Stijn Bex, Lorna Guinness, Christophe Gaudet-Blavignac
et al.
Abstract Background Code status determination typically relies on the expected benefits and harms of treatment intensification and patient values and preferences. Resource availability may also influence code status decisions. During the COVID-19 pandemic, the demand for critical care often exceeded the available resources. This study investigated the association between critical care occupancy and code status decisions during the COVID-19 pandemic. Methods We conducted a retrospective cohort study of adult patients hospitalized at Geneva University Hospital for acute COVID-19-related illness during two successive pandemic waves, in spring and autumn 2020. Multivariable logistic regression was used to analyze the association between critical care occupancy at admission and code status attribution while accounting for clinical and demographic characteristics, including age, sex, ROX index (pulse oximetry/fraction of inspired oxygen/respiratory rate), comorbidities, malignancy, nationality, insurance, and socioeconomic status. Results A total of 2,122 patients were included in the analysis. Higher critical care occupancy was associated with an increased likelihood of being assigned an intensive care unit (ICU)-ineligible code status. The odds ratios (ORs) were 1.61 (95% CI 1.11–2.32), 1.59 (1.11–2.28) and 1.71 (1.06–2.76) for critical care occupancy levels of 100–119%, 120–139% and ≥ 140%, respectively, compared with the prepandemic baseline capacity. Other factors significantly associated with the assignment of an ICU-ineligible code status included age 70–79 years (OR 8.56; 95% CI 4.12–17.77), 80–89 years (OR 32.78; 95% CI 16.16–66.50) and ≥90 years (OR 49.04; 95% CI 23.05–104.31) and a higher comorbidity index (OR 1.22; 95% CI 1.07–1.39). Conversely, complementary hospitalization insurance was associated with lower odds of being assigned an ICU-ineligible code status (OR 0.52; 95% CI 0.29–0.92). Conclusions Our study revealed a positive association between critical care occupancy and ICU-ineligible code status, suggesting the presence of implicit triaging during periods of high resource strain. This raises several ethical concerns, including the use of non-consensual triage criteria, lack of transparency and the risk of moral distress for healthcare professionals.
El cuidador informal (mujer en el 55-89% de los casos) experimenta una mayor carga multidimensional conforme se aproxima la muerte del enfermo, lo que añade sufrimiento. El objetivo de este estudio fue reconocer el perfil de las cuidadoras de familiares que se encuentran al final de la vida, desde la ética del cuidado, en la literatura actual. Para ello se han utilizado buscadores: Scielo, PUBMED, Science Direct, Semantic Scholar, ResearchGate, Google Scholar y CINAHL. Se encontraron 10 artículos en español, inglés y portugués; se integró literatura de Suiza, una colaboración Nigeria-Uganda-Zimbabwe, Turquía, Brasil, España, Colombia, Reino Unido, Islandia, Noruega. De este análisis se deduce que la cuidadora familiar —ya sea dentro del hogar o vinculada a una profesión como la enfermería— es la principal responsable del cuidado de las personas vulnerables (enfermos, discapacitados), independientemente del país de origen, según la literatura revisada. Y concluimos de este análisis que el bienestar, la calidad de vida y preservación de la dignidad del cuidador informal fundamentan el acompañamiento integral del enfermo, con apoyo de cuidados paliativos, generación de políticas sanitarias procuidador, generando un trato más humano y compasivo.
Medical philosophy. Medical ethics, Business ethics
Karel-Bart Celie, Joseph W Mocharnuk, U. S. Kanmounye
et al.
The paradigm of values adopted by the global health community has a palpable, albeit often unseen, impact on patient health care. In this Viewpoint, we investigate an inherent tension in the core values of medical ethics and clinical practice that could explain why paediatric health care faces resource constraints despite compelling economic and societal imperatives to prioritise child health and wellbeing. The dominant narrative in the philosophy of medicine tends to disproportionately underscore values of independence and self-determination, which becomes problematic in the context of paediatric patients, who by their very nature epitomise vulnerability and dependence. A double-jeopardy situation arises when disadvantaged children see their inherent dependence leveraged against them. We illustrate this predicament through specific examples relating to rights and obligations and to autonomy. Alternative value perspectives-communitarianism and relational autonomy-might offer more robust protection for vulnerable children. A shift away from the dominant narrative towards a more explicit and inclusive discussion of values is necessary. Such a shift requires giving a legitimate platform to diverse perspectives, with the presumption that collective moral progress is possible; this endeavour is embodied by global bioethics. Successful implementation of global bioethics, in turn, hinges on close collaboration between practicing clinicians and bioethicists. Taking global bioethics seriously and actively pursuing collaboration could help the global health community achieve more equitable health care.
This research examines the contentious issue of euthanasia and physician-assisted suicide in the context of China's unique conditions. Historically, the debate over euthanasia has been influenced by moral philosophy and ethics, and euthanasia is illegal in China at present. The research explores the difficulty in making euthanasia legalized across five key dimensions: financial, medical, social, legal, and psychological factors. We conclude that while there is a desire among some terminally ill patients for euthanasia, the current situation in China makes it unsuitable for legalization. The profound question of one's right to die remains a significant moral and judicial challenge, indicating the need for continued dialogue and nuanced understanding of this complex issue.
Abstract This issue of The Journal of Medicine and Philosophy is unified by a theme of what contributes to and detracts from patient well-being. I highlight this unifying thread through five of this issue’s contributions, dividing them according to whether they are predominantly about what diminishes or enhances the well-being of patients. Three of them are more directly relevant to whether certain actions diminish well-being, and two of them touch more closely on what promotes well-being. Although these papers are generally focused on what is good or detrimental for patients, their insights are also relevant to the nature of human flourishing.
