Hospice and Palliative Care

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STUDENT VOICES | CHYNN PRIZE THIRD-PLACE WINNER

By Maia Lauria

I first stumbled upon the issue of palliative care during a particularly hard time in my life. I was twenty years old, and for the first time having to confront the realities of watching a loved one die. Up until then, death had been a decently abstract concept to me. My grandmother had passed away when I was a child, but I was too young to be exposed to any part of the process. My uncle had also passed away when I was a teenager, but due to the suddenness of the death and geographical distance, I did not play a role in the event. I had never attended a funeral, let alone seen a corpse. The case of Monica was very different. For the first time, I became intimately involved in the dying process; and through this, became aware of the workings of the hospice and palliative care system that has become incredibly common throughout the country.

Monica was my mother’s best friend, and a pseudo-mother to my sister and I. In 2007, doctors found a malignant tumor in her colon, leading to multiple surgeries and the administration of rounds of chemotherapy. After some years of remission, the cancer returned in 2011, spreading to more of her internal organs. Once again, different treatments were administered, with waves of optimism and pessimism. Ultimately, in the summer of 2015, after attempting a failed experimental treatment, she was told that there was no more the doctors could do, and that she probably only had a couple more weeks to live. Receiving this news, she opted for in-home hospice care, to be able to spend her last days comfortably with family and friends.

Hospice care is becoming an increasingly common end of life plan in the United States. In the past decade, the number of hospice patients has more than doubled. In 2009, 42 percent of all deaths were under the care of a hospice program.1 According to the National Hospice and Palliative Care Organization, hospice care “ involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support” to help allow the patient to succumb to death in best way possible.2 The phrase they use is that they are shifting the focus from curing to caring. Typically, this involves a family member serving as the primary caregiver, with members of the hospice staff making regular visits and providing 24 hour on-call assistance.2 Central to hospice care is the idea of palliative care, which makes sure the patient is able to die in the most pain-free and dignified manner.

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Ethics & Society Newsfeed: October 6, 2017

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Bioethics/Medical Ethics

Pope denounces technologies that help people change gender
“Pope Francis denounce Thursday how new technologies are making it easier for people to change their genders, saying this ‘utopia of the neutral’ jeopardizes the creation of new life.”

KAST calls for loosening up of law on bioethics
“The Korean Academy of Science and Technology (KAST), a prominent society of top scientists, pushed for greater flexibility in the application of gene correction technology Friday.”

Videos during surgery? Some plastic surgeons go too far, Northwestern researchers say
In recent years, some plastic surgeons have started posting videos of their surgeries on social media in hopes of informing and attracting new patients. But in some cases, their antics seem designed more for entertainment than education, raising ethical questions, according to a new paper from Northwestern Medicine researchers published in the journal Plastic and Reconstructive Surgery.”

Nevada law says chief medical officer must advise on executions despite ethical clash
“Nevada’s Chief Medical Officer Dr. John DiMuro’s role in helping choose the lethal drugs for an upcoming execution could put him in an ethical quandary as an anesthesiologist committed to preserving life.”

Are radiologists getting enough medical ethics training?
“Radiologists spend a lot of years in medical school and in residency, but they still aren’t getting enough medical ethics training, according to a recent analysis published in the American Journal of Roentgenology.”

Politics

Editorial: SF’s Ethics Board fails to tackle money in politics
“The San Francisco Ethics Commission had the opportunity to pass a commonsense measure to curtail money in politics. It failed. The ordinance would have banned the practice of allowing political donors to contribute to the charitable causes of favored candidates when those donors have a contract up for approval or a pending land-use decision in front of city officials.”

How to Get Away With Murder, or at Least Corruption, in Brazil
“No less than 40 percent of Brazil’s 594 lawmakers face formal investigations before the Supreme Court, the tribunal’s figures show. Forty-seven deputies and eight senators are currently defendants in criminal trials. Just two have lost their jobs over corruption charges.”

Cyber Sedition: How the Alt-Right Is Challenging Free Speech on the Internet
“Though the alt-right’s internet presence poses unprecedented challenges to free speech, allowing private actors to become the gatekeepers of acceptable speech online places the fundamental idea of free expression at risk.”

