tag:blogger.com,1999:blog-22639201881404642692024-03-13T05:52:16.753-07:00Practical BioethicsA blog of the
Center for Practical BioethicsPractical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.comBlogger720125tag:blogger.com,1999:blog-2263920188140464269.post-52315817556094648342021-08-23T12:08:00.001-07:002021-08-23T12:09:50.435-07:00Should Doctors Refuse to Treat Unvaccinated People?<p><b>ETHICISTS DEBATE</b></p><p><b>Should Doctors Refuse to Treat Unvaccinated People?</b></p><p><br /></p><p>A story appeared on August 17 in the Alabama News with the headline, <a href="https://www.al.com/news/2021/08/alabama-doctor-says-he-wont-treat-unvaccinated-people-covid-is-miserable-way-to-die.html" target="_blank">“Alabama doctor says he won’t treat unvaccinated people: “COVID is a miserable way to die.”</a><br /></p><p>Tarris Rosell, DMin, PhD, Rosemary Flanigan Chair, sent a link to the article to colleagues on staff at the <a href="https://practicalbioethics.org" target="_blank">Center for Practical Bioethics</a>, asking three questions:</p><p>• Punishment or persuasion?</p><p>• Patient abandonment or physician’s right?</p><p>• Commendable or unethical?</p><p>Erika Blacksher, PhD, John B. Francis Chair, responded to Dr. Rosell, which led to the following lightly edited dialog, which we believe presents important ethical considerations. Please note that their thoughts are framed by an understanding of the facts of the case as presented by the reporter.</p><p><br /></p><p><b>BLACKSHER: </b> Should doctors not treat obese patients on grounds that they will not control their weight? Should doctors not treat lung cancer in patients who have smoked all their lives on grounds they should have quit or never started? Should doctors not treat diabetic patients who do a lousy job of managing their diet? </p><p>I’ve always argued against personal responsibility for health arguments on a variety of moral grounds, including these. That not treating these patients: </p><p>(1) holds people responsible for conditions and situations not fully under their full control or whose health-consequential habits were set in early in life; </p><p>(2) would violate a physician’s duty to treat those who are ill and vulnerable, regardless of causation; and furthermore, </p><p>(3) that the origins of poor health and disease are manifold with behavior being only one among other causative factors. (The <a href="https://www.countyhealthrankings.org/explore-health-rankings/measures-data-sources/county-health-rankings-model" target="_blank">County Health Ranking Logic Model </a>attributes 30% of preventable morbidity and premature death to behavior, 40% to social/economic environment, 10% to physical environment, and 20% to clinical care.) </p><p>COVID cases are, however, different from these chronic disease cases in some ethically important ways, the most potent being:</p><p>(1) Causation is much more linear: no vaccine = vulnerability to sickness and potential death, and </p><p>(2) This is a highly transmissible infectious disease that imposes serious other-regarding harms (health and economic) to individuals, communities, and society as a whole given the need for herd immunity. </p><p>Still, some of the other concerns about personal responsibility remain relevant: </p><p>(1) Social circumstances may make it difficult for some people to get the vaccine. For example, people may have to juggle multiple jobs, childcare and eldercare or may be hundreds of miles from the nearest pharmacy or vaccination site, or may worry about the cost, even though COVID-19 vaccines are free to all.</p><p>(2) People may not understand the science of infectious disease and vaccines and so may be vulnerable to misinformation or disinformation or overestimate the chances of side effects. </p><p>But, Terry, I am very sympathetic to the fact that healthcare providers and anyone who is vaccinated are frustrated and angry and have good reasons to be.</p><p><br /></p><p><b>ROSELL: </b>Erika, I agree with you that, “COVID cases are, however, different from these chronic disease cases in some ethically important ways.”</p><p>Probably the Alabama primary care physician who is requiring COVID vaccination of patients who wish to remain his patients could agree with both of us about professional obligations versus personal (patient) responsibility in chronic care. </p><p>However, I think he could have a ready rejoinder to your proposed arguments for why those considerations apply to COVID vaccination as well. Dr. Valentine might respond:</p><p>• If one of my patients say they have had insufficient time or access for immunization, we can offer them an appointment to be immunized at our clinic, and without cost to the patient.</p><p>• If a patient expresses misunderstanding of the vaccine and/or COVID, we can offer medical information and advice. That’s what doctors do.</p><p>If Dr. Valentine’s patient chooses NOT to take the appointment and also refuses medical counsel, that sounds like a choice to be seen elsewhere or nowhere. Not so?<br /><br /></p><p><b>BLACKSHER:</b> I don’t disagree with you, Terry. That patient appears to be making a choice. Yet I am deeply ambivalent about triaging medical services on the basis of people’s choices rather than the patients’ needs even in the midst of this pandemic. The prospect of physicians refusing to care for patients whose ‘covid was their own dang fault’ is horrific to my mind. Where does such reasoning lead? What sorts of practice precedent does it set? </p><p>Decades ago, a personal responsibility advocate argued that, when calculating the global burden of disease, the calculation should not include diseases caused by smoking —as if people’s choices can be cordoned off from the societies, communities and families in which they grow up and live, the peer networks and information to which they are exposed, and the stressors they deal with day in and out. Such a suggestion oversimplifies disease causation and makes no room for social responsibility. I think there are constructive ways to encourage personal responsibility for health, but any such effort must create environments that support healthy choices. I want to find other ways to persuade more people to get vaccinated.</p><p><br /></p><p><b>ROSELL: </b>Erika, I too want “to find other ways to persuade more people to get vaccinated.” And we have done so. Creating lotteries. Financial and other incentives. Recruiting ministers to preach vaccination from their pulpits. Public Service Announcements depicting sports and music stars, politicians and other celebrities rolling up their sleeves. We’re using empathy instead of shaming. Persuasion over coercion. And some of it’s working. But not nearly enough or quickly enough. We’re in a global pandemic of nearly two years duration. Delta variant surges have our hospital-based physician colleagues shaking in their boots, if they’re not too exhausted to move at all. </p><p>This is a public health emergency. Emergencies warrant innovative means toward ends of human survival. It entails risk-taking. One family physician in Alabama took the risk of innovative action. At least he has gotten our attention. That is some sort of success in the midst of public chaos.</p><p>You also wrote: “The prospect of physicians refusing to care for patients whose ‘covid was their own dang fault’ is horrific to my mind.”</p><p>And to mine. Yes. </p><p>But is that what Dr. Valentine is reportedly doing? What I read is that he aims to communicate with all of his patients that he recommends vaccination, and that if they choose otherwise, he can no longer be their doctor—for reasons given. Ought he send that letter? Does this constitute patient abandonment? Those are questions to discuss. </p><p>I have not heard of anyone who is refusing or threatening to refuse care to actual current COVID patients on grounds that it was their own fault. Some (all?) providers surely feel frustrated by needing to care for COVID patients with a mostly preventable illness. So do I. Indeed, it seems obvious that we each do bear some responsibility for our own COVID illness if that is a result of having chosen to not get vaccinated. Even so, if that patient shows up at the ER or Urgent Care, they will be treated like everyone else, on grounds of EMTALA (Emergency Medical Treatment and Labor Act) if nothing else. </p><p>Now, if a patient who used to see the Alabama doc for primary care still chooses not to get vaccinated after receiving the physician’s letter, then gets COVID and wants a non-urgent appointment, it appears they’ll need to look elsewhere. Probably Urgent Care or ER. At this point, I’m not convinced they are harmed by their former primary care provider thereby. Rather, this does seem to me to be a matter of the patient’s personal responsibility. We all make choices and live with the consequences—in this case, that of needing to find another primary care physician. </p><p>Pediatricians have debated this issue for years. Some have sent those letters to parents who refuse to do childhood immunizations. “Vaccinate or find your child another pediatrician.” The rationale typically is that unvaccinated children pose a risk to other patients and especially to immuno-compromised persons in the clinic environment. This situation seems more ethically complex to me given that it involves pediatric patients without personal responsibility whatsoever. </p><p>But adult patients refusing COVID vaccine? I am unable to make a cogent argument, thus far, that would fault Dr. Valentine for his stated stance. It might be that more primary care docs need to follow suit so as to incentivize vaccine-reluctant/refusing patients to do the right thing for themselves, their loved ones and the rest of us. Otherwise, a lot more people may suffer and die needless COVID deaths for years to come, including the wholly innocent, especially children. That is ethically weighty. </p><p>I think this is an important discussion.</p><p><br /></p><p></p><p><br /></p>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-38735516876462647712021-03-09T11:26:00.002-08:002021-03-09T11:26:19.387-08:00Eight Principles and Practices for Ethical Vaccine Distribution: A Proposal<p>The COVID-19, once-in-a-century, pandemic has now exceeded a year in duration. Nerves are frayed and relationships are strained. This is evident within families, communities, healthcare systems, and institutions of government. Hope, in the form of declining cases and hospitalizations and a vaccine, is on the horizon and yet we are literally at our wits end. Now more than ever, we need to think carefully and not just emote. We need more dialogue and less monologue, civil discourse instead of incivility posted to social media. We need to take the time to deliberate and exhibit virtue rather than vice, to replace narcissism with altruism. This is particularly true now in regard to vaccine allocation, hesitation, and resistance.</p><p>As a public health physician-leader and a bioethicist, we, like everyone else, are also citizens, impatient with pandemic restrictions and the scarcity of COVID vaccine. Having put aside our own frayed nerves and emotions so as to think and to dialogue, we have come to agreement on a set of principles and practices for ethical vaccine distribution that we hope might be helpful even beyond this pandemic. All of us bear responsibility; and we call upon our leaders especially—in state government, county or municipal health departments, and all healthcare institutions—to demonstrate fidelity to the following commitments:</p><p><br /></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p>1. Allocate and distribute vaccine in keeping with agreed upon protocols and without ethically unjustifiable deviation. Seek community member input to establish local protocols and factor the social determinants of health into risk stratification. If examples are needed, it is hard to imagine ethical justification for offering scarce vaccine to one’s institutional benefactors, boards of directors, or most others who fall outside of the agreed upon protocols.</p><p>2. If there seems justifiable reason to engage in practices of vaccination that fall outside of agreed upon protocols, first engage in dialogue with colleagues who have fully acknowledged their conflicts of interest so as to check one’s assumptions and build collegial trust rather than erode it.</p><p>3. Vaccinate the greatest number possible in the shortest time possible—and not without regard to other fundamental ethics commitments related to equity and justice.</p><p>4. Exercise transparency through frequent and voluntary release of all vaccination data for public analysis. Engage with local community representatives and stakeholders in a discussion of these data and in an effort to adjust protocols as necessary in response to this data and in an effort to further promote equity.</p><p>5. Reassess vaccine allotments to county/municipal health departments in comparison with those allotted to healthcare institutions, local pharmacies, and others. Build communication channels now so as to ensure equity of vaccine access to those most vulnerable to this coronavirus.</p><p>6. Seek new and improved means for getting vaccine to vulnerable persons who lack equitable access for appointment sign-ups, transportation to vaccination sites, or even news of availability. Talk to community members and test innovations until every possible individual, even those initially hesitant or resistant to vaccination has been repeatedly offered the vaccine at no cost and at a convenient time and location.</p><p>7. Assess practices pertaining to distribution of vaccine “leftovers”. Strategize means of avoiding waste while maximizing opportunity of access to those who most need the life-saving protection that vaccines promise.</p><p>8. Address vaccine hesitancy among individuals and groups with respect, acknowledging that some distrust of vaccine may be justified and is grounded in misinformation or disinformation, while much hearkens back understandably to historic racism and systemic injustice. Repeatedly dialogue with those who are hesitant over time, so that they have multiple opportunities to reconsider and until the pandemic is completely over and can no longer impact the most vulnerable, even in small numbers. Consider intense involvement of trusted health care professionals and primary care providers in this effort.</p></blockquote><p><br /></p><p>We acknowledge that the healthcare leaders, institutions and organizations of our country are well intended, perhaps more so than many of us who are simply impatient and too often self-absorbed. Healthcare facilities and professionals have been battered and pummeled over the last twelve months. Despite intense pandemic stress they have done their best in the hardest of times with insufficient resources; and now they face a massive shortfall of vaccine. Logistics are challenging, to say the least. Form the beginning, our healthcare system has done much with far too little, from PPE to staffing. And yet our society can and must do this better, with more collegiality, communication, empathy and professionalism. Each of us as citizens are responsible for promoting justice as well. We are making a commitment to vaccine equity, to personal altruism and community solidarity. We call upon our friends, neighbors, colleagues, and acquaintances in many places to do likewise.<br /><br /></p><p><br /><i>By K. Allen Greiner, MD, and Tarris Rosell, PhD, DMin</i></p><p><i><b>About the Authors:</b></i></p><p><i>K. Allen Greiner, MD, MPH is Chief Medical Officer with the Unified Government Public Health Department, Kansas City, Kansas.</i></p><p><i>Tarris Rosell, PhD, DMin holds the Rosemary Flanigan Chair at the Center for Practical Bioethics, Kansas City, Missouri.</i></p><div><br /></div><p></p>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-70795231869246655232020-12-09T08:21:00.001-08:002020-12-09T08:23:31.373-08:00The Truth of COVID-19: An Ethicist Reflects on His Experience<div style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; text-align: left;">I have been honored and privileged to serve the Kansas City region through my work at the Center for Practical Bioethics during this challenging year of COVID-19. My role has grown during this pandemic, as I share in the work of providing ethics services in several hospital systems in the region. This has involved front-end work, including structure and policy development, as well as groundwork such as conducting clinical ethics consults and supporting medical staff with ethics education and guidance. I am grateful to help our hospitals and health systems prepare for, manage and move forward in facing the ethical challenges of the pandemic.<span class="Apple-converted-space"> <br /></span><span class="Apple-converted-space"><br /></span>But this role comes with an additional emotional burden. While I share in these organizations’ successes as they build and grow ethics services, I also share in their hardships and challenges as we work to address highly unusual and sometimes unprecedented ethical issues. This access and knowledge have led me to a foundational truth about the COVID-19 pandemic: People are our greatest resource, and they are not an unlimited one.