The role of philosophy and ethics at the edges of medicine

Background The edge metaphor is ubiquitous in describing the present situation in the world, and nowhere is this as clearly visible as in medicine. “The edge of medicine” has become the title of books, scholarly articles, media headlines, and lecture series and seems to be imbued with hype, hope, and aversion. In order better to understand what is at stake at “the edge of medicine” this article addresses three questions: What does “the edge of medicine” mean in contemporary debates on modern medicine? What are the challenges “on the edge of medicine” (in these various meanings of “on the edge”)? How can philosophy and ethics contribute with addressing these challenges? Methods Literature searches in PubMed and Google Scholar are used to identify uses of the phrase “the edge of medicine” while conventional content analysis is used to analyze meanings of and challenges with “the edge of medicine.” These results are then investigated with respect to how philosophy and ethics can address the identified challenges. Results The literature reveals that “the edge of medicine” has many meanings, such as: Border; Margin (of life); Frontier; Forefront; Fringes; Plunge (abyss); Brink (verge); Conflict; and Balancing. In general, the various meanings address four basic challenges: setting limits, keeping control, make meaning, and handling conflicts or aporias. The analysis of each of the meanings of “the edge of medicine” identifies a wide range of important and urgent tasks for the humanities in general, and for philosophy and ethics in particular: 1) clarifying concepts; 2) clarifying assumptions and premises of arguments, methods, advice, and decisions; 3) elaborate new concepts and new theories; 4) conceptualize and handle uncertainty, moral regret, and residue; 5) reveal “the emperor’s new clothes;” 6) identify trends and reflect on their implications; 7) demarcation; and 8) reflecting on goodness in medicine. Conclusion The phrase “the edge of medicine” expresses a wide range of challenges for modern health care. Together with other disciplines philosophy and ethics can and should make crucial contributions at “the edge of medicine,” which is where the future of human beings and societies is created and formed.

Mapping out epistemic justice in the clinical space: using narrative techniques to affirm patients as knowers

Epistemic injustice sits at the intersection of ethics, epistemology, and social justice. Generally, this philosophical term describes when a person is wrongfully discredited as a knower; and within the clinical space, epistemic injustice is the underlying reason that some patient testimonies are valued above others. The following essay seeks to connect patterns of social prejudice to the clinical realm in the United States: illustrating how factors such as race, gender identity, and socioeconomic status influence epistemic credence and associatively, the quality of healthcare a person receives.After describing how epistemic injustice disproportionately harms already vulnerable patients, I propose a narrative therapy intervention. This intervention can help providers re-frame their relationships with patients, in such that they come to view patients as valuable sources of unique knowledge. Though I identify this intervention as a valuable step in addressing clinical epistemic injustice, I call upon medical educators and practitioners to further uplift the voices, perspectives, and stories of marginalized patients.

Exploring perception and usage of narrative medicine by physician specialty: a qualitative analysis

Background Narrative medicine is a well-recognized and respected approach to care. It is now found in medical school curricula and widely implemented in practice. However, there has been no analysis of the perception and usage of narrative medicine across different medical specialties and whether there may be unique recommendations for implementation based upon specialty. The aims of this study were to explore these gaps in research. Methods Fifteen senior physicians who specialize in internal medicine, pediatrics, or surgery (5 physicians from each specialty) were interviewed in a semi-structured format about the utilization, benefits, drawbacks (i.e., negative consequences), and roles pertaining to narrative medicine. Qualitative content analysis of each interview was then performed. Results Three themes emerged from our analysis: roles, practice, and outcomes. Through these themes we examined the importance, utilization, barriers, benefits, and drawbacks of narrative medicine. There was consensus that narrative medicine is an important tool in primary care. Primary care physicians (general internists and general pediatricians) also believed that narrative medicine is not as important for non-primary care providers. However, non-primary care providers (surgeons) generally believed narrative medicine is valuable in their practice as well. Within specialties, providers’ choice of language varied when trying to obtain patients’ narratives, but choice in when to practice narrative medicine did not differ greatly. Among specialties, there was more variability regarding when to practice narrative medicine and what barriers were present. Primary care physicians primarily described barriers to eliciting a patient’s narrative to involve trust and emotional readiness, while surgeons primarily described factors involving logistics and patient data as barriers to obtaining patients’ narratives. There was broad agreement among specialties regarding the benefits and drawbacks of narrative medicine. Conclusions This study sheds light on the shared and unique beliefs in different specialties about narrative medicine. It prompts important discussion around topics such as the stereotypes physicians may hold about their peers and concerns about time management. These data provide some possible ideas for crafting narrative medicine education specific to specialties as well as future directions of study.

