Lifelines

There is an imbalance across design disciplines in how the user is theorised, represented and ultimately configured. It is suggested that normative user-centred design, as practiced in product design and human-computer interaction (HCI), can lead to a lack-based approach which, when applied in a health and wellbeing context, tends to align unreflexively with a medicalised view of the person. In contrast, the use of self in research is a concept well-developed in health care ethics and care professions, while the interpersonal relationship is valued and analysed in psychotherapy and counselling research and practice. Inspired by these, this article presents a discussion on the sometimes deeply relational nature of doing design with users when viewed through the lens of the Person-Centred Approach (PCA) (Rogers 1961/1967). A case study is used to illustrate an encounter of relational depth as experienced by students working directly with individuals to design prosthetics. Lifelines is a creative project brief developed by Jivan Astfalck (2008; 2011), which asks students to represent ten significant moments in their own lives through the creative use of materials and found objects. In this case, the brief was altered so that another person (the ‘user’) would be represented. The aim was that the student designers would experience moving beyond implicit conceptions of the user as defined by a need or perceived (dis)ability, and that the intimate and personal nature of identifying and representing significant moments would raise questions about expectations of objectivity in design and research. The case study demonstrates that working in this way can be experienced as profoundly moving, with powerful moments of personal transformation and interpersonal growth. In discussion, it is suggested that through such moments of encounter, it becomes possible to examine the qualities of the relational in action, and to analyse not only problematic processes of othering, but also their converse - meetings at relational depth. The Lifelines brief is proposed as a transformative way for designers to re-engage with the whole person, as both substantial (self-realising) and relational (in time, with others and the world), and as one creative exercise in a potential suite of tools for the strengthening of the “ethical reflex” necessary in Design and HCI (Vandenberghe and Slegers 2016, 514).

Health care ethics programs in U.S. Hospitals: results from a National Survey

Background As hospitals have grown more complex, the ethical concerns they confront have grown correspondingly complicated. Many hospitals have consequently developed health care ethics programs (HCEPs) that include far more than ethics consultation services alone. Yet systematic research on these programs is lacking. Methods Based on a national, cross-sectional survey of a stratified sample of 600 US hospitals, we report on the prevalence, scope, activities, staffing, workload, financial compensation, and greatest challenges facing HCEPs. Results Among 372 hospitals whose informants responded to an online survey, 97% of hospitals have HCEPs. Their scope includes clinical ethics functions in virtually all hospitals, but includes other functions in far fewer hospitals: ethical leadership (35.7%), regulatory compliance (29.0%), business ethics (26.2%), and research ethics (12.6%). HCEPs are responsible for providing ongoing ethics education to various target audiences including all staff (77.0%), nurses (59.9%), staff physicians (49.0%), hospital leadership (44.2%), medical residents (20.3%) and the community/general public (18.4%). HCEPs staff are most commonly involved in policy work through review of existing policies but are less often involved in development of new policies. HCEPs have an ethics representative in executive leadership in 80.5% of hospitals, have representation on other hospital committees in 40.7%, are actively engaged in community outreach in 22.6%, and lead large-scale ethics quality improvement initiatives in 17.7%. In general, major teaching hospitals and urban hospitals have the most highly integrated ethics programs with the broadest scope and greatest number of activities. Larger hospitals, academically affiliated hospitals, and urban hospitals have significantly more individuals performing HCEP work and significantly more individuals receiving financial compensation specifically for that work. Overall, the most common greatest challenge facing HCEPs is resource shortages, whereas underutilization is the most common greatest challenge for hospitals with fewer than 100 beds. Respondents’ strategies for managing challenges include staff training and additional funds. Conclusions While this study must be cautiously interpreted due to its limitations, the findings may be useful for understanding the characteristics of HCEPs in US hospitals and the factors associated with these characteristics. This information may contribute to exploring ways to strengthen HCEPs.