<span class="Apple-converted-space"> <br /><br /></span>Every one of the healthcare workers I’ve encountered is exceptional, and exceptional people step up and grow during the most challenging times. That is exactly what I have seen this year. As a society, we place high expectations on healthcare workers. We take advantage of their skills and rely on their dedication. When patients arrive at the ER, we expect fast response and quality service. When patients receive a cancer diagnosis, we expect the marvels of medicine and intimacies of compassion. When a family member is in the ICU, we expect the best care possible. These expectations exist because that is what healthcare workers deliver, day after day after day. And when a global pandemic uproots our lives and threatens the health and safety of everyone, new expectations are placed upon healthcare workers. And again, they rise to the challenge.<span class="Apple-converted-space"> </span></div><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><h3 style="text-align: left;"><span style="font-size: small;">A Finite Resource</span></h3><p style="text-align: left;">But this resource is not infinite. Why?<span class="Apple-converted-space"> </span></p><p></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: Symbol; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">• </span><b>Hospitalizations Rising </b>–<span class="Apple-converted-space"> </span>Not every hospital is at maximum capacity or needs to implement crisis standards of care. But after months of challenges and difficulties for our healthcare workers, we are entering a new time with more expectations. In the beginning of the pandemic, we faced the crisis related to shortages of PPE (personal protective equipment). Now we must face the possibility of a shortage of those who wear the PPE. As hospitals reach new levels of capacity and with new COVID-19 units being established, staffing is stretched to extremes. There are potentially not enough qualified clinical staff to care for the levels of patients in need of care. This is only expected to worsen as infections spread.</p><p class="p2" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 13px;"><br /></p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: Symbol; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">• </span><b>Moral Distress </b>– Distress from being required to do things that conflict with one’s conscience, professional duty and moral principles is particularly stressful now for front-line healthcare workers. These are individuals who are making the decision to go to work, day-in and day-out during this crisis, risking their health and safety and the health and safety of their families because they believe in the importance of their work. Selflessness does not begin to describe that level of commitment to their fellow companions. They see first-hand the burdens, the true pain and suffering, that the pandemic brings.<span class="Apple-converted-space"> <br /><br /></span></p></blockquote><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-converted-space"><br /></span></p><h3 style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; text-align: left;"><span style="font-size: small;">The Empty Glass</span></h3><h3 style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; text-align: left;"><span style="font-size: small; font-weight: normal;"><br />I have worked intimately with many of these front-line healthcare workers and have heard their stories. Stories that bring the truth of COVID-19 to anyone willing to listen.<span class="Apple-converted-space"> </span></span></h3><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-converted-space"><br /></span></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: Symbol; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">• </span>I have heard from the physician who stayed on for an additional shift to honor his promise to a dying patient whose family was unable to visit that he would not die alone.<span class="Apple-converted-space"> </span></p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: Symbol; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">• </span>I have heard from a nurse who was unable to see immediate family because of fear of bringing the virus back home.</p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: Symbol; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">• </span>I have heard from a physician who watched four patients suffer and die from COVID-19, only to return to the clinic and be told by another patient that it was all political and that the virus would be gone after election day.<span class="Apple-converted-space"> </span></p></blockquote><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br />Healthcare workers pour themselves into their work and their patients, like water from a glass. Without help, support and consideration, the glass eventually empties, and they have nothing more to give. This is what comes with the job and is a load shared by all. It is a why healthcare workers earn the respect we give them.<span class="Apple-converted-space"> </span></p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><h3 style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; text-align: left;"><span style="font-size: small;">United We Stand</span></h3><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br />Supporting our healthcare workers must be a united fight, or it is destined to fail. When faced with nearly impossible odds, Sir Winston Churchill said he had “nothing to offer but blood, toil, tears, and sweat.” His nation stepped forward to fight the threat to life and safety; from the solider to the factory worker to the caregivers at home and leaders at the top, they all gave everything together and overcame the grave threat.<span class="Apple-converted-space"> </span></p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br />I have seen our great healthcare workers give all this and more to fight this fight against COVID-19, but I see some in leadership outside of the hospital step away, deny or ignore the threat and the fight. This is destructive to so much that we hold dear. This is a fight that will possibly worsen before it improves. We see the impact it has right now and fear what the future might hold.</p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br />I have had the privilege to work and share with those fighting and giving everything.<span class="Apple-converted-space"> </span></p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br />We must not let them fight alone.</p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br />Ryan Pferdehirt, D. Bioethics, HEC-C</p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Clinical Ethicist</p><p class="p1" style="font-family: Calibri; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><a href="https://practicalbioethics.org/">Director of Membership and Ethics Education</a></p>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-62151432786371152152020-09-16T14:11:00.004-07:002020-09-16T14:11:28.913-07:00MEDICAL BANKRUPTCY, PERSONAL LUCK AND A NATIONAL SIN<p><span style="font-size: x-small;"><i>By Tarris Rosell, PhD, DMin<br />Rosemary Flanigan Chair at the Center for Practical Bioethics<br />Professor of Pastoral Theology—Ethics & Ministry Praxis, Central Baptist Theological Seminary<br />Clinical Professor, School of Medicine, University of Kansas Medical Center<br />Director, Hospital Ethics Consultation Service, The University of Kansas Health System</i></span></p><p>I was raised on a farm up in Minnesota by Fundamentalist Depression-era parents. Among the many rules taught by words and deeds was that you don’t buy what you can’t afford. And never accrue debt. Save enough to buy a car when it’s needed, and then only buy the car that costs the amount you have saved.</p><p>That policy worked well for my nuclear family because of white privilege and a whole lot of luck. Others in our family had not always been so lucky, however. My grandparents, on both sides, had bad luck during the 1930s. They had accrued debt that they couldn’t pay when times got hard. Family farms were lost. Everything gone to debt collectors, some of whom were luckier neighbors. So “Never buy what you can’t afford” became our mantra. Not cars or even farms. Never acrrue debt. </p><p>What works for some and in regard to cars or farms doesn’t work as well when what one cannot afford is healthcare. I can live with a cheap set of wheels, or maybe none at all. But my Depression-era father could not live without expensive cancer and cardiology care when he needed it. And there were no cheaper options. In healthcare emergencies, there is no Ford instead of a Lexus. It’s all Lexus. Or Lamborghini. Thank God my Dad had Medicare. Thank God I have employer provided insurance. </p><p>But not everyone is so lucky. That is the truth we all know and of which we’re reminded by a recent (September 1, 2020) West Health and Gallup report on bankruptcy due to medical costs. What researchers learned is summarized in the title: “50% in U.S. Fear Bankruptcy Due to Major Heath Event.” https://news.gallup.com/poll/317948/fear-bankruptcy-due-major-health-event.aspx </p><p>While half of all adults reported that they are either “concerned” or “extremely concerned” that medical bills will bankrupt them, 64% of non-white adults are in that category, an increase from 52% reported in 2019.</p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-lzuNncJFeKk/X2J-zvigYiI/AAAAAAAACA4/tqCk0cP6lLInUE5J2hgY5WAxiWkhDnnFACLcBGAsYHQ/s648/Picture1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="648" data-original-width="361" height="766" src="https://1.bp.blogspot.com/-lzuNncJFeKk/X2J-zvigYiI/AAAAAAAACA4/tqCk0cP6lLInUE5J2hgY5WAxiWkhDnnFACLcBGAsYHQ/w426-h766/Picture1.png" width="426" /></a></div><br /> <p></p><p><br /></p><p>There are no real surprises here. Why wouldn’t at least half of U.S. adults be concerned or extremely concerned about the specter of financial disaster if they get sick? On an inventory list of healthcare products and procedures for sale, there is virtually nothing the average person could afford to buy out of pocket. Yet when healthcare is really needed, we either buy or die. Or perhaps we don’t die but suffer instead, including the financial stress of accrued debt. For lack of good alternatives, many have bought what they couldn’t afford.</p><p>Of what am I reminded when reading this Gallup report? That Depression-era wisdom applicable to car-buying doesn’t work when it comes to healthcare—or only if one is very lucky. Surely in this nation we can and should depend on something other than luck. Shouldn’t we?</p><p>Actually, my people never used the word “luck”. We talked in terms of being “blessed”. We were blessed even if others were not when medical and then financial disasters struck. </p><p>Really? I have come through my own faith journey to see things differently. Being blessed or not implies the intervention of a higher being, the actions of God. While remaining devout in my faith tradition, what I no longer believe is that God is the agent of inequity. When it comes to healthcare disparities and consequent financial disasters, I have stopped blaming God, even by implication. This mess is our fault. As a people, we have failed each other. It is a failing that many who believe as I do recognize as sin, both personally and socially. And individuals like my father and I who have thus far escaped the consequences of our national sin are indeed lucky while others are not. </p><p>But even for those most fortunate and privileged, luck has a way of running out. If only as a matter of self-interest when it comes to healthcare costs, or possibly out of compassion as well, we all ought to be “concerned” or “extremely concerned.” Shouldn’t we?</p><p><i>[Portions of this essay were previously published Sept 14, 2020 in an article at GoodFaithMedia.org by Zach Dawes. <a href="https://goodfaithmedia.org/reaction-and-response-medical-bankruptcy-concerns-half-of-us/">https://goodfaithmedia.org/reaction-and-response-medical-bankruptcy-concerns-half-of-us/</a>.]</i></p><div><br /></div>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-643149142687695742020-06-29T14:42:00.002-07:002020-06-29T14:42:46.523-07:00SUPPORT MISSOURI MEDICAID EXPANSION<h3>
Register by July 8 to Cast Your Vote on August 4 Ballot</h3>
On Tuesday, August 4th, voters in Missouri will have the opportunity to vote on a ballot measure called Amendment 2, which amends the Missouri Constitution to “adopt Medicaid Expansion for persons 19 to 64 years old with an income level at or below 133% of the federal poverty level.” Your vote is critical.<br />
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The referendum prohibits making eligibility requirements more strict for the expanded group than what the more limited group faces. It requires state agencies to maximize funding received from the federal government for expanding Medicaid in Missouri, making millions of dollars available for health coverage to Missouri’s poor.<br />
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Medicaid is a critical part of our healthcare system, providing coverage for people with limited incomes. But in states like Missouri that have not yet expanded Medicaid, many people fall into what is called the “coverage gap” - a no-pay zone where poor and mostly working Missourians live without the benefit of health insurance and cannot receive subsidy or help with their premiums as their peers in 36 states across the nation do.<br />
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Medicaid expansion would allow those poor Missourians to get basic coverage they need to take care of themselves and face health crises of any kind head on – even things like COVID-19! Employer-based health coverage is being cut drastically due to COVID and people need help, NOW! Nearly one-quarter million Missourians would receive help through expansion - and that’s a figure before COVID-19 happened resulting in thousands more laid off workers who now have no income for health coverage.<br />
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The expansion of Medicaid in Missouri is funded by tax dollars that Missourians pay and receive no benefit. In effect, the expansion “brings our tax dollars home,” putting that money back into local communities, creating jobs and supporting hospitals from inner city urban areas to small rural communities - the very settings that are struggling to keep their doors open.<br />
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We need every voter in Missouri to register to vote by July 8 in order to cast a ballot on August 4 for Medicaid expansion in Missouri. Do you part and take action, spread the word.<br />
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For more information about keeping our communities healthy through the Missouri Medicaid expansion and how you can support this initiative, go to <a href="http://yeson2.org/" target="_blank">yeson2.org </a>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-6065734278687690492020-06-24T10:42:00.003-07:002020-06-24T10:43:53.463-07:00National Healthcare Decisions Day 2.0<div class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0in 0in 8pt;">
In the future, those of us who survive 2020 will use words like “scary,” and “uncontrollable” in describing this pandemic year. But right now, you can control one very important aspect of your life – the end of your life. I’m not being flippant. It’s true.<o:p></o:p></div>
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Due to the pandemic, <a href="https://nationaldaycalendar.com/national-healthcare-decisions-day-april-16/#:~:text=NATIONAL%20HEALTHCARE%20DECISIONS%20DAY%20%2D%20April%2016%20%2D%20National%20Day%20Calendar" style="color: #954f72;">National Healthcare Decisions Day (NHDD)</a><span class="MsoHyperlink" style="color: #0563c1; text-decoration-line: underline;">,</span> which is always the day after Tax Day, is doing a reboot or a second round – a 2.0. Since Tax Day was moved to July 15, NHDD is moving to <b>July 16.</b> NHDD has always used the “death and taxes” slogan to remind people to complete or review their advance care directive.<o:p></o:p></div>
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On the <a href="https://www.practicalbioethics.org/events-education/events-calendar.html" style="color: #954f72;">Center for Practical Bioethics website</a>, we’ve made it easy to host an NHDD health fair-type event at your hospital or organization with your choice of two marketing kits.<o:p></o:p></div>
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If you’re an individual who hasn’t completed your advance care directive, we offer a <a href="https://www.practicalbioethics.org/resources/caring-conversations" style="color: #954f72;">free download</a> from our website of our workbook in English or Spanish. <o:p></o:p></div>
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Whether you are an organization or an individual, you can call us anytime if you have questions or need guidance on advance care directives.<o:p></o:p></div>
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So 2020 is scary and much of what’s happening may be uncontrollable, but hosting an NHDD event or filling out your directive can be an easier accomplishment in 2020 with the Center’s resources.<o:p></o:p></div>
