Professor dr. Daniela Moșoiu, Chairman of PALIAŢIA
Patients facing a chronic progressive illness are in a position to make multiple decisions regarding aspects of the illness (aggressive medical treatments, surgery, alternative treatments, etc.) and other issues such as work: “should I continue to work or retire due to illness?”, the best place to get medical assistance or routine care: “to go to a national institute in another city or to be treated in an acute county hospital near my home”, “to stay at home or to go to in an institution where I can be cared for if I am incapacitated” …
There is a lot of talk in medicine about autonomy and the person’s right to self-determination. Autonomy is recognised in modern ethics as a fundamental principle that has been added to the two classical ethical principles of beneficence and non-maleficence. The change came from the need to prevent abuses in medicine and research and the desire to counterbalance the paternalistic model of decision-making and bring the patient’s voice as part of the decision-making process.
Three conditions are needed for a person to be autonomous and self-governing: freedom, competence and authenticity. Applied to this, it means that decision making (freedom) requires that person has the capacity to understand the options available to him, to weigh the benefits and harms (competence) and to present decision with reasons and in accordance with the person’s values (authenticity).
However, there are doubts as how this individualistic autonomy remains valid if a patient has a chronic progressive disease. Decision-making is a dynamic ongoing process rather than an isolated and discrete event, and severe illness often attenuates patients’ preferences for active participatory roles. The patient is not an individual living alone, detached from kin or community as an atomised self-interested identity in its strategic choices. There is a social reality which will influence decision making related to the importance of relationships with family, friends, communities. Sick persons perceive that their decisions affect others and in turn their decisions are affected by the views of others. In non-Western cultures, where family and family harmony are important, decision making will be based more on relational autonomy as on ethical principles.
The palliative care team should follow a collaborative decision-making model, centred on supporting the patient and the family, community and clinical staff to express their values and wishes. The team has to consider in each individual situation whether individualistic or relational autonomy will really contribute to achieve quality of life and comfort for the patient.
- Gómez-Vírseda, C., de Maeseneer, Y. & Gastmans, C. Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Med Ethics 2019;20:76. Available from: https://doi.org/10.1186/s12910-019-0417-3.
- Schofield G, Dittborn M, Huxtable R, Brangan E, Selman LE. Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice. Palliative Medicine. 2021;35(2):315-334.