Palliative Care in Severe Neurotrauma Patients in the Intensive Care Unit.

Traumatic brain injury (TBI) is a significant cause of mortality and morbidity worldwide and many patients with TBI require intensive care unit (ICU) management. When facing a life-threatening illness, such as TBI, a palliative care approach that focuses on noncurative aspects of care should always be considered in the ICU. Research shows that neurosurgical patients in the ICU receive palliative care less frequently than the medical patients in the ICU, which is a missed opportunity for these patients. However, providing appropriate palliative care to neurotrauma patients in an ICU can be difficult, particularly for young adult patients. The patients' prognoses are often unclear, the likelihood of advance directives is small, and the bereaved families must act as decision-makers. This article highlights the different aspects of the palliative care approach as well as barriers and challenges that accompany the TBI patient population, with a particular focus on young adult patients with TBI and the role of their family members. The article concludes with recommendations for physicians for effective and adequate communication to successfully implement the palliative care approach into standard ICU care and to improve quality of care for patients with TBI and their families.

Patient participation in Dutch ethics support: practice, ideals, challenges and recommendations-a national survey.

BACKGROUND: Patient participation in clinical ethics support services (CESS) 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 (fused and abbreviated hereafter as: PP) 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 (1) goals of CESS, (2) status quo of PP, (3) ideas and ideals concerning PP, and (4) obstacles for PP. DISCUSSION: The four most important findings were that: (1) Patient participation in Dutch CESS is far from standard. (2) Views on patient participation are very much intertwined with the goals of ethics support. (3) Hesitations, fears and perceived obstacles for PP were not on principle and (4) 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 (HCPs). Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs.

Three pitfalls of accountable healthcare rationing.

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.

Should neurosurgeons continue to work in the absence of personal protective equipment during the COVID-19 era?

The COVID-19 pandemic has resulted in a widespread shortage of personal protective equipment (PPE). Many healthcare workers, including neurosurgeons, have expressed concern about how to safely and adequately perform their medical responsibilities in these challenging circumstances. One of these concerns revolves around the pressing question: should providers continue to work in the absence of adequate PPE? Although the first peak of the COVID-19 crisis seems to have subsided and supply of PPE has increased, concerns about insufficient PPE availability remain. Inconsistent supply, limited efficacy, and continued high demand for PPE, combined with the continued threat of a second COVID-19 wave, mean that the issues surrounding PPE availability remain unresolved, including a duty to work. This paper offers an ethical investigation of whether neurosurgeons should perform their professional responsibilities with limited availability of PPE. We evaluate ethical considerations and conflicting duties and thereby hope to facilitate providers in making a well-considered personal and moral decision about this challenging issue.

Ethical triage during the COVID-19 pandemic: a toolkit for neurosurgical resource allocation.

BACKGROUND: The COVID-19 pandemic confronts healthcare workers, including neurosurgeons, with difficult choices regarding which patients to treat. METHODS: In order to assist ethical triage, this article gives an overview of the main considerations and ethical principles relevant when allocating resources in times of scarcity. RESULTS: We discuss a framework employing four principles: prioritizing the worst off, maximizing benefits, treating patients equally, and promoting instrumental value. We furthermore discuss the role of age and comorbidity in triage and highlight some principles that may seem intuitive but should not form a basis for triage. CONCLUSIONS: This overview is presented on behalf of the European Association of Neurosurgical Societies and can be used as a toolkit for neurosurgeons faced with ethical dilemmas when triaging patients in times of scarcity.

Medicine's collision with false hope: The False Hope Harms (FHH) argument.

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.

Health, honesty and happiness: Authenticity and anonymity in social media participation of individuals with multiple sclerosis.

