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Media Landscape Opens Opportunity for Earlier, Better End of Life CareThe prevalence of end of life decisions in current media and literature provides an opening for physicians to prompt conversations about the subject with patients, said Anthony Back, a Seattle Cancer Care Alliance medical oncologist, in remarks to the Palliative Care Oncology Symposium in Boston. Before beginning such difficult dialogue, however, he offered frameworks to facilitate end of life conversations both early and later on in a patient’s disease trajectory. The Symposium was the first such hosted by the American Society of Clinical Oncology to promote discussion and integration of palliative care—a medical specialty designed to address physical, emotional and psychological symptoms of disease. The meeting drew an international audience of medical, radiation and surgical oncologists along with nurses, social workers and physician assistants. “This is a window of opportunity to get in the public dialogue in a really public way,” Back said during a session addressing the skills required for optimum end of life care. Back pointed to The New York Times’ widely-circulated coverage of Joseph Andrey and his daughter’s struggle to honor his wish to die at home. Back also outlined social efforts underway nationwide as a result of a project that began in his home of Seattle, Death over Dinner, along the success of physician Atul Gawande’s new book, Being Mortal. “This reflects the work done over the last 20 years that set the stage for this discussion,” Back said. “Being Mortal wouldn’t be on The New York Times’ best-seller list if not for the work you are doing.” He emphasized, however, that work remains to help physicians charged with navigating patients through the complex medical decisions they may face as they approach the end of their lives. “The task for physicians is the question of ‘how do we get to telling patients that we will give them an extra layer of support to talking about the really tough stuff?’” Back said. Communication, he warned, is a learned expertise that must include frank, explicit discussion about what may happen when curative treatment options are no longer available. “We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja,” Back said to laughter and applause. Physicians miss opportunities to educate patients about what may be ahead in one of three ways, he said: 1) in thinking “bad stuff won’t be quite so bad” if you don’t talk about it, 2) by delaying discussion about “bad stuff until you absolutely have to,” or 3) in thinking that “cutting to the chase” will save time and decrease patient distress. Those approaches are faulty, Back warned, and asked the audience to consider how they may move such conversations “upstream” in ways that will not “completely freak everyone out.” For end of life dialogues occurring early on in a patient’s illness—the optimal time for such conversation—Back offered the framework P.A.U.S.E: P.A.U.S.E. for early end of life dialogue • Pause: As “time” is often cited by physicians as a barrier to facilitating what can be a lengthy and complex discussion, they should stop to consider that this conversation may be more important than one about further treatment options. • Ask permission: Physicians should ask for permission to have this conversation and explain its importance. “Could we take a moment?” or “This will help me guide you,” are two conversation-starters that prove empowering to the patient. • Suggest a surrogate: Patients who do wish to engage in advance care planning are often thwarted by confusion about proxy selection. Physicians should ask simply, “Who is the person who knows you the best?” • Expect emotion: The many emotions that accompany such conversations often add to the time required to facilitate dialogue, further necessitating the need for physicians to “pause.” Doctors must empathize and realize the topic is a tough one for everyone in the room. For end of life discussions taking place later in a patient’s disease course, Back offered the framework R.E.M.A.P: R.E.M.A.P. for late end of life dialogue • Reframe: Physicians are obligated to communicate that the “status quo” is no longer working. However, they often face tough follow ups: “There’s another chemotherapy after this one, right?” “I only want to talk about positive things,” or “I want to be aggressive.” • Expect emotion: In response to these follow ups, there is even greater urgency to empathize with patients from the start. • Map: The conversation should turn to what a patient finds most important and to his or her goals. Physicians should explore patients’ interests, ask to see photographs and inquire about special family occasions or milestones. • Align: Physicians should ask about a patient’s values and the beliefs guiding any particular goal. • Plan: The final step for physicians taking part in late end of life dialogues is to match any particular treatment to a patient’s stated values. Back acknowledged that the execution of a “P.A.U.S.E.” or “R.E.M.A.P.” conversation is often met with resistance. “Patients often say ‘it doesn’t feel like time to give up,”” Back said. “Assure them that ‘I’m not giving up on you.’”
