Gutwald, Rebecca Sarah (2014). 'The quality of life in medical ethics – (how) can the Capability Approach provide assistance in assessing the good life in medical decision-making?' Paper presented at the annual conference of the HDCA, 2-5 September 2014, Athens, Greece.
The quality of life and its measurement is an important issue in the theory of the capability approach (CA). Can the notion of well-being which is suggested by the CA be used as a tool in assessing the quality of life in medical ethical decision making?
At a first glance, the answer seems: yes, why not? The CA is a theory that provides us with standards for measuring well-being. Why not take this standard in order to evaluate the quality of life in medical decision-making when there is a question about patient well-being?
Surprisingly there is very little literature on this topic. Most of the works that do address the application of the CA in medical ethics address the issue of social justice. Others deal with the economic evaluation of the quality of life in terms of QALYs (quality adjusted life years). Social justice is, no doubt, an important field in which the CA has a lot of valuable insights to offer. There is, however, another important area of medical ethics in which judgements about quality of life play an important role (even if it is not always addressed explicitly). Judgements about the quality of life of an individual have a bearing on decisions about medical treatment which are often jointly made by the physician and his patient, or by the patient alone.
Thus, how to design the framework for medical decision-making in a clinical context constitutes a major ethical concern, raising questions about who has the right to decide about treatment, what a patient should know etc. Following the liberal tenet of respecting a person's autonomy, policies such as informed consent are designed. Here, the quality of life of a particular individual, usually the patient, has to be assessed.
The goal of my paper is to examine how considerations about well-being as they are suggested by the CA may figure in medical decision making. I use Martha Nussbaum's version of the CA and argue that it advocates a partial, complex and multidimensional concept of the good life. The CA therefore has something valuable to add to the present discussion in medical ethics which largely focuses on autonomy and the competence to make voluntary decisions.
Questions about the quality of life become especially relevant in case of terminally ill or very old patients, i.e. in decision-making about the end of life. Hence, I use cases and examples from this context, e.g. the issue of whether one has a right to die.
I proceed in three steps. First, I will examine the notion of the good life and its relevance in Nussbaum's account of the CA. Like all versions of the CA, Nussbaum's approach emphasizes the central role of freedom and agency. I argue that we should base judgments about quality of life on the central demand of the CA that looking at resources or achieved functionings is not enough to assess the well-being of a person. We should also look at what a person can do or be. For decision-making about the end of life, the quality of life of person can be assessed not only by reviewing what a person prefers (or has previously preferred) but also by what he is able to do or be given his poor health.
In the second part I will focus on identifying the particular substantive elements of Nussbaum's CA which are relevant for end of life decisions. Nussbaum provides an account of core human entitlements the respect and promotion of which is required by human dignity. These entitlements are incorporated in her famous list of ten 'Central Human Capabilities'. I argue that a notion of quality of life can be based on this list which is suitable for decisions about the end of life by focusing on those areas of capabilities which are most relevant for medical decision making: life, bodily health and integrity, emotion, practical reason and affiliation are focal, but also the other items on the list need to be considered to get a holistic and adequate picture of a person's well-being. So, autonomy and the (previous) decision-making of a person is not the only aspect that has a bearing on medical decision-making. Autonomy will remain an important consideration also from the point of view of the CA. But also other factors, such as the relevant opportunities a person has or should have, will play a significant role.
In the third and final part I will line out some of the practical implications which follow from employing the CA in medical decision making. Nussbaum's CA (and also Sen's) demands that interventions, policies and decisions in medicine should be designed with the goal that a person has sufficient valuable opportunities to choose from according to his own conception of the good life in the various dimensions identified by Nussbaum as well as the abilities to form decisions for himself. I argue that we can employ this idea even at the end of life, where opportunities are limited and abilities often heavily compromised. By relying on the CA we have a versatile perspective to look at the individual's life, his point of view and the functionings he may still reach. This offers a multivariate perspective on a person's life which transcends the focus on patient autonomy. My paper closes with a body of critical remarks on the problems that an advocate of the CA faces in dealing with medical ethics.