Madison K. Kilbride, Lisa Jay Kessler, Brigitte Cronier
et al.
PurposeWith few exceptions, research on consumer genetic testing for hereditary cancer risk has focused on tests with limited predictive value and clinical utility. Our study advances the existing literature by exploring the experiences and behaviors of individuals who have taken modern consumer genetic tests for cancer susceptibility that, unlike earlier tests, screen for medically significant variants.MethodsWe interviewed 30 individuals who had undergone consumer genetic testing for hereditary cancer risk between 2014 and 2019. We explored participants’ pre-test sentiments (7 items), experiences receiving results (5 items), behavioral and health-related changes (6 items), and attitudes and beliefs (3 items). Data were analyzed for thematic content.ResultsMost participants reported a personal (n = 6) and/or family history (n = 24) of cancer, which influenced their choice to pursue testing. Before testing, most participants did not consult with a physician (n = 25) or receive genetic counseling (n = 23). Nevertheless, the majority felt that they understood test-related information (n = 20) and their results (n = 20), though a considerable number reported experiencing negative emotions related to their results. Most also shared their results with family members (n = 27). Overall, participants’ attitudes towards consumer genetic testing for cancer risk were predominantly positive (n = 23).ConclusionThis study offers new insights into how individuals use and perceive modern consumer genetic tests for hereditary cancer risk, focusing on their perceptions of the risks, benefits, and limitations of these services. Understanding test-takers’ perspectives can potentially inform improvements aimed at ensuring that tests meet users’ needs and deliver clinically valuable genetic risk assessments.
Carl Tollef Solberg, Mathias Barra, Lars Sandman
et al.
Abstract The overarching aim of this article is to scrutinize how severity can work as a qualifier for the moral impetus of malady. While there is agreement that malady is of negative value, there is disagreement about precisely how this is so. Nevertheless, alleviating disease, injury, and associated suffering is almost universally considered good. Furthermore, the strength of a diseased person’s moral claims for our attention and efforts will inevitably vary. This article starts by reflecting on what kind of moral impetus malady incites. We then analyze how severity may qualify this impetus. We do so by discussing the relationship between severity and need, well-being and disvalue, death, urgency, rule of rescue, and distributive justice. We then summarize our thoughts about severity as a moral qualifier. We conclude that severity is, and should continue to be seen, as a morally significant concept that deserves continued attention in the future.
Photo by ANIRUDH on Unsplash
INTRODUCTION
Genes are the most foundational physical unit of a human, coding for every phenotypic characteristic that a human exhibits.[1] Thus, some view the editing of genes as the alteration of one’s physical nature. The extent to which gene-editing, using technology such as CRISPR, alters one's identity is an open issue. Answering this question requires exploring what constitutes human identity (physical or mental forms, or both) and the role DNA plays. This philosophical question concerns the role of the body in the conception of oneself and how fundamental changes to one’s body alter that conception. As gene-editing technologies continue to be refined and implemented in humans, this question is especially relevant. Its answer can alter the decisions society makes about the use of gene-editing technology in humans. Alterations to one’s physical form through gene-editing change one’s physical makeup. Gene-editing causes modifications that span both realms of one’s sense of self because physical identity can affect mental identity. This paper explores philosophical approaches to identity and the relationship between body and mind, arguing that physical changes have significant capacity to alter emotions and mental status in ways that may shape identity.
I. CRISPR and Gene-Editing Capability
Scientists can use gene-editing to rectify the genetic flaws that cause genetic disorders. Trisomy 21, or Down Syndrome, for example, is caused by an additional 21st chromosome in a person’s genome. Deletion of this extra chromosome through gene-editing would erase the disease, changing the person’s genomic foundation and life. They would no longer need to manage the effects of trisomy 21. Gene-editing in the case of trisomy 21 impacts identity. An analysis of perspectives on the link between trisomy gene-editing and identity revealed a split between those who viewed trisomy as separate from identity and those who viewed it as fundamental. Participants favoring a connection between trisomy and identity were more likely to oppose gene-editing, as they believed it would bring fundamental changes to who the person is.[2] Discussion of the extent to which gene-editing impacts identity is important in informing these opinions and, in turn, the policies society implements on the use of gene-editing. Somatic gene-editing, performed in existing people rather than an embryo, proposes a unique case. Many view somatic editing as “similar to other medical treatments” rather than a complete alteration to one’s identity because it is only used in cells in specific tissues to fix symptoms, not the entire disease. For trisomy 21, somatic gene-editing will only be possible in specific tissues and cells of the body, such as in the nerve cells that cause muscle weakness in Down Syndrome patients, since it is not yet possible to change every cell carrying the genetic flaw.[3] Researchers can treat other diseases more completely with gene-editing. To fix the single nucleotide mutation that causes sickle cell disease, for example, researchers can edit the red bone marrow cells extracted from patients, edit them using CRISPR, and reintroduce them into the patient.[4] Gene-editing enables a more comprehensive solution for sickle cell disease in existing people, but it entails the same genome editing as with trisomy. Regardless of the disease or somatic or germline cell targeting, gene-editing alters the DNA a human carries. By exploring the most basic implications of that alteration on human identity, this paper will define the relationship between gene-editing and identity.
II. Views on Physical Identity
Some may view a human’s physical nature as their only nature and thus the sole component of identity. Reductive physicalism proposes that the world is made of only physical components.[5] Reductive physicalists challenge the existence of the mind or a higher power by arguing that all processes can be broken down into their physical components. By this reasoning, humans are a collection of atoms and molecules compartmentalized into cells that perform all human functions. By suggesting that humans are entirely physical in nature, this theory proposes that one’s physicality must constitute identity. In A Treatise of Human Nature, David Hume alludes to the essential role of physicality in identity. Although Hume also discusses the role of a non-physical mind in the processing of perceptions, Hume states that “after the dissolution of my body, I should be entirely annihilated.”[6] The destruction of one’s being, one’s identity, when one ceases to physically exist reinforces the idea that humans are solely physical in nature. Applying reductive physicalism, the dependence of identity on physicality supports that changing one’s physicality through gene-editing will change one’s identity.