Examining Clinical EthicsThe Latin phrase primum non nocere, conceptualized in English as non-maleficence, is a fundamental principle of medical ethics, and one that clinicians in the United States swear to uphold through the Hippocratic Oath. In taking the oath, a clinician affirms, “I will use those dietary regimens which will benefit my patients according to my greatest ability and judgment, and I will do no harm or injustice to them” (emphasis added). While this ethical guideline may seem unambiguous in theory, in clinical practice the waters can become murky, thus pitting patient autonomy and clinician duties against one another. One such instance came to light in early October, when reports surfaced that a psychologist deliberatelyblinded a North Carolina woman named Jewel Shuping, per her request. Thirty-year-old Shuping suffers from Body Integrity Identity Disorder (“BIID”), a psychiatric condition in which individuals experience an overwhelming, lifelong desire to develop a disability—most often by amputating a limb but sometimes by maiming an organ. Even if they are completely healthy, classic BIID sufferers feel that their natural body state is incomplete and that only through amputation or maiming can they achieve their “true identity.” The blinding of Shuping warrants close inspection, since a clinician irreversibly altered a patient’s physiological experience by maiming an essential organ—creating a conflict between patient autonomy and clinical ethics. Despite being born with healthy, functional eyes, Shuping self-identified as blind since childhood. For her, the adage that looking into the sun will gravely damage one’s eyesight was not only appealing, but it also became her life’s mission. As a child, Shuping would spend hours watching sunspots and solar storms, with the intent of permanently losing her vision. In an interview released in October, Shuping recounts, “By the time I was six, I remember that thinking about being blind made me feel comfortable.” Indeed, Shuping began emulating the lifestyle practices of blind people as she matured—in her teenage years, she sported thick, black sunglasses and walked with a cane, and she was proficient in braille by age twenty. Determined to turn her dream into a permanent reality, Shuping found a psychologist in the Midwest willing to irreversibly damage her eyesight. In 2007, Shuping drove across the country to meet with this psychologist who, after observing Shuping emulate the life of a blind person for two weeks, agreed to insert numbing drops into each of her eyes, followed by drain cleaner—a poisonous chemical that, when placed in the eyes, leads to vision loss. Consequently, Shuping developed corneal complications, glaucoma, and cataracts. Six months later, the damage took full effect, and Shuping was completely blind at the age of twenty-one. Though Shuping initiated this process eight years ago, she began sharing her story only recently, in the hopes of (i) helping others with BIID seek clinical help and (ii) reducing the stigma associated with sufferers of this disease by increasing public awareness. In evaluating this situation from a rational, informed perspective, one might conclude that Shuping’s decision was unconscionable and could have been prevented—but the literature suggests that these desires are uncontrollable for, and overwhelming to, BIID sufferers. According to Dr. Michael First, the preeminent BIID expert and Professor of Clinical Psychiatry at Columbia University, people who suffer from BIID cannot control their need to be disabled. First asserts, “These people are aware that this feeling of theirs is unusual—they know it is coming from within them. They can’t explain it.” Though there is no cure for BIID, the psychologist’s actions are not ethical. Unequivocally, pouring drain cleaner into Shuping’s eyes was an unsafe, harmful, and unnecessary course of action. While it is true that Shuping is an autonomous agent with a right to make choices and request a specific treatment, this right is not absolute, and a clinician is not obligated to honor this right if it conflicts with fiduciary responsibilities. In this case, doing so guaranteedirreversible, unnecessary harm to the patient—Shuping herself reflected that she experienced excruciating, burning pain, which the psychologist who administered the treatment would have anticipated. By all measures, there was absolutely no assurance that doing so would guarantee Shuping’s long-term happiness, much less lead to an improvement in her mental or physical stability. According to First, “one of the big ethical issues here is that if somebody wants to be an amputee, is competent to make that decision, has this condition, and seeks out amputation, it is not unreasonable because there is a track record of people who have gotten success.” But, First cautions, for BIID sufferers who are seeking a more severe disability such as blindness, the ethics are questionable: “somebody who wants to be blind is going on faith” and “ethically, to sanction that is a huge problem because we have no idea whether the first person who tries