Capabilities Approach, the Dignified Life and Dementia
Buckley, Shannon (2016). 'Capabilities Approach, the Dignified Life and Dementia' Paper presented at the annual conference of the HDCA, Tokyo 2016.
Martha Nussbaum claims that the ten central capabilities on her list are to be understood “as ways of realizing a life with human dignity” (2006, p. 161), which means dignity and capabilities are closely intertwined. The question my paper explores is whether the capability approach could be a useful, and practical, framework for maintaining and promoting the dignity of the dementia patient. I argue that by focusing on the dementia patient’s capabilities caregivers will not only promote the patient’s dignity but in doing so will also be practicing the virtue of respectful behaviour (Jones, 2015).
The capabilities approach is no stranger to the health care world, both at the policy level and at the bedside. For example, it has been used as an approach to evaluating health related quality of life (Verkerk, Busschbach & Karssing, 2001); evaluating supportive environments for the elderly (Gilroy, 2006); as an approach to understanding disability (Mitra, 2006); and as an approach to delivering patient-centred care (Entwistle & Watt, 2013). For the dementia patient the capability approach would be a viable adjunct to the existing bioethical principles of autonomy, beneficence, non-maleficence and justice (Beauchamp & Childress, 2012; Belmont Report, 1979), which currently guide clinical decision making and patient care. For the dementia patient, promoting and enhancing the ten central capabilities would help ensure the patient is living a life worthy of dignity; a life worthy of respect. From the caregiver perspective, promoting the patient’s capabilities would be a means to actively respect the patient as a person worthy of dignity. By keeping the focus on the patient’s capabilities the caregiver is able to acknowledge the patient’s increased vulnerability and corresponding decreased capacity for autonomy without losing sight of the respect-worthiness of the patient.
I am aware of the criticisms launched at attempts to revive the concept of dignity in the health care context: dignity has been referred to as useless and conceptually empty (Macklin, 2003) or ‘squishy’ and subjective, hence not up to the moral demands we might assign to it (Pinker, 2008). But where does this leave the dementia patient? Respect for autonomy is hardly appropriate given that the dementia patient is not deemed autonomous in the relevant way: she is not competent to make decisions regarding her health care. The remaining principles (beneficence – to promote the good of the patient; non-maleficence – to do no harm; justice – a somewhat ambiguous principle referring to both the fair treatment of patients and the fair distribution of scarce resources) go some distance to safeguard the patient’s medical interests, but, as I argue, they do not clearly and directly address respect for the patient. Other than a capacity for autonomous decision making there does not seem to be any other quality the patient possesses that demands respect. This is where I see Nussbaum’s version of the capability approach coming into play. In Nussbaum’s version of the capability approach the focus is clearly and explicitly on what a ‘dignified’ life requires. I am not suggesting we jettison the principlist approach favoured in western bioethics since the principles outlined above do provide adequate guidance for most patients most of the time. However, the principlist approach does not have the means to capture respect for the patient in hard cases like dementia. Nor does the principlist approach explicitly encourage the virtuous disposition required for respectful behaviour.
Living a characteristically dignified human life is to be fundamentally social, relational, dependent, needy, vulnerable and political. Living the life worthy of dignity requires we have the opportunity to flourish (to be all we can be), and that will inevitably involve the assistance of others. The capabilities approach as a theory of social justice charges political institutions with providing the context for human flourishing. The health care context is not appreciably different. Health care organizations function as institutions that are charged with providing the context in which patients will hopefully flourish within the limits posed by disease and ill-health. It probably will be the case that health care organizations or even individual caregivers will not give each of the ten capabilities equal weight, largely because not all will be under the purview of health care, but the procedure is no different. By promoting and enhancing the dementia patient’s capabilities the caregiver can be assured she has shown her patient respect and ensured her patient is living a life worthy of dignity.