Integrating ethics in AI development: a qualitative study.

BACKGROUND: While the theoretical benefits and harms of Artificial Intelligence (AI) have been widely discussed in academic literature, empirical evidence remains elusive regarding the practical ethical challenges of developing AI for healthcare. Bridging the gap between theory and practice is an essential step in understanding how to ethically align AI for healthcare. Therefore, this research examines the concerns and challenges perceived by experts in developing ethical AI that addresses the healthcare context and needs. METHODS: We conducted semi-structured interviews with 41 AI experts and analyzed the data using reflective thematic analysis. RESULTS: We developed three themes that expressed the considerations perceived by experts as essential for ensuring AI aligns with ethical practices within healthcare. The first theme explores the ethical significance of introducing AI with a clear and purposeful objective. The second theme focuses on how experts are concerned about the tension that exists between economic incentives and the importance of prioritizing the interests of doctors and patients. The third theme illustrates the need to develop context-sensitive AI for healthcare that is informed by its underlying theoretical foundations. CONCLUSIONS: The three themes collectively emphasized that beyond being innovative, AI must genuinely benefit healthcare and its stakeholders, meaning AI also aligns with intricate and context-specific healthcare practices. Our findings signal that instead of narrow product-specific AI guidance, ethical AI development may need a systemic, proactive perspective that includes the ethical considerations (objectives, actors, and context) and focuses on healthcare applications. Ethically developing AI involves a complex interplay between AI, ethics, healthcare, and multiple stakeholders.

AI Through Ethical Lenses: A Discourse Analysis of Guidelines for AI in Healthcare.

While the technologies that enable Artificial Intelligence (AI) continue to advance rapidly, there are increasing promises regarding AI's beneficial outputs and concerns about the challenges of human-computer interaction in healthcare. To address these concerns, institutions have increasingly resorted to publishing AI guidelines for healthcare, aiming to align AI with ethical practices. However, guidelines as a form of written language can be analyzed to recognize the reciprocal links between its textual communication and underlying societal ideas. From this perspective, we conducted a discourse analysis to understand how these guidelines construct, articulate, and frame ethics for AI in healthcare. We included eight guidelines and identified three prevalent and interwoven discourses: (1) AI is unavoidable and desirable; (2) AI needs to be guided with (some forms of) principles (3) trust in AI is instrumental and primary. These discourses signal an over-spillage of technical ideals to AI ethics, such as over-optimism and resulting hyper-criticism. This research provides insights into the underlying ideas present in AI guidelines and how guidelines influence the practice and alignment of AI with ethical, legal, and societal values expected to shape AI in healthcare.

One R or the other - an experimental bioethics approach to 3R dilemmas in animal research.

Sacrificial dilemmas such as the trolley problem play an important role in experimental philosophy (x-phi). But it is increasingly argued that, since we are not likely to encounter runaway trolleys in our daily life, the usefulness of such thought experiments for understanding moral judgments in more ecologically valid contexts may be limited. However, similar sacrificial dilemmas are experienced in real life by animal research decision makers. As part of their job, they must make decisions about the suffering, and often the death, of many non-human animals. For this reason, a context-specific investigation of so-called "3R dilemmas" (i.e., dilemmas where there is a conflict between the principles of replacement, reduction, and refinement of the use of animals in research) is essential to improve the situation of both non-human animals and human stakeholders. An approach well suited for such investigation is experimental philosophical bioethics ("bioxphi"), which draws on methods similar to x-phi to probe more realistic, practical scenarios with an eye to informing normative debates and ethical policy. In this article, we argue for a need to investigate 3R dilemmas among professional decision-makers using the tools of bioxphi. In a first step, we define 3R dilemmas and discuss previous investigations of professionals' attitudes in such cases. In a second step, we show how bioxphi is a promising method to investigate the whys and hows of professional decision-making in 3R dilemmas. In a last step, we provide a bioxphi template for 3R dilemmas, give recommendations on its use, explore the normative relevance of data collected by such means, and discuss important limitations.