to be [blind] will be horribly disappointed.” Without a track record of patients to confirm satisfaction, the potential of post-surgical regret or discontent currently outweighs the potential benefits of a surgery whose end result is a severe crippling of an essential organ. Indeed, First maintains, “being an amputee is a bad thing but it is not as bad as being a paraplegic or blind.” While establishing experimental protocols for carefully selected BIID patients who failed psychotherapy and medication trials would be advantageous to determine the effectiveness of voluntary amputation as a treatment for BIID, to date, no academic medical center has developed a research protocol for such elective surgeries. First indicated that the challenge to establish these elective surgeries is not on the psychiatric side—rather, it rests with the surgical community, which thus far has refused to oblige. For clinicians, First articulated four requirements that are necessary for the potential pursuit of an elective surgery: (i) the recognition that the clinician is not disabling somebody; rather, this is the treatment of a condition that has ruined and monopolized someone’s life; (ii) the sufferer must be desperate and have exhausted all reversible possibilities; (iii) the clinician must have evidence that the person is capable and competent to make this decision; and (iv) the presence of a track record where surgeries have been successful and patients have been satisfied with the outcome. First said, “The ethics of doing this for paraplegic or blindness is iffier because of this missing component—we do not know if the treatment would yield a successful outcome.” In a way, Shuping’s case is the first for the severity of this disability, but First questions whether there is enough evidence for this to justify a second case. To date, Shuping’s psychologist has not been publically identified. While it is not known if this individual is facing prosecution, his medical license has allegedly been suspended in several states. Notwithstanding physician-patient confidentiality, the fact that this clinician has not come forward, been subpoenaed, or otherwise called into question is alarming. While Shuping claims to be satisfied as a result of this process, the same cannot be said for many of those inspecting this troubling set of circumstances. One such investigator is Dr. Phil McGraw, whose interview of Shuping airs on November 5. Because BIID is an “underground” condition, there are no advocacy groups pursuing legislation due to the condition’s rareness and since “the idea of wanting to be disabled is inherently less acceptable to people.” Still, getting the word out may make a difference. First said, “the more it is publicized, the more likely it is for people who actually have BIID to feel more comfortable—the fact that it exists gives it a level of legitimacy to justify seeing this as an illness.” *A variation of this story first appeared on Bioethics.net, the website of the American Journal of Bioethics. References:  Graduates of nearly all American medical schools recite a version of the Hippocratic Oath or a similar pledge, thereby adhering to ethical principles and conduct in the practice of medicine.  National Institutes of Health: National Library of Medicine, History of Medicine Division. “Greek Medicine and the Hippocratic Oath.” Translated by Michael North. 2002. https://www.nlm.nih.gov/hmd/greek/greek_oath.html  See Michael First, “Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder,” Psychological Medicine 2005, 35: 919–928, Michael First and Carl Fisher, “Body Integrity Identity Disorder: The Persistent Desire to Acquire a Physical Disability,” Psychopathology 2012, 45: 3–14, and www.biid.org.  National Institutes of Health: National Library of Medicine, Medline Plus. “Drain Cleaner Poisoning.” September 2015. https://www.nlm.nih.gov/medlineplus/ency/article/002779.htm.  See Tom Midlane, “Psychologist Blinds Woman With Drain Cleaner Because She Wanted To be Disabled,” Mirror UK, October 1, 2015, http://www.mirror.co.uk/news/real-life-stories/psychologist-blinds-woman-drain-cleaner-6552282; Tribune Media Wire, “Woman Desperate to Be Blind Had Drain Cleaner Poured In Eyes, Now Happier Than Ever,” Fox 31 Denver, October 1, 2015, http://kdvr.com/2015/10/01/woman-desperate-to-be-blind-had-drain-clearner-poured-in-eyes-now-happier-than-ever/; and Kate Pickles, “Woman Who Dreamed About Being Blind Had Drain Cleaner Poured In Her Eyes…” Daily Mail Online, October 1, 2015, http://www.dailymail.co.uk/health/article-3256029/Woman-dreamed-blind-DRAIN-CLEANER-poured-eyes-fulfil-lifelong-wish-says-happier-ever.html.  Melkorka Licea, “I Poured Drain Cleaner in My Eyes to Blind Myself,” New York Post, October 1, 2015, http://nypost.com/2015/10/01/i-blinded-myself-on-purpose-and-have-never-been-happier/.  Unless otherwise noted, quotations and information stem from my October 2015 interview with Dr. Michael First of Columbia University.  Michael First and Carl Fisher, “Body Integrity Identity Disorder: The Persistent Desire to Acquire a Physical Disability,” Psychopathology 2012, 45: 3–14. amputation, autonomy, BIID, Body Integrity Identity Disorder, clinical ethics, Fall 2015, Jewel Shuping, maiming, Newswire