BACKGROUND: Multiple Sclerosis (MS) can impair social participation and lead to isolation. Online platforms could help to increase this participation for individuals with MS, circumventing potential physical, emotional and cognitive barriers. Yet, minimal research has examined the differential impact of online versus face-to face interaction on happiness. OBJECTIVE: In our study we analyzed the relationship between honesty, anonymity, and happiness in individuals diagnosed with MS, who reported using online social networks. METHODS: We merged answers of 440 individuals from the Davidson Social Participation Survey with the NARCOMS Enrollment and Update Surveys. Descriptive analysis, T-tests, Pearson correlations and OLS multivariate regression analysis were conducted. RESULTS: Individuals reported they could be more honest in face-to face interactions than with online contacts, regardless of whether they were anonymous or identifiable. Happiness was associated with honesty or authenticity in in-person interactions. We found a negative association between happiness and honesty for anonymous participants online, and no association between happiness and honesty when using real names. Consistent results emerged for individuals using patient-specific and generic platforms. CONCLUSION: Our study implies that anonymity may not improve happiness of individuals with MS. We need to address structural barriers to enable their in-person interactions.

Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online.

Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.

In-person and online social participation and emotional health in individuals with multiple sclerosis.

PURPOSE: Individuals with multiple sclerosis (MS) sometimes have barriers to social participation. The advent of the internet has created online support systems for social participation such as websites for individuals with MS. However, minimal research has been conducted about determinants of individuals' in-person and online social participation or how types of social participation contribute to emotional well-being. The present study aims are: (1) to assess the role of access to resources and other determinants as enabling in-person and online social participation, and (2) to analyze the association between social participation and emotional health of individuals with MS. METHODS: The sample consisted of 508 individuals diagnosed with relapsing/remitting or secondary/progressive MS. Data from NARCOMS registry and data from original questionnaire on determinants of social participation and emotional health were merged. Logistic and linear regression analyses were performed. RESULTS: Individuals with access to the internet were more likely to participate online with friends (OR 5.47, p < .001) and the community (OR 47.7, p < .001). Individuals who regularly participate in in-person social participation with friends reported being happier (B = .38, p < .001), less depressed (B = -2.01, p < .001), and less anxious (B = -1.21, p < .001) than those who did not. However, there was no evidence of a relationship between emotional health and online social participation. CONCLUSION: Increasing access to in-person social participation with friends will likely have the most positive impact on emotional health. Future research should examine the aspects of online participation that are helpful or harmful.

Shaking Up the Debate: Ensuring the Ethical Use of DBS Intervention Criteria for Mid-Stage Parkinson's Patients.

OBJECTIVES: Deep brain stimulation (DBS) is a well-established treatment for the management of severe motor fluctuations in advanced Parkinson's disease (PD). Until recently, device regulation, medical, and insurance practices limited DBS to patients with advanced stages of PD. In February 2016 this changed, however, when the US Food and Drug Administration (FDA) granted formal approval for the use of brain stimulator in mid-stage PD patients. In this article, we examine whether DBS in mid-stage PD can be ethically justified beyond the FDA approval. MATERIALS AND METHODS: We scrutinize the current risk-benefit profile, the costs-benefit profile, and the capacity for informed consent requirement, to ask if use of subthalamic nucleus (STN) in mid-stage DBS is ethically appropriate. RESULTS: We propose that mid-stage DBS decisions could be appropriate under a shared decision-making model, which embraces a broad quality of life perspective. CONCLUSION: Although it might be too premature to know how the FDA decision will affect medical and insurance practices, we conclude by arguing that revisions to persisting guidelines seems justified both on scientific and ethical grounds.

Enabling Donation after Cardiac Death in the Emergency Department: Overcoming Clinical, Legal, and Ethical Concerns.