In Being and Nothingness, Jean-Paul Sartre argues that a human confirms his existence when he sees “the other” looking at him, becoming an object rather than a subject. Describing one’s sudden self-consciousness and resulting shame, Sartre poses “the look” as essential in one’s formation of a sense of self.[7] Since the body is recognized by “the other,” the pre-reflective cogito suggests that, without the body, one would not be able to recognize their own existence. Under Sartre’s argument, a physical body is a precursor to identity. However, gene-editing by altering the physical characteristics of a human, such as the shape of red blood cells in sickle cell disease patients, generally leaves the body intact. One would still be perceived by “the other” after gene-editing and have their identity confirmed. Sartre’s “the look” reinforces the importance of the body. Yet gene-editing would not impact one’s being an object of another.
III. Mind and Body Combine in Human Identity
In philosophy, mind-body dualism means that humans are composed of mental and physical substances. These forms of an individual are distinct yet inextricably interconnected.[8] René Descartes introduced mind-body dualism to argue the existence of a mind without disputing the existence of a body. In his Cogito Theory, Descartes states, “I think, therefore I am.” According to Descartes, the mind is an indivisible substance that coexists with but is distinct from the body because it lacks shape and physicality.[9] Descartes confirms his existence by the fact that his mind is a “thinking thing” rather than by the other’s recognition of one’s body, as Sartre does. The idea of a non-physical aspect to humans challenges reductive physicalism and provides the space for something more than the body to define a human. The mind confirms existence and thereby grants identity, suggesting not only that the mind exists, but also that it is more central to identity than the body. This view aligns with current views about identity. Since Descartes regards the mind and body as two distinct substances, in his view, the physical changes caused by gene-editing do not directly influence the mind. Gene-editing alters the molecules in genes, but according to dualism, the mind is not composed of atoms like the body is. A genetic change would not penetrate the mind. The distinction between the mental and physical aspects of identity demonstrates how gene-editing may not have substantial power over one’s identity. Since Descartes prioritizes the mental aspect of identity over the physical, gene-editing’s effect on identity appears even more limited.
IV. Mind-Body Philosophies
Other philosophical viewpoints further support a mental aspect of human identity. In De Anima, Aristotle delineates that the body is a manifestation of the mind, which is a manifestation of the soul.[10] Although the mind and body are two essential, coexistent aspects of a human, the body comes from, and thus relies on, the mind. The mind, as the origin of the body, frames it as more central to human existence. This postulates that the changes to physical identity induced by gene-editing technologies may not directly influence the mental aspect of identity because the mind does not stem from, and thus is not dependent on, the body. The mind’s more direct connection to the soul cements its larger role in identity because non-secular philosophy views the soul as the core, eternal aspect of a human. The superiority of the mind over the body regarding identity demonstrates gene-editing’s limited influence on identity.
In A Treatise of Human Nature, Hume suggests that identity is formed based on perceptions, reinforcing the role of the mind. Perceptions, which originate as a physical sensation, inspire feelings and thoughts, an aspect of one’s mind. Hume gives the example of feeling the warmth of a fire.[11] The emotions that arise are processed and stored in the mind. The accumulation of perceptions from different experiences shapes one’s identity. A traumatic event or significant accomplishment often becomes part of one’s sense of self because of the perceptions one acquires. Hume’s proposition that successive perceptions forms the mind, which are important to identity, further demonstrates that the mind is an aspect of identity. Under such a viewpoint, gene-editing would appear restricted in its ability to change identity, as it alters the body but not the mind. DNA cannot change the experiences and thoughts encoded in one’s mind. One may argue that scars on one’s body, rather than thoughts in one’s mind, are the marks of one’s perceptions, like a burn mark from touching a hot stove. However, the memories and emotions of an experience that a scar represents are deeper than the scar itself. A scar on a person has more meaning than a scar on a wax figure, a purely physical being, because of the mental associations with the scar in the person’s mind. Thoughts residing in the mind contribute to one’s identity, highlighting the role of the mind in a human's sense of self.
Although gene-editing in non-neuronal cells cannot directly alter one’s thoughts, the processing of perceptions to form mental identity depends on the physical aspect of humans. Hume proposes that the body mediates the outside world and the mind, detecting stimuli and relaying information to the mind. This communicative relationship between the mind and the body, expressed in mind-body dualism, proposes that physical changes caused by gene-editing could affect how and when external stimuli are detected. This indirect consequence that gene-editing can have on the mind opens the discussion of how physical genetic changes could affect mental identity despite the immaterial nature of the mind.
V. Current Scientific Understanding of the Mind-Body Relationship
There is significant medical research on the relationship between the physical body and emotions like happiness, anger, and depression. Modern science sees many emotions as linked to the physical. Although gene-editing does not directly change the mind, it can be affected by those physical changes. It is well-known that there is a “functionally integrated relationship between mind and body.”[12] This “relationship” suggests that the mind and body do not function separately but rather influence each other. For example, replacing bad gut bacteria with good gut bacteria in animals and humans can “significantly alter mood and emotional functions.”[13] Gut bacteria is a purely physical component of the body, while mood and emotion are more mental. The influence of the physical on the mental illustrates the effect of the body’s state on the mind. The two-way communication that the mind and body exhibit have important consequences for the role of DNA in identity. Genetic alterations caused by CRISPR, for example, may affect the mental aspect of identity. Researchers can use CRISPR to cure a sickle cell disease patient by changing just one nucleotide in a human’s genome.[14] The editing of the patient’s genome changes their physical identity because genes are a physical component of humans, but mental changes can also result. No longer suffering from the debilitating pain of a chronic disease, the patient’s mood and outlook on life may shift. The integrated mind-body relationship suggests that gene-editing may have a broader impact on identity than anticipated, affecting both the body and, indirectly, the mind.