Veterans Agency Seeks to Scrap Ethics Law on For-Profit Colleges
“The Department of Veterans Affairs is pushing to suspend a 50-year-old ethics law that prevents employees from receiving money or owning a stake in for-profit colleges that pocket hundreds of millions of dollars in tuition paid through the G.I. Bill of Rights.”

The Trump officials caught splurging on luxury travel
“Tom Price’s pricey private flights unleashed a number of stories about other Trump administration officials flying charter, military or private on taxpayers’ dime.”

Menendez trial: Prosecutors tie political donations to Menendez meeting
“U.S. Sen. Robert Menendez requested a meeting with a high-ranking State Department official to talk about port security issues in the Dominican Republic on the same day that Florida eye doctor Salomon Melgen agreed to donate $60,000 to help Menendez’s re-election and to fight a recall effort against him, prosecutors said Thursday. Melgen owned a 50 percent stake in a company, ICSSI, that was urging the Dominican government to honor a port security screening contract that could potentially be worth hundreds of millions of dollars, according to prosecutors.”

Business Ethics

Why values and ethics are good for business
“It is a privilege to be a trusted and integral part of a person’s recovery from addiction. So, I am deeply troubled when I see facilities cutting corners and bending the rules to increase revenue or profit. These actions are not only short-sighted from a business standpoint, but also highly unethical and potentially dangerous to those who have entrusted us to help them recover.

Middle managers may turn to unethical behavior to face unrealistic expectations
“While unethical behavior in organizations is often portrayed as flowing down from top management, or creeping up from low-level positions, a team of researchers suggest that middle management also can play a key role in promoting wide-spread unethical behavior among their subordinates.”

The Morality of Charles Koch
“For those who regard capitalism and Christianity as mortal enemies, few villains loom as large as Charles Koch, whose name in some quarters has become a synonym for a system based on greed and exploitation. By his own admission, the libertarian-leaning billionaire is not religious. So why would such a man choose the Catholic University of America for a $10 million gift to help relaunch its business school?”

Educational/Academic Ethics

Harvard Business School earns an incomplete in ethics
“Some argue that you can’t teach ethics to a bunch of 26-year-olds. But you can certainly lead by example. Alas, the recent example set by the leadership of HBS shows a blatant disregard for even the simplest of ethical considerations.”

Technology Ethics

DeepMind announces ethics group to focus on problems of AI
“Deepmind, Google’s London-based AI research sibling, has opened a new unit focused on the ethical and societal questions raised by artificial intelligence.”

Who should die when a driverless car crashes? Q&A ponders the future
“Should a driverless car swerve to miss a child, knowing it will kill its passenger? Or should it maintain its path and end a younger life? It’s deeply troubling ethical dilemmas like these that Sandra Peter believes will hinder the mass uptake of driverless cars, possibly beyond our lifetimes.”

Ethics of Internet research trigger scrutiny
A research paper that used publicly available data about people’s addresses and likely movements to unmask the anonymous graffiti artist Banksy “highlights growing concerns about the potential hazards of research that uses public data.”

Digital Technology May Start a New Scientific revolution in Social Research
“The collection of “big data” and the ability to do experiments using the internet, may be the start of a scientific revolution in social research. But there are important ethical considerations that also need to be factored in.”

Software engineers must think deeply about ethics
“I believe technology is immensely constructive and, like any power, if wielded correctly, can in fact make the world a better place. I still believe most jobs will be automated, and, in the long run, humanity will be better off from it. But great power must be accompanied by great responsibility, which remains largely absent in Silicon Valley.”

 

 

Fordham University’s Dr. Celia Fisher Discusses What the Revised Common Rule Means for Informed Consent in Medical Ethics Advisor

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The Federal Policy for the Protection of Human Subjects, or the Common Rule was revised earlier this year and is set to be effective on January 19th, 2018. The Common Rule was created in 1991 to “better protect human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.” Departments and agencies including, but not limited to, the Department of Homeland Security, the Department of Health and Human Services and the National Science Foundation made these revisions in an effort to “modernize, simplify, and enhance the current system of oversight.”

In this year’s October issue of Medical Ethics Advisor, Dr. Celia Fisher, Director of Fordham University’s Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute, discusses two significant ways the revised Common Rule will change informed consent practices in research, and critical ethical questions to consider about these changes.