Critical Pedagogy in the New NormalPhoto by Thought Catalog on Unsplash INTRODUCTION The coronavirus pandemic is a challenge to educators, policy makers, and ordinary people. In facing the threat from COVID-19, school systems and global institutions need “to address the essential matter of each human being and how they are interacting with, and affected by, a much wider set of biological and technical conditions.” Educators must grapple with the societal issues that come with the intent of ensuring the safety of the public. To some, “these are actually as important as the biological concerns of people.” The current global crisis shows that “scientifically, socially, and politically the economy and technosphere are not just related, they are integral to a comprehensive response to major challenges.” In developing these responses, scientists, government leaders, and policy makers need to consider the vulnerabilities of people, especially those in “thrown away” groups. Jerome Ravetz explains that “microscopic viral predators cull our populations, as ever, but with a selection that is not natural but social and political.” Educators must address the underlying vulnerabilities and evaluate the virus as a threat to academic experiences and access to a fair education. ANALYSIS • Critical Pedagogy By definition, the critical approach to teaching is about the problem-posing method of education developed by Paolo Freire. In his Pedagogy of the Oppressed, he proposed a paradigm shift away from the banking method of learning wherein teachers deposit knowledge into the minds of students. Critical pedagogy is an educational approach that challenges students to develop the ability to recognize and criticize dominating theories and evaluate them in their social context. Teachers press students to recognize oppression and try to remedy oppression in their culture. Despite the lack of in-person interaction between the teacher and the students, the effort to use innovative teaching techniques like critical pedagogy should continue. Online learning is not just about the use of technology, although the internet is crucial in the delivery of content. Since human beings are creators of value, they determine the meaning and purpose of technology. In this way, the set of values people have will influence online learning. Teachers cannot be more concerned about outcomes than about the process itself. The process is crucial since the ability of the student to think critically is developed in the exchange between the student and the teacher. The teacher cannot simply dump loads of information (deposit knowledge) but must pose problems to test the analytical and critical skills of students. Education is about how people humanize the world. Policy makers miss the point when they focus on the delivery but do not pay attention to the substantive aspect of learning, which is human empowerment. Education is meant to expand the freedom of people. Education should be seen as an integrative activity. Learning is a formative process that aims to develop the human person. Without the face-to-face encounter between teacher and students, the challenge is finding ways to make learning an effective means to mold the values of young people. • Online Critical Pedagogy & the Role of Technology Physical distance appears to be an impediment in realizing the ideals of learning. The lack of contact between the teacher and the students may prevent a more meaningful interaction since online instruction is impersonal. It can be argued that there is no alternative to some classroom activities, especially laboratory experiments in science courses. The total classroom environment naturally influences the behavior of students when it comes to academic work: the look in the eyes of the professor, the caring ways of a teacher, or the pressure while taking exams contribute to an experience that only a classroom setting can provide. If implemented properly, technology can facilitate the personal relationships between teachers and students while providing meaningful experiences. With the current need for online learning during the COVID-19 pandemic, gadgets are indispensable. Some would even consider gadgets an extension of the human body. A mobile phone is not just any instrument; it has evolved into a novel way of being in the world. Our gadgets are a means of seeing how the outside world unfolds. Modern technological tools allow the interface of people in many fields of experience in a globalized environment. Computers and other digital devices extend the meaning and value of human freedom. For example, a laptop provided to a poor child can redefine the meaning of and what the future might hold for that child. The device is crucial to the whole learning process. Modern tools are critical to self-discovery and greater freedom. The values that people embrace will matter in the new normal. The internet has provided a new democratic space that empowers groups and individuals to express themselves and to understand the world. In an online class, students and teachers alike need to analyze big