Ethics of the algorithmic prediction of goal of care preferences: from theory to practice

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

An Ethical Framework for Incorporating Digital Technology into Advance Directives: Promoting Informed Advance Decision Making in Healthcare

Despite the presumed value of advance directives, research to demonstrate impact has shown mixed results. For advance directives to serve their role promoting patient autonomy, it is important that patients be informed decision makers. The capacity to make decisions depends upon understanding, appreciation, reasoning, and communication. Advance directives are in part faulty because these elements are often limited. The present paper explores how the application of digital technology could be organized around a framework promoting these four elements. Given the state of digital advancements, there is great potential for advance directives to be meaningfully enhanced. The beneficial effects of incorporating digital technology would be maximized if they were organized around the aim of making advance directives not only documents for declaring preferences but also ethics-driven tools with decision aid functionality. Such advance directives would aid users in making decisions that involve complex factors with potentially far-reaching impact and would also elucidate the users' thought processes to aid those tasked with interpreting and implementing decisions based on an advance directive. Such advance directives might have embedded interactive features for learning; access to content that furthers one's ability to project oneself into possible, future scenarios; review of the logical consistency of stated preferences; and modes for effective electronic sharing. Important considerations include mitigating the introduction of bias depending on the presentation of information; optimizing interfacing with surrogate decision makers and treating clinicians; and prioritizing essential components to respect time constraints. Keywords: Advance Care Planning; Advance Directives; Autonomy; Decision Support Techniques; Digital Technology; Patient Rights

Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians

Background: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. Methods: In a Swiss neurosurgical intensive care unit (ICU), eleven semi-structured interviews were conducted as part of a Database of Individual Patient Experiences (DIPEx) pilot project and thematically analyzed. Interviews were held with two clinicians, five people experiencing aSAH, and four NoK 14–21 months after the bleeding event. Results: Qualitative analysis revealed five main themes from the perspective of clinicians: emergency care, diagnosis and treatment, outcomes, everyday life in the ICU, and decision-making; seven main themes were identified for AFs and NoK: the experience of the aSAH, diagnosis and treatment, outcomes, impact on loved ones, identity, faith, religion and spirituality, and decision-making. Perspectives on decision-making were compared, and, whereas clinicians tended to focus their attention on determining treatment, AFs and NoK valued participation in shared decision-making processes. Conclusions: Overall, aSAH was perceived as a life-threatening event with various challenges depending on severity. The results suggest the need for tools that aid decision-making and better prepare AFs and NoK using accessible means and at an early stage

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care: need and possible application

In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline—whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians—for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making

Aneurysmal subarachnoid hemorrhage and clinical decision-making : a qualitative pilot study exploring perspectives of those directly affected, their next of kin, and treating clinicians

Background: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. Methods: In a Swiss neurosurgical intensive care unit (ICU), eleven semi-structured interviews were conducted as part of a Database of Individual Patient Experiences (DIPEx) pilot project and thematically analyzed. Interviews were held with two clinicians, five people experiencing aSAH, and four NoK 14–21 months after the bleeding event. Results: Qualitative analysis revealed five main themes from the perspective of clinicians: emergency care, diagnosis and treatment, outcomes, everyday life in the ICU, and decision-making; seven main themes were identified for AFs and NoK: the experience of the aSAH, diagnosis and treatment, outcomes, impact on loved ones, identity, faith, religion and spirituality, and decision-making. Perspectives on decision-making were compared, and, whereas clinicians tended to focus their attention on determining treatment, AFs and NoK valued participation in shared decision-making processes. Conclusions: Overall, aSAH was perceived as a life-threatening event with various challenges depending on severity. The results suggest the need for tools that aid decision-making and better prepare AFs and NoK using accessible means and at an early stage

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care : need and possible application

In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline-whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians-for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making

Treatment Decisions and Respect for Autonomy in the Face of Severe Illness in Contemporary Clinical Settings

