Abstract
Concepts of individual and collective decision-making strongly influence the bioethical foundations and perspectives of palliative and end-of-life care. Kemp and Rendtorf promoted the integrated approach to basic ethical principles (The Barcelona Declaration 1998) and discussed that “autonomy implies the capacity to make your own decisions about your own life”. However, such decisions depend on the interaction/collaboration with others, i.e. their values; the best example is a complex milieu of family communication in the end-of-life care. On the one hand, individual decision-making of palliative care patients could be impaired by their vulnerability, i.e. they are not always able to judge the treatment process and understand/weigh perspectives and possibilities. On the other hand, collective decision-making may give rise to the bystander effect of collective responsibility, described by Isabel Baker. The interplay between individual and collective decision-making in palliative and end-of-life care will be discussed thoroughly from the medical practitioner’s viewpoint.
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Notes
- 1.
The Kennedy Institute of Ethics at Georgetown University was founded in 1971 as the first bioethics center. Prominent leaders of the Institute are André Hellegers (first director), Tom Beauchamp and James Childress. They promoted a ‘rights-oriented’ approach to bioethics, focusing on biomedical issues, and emphasizing autonomy as the main bioethical principle. Their approach is deeply rooted in American tradition of personal liberties and privacy rights. In contrast, the ‘responsibility-oriented bioethics’ affirms beneficence/non-maleficence and justice as the main principles. Main proponents of such a holistic approach are Van Rensselaer Potter and father of the European bioethics, Fritz Jahr.
- 2.
It should be noted that the concepts of individual and collective ethics are not thoroughly accepted by some authors (for example, Heilig and Weijer 2005). They rather appeal to a systematic, comprehensive ethical framework.
- 3.
Thomas Bayes (1702–1761) was an English statistician and philosopher, famous for the theorem named after him (Bayes’ theorem).
- 4.
Originally, the medical staff usually tends to carry out all possible therapy (according to the Hippocratic Oath) despite the patients’ will to cease it and/or the attitudes of his or her relatives to stop with supportive care. Today, the reverse is the case: the hospitals are protected by regulations to unilaterally stop further treatment without fear of legal consequences (e.g. the Advance Directives Act in Texas), while relatives advocate overtreatment.
- 5.
It comprises the continuous use of strong sedatives, e.g. high doses of benzodiazepine (midazolam and others) or opioids in dying patients, aiming at the elimination of suffering and giving the patient dignity in the most difficult moments.
- 6.
However, in some cases the proxy consent might not be provided due to a lack of family support.
- 7.
Advance directives are of particular importance regarding the autonomy of the terminally ill. There are pros and cons regarding their status. For example, Vogelstein (2016) discusses concerns about the moral authority of such directives. In particular, the advance directive reflects the desires of a fully competent person, while everything could have been changed when terminal illness occurs. In other words, the author promotes the viewpoint that “person’s autonomy requires honoring only those desires that are currently attributable to that person”. We can easily suppose that the patient may refuse a ‘hopeless treatment’ as a part of terminal care in his living will, but the relatives may disagree with such advance directives and put pressure on the intensive care medical staff to continue with the futile therapy (for example, antibiotics or cancer chemotherapy).
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Todorović, Z., Protić, D. (2020). Individual and Collective Decision-Making in Palliative and End-of-Life Care. In: Kühler, M., Mitrović, V.L. (eds) Theories of the Self and Autonomy in Medical Ethics. The International Library of Bioethics, vol 83. Springer, Cham. https://doi.org/10.1007/978-3-030-56703-3_11
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