VI. Mind and Brain Philosophy
The effects of gene-editing on the mind can be more direct when the genes edited are associated with the brain. One theory explaining this phenomenon is the Mind-Brain Identity Theory. This theory postulates that “states and processes of the mind are identical to states and processes of the brain” even though the mind is non-physical.[15] Therefore, changes to the brain will correlate with changes to the mind and, in turn, affect mental identity. Using CRISPR to correct the genes that cause Huntington's Disease, for example, would improve the physical conditions in the brain that cause its symptoms. According to the Mind-Brain Identity theory, it would improve one’s mental state as a result. If a mistake occurs and the condition worsens, or researchers edit beyond correcting the disorder, the negative consequences in the brain would correlate with a worsened state of mind. The direct correlation between the mind and brain increases the risks of gene-editing. The Mind-Brain Theory amplifies gene-editing’s effect on identity because it suggests physical changes can have not only indirectly, but also directly, impact on mental identity.
CONCLUSION
Gene-editing alters the physical body. Due to the integrated mind-body relationship, it can also directly and indirectly modify mental identity. Mind-body dualism, as opposed to reductive physicalism, yields an understanding of identity that parallels the way mind-body connections are currently understood. Current science suggests that mood and emotion may be more squarely tied to the physical. Identity likely depends on some combination of the physical and mental. Framing mental aspects, including emotions, personality, and thoughts, as immaterial and genes as physical could lead to the overuse of gene-editing technology for physical purposes like disease prevention, solutions, or enhancement. Mind-body dualism forms the foundation for gene-editing’s nuanced, far-reaching impact on one’s sense of self. Identity defines an individual, both to themselves and others. The potential for unknown or undesired effects of gene-editing on identity calls for balancing the technology’s benefit to human health with its potentially negative impact on identity. The philosophical and ethical underpinnings should help inform public policy and scientific engagement as gene-editing becomes more influential in medicine.
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[1] “The predominant current day meaning of genotype is some relevant part of the DNA passed to the organism by its parents. The phenotype is the physical and behavioral traits of the organism, for example, size and shape, metabolic activities, and patterns of movement.” Taylor, Peter and Richard Lewontin, "The Genotype/Phenotype Distinction", The Stanford Encyclopedia of Philosophy (Summer 2021 Edition), Edward N. Zalta (ed.), URL = <https://plato.stanford.edu/archives/sum2021/entries/genotype-phenotype/>.
[2] Elliott, Kathryn, et al. “‘I Wouldn’t Want Anything That Would Change Who He Is.’ the Relationship between Perceptions of Identity and Attitudes towards Hypothetical Gene-Editing in Parents of Children with Autosomal Aneuploidies.” SSM - Qualitative Research in Health, Elsevier, Dec. 2022, www.sciencedirect.com/science/article/pii/S2667321522001135.
[3] Watson-Scales, Sheona et al. “Analysis of motor dysfunction in Down Syndrome reveals motor neuron degeneration.” PLoS genetics vol. 14,5 e1007383. 10 May. 2018, doi:10.1371/journal.pgen.1007383
[4] Cross, Ryan. “CRISPR edits sickle cell mutation” C&EN Global Enterprise 94 (41), 5-5, October 17, 2016. https://pubs.acs.org/doi/10.1021/cen-09441-notw1
[5] Stoljar, Daniel. “Physicalism.” Stanford Encyclopedia of Philosophy. Stanford University, May 25, 2021. https://plato.stanford.edu/entries/physicalism/.
[6] Hume, David. “Of Personal Identity.” Essay. In A Treatise of Human Nature. Project Gutenberg, n.d.
[7] Sartre, Jean-Paul. Being and Nothingness, n.d.
[8] Descartes, René. Meditations on First Philosophy. Yale University, n.d.
[9] Descartes, René. Meditations on First Philosophy. Yale University, n.d.
[10] Aristotle. “The Internet Classics Archive: De Anima (On the Soul) by Aristotle.” The Internet Classics Archive | On the Soul by Aristotle, n.d. http://classics.mit.edu/Aristotle/soul.html.
[11] Hume, David. “Of Personal Identity.” Essay. In A Treatise of Human Nature. Project Gutenberg, n.d.
[12] News. “A Neurosurgeon and a Philosopher Debate Mind vs. Body.” Mind Matters, February 28, 2022. https://mindmatters.ai/2022/02/a-neurosurgeon-and-a-philosopher-debate-mind-vs-body/.
[13] Jasanoff, Alan. The Biological Mind How Brain, Body, and Environment Collaborate to Make Us Who We Are. Cambridge: Basic Books, 2018.
[14] Frangoul, Haydar et al. “CRISPR-Cas9 Gene Editing for Sickle Cell Disease and β-Thalassemia.” The New England journal of medicine vol. 384,3 (2021): 252-260. doi:10.1056/NEJMoa2031054
[15] Smart, J. J. C. “The Mind/Brain Identity Theory.” Stanford Encyclopedia of Philosophy. Stanford University, May 18, 2007. https://plato.stanford.edu/entries/mind-identity/.
