It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for making treatment decisions (...) for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (shrink)

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better‐informed decisions has led to the development of dementia‐specific advance directives, in which people are given tools to help them communicate what their preferences are while they (...) are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia‐specific directives and addresses some of the criticisms raised about them. (shrink)

Artificial intelligence (AI) systems are quickly gaining ground in healthcare and clinical decision-making. However, it is still unclear in what way AI can or should support decision-making that is based on incapacitated patients’ values and goals of care, which often requires input from clinicians and loved ones. Although the use of algorithms to predict patients’ most likely preferred treatment has been discussed in the medical ethics literature, no example has been realised in clinical practice. This is due, arguably, to the (...) lack of a structured approach to the epistemological, ethical and pragmatic challenges arising from the design and use of such algorithms. The present paper offers a new perspective on the problem by suggesting that preference predicting AIs be viewed as sociotechnical systems with distinctive life-cycles. We explore how both known and novel challenges map onto the different stages of development, highlighting interdisciplinary strategies for their resolution. (shrink)

Background: Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make (...) treatment decisions for decisionally-incapacitated patients. -/- Methods: This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n=26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents’ overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice. -/- Results: Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient’s preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups. -/- Conclusions: Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it. (shrink)

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance (...) care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 47-49, October 2012.

The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s preferred treatment (...) option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

Surrogates’ decisions to withhold or withdraw life-sustaining treatments (LSTs) are pervasive. However, the factors influencing surrogates’ decisions to initiate LSTs are relatively unknown. We present evidence from two experiments indicating that some surrogates’ decisions about when to initiate LSTs can be predictably manipulated. Factors that influence surrogate decisions about LSTs include the patient’s cognitive state, the patient’s age, the percentage of doctors not recommending the initiation of LSTs, the percentage of patients in similar situations not wanting LSTs, and default treatment (...) settings. These results suggest that some people may use heuristics when making these important life-and-death decisions. These findings may have important moral implications for improving surrogate decisions about LSTs and reconsidering paternalism. (shrink)

The administration of pro re nata medications is the responsibility of the nurse. However, ethical uncertainties often happen due to the inability of incapacitated patients to collaborate with the nurse in the process of decision making for pro re nata medication administration. There is a lack of integrative knowledge and insufficient understanding regarding ethical considerations surrounding the administration of pro re nata medications to incapacitated patients. Therefore, they have been discussed in this paper and practical strategies to avoid unethical practices (...) have been suggested. The complicated caring situation surrounding the administration of pro re nata medications is intertwined with ethical issues affecting the consideration of the patient's wishes and interventions that override them. The patient's right of autonomy and treatment refusal, surrogacy role, paternalism, and coercion are the main ethos of ethical pro re nata medication administration. Education and training can help nurses avoid legal and ethical issues in pro re nata medicines management and improve the quality and safety of healthcare. Empirical research is needed to improve our understanding of this phenomenon in the multidisciplinary environment of medicines management. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 45-47, October 2012.

ZusammenfassungEin Großteil der medizinisch und ethisch schwierigen Therapieentscheidungen betrifft kritisch kranke, einwilligungsunfähige Patienten und wird auf Basis des mutmaßlichen Patientenwillens getroffen. Das Gesetz kann hierzu nur allgemeine Vorgaben geben. Es ist für die behandelnden Ärzte essentiell, sich ein konkretes Vorgehen zu erarbeiten. Wie in der Praxis vorgegangen wird, ist bisher kaum untersucht. Ziel dieser Studie ist es, die Vielfalt der Herangehensweisen und Erfahrungen von Klinikern zum mutmaßlichen Patientenwillen zu erforschen. Wir führten semistrukturierte Interviews mit 18 Ärzten und elf Pflegekräften von (...) intensiv- und palliativmedizinischen Abteilungen eines Universitätsklinikums durch. Die Abschriften der Tonaufnahmen wurden mithilfe der Qualitativen Datenanalyse ausgewertet. Auf einer numerischen Ratingskala wurde erhoben, wie hilfreich die Kliniker das Konzept des mutmaßlichen Willens fanden. Die meisten Studienteilnehmer hielten das Konzept des mutmaßlichen Willens für sehr hilfreich. Zu ihrem Vorgehen berichteten sie, dass sie zumeist die nächsten Angehörigen befragen, zuweilen auch Professionelle und falls möglich die Patienten selbst. Gefragt werde nach früheren Äußerungen der Patienten, nach ihrer Lebenspraxis und -einstellung sowie ihrem aktuellen Verhalten. Benannt wurden auch zahlreiche Unsicherheiten und Schwierigkeiten psychologischer, sozialer, praktischer und konzeptioneller Natur. Der mutmaßliche Patientenwille wird, so unser Ergebnis, in der von uns untersuchten klinischen Praxis entsprechend den gesetzlichen Vorgaben ermittelt. Da jedoch zahlreiche Probleme berichtet werden, stellen wir konkrete Empfehlungen zur Ermittlung des mutmaßlichen Willens vor. (shrink)