The standardization of clinical ethics consultation and technique’s “long encirclement” of humanity: a response to Brummett and Muaygil

In their recent article, Brummett and Muaygil reject Bishop et al.’s framing of the debate over standardization in clinical ethics consultation (CEC) “as one between pro-credentialing procedural and anti-credentialing phenomenological,” claiming that this framing “amounts to a false dichotomy between two extreme approaches to CEC.” Instead of accepting proceduralism and phenomenology as a binary, Brummett and Muaygil propose that these two views should be seen as the extreme ends of a spectrum upon which CEC should be done. However, as evidenced by several inconsistencies within their article, they have failed to fully appreciate the concern animating Bishop et al.’s proposal. Additionally, because of this failure, they do not seem to realize that credentialing ethicists for CEC will only create different problems in Saudi Arabia even as it possibly solves some of the current problems they identify. In this commentary, we highlight and clarify Brummet and Muaygil’s five misunderstandings of Bishop et al. This leads us to conclude that while they claim to be advocating a middle way between proceduralism and phenomenology, in fact they would like for us to standardize another proceduralism, albeit one that incorporates some of the “qualitative” values of American bioethics.

Indigenous knowledge around the ethics of human research from the Oceania region: A scoping literature review

Background Many indigenous people have died or been harmed because of inadequately monitored research. Strong regulations in Human Research Ethics (HRE) are required to address these injustices and to ensure that peoples’ participation in health research is safe. Indigenous peoples advocate that research that respects indigenous principles can contribute to addressing their health inequities. This scoping literature review aims to analyze existing peer reviewed and grey literature to explore how indigenous values and principles from countries of Oceania are incorporated into HRE and the governance of research involving human participants. Methods A scoping literature review framework was used for this study. A search for peer reviewed and grey literature from Google, bibliographies, and electronic databases such as SCOPUS, SPRINGER, Medline (Ovid) and JBI Database of Systematic Reviews was conducted, limited to the years 2002–2020. Sixty (60) documents that focused on indigenous knowledge from Oceania region and HRE were included, from which key findings and themes were synthesized. Results Charting the data showed that more than half the eligible documents were peer-reviewed journal articles (54%). Other sources included: International Declarations on Human Research (8%); book chapters (8%); government documents (8%); HRE Guidelines or protocols (13%); news articles (7%) and PhD thesis (2%). The literature was from Australia, Cook Islands, Guam, New Zealand, Fiji, Samoa, Tonga and Vanuatu, some of which focused specifically on HREs in the Pacific Region. Issues emerging from the literature were grouped into five themes (i) indigenous and cultural principles of HRE; (ii) informed consent in indigenous settings in Oceania; (iii) vulnerability and minority status of indigenous populations exploited for research; (iv) research ethics governance for Oceania indigenous peoples; and (v) research ethics committees in Oceania. Respect, relationship building, and trust were priority indigenous HRE principles that encompass the principles of partnership, capacity building, reciprocity, and equality. Relationship building and trust imply the equal distribution of benefits for indigenous population and researchers. Conclusion Indigenous principles of HRE identified were interconnected and interdependent. Recommendations were to incorporate indigenous principles of research in HRE regulations and processes of all countries with indigenous populations. This is especially pertinent for emerging national research committees in LMIC countries, including Fiji and Tonga. Relationship building among researchers and indigenous populations is key to successful research with indigenous populations. HRE principles important for relationship building include respect that is reciprocal among researchers and indigenous people. Elements of the principle of respect highlighted are empathy, collaboration, sharing of benefits, reciprocity, appreciation, empowerment, protection, safety and awareness of culture and languages. Indigenous ontology from the Oceania region involves spirituality, connectedness to land, religious beliefs and a participatory approach to HRE and should be respected in research. An ethical governance mechanism of HRE is one that incorporates indigenous principles and applications for the purpose of maximizing the protection of the dignity and rights of indigenous peoples of Oceania.