Rethinking advanced motherhood: a new ethical narrative.

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more "traditional" ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called "older" mother. For this purpose, we start by exploring some of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining "older" motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable.

The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.

BACKGROUND: The use of genome-wide sequencing in pediatric medicine and research is growing exponentially. While this has many potential benefits, the normative and empirical literature has highlighted various ethical issues. There have not been, however, any systematic reviews of these issues. The aim of this systematic review is to determine systematically the spectrum of ethical issues that is raised for stakeholders in in pediatric genome-wide sequencing. METHODS: A systematic review in PubMed and Google Books (publications in English or German between 2004 and 2021) was conducted. Further references were identified via reference screening. Data were analyzed and synthesized using qualitative content analysis. Ethical issues were defined as arising when a relevant normative principle is not adequately considered or when two principles come into conflict. RESULTS: Our literature search retrieved 3175 publications of which 143 were included in the analysis. Together these mentioned 106 ethical issues in pediatric genome-wide sequencing, categorized into five themes along the pediatric genome-wide sequencing lifecycle. Most ethical issues identified in relation to genome-wide sequencing typically reflect ethical issues that arise in general genetic testing, but they are often amplified by the increased quantity of data obtained, and associated uncertainties. The most frequently discussed ethical aspects concern the issue of unsolicited findings. CONCLUSION: Concentration of the debate on unsolicited findings risks overlooking other ethical challenges. An overarching difficulty presents the terminological confusion: both with regard to both the test procedure/ the scope of analysis, as well as with the topic of unsolicited findings. It is important that the genetics and ethics communities together with other medical professions involved work jointly on specific case related guidelines to grant the maximum benefit for the care of the children, while preventing patient harm and disproportionate overload of clinicians and the healthcare system by the wealth of available options and economic incentives to increase testing.

Challenges of paediatric palliative care in Romania: a focus groups study.

BACKGROUND: The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. METHODS: Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. RESULTS: For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. CONCLUSION: Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Digital Technologies for Schizophrenia Management: A Descriptive Review.

While the implementation of digital technology in psychiatry appears promising, there is an urgent need to address the implications of the absence of ethical design in the early development of such technologies. Some authors have noted the gap between technology development and ethical analysis and have called for an upstream examination of the ethical issues raised by digital technologies. In this paper, we address this suggestion, particularly in relation to digital healthcare technologies for patients with schizophrenia spectrum disorders. The introduction of digital technologies in psychiatry offers a broad spectrum of diagnostic and treatment options tailored to the health needs and goals of patients' care. These technologies include wearable devices, smartphone applications for high-immersive virtual realities, smart homes, telepsychiatry and messaging systems for patients in rural areas. The availability of these technologies could increase access to mental health services and improve the diagnostics of mental disorders. In this descriptive review, we systematize ethical concerns about digital technologies for mental health with a particular focus on individuals suffering from schizophrenia. There are many unsolved dilemmas and conflicts of interest in the implementation of these technologies, such as (1) the lack of evidence on efficacy and impact on self-perception; (2) the lack of clear standards for the safety of their daily implementation; (3) unclear roles of technology and a shift in the responsibilities of all parties; (4) no guarantee of data confidentiality; and (5) the lack of a user-centered design that meets the particular needs of patients with schizophrenia. mHealth can improve care in psychiatry and make mental healthcare services more efficient and personalized while destigmatizing mental health disorders. To ensure that these technologies will benefit people with mental health disorders, we need to heighten sensitivity to ethical issues among mental healthcare specialists, health policy makers, software developers, patients themselves and their proxies. Additionally, we need to develop frameworks for furthering sustainable development in the digital technologies industry and for the responsible usage of such technologies for patients with schizophrenia in the clinical setting. We suggest that digital technology in psychiatry, particularly for schizophrenia and other serious mental health disorders, should be integrated into treatment with professional supervision rather than as a self-treatment tool.

Towards a pragmatist dealing with algorithmic bias in medical machine learning.