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<span style="font-size: xx-small;">Written by Monica Delles</span></div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-78282158245822875222020-06-17T15:06:00.000-07:002020-06-17T15:06:19.669-07:00Ethics Consultation in COVID Times<div class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<b>Q: What happens to clinical ethics consultation in a pandemic?<o:p></o:p></b></div>
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<b>A: Ethics consultation continues, only more so.<o:p></o:p></b></div>
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During the first few months of the coronavirus pandemic, with a significantly lower overall inpatient census and fewer providers seeing outpatients, ethics consultation at the University of Kansas Health System (UKHS) increased rather than decreased. Not all of the increase is COVID related. Most consultations reflect issues that arise during normal times as well.<o:p></o:p></div>
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<b>Typical Issues, New Perspectives<o:p></o:p></b></div>
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Some consultation has been COVID specific, including participation on the UKHS Pandemic Triage Team assisting in preparation of guidelines for allocation of scarce resources under <b>crisis standards of care</b>. If hospital admissions exceed our critical care capacity, who gets an ICU bed? If there is just one ventilator available and two patients need ventilation support, who gets it and who is allowed to die? Or the shortage may be of personnel, or dialysis, or medications. Who decides and how? These are matters of ethics.<o:p></o:p></div>
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<i><span style="color: #999999;">Ethics consultation services, both at UKHS and the Center for Practical Bioethics, are always available. Always.</span><o:p></o:p></i></div>
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Early in this pandemic situation, we responded to queries about a provider’s <b>duty to care</b> and ethically appropriate exceptions to the rule. Other consultation addressed the need to encourage <b>advance care planning</b> further upstream of arrival at the Emergency Department by patients in COVID-19 crisis. Decisions then may need to be made emergently about <b>resuscitation</b> attempts on a patient who may not have wanted it, or for whom CPR will almost certainly be futile—and riskier also for those who provide it. Heightened risk to providers sometimes spawns awareness of ethics issues. This was discussed at great length most everywhere relative to shortages and conservation of <b>personal protective equipment</b> (PPE).<o:p></o:p></div>
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The UKHS Ethics Consult Service responded recently to several situations of ethics dilemma regarding decisions for <b>patients who also are prisoners</b>. Who decides for a ward of the state? Can the patient’s mother be contacted directly, or only by permission of the warden? Ought we allow prison guards in the COVID “hot zone”? Not all such cases arise as a direct result of a pandemic, but there seemed more of them recently, perhaps with correlation to the inordinately high incidence of coronavirus transmission within incarcerated populations.<o:p></o:p></div>
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<b>Same Process, New Technology<o:p></o:p></b></div>
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Consult requests can come at all times, pandemic or not, and at all hours of the day and night. Health system ethics consultants typically are happy to respond with ethics assistance at 3 or 4 A.M. even on a holiday weekend, as happens occasionally for this consultant. I might heat up a cup of coffee before picking up the phone to return a call after the Ethics pager has gone off in the wee hours, but it is a privilege to collaborate with resident physicians and night shift nurses on ethical care to patients—whenever need arises.<o:p></o:p></div>
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The UKHS <a href="https://practicalbioethics.org/" target="_blank">ethics consult service</a> has been carried out during COVID times both virtually and with physical presence in clinical settings. For the most part, we are doing “tele-ethics.” Like tele-health generally, we too make optimal use of confidential email, phone calls, Zoom meetings, and ethics notes posted to the electronic medical record. Some of our consultation team members are considered “essential” healthcare workers in their primary roles of physician, nurse, social worker, or administrator. That has enabled us to offer physical presence at the bedside or on the unit when face-to-face communications are necessary or at least better than virtual only.<o:p></o:p></div>
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Ethics consultation continues during COVID times as it did before this global strangeness began. Pandemic conditions may have put the pause on elective services for a time, but Ethics is never elective. Ethics consultation services, both at UKHS and the Center for Practical Bioethics, are always available. Always.<o:p></o:p></div>
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<b><i>By Tarris Rosell, PhD, DMin<o:p></o:p></i></b></div>
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<i><span style="font-size: 11pt;">Dr. Rosell is the Rosemary Flanigan Chair at the <a href="https://practicalbioethics.org/" target="_blank">Center for Practical Bioethics </a>and Director of the University of Kansas Health System Ethics Consultation Service and Co-Chair of its Hospital Ethics Committee. He is also the Center for Practical Bioethics’ 2020 Vision to Action Award honoree.<o:p></o:p></span></i></div>
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Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-64288298276900139532020-03-16T12:48:00.000-07:002020-03-16T12:48:14.244-07:00ADVANCE CARE PLANNING<h3 style="font-family: Calibri, sans-serif; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<b style="font-size: 12pt;">Deciding How You Want to Live in the Time of COVID19</b></h3>
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People don’t like to talk about politics, religion or money. To that we would add advance care planning. And to that we would add there’s been no time in recent memory when it was more important to name someone to speak for you if you can’t speak for yourself…which is what happens when you’re on a ventilator!<o:p></o:p></div>
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Advance care planning is the process of clarifying your life goals and values and making sure your healthcare preferences are known and honored.<o:p></o:p></div>
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Most Americans today will die from complications of chronic illness, with slow and uncertain disease paths, affected by dementia, and 85% will die without capacity to make decisions.<o:p></o:p></div>
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So why are two-thirds of Americans still leaving it up to their doctors and ill-prepared family members to make decisions about care and life-prolonging treatments? Maybe you’re familiar with some of these mistaken beliefs that lead people to avoid advance care planning:<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span>I’ll always be able to make my own decisions.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span>My family already knows my wishes.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span>My doctor will know what’s right.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span>I’ve written it down so I don’t need to talk about it.<o:p></o:p></div>
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<b>Solutions Offered<o:p></o:p></b></div>
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The Center pioneered advance care planning in the 1980s and continues trailblazing work to make the patient voice heard.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><b>Counseling</b> – Responding to calls for guidance in a personal or family healthcare crisis. Call us at 816-221-1100 if you need help.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><a href="https://practicalbioethics.org/resources/caring-conversations.html" style="color: #954f72;"><b>Resources</b></a><b> </b>– Providing Caring Conversations<span style="font-family: Symbol;">Ò</span> workbooks in English and Spanish.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><a href="https://practicalbioethics.org/programs/workplace-programs-care.html" style="color: #954f72;"><b>Employee Benefits</b></a> – Offering advance care planning education and support through corporate employee benefit programs.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><b>Cultural Competence</b> – Developing curricula and holding workshops to encourage advance care planning in African American faith communities.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><a href="https://practicalbioethics.org/programs/transportable-physician-orders-for-patient-preferences.html" style="color: #954f72;"><b>Seriously Ill Patients</b></a> – Training Missouri and Kansas providers to document seriously ill patients’ goals of care as physician orders.<o:p></o:p></div>
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<span style="font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><a href="https://mydirectives.com/?utm_source=bioethics&utm_medium=pn&utm_campaign=bioethics" style="color: #954f72;"><b>MyDirectives.com</b></a> – Enabling family and providers to easily access advance care planning documents and video testimonies online.<o:p></o:p></div>
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<b>Three Lessons Learned<o:p></o:p></b></div>
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1.<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span><b>Advance care planning is for everyone</b>. A medical crisis could leave you too ill to make your own healthcare decisions at any age.<o:p></o:p></div>
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2.<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span><b>Start with the conversation</b>. Share your wishes with someone you trust to speak for you if you can’t speak for yourself.<o:p></o:p></div>
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3.<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span><b>This is not a one-and-done process</b>. Wishes change through various life stages. Revisit your plan.<o:p></o:p></div>
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Things happen. People have accidents. Get chronic illnesses. Receive life-threatening diagnoses. And, now, pandemics.<o:p></o:p></div>
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<a href="https://practicalbioethics.org/" target="_blank">Advance care planning </a>is not about death and dying. It’s about how you want to live.<o:p></o:p></div>
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<b><span style="color: red;">April 16, 2020<o:p></o:p></span></b></div>
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<b><span style="color: red;">National Healthcare Decisions Day<o:p></o:p></span></b></div>
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<span style="color: red;">Founded in 2008, <a href="https://practicalbioethics.org/nhdd" target="_blank">National Healthcare Decisions Day</a> is a collaborative effort of national, state and community organizations to i<span style="background: white; font-family: Arial, sans-serif;">nspire, educate and empower the public and providers about the importance of <a href="https://practicalbioethics.org/" target="_blank">advance care planning</a>.</span></span><span style="font-family: "Times New Roman", serif;"><o:p></o:p></span></div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-70201818720930948932020-03-16T12:45:00.000-07:002020-03-16T12:45:05.076-07:00A Family’s Journey to Peace of Mind<div class="MsoNormal" style="caret-color: rgb(0, 0, 0); font-family: Calibri, sans-serif; font-size: 12pt; margin: 0in 0in 0.0001pt; text-size-adjust: auto;">
<span style="font-size: 12pt;">Jama’s mom had been living in a long-term acute care facility on dialysis and a ventilator for nearly five months. Dad was by her side 24/7.</span></div>
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“One day, as my sister and I were walking out, I looked at her and said, ‘I think mom is dying,’” said Jama. “We started crying. Of course mom was dying, but no one had told us…or Mom.”<o:p></o:p></div>
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<b>Call the Center<o:p></o:p></b></div>
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Jama and her siblings began insisting that the doctors at least be honest with their dad about Mom’s failing condition. Dad thought he had to seek heroic efforts because of religious beliefs. All along Mom thought she was going to get well enough to go home. <o:p></o:p></div>
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“There wasn’t anyone to guide us through it,” said Jama, “so I called the Center.<o:p></o:p></div>
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“The staff there helped us understand who we needed to ask for what and how to talk honestly with Dad about Mom’s situation. When the doctors finally told Mom that she would live on a vent for the rest of her life, she said take it out. She died peacefully within hours.<span class="Apple-converted-space"> </span><o:p></o:p></div>
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“The work and wisdom of the Center helped move us from anguish to grief and finally peace of mind.”<o:p></o:p></div>
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<b>Monthly Giving<o:p></o:p></b></div>
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That was five years ago. Today, Jama and her husband Carl are monthly donors to the Center because they want to ensure that the resources that helped them are there for others.<o:p></o:p></div>
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“The <a href="https://practicalbioethics.org/" target="_blank">Center </a>helps people in so many personal ways,” said Jama. “They focus on education and policy issues that aren’t trendy or glamorous but that we, and everybody we know, will eventually face.”</div>
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<a href="https://1.bp.blogspot.com/-a2jz-beGI5s/Xm_WQFYomGI/AAAAAAAAB8o/LEJwcHIxKMw1wQvBeXfFANvtCZk5yA5nwCLcBGAsYHQ/s1600/Wedding%2B%2B14.jpg" imageanchor="1" style="clear: right; display: inline !important; float: right; font-size: 12pt; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="271" data-original-width="358" height="151" src="https://1.bp.blogspot.com/-a2jz-beGI5s/Xm_WQFYomGI/AAAAAAAAB8o/LEJwcHIxKMw1wQvBeXfFANvtCZk5yA5nwCLcBGAsYHQ/s200/Wedding%2B%2B14.jpg" width="200" /></a><o:p> </o:p><a href="https://1.bp.blogspot.com/-SM9k9GAgcIY/Xm_WPUATfzI/AAAAAAAAB8c/sAi1gL35V50vmNuMWohTPLGnjyAxhyiQgCLcBGAsYHQ/s1600/Jamas%2BParents%2BTrip%2B2005%2B35.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="533" data-original-width="800" height="133" src="https://1.bp.blogspot.com/-SM9k9GAgcIY/Xm_WPUATfzI/AAAAAAAAB8c/sAi1gL35V50vmNuMWohTPLGnjyAxhyiQgCLcBGAsYHQ/s200/Jamas%2BParents%2BTrip%2B2005%2B35.jpg" width="200" /></a><a href="https://1.bp.blogspot.com/-k3JUSKz2Tjs/Xm_WPeYvQzI/AAAAAAAAB8Y/MPDziQ9eTzM0000IJ4ZdjnQ_wgo5qQP-gCLcBGAsYHQ/s1600/Smith%2BFamily%2BThanksgiving%2B2007%2B66.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="504" data-original-width="360" height="200" src="https://1.bp.blogspot.com/-k3JUSKz2Tjs/Xm_WPeYvQzI/AAAAAAAAB8Y/MPDziQ9eTzM0000IJ4ZdjnQ_wgo5qQP-gCLcBGAsYHQ/s200/Smith%2BFamily%2BThanksgiving%2B2007%2B66.jpg" width="142" /></a></div>
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Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-90314742665004510962019-09-23T14:38:00.000-07:002019-09-23T14:38:49.308-07:00Ethical Issues in OB/GYN Inspire Board Service<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-rWlXm60TtTU/XYk62BlDB2I/AAAAAAAAB6Q/E5svQft-a6YCElGTpILtLGb7yg6UTHj_wCLcBGAsYHQ/s1600/sandra-stites-square.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="667" data-original-width="667" height="200" src="https://1.bp.blogspot.com/-rWlXm60TtTU/XYk62BlDB2I/AAAAAAAAB6Q/E5svQft-a6YCElGTpILtLGb7yg6UTHj_wCLcBGAsYHQ/s200/sandra-stites-square.jpg" width="200" /></a></td></tr>
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<i>Sandra Stites, MD<o:p></o:p></i></div>
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<i>Board Chair, Center for Practical Bioethics</i></div>
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<span style="font-size: 12pt;">My first exposure to the Center for Practical Bioethics was as a guest at the Annual Dinner event with my husband, who is a physician at the University of Kansas. But it was my experience as an OB/GYN physician that really sparked my desire to get more involved. </span></div>
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In my practice as an OB/GYN, and especially in OB, ethics comes into play from day one throughout pregnancy. I can remember one of my first patients decades ago, a senior at a local high school, who wasn’t allowed to graduate because she was pregnant. <o:p></o:p></div>