BACKGROUND: In light of the growing gap between candidates for organ donation and the actual number of organs available, we present a unique case of organ donation after cardiac death. We hope to open a discussion regarding organ procurement from eligible donors in the prehospital and emergency department setting. CASE: This case study, involving an otherwise healthy man who, after suffering an untimely death, was able to successfully donate his organs, highlights the need to develop an infrastructure to make this type of donation a viable and streamlined option for the future. DISCUSSION: Given the departure from traditional practice in United States transplantation medicine, we bring forth legal and ethical considerations regarding organ donation in the emergency department. We hope that this case discussion inspires action and development in the realm of transplant medicine, with the aim of honoring the wishes of donors and the families of those who wish to donate in a respectful way, while using our medical skills and technologies to afford candidates who are waiting for organs a second chance. CONCLUSIONS: We believe that this case shows that donation after cardiac death from the emergency department, while resource-intensive is feasible. We recognize that in order for this to become a more attainable goal, additional resources and systems development is required.

Neuroethical issues in clinical neuroscience research.

In this chapter, we use the special features of neuroimaging to illustrate research ethics issues for the clinical neurologic sciences, and focus on one particularly compelling case: studies involving first-episode schizophrenic treatment-naïve individuals (FESTNIs) (Eijkholt et al., 2012). FESTNIs are scanned prior to the administration of medication in order to control for the confounding effects of treatment. By concentrating on this program of research, we capture the distinctive ethical challenges associated with neuroimaging research overall, and foreground the issues particular to neuroimaging research involving FESTNIs that have yet to receive sufficient attention in the literature. We highlight assessment of risks and burdens, including risks associated with treatment delays and incidental findings; assessment of benefit, including direct benefit, social value, and scientific quality; subject selection; justice questions related to responsiveness and poststudy access; and, finally, issues related to consent and capacity.

Ethical reproducibility: towards transparent reporting in biomedical research.

Optimism about biomedicine is challenged by the increasingly complex ethical, legal and social issues it raises. Reporting of scientific methods is no longer sufficient to address the complex relationship between science and society. To promote 'ethical reproducibility', we call for transparent reporting of research ethics methods used in biomedical research.

Hopes and fears for professional movement in the stem cell community.

We examine here how the issue of professional migration in stem cell research has been explored in news media, government documents, and the peer-reviewed literature. The results shed light on how patterns of and forces that motivate these movements are depicted and highlight issues of significance to the stem cell community.

Decision-making in stem cell trials for spinal cord injury: the role of networks and peers.

AIMS: The purpose of this study was to characterize the self-perceived role of professionals and personal caregivers in decision-making about participation in stem cell clinical trials by individuals in early post-spinal cord injury time-points. MATERIALS & METHODS: Data were obtained from focus groups and semi-structured individual interviews from two networks: healthcare professionals (e.g., physicians, allied healthcare workers) and personal contacts (family and friends). We transcribed audio-recorded data in extenso and analyzed transcripts using the qualitative method of constant comparison. RESULTS: Results from more than 60 h of data suggest that adequate decision support is difficult to achieve for individuals during the subacute phase of injury. Three major obstacles prevent this goal: the personal dimensions of risk; limited insights into the pathophysiology and recovery process; and deference of each network to the other. CONCLUSION: The data suggest that novel strategies for decision-making processes, such as those involving peer support, are needed to enrich the knowledge base of all stakeholders. The results further underscore the importance of the role that both the academic and private sector play in ensuring the protection of human subjects in these trials.

Picturing neuroscience research through a human rights lens: imaging first-episode schizophrenic treatment-naive individuals.

In this paper we examine imaging research involving first-episode schizophrenic treatment-naive individuals (FESTNIs) through a legal human rights lens; in particular, the lens of the Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Biomedical Research. We identify a number of ethical and legal hot spots highlighted by the Protocol, and offer a series of recommendations designed to ensure the human rights compatibility of this research. Subsequently, we argue that the lack of reporting on design elements related to ethical concerns frustrates commitments at the heart of the human rights approach, namely, transparency and openness to international scrutiny. To redress this problem, we introduce two norms for the first time: ethical transparency, and ethical reproducibility. When concluding, we offer a set of reporting guidelines designed to operationalize these norms in the context of imaging research involving FESTNIs. Though we will not make this case here, we believe that parallel reporting guidelines should be incorporated into other areas of research involving human subjects.