picture questions and layers of information. For example, the student in an ethics or philosophy class can reflect on the realities of life. With the proper guidance, online education should help define the meaning of moral commitment and human responsibility. CONCLUSION Before the pandemic, policy makers had been pursuing the goals of a globalized economy. They had been fashioning and promoting programs that cater to the interests of a consumer-driven world that has deprived the poor of opportunity. When the pandemic struck, globalization suddenly came to a halt and people realized the things that truly matter in life – family, love, and life itself. The new normal must now emphasize the role of education as a source of inner strength that can empower the person to live well reinforcing values based on a social consciousness. Critical pedagogy is possible under the new normal. The distance between the teacher and student does not make the educational process less real and in the absence of a vaccine, online learning is the safest strategy. Governments cannot freeze an entire school year since education is the only way out from poverty for millions. The COVID-19 pandemic provides a reason to re-imagine teaching using technology to encourage all students to question systems of oppression or greed, as the persistent pursuit of the truth is what education is all about.  Hartsell, Layne, Krabbe, Alexander, & Pastreich, Emmanuel. “Covid-19, Global Justice, and a New Biopolitics of the Anthropocene.” Social Ethics Society Journal of Applied Philosophy 6, no. 2 (2020), 3.  Ravetz, Jerome. “Science for a Proper Recovery: Post-Normal, not New Normal.” Issues in Science and Technology [Internet] July 15, 2020. https://issues.org/post-normal-science-for-pandemic-recovery/  Hartsell, et al. “Covid-19, Global Justice, and a New Biopolitics of the Anthropocene,” 6.  Ravetz, “Science for a Proper Recovery: Post-Normal, not New Normal.”  Ibid.  Freire, Paolo. Pedagogy of the Oppressed. (New York: Continuum Books, 1993).  Freire writes that in such a situation “instead of communicating, the teacher issues communiqués and makes deposits which the students patiently receive, memorize, and repeat.” See his Pedagogy of the Oppressed.  Bakardjieva, Maria. Internet Society. (London: Sage Publications, 2005).
Only Don’t KnowAlix Ankele began her professional career as a psychiatric social worker in New York City. But when she and her husband moved to Kenya, where he worked in media, her exposure to batik art shifted her life. “Art set my soul. It was a way of connecting through my heart”, recalls Ankele. Union Theological Seminary’s James Memorial Chapel will be the location of an exhibition of artist Alix Ankele’s monumental work on display from September 9-November 1, 2013. Although Ankele has been creating art for some time now, she began to make abstract art because it presented an intuitive process to painting rather than creating artwork from a structured conceptual mindset. Her pieces are mostly large in scale, abstractly structured, and vividly colored in expression. The title of her recent art exhibition, “Only Don’t Know”, refers to a Korean Zen master who promoted open-mindedness without a sense of coming to our own prejudged conclusions. This sense of being is most pertinent to Bioethics, which is based on a multidisciplinary approach that is based on seeing ethical realities as such rather than viewing them as we think they should be. Ankele’s work stresses the interconnectedness of who we are and our inseparableness to our universe. One striking piece entitled, “cross of the moment” speaks to the words of one of the 20th century’s most morally conscious poets, W.H. Auden: “We would rather be ruined than changed. We would rather die in our dread than climb the cross of the moment and let our illusions die.” Auden’s nuances reflect how terminal illness can affect a patient’s innermost thoughts that are never mentioned. In her work, “easter morning”, we are called to ponder upon and keep open to a sense of a new beginning or fresh start. But Ankele also challenges us to reflect upon collective and unconscious memory as observed in neuroscience and psychiatric medicine. Freedom and emancipation is transparently interpreted in Ankele’s 2013 piece, “todatsu”, reverberating one of bioethics most pertinent ethical principles-autonomy. After walking away from Alix Ankele’s multi-layered and highly global exhibition reflecting life, death, and new beginnings-all significant to human existence- I felt spontaneously uplifted, vividly transformed, and rightfully moved.