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And with the growth of technology in medicine we now have sophisticated prenatal testing, which raises questions about what to do with the information, how it’s presented, how it’s perceived and who makes decisions about what happens. Then we get to birth. If delivery is premature or there’s a problem with delivery or birth defects, again, questions arise about how this is handled, perceived and who makes decisions.<o:p></o:p></div>
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<b>Lucky Kansas City</b><o:p></o:p></div>
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Knowing not only that there is help locally to address those types of situations but also of the Center’s national influence underscores how lucky Kansas City is to have this resource. <o:p></o:p></div>
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Good friends, such as a former board chair of the Center, Cynthia Spaeth, advised me a few years ago that if I ever went looking for a place to devote my spare time, I should think about volunteering for the Center. <o:p></o:p></div>
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I joined the Center’s board in 2015, and will soon start my second year as its chair. I can honestly say I have never worked with a governing board with 100% of its members so invested, from so many walks of life and diverse points of view, all of which allows for well-rounded discussion and constructive strategic guidance. People walk up to me and other board members asking how they can be part of this. That’s because of the work of the board and a small staff that works extremely hard. <o:p></o:p></div>
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<b>Community-Based Bioethics</b><o:p></o:p></div>
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If asked to name one challenge we face as an organization, I would say funding. Bioethics isn’t a typical funding category. The field’s breadth and complexity, involving multiple disciplines, makes general operating expenses especially difficult to secure. The one or two foundations that focus on bioethics are primarily interested in research, not practical community-based bioethics.<o:p></o:p></div>
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Nevertheless, I have no doubt that, as it has for nearly 36 years, the Center will continue to thrive. I am particularly encouraged by our growing emphasis on earned income through consulting contracts and fee-based agreements, such as the Clinical Ethics Service, offering hospitals support for ethics consultations, ethics committee management, protection of human subjects involved in research, and advance care planning programs. <o:p></o:p></div>
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It is my honor and privilege to serve, to grow with the Center, and to further its vision to advance the health and dignity of all persons.</div>
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<i>By Sandra Stites, MD<o:p></o:p></i></div>
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<i>Board Chair, <a href="https://practicalbioethics.org/" target="_blank">Center for Practical Bioethic</a></i><a href="https://practicalbioethics.org/" target="_blank">s</a></div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-15397280367979111952019-09-05T06:10:00.000-07:002019-09-05T06:10:29.140-07:00Advance Care Planning and the Legacy of Dr. Richard Payne<div class="MsoNormal" style="caret-color: rgb(0, 0, 0); font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt; text-size-adjust: auto;">
The African American Advance Care Planning Palliative Care Network is the brainchild of the late Dr. Richard Payne, a man of great honor and distinguished character. I’ll always remember being introduced to him, initially by phone in 2006, when I was working on my Master’s in Social Work. My thesis was on African Americans at the end of life and I wanted to ask Dr. Payne if I could reference his work. He not only said yes but also became a mentor to me. I had the opportunity to work with him on multiple projects.<span class="Apple-converted-space"> </span><o:p></o:p></div>
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<br />Dr. Payne’s exemplary leadership was always balanced with his love for his family and his fellow man. I believe that God graced my life for 12 precious years to work with Dr. Payne and to become friends with him and his devoted wife, Terrie—the love of his life.<o:p></o:p></div>
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Our first Network meeting in Durham was indeed sacred. I learned that the meeting room where we gathered at Duke University’s Divinity School was the same place where Dr. Payne had first spoken on the topic of AA-ACP. We felt an air of peace and solidarity of mind for the work at hand—the right place, the right time, and for the right reason. Sacred indeed.<o:p></o:p></div>
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I believe I speak for us all in the Network when I say that we are committed to advancing equitable healthcare and service delivery to the most vulnerable persons in our society. I am honored to be a part of that mission. As we move forward in furthering the work of the AA-ACPN, we also continue the monumental legacy of Dr. Payne’s incredible lifework and vision.<o:p></o:p></div>
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<b><span style="font-family: Calibri, sans-serif;">GLORIA THOMAS ANDERSON, PhD, LMSW</span></b><o:p></o:p></div>
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Advance Care Planning & Health Living Through Faith<o:p></o:p></div>
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African American Advance Care Planning Palliative Care Network member</div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-80137694250340590982019-08-05T13:53:00.000-07:002019-08-15T13:23:59.437-07:00Walking Humbly with a Sacred Mission<div class="MsoNormal" style="caret-color: rgb(0, 0, 0); font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt; text-size-adjust: auto;">
<span style="font-size: 11pt;">When our colleague and mentor, Dr. Richard Payne, died suddenly in January 2019 following a short but aggressive illness, we gathered in Kansas City in April to celebrate his life and to explore how we might continue his legacy work in advance care planning with African American faith communities.</span><span class="Apple-converted-space" style="font-size: 11pt;"> </span></div>
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Richard had an idea of establishing a network of leaders, believers, doers, mentors and healers – ministers of the body and physicians of the soul – to bring this sacred work to fruition. We knew his death meant that without his physical presence, we had to capture his essence in another way. So, we invited the most dedicated, brilliant, innovative and inspirational group of leaders we could find already at work in this space, often inspired and encouraged by Dr. Payne’s life and work. We asked them to join us at the end of July and first of August in a gathering at Duke Divinity School – if not in person, then virtually. Nearly everyone in the room and online had been profoundly touched and nurtured by Dr. Payne in our work as ministers and pastors, social workers and community advocates, physicians and researchers, nurses and ethicists. They all said yes and many added, “Amen.”<o:p></o:p></div>
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Terrie Payne opened our meeting asking us to determine how we would act on the conviction about her Richie’s life that called us to chart the next steps of this journey. And so, we began. Rolling up our sleeves, we got to work.<o:p></o:p></div>
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CPB’s role as convener was to facilitate and unleash the energy and imagination of one of the most powerful group of leaders ever assembled to discern this unchartered, and as yet incomplete, journey.<o:p></o:p></div>
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Our work will require investigating and recalling dozens of efforts and myriad resources spanning decades of work while re-creating new approaches and tools. We will discern the leadership and evolving network to carry this work deeper into our communities and beyond. This will be Rich’s legacy and it will become ours. Stay tuned and join in the journey.<o:p></o:p></div>
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Pictured below are those who were with us in person on Day 2. In addition, we were joined online by Yvonne Delk, Chris Brady, Lauren Van Scoy and Vivian Anugwom. <o:p></o:p></div>
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<b>From left to right on the Back Row:</b><o:p></o:p></div>
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<span style="background-color: white; caret-color: rgb(51, 51, 51); color: #333333; font-family: Calibri, sans-serif; text-size-adjust: auto;">Kimberly Johnson, Patrick Smith, Janice Bell, Cindy Leyland, Cynthia Carter Perilliatt, Marisette Hasan, Tammie Quest, Julie Boudreau, Corey Kennard, Harriet Holloway, Diane Deese, Ronit Elk</span></div>
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<b>Front Row: <span class="Apple-converted-space"> </span></b><o:p></o:p></div>
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Gloria Ramsey, John Carney, Karen Bullock, Toya Booth, Gloria Anderson, Terrie Payne, Gloria White-Hammond, Pamela Witt</div>
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Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-47054932077517529402018-10-16T11:53:00.000-07:002018-10-16T11:53:45.674-07:00 Film Series: Frankenstein Asks Us to Ponder What Is Monstrous<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-_nFpk8GI-IU/W8YzL8qzvBI/AAAAAAAAB2Q/sNGaTauJsYMWymnxbHjVP5zAxhaRB4MKQCLcBGAs/s1600/frankenstein-square.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="200" src="https://3.bp.blogspot.com/-_nFpk8GI-IU/W8YzL8qzvBI/AAAAAAAAB2Q/sNGaTauJsYMWymnxbHjVP5zAxhaRB4MKQCLcBGAs/s200/frankenstein-square.jpg" width="200" /></a></div>
This year marks the 200th anniversary of the publication of Mary Shelly’s <i>Frankenstein</i>: or, the <i>Modern Prometheus</i>. The 1931 Universal Studios’ film adaptation of <i>Frankenstein</i> brought Shelly’s story to a mass audience. The mad Dr. Frankenstein, consumed with the desire to discover and control the secret of life, and the Monster he created have shaped our cultural narrative around the tension between science and technology and nature and the divine ever since.<br /><br />
<i>Frankenstein</i> typifies our perennial worries about the dangers of human hubris in pursuit of scientific knowledge and control over the natural world. In the film, when Dr. Frankenstein sees the first twitching movements of his creation, he exclaims “It’s alive! In the name of God! Now I know what it feels like to be God!” In this pivotal scene, we find Dr. Frankenstein not only marveling at his creative power, but implicitly declaring that artificial life will inevitably be monstrous because it lacks the sacred touch of the (truly) divine. With each new advance in technology, like reproductive technologies from IVF to gene editing, there are those who worry that humanity is overstepping the natural bounds of our domain.<br />
<br />The film raises additional interesting questions. Dr. Frankenstein unknowingly inserts the abnormal brain of a criminal into the patchwork body he has created. Before discovering this mistake, he is confident in his experiment. After it is revealed, he too becomes horrified by his creation.<br />
<br />The film also introduces Dr. Frankenstein’s assistant Fritz who has a physical disability, a hunchback. (Universal Studios’ Rule #4 for horror films requires a secondary character of weird appearance.) Fritz torments the Monster, terrorizing him with a lighted torch. The film version of the Monster is not just scary but scared himself.<br />
<br />Is Frankenstein’s creation monstrous because he is unnatural or because of his damaged brain or because he is abused and unloved? Were the outcomes determined by the very act of crossing sacred boundaries or only by the subsequent failure to engage with human artifice in ways that honor everyday human values? In the tradition of all great literature and film, Frankenstein does not neatly answer these timeless but ever more urgent questions. We, the audience, must wrestle with them ourselves and with each other.<br />
<br /><i>Written by Leslie Ann McNolty, DPS, Program Associate with the <a href="https://practicalbioethics.org/" target="_blank">Center for Practical Bioethics</a></i><br />
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<h2>
Bioethics Film Series</h2>
From reproduction to end of life, bioethical issues affect all of us. What better and more fun way to think about them than film?
The Center for Practical Bioethics is thrilled to partner with the Tivoli Cinema in Kansas City to present the Bioethics Film Series featuring three iconic films.
Following screenings at 7:00 pm, Center staff will lead discussion of each film’s major themes. Tickets may be purchased from the Tivoli in advance or at the door (Adults $9, Students $7)<br />
<br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">
Frankenstein</a><br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">Thursday, October 18, 2018</a><br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">7:00pm</a><br />
<br />
Tivoli Cinemas
<br />
4050 Pennsylvania
<br />
Kansas City, MO 64111Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-58348973421194984262018-10-09T01:00:00.000-07:002018-10-09T03:47:08.360-07:00Film Series: Watching Big Fish Next to My Mother in the Hospital<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-ytaW27iWrmk/W7unDN-P9WI/AAAAAAAAB2E/okZa8N0192UB14v-HZX7H9H5M_PdNr6CgCEwYBhgL/s1600/big_fish.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="200" src="https://2.bp.blogspot.com/-ytaW27iWrmk/W7unDN-P9WI/AAAAAAAAB2E/okZa8N0192UB14v-HZX7H9H5M_PdNr6CgCEwYBhgL/s200/big_fish.jpg" width="200" /></a></div>
Now, this is an interesting coincidence, as I was watching “Big Fish” on Amazon Video whilst visiting my mother during her last week in this world. I was summoned to Portland by my physician brother who told me that my mother was dying. She had been ill and we expected her to pass a year ago, but she rallied and was discharged from hospice. But now, she was having another heart attack and we had decided that with her progressive dementia and renal failure, she would not undergo dialysis. We had this discussion with her before the first heart attack and she had agreed with the plan. She was lucid enough to understand the consequences of this decision. As she became progressively more demented, we confirmed with another discussion. She felt that her life was complete and she was ready to go. My father had passed away 6 years ago, and most of their friends had died. She had suffered increasing dementia, complete deafness and renal failure. She was struggling to maintain her dignity with loss of control of her life and basic bodily functions. The heart failure was going to be the last straw.<br />
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I watched the movie whilst she was sleeping and was actually surprised that there was not much discussion about this kind of stuff in this movie. This is a story about a young man who is coming to terms with the tales that his father told him when he was young. The son thought that the stories were just that, stories, and he did not respect his father as he perceived them as lies. Towards the end of the movie, he finally comes to terms with his father’s identity through these stories, which were at least partially true and perhaps a little exaggerated. His father then dies and becomes the “Big Fish” that haunts the waters of the local river. Was it symbolic that the fish got away?<br />
<br />
So was this intentional, leaving out the elephant in the room. It was implied through the whole movie that the father was dying. He did not talk about his feelings, his love, legacy and his wishes for the living. They certainly did not talk about invasive therapy and life support. Maybe, if they did, no one will watch the movie. At any rate, it seems like such a different death than the one I was witnessing. We discussed all these things as a family with my mother. She also had lived an amazing life, surviving the Japanese occupation in China, the communist takeover, decades in the Middle East and watching her children vanish into the West, another “Big Fish” story, but this one did not get away.<br />
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<span style="font-size: x-small;">* Written by Jane Lombard, MD, MBA a board member with the <a href="https://practicalbioethics.org/" target="_blank">Center for Practical Bioethics. </a></span><br />
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<h2>
Bioethics Film Series</h2>
From reproduction to end of life, bioethical issues affect all of us. What better and more fun way to think about them than film?
The Center for Practical Bioethics is thrilled to partner with the Tivoli Cinema in Kansas City to present the Bioethics Film Series featuring three iconic films.
