the ethical issues professionals experience in the field.

To do so we have tried to articulate how we see the ethical dimensions of all aspects of clinical practice, and equally to reflect on how ethical principles should inform the further development, structure, concepts and content of the field.

We hope to encourage people to consider issues of daily clinical life in the context of the perspectives that our authors have contributed to the continuing development and refinement of the world of neurodisability and the care of children with chronic health conditions.

We hope to promote a shared (or at the very least enriched) vision of how we can identify and address ethical issues— including how we can potentially prevent them from doing harm or creating problems— by developing partnerships with families and young people with impairments, and with colleagues, and of course with ethicists!

It is the hope of the editors and publishers of this course that in addition to its exploration of ‘everyday’ ethical issues and dilemmas in our field, the course will provide material for use as an educational resource. We imagine modules of the course becoming the focus of discussion in departments, and in programs for inter-professional education and collaboration, as a way to bring to light (and to formal consciousness) the kinds of issues our authors have identified and discussed. In fact, these discussions could broaden the ethical arena to include alternative approaches for both the analysis and any potential resolution of dilemmas.

To this end, we have identified three or four ‘Themes for Discussion’ at the end of most modules. These issues are in no way meant to be anything more than examples of the kinds of topics we believe should provide continuing opportunities for dialog and discussion. In this way the course may provide educational material and become the kick-off point for conversations among professionals at every stage of their experience, and hopefully also between professionals and program managers, funders and policy-makers. If this happens, the course will have served one of its key purposes.

As with so many of the issues and questions, there is rarely a clear answer. There is also usually more than a single ethical aspect to a clinical scenario. The reader will recognize that there is an apparent overlap in some of the clinical scenarios (e.g. those that unfold in the ICU or in rehabilitation settings). However, the subsequent discussions emphasize different ethical aspects. We believe that it is worth asking rhetorically whether, by framing these common clinical challenges within an ethical as well as a service delivery context, we might provoke more, and more serious, discussion of the need to bring these issues forward and resolve them more effectively than is often done.