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.
For LGBT resources, please visit RELAY (Research and Education for LGBT and Allied Youth). RELAY is a project of Fordham University’s Center for Ethics Education which looks to advance the conversation about health for lesbian, gay, bisexual, and especially trans youth. Please also visit the resource page for creating an LGBTQ-inclusive classroom.
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.”
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.”
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.”
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.”
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.
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?”
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.”
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.”
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.”
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.”
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.
There had never once been a public opinion poll done in El Salvador until Ignacio Martín-Baró, a Jesuit, set out as the only doctoral-level