- Care as Process and the Quest for Autonomy
Ethical issues are prominent in palliative care. How is patient autonomy to be secured under conditions of dependency? What should be the role of family in decisions about care? What is a good death? In reading the presented case by Lalit Krishna, I came to realise again, that care is much more to be seen as a complex process that unfolds itself during time and place than that it is a simple product to be delivered, as if on a market with consumers. This observation does not only apply to the character of palliative care itself, but also when it comes to the question of how we can respect autonomy in care situations. As I will argue below, respecting the autonomy of a patient means much more than simply respecting free choices that are made by the individual. Instead, autonomy should be seen more as something to be attained than as something that is already there.
From a so-called ethics of care perspective, the character of care as an embedded practice and process is emphasised. Care as a practice is, as Virginia Held would state, a form of “relational labor” (Held 2004). In care as a practice, we take care of each other and respond to the three key facts of human existence: dependency, vulnerability and interdependency (Walker 2006). Care as a practice is the answer to these three key facts of human existence, so to say. In that respect, care is also a fundamental aspect of human life.
Caring can take different forms, such as mothering, friendship, nursing and citizenship. These different practices all express significant ways in which we matter to each other (Bowden 1997). And so — I would argue — is palliative care: caring for each other in responding to these key facts of human existence. Palliative care is understood as “the achievement of the best quality of life for patients and their families” (WHO 2002) and should be understood [End Page 150] first and for all as the collaborative and relational work of many involved. This collaborative and relational character is also present in the case of Andrew. In his case, many were involved; not only his family, but also his doctors and nurses. And at the end of the day, Andrew’s dying was the result of the collaboration of many. After the protracted family meeting, it was decided to start with palliative sedation in order to calm Andrew and to ameliorate his hallucinations. By giving the sedatives, the medical team created a situation in which both family as well as Andrew could experience a comfortable process of dying and saying farewell. In other words, by the use of palliative sedation, the medical team created a situation, in which all involved could care for one another, in responding to the experienced vulnerability of Andrew and his family.
Care is not only a form of relational work or activity, but also a value. Practices of care incorporate certain values. For instance, care as an ethical concept gives expression to the values of: (1) responsiveness to human needs; (2) responsibility and competence in care giving; (3) the value of connectedness; and (4) the value of care giving. Actual practices of care not only incorporate certain values, but also need to be evaluated by these same normative standards these values provide. As Held states, “for actual practices of care we need care, as a value to pick out the appropriate cluster of moral considerations, such as sensitivity, trust and mutual concern, with which to evaluate such practices. Therefore, we also need an ethics of care. An ethics of care tries to understand, to evaluate and to guide the relatedness of human beings, built and rebuilt” (Held 2004).
Good caring involves a view on the caring relationship as an ongoing process. That is, care requires specific moral qualities and the four ethical elements of attentiveness, responsibility, competence and responsiveness are related to the four phases of care as a process. The caring relationship is of the nature of a dialogue, in which different players carry out their respective roles towards the accomplishment of an integrated whole. The integration...