Machine Learning (ML) is on the rise in medicine, promising improved diagnostic, therapeutic and prognostic clinical tools. While these technological innovations are bound to transform health care, they also bring new ethical concerns to the forefront. One particularly elusive challenge regards discriminatory algorithmic judgements based on biases inherent in the training data. A common line of reasoning distinguishes between justified differential treatments that mirror true disparities between socially salient groups, and unjustified biases which do not, leading to misdiagnosis and erroneous treatment. In the curation of training data this strategy runs into severe problems though, since distinguishing between the two can be next to impossible. We thus plead for a pragmatist dealing with algorithmic bias in healthcare environments. By recurring to a recent reformulation of William James's pragmatist understanding of truth, we recommend that, instead of aiming at a supposedly objective truth, outcome-based therapeutic usefulness should serve as the guiding principle for assessing ML applications in medicine.

Understanding access to professional healthcare among asylum seekers facing gender-based violence: a qualitative study from a stakeholder perspective.

BACKGROUND: When it comes to gender-based violence (GBV), migrant women and girls represent the most vulnerable group. GBV can happen at any stage of migrants' flight and/or during the asylum process. It has severe consequences on their life and health. Victims therefore need timely access to healthcare. This study explores the context GBV victims face when they seek refuge in Switzerland. METHODS: Qualitative methodology was used where we conducted five semi-structured focus groups and three interviews. A total of sixteen stakeholders participated in the study. They were either involved in the asylum process or provided healthcare to asylum seekers. We analyzed the data using framework analysis. RESULTS: Study participants noted lack of confidence of the GBV victims in the legal and in the healthcare systems as major barriers to disclosure of GBV. Since only GBV exerted before fleeing the home country gives the right to asylum, they pointed out that victims do not disclose GBV that took place after they left their home country. Language was identified as a barrier to disclosure of GBV as well as to healthcare access. Continuity of care at the moment of transfer from federal to cantonal (i.e. state) accommodations is another issue that was deemed critical. Study participants felt that health professionals must be trained to identify GBV victims. The first-contact caregiver available to these victims was deemed as the most competent professional that could act as a "GBV coordinator". CONCLUSION: In Switzerland, access to healthcare is guaranteed to all asylum seekers on a legal and structural level. Yet, health seeking by GBV survivors is hindered by factors such as lack of confidence in the legal system, trust in health providers, and continuity of care during the asylum process. Building trust in legal institutions, health structures, and professionals should be enhanced to facilitate disclosure and to strengthen resilience. This includes a healthcare system with competent professionals, support with language and cultural needs, as well as seamless continuity of care beyond cantonal borders.

Evaluation of decision-making capacity in patients with dementia: challenges and recommendations from a secondary analysis of qualitative interviews.

BACKGROUND: Evaluation of decision-making capacity to consent to medical treatment has proved to be difficult in patients with dementia. Studies showed that physicians are often insufficiently trained in the evaluation of decision-making capacity. In this study, we present findings from a secondary analysis of a qualitative interviews with physicians. These interviews were initially used to assess usability of an instrument for the evaluation of decision-making capacity. By looking at difficult cases of decision-making capacity evaluation in patients with dementia, we provide recommendations for such evaluations in clinical practice. METHODS: We used thematic coding to analyse physicians' narratives of problematic decision-making capacity evaluations in patients with dementia to uncover challenging issues of decision-making capacity evaluation. RESULTS: In this study, decision-making capacity evaluations in patients with dementia were mainly perceived as challenging when they pertained to treatment refusals and treatment unrelated circumstances, such as psychiatric consultation, advance directives, and new living arrangements. Furthermore, the physicians reported training needs regarding situation-independent challenges with decision-making capacity evaluation. CONCLUSIONS: Upon further examining self-reported training needs and challenging cases, we have developed recommendations to improve decision-making capacity evaluations in clinical practice. In these recommendations, we argue that being able to evaluate decision-making capacity is an integral part of the informed consent process.