Following screenings at 7:00 pm, Center staff will lead discussion of each film’s major themes. Tickets may be purchased from the Tivoli in advance or at the door (Adults $9, Students $7)<br />
<br /><a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">
Big Fish</a><br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">Thursday, October 11, 2018</a><br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">7:00pm</a><br />
<br />
Tivoli Cinemas
<br />4050 Pennsylvania
<br />Kansas City, MO 64111<br />
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Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-44781858720984057072018-10-08T11:57:00.000-07:002018-10-09T03:47:25.211-07:00Film Series: Big Fish Emphasizes the Importance of Communication<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-ytaW27iWrmk/W7unDN-P9WI/AAAAAAAAB2A/6GBN3xRKd7QG1Gyvr0ZcstIKku1BE4AGwCLcBGAs/s1600/big_fish.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="200" src="https://3.bp.blogspot.com/-ytaW27iWrmk/W7unDN-P9WI/AAAAAAAAB2A/6GBN3xRKd7QG1Gyvr0ZcstIKku1BE4AGwCLcBGAs/s200/big_fish.jpg" width="200" /></a></div>
Dying is hard work. Preparing to die is hard work. Watching someone you love die is hard work. It is the hardest work a family does. Want to know another thing that can be hard work in a family?<br />
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Communication.<br />
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Big Fish struck a chord because I encounter so many families with crushingly difficult personal relationships with one another. Having a challenging communication struggle with a family member, especially a parent, can sometimes be “managed” to get through family events--holidays, graduations. In Big Fish, the son simply moved thousands of miles away to avoid the issue. Absent a crisis, there are many ways to get through the family communication muddle in closer proximity and make it past the bad times. Known family “work-arounds” are paths well worn. Happily, eventually, people forget that the graduation party was a disappointment because of one family member’s behavior, or the memory fades of the Christmas that part of the family did not show up even though they were expected, and preparations had been made.<br />
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But death in the family is different. It just happens once for each of us. When that does not “go well” as we say, everyone remembers. The consequences can be dire and permanent, relationships irrevocably destroyed. At the time a loved one is dying, a lifetime of good family communication is worth its weight in gold. The stakes are the highest they can be.<br />
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Big Fish is about many things, but family communication or lack thereof is at its heart. It is about the consequences of talking without really communicating and the debilitating frustration that can ensue. The son’s strategy of literally distancing himself by living abroad crumbled with the news of his dad’s cancer being beyond chemo treatments. The achingly beautiful but fantastical stories Dad tells Will and others about his life (mostly absent from the family home) evoked entirely different responses from his wife and daughter-in-law than they did from his son. Will’s struggle with “believing for too long” and then learning that what his dad told him “was impossible” became too much to bear. Without a lifetime of good communication, Will arrived at his dad’s deathbed with an empty tank. Many of us share Will’s need to set the record straight, to take one last shot at getting his dad to come clean, to tell the truth and to make things right. “I want to know who you really are!” And dad’s frustrated reply “Who do you want me to be?” Will: “YOURSELF, just yourself!” And dad’s angry reply, “I have been nothing but myself since the day I was born, and if you can’t see that, it’s your failing, not mine.” Will stalks out.<br />
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Later, Doc gets a couple of the best lines as he enters the quiet room to check on the unconscious Edward with Will sitting beside him. “I am glad to see you are not trying to have a heartfelt talk. One of my greatest annoyances is people trying to talk to people who can’t hear…”<br />
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In the next encounter, happily, Will has made some discoveries among his father’s papers corroborating the stories, and his belief window has been re-opened enough to accommodate his new curiosity. His own reconnaissance work has surfaced chunks of truth in the formerly “impossible” tales. Will needed this evidence to allow him finally to embrace his father. While the film is lovely to watch—the use of imagery through water and color and light are eye-popping—the part of this movie for me that makes it unforgettable is when Will finally understands his dad’s need for him to join the telling of the story. Will does so with grace and with the imagination his father longed for him to find. A father’s final gift. And from the Pearl Jam song at the end as the credits roll: “And the road the old man paved, the broken seams along the way, the rusted signs left just for me, he was guiding me. Love, his own way.”<br />
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<span style="font-size: x-small;">* Linda Ward is the Vice President of the <a href="https://practicalbioethics.org/" target="_blank">Center for Practical Bioethics</a><br /><br /><a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">* Visit the website for a list of upcoming events at the Center for Practical Bioethics. </a></span><br />
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<h2>
Bioethics Film Series</h2>
From reproduction to end of life, bioethical issues affect all of us. What better and more fun way to think about them than film?
The Center for Practical Bioethics is thrilled to partner with the Tivoli Cinema in Kansas City to present the Bioethics Film Series featuring three iconic films.
Following screenings at 7:00 pm, Center staff will lead discussion of each film’s major themes. Tickets may be purchased from the Tivoli in advance or at the door (Adults $9, Students $7)<br />
<br /><a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">
Big Fish</a><br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">Thursday, October 11, 2018</a><br />
<a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">7:00pm</a><br />
<br />
Tivoli Cinemas
<br />4050 Pennsylvania
<br />Kansas City, MO 64111<br />
<br />
<br />
<br />
<br />Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-14352948005507203022018-10-03T10:43:00.001-07:002018-10-03T10:46:25.376-07:00Gattaca Continues to Spark Pertinent Bioethics Discussions<!--[if gte mso 9]><xml>
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<a href="https://2.bp.blogspot.com/-7a2lofmpc80/W7T_mrRcfNI/AAAAAAAAB10/BT1prdHU5bs9fwjDa0E0x-CeoOWBRdosgCLcBGAs/s1600/gattaca-square.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="200" src="https://2.bp.blogspot.com/-7a2lofmpc80/W7T_mrRcfNI/AAAAAAAAB10/BT1prdHU5bs9fwjDa0E0x-CeoOWBRdosgCLcBGAs/s200/gattaca-square.jpg" width="200" /></a></div>
It’s October and the Center for Practical Bioethics is about
to kickoff our fall film series: <a href="http://practicalbioethics.org/events-education/events-calendar.html" target="_blank">Science, Medicine &Unintended Consequences.</a> Our first entry in the three-film series is Gattaca
(1997), staring Ethan Hawke, Uma Thurman, and Jude Law. Directed by Andrew
Niccol, Gattaca is set in a near-future where reproductive eugenics is
available to would-be parents. There we find a stratified society, in which
opportunity is reserved for those with tailored genes (and presumably parents
rich enough to pay for them), even while genetic discrimination is technically
illegal.<br />
<br />
<o:p></o:p></div>
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The movie gives shape to the various anxieties that
accompany discussion of genetic engineering in humans. Given the ability to
identify appealing genetic traits, what would happen if we designed our
offspring? Given the knowledge of how our genes will affect our future health,
what would happen if that information were available to potential employers. We
see both the effects it could have on our society; regular genetic screening, structural
discrimination, but also the effects it could have on individuals; parents
alienated from their children, crises of identity and inadequacy.<o:p></o:p></div>
<div class="MsoNormal">
<br />
Overall, the world of Gattaca is depicted as clearly
dystopic, but twenty years after the film’s production consumer genetic
screening products are finding their way into the markets, and powerful genetic
editing technologies are being used on human cells for the first time. I don’t
believe that these technologies will necessarily lead us to a dystopian future,
but movies like Gattaca remind us that they can cast long shadows. Careful
consideration, a robust ethical framework, and broad-based discussion are
essential to successfully identifying and avoiding the risks associated with
emerging technologies. <o:p></o:p></div>
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<br />
On that note, I hope that everyone enjoys our screening of
Gattaca and the discussion that will follow! <o:p></o:p></div>
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<i style="mso-bidi-font-style: normal;"><br />Matthew Pjecha is a
Program Associate at the <a href="http://practicalbioethics.org/" target="_blank">Center for Practical Bioethics.</a><o:p></o:p></i></div>
<!--EndFragment--><br />Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-52170400922241607612018-01-18T04:22:00.000-08:002018-01-18T04:22:57.147-08:00Fostering Civil Discourse - and Humor - in a Partisan Era<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-sl978iklTM0/Vq9m2dN3SlI/AAAAAAAABac/8KBxa7tY5jgwqQiOgKF8i9Ox3njrVcI6QCPcBGAYYCw/s1600/Terry%2BRosell.092612.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="189" data-original-width="122" height="320" src="https://1.bp.blogspot.com/-sl978iklTM0/Vq9m2dN3SlI/AAAAAAAABac/8KBxa7tY5jgwqQiOgKF8i9Ox3njrVcI6QCPcBGAYYCw/s320/Terry%2BRosell.092612.jpg" width="206" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">By Tarris Rosell, PhD, DMin</td></tr>
</tbody></table>
Fifteen years ago in the aftermath of 9/11, I was invited to respond as an Ethics panelist to a new, self-published book, <i>The Fundamentals of Extremism</i> (Blaker, et al., New Boston Books, Inc., 2003). The authors aimed to expose “the Christian Right” as a danger to democracy. While I sympathized with chief editor Kimberly Blaker’s agenda, the book itself struck me as taking much the same rhetorical tack as the religious fundamentalists that she and her co-authors vociferously critiqued.<br />
<br />
My invitation to a book-signing event came with the expectation that I, a progressive clergyman ethicist, would be an enthusiastic proponent who might also help sell a few books. While preparing remarks, I was challenged with the dilemma of not wanting to disappoint a young author with worthy aims, while also engaging in truth-telling as I saw it. Most importantly, I wished not to support or practice the very thing we both condemned: divisive, speculative, paranoid, demonizing fundamentalist—or even anti-fundamentalist—rhetoric. Unfortunately, to my Ethics eyes, <i>The Fundamentals of Extremism</i> was pretty much what it denounced.<br />
<br />
So, for my panel presentation, I resorted to writing poetry, or possibly doggerel - an Ethics response in rhyme.<br />
<br />
It seemed to me then, and now, that our ideological divisions are ameliorated best by civil discourse laced with mutual respect and a dose of good humor. This is difficult, and especially so when the stakes appear high, as they did back then, and now. Yet, if we who disagree with political or religious extremism engage in the same sort of rhetoric and behaviors as those we oppose, if our own claims are factually challenged anecdotes and innuendo, we only foster more schism and less democracy.<br />
<br />
This is the poem I wrote (with minor edits). I think it still works in the partisan era of Trump.<br />
<br />
<h3 style="text-align: center;">
An Anti-Fundamentalist Confession</h3>
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<br /></div>
<div style="text-align: center;">
Tarris Rosell</div>
<div style="text-align: center;">
© 2003, 2018</div>
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<br /></div>
<div style="text-align: center;">
I’m fundamentally opposed to fundamentalism,</div>
<div style="text-align: center;">
And separate myself from those who foster any schism.</div>
<div style="text-align: center;">
I feel an obligation to expose the boorish Right</div>
<div style="text-align: center;">
And other such extremists whom the rest of us must fight.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I fear their chief ambition is to slay democracy;</div>
<div style="text-align: center;">
Their paranoia leads them to engage conspiracy.</div>
<div style="text-align: center;">
They’d have us all subservient to Fundie* ways of being,</div>
<div style="text-align: center;">
Dichotomize and simplify our thinking and our seeing.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Black and white, or good and bad, on absolutist values</div>
<div style="text-align: center;">
Strikes me as absolutely wrong, as I’m compelled to tell you.</div>
<div style="text-align: center;">
Yet, in my strident anti-fundamentalist critique,</div>
<div style="text-align: center;">
Another thought has struck me, and has left me feeling meek.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
One problem with Conservatives in all their stridency</div>
<div style="text-align: center;">
Is one that tempts both Right and Left as human tendency.</div>
<div style="text-align: center;">
While exorcism of their demonizing fits the facts,</div>
<div style="text-align: center;">
Sometimes I look into the mirror and see “Them” looking back.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
The rhetoric we choose to use, the labels we assign,</div>
<div style="text-align: center;">
The latitude we grant to those across the picket line,</div>
<div style="text-align: center;">
Our attitude of hubris, or of apt humility—</div>
<div style="text-align: center;">
All these demark the difference between Us and Them</div>
<div style="text-align: center;">
Or We.</div>
<br />
* A pejorative slang abbreviation that refers to religious fundamentalists of any religion or denomination.<br />
<br />
<i>Dr. Rosell is the Rosemary Flanigan Chair at the <a href="http://practicalbioethics.org/">Center for Practical Bioethics</a>. He is also Professor of Pastoral Theology at Central Baptist Theological Seminary, Clinical Professor, History and Philosophy of Medicine at the University of Kansas Medical Center, School of Medicine, and Chair of the Department of Bioethics at Kansas City University of Medicine and Biosciences.</i><br />
<br />Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-81900606362522209472017-12-11T09:37:00.000-08:002017-12-11T09:37:01.913-08:00Ethics, Morality and Genomic Science: Can We Play God the Way God Plays God?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-ti1weqJfdic/Wi7B-9kqbVI/AAAAAAAAByk/YeCy1whTQDgN56K8XqTe5BAyUzffrRd7ACLcBGAs/s1600/richard-payne.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="300" data-original-width="300" height="200" src="https://2.bp.blogspot.com/-ti1weqJfdic/Wi7B-9kqbVI/AAAAAAAAByk/YeCy1whTQDgN56K8XqTe5BAyUzffrRd7ACLcBGAs/s200/richard-payne.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Richard Payne, MD</td></tr>
</tbody></table>
The wisdom of humans tinkering with nature has been challenged throughout the ages based on a common storyline: humans unwisely tamper with nature with disastrous consequences for the creator when we cross a line previously reserved for the deity. Three decades ago, in the early days of gene engineering, scientists raised ethical and moral concerns about “playing God.” They weren’t opposed to interrupting the natural order to cross breed animals and plants or to cure or treat disease. Rather, they warned against exercising the power of science and technology without sufficient regard for its consequences, admonishing not to cross boundaries that manipulated nature in ways traditionally thought only an omniscient and benevolent God could or should do. <br /><br />
Recently, a new study reported that defective genes in an embryo were edited and repaired through a revolutionary technique known as CRISPR-Cas9. The procedure was used to eliminate hypertrophic cardiomyopathy – a devastating heart disease and the most common cause of death in otherwise healthy young athletes. Use of this technology is under intense scrutiny by scientists and ethicists to understand its risks and benefits. Moral, ethical and practical concerns are particularly strong as applied to genetic engineering of sperm and egg cells, because such “germline” editing not only affects the individual embryo, but also future generations.<br />
<br />