Treatment decision-making in contemporary clinical practice has tended to tie beneficence and nonmaleficence to respect for patient autonomy. The present thesis aims to highlight that deference to autonomy has masked some of the underlying challenges and more confronting questions when it comes to providing care for those with severe illness or injury in contemporary clinical settings. The thesis consists of six papers divided across three sections, each of which draws attention to the fact that upholding patient autonomy is not a straightforward solution to the challenge of determining how to care for those who are seriously ill , injured, or facing end-of-life. The first section examines questions regarding the care of those with severe, persistent mental illness, exploring attitudes and beliefs around the possibility of making assisted suicide and palliative care available to these populations. The second section explores questions of methodology regarding how to measure whether incapacitated patients have received their preferred care, specifically when it comes to evaluating advance care planning efforts. Determining whether someone’s received care matched his or her preferred care is elusive to measure in practice. The last section explores the challenges of determining preferences in the event of incapacitating illness and injury, considering both the difficulty that someone faces trying to identify and declare his or her preferences in advance and the difficulty clinicians and loved ones face when tasked with making treatment decisions that reflect the will of another. This third section gives attention to the potential role and ethical implications of involving digital technology in such decision-making. The conclusion offers a reflection on the conceptualization of autonomy in contemporary care settings and can be read either at the end or before the main body to inform the reading of the included published papers

Advance care planning evaluation: a scoping review of best research practice

Various indicators have been used to evaluate advance care planning, including completion rates, type of care received, and satisfaction. Recent consensus suggests, though, that receiving care consistent with one’s goals is the primary outcome of advance care planning and assessment should capture this metric. Goal concordant care is challenging to measure, and there is little clarity about how best to do so. The aim of this scoping review is to explore what methods have been used to measure goal concordant care in the evaluation of advance care planning. PubMed, Embase, PsycINFO, CINAHL and Cochrane were searched in September 2020 to identify studies that aimed to track whether advance care planning affected the likelihood of patients receiving care that matched their preferred care. 135 original studies were included for review. Studies used retrospective chart review (36%, n=49), questionnaire (36%, n=48) and interview (31%, n=42), focusing on both patients and proxies. Studies considered both actual care received (55%, n=74) and hypothetical scenarios anticipating possible future care (49%, n=66); some studies did both. While the reviewed studies demonstrate the possibility of working towards a solid methodology, there were significant weaknesses. Notably, studies often lacked enough reporting clarity to be reproducible and, relatedly, key concepts, such as end-of-life or preferred care, were left undefined. The recommendations that follow from these findings inform future research approaches, supporting the development of a strong evidence base to guide advance care planning implementation in practice

Nurses' views on palliative care for those diagnosed with severe persistent mental illness: A Pilot Survey Study in Switzerland

WHAT IS KNOWN ON THE SUBJECT?: In recent years, some have suggested that palliative care approaches be considered for patients diagnosed with severe, persistent mental illness. Palliative care aims to decrease the suffering related to illness rather than focusing on curing the illness. Palliative care approaches for patients diagnosed with severe, persistent mental illness are controversial: Some argue palliative care would improve quality of life while others argue it would negatively affect patients' well-being. A recent survey found that psychiatrists from Switzerland tended to support the idea of palliative care approaches for those diagnosed with severe, persistent mental illness, but little is known about nurses' attitudes or beliefs regarding palliative psychiatry. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: Participating nurses tended to agree that palliative care approaches may be appropriate and even important in caring for those diagnosed with severe, persistent mental illness. Participating nurses tended to prioritize quality of life and respect for patient autonomy. Participating nurses tended to agree palliative sedation may be an appropriate intervention. WHAT THE IMPLICATIONS ARE FOR PRACTICE?: For those diagnosed with severe, persistent mental illness, care that aims to increase daily functioning and quality of life rather than care that looks to cure may be appropriate. Palliative psychiatry should be further explored and better defined. ABSTRACT: Introduction In recent years, palliative care approaches for patients diagnosed with severe, persistent mental illness have been proposed, but remain controversial. Aim/Question The central research question of the present study was whether nurses consider palliative psychiatry appropriate in general and for certain patient types in particular. This pilot study is designed to inform future research. Method A quantitative survey that explored attitudes and beliefs regarding palliative care for those with severe, persistent mental illness. Results The responding 38 nurses tended to agree that palliative care approaches are suitable (73%, n = 24) and even important (62%, n = 21) in treating patients diagnosed with severe, persistent mental illness, including interventions such as palliative sedation (73%, n = 24). Discussion Widespread support among respondents regarding palliative care approaches for those diagnosed with severe, persistent mental illness might be an indication that palliative approaches are already implicitly understood and incorporated into patients' care. More research is needed to determine whether these findings represent nurses' views generally. Implications for practice These finding suggest that palliative psychiatry should be further explored and developed