The intractable problems with brain death and possible solutions

Brain death has been accepted worldwide medically and legally as the biological state of death of the organism. Nevertheless, the literature has described persistent problems with this acceptance ever since brain death was described. Many of these problems are not widely known or properly understood by much of the medical community. Here we aim to clarify these issues, based on the two intractable problems in the brain death debates. First, the metaphysical problem: there is no reason that withstands critical scrutiny to believe that BD is the state of biological death of the human organism. Second, the epistemic problem: there is no way currently to diagnose the state of BD, the irreversible loss of all brain functions, using clinical tests and ancillary tests, given potential confounders to testing. We discuss these problems and their main objections and conclude that these problems are intractable in that there has been no acceptable solution offered other than bare assertions of an ‘operational definition’ of death. We present possible ways to move forward that accept both the metaphysical problem - that BD is not biological death of the human organism - and the epistemic problem - that as currently diagnosed, BD is a devastating neurological state where recovery of sentience is very unlikely, but not a confirmed state of irreversible loss of all [critical] brain functions. We argue that the best solution is to abandon the dead donor rule, thus allowing vital organ donation from patients currently diagnosed as BD, assuming appropriate changes are made to the consent process and to laws about killing.

The downgrading of pain sufferers’ credibility

Background The evaluation of pain remains one of the most difficult challenges that healthcare practitioners face. Chronic pain appears to affect more than 35% of the population in the West, and indeed, pain is the most common reason patients seek medical care. Despite its ubiquity, studies in the last decades reveal that many patients feel their pain is dismissed by healthcare practitioners and that, as a result, they are denied proper medical care. Buchman, Ho, and Goldberg (J Bioethic Inq 14:31-42, 2017) point to this phenomenon as a form of “epistemic injustice”: an unfair and harmful downgrading of credibility affecting some individuals and groups, which prevents them from receiving appropriate and beneficial medical care. Methods By exploring the existing literature on this downgrading of patients’ credibility written by healthcare professionals and scholars in medical humanities, I identify and examine the reasons patients are often not believed about their pain and why healthcare is too-often unhelpful or hurtful to people presenting with chronic pain. I also explore to what extent it is possible to forge an alternative epistemological model. Results I suggest that most of the causes of this downgrading of patient’s credibility result from either the difficulty in communicating pain or the widespread belief that pathology is always the result of objective tissue damage. I examine whether pain has to be effectively communicated and have an objective cause in order for it to be deemed credible. In the end, I argue that in the case of pain, both communication and objectivity are highly problematic. Conclusions I conclude by suggesting that, although alternative epistemological models might be impossible to build, believing patients has both moral and clinical benefits, and this warrants further research.

The pharmaceuticalisation of life? A fictional case report of insomnia with a thought experiment

Background The safety of sleeping pills has increased dramatically during the last 100 years, from barbiturates to bensodiazepines to modern day so-called Z-drugs. Methods The circumstances of prescribing sleeping pills in the early 20th century are illustrated by summarizing the main storyline of a novel by Swedish writer Vilhelm Moberg. This is followed by a thought experiment and a theoretical discussion. Results In his 1937 novel Sömnlös (Swedish for sleepless) Vilhelm Moberg portrayed existential and relational distress in relation to insomnia. In a thought experiment, past progresses in sleeping pills safety are projected into the future. Thereby, it is claimed that important issues in the area of philosophy of medicine come to the fore. This leads to a theoretical discussion about broader questions concerning the role of the physician, the goals of medicine (as described by Lennart Nordenfelt), the concept of pharmaceuticalisation (as described notably by sociologist of sleep Simon J. Williams and co-workers), and health enhancement (c.f. Carl Elliott and the alleged wish to be better than well). Conclusion Insomnia is a prism through which important philosophical and sociological questions related to the practice of medicine can be asked.