So, does germline gene editing “cross the line?” There are strong arguments in support of the wise use of CRISPR-Cas9 technologies in medicine. Obvious examples relate to eliminating types of cancer, cardiovascular and neurological diseases by selective editing genes of embryos with identifiable mutations that cause these disorders. The study reporting correction of the cardiomyopathy mutation specifically targeted the abnormal gene, indicating that the technology is becoming more precise and safer in a remarkably short period of time. This is why the National Academy of Sciences, Engineering and Medicine and the FDA have ethics guidelines permitting research on germline editing and engineering. The ethical principles behind these safeguards include the notion that genomic editing technologies will be used by appropriately trained scientists in transparent processes to promote well-being for all humans.<br />
<br />
However, there are concerns we should not ignore. Germline editing requires monitoring of future generations of the embryo’s offspring, which raises a host of practical, legal and regulatory issues currently unaddressed. Furthermore, use of gene editing to enhance human characteristics such as physical appearance and cognitive performance is less ethically justifiable and subject to potential abuse. Despite these concerns, many prominent scientists warn that halting research and potential medical applications for fear of unknown risks and unaddressed ethical questions is also risky, and poses problems by not addressing current moral concerns—such as application of these technologies to reduce the number of abortions and loss of embryos.<br />
<span style="white-space: pre;"> </span><br />
The late theologian-ethicists Paul Ramsey and Alan Verhey raised the possibility that “playing God” may not always be negative, with one qualification. They wrote that humans should only “play God, the way God plays God.” By that they meant that it is morally appropriate for humans to research and explore the natural world and to wisely use wonders such as CRISPR-Cas9 because God made humans in his image and made us stewards of creation. We humans “can play God the way God plays God,” they argue, if we intend and promote human flourishing through our scientific and medical discoveries and technologies, and if we make these advances available to all humankind by seriously attending to social justice and fairness. This is truly wise counsel and worthy of application as we inevitably push forward on our revolutionary genomic journey. It also may be much more challenging than the science.<br />
<br />
<br />
Richard Payne, MD, is the John B. Francis Chair at the <a href="http://practicalbioethics.org/">Center for Practical Bioethics</a>, Kansas City, MO, and the Esther Colliflower Professor of Medicine and Divinity (Emeritus) at Duke University.<br />
<div>
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Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-40723602963776271992017-10-12T08:52:00.000-07:002017-10-12T13:29:21.092-07:00Gun Violence: Prevention by Paying Attention<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-sl978iklTM0/Vq9m2dN3SlI/AAAAAAAABac/8KBxa7tY5jgwqQiOgKF8i9Ox3njrVcI6QCPcBGAYYCw/s1600/Terry%2BRosell.092612.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="189" data-original-width="122" src="https://1.bp.blogspot.com/-sl978iklTM0/Vq9m2dN3SlI/AAAAAAAABac/8KBxa7tY5jgwqQiOgKF8i9Ox3njrVcI6QCPcBGAYYCw/s1600/Terry%2BRosell.092612.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tarris Rosell, DMin, PhD</td></tr>
</tbody></table>
In a time of heightened anxiety about gun ownership and gun violence, the theme of this blog may already have some “Second Amendment People” reaching for their Glocks in self-defense. Or those impassioned for increased regulation of gun sales and ownership may be anticipating a welcome shot in the arm of support for that cause, especially in the wake of “Las Vegas”— the newest city whose name now depicts a national tragedy.<br />
<br />
While I am unafraid to take on proponents of unfettered gun ownership and, as a life-long gun owner myself, I still remain an ardent proponent of tougher laws restricting access and distribution of firearms, this is not the tack I am taking here. The moral of this message is that we ought to pay attention as an ethically astute means of community care and also gun violence prevention.<br />
<br />
To what or whom should attention be paid?<br />
<br />
<h3>
Lessons from Sandy Hook</h3>
<br />
I attended a community forum on October 9, 2017, organized by the Heartland Coalition Against Gun Violence, a program of Grandparents Against Gun Violence, and with co-sponsors that included the Center for Practical Bioethics. Plenary speaker Nicole Hockley urged us to pay attention to signs of a potential shooter. She claims that most incidents of gun violence are preventable, not so much by reducing the number of weapons (although she is not opposed to such efforts), but by identifying those whose trajectory of emotional-relational distress seems headed towards an act of violence, most often involving self-harm.<br />
<br />
As the Public Service Announcement recently released by Hockley’s organization compellingly demonstrates, interventions can happen only if we are paying attention to those lurking in a lonely background. The 2½ minute YouTube video, “Evan,” is a must see and show for teachers, clergy, parents and other community leaders (https://www.youtube.com/watch?v=A8syQeFtBKc).<br />
<br />
Ms. Hockley is the mother of Dylan, one of 20 young children killed by 20-year old Adam Lanza at Sandy Hook Elementary School on December 14, 2012. She and some other bereaved parents have put their mourning to work in a nonprofit called Sandy Hook Promise (www.sandyhookpromise.org). Hockley speaks to groups like the one in Kansas City about prevention by paying attention. She trains listeners to “recognize the signs of chronic social isolation or marginalization or rejection and how to practice inclusivity, which is step one onto a different pathway or not going down one towards self-harm.”<br />
<br />
The parents of Sandy Hook victims teach that “Gun violence is preventable when you know the signs. Learn them now.”<br />
<br />
<h3>
Warning Signs and Things You Can Do Today</h3>
<br />
The warning signs they point to include the following:<br />
<br />
<ul>
<li>a strong fascination or obsession with firearms, shooting techniques and mass shootings</li>
<li>overreacting or acting out aggressively for seemingly minor reasons</li>
<li>real or perceived feelings of being bullied</li>
<li>unsupervised, illegal or easy access to firearms and bragging about such access</li>
<li>gestures of violence and low commitment or aspirations towards work or school, or a sudden change in academic or work performance</li>
</ul>
<br />
It is natural to feel demoralized after yet another mass shooting such as we saw in Las Vegas, with 59 dead and nearly 500 injured. Yet there is hope. Nicole Hockley encourages all of us to “know that gun violence is preventable, and . . . if you’re frustrated by the lack of progress on this from a legislative perspective, just don’t give up, because there are things you can do today that can protect your own children and your own community if you promise to learn how.” (See <a href="http://people.com/crime/a-list-of-warning-signs-to-prevent-school-shootings-released-by-anti-gun-violence-nonprofit-sandy-hook-promise/">http://people.com/crime/a-list-of-warning-signs-to-prevent-school-shootings-released-by-anti-gun-violence-nonprofit-sandy-hook-promise/</a>)<br />
<br />
<i>Dr. Rosell is the Rosemary Flanigan Chair at the <a href="http://practicalbioethics.org/">Center for Practical Bioethics</a>. He is also Professor of Pastoral Theology at Central Baptist Theological Seminary, Clinical Professor, History and Philosophy of Medicine at the University of Kansas Medical Center, School of Medicine, and Chair of the Department of Bioethics at Kansas City University of Medicine and Biosciences.</i>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-86286217978127569962017-09-06T15:58:00.002-07:002017-09-06T15:59:16.445-07:00Lifetime Achievement in Bioethics<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-8H55ahOmmOU/WbB9F4z_BKI/AAAAAAAABxc/C_0drR26GbgzUy8GsjMciWrN_wYNt6r-gCLcBGAs/s1600/Myra%2B2017%2B%2528hi-res%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="265" src="https://3.bp.blogspot.com/-8H55ahOmmOU/WbB9F4z_BKI/AAAAAAAABxc/C_0drR26GbgzUy8GsjMciWrN_wYNt6r-gCLcBGAs/s400/Myra%2B2017%2B%2528hi-res%2529.jpg" width="400" /></a></div>
<h3>
</h3>
<h3>
Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities </h3>
Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.<br />
<br />
On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.<br />
<br />
Early in Christopher’s career at the <a href="http://practicalbioethics.org/">Center for Practical Bioethics,</a> she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.<br />
<br />
Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.<br />
<br />
In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.<br />
<br />
Christopher, who credits her success to early believers and supporters, will be honored along with Steven Miles, MD, who is recognized for his contribution to bioethics scholarship and devotion to the alleviation of suffering.<br />
<br />
In announcing the award, ASBH stated: “Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.”<br />
<br />
In response to the ASBH announcements, congratulations from national and local leaders in healthcare have poured in, as exemplified below:<br />
<br />
<i>Myra Christopher has long been a hero of mine. Her values and unwavering commitment to service represent a personal True North.</i><br />
<br />
<b>Ira Byock, MD, Founder & Chief Medical Officer</b><br />
Providence Institute for Human Caring, Torrance, CA<br />
<br />
<i>Myra Christopher is part of a group of pioneering women – in which I include Dame Cicely Saunders, Florence Wald and Elisabeth Kubler-Ross – each of whom stood up, powerfully and strategically, on behalf of people who are suffering. Because of Myra, the beginnings of a transformation towards person-centered care has begun.</i><br />
<b><br /></b>
<b>Diane Meier, MD, FACP, Director of the Center to Advance Palliative Care</b><br />
Mount Sinai Health System, New York, NY<br />
<br />
<i>Myra Christopher’s contributions to improving care for patients at the end of life are emblematic of some of the best features of bioethics. Rather than simply engaging in research (which she also does), she has shown how commitment and intelligent action can lead to changes in policy and practice that actually improve the lives of patients.</i><br />
<b><br /></b>
<b>David Magnus, PhD, Director of the Stanford Center for Biomedical Ethics</b><br />
Stanford University, Palo Alto, CA<br />
<br />
As we continue to wrestle with ongoing issues in bioethics (end-of-life care, protection of human subjects, pain management, etc.), as well as enter into new challenges in bioethics (new technologies, genomics, healthcare financing, etc.), we will all benefit from the legacy of your work and be better prepared to bring bioethics down to that “practical” level that you have so successfully advocated.<br />
<b><br /></b>
<b>Betty Drees, MD, FACP, FACE, Professor of Medicine and Dean Emerita</b><br />
University of Missouri-Kansas City School of Medicine, Kansas City, MOPractical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-53713384016827367022017-08-04T09:58:00.001-07:002017-08-04T09:58:30.588-07:00Whatever Happened to Long-Term Care Reform?<h3>
From the Trenches: A Prescription for Change</h3>
<div>
I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.<br />
<br />
<br />
The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things: <br />
<br />
<br />
1. Reform of the private insurance market with the goal of providing greater access to insurance coverage; <br />
<br />
2. Changes to Medicare, such as closing the prescription drug donut hole; and <br />
<br />
3. Changes to Medicaid. </div>
<div>
<br /></div>
<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://1.bp.blogspot.com/-vJBpd-yYSRg/WYSnIAuDK8I/AAAAAAAABwI/5Emm2Far0wAML2cKHKMgVJCyjsUx0CADwCLcBGAs/s1600/Steve%2BOxler.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1050" data-original-width="788" height="400" src="https://1.bp.blogspot.com/-vJBpd-yYSRg/WYSnIAuDK8I/AAAAAAAABwI/5Emm2Far0wAML2cKHKMgVJCyjsUx0CADwCLcBGAs/s400/Steve%2BOxler.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.</td></tr>
</tbody></table>
<br />
<h3>
Community Services Optional? </h3>
<br />
The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.<br />
<br />
<br />
That is the crux of the protest. People with disabilities and older adults do not want to return to the days of being sent to nursing homes as the only way to receive long-term care. The right to live in the community is worth a fight, and even arrest. Under federal law, when a person needs long-term care paid for by Medicaid, federal law guarantees access to a nursing home. Both the House and Senate ACA repeal legislation would reform Medicaid by converting it to a block grant program. States would ultimately manage the entire cost of Medicaid and would come under increasing financial pressure to eliminate optional services. Community services are optional. As are some of the categories of people who receive Medicaid for nursing home care. The end-result of eliminating services and/or categories of people would drastically reshape provision of long-term care.<br />
<br />
<br />
<br />
<h3>
Voluntary Program Not Viable</h3>
<br />
We need a public debate about long-term care reform. The ACA was many things but long-term care reform is not among them. Not really. Not as the law has been implemented. This I know. I was squarely in the middle of the sole provision of the ACA that addressed long-term care. That part of the law – Title VIII known as the Community Living Assistance Services and Supports Act (CLASS) – didn’t work. It wasn’t implemented and was eventually repealed.<br />
<br />
<br />
CLASS created a limited-benefit long-term care insurance program. Advocates for older adults and people with disabilities fought very hard to have CLASS included in the ACA. They had a large and active coalition comprised of individuals and organizations. The principle that unified the spectrum of aging and disability advocates was the goal of providing long-term care in community. <br />
<br />
<br />
The program, as designed, would have allowed individuals to purchase modest long-term care insurance coverage, administered by the federal government. The benefits would not have been sufficient to cover all long-term care costs, but it would have provided modest financial assistance to help people remain in community as they age and/or live with disability. As designed, it had an insurance benefit equivalent to about one-third of private long-term care insurance. <br />
<br />
<br />
It didn’t work because it was voluntary. The people for whom the program was designed would have been interested in enrolling. People who currently need long-term care or think they will need it are more likely to purchase limited-benefit coverage. Even with the five-year waiting period required by law, the program would have suffered severe adverse selection. Actuarially the program was not viable. <br />
<br />
<br />
<br />
<h3>
Worst Day of My Career</h3>
<br />
Part of the controversy of the ACA is the matter of mandating participation. Only if everyone participates will the risk be spread sufficiently to support affordable premiums. For the private market the ACA mandated enrollment. For CLASS it was voluntary. In this fundamental way, the federal law took opposite approaches to health insurance coverage and long-term care coverage. Because the CLASS program could not be solvent, the Obama administration notified Congress it would not implement that portion of the ACA. In response, the House Energy & Commerce Committee held a public hearing. A federal official had to appear before the committee to explain why the program wouldn’t work and why the administration was not moving forward. That official was me. I spent 18 months serving as the administrator of the CLASS program. <br />
<br />
<br />
The most difficult thing I have had to do in my career is recommend we not implement the long-term care program that would have helped tens of thousands of people who need long-term assistance and support. My anguish in breaking this news to the stakeholders paled in comparison to their dashed hopes of federal support for this much-needed and hard-fought program. In the wake of our decision to halt implementation, Congress repealed the law.<br />
<br />
<br />
<h3>
Time to Start Over</h3>
<br />
It is time to start over. For stakeholders who focus on long-term care, myself included, the ACA was insufficient. It did not tackle the thorny issues that underlie how we pay for and deliver support to people who need assistance with basic functions such as eating, bathing, dressing, toileting, transferring and maintaining continence. The so-called activities of daily living. These are the elements of long-term care. Most of us will face one or more of these challenges in the future. When we need that type of help, each of us will face the cost. This type of assistance is not covered by Medicare. This type of assistance can be provided either at home or in a congregate setting. This type of assistance is exorbitant. For these multiple reasons, Medicaid is the single largest payer for long-term care. And Medicaid block grants are a threat.<br />
