Chapter 1
Life, death, disability and impairment in context
Introduction
This book is concerned with way(s) in which some people – because of disability or impairment – are treated in the healthcare setting, specifically at the beginning and end of life. In particular, it addresses the extent to which ethical principles and/or legal rules can shape the way(s) in which impairment or disability is used to influence society’s judgements about people; most particularly at the beginning and end of life. We are concerned with identifying how, and in what way(s), law and ethics in this area are coherent with the aims of living in a society which truly values the principle of non-discrimination. Moreover, we will evaluate the extent to which law and ethics may inform the debate about the treatment of people with impairment or disability, and/or be utilised to ensure that it is no longer valid to claim – as many do – that the prejudice of the ‘abled’ in respect of the ‘dis-abled’ results in discriminatory assumptions and practices which can have profoundly important consequences. In doing so, we will evaluate the models usually used to critique social and legal approaches to people who live with impairment or disability, and consider whether more is needed than simply resolving the apparent tensions between them. The healthcare setting is ripe for such an evaluation. Not only are the decisions made in that context of extreme importance, as they may predict life or death, but they also occur within a relationship that is already unequal.
Although healthcare professionals increasingly eschew the paternalism which once characterised the relationship between doctor and patient, there remains an inevitable inequality between them which permits of – even mandates – treatment which, at its best can be called beneficent and at its worst, paternalistic. While it is now both ethically and legally accepted that healthcare decisions are the primary responsibility (and right) of the legally competent, individual patient, nonetheless even now patients remain dependent on the quality and extent of information provided by the doctor or nurse.1 However, medical decisions may be – at least in part – based on presumptions about people’s ability to receive, retain or utilise information and on the authority often handed to clinicians to make decisions about legal competence or capacity.2 For those with impairment or disability, it may be all too easy to make discriminatory judgements about their capacity, or – even more worryingly – about the quality of their lives, potentially leading to prejudicial treatment. As was said, for example, in the case of Ms B,3 ‘. . . a seriously disabled person has the same rights as the fit person to respect for personal autonomy. There is a serious danger, exemplified in this case, of a benevolent paternalism which does not embrace recognition of the personal autonomy of the severely disabled patient.’4 (emphasis added)
The law’s traditional deference to medical judgements affects the rights of all patients,5 but is likely – as we will see – to have a more significant effect on those with impairment or disability. Indeed, the presumption that life with impairment or disability is inevitably of lesser quality than one without them is probably common, and delimits the very foundations of our approach to people in those situations. The Disability Rights Commission (DRC) for example, has said:
. . . there is compelling evidence from research over a number of years up to the present day that discrimination in general health services exists. This qualitative research has recorded consistent testimony from disabled people and their families about the discriminatory attitudes they face from medical professionals, and the poorer services they receive in the NHS.6
Finally, the infantilisation that can characterise anyone’s interaction with healthcare – however unintended by healthcare providers it may be – will arguably be more acutely experienced by those who often start on a far from level playing field – at least as far as others are concerned.
In this book we will examine claims that prejudicial attitudes towards impairment and disability result in discriminatory practices at the beginning and end of life. We will also argue that robust philosophical and legal resources are essential if such discrimination is to be removed from healthcare institutions and indeed from society itself. However, we will also argue that the resources currently offered by the law and applied ethics are not always sufficiently robust to prevent or correct discrimination when it is identified. This makes it difficult to evaluate what is discrimination and what is not, and poses profound difficulties in the assessment of treatment that is appropriate and that which is not. Yet it is important that we can do this. Failure to do so leads to a ‘one size fits all’ approach to people without nuance or subtlety and can also lead to presuming homogeneity in a group of people who are every bit as disparate as those who do not appear to have an impairment. We say ‘do not appear to have an impairment’ because in reality, we all have characteristics (genetic, for example) which could be categorised as impairment, in that they deviate from some postulated norm. Viewed in this way, we could all be seen as impaired or disabled.7 The assumption that there is an identifiable group of people who are ‘disabled’ therefore is in itself at odds with reality, and, even if it were not, it is surely society’s role to minimise prejudicial presumptions that – in the healthcare setting in particular – can affect whether or not they are born and whether or not they should live. We do not deny that some impairments may well be relevant to the way in which healthcare professionals approach patients. For example, the patient in a permanent vegetative state will necessarily be treated differently from a competent, adult patient; a person with profound learning disabilities cannot be expected to meet the standards which are required to obtain a true consent to treatment. What is important, however, is the way(s) in which these differences are used, that is, whether they are unjustly discriminatory or relevant to the case in hand.
Disability: national and international responses
It can be said without equivocation that it is an important sign of a civilised society that it protects its vulnerable citizens. Recent history, however, has shown just how easy it is to deny fundamental social, legal and political rights to those who are disabled – or just different.8 Unfortunately, it has been necessary to introduce legislation to try to require non-discrimination based on people’s sex,9 race10 or – more recently – disability.11 The capacity of the law to prevent discrimination against people with impairment or disability depends, we argue, on its foundation in ethically sound and appropriate principles as well as on social and cultural change. The limitations of the law have been noted by Johnstone, who says:
The law plays both an important symbolic and practical role in forming the ideological systems that legitimise specific sets of values and assumptions in society. It is, therefore, fundamental in forming the framework within which both groups and individuals interpret their participation in society. However, the traditional assumptions that the law does not discriminate have to be questioned. Although appearing impartial and neutral, the officers of the law and the judiciary are subject to the same prejudices as those from whom it is meant to stand apart.12
The law, as well as the personnel involved in its implementation, therefore, need both to establish appropriate goals and put in place the mechanisms to ensure their implementation.
In recent years, there has been a plethora of national and international pronouncements on the philosophies and aims underpinning the appropriate response to people with impairments or disabilities. For example, The Madrid Declaration, heralding 2003 as the Year of People with Disabilities (YPD) says:
The Madrid Declaration takes as a starting point the analysis of the current situation of people with disabilities in the European Union . . . . It proposes a general vision, in which disabled people are not objects of charity and patients, but independent citizens fully integrated in society.13
The values which were promoted throughout the year were briefly described as follows:
- nothing about disabled people without disabled people;
- disabled citizens are entitled to the same rights as other citizens;
- disabled people want equal opportunities, not charity;
- creating a society for all;
- empowerment and emancipation;
- full equality and participation in all sectors of life;
- disabled people as active citizens;
- making the environment accessible;
- independent living;
- respect for diversity.
The announcement of the YPD followed a series of other declarations, promulgations and regulations emphasising the need to obtain equal rights for disabled people. For example, in 1971, the United Nations promulgated the Declaration on the Rights of Mentally Retarded Persons,14 Art 1 of which states:
The mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings.
The Declaration on the Rights of Disabled People was promulgated in 1975 and asserted that:15
Disabled persons have the inherent right to respect for their human dignity. Disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible.16
In 1995, the European Parliament17 called:
. . . on the Commission and the Member States, in their revision of the Treaties at the Intergovernmental Conference, to build in a clause forbidding discrimination on the grounds of disability; . . .
In 1996, the ‘Resolution on the rights of disabled people’ was promulgated by the European Parliament,18 and called:
. . . on Member States to include a non-discrimination clause on grounds of disability in the revised treaty on European Union, to enact a new legal basis for social programmes, and to introduce non-discrimination measures at Member State level, and to treat disability rights as a civil rights issue; . . .
In 1996, the European Parliament affirmed the following:
The European Parliament
- Repudiates forcefully the thesis that disabled persons, patients in a persistent vegetative state and new-born children have no unrestricted right to life;
- Reaffirms its unshakeable conviction that the right to life must be recognised in respect of every human being independently of his or her state of health, gender, race or age; . . .
- Calls on pa...