Abstract Introduction Dementia diseases, especially Alzheimer’s disease (AD), are of considerable importance in terms of social policy and health economics. Moreover, against the background of the current Karlsruhe judgement on the legalisation of assisted suicide, there are also questions to be asked about medical humanities in AD. Methodology Relevant literature on complementary forms of therapy and prognosis was included and discussed. Results Creative sociotherapeutic approaches (art, music, dance) and validating psychotherapeutic approaches show promise for suitability and efficiency in the treatment of dementia, but in some cases still need to be scientifically tested. Biomarker-based early diagnosis of dementia diseases is increasingly becoming a subject of debate against the background of the Karlsruhe ruling. Discussion Needs-oriented and resource-enhancing approaches can make a significant contribution to improving the quality of life of people with dementia. The discussion on the issue of “assisted suicide” should include questions of the dignity and value of a life with dementia. Outlook The integrative dementia therapy model can be complemented by a religion- and spirituality-based approach. Appropriate forms of psychotherapy should be scientifically evaluated.
Reetta P. Piili, Pekka Louhiala, Jukka Vänskä
et al.
Abstract Background Debates around euthanasia and physician-assisted suicide (PAS) are ongoing around the globe. Public support has been mounting in Western countries, while some decline has been observed in the USA and Eastern Europe. Physicians’ support for euthanasia and PAS has been lower than that of the general public, but a trend toward higher acceptance among physicians has been seen in recent years. The aim of this study was to examine the current attitudes of Finnish physicians toward euthanasia and PAS and whether there have been changes in these attitudes over three decades. Methods A questionnaire survey was conducted with all Finnish physicians of working age in 2020 and the results were compared to previous studies conducted in 1993, 2003 and 2013. Results The proportions of physicians fully agreeing and fully disagreeing with the legalization of euthanasia increased from 1993 to 2020 (from 5 to 25%, p < 0.001, and from 30 to 34%, p < 0.001, respectively). The number of physicians, who expressed no opinion for or against euthanasia (cannot say) decreased from 19 to 5% (p < 0.001) during the same period. The proportion of physicians having no opinion (cannot say) of whether a physician should be punished for assisting in a suicide decreased from 20 to 10% (p < 0.001). Conclusions This study shows that Finnish physicians’ ambivalence toward euthanasia and PAS has decreased. The ongoing debate has probably forced physicians to form more solid opinions on these matters. Our study highlights that attitudes toward euthanasia and PAS are still divided within the medical profession.
Fatemeh Ghayour Kazemi, Fatemeh Shahhabizadeh, Maryam Saf Ara
et al.
Background and Objectives: Breast cancer is the most commonly diagnosed cancer in women which can cause spiritual distress in them. This study aims to assess the effects of mindfulness-based schema therapy (MBST) and transdiagnostic intervention on spiritual distress of women with breast cancer.
Methods: This is a quasi-experimental study (Clinical trial) with a pre-test/post-test/ follow-up design using a control group. Participants were 41 women with breast cancer referred to Omid and Imam Reza hospitals in Mashhad, Iran during 2017-2020, who were selected using a convenience sampling method and randomly assigned into two experimental groups and one control group. For both experimental groups, the intervention was performed at ten weekly sessions. The used instrument was the Spiritual Distress Scale of Ku et al. Data were analyzed using repeated measures analysis of variance and Bonferroni post hoc test in SPSS software, version 25 software.
Results: There was a significant difference in the mean scores of spiritual distress in the experimental groups compared to the control group in the post-test and follow-up phases (P<0.001). There was no significant difference between the effectiveness of transdiagnostic intervention and MBST in the post-test and follow-up phases (P>0.05).
Conclusion: Both transdiagnostic intervention and MBST can reduce the spiritual distress of women with breast cancer.
Abstract Background The pursuit of a cure for HIV is a high priority for researchers, funding agencies, governments and people living with HIV (PLWH). To date, over 250 biomedical studies worldwide are or have been related to discovering a safe, effective, and scalable HIV cure, most of which are early translational research and experimental medicine. As HIV cure research increases, it is critical to identify and address the ethical challenges posed by this research. Methods We conducted a scoping review of the growing HIV cure research ethics literature, focusing on articles published in English peer-reviewed journals from 2013 to 2021. We extracted and summarized key developments in the ethics of HIV cure research. Twelve community advocates actively engaged in HIV cure research provided input on this summary and suggested areas warranting further ethical inquiry and foresight via email exchange and video conferencing. Discussion Despite substantial scholarship related to the ethics of HIV cure research, additional attention should focus on emerging issues in six categories of ethical issues: (1) social value (ongoing and emerging biomedical research and scalability considerations); (2) scientific validity (study design issues, such as the use of analytical treatment interruptions and placebos); (3) fair selection of participants (equity and justice considerations); (4) favorable benefit/risk balance (early phase research, benefit-risk balance, risk perception, psychological risks, and pediatric research); (5) informed consent (attention to language, decision-making, informed consent processes and scientific uncertainty); and (6) respect for enrolled participants and community (perspectives of people living with HIV and affected communities and representation). Conclusion HIV cure research ethics has an unfinished agenda. Scientific research and bioethics should work in tandem to advance ethical HIV cure research. Because the science of HIV cure research will continue to rapidly advance, ethical considerations of the major themes we identified will need to be revisited and refined over time.
E. J. Verweij, Lien De Proost, Lien De Proost
et al.
In this paper we present an initial roadmap for the ethical development and eventual implementation of artificial amniotic sac and placenta technology in clinical practice. We consider four elements of attention: (1) framing and societal dialogue; (2) value sensitive design, (3) research ethics and (4) ethical and legal research resulting in the development of an adequate moral and legal framework. Attention to all elements is a necessary requirement for ethically responsible development of this technology. The first element concerns the importance of framing and societal dialogue. This should involve all relevant stakeholders as well as the general public. We also identify the need to consider carefully the use of terminology and how this influences the understanding of the technology. Second, we elaborate on value sensitive design: the technology should be designed based upon the principles and values that emerge in the first step: societal dialogue. Third, research ethics deserves attention: for proceeding with first-in-human research with the technology, the process of recruiting and counseling eventual study participants and assuring their informed consent deserves careful attention. Fourth, ethical and legal research should concern the status of the subject in the AAPT. An eventual robust moral and legal framework for developing and implementing the technology in a research setting should combine all previous elements. With this roadmap, we emphasize the importance of stakeholder engagement throughout the process of developing and implementing the technology; this will contribute to ethically and responsibly innovating health care.