"Undoing" Capacity: The Capability Approach in Pediatrics.

Unlike adults, children are not granted the assumption of having decision-making capacity because their cognitive capacities are not yet fully developed. Still, child participation is increasingly encouraged within the clinical and research context. The trend towards inclusion has been initiated by the United Nations Convention on the Rights of Children (1989). The openness of the convention, however, might lead to contradictory interpretations. The notion of evolving capacities recalls mainstream developmental psychological theories that view the child as an impaired being and may hamper children's right to participation. This shows that policy measures are not a panacea and that other tools are needed to promote children's involvement in medical practice. For this purpose, the authors of this essay aim to "undo" the traditional, cognitive approach to decision-making capacity and to incorporate the conceptual framework of the capability approach in pediatrics. The capability approach encourages parents and health-care professionals to reflect on how they can foster children's role in decision-making by taking into consideration the socio-familial, cultural, and environmental context in which they live. By acknowledging that children's preferences can differ, the capability approach promotes a patient-centered approach.

Factors associated with post-acute discharge location after hospital stay: a cross-sectional study from a Swiss hospital.

BACKGROUND: In 2012, Switzerland introduced the diagnosis-related group hospital payment system. Fearing that vulnerable patients may be discharged early, Acute and Transitional Care (ATC) was introduced to address the nursing care of patients who no longer needed an acute hospital stay. ATC is more costly for patients when compared to other discharge options like rehabilitation while providing less rehabilitative services. This study investigates factors associated with the place of discharge for patients in need of care. METHODS: Data was collected from 660 medical records of inpatients 50 years and older of the municipal hospital Triemli in Zurich, Switzerland. We used stepwise logistic regression to identify factors associated with their discharge into ATC or rehabilitation. RESULTS: Older patients with higher Delirium Observation Scale (DOS), lack of supplementary health insurance, resuscitation order and a lower social network were more likely to be discharged into ATC than rehabilitation. CONCLUSIONS: The association of supplementary health insurance and social network with discharge into ATC or rehabilitation is problematic because patients that are already vulnerable from a financial and social perspective are potentially discharged into a more costly and less rehabilitative post-acute care facility.

Practicality of Acute and Transitional Care and its consequences in the era of SwissDRG: a focus group study.

BACKGROUND: Switzerland recently introduced Acute and Transitional Care (ATC) as a new financing option and a preventive measure to mitigate potential side effects of Swiss Diagnosis Related Group (SwissDRG). The goal of ATC was to support patients who after acute treatment at a hospital require temporary increased professional care. However, evidence is lacking as to the practicality of ATC. METHODS: Using qualitative focus group methodology, we sought to understand the implementation and use of ATC. A purposive sample of forty-two professionals from five Swiss cantons participated in this study. We used a descriptive thematic approach to analyse the data. RESULTS: Our findings first reveal that ATC's implementation differs in the five cantons (i.e. federal states). In two cantons, only ambulatory variant of ATC is used; in one canton only stationary ATC has been created, and two cantons had both ambulatory and stationary ATC but preferred the latter. Second, there are intrinsic practical challenges associated with ATC, which include physicians' lack of familiarity with ATC and its regulatory limitations. Finally, participants felt that due to shorter hospital stays because of SwissDRG, premature discharge of patients with complex care needs to stationary ATC takes place. This development does not fit the nursing home concept of care tailored to long-term patients. CONCLUSION: This empirical study underscores that there is a strong need to improve ATC so that it is uniformly implemented throughout the country and its application is streamlined. In light of the newness of ATC as well as SwissDRG, their impact on the quality of care received by patients is yet to be fully understood. Empirical evidence is necessary to improve these two measures.

The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective.

BACKGROUND: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care. METHODS: Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding. RESULTS: Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children's everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive "word of mouth". CONCLUSIONS: The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.

Continuous Deep Sedation and Euthanasia in Pediatrics: Does One Really Exclude the Other for Terminally Ill Patients?

