Marleen Eijkholt

The question whether or not patients ought to be involved in clinical ethics interventions (CEI) remains unresolved. While generally it has been recognized that patients’ active participation in health care decisions and processes is important, this is not unequivocally accepted for CEIs. Patient participation in CEI (PP) is common in the United States, but PP seems far from the prevailing practice in Europe. In Europe, CEIs often involve discussions of the ethics issue by the healthcare team only; the patient or proxy is not included, consulted or even informed about such an intervention. In this paper, we submit that policies or standards which resist PP and disable it as an option conflict with procedural and epistemic justice requirements in CEIs. We conceptually develop how the two concepts of procedural justice (PJ) and epistemic justice (EJ) relate to CEIs and to PP. We also engage with four cases to illustrate the risks of injustices and how PP facilitates CEIs to meet justice requirements. We conclude that in settings where CEIs systematically do not involve PP, and where patients are neither asked about the ethics issue nor informed about the intervention, policy and practice presumptions should be adjusted.

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or less standard. While PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs.

A pandemic may cause a sudden imbalance between available medical resources and medical needs where fundamental care to a patient cannot be delivered. Inability to fulfil a professional commitment to deliver care as needed can lead to distress among caregivers and patients. This distress is sometimes alleviated through mechanisms that hide the facts that care is rationed and not all medical needs are met. We have identified three mechanisms that jeopardise accountable and optimal allocation of resources: (1) hidden value judgements that allow rationing under the disguise of triage or prioritisation, (2) disguised conflict of interest between societal and individual patient’s needs and (3) concealed biases in the application of medical tools. Under these three pitfalls decisions of resource allocation and who gets treated are handled as medical decisions: normative decisions are concealed and perceived as falling with the realm of medical judgement. Value judgements and moral agency are hidden to offer a ‘false sense of medical judgement’, while in fact there are several ethical judgements and biases at stake. The three pitfalls entail hidden normative deliberation and are inappropriate for sustainable healthcare delivery and resource allocation. We believe it is necessary to maintain transparency in decision making under conditions of insufficient resources to maintain trust in professional care givers and secure fair treatment allocation. Recognition of the pitfalls, by applying our recommendations, may help to ensure transparent and accountable distribution of care and contribute to public acceptance of the ethics behind rationing.

The goal of this paper is to introduce the false hope harms (FHH) argument, as a new concept in healthcare. The FHH argument embodies a conglomerate of specific harms that have not convinced providers to stop endorsing false hope. In this paper, it is submitted that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine. Although hope serves important functions—it can be ‘therapeutic’ and important for patients’ ‘self-identity as active agents’— the presentation of false hope along the hope continuum entails a misconstrued balancing act. By not speaking up against unrealistic patient and family requests—including some requests for rights to try, resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments—healthcare providers precipitate harms, i.e., the FHH. These harms arise on both individual and communal levels and cannot be ignored. The goal of this paper is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. Instead, this paper seeks to make four points while outlining the FHH argument: consumer medicine and false hope are connected; providers and patients are very vulnerable in the system of consumer medicine; providers have a responsibility to stand up against false hope; and how the FHH argument could perhaps offer a footing to resist giving in to false hope.

Snyder’s book ‘Exploiting hope’ is as relevant as ever. His book is about the hope of desperate individuals seeking treatments that cannot be found in conventional medicine. The book engages with hope in the setting of phase I cancer trials, stem cell interventions, right-to-try laws and crowd funding, offering a new language to explain our discomfort with some of these quests. At the same time the book seems particularly relevant given current events. While despair and quests for novel interventions touched only a few patients with specific conditions up to a year ago, they are now familiar to us all. Early on in the COVID-19 pandemic all of us probably experienced hope for interventions that could save us...

During the COVID-19 pandemic, investigational treatments have been made available to seriously ill patients through so-called expanded access programmes, such as compassionate use and named-patient programmes. Many countries have legal, ethical and professional frameworks in place to promote safe and responsible use of investigational treatments outside of clinical trial settings. However, these frameworks leave room for ambiguities regarding the roles and responsibilities of treating physicians, hospital-based pharmacists, pharmaceutical companies, and other stakeholders, and for practices to differ, not only between countries, but also within countries, between hospitals and individual healthcare providers. Current ambiguities with regard to physicians’ moral duties, for instance, allow physicians to withhold information from patients about options for expanded access, and to forego pursuing such options for their patients. This chapter describes the experiences with the use of Remdesivir and hydroxychloroquine in COVID-19-infected patients in the Netherlands during the first wave of the pandemic, and discusses an open question in relation to treating physicians’ duties, namely vis-à-vis information provision. This chapter proposes a prima facie obligation for healthcare professionals to inform eligible patients about relevant options for expanded access.