According to Dr. Fisher, the first change, stating that investigators are permitted to obtain broad consent from participants for future use of identifiable biospecimens by the original investigator or other investigators, “increases the ability of scientists to combine large data sets to explore important medical questions.” However, she says, “it is unclear whether hacking or the use of the identifiable information…will pose a social or economic risk to participants.” Dr. Fisher continues that it could be additionally problematic if “identifiable data is used to inform policies that promote medical discrimination of already vulnerable groups” without the research participants understanding how their data will be used in the future.

The second revision of the Common Rule that will impact informed consent practices states that investigators are required to give prospective participants a brief summary of “key points” that a reasonable person would want to know to make an informed choice. Dr. Fisher notes that this revision “can be an advantage over the current risk-averse legal language in informed consent materials,” but the revision does not state who will be deciding what the key points are which could be potentially problematic considering participants, investigators and IRB members may have different ideas of what “important information” is.

To read the full article and October’s Issue of Medical Ethics Advisor, please visit their website here. To subscribe to the journal, please visit AHC Media.

Dr. Celia Fisher is the Mary Ward Doty University Chair in Ethics at Fordham University, a professor of Psychology and the director of Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute. In addition to chairing the 2002 revision of the American Psychological Association’s Ethics Code, Fisher’s Decoding the Ethics Code: A Practical Guide for Psychologists is now in its fourth edition from Sage Publications.  Please visit her webpage for more information about her work, as well as the Fordham University Center for Ethics Education Research page.

Ethics & Society Newsfeed: September 22, 2017

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Politics

Donald Trump’s Lies and Obstruction Will End His Presidency, Ex-Ethics Chief Says
“A former White House ethics chief says that Donald Trump would likely be impeached if it is proven he sought to obstruct justice by firing ex-FBI Director James Comey in hopes of ending his investigation into Russian meddling in the 2016 election.”

Public servants hiring spouses, mothers, brothers, lovers: Is it ethical?
“Mississippi’s public servants frequently seek advice from the state Ethics Commission.”

Illegal Strikes and Political Obligation – What Reasons Do We Have To Obey The Law?
“I do not intend to address the moral and economic considerations involved in the question of the amount that a fair society should pay to its public sector workers. Rather, I shall be interested in the nature of the reasons that we may have to obey laws we disagree with, and the implications that our answer to this question may have for whether we should support illegal strikes of this sort.”

To Wipe Out Corruption, Look to Philadelphia
“The city went almost a decade without a single corruption scandal. What’s its secret?”

Bioethics/Medical Ethics and Research Ethics

Take stock of research ethics in human genome editing
“Progress in the use of CRISPR–Cas9 for human germline editing highlights some pressing ethical considerations for research on embryos.”

An Experiment Gives Cash Aid To The Poor. Is That Ethical?
“Is it moral for experimenters to bestow a benefit on one group of people and not another? And what are the risks of unintended negative consequences — creating lasting income inequalities between villages, for instance, or even fueling tensions between the residents?”

Artificial Human Embryos Are Coming, and No One Knows How to Handle Them
“Stem cells can be coaxed to self-assemble into structures resembling human embryos.”

Bioethics expert says ‘de-valuing’ human beings is 21st century malady
“Dr. John Haas, President of the National Catholic Bioethics Center, says that beneath specific conundrums that arise in the field of bioethics these days lies a deeper challenge that the Catholic Church is uniquely equipped to address: A ‘de-valuing’ of human beings, which turns the weak and vulnerable into commodities to be exploited by the wealthy and powerful.”

How Much is Your Health Worth to You?
“Exorbitant drug pricing and bad experimental medicine result from putting health care up for sale.”

Business Ethics

We Shouldn’t Always Need a “Business Case” to Do the Right Thing
Corporations should continue to increase and advocate for ethical initiatives. However, the reasoning for supporting these projects should not focus solely on business benefits.

How Much Do A Company’s Ethics Matter In The Modern Professional Climate?
“A company’s ethics and corporate social responsibility matter more today than they did a few decades ago. Workers place a higher emphasis on the values of their employers, and have access to more information than ever before. If you want your company to remain competitive in the hunt for the best candidates in your field, spend some time defining, perfecting, and promoting your company’s ethical behavior.”