Akram Hashemi, F. Bahmani, Saeedeh Saeedi Tehrani
et al.
Background: Research ethics committees are comprised of policymakers, supervisors, and decision-makers and aim at increasing adherence to professional ethics standards in conducting health-related research. The existential philosophy of these committees is to preserve the patients’ health, maintain and promote public trust in health care providers, protect the rights of both patients and health care providers, and promote organizational ethics. However, this task can be complex and challenging during a public health emergency. Research ethics committees set the standard of research in the emergency situations through defining which research has the potential to promote the quality of response to a public health emergency. Methods: This study aims at collecting and classifying the valuable experiences of the research ethics committee members and reviewers during the early days of the COVID-19 epidemic in Iran University of Medical Sciences, one of the major universities in Tehran. It provides a basic understanding of the key concepts and challenges in reviewing and approving research by research ethics committees and the recommendations to overcome these challenging issues. Results: To accelerate the review process of COVID-19 research proposals, the scientific, methodological and ethical review panel was integrated as a large committee called ‘IUMS Corona Research Team’. The first meeting was held on March 7, two weeks after the official announcement of the first case of the disease and is continued once a week. A total of 130 projects have been discussed and evaluated in this committee, among which 83 proposals were approved after modification. Conclusion: An interdisciplinary approach supports a flexible and effective scientific and ethical review of research leading to more protection of research subjects as well as promotion in the treatment and management of the pandemic ahead.
There are many lessons that bioethics can learn from the Holocaust. Forefront are the lessons from the Nuremberg trials and the formation of research ethics. An often-overlooked lesson is how the Nazi regime was able to construct a hierarchy in such a way that influenced people to act in horrendous ways. Fernandes & Ecret, writing in Conatus – Journal of Philosophy 4, no. 2 (2019), highlight the influence of hierarchy on the moral silence of nurses and physicians within the Nazi regime. While we greatly enjoyed the paper, and think it is an important contribution, we find several misrepresentations of current bioethical discourse. There is not a global acceptance of euthanasia or medical aid in dying, the contemporary position in bioethics does not favor removal of conscience-based protections, and the lack of personal conscience-based protections was not the main factor in the analysis of Nazi medical hierarchy. The authors’ overall conclusion that their analysis suggests the importance of strengthening personal conscience-based objections to prevent medical hierarchy from influencing immoral behavior misses the more significant issue of institutional behavior. Instead, we argue, that the lessons from the analysis of Nazi nurses and physicians speak to the importance of protecting patients from institutional conscience-based objections that violate patient rights of access to legal medical services. This paper will respond to the misrepresentations. We highlight the growing threats to health care access from religious affiliated institutions, the threats to professional ethics and physician and nurse scope of practice. We conclude that the analysis by Fernandes & Ecret does point out an important lesson, but rather than showing the importance of individual conscience protections, it speaks to the importance of protecting patient rights.
Acting for the good of the patient is the most fundamental and universally acknowledged principle of medical ethics. However, given the complexity of modern medicine as well as the moral fragmentation of contemporary society, determining the good is far from simple. In his philosophy of medicine, Edmund Pellegrino develops a conception of the good that is derived from the internal morality of medicine via the physician-patient relationship. It is through this healing relationship that rights, duties, and privileges are defined for both physicians and patients. Moreover, this relationship determines the characteristics or virtues that are necessary to engage in the medical telos. This paper addresses the role of the moral virtues in clinical medicine and the physician-patient relationship. First, it provides a brief background of the Aristotelian foundations of virtue-ethics. Second, it delves into Pellegrino’s philosophy of medicine understood as a practice oriented towards a teleological goal. Third, it relates the telos of medicine to the notion of the medical community as a fundamentally moral community. Finally, it concludes with a section that creates a dialogue between virtue ethics and principlism.
Case Introduction: Makayla’s story
On January 19, 2015, Makayla Sault, an 11 year old Aboriginal girl, died of leukemia [1]. Although her physicians gave her a 75% cure rate with treatment, she and her family refused chemotherapy in favor of pursuing alternative therapies. Earlier in 2014, she completed 11 weeks of chemotherapy but decided to withdraw early. Makayla informed her doctors that, “I am writing this letter to tell you that this chemo is killing my body and I cannot take it anymore.”
Because untreated leukemia is a fatal diagnosis, the medical team tried to convince Makayla and her family to proceed with the treatment and an ethics consult was obtained to support communication. Discussions broke down however and Makayla left hospital. Her physicians pursued the matter further through the local Children’s Aid Society, who declined to apprehend Makayla and force her into treatment stating, "For us to take her away, to apprehend and place her in a home with strangers…when she's very, very ill — I can't see how that would be helpful" [1].
Many Canadians were angered by what they perceived as the justice system failing to intervene to save Makayla’s life. Did Makayla die simply because she was Aboriginal? Others supported the Sault’s decision to forgo Western medical paternalism, in favor of traditional Aboriginal medicine practices and a right to self-determination. Regardless of one’s position, Mikayla’s story resonates with the lived experience of many Aboriginal Canadians who suffer inferior health outcomes and face ongoing challenges reconciling their historical cultural narrative with that of the West.