Implications of Policymaking and Court Decisions on Scientific InnovationRecent court hearings and legislation proposals regarding biotechnology and biotechnological methods have proven to be unfavorable to several avenues of scientific research and innovation. There exists a tension between interests of the scientific community and the means through which legislation permits scientists to realize those interests. Factors larger than those of the scientific community must be taken into account when penning policy, and the same holds true for any interpretation by judiciary bodies. The presence of a strain between advocacy for the scientific community and objectiveness in order to allocate the products of scientific innovation permeates legislative decision-making. In recent years, it appears as though advocacy for private scientific innovation has decreased as issues surrounding distributive justice have increased. There has been a tightening of the reigns by the United States Supreme Court regarding patent cases involving biotechnology over the past few years. With landmark cases such as Prometheus v. Mayo (2012) and AMP v. Myriad Genetics (2013) there appears to be a trend of judicial precedence that is unfavorable to scientific innovation. In Prometheus v. Mayo, the court ruled that a patent is ineligible if it is deemed to be applying the laws of nature using conventional methods known to the field. In AMP v. Myriad Genetics, the court ruled that isolated human DNA was not patent-eligible, without applying existing case law, relaying that DNA is both “unique” in its own right, and a “physical embodiment of laws of nature” and therefore cannot be patented. Both court decisions were deemed unfavorable by the scientific community. The current dispute over priority filing, scope of claim, and patent-eligibility of CRISPR/Cas9 technology will be a critical determination that will likely have adverse legal consequences for the relationship between patent application, litigation, and scientific innovation. The complexity of the bureaucratic process in which patents are granted (through the US Patent and Trademark Office) leaves much room for error. The factors driving the discrepancies in the patent granting process are no doubt multifaceted, but the influx of patent applications and the limited resources of the patent office create a perfect storm for the spike in patent litigation cases filed within the past decade. In addition, court rulings, such as the Myriad decision, have left many members of the scientific community confused. The verdict in Myriadmisunderstands what scientific innovation is and as a result creates a tremendous gray area in which scientists have to be mindful of the law, thereby ignoring the reality of scientific innovation. Patents assist scientific innovation due to their allowance of a government-granted monopoly for an extended period of time. However, considerations over the patentability of various prognostic and diagnostic methods may be considered an impediment to public health, precisely because of this monopoly. I assume that one (of many) purposes of policy is to allocate resources, in which case there is a delicate push and pull that occurs between private profits obtained from scientific innovation and public access to novel pharmaceuticals and biologics. While I do believe that the development of private enterprise is a critical component of driving scientific innovation, public access needs to be an equally important consideration. In preceding decades, the former has been granted greater weight, thereby detracting from the latter. These policy implications illustrate larger issues and trends in statutory law. One major piece of legislation that recently passed and has questionable implications for the scientific community is the Biologics Price Competition and Innovation Act of 2009 (“Biosimilars Act”). It passed with the intention of promoting innovation of biologics and lowering their price, thereby increasing accessibility to the wider population. The Biosimilars Act is highly analogous to the Hatch-Waxman Act of 1984, which skyrocketed the production of generic drugs and tremendously lowered the price of small molecule drugs. However, controversy exists over whether or not this is a realistic endeavor, given the scientific reality of the nature of biologics and the twelve-year exclusivity granted to innovator companies. The discrepancy between intention and outcome in the Biosimilars Act is speculative, but may be attributed to the lack of competition faced by biologic innovator companies. The discontinuity between policymaking, court interpretation, and their implications for scientific innovation that has emerged in recent years appears to be far from over. In fact, it is likely that such trends may lead to a battle between scientific innovation, legislation, and legal jurisdiction. The discontinuity also indicates that there is a delicate balance between the ability of self-regulation in the private sphere to promote scientific innovation and the oversight of government in its ability to properly allocate the products constructed from scientific progress. References:  Jost, Kenneth. “Patent Controversies.” CQ Researcher. CQ Press, 27 Feb. 2015. Accessed 10 Nov. 2015.  Morrison, Alan J. “Rethinking the Gene Patent.” Biotechnology Law Report 29.6 (2010): 609–14.  CRISPR/Cas9 is a molecular technology used for gene editing and gene regulation.  Barry, Chris, et al. “2015 Patent Litigation Study: A Change in Patentee Fortunes.” PricewaterhouseCoopers LLP, May 2015.  Lu, Ude. “Note: Biologics Price Competition and Innovation Act: Striking a Delicate Balance Between Innovation and Accessibility.” Minn J. L. Sci. & Tech. 15.1 (2014): 613–51.