Business ethics: moving beyond just compliance
“Financial professionals have become used to compliance requirements placed upon them by regulators including aspects such as treating customers fairly, anti-money laundering, data protection and anti-bribery policies, to name a few. Professional bodies also have member codes of conduct. However, following historical financial scandals, trust in the financial profession remains low.”

The ethics of advertising hate speech
“ASU marketing professor shares insights on Facebook, Google advertising practices.”

Technology and Ethics

AI Research Is In Desperate Need Of An Ethical Watchdog
An updated set of guidelines and regulations is needed to keep pace with the advancement of artificial intelligence and prevent good-intentioned researchers from causing more social ills than they fix.

What Germany’s Document on Autonomous Driving Says about the Ethics of Automotive Tech
“A new document put together by Germany’s Federal Ministry of Transport and Digital Infrastructure aims to preemptively address many of the practical and ethical concerns that autonomous driving will present.”

The Analytics Challenge: Timing, Talent, Value and Ethics
“Healthcare analytics is evolving to a greater focus on analyzing data using prescriptive analytics and providing proactive solutions.”

What Happens When Lyft Redesigns A Street
“Ride sharing is here to stay, and autonomous vehicles are imminent. But the implications for cities are less than clear… How should our aging infrastructure adapt to these changes–and who should be shaping (and funding) it?”

Educational/Academic Ethics

Academic Ethics: Is ‘Diversity’ the Best Reason for Affirmative Action?
“Does racial and ethnic diversity really enhance the educational experience?”

The ethics of free speech in the Trump era
“Universities, as influential institutions, should be allowed to make a moral distinction as to when free speech devolves into hate speech and when pro-Trump political stances may bear negative consequences in the lives of their campus community members.”

Miscellaneous Ethics and Society

Yes, Ethics Still Matter in an Emergency
“Storm victims aren’t breaking the law by “looting” needed food. But they should try to pay later.”

Why museums need their own ethics departments
“While museums may have codes of ethics that aim (with varying degrees of success) to regulate professional conduct, they lack internal institutional support for sustained research into these pressing and fundamental issues. Adopting the ethics of art as a core area of research should be embraced as part of the museum mission.”

“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene. If she cannot help the choices she makes, why could my dad or my mother’s other family not make the choices for her? Why could nobody make her take medication? I eventually learned that it was because my mother was sick, but “not sick enough.” The court ruled in favor of autonomy and said that my mother still had the right to make her own medical decisions. According to them she was functional and was not posing an immediate danger to herself or others. I understand autonomy. Autonomy is defined as “a principle in which a person should respect the rights of other individuals to freely determine their own choices and decisions” (Jonas). I understand how important free will and the ability to make choices about your own body are. It is hard for me, however, to understand how you can continue to honor a person’s right to make their own decisions, when every decision they make is only hurting them. It is hard to sit there, as a loved one, and not want to just make them take the medication they need to get better, or force them participate in that research study that just might help.

Continue reading ““She Can’t Help The Choices She Makes””

Fordham University’s Dr. Celia Fisher Awarded APA Ethics Educator Award for Outstanding Contributions to Ethics Education

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Fordham University’s Center for Ethics Education Director Dr. Celia Fisher is the 2017 recipient of the ninth annual American Psychological Association (APA) Ethics Committee Ethics Educator Award for her outstanding contributions to ethics education at the national level! Dr. Fisher was presented with the award earlier this month by APA Ethics Committee Chair Patricia L. Watson, PhD, at the 125th APA Annual Convention in Washington, D.C.

Psychologists are awarded the APA Ethics Committee Ethics Educator Award for demonstrating outstanding and innovative contributions to the profession of psychology through ethics education activities. These ethics education activities include presentations, workshops, publications and more.

Dr. Fisher is the Mary Ward Doty University Chair in Ethics at Fordham University, a professor of Psychology and the director of Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute. In addition to chairing the 2002 revision of the American Psychological Association’s Ethics Code, Fisher’s Decoding the Ethics Code: A Practical Guide for Psychologists is now in its fourth edition from Sage Publications. Dr. Fisher’s federally funded research programs focus on ethical issues and well-being of vulnerable populations, including ethnic minority youth and families, active drug users, college students at risk for drinking problems, LGBT youth and adults with impaired consent capacity.

