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)

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)

An AI-based “patient preference predictor” (PPP) is a proposed method for guiding healthcare decisions for patients who lack decision-making capacity. The proposal is to use correlations between sociodemographic data and known healthcare preferences to construct a model that predicts the unknown preferences of a particular patient. In this paper, I highlight a distinction that has been largely overlooked so far in debates about the PPP–that between algorithmic prediction and decision-making–and argue that much of the recent philosophical disagreement stems from this (...) oversight. I show how three prominent objections to the PPP only challenge its use as the sole determinant of a choice, and actually support its use as a source of evidence about patient preferences to inform human decision-making. The upshot is that we should adopt the evidential conception of the PPP and shift our evaluation of this technology towards the ethics of algorithmic prediction, rather than decision-making. (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)

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)

A significant proportion of elderly and psychiatric patients do not have the capacity to make health care decisions. We suggest that machine learning technologies could be harnessed to integrate data mined from electronic health records (EHRs) and social media in order to estimate the confidence of the prediction that a patient would consent to a given treatment. We call this process, which takes data about patients as input and derives a confidence estimate for a particular patient’s predicted health care-related decision (...) as an output, the autonomy algorithm. We suggest that the proposed algorithm would result in more accurate predictions than existing methods, which are resource intensive and consider only small patient cohorts. This algorithm could become a valuable tool in medical decision-making processes, augmenting the capacity of all people to make health care decisions in difficult situations. (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 45-47, October 2012.

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)

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

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)

Background: Intravenous fluids and/or antibiotics are applied to only a limited extent in Norwegian nursing homes, and the patients are often sent to hospital in these situations. A transfer and a stay in hospital may be unnecessary strains for frail older patients. Given this background, a collaborative research project was initiated in a Norwegian county in 2009. A teaching programme was developed, which aimed to strengthen the awareness of ethics, assessments and practical procedures related to intravenous fluid and/or antibiotics among (...) healthcare professionals. Objectives: This qualitative study aimed to increase our knowledge of the ethical problems experienced by nursing home nurses in situations related to the administration of intravenous fluids and/or antibiotics. Research design: An exploratory design was used, and five focus group interviews were conducted with 26 registered nurses. A hermeneutic analytic approach was applied. Ethical considerations: This study was reported to the Norwegian Social Science Data Services in May 2010. The Regional Committee for Medical and Health Research Ethics approved the collaborative research project. Findings: The analysis showed that the nurses experienced difficult decision-making situations, which were interpreted as external pressure and internal pressure. External pressure emerged in interactions with patients and relatives. Organizational factors were also interpreted as external pressure. Internal pressure was interpreted as the nurses’ experience of feeling inadequate in situations where it was difficult to protect the dignity of patients. Discussion: These findings correspond with international studies, which show that ethical problems often arise during decision-making situations. Conclusion: In agreement with the definition of an ethical problem, we found that the nurses experienced uncertainty and disagreements about how situations should be managed. External and internal pressures related to intravenous fluids and/or antibiotics in nursing homes have not been reported in previous studies. Thus, these findings merit further exploration. (shrink)