Covid-19 pandemic and future global catastrophic risks as a challenge for health-care ethics

Purpose Current covid-19 pandemic challenges health-care ethics. Ones of the most important challenges are medical resources allocation and a duty to treat, often addressed to medical personnel. This paper suggests that there are good reasons to rethink our health-care ethics for future global catastrophic risks. Current pandemic shows how challenging can be an issue of resources allocation even in a relatively small kind of catastrophic event such as covid-19 pandemic. In this paper, the authors show that any future existential bigger catastrophe may require new guidelines for the allocation of medical resources. The idea of assisted dying is considered as a hypothetical scenario. Design/methodology/approach This is a conceptual work based on conceptual analysis at the intersection of risk studies, health-care ethics and future studies. This study builds the argument on the assumption that the covid-19 pandemic should be treated as a sort of global catastrophic risk. Findings show that there are no such attempts in currently published peer-reviewed academic literature. This is crucial concept for the meta-analysis. This study shows why and how current pandemic can be interpreted in terms of global catastrophic risk even if, literally, covid-19 does not meet all criteria required in the risk studies to be called a global catastrophe. Findings We can expect an emergence of discriminatory selection policy which will require some actions taken by future patients like, for example, genetic engineering. But even then it is inevitable that there will still be a large number of survivors who require medical assistance, which they have no chance of receiving. This is why this study has considered the concept of assisted dying understood as an official protocol for health-care ethics and resources allocation policy in the case of emergency situations. Possibly more controversial idea discussed in this paper is an idea of assisted dying for those who cannot receive required medical help. Such procedure could be applied in a mass-scale during a global catastrophic event. Research limitations/implications Philosophers and ethicists should identify and study all possible pros and cons of this discrimination rule. As this study’s findings suggested above, a reliable point of reference is the concept of substantial human enhancement. Human enhancement as such, widely debated, should be studied in that specific context of discrimination of patients in an access to limited medical resources. Last but not least, scientific community should study the concept of assisted dying which could be applied for those survivors who have no chance of obtaining medical care. Such criteria and concepts as cost-benefit analysis, the ethics of quality of life, autonomy of patients and duty of medical personnel should be considered. Practical implications Politicians and policymakers should prepare protocols for global catastrophes where these discrimination criteria would have to be applied. The same applies to the development of medical robotics aimed at replacing human health-care personnel. We assume that this is important implication for practical policy in healthcare. Our prediction, however plausible, is not a good scenario for humanity. But given this realistic development trajectory, we should do everything possible to prevent the need for the discriminatory rules in medical care described above. Originality/value This study offers the idea of assisted dying as a health-care policy in emergency situations. The authors expect that next future global catastrophes – looking at the current pandemic only as a mild prelude – will force a radical change in moral values and medical standards. New criteria of selection and discrimination will be perceived as much more exclusivist and unfair than criteria applied today.

A Practical Approach to Hospital Visitation During a Pandemic: Responding With Compassion to Unjustified Restrictions

During the COVID-19 pandemic, evidence-based resources have been sought to support decision-making and strategically inform hospitals’ policies, procedures, and practices. While greatly emphasizing protection, most guiding documents have neglected to support and protect the psychosocial needs of frontline health care workers and patients and their families during provision of palliative and end-of-life care. Consequently, the stage has been set for increased anxiety, moral distress, and moral injury and extreme moral hazard. A family-centered approach to care has been unilaterally relinquished to a secondary and nonessential role during the current crisis. This phenomenon violates a foundational public health principle, namely, to apply the least restrictive means to achieve good for the many. Instead, there has been widespread adoption of utilitarian and paternalistic approaches. In many cases the foundational principles of palliative care have also been neglected. No circumstance, even a global public health emergency, should ever cause health care providers to deny their ethical obligations and human commitment to compassion. The lack of responsive protocols for family visitation, particularly at the end of life, is an important gap in the current recommendations for pandemic triage and contingency planning. A stepwise approach to hospital visitation using a tiered, standardized process for responding to emerging clinical circumstances and individual patients’ needs should be considered, following the principle of proportionality. A contingency plan, based on epidemiological data, is the best strategy to refocus health care ethics in practice now and for the future.