<br />
<br />
The entitlement programs in this country are a tremendous drain on federal and state budgets. Financial and political pressures will continue to thrust us into the maelstrom of reform. As we tackle changes in the Medicaid program, it is essential we begin by looking at the people it serves. The highest costs in the program are in long-term care. The people driving those costs are older people and people with disabilities. The very people being arrested this past month. I know firsthand these vocal advocates welcome the opportunity to talk about reform. But the conversation they seek is not primarily about Medicaid expansion. They are demanding we confront long-term care.<br />
<br />
<br />
<h3>
Necessary Decoupling</h3>
<br />
They are right. In the national campaign to either repair or replace the ACA, it is fundamentally unfair to make sweeping changes to Medicaid long-term care policy without public debate. Let’s give long-term care the forum it deserves. Changing long-term care financing will require laser-like focus on that topic alone. It cannot be adequately reformed by polarized politics reaching for other parts of the law. Long-term care reform is needed. By itself. Alone. Stripped of the distraction of the rest of the law. <br />
<br />
<br />
Until we decouple long-term care financing from ACA reform we will be under constant threat. Not from the activists willing to lay their bodies on the line. But from the threat of losing the program we may need as our bodies themselves fail. The people who understand this most are those people – my friends – in wheelchairs you are watching on the news.<br />
<br />
<br />
<br />
<i>Kathy Greenlee is the Vice President for Aging and Health Policy at the <a href="http://www.practicalbioethics.org/">Center for Practical Bioethics</a>. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016.</i><br />
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Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-17279176355423595682017-07-26T12:34:00.000-07:002017-07-26T12:34:05.576-07:00The Americans with Disabilities Act: Before and After the Fall<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-VrZ7kOjnBlk/WXjuazGEjKI/AAAAAAAABvo/mY0HPs0dEdUHiPiDYnEzsJdnhiCmsRiPwCLcBGAs/s1600/First%2Bstep.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://1.bp.blogspot.com/-VrZ7kOjnBlk/WXjuazGEjKI/AAAAAAAABvo/mY0HPs0dEdUHiPiDYnEzsJdnhiCmsRiPwCLcBGAs/s200/First%2Bstep.jpg" width="150" /></a></div>
<div class="p1">
For the past many years, I have publicly and privately acknowledged the July 26th anniversary of the Americans with Disabilities Act. Public recognition of the anniversary was an important part of my role as the Administrator of the Administration for Community Living (ACL), the federal agency that funds a variety of important programs that support people with disabilities and their families. Two years ago, at the 25th anniversary, I attended community and campus events in Lawrence and highlighted the anniversary in Washington, D.C.<span class="Apple-converted-space"> </span></div>
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One of my favorite aspects of this annual recognition is the company I keep. Many of the individuals who fought at the local, state and federal level for the civil rights of people with disabilities still walk and roll among us. Over the course of my seven years in Washington and during my time in Kansas state government, I have had the pleasure of meeting and collaborating with some of the strongest advocates for people with disabilities in this country. To know the people who created and fought for the ADA is nothing less than an honor. Many of the leaders in this movement are now my friends.</div>
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Blame the Mouse</h3>
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Beginning in August 2016, the benefits of the Americans with Disabilities Act were made real for me. On August 2nd of last year, I fell from a ladder (blame the dead mouse in my attic) and sustained a serious injury to my right leg. I shattered the top of my tibia and fractured my ankle. I was in the acute care hospital for six days and inpatient rehab for 12. From August to the end of October, I was totally non-weight bearing on my right leg. In November and December, I regained my ability to bear weight and walk. In January, I progressed to a cane and was released to drive a car. I still use my cane for longer distances and uneven surfaces.</div>
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I have been living as a person with a disability for the past year. It has been difficult, enlightening, and both encouraging and discouraging. I have new insight and appreciation for orthopedic rehabilitation. I knew it would be hard. The difficulty of rehab is obvious to even casual observers. I didn’t realize it was so scary. I will never, ever, underestimate the difficulty of a transfer for the rest of my life. When I was in the hospital, I characterized a transfer as the intersection of a task and a prayer. It is. Every. Single. Time. It’s just damn scary to swing a broken leg off a bed, stand at walker on one leg, pivot to a wheelchair, or hop to the bathroom. It’s hard to get in and out of a car with an unbendable leg. To board plane I had to hop with a walker, my trusted gait belt strapped around me.<span class="Apple-converted-space"> </span></div>
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What’s the Big Deal?</h3>
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Accessible bathrooms are a big deal. I was released to fly home to Kansas in early September. As my partner and I waited at the gate, I made mental bathroom calculations. I knew it would be extremely difficult for me to use the restroom on the airplane. I avoided drinking anything a few hours before my flight. I positioned myself in the boarding area with one eye on the boarding door and the other on the accessible family restroom across the hall. Then I aimed for the window of time when boarding could commence, my gate attendant would arrive and my final mad dash – roll – to the restroom. Just before that important moment arrived, an airport worker from one of the restaurants sauntered alone into the family restroom. And stayed. As we moved into position at the bathroom door I became increasingly angry. That was not his restroom, it was mine. That space is sacred – to the degree a bathroom can be – because it is reserved for people for whom air travel is very hard. Families, people with attendants, people with disabilities, like me.<span class="Apple-converted-space"> </span></div>
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Accessible hotel rooms are farcical. As my healing progressed, I became better at transferring to a comfortable chair. But, once I’m in the chair, I need to be able to get out. We saw numerous hotel rooms and temporary housing that had modern squishy armless furniture in the living area. An armless living room chair in an accessible room is an oxymoron. Or, just moronic. Take your pick. My favorite non-accessible accessible room was one with plenty of floor space for my wheelchair, but a doorway between the living and bedroom area too narrow to roll through. Fortunately, I needed and often found grab bars near the toilet, a roll under sink, and a shower with grab bars and a shower seat. These items should become more standard. And we should stop selling and installing short toilets.<span class="Apple-converted-space"> </span></div>
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<a href="https://4.bp.blogspot.com/-Xb04KFPoql4/WXjuiIY_9aI/AAAAAAAABvs/5r4aQBnG04MVIErs8ekSfRyxwTsMHv1bwCLcBGAs/s1600/Leaving%2Brehab%2Bhospital.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://4.bp.blogspot.com/-Xb04KFPoql4/WXjuiIY_9aI/AAAAAAAABvs/5r4aQBnG04MVIErs8ekSfRyxwTsMHv1bwCLcBGAs/s200/Leaving%2Brehab%2Bhospital.jpg" width="200" /></a></div>
<h3>
Who’s Disabled?</h3>
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I am amazed by how many people are injured, temporarily disabled or permanently disabled. It is humbling to hang out at rehab, whether inpatient or outpatient. People get hurt badly. Lots of them. Lots of us. And while my experience with physical therapy is overwhelmingly positive, even they don’t have a power door on the bathroom.<span class="Apple-converted-space"> </span></div>
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People who have been hurt don’t wear nametags but they do open doors. Dozens and dozens of times someone has held a door for me and said, “I’ll help. I’ve been there.” People have stopped to help my partner assemble or disassemble my wheelchair. So many strangers have been observant and courteous. And I often wonder how they perceive me. What is the personal and perceived trajectory from injury to temporary to permanent disability? I think it looks like I’ve been injured. Would people react differently if I was obviously disabled? I have come to realize that what people see and what I perceive about myself are complex topics. Not all injuries or disabilities are visible.<span class="Apple-converted-space"> </span></div>
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I was both safe and fearless in my wheelchair. I appreciate it for the liberating device it is, not the confining device able-bodied people perceive it to be. I know so many people who use wheelchairs for mobility. Each of them are teachers to me. As I rolled around rehab, I knew I had role models all around me. Many of my friends and former colleagues use various types of wheelchairs and scooters for assistance. I feel more wheelchair conversant; more like I have enough knowledge to have a capable conversation. During a recent trip to Hawaii, I met with several stakeholders from the disability community and talked with a lunch companion about the progression from a manual to power-assist chair as her MS worsens. I don’t still use a wheelchair but I own one. Moving through that experience was humbling and powerful all at once.</div>
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Happy Anniversary</h3>
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Before the next ADA anniversary comes around, I have more physical and mental work to do. I graduated physical therapy with the understanding they had taken me as far as they could. I now work with a personal trainer to improve the strength of my leg and flexibility of my foot. I hope to continue to improve. But, will I? I hope so. I hope to walk unaided for a distance of several miles. I hope to be strong enough to walk a 5K next Mother’s Day. Can I? How permanent is this injury? It’s severe. It’s lifelong. I will likely need knee replacement in the future.<span class="Apple-converted-space"> </span></div>
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Am I a person with a disability? Or am I injured? The bones have healed and I don’t know the answers yet to these questions. I do know the longer I work on issues that impact the lives of people with disabilities, the more I become part of the community. Regardless of the outcome of my inward reflection, I welcome being part of this civil rights movement. The one that works so hard to improve the lives of all people every day.<span class="Apple-converted-space"> </span></div>
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On July 26th, we should all own and celebrate the Americans with Disabilities Act. For my part this year, I also want to say thank you. Thank you to the leaders who fought for the rights of people with disabilities in this country. You opened doors for me decades before I needed your help.</div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-8766367056362694262017-07-24T10:55:00.000-07:002017-07-24T10:55:17.421-07:00Charlie Gard, Baby Doe and the Wisdom of Bill Bartholome<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-ZkjVPQOAjA0/WXYzkOkF3AI/AAAAAAAABvY/wBOjTXY0ySYt0PRVz_3L8cRk1LgN-ozbgCLcBGAs/s1600/charlie-gard.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="886" data-original-width="960" height="184" src="https://2.bp.blogspot.com/-ZkjVPQOAjA0/WXYzkOkF3AI/AAAAAAAABvY/wBOjTXY0ySYt0PRVz_3L8cRk1LgN-ozbgCLcBGAs/s200/charlie-gard.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The family of Charlie Gard</td></tr>
</tbody></table>
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The Charlie Gard case in the UK has captured international attention regarding the best interest of an 11-month old child with terminal illness whose parents and medical providers in London can’t agree on the best course of treatment and care. <br /><br />The apparently irreconcilable disagreements between the parents and his care providers have extended from weeks into months and, according to the English news source The Telegraph on Wednesday, July 19, the impasse may likely continue. Reportedly, Mr. Justice Francis, the High Court judge managing the case, confirmed that they are “due to hold further hearings later this month,” following the much-awaited American neurologist’s examination of Charlie that took place earlier this week. <br /><br /><b>Should Charlie’s parents be granted permission, allowing him to receive the experimental treatment they seek on his behalf, or is what they seek <i>not</i> in Charlie’s best interest due to the severity of his illness and the uncertainty surrounding the benefit of the experimental treatment? </b><br />These difficult and highly emotional cases are not without precedent. An historical perspective may be helpful in exploring the ethical dimensions of how best to proceed in situations like these. <br /><br />What follows is a reflection by Myra Christopher on the Center for Practical Bioethics’ work in developing <a href="http://www.practicalbioethics.org/files/guidelines/07%20Minors%27%20rights_web2008.pdf">Healthcare Treatment Decision Making for Minors</a>, including infants, that is now more than two decades old.<div>
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<!--StartFragment-->
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">“Don’t
forget about children” was Bill Bartholome’s response when I asked, shortly
before his death in 1999, how we could honor him. Bill was a pediatrician,
bioethicist, member of the Center for Practical Bioethics’ charter board (then
known as the Midwest Bioethics Center), and a nationally known advocate for
children with disabilities. I think of Bill often, and after nearly two decades
still wish that we could have a glass of wine and argue (which we did with
great delight) about interesting cases. <o:p></o:p></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ZK3Crujnc88/VRxB2jY4hYI/AAAAAAAABRI/7Fp3qe94Vlk5bTxHOHqbu0yThrEhehfTwCPcBGAYYCw/s1600/MyraChristopher%2B%2528lo-res%2B2015%2529.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="319" data-original-width="319" height="200" src="https://4.bp.blogspot.com/-ZK3Crujnc88/VRxB2jY4hYI/AAAAAAAABRI/7Fp3qe94Vlk5bTxHOHqbu0yThrEhehfTwCPcBGAYYCw/s200/MyraChristopher%2B%2528lo-res%2B2015%2529.jpeg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Written by Myra Christopher
<!--EndFragment--></td></tr>
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<div class="MsoNormal">
<b><span style="font-size: 12.0pt; line-height: 107%;">A Turning Point in Rights of Children
with Disabilities<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">In light of
Charlie Gard and similar recent cases, I have wondered if Bill’s strong
opinions, shaped when he was a pediatric resident at Johns Hopkins in 1971, would
have changed in recent years. As a pediatrician in training, Bill was named
attending for a newborn with Downs Syndrome whose stomach was not connected to
his bowel. A simple surgical procedure was all it would take for the child, who
came to be known as “Baby Doe” (now “Baby Doe One” or “Baby Doe Hopkins”), to
grow and thrive. The problem was that Baby Doe’s parents (a nurse and a
businessman) did not want a child with disabilities or a “mongoloid” as such
children were often referred to then. With physicians on staff, they decided together
that the baby would not be fed, allowing him to die. Baby Doe was placed in the
back of the nursery and died 17 days later.
<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">Bill and
Norm Fost, a nationally known pediatrician/bioethicist now at the University of
Wisconsin (then chief resident under whom Bill served), thought the decision
was inherently wrong. After going through all the “appropriate” channels to
express their concerns, the two of them became whistle-blowers. In the midst of
their efforts to save him, Baby Doe died. Bill persisted, however, and
ultimately convinced Walter Cronkite, CBS Evening News Anchor, to do an exposé
about the case during primetime television. It was a turning point in the
rights of children with disabilities. Children were no longer seen as property.