Please visit Dr. Celia Fisher’s webpage for more information about her work, as well as the Fordham University Center for Ethics Education Research page.

Ethics & Society Newsfeed: August 18, 2017

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Politics

Neil Gorsuch Speech at Trump Hotel Raises Ethical Questions
“Justice Neil M. Gorsuch, President Trump’s Supreme Court appointee, is scheduled to address a conservative group at the Trump International Hotel in Washington next month, less than two weeks before the court is set to hear arguments on Mr. Trump’s travel ban.”

Trump’s Washington DC hotel turns $2m profit amid ethics concerns
“Donald Trump’s company is said to have taken home nearly $2m in profits this year at its extravagant hotel in Washington, DC – amid ethics concerns stemming from the President’s refusal to fully divest from his businesses while he is in office.”

3 representatives want to officially censure Trump after Charlottesville
“In response to Donald Trump’s controversial remarks about the violence in Charlottesville, Virginia, three Democrats want to censure the president.”

Does Trump’s Slippery Slope Argument About Confederate Statues Have Merit?
“NPR’s Robert Siegal talks with Ilya Somin, a professor of George Mason University, about President Trump’s warning that pulling down Confederate statues may lead to a slippery slope in which monuments to the Founding Fathers are torn down.”

Bioethics/Medical Ethics and Research Ethics

Vaccination: Costly clash between autonomy, public health
Bioethical principles in conflict with medical exemptions to vaccinations

CRISPR and the Ethics of Human Embryo Research
“Although scientists in China and the United Kingdom have already used gene editing on human embryos, the announcement that the research is now being done in the United States makes a U.S. policy response all the more urgent.”

Exclusive: Inside The Lab Where Scientists Are Editing DNA In Human Embryos
“[Critics] fear editing DNA in human embryos is unsafe, unnecessary and could open the door to “designer babies” and possibly someday to genetically enhanced people who are considered superior by society.”

The Ethics Issue Blocking Organ Transplant Research
“The ethics of so-called donor-intervention research are incredibly fraught. How do you get informed consent and from whom? The dead donor? The live recipient—or possibly dozens of live recipients getting tissues or organs from a single donor, fanned out across the country at different hospitals each with their own ethics review boards? All this would unfold against intense time pressure. Every minute of delay is a minute in which the organ is deteriorating.”

NSF reiterates policy on teaching good research habits despite its limitations
“The National Science Foundation (NSF) in Arlington, Virginia, has decided to double down on its implementation of a congressionally mandated policy aimed at reducing research misconduct among NSF-funded scientists, despite a new report that notes problems with the agency’s approach.”

What do revised U.S. rules mean for human research?
“Following a contentious 5½-year process, the U.S. Department of Health and Human Services (HHS) Office for Human Research Protections (OHRP) released a revised “Common Rule,” which governs federally funded research involving human subjects (1). The updated rule includes a number of welcome changes for U.S. institutions and researchers, and their scientific collaborators abroad.”

Technology and Ethics

The Ethics of Doxing Nazis on Social Media
“The important question is: does any of this help?”

The importance of building ethics into artificial intelligence
“Understand ethical AI and its role in the future of work, recruit talent that understands AI – and its power to address workplace challenges, develop AI that runs on data reflecting the diversity of its users…”

The Ethics of Artificial Intelligence
“Establish an ethics committee, pursue innovation safely, create a solid foundation, choose autonomy, not regulation…”

“We have made more progress in artificial intelligence (AI) in the last three years than in the preceding three decades. AI is transforming from handy little applications that make our lives easier (from Alexa and Siri to Uber and Netflix) to something more powerful…”


Philosophy and Business Ethics

Are corporations becoming the new arbiters of public morality?
“After Charlottesville, CEOs have become our public conscience. Here’s what that says about capitalism in America.”

How to be Ethical in the Workplace, According to 3 Philosophers
“Whether you’re a journalist, banker, salesman, chef—whatever your career path may be—you’re obviously going to want to be a good professional. A key factor in being “good” in any profession is to be ethical…”