Cultural Safety as Bioethical Framework
This paper will use a cultural safety framework as a bioethical tool to understand how Western medical institutions and practitioners contribute to broken trust for Aboriginal patients like Makayla. Cultural safety is a concept originating in New Zealand for the Maori people, and differs from other concepts like cultural humility, competency and awareness [2]. Cultural safety requires a thorough analysis of the social and historical contexts of health and health inequities. It does not focus on understanding “indigenous culture”, or specific belief systems. The cultural safety approach seeks to determine the roots of social injustice, and how imbalances in power, such as in the relationship between physician and patient, shape health care experiences. It demands that safety be evaluated and judged by those experiencing care, and not those providing it [3].
Through a cultural safety bioethical model, current and future strategies aimed at redressing health inequalities must first start with a self-reflective process on the part of the physician and health care organization. Following this, careful educational, research and policy interventions can be constructed, in concert with Aboriginal stakeholders. Although deep consideration of solutions is necessary at all levels of the health care continuum, this paper will focus primarily on the individual interactions that Aboriginal patients experience with health care providers and within health care institutions, and not specifically on governmental policy, judicial, and social reform.
Current inequities in social determinants of health and health care outcomes
Aboriginal Canadians continue to experience ill health and inferior life expectancy compared to the rest of Canadian society [4]. For example, the lifespan of an Inuit man in Nunavik is 15.8 years less than the lifespan of a man in Vancouver, British Columbia [5]. Aboriginal individuals are much more likely to die young from violence or trauma, and are more likely to suffer from preventable conditions like diabetes, heart disease and tuberculosis [6]. Addictions and mental health disorders are highly prevalent in Aboriginal communities [7]. In contrast, Canadians on the whole enjoy excellent health compared to the rest of the world and take pride in Canada’s universal health care system and strong social safety net, founded on the principles of equality and justice. So why do health inequities continue to exist for Aboriginals?
Disparities in basic social determinants of health, including lack of access to clean water, affordable and healthy food, and healthcare in the remote regions where Aboriginals often reside explain much of their poor health [8]. To illustrate, in July 2017 there were 92 advisories for unsafe drinking water in Aboriginal communities [9]. The Canadian senate described current health conditions among Aboriginal Canadians as a “national disgrace” [10]. Certainly, recent governmental efforts through the Truth and Reconciliation Committee (TRC) [11], aimed at closing socioeconomic disparities, as well as planned judicial reforms, will play a role in addressing wrongs, but this discussion is beyond the scope of this paper. Instead, let us look to the past through a cultural safety lens to better understand the historical struggles that have set the stage for Aboriginal Canadians’ mistrust of Western health care practitioners and institutions today.
Broken Trust: Colonial Legacy of Trauma
The most damaging tool of colonialism, perpetrated by white settlers on Canada’s original Aboriginal inhabitants, is often considered to be the residential school system. More than 150,000 Aboriginal children attended these church run schools between the years of 1870 and the 1990s when they were finally closed [12]. Taken by coercion or force from their homes, children were placed in these schools for the sole purpose of “aggressively civilizing” them, or to “kill the Indian in the child.” Severely underfunded and poorly staffed, these schools became synonymous with malnourishment and disease, with over 6000 children dying in care, and many more sent home to die. The TRC, which conducted a detailed six-year review, found that physical, emotional and sexual abuse was rampant at the schools [11]. Further, the education provided at residential schools was substandard and many children barely attained basic literacy, furthering cycles of unemployment and poverty. Because these children grew up outside of their traditional family structures, bands and nations, they lacked a basic understanding of community relations, parenting and household management.
Although these events reside in the past, it is crucial to understand that the legacy of trauma is in fact generational and continues to be vividly experienced by Aboriginals today when they engage with the health care system. Past suffering results in systemic harm to subsequent generations through a loss of language and culture, inferior educational attainment, and the disruption of family structures [13]. Children of attendees demonstrate worse health status than children of non-attendees. Further, families in which multiple generations attended residential schools have greater distress, substance abuse and suicide than those in which only one generation attended [14].
Unfortunately, most practicing physicians and nurses have no formal education about the disastrous impact of residential schools on Canadian Aboriginals. Medical schools do not include comprehensive teaching around traditional Aboriginal values or sensitive communication. This profound lack of understanding allows ongoing biases and racism to run unchecked. Rather than appreciating that present poor health conditions are influenced by social and historical events, many health care providers believe that Aboriginals are simply doomed to cycles of addiction, poor health, suicide and early mortality because of personal choice or racial inferiority [15].
Institutional racism in Western health care organizations engendered by these negative biases continues to perpetrate trauma upon Aboriginal patients. Many patients articulate feelings of fear, shame and judgement when admitted to hospital, to the point that they prefer to leave before treatment is complete, further worsening health outcomes [16]. Racist comments reported in the Canadian media include physicians writing prescriptions with crossed out beer bottles, instead of legitimate medication or care plans [17, 18]. I have personally witnessed an older Aboriginal woman admitted for severe medical issues being asked by a nurse, “So, did you fall down drunk?” Further, the institutional nature of hospitals, where physicians and nurses typically hold great emotional and physical power over ill and infirm patients, can mirror past events experienced at residential schools. As a result, survivors of residential schools may experience triggering of post-traumatic memories following hospital admission [19].
Taking a historical view when interpreting present day health injustices is critical to progress cultural safety. Unless health care providers understand the root causes of current health outcomes, their biases and racist beliefs will contribute to the cycle of trauma and injustice. The following bioethical analysis will clarify areas in which violations have occurred, while also striking a balance when advocating for solutions. Health care providers and institutions must serve the unmet needs of vulnerable Aboriginal patients, while also respecting their autonomy, diversity and resilience.