Debates on morally acceptable and lawful end-of-life (EOL) practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death (CDS). We demonstrate that this reasoning is based on flawed assumptions: (1) CDS is a morally preferable alternative to euthanasia; (2) CDS can meet the same patient needs as euthanasia; (3) children lack the capacity and experience to make EOL decisions; (4) unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices.

Prescription of pain medication in prisons: A comparative analysis of younger and older male prisoners.

PURPOSE: In prison populations, treating pain is particularly challenging, especially for the growing number of older prisoners. The objective was to find out about prevalence, frequency, and types of pain medications prescribed to older prisoners (≥50 years) in comparison with younger prisoners (<50 years). METHODS: Data were collected in Switzerland as part of a study on ageing prisoners' health. Fifteen prisons (out of 26 of the total eligible population) agreed to take part, and data from medical records of 190 older and 190 younger male prisoners were analysed. Descriptive statistics on pain medication prescriptions (excluding drugs used in opioid dependence) were carried out and differences between the 2 age groups tested for statistical significance. RESULTS: More than half of younger and older prisoners were prescribed pain medication during the past 180 days, while 10% of younger and 15% of older prisoners were prescribed pain medication on a daily basis. Nonsteroidal anti-inflammatory drugs and "other analgesics and antipyretics" were most frequently prescribed. Significantly (P < .05), more younger than older prisoners were prescribed NSAIDs and drugs to treat muscle skeletal pain. Tramadol was the opioid most often prescribed. CONCLUSIONS: This is the first empirical study investigating prescriptions of pain medication in Swiss prisoners on a national level. It shows that nonopioid pain medication is an important part of health care provision inside prison, while there are only few prescriptions of strong opioids. Research is needed to investigate whether the standard set by the principle of equivalence is met regarding treatment of pain in prison.

Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records.

PURPOSE: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care. METHODS: Using a standardized data extraction form, a retrospective review of medical records of deceased pediatric patients was conducted. The form captured information on demographics, diagnosis, relapse(s), treatments, decision-making during palliative care, and circumstances surrounding a child's death. RESULTS: For 170 patients, there was information on whether the child received palliative care. Among those, 38 cases (22%) did not receive palliative care. For 16 patients, palliative care began at diagnosis. The mean duration of palliative care was 145 days (Mdn = 89.5, SD = 183.4). Decision to begin palliative care was discussed solely with parent(s) in 60.9% of the cases. In 39.1%, the child was involved. These children were 13.6 years of age (SD = 4.6), whereas those not included were 7.16 years old (SD = 3.9). Leukemia patients were less likely to receive palliative care than the overall sample, and patients with CNS neoplasms received palliative care for a longer time than other patients. CONCLUSIONS: There are still high numbers of late or non-referrals, and even children older than 12 years were not involved in decision-making regarding palliative care. These results do not align with international organizational guidelines which recommend that palliative care should begin at diagnosis.

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children.

Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.

The determinants of individual health care expenditures in prison: evidence from Switzerland.

BACKGROUND: Prison health systems are subject to increasing pressures given the specific health needs of a growing and aging prison population. Identifying the drivers of medical spending among incarcerated individuals is therefore key for health care governance in prisons. This study assesses the determinants of individual health care expenditures within the prisons of the canton of Vaud, a large region of Switzerland. METHODS: We use a unique dataset linking demographic and prison stay characteristics as well as objective measures of morbidity to detailed medical invoice data. We adopt a multivariate regression approach to model total, somatic and psychiatric outpatient health care expenditures. RESULTS: We find that chronic infectious, musculoskeletal and skin diseases are strong predictors of total and somatic costs. Schizophrenia, neurotic and personality disorders as well as the abuse of illicit drugs and pharmaceuticals drive total and psychiatric costs. Furthermore, cumulating psychiatric and somatic comorbidities has an incremental effect on costs. CONCLUSION: By identifying the characteristics associated with health care expenditures in prison, this study constitutes a key step towards a more efficient use of medical resources in prison.