Rather, parents were considered custodians or stewards, and the role of society
was also acknowledged. <o:p></o:p></span></div>
<div class="MsoNormal">
<b><span style="font-size: 12.0pt; line-height: 107%;">Dying or Sick?<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">Disenchanted
by what had happened, Bill left medicine and went to Harvard where he earned a
Masters in Theological Studies and became a nationally recognized advocate for
children with disabilities and a pioneer in bioethics. Ultimately, he made his
way home to Kansas City where he chaired the Department of the History and
Philosophy of Medicine at the University of Kansas Medical School and served on
the Center’s charter board.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">Under his
leadership in 1995, the Center, as noted above, published a guideline for </span><a href="http://www.practicalbioethics.org/files/guidelines/07%20Minors%27%20rights_web2008.pdf"><span style="font-size: 12.0pt; line-height: 107%;">Healthcare Treatment Decision Making
for Minors</span></a><span style="font-size: 12.0pt; line-height: 107%;">, which includes
a section on children without capacity, i.e.,” infants, very young children and
minors with cognitive impairment.” Ethics committee chairs, children’s
advocates, bioethicists and pediatric healthcare professionals all joined in
the work to establish the guidelines. As we were working on the document late
one night, Bill said to me, <b>“The problem
here is that some children come unto us dying; others are just sick as sh..,
and we can’t tell one from the other, so, we end up doing terrible things to
innocent dying kids.” <o:p></o:p></b></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">As I
consider the complexity of the Charlie Gard case, I wonder where Bill would place
this baby’s “best interest.” What might be his guidance now? <o:p></o:p></span></div>
<div class="MsoNormal">
<b><span style="font-size: 12.0pt; line-height: 107%;">No Bad Guys<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 107%;">In reviewing
the guidance document today, I am struck by how timely it remains. In
particular, I am taken with this statement:<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-size: 12.0pt; line-height: 107%;">If providers believe that parental refusal of permission for
a specific treatment (or non-treatment) will result in predictable harm to the
health or well-being of the child, they are obligated to participate in
conflict resolution procedures. If the disagreement cannot be resolved, the
healthcare providers have a duty to seek permission for treatment (or
withdrawal of treatment) as provided by the law. <o:p></o:p></span></div>
<span style="font-family: Calibri; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">There are no bad guys in the Charlie Gard case.
Tragically, there are only people who will carry the burden of their
involvement in whatever decision is made all the days of their life. It is my
hope that, when all is said and done, each one can say, “I did what I thought
was best for Charlie” – no matter what is ultimately decided. </span><!--EndFragment--></div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-81090512205249084462017-07-05T11:11:00.000-07:002017-07-05T15:08:18.180-07:00Personalized Medicine: Our Future or Big Data Voodoo?<div class="p1">
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-RZCgkwMjfGM/WV1jQmK7RsI/AAAAAAAABu8/C4ocYI-h2vgO8yGCJZ25ka1-RVE9fz4tgCLcBGAs/s1600/EthirajanSukumar.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="240" data-original-width="160" src="https://3.bp.blogspot.com/-RZCgkwMjfGM/WV1jQmK7RsI/AAAAAAAABu8/C4ocYI-h2vgO8yGCJZ25ka1-RVE9fz4tgCLcBGAs/s1600/EthirajanSukumar.jpg" /></a></td></tr>
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Kumar Ethirajan, MD</div>
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<i>NOTE: Kumar Ethirajan, MD, an oncologist specializing in cancer genetics in the Kansas City area since 1993 and member of the Center for Practical Bioethics’ board of directors, will present this topic as part of the Center’s BIOETHICS MATTERS lecture series on Wednesday, July 19, 7:00 pm, at the Kansas City Public Library Plaza Branch, 4801 Main Street, Kansas City, MO. Bring your perspectives, questions and personal stories. Admission is free. All are welcome.<span class="Apple-converted-space"> </span></i></div>
<div class="p2">
<br /></div>
<div class="p1">
Personalized medicine has the potential to revolutionize medicine. Actually, that’s not true. Personalized medicine IS REVOLUTIONIZING medicine.<span class="Apple-converted-space"> </span></div>
<div class="p2">
<br /></div>
<div class="p1">
Personalized medicine IS our future! Yet, based on a 2013 survey by GfK, a global consumer research firm, just 27% of people have heard of the term personalized medicine and, of those, only 4% understand what the term means.</div>
<div class="p2">
<br /></div>
<div class="p1">
You may have heard personalized medicine referred to as genomic medicine, precision medicine or individualized medicine. Whatever you call it, it’s medicine that uses information about your genes to prevent, diagnose and treat disease. In cancer, it’s about using information about a tumor to discover certain biomarkers or genes and, hopefully, having a drug to treat it. So far, researchers have discovered more than 1800 disease genes, created more than 2,000 genetic tests for human conditions, and have 350 drugs currently in clinical trials.</div>
<div class="p2">
<br /></div>
<div class="p1">
So, this is great, right? Yes. But consider that some 30% of the world’s stored data is generated by the healthcare industry – and that a single patient on average generates 80 megabytes per year! With healthcare data exploding like this, shouldn’t we be thinking about the questions it raises? For example:</div>
<div class="p1">
<span class="s1">• </span>Who owns your genetic information and who should have access to it? Does the abnormal biomarker discovered by a testing company data belong to you or the entity that discovered it?<span class="Apple-converted-space"> </span></div>
<div class="p1">
<span class="s1">• </span>Is your information secure? Can it be used against you? Is de-personalization the answer? Is one layer of de-personalization sufficient?</div>
<div class="p1">
<span class="s1">• </span>And what if you have your genome sequenced and it reveals some abnormality related to a currently incurable or even untreatable disease? Do you want to know?</div>
<div class="p2">
<br /></div>
<div class="p1">
Perhaps the first step in benefiting from this revolution is to educate ourselves. Good ethics and good medicine start with good facts. Learn more about what personalized medicine is. What’s the promise? What’s the hype?<span class="Apple-converted-space"> </span></div>
<div class="p2">
<br /></div>
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<br />
<div class="p1">
A good place to begin is this article in <a href="http://genomemag.com/what-is-personalized-medicine/%22%20%5Cl%20%22.WVPJIGXnuqF">Genome Magazine</a>. A good opportunity to learn more is at a program presented by Kumar Ethirajan, MD, a member of the <a href="http://practicalbioethics.org/">Center for Practical Bioethics’ board of directors</a>, on July 19, 7:00-8:30 pm at the Kansas City Public Library Plaza Branch. Admission is free. Reservations requested.</div>
Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0tag:blogger.com,1999:blog-2263920188140464269.post-56258421699269759222017-06-12T08:28:00.000-07:002017-06-12T08:28:36.088-07:00World Elder Abuse Awareness Day (#WEADD)<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-8OJXM4KFIEA/WJ5CcdTVLyI/AAAAAAAABps/x8Bw8BQ9EZo35Jc8W_AbUjZovxF1jUl9wCPcB/s1600/Greenlee%2B%2528hi-res%2529.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="959" height="200" src="https://1.bp.blogspot.com/-8OJXM4KFIEA/WJ5CcdTVLyI/AAAAAAAABps/x8Bw8BQ9EZo35Jc8W_AbUjZovxF1jUl9wCPcB/s200/Greenlee%2B%2528hi-res%2529.jpeg" width="199" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kathy Greenlee,<br />
Vice President for Aging and Health Policy</td></tr>
</tbody></table>
<h3>
Why I Am Tired and Inspired</h3>
<i>Kathy Greenlee is the Vice President for Aging and Health Policy at the <a href="http://www.practicalbioethics.org/">Center for Practical Bioethics</a>. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016. She will be the keynote speaker at “A Conference on Elder Rights and Protection” in Maui, Hawaii on June 15, 2017, World Elder Abuse Awareness Day.</i><br />
<br />
The United Nations recognizes June 15 as <a href="http://www.practicalbioethics.org/">World Elder Abuse Awareness Day</a>. Started in 2006 by Elizabeth Podnieks of the <a href="http://www.practicalbioethics.org/">International Network for the Prevention of Elder Abuse</a>, the day has become an international opportunity to highlight the global problem of the abuse of older people.<br />
<br />
During my tenure as U.S. Assistant Secretary for Aging, I had the honor of observing “World Day” in venues as exotic as the White House and the United Nations Headquarters in New York City. The problem of abuse of the aged is ubiquitous. It happens in every corner of the world, in every culture. Unfortunately and outrageously, it happens to one out of every 10 older adults in the United States.<br />
<br />
The impact of abuse can be immediate, such as a sudden punch or a sexual assault. It can develop over time, as is the case with older adults who are neglected and allowed to languish, decline and die from the horrible circumstances that accompany the failure to receive care. Elder abuse can be caused by family members who strike out because of stress, anger or greed. It can be perpetrated by strangers who befriend older people on the telephone or through the internet or who come through the front door. Criminals prey on the cognitive decline associated with advancing age and the presence of dementia.<br />
<br />
<h3>
Reasons to Be Tired </h3>
<br />
I became aware of the scourge of elder abuse over 25 years ago when I worked in the Office of the Kansas Attorney General as a young lawyer. In many ways, I have grown up with this issue as a professional. Four aspects of the issue – euphemisms at best and excuses at worst -- continue to motivate and anger me.<br />
<br />
1.<span class="Apple-tab-span" style="white-space: pre;"> </span>I am tired of calling elder abuse <b>“scams.”</b> I have not set out to banish the word. But it’s simply not strong enough. These aren’t scams, they are crimes. Older people aren’t tricked, they are exploited. They aren’t stupid, they are scared. By referring to the targeting of older people as scams, we fail to warn sufficiently. We need to do a better job of telling people: When you get old, people will target you and some will try to hurt you. Be aware, be informed and be careful.<br />
<br />
2.<span class="Apple-tab-span" style="white-space: pre;"> </span>I am tired of <b>ageism</b>. One of the root causes of abuse is the societal devaluing of old people. Older adults are dismissed, talked down to, ridiculed and, most tragically, ignored. Despite the overwhelming presence of older people in society, on an individual level, older people become invisible. We stop seeing them and we lose them. And in the shadows of their isolation, criminals prey.<br />
<br />
3.<span class="Apple-tab-span" style="white-space: pre;"> </span>I am tired of talking about older adults when we should be working with them. I feel strongly that the greatest deficit in the field of aging is the <b>lack of presence of older people</b> themselves. In 1984, I was trained as a volunteer in a domestic violence program. The domestic violence movement in this country was started by formerly battered women. The same can be said about the work against sexual assault. Rape survivors lead the way by bravely speaking out. This is not the case with the work to end elder abuse. The champions in this work are people just like me, professionals who are angered to the point of action and have been for years. We need to provide support and seek opportunities for older people to address the problem of abuse directly and publicly.<br />
<br />
4.<span class="Apple-tab-span" style="white-space: pre;"> </span>I am tired of calling them victims, yet we must hold onto this language. It is a crime to hit, slap, rape, abandon, neglect, drug and steal from older adults. Even and especially when the perpetrator is a member of the family. We need adult protective services, law enforcement, prosecutors and judges to recognize these crimes. We need to stop <b>dismissing these crises as family matters.</b><br />
<br />
<h3>
Reasons to Be Inspired</h3>
<br />
I am ready to call them survivors. The most hopeful part of the work to end elder abuse is starting to emerge. We need to understand resilience. What does it mean to survive abuse in old age? How does “trauma informed care” relate to these issues? How does a person who needs functional support continue to thrive? How do victims set their own course and live the rest of their lives as survivors?<br />
<br />
<a href="http://www.practicalbioethics.org/">World Elder Abuse Awareness Day</a> is a day to reflect, focus and applaud. We need this day. We need to shout and talk and listen. We need to tell each of you in the community, “We have a serious problem.” Older people are not safe. For every year we recognize World Day, each of us has taken another lap toward our own old and older age. On this day, we join the world in the sobering acknowledgement of an international epidemic. I am inspired by this work. Inspired by older people. Inspired by survivors. Inspired by our determination to bring this epidemic out into the open and fight together for it to end.<br />
<br />
<h3>
SUGGESTED LINKS</h3>
<br />
<b>Center for Practical Bioethics</b><br />
<a href="http://www.practicalbioethics.org/">http://www.PracticalBioethics.org</a><br />
<a href="https://www.facebook.com/practicalbioethics/">https://www.facebook.com/practicalbioethics/</a><br />
<a href="https://twitter.com/PracBioethics">https://twitter.com/PracBioethics</a><br />
<br />
<b>National Latin@ Network</b><br />
<a href="https://enblog.nationallatinonetwork.org/a-message-from-the-founder-of-world-elder-abuse-awareness-day/">https://enblog.nationallatinonetwork.org/a-message-from-the-founder-of-world-elder-abuse-awareness-day/</a><br />
<br />
<b>National Center on Elder Abuse</b><br />
<a href="http://www.ncea.acl.gov/">www.ncea.acl.gov</a><br />
<a href="https://www.facebook.com/NationalCenteronElderAbuse/">https://www.facebook.com/NationalCenteronElderAbuse/</a><br />
<a href="https://twitter.com/NCEAatUSC">https://twitter.com/NCEAatUSC</a><br />
<br />
<b>National Committee for the Prevention of Elder Abuse</b><br />
<a href="http://www.preventelderabuse.org/">http://www.preventelderabuse.org</a><br />
<a href="https://www.facebook.com/NCPEA/">https://www.facebook.com/NCPEA/</a><br />
<a href="https://twitter.com/NCPEA">https://twitter.com/NCPEA</a><br />
<br />
<b>National Adult Protective Services Association</b><br />
<a href="http://www.napsa-now.org/">http://www.napsa-now.org</a><br />
<a href="https://www.facebook.com/NAPSANow/">https://www.facebook.com/NAPSANow/</a><br />
<a href="https://twitter.com/NAPSA_NOW">https://twitter.com/NAPSA_NOW</a><br />
<br />
<b>Elder Justice Coalition</b><br />
<a href="http://elderjusticecoalition.com/">http://elderjusticecoalition.com</a><br />
<a href="https://www.facebook.com/elderjustice/">https://www.facebook.com/elderjustice/</a><br />
<a href="https://twitter.com/ElderJustice">https://twitter.com/ElderJustice</a>Practical Bioethicshttp://www.blogger.com/profile/17111101925898726995noreply@blogger.com0