Introduction
In bioethics, decisional capacity is grounded in a patient’s ability to be autonomous. Autonomy, also understood as self governance, is a mark of competence and voluntariness (Brudney 2009).
When a patient is found to be decisionally incapacitated, whether temporarily or permanently, they can be appointed surrogates to make decisions in their name. Surrogates tend to be close family members such as spouses, parents, siblings and children (Lindemann and Nelson 2014). The standard is to ask surrogates to make the decision the patient would have made in their given circumstance, this model is known as substituted judgement (Philip and Wendler 2015). Substituted judgement is primarily grounded on the value attached to respecting a patient’s agency.
A surrogate’s decision has also been framed to consider the patient’s best interest, however as outlined by Brudney (2009) and Ahlin Marceta (2020) people do not necessarily will what is best for them; in that case, substituted judgement and best interest are in conflict and complicate a surrogate’s role. Arguing in favor of best interest Dresser (2003) outlined an alternative model that sketched community standards for end of life care and decision making. This model would outline useful boundaries to limit surrogate options, avoid choice paralysis, and the extreme and futile requests some surrogates can demand of physicians. Moreover, this would establish the provision of humane and dignified care for all towards the end of life as a community mission rather than placing the entire burden on individuals. Nevertheless, even if it was possible to arrive at community norms they would be difficult to implement because of how much individual liberty is emphasised in Western society and modern biomedicine (Torke et al 2008).
Other concerns with the standard of substituted judgment include its practical infeasibility due to a lack of empirical support, the fact it relies strongly on the surrogate’s interpretation of what the patient would want, and that it ignores the interest of loved ones in the decision making process. It is also theoretically problematic because the purpose of substituted judgement is to respect the decision making capacity of the patient but one is clearly no longer in a position to disrespect such capacity because it is simply no more (Lindenmann and Nelson 2014; Burdney 2009; Philip and Wendler 2015; Torke et al 2008).
While it was previously grounded in the value of agency, several scholars have argued that respect for a patient’s autonomy should also be guided by authenticity (White 2018; Brudney and Lantos 2011; Ahlin Marceta 2019, 2020). Burdney and Lanton (2011) follow J.S. Mill’s tradition and describe authenticity as the “idea to become oneself.” While agency can be displayed in momentary instances, authenticity is the mark of a sustained achievement and can take a lifetime to form. It represents a homogeneity between primary and secondary desires, demonstrates a coherent causal history, and is meant to be consistent with the agent’s other values, actions, and life plans (Ahlin Marceta 2020).As several authors have argued, even in the presence of advance directives or with evidence of the patient’s prior wishes, there is a moral distinction between what the patient did choose and what they would choose (Burdney 2009; Lindenmann and Nelson 2014).Therefore, navigating both agency and authenticity could provide surrogates with better tools to evaluate a patient’s best interests and draw conclusions based on their specific situation and how it fits with their value hierarchy and life history.
Assigned Readings
The following papers were used to inform and ground the discussion:
Thesis: Brudney highlights that in cases when we ask “What would the patient choose?” the value at stake is not autonomy or best interest but rather the need to be true to the patient’s authenticity.
Thesis: Authors stress the importance distinction between hypothetical and actual situations and highlight problems with the contemporary understanding of surrogate roles and the utility of Patient Preference Predictors.
Thesis: Authors outline how values of agency and authenticity underpinning respect for autonomy can sometimes become at odds and should be assessed comparatively.
Discussion Questions
The following questions were considered by seminar participants prior to the discussion.
- What is the main conclusion that Brudney is arguing for?
- What are his main points/premises (e.g., “what’s the argument)?
- Please think of clinical examples to illustrate the point of the article.
Reflection Points
In discussion, seminar participants reflected on the following points.
There are 3 categories that we need to distinguish, consider, and balance in surrogate decision-making:
- What does the patient want?
- What would the patient want?
- What is the patient’s best interest?
References and Additional Resources
Ahlin Marceta, J. (2020). Resolved and unresolved bioethical authenticity problems. Monash Bioethics Review, 38(1), 1–14. https://doi.org/10.1007/s40592-020-00108-y
Ahlin Marceta J. (2019). A non-ideal authenticity-based conceptualization of personal autonomy. Medicine, health care, and philosophy, 22(3), 387–395. https://doi.org/10.1007/s11019-018-9879-1
Phillips, J., & Wendler, D. (2015). Clarifying substituted judgement: the endorsed life approach. Journal of medical ethics, 41(9), 723–730. https://doi.org/10.1136/medethics-2013-101852
White, L. (2017). The need for authenticity-based autonomy in medical ethics. HEC Forum, 30(3), 191–209. https://doi.org/10.1007/s10730-017-9335-2
Torke, A. M., Alexander, G. C., & Lantos, J. (2008). Substituted judgment: The limitations of autonomy in surrogate decision making. Journal of General Internal Medicine, 23(9), 1514–1517. https://doi.org/10.1007/s11606-008-0688-8