Bioethics Analysis: Acknowledging Vulnerability while Promoting Self-determination
From a cultural safety perspective, all four foundational bioethics principles — personal autonomy, beneficence, justice, and non-maleficence — were violated in the process of colonization. Autonomy was quashed, whereby those in power took an extremely paternalistic view of the Aboriginal peoples, believing that “civilizing” them into Euro-Canadian culture was in their best interests. Unfortunately this approach led to little or no benefits and many harms when we consider past and current health inequities. We continue to see infringement of autonomy and lack of respect for persons in the form of institutional racism in health care institutions today.
From a justice perspective, the discussion can be framed as an issue of human rights, because it speaks to the degree of abuse perpetrated and the urgency with which a response is needed. Clearly, the process of colonization, illustrated by the residential schools, deprived Aboriginal Canadians of basic human rights on a societal level. The right to life, thought, religion, free movement, as well as basic needs including clean water, adequate nutrition, safety, education and housing were all systemically denied. Unfortunately, many of these gaps persist today. In 2015, a United Nations report declared that Canada’s tolerance of violence towards its Aboriginal women and girls constituted a violation of human rights [9]. All Canadians, including health care providers and institutions, must recognize that human rights violations have occurred historically and continue to be perpetrated inside our own borders. Human rights are not just theoretical constructs from the past, or issues that concern persons and aid organizations in the third world. Work being done through the TRC aims to address these social injustices through policy, but this is beyond the scope of this paper.
On an individual level, Aboriginal patients are often described as vulnerable by health care providers. Vulnerability in health care can arise because of internal factors that affect ability to advocate for oneself, including physical illness, mental illness or substance abuse [20]. External factors include epistemic power hierarchies, where physicians and nurses hold the power to provide or deny treatment to patients. Acknowledging vulnerability is important because it calls attention to the need for special care and tailored resources to help Aboriginal patients navigate the care environment with safety and quality.
Alternative voices and perspectives
The bioethics concept of vulnerability is a nuanced one and must be handled with care. When we label a group as vulnerable, we risk being overly paternalistic and may excuse unjustifiable increases in social control [21]. Also, dwelling on vulnerability can perversely entrench the ideas it seeks to reverse, namely exclusion and stigmatization. Lastly, Aboriginal Canadians are an extremely diverse group, and labeling or generalizing does disservice to individuals who have met adversity with resilience, or do not feel defined by the dominant cultural historical narrative. In any agenda meant to reduce vulnerability, input from the central stakeholder — in this case, Aboriginal Canadians — is necessary to ensure that solutions focus on unmet needs rather than further cementing misconceptions of internal deficiencies.
Canadian society as a whole is moving towards a better understanding of the challenges faced by Aboriginals. However, racism and lack of education persists and is evidenced by attitudes that seek to deny Aboriginals any special consideration or tailored aid strategies. Some believe, as in discussions around the validity of international aid, that aid only prolongs dependency [22]. This perspective belies the fact that Aboriginals continue to face institutional racism and unfair social conditions. Under these circumstances, largely created and propagated by the majority in power, we have an absolute ethical obligation to redress wrongs through research, education and policy change.
Current and Future Directions: Health Care Providers and Institutions Embracing Cultural Safety
In many parts of the world with a colonial history, including Australia, New Zealand and Canada, health care institutions are beginning to take steps to improve cultural safety [23]. This starts with the creation of an education program, such as the San’yas Indigenous Cultural Safety training program in British Columbia, Canada [24]. These programs focus exclusively on the care of Aboriginal patients, rather than cultural minorities in general, and aim to equip practitioners with the knowledge and communication skills needed to provide a safer health care experiences for their Aboriginal patients. Cultural safety training can be unexpectedly painful for health practitioners because it prompts self-reflection into one’s own biases and challenges conscious or subconscious racism. Further, it forces the acknowledgement of one’s own elevated status and privilege, and how this power differential impacts the care of Aboriginal people [3].
Health care institutions have also developed specialized roles, including Aboriginal Patient Navigators (APN), to bridge the cultural trust gap between health providers and Aboriginal patients [25]. The involvement of these trained individuals, who are often Aboriginal themselves, has been shown to decrease stress and anxiety for Aboriginal patients in hospital, as well as improve their access to social supports. Many health care institutions have also created “safe spaces” for patients of all faiths to practice and hold gatherings. These spaces have enabled Aboriginal patients to hold traditional ceremonies, including smudging, allowing them to integrate aspects of traditional medicine while still receiving Western treatments [26].
What is lacking in much of the discussion about cultural safety locally and internationally is meaningful data collection and research around how effective the above interventions are [27, 28]. Key to the concept of cultural safety is that quality and safety are judged by Aboriginal patients, not by health care providers or institutions. The involvement of Aboriginal people in the creation and evaluation of any program is essential to ensure that programs truly fill unmet needs. Lastly, institutions have the potential to improve care for individual patients, but without a larger societal commitment to advance social justice for Canadian Aboriginals, beneficial change will be hampered.
Makayla: Resolution Within the Team?
We do not know the details of the interactions that led to a fracturing of trust between Makayla’s family and the medical team. However, specific recommendations could be made for future such conflicts aiming to improve mutual understanding and respect. Upon admission, the team could offer the services of an Aboriginal Patient Navigator. If no APN role exists, the institution should urgently consider creating one. The team could benefit from specific training in cultural safety, and perhaps this should become a mandatory expectation for any front line health provider. A safe space could also be offered to Makayla to facilitate integration of traditional medicine practices within the Western institution. Consideration could also be given to moving Makayla to her home community, allowing her to continue her treatment in relative comfort. Lastly, any such programs need to be evaluated by Aboriginal patients and their families to ensure unmet needs are being served.
Photo by Louis Paulin on Unsplash
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