Disability – ethical issues: a complex and under-recognized challenge in clinical ethics consultation

In June 2010 the UK Clinical Ethics Network (UKCEN) met in Cardiff for its ninth annual conference. The theme of the conference was ‘Disability – ethical issues’. Its aim was to inform attendees on issues of multiprofessional interest in this infrequently discussed and complex field in ethics – and generate as much open debate as time would allow. A selection of papers arising out of the conference presentations is published in this issue of Clinical Ethics. ^1–3

Experts from a variety of backgrounds (medicine, ethics, law, social sciences) thoroughly analysed the topic and facilitated the cross-fertilization of ideas, views and understanding. The participation of a number of disabled persons, carers and campaigners rooted the discussions in the reality of what it means to be a disabled user of public services such as the NHS.

The theme was chosen in response to a growing recognition of the ethical dimensions of disability-related challenges, within society at large and within the NHS. UKCEN, through its member Clinical Ethics Committees (CECs), recognizes that clinical ethics support forms a key element of good clinical governance and practice. Across the spectrum of health professions such support can be instrumental in the provision of effective teaching and training, in the development of clinical guidance and in raising general awareness on how to approach and resolve ethical conflicts.

Consequently, the organizers of the conference and the authors of this Guest Editorial hope that the published contributions arising from the conference will assist in furthering these aims and helping readers come to grips with some of the most difficult issues relating to clinical care for disabled persons.

As an introduction to the topic and to establish a framework for discussion, the first article surveys different concepts of disability and the scope of ethical and social discourse about it. ¹ This is followed by a discussion around lessons to be learnt from previously published controversies. ²

Subsequent contributions focused on examples of ‘ethics-oriented’ approaches and their potential consequences, both for the theory ³ and the practice ⁴ of biomedical and clinical ethics and on the international legal and political framework. ⁵

Towards the end of the conference these contributions were contrasted with presentations describing the practical realities of living with disability. These talks were given by a disabled person ⁵ and a carer of a disabled person, ⁶ both of whom gave detailed accounts of the struggles in the course of their daily lives. These were intensely personal life experiences, which reflected the grinding slog, recurring frustration and occasional triumphs encountered by people with disabilities and their carers.

A number of the attendees at the conference experienced the plenary discussion arising out of the presentations as highly challenging and in some respects a synthesis of new perceptions and insights was generated.

The ‘key results’ that arose during the plenary were the following:

Regarding the concept of ‘disability’: It was evident that this may well be considered within a number of different accounts (e.g. medical, social, phenomenological, welfarist). These differ in approach, perspective, ethical theory and practical focus. In any particular case analysis different frameworks (or ‘approaches’) may lead to very different conclusions or explain very different phenomena. There clearly is no single ‘best’ or ‘commonly shared’ approach possible (or necessary) for the definition of disability;

In analysis and discourse such differing approaches all constitute potentially valuable tools. These might best be employed in combination in order to ensure that the full complexity of the case is considered;

CECs and other forms of clinical ethics consultation may, by their mandate, be instrumental in guiding such discourses and decision-making processes. However, as illustrated by the case of Ashley X, ² CECs should be mindful of the potentially far-reaching implications of their recommendations;

CECs can retain their value as a reference group within NHS trusts only if their terms of reference are clearly understood to be linked to the host trust's clinical governance structures. They have to maintain transparency of processes and routinely undertake quality control measures (at least by audits and training of their members);

It was apparent that to date CECs in the UK on the whole have had relatively little active involvement in disability issues. A similar paucity of active engagement appears evident in the peer reviewed medical literature: Disability issues have so far not very commonly been identified as a major issue in clinical ethics and the practice of ethics consultations. This suggests that the ethical challenges relating to disability continue to be under-recognized;

From the perspective of disabled people and their advocates, the key priorities continue to be empowerment and rooting out discrimination. There continues to be a pressing need for an open and fair public discussion about the way forward and an engagement with advocates who have the appropriate expertise in the moral and practical issues affecting people with disability; ^6,7

It became clear during the conference that CECs should generate training and discussion around ethical issues to do with disability. The aim should be to raise awareness among the clinical ethics community regarding the complexity of disability issues. Conference attendees came to the conclusion that CECs should endeavour to include individuals who have expertise in disability issues among their membership. Without such representation the CEC is liable to be blind to very significant ethical challenges. It was recognized that properly constituted and effective CECs may in due course assume a leading role in their host trusts on matters such as raising awareness, teaching and training, consultation and policy-making on issues relating to disability;

Moral questions surrounding disability are challenging and sometimes dauntingly radical. For example: What do we mean by disability? Is ageing itself a disabling condition? What constitutes ‘equality’? Are there ‘limits’ to rights and entitlements in a liberal democracy? How do we achieve open and honest debate on these difficult issues in the face of popular sentiments of ‘political correctness’?

The biggest stir at the Cardiff conference – which seemed to generate a ‘leap of understanding’ – was the recognition of how appallingly undervalued the situation of carers continues to be. There are more than six million disabled persons in the UK who require the support of a considerably larger number of carers. They are estimated to be about £11,500 per year worse off; they are among the socially most excluded groups; for the most part close family members of a disabled person have no realistic choice other than to care for their disabled relative; one in five carers is suffering from serious caring-related health conditions. Surprisingly, fewer people currently receive social services' support than 20 years ago – and this burden is set to increase, especially in the prevailing economic climate; ⁵

It was suggested that the greatest foreseeable challenge for the future of ‘disability issues’ may well be to take account of the fact that our society relies heavily on carers, who themselves are socially handicapped due to the lack of adequate support for their compromised position in the community. Any future set of moral concepts relating to disability will have to include considerations of justice relating to carers (as much as they now apply to disabled individuals) and seek to grant carers some equitable form of protected status invested in law and in society's moral frameworks. ⁵

The final session at the UKCEN 2010 annual conference provided helpful information on potential funding opportunities for research in and engagement with biomedical and health-related ethics made available by the Wellcome Trust, London. This may well be very important for many CECs across the UK. ⁸

A conference dinner, poster-sessions, the UKCEN Annual General Meeting and many other opportunities to ‘network’ in congenial surroundings gave attendees a well rounded ‘ethical experience’.

Attendees at the Cardiff conference could avail themselves of an opportunity to attend a ‘Train the Trainers’ workshop on the day prior to the conference – a format UKCEN hopes to maintain in future. The course was free to CEC members and was sponsored by UKCEN (itself a charity with educational aims). This workshop forms part of a larger, long-term strategy to create trainers among the members of CECs throughout the UK, to enable them to improve the standard of clinical ethics advice within their organizations.

Formal feedback indicates that attendees found the conference content well targeted to their training needs and that the quality of presentations was of a very high calibre. The next annual UKCEN conference will be held in Glasgow on 23 June 2011.