Linda Barclay

In sickness and in dignity: A philosophical account of the meaning of dignity in health care

The meaning of dignity in health care has been primarily explored using interviews and surveys with various patient groups, as well as with health care practitioners. Philosophical analysis of dignity is largely avoided, as the existing philosophical literature is complex, multifaceted and of unclear relevance to health care settings. The aim of this paper is to develop a straightforward philosophical concept of dignity which is then applied to existing qualitative research. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care practitioners respect a patients dignity when they refrain from transgressing the patients standards and values, or refrain from forcing the patient to transgress his or her standards and values. This concept is shown to explain and illuminate most of the key qualitative findings. It therefore provides a more coherent and synthesised concept of dignity in health care.

Natural Deficiency or Social Oppression? The Capabilities Approach to Justice for People with Disabilities

Theories of distributive justice are often criticised for either excluding people with disabilities from the domain of justice altogether, or casting them as deficient in personal attributes. I argue that the capabilities approach to justice is largely immune to these flaws. It has the conceptual resources to locate most of the causes of disadvantage in the interaction between a person and her environment and in doing so can characterise the disadvantages of disability in a way that avoids the imputation of natural deficiency. However, I also argue that the capabilities approach cannot accommodate some of the stronger claims advanced by some disability scholars. No plausible capabilities approach can guarantee that social change will always be the just or fair remedy for disadvantage, and there is a small number of severe cases of disability where capability shortfalls will be attributed to the person’s ‘deficient’ physical and mental impairments.

Egalitarianism and Responsibility in the Genetic Future

Recent discussions of genetic enhancement have argued that unregulated access to genetic enhancement technology will have a mainly negative impact on equality, a development that an egalitarian approach to distributive justice should be concerned with and seek to address. I argue that the extent to which egalitarians should be concerned about unequal access to genetic enhancement therapies has been overplayed. Many of the genetic differences that exist between people, including those that arise from differential access to genetic enhancement technology, are simply irrelevant to egalitarian concerns. I also argue that most commentators have failed to appreciate that an egalitarian-inspired program of equal access to genetic enhancement technology may not be altogether favourable for the genetically disadvantaged in any case. The true implications of egalitarian justice in the genetic future have not been adequately explored.

Dignitarian medical ethics

Philosophers and bioethicists are typically sceptical about invocations of dignity in ethical debates. Many believe that dignity is essentially devoid of meaning: either a mere rhetorical gesture used in the absence of good argument or a faddish term for existing values like autonomy and respect. On the other hand, the patient experience of dignity is a substantial area of research in healthcare fields like nursing and palliative care. In this paper, it is argued that philosophers have much to learn from the concrete patient experiences described in healthcare literature. Dignity is conferred on people when they are treated as having equal status, something the sick and frail are often denied in healthcare settings. The importance of equal status as a unique value has been forcefully argued and widely recognised in political philosophy in the last 15 years. This paper brings medical ethics up to date with philosophical discussion about the value of equal status by developing an equal status conception of dignity.

The Importance of Equal Respect: What the Capabilities Approach Can and Should Learn from Human Rights Law

Martha Nussbaum has argued for the superiority of her capabilities approach over the language of human rights. In this article it is argued that the capabilities approach is incapable of justifying something crucially important expressed in international human rights law: the requirement that every government treat all people as having equal status. Nussbaum has recently grappled with the role of equality within her approach, but has failed to offer a satisfactory explanation of its importance. The reason is that the value and importance of equal status cannot be fully articulated in the language of capabilities alone. While most philosophical conceptions of human rights also fail to incorporate the importance of equal respect, the limitations of the capability approach are more serious. For the purposes of specifying the duties of governments, capabilities are not the only things that matter.

Exploitation and double standards in research in developed countries

If it is so obvious that international participants should share in the spoils of research profits, why isn’t it equally obvious that participants who share nationality with the researchers should do so as well? I argue that if one believes that some form of benefit-sharing is morally obligatory in research conducted in developing countries, it is very hard to escape the conclusion that it should at least in some circumstances be thought equally obligatory in research conducted within the borders of developed countries. I show that untenable assumptions about solidarity and altruism within developed countries are relied upon to deny fair treatment to research participants in developed countries — treatment that would be considered exploitative if meted out to citizens in developing countries.

Rights, intrinsic values and the politics of abortion

In Lifes Dominion Ronald Dworkin argues that disagreement over the morality ofabortion is about how best to respect the intrinsic value of human life, rather than about foetal rights as many people mistakenly suppose. Dworkin argues that the state should be neutral indebates about intrinsic value and thus it should be neutral in the abortion debate. Through a consideration of the notion of intrinsic value, it is argued in this article that Dworkinsargument fails. On the interpretation of ‘intrinsic value’ which Dworkin seems to favour, it is shown to be implausible that such a notion accounts for different views about the value of human life. On an alternative interpretation of ‘intrinsic value’ it is argued that the state is not usually neutral on such matters, and thus there is no reason why it should be in the case of abortion.

The experiences of social and community participation of people with non-traumatic spinal cord injury

BACKGROUND/AIM Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. METHODS Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. RESULTS The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. CONCLUSION By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

Author’s response to ‘From the struggle of defining to the understanding of dignity: A commentary on Barclay (2016) “In sickness and in dignity: A philosophical account of the meaning of dignity in health care”’

Multidisciplinary engagement in the field of medicine is commonplace. Whether it concerns abortion, physician-assisted suicide, stem cell research, the cost of health care, or access to medicine, it is rarely questioned that ethicists and philosophers have an important seat at the table. Their presence is much less common in the field of nursing. Misunderstanding, perhaps even resistance, is to be expected. Caldeira et al. (2016) state that I “criticise the ability of qualitative research” to clarify the concept of dignity. No, I don’t. I argue that qualitative research, and especially small-scale narrative research, is insufficient on its own. Philosophical or ethical theorising would be equally insufficient if it attempted to understand what dignity means in the context of health care without insight from qualitative findings – from those at the ‘coalface’. We don’t dispute the benefit of philosophical analysis in contributing to clarifying other key medical terms, such as ‘consent’ or ‘autonomy’: to the contrary, philosophical analyses are standard textbooks in medical education (Beauchamp and Childress, 2001). Of course we can no more expect universal agreement on my proposed concept of dignity than exists with respect to the concepts of ‘autonomy’ or ‘consent’ (Beauchamp and Childress, 2001; Manson and O’Neill, 2007). Disagreement is the fertile ground for reflective progress. Caldeira et al. (2016) suggest that I haven’t provided any such further insight. They point out that NANDA-I already provides a ‘diagnosis’ of risk factors for dignity violation. Indeed, the ‘risk factors’ mentioned in NANDA-I are also discussed in my paper.