Transforming trash to treasure Cultural ambiguity in foetal cell research

Background Rich in different kind of potent cells, embryos are used in modern regenerative medicine and research. Neurobiologists today are pushing the boundaries for what can be done with embryos existing in the transitory margins of medicine. Therefore, there is a growing need to develop conceptual frameworks for interpreting the transformative cultural, biological and technical processes involving these aborted, donated and marginal embryos. This article is a contribution to this development of frameworks. Methods This article examines different emotional, cognitive and discursive strategies used by neurobiologists in a foetal cell transplantation trial in Parkinson’s disease research, using cells harvested from aborted embryos. Two interviews were analysed in the light of former observations in the processing laboratories, using the anthropologist Mary Douglas’s concept of pollution behaviour and the linguist, philosopher, psychoanalyst and feminist Julia Kristeva’s concept of the abjective to explain and make sense of the findings. Results The findings indicate that the labour performed by the researchers in the trial work involves transforming the foetal material practically, as well as culturally, from trash to treasure. The transformation process contains different phases, and in the interview material we observed that the foetal material or cells were considered objects, subjects or rejected as abject by the researchers handling them, depending on what phase of process or practice they referred to or had experience of. As demonstrated in the analysis, it is the human origin of the cell that makes it abjective and activates pollution discourse, when the researchers talk of their practice. Conclusions The marginal and ambiguous status of the embryo that emerges in the accounts turns the scientists handling foetal cells into liminal characters in modern medicine. Focusing on how practical as well as emotional and cultural strategies and rationalizations of the researchers emerge in interview accounts, this study adds insights on the rationale of practically procuring, transforming and utilizing the foetal material to the already existing studies focused on the donations. We also discuss why the use and refinement of a tissue, around which there is practical consensus but cultural ambiguity, deserves further investigation.

The worldwide investigating nurses’ attitudes towards do-not-resuscitate order: a review

Background The acceptance or practical application of the do-not-resuscitate order is substantially dependent on internal or personal factors; in a way that decision-making about this issue can be specific to each person. Moreover, most nurses feel morally and emotionally stressed and confused during the process decision-making regarding DNR order. Therefore, the purpose of the present study was to evaluate nurses’ attitudes towards DNR order in a systematic review. Methods This critical survey was conducted using a systematic review protocol. To this end, the most relevant articles published in domestic and foreign databases with no time limits until October 2018 were searched. The inclusion and exclusion criteria were articles on DNR order, studies about nurses’ attitudes, descriptive and analytical research papers, as well as those with download links and full texts. The given articles were also assessed in terms of their quality and their main results were extracted. Results Of the total number of 1663 articles searched in the process of systematic review to investigate nurses’ attitudes towards DNR order, 88 articles were included in the full-text review step and finally 10 articles, meeting the inclusion criteria, were found. Assessing the quality of articles included in this review showed that 8 articles, in general, were of good quality and 2 studies were characterized with moderate quality. The main factors associated with nurses’ attitudes towards DNR order were grouped into three categories of (1) nurses’ attitudes towards DNR order, (2) guidelines for DNR order, and (3) decision-making by patients and their families about DNR order. In most of the studies examined, nurses’ attitudes towards DNR order were reported positive. Conclusion It seemed that nurses were willing to get involved in DNR order and each hospital was recommended to develop a written DNR policy directing individuals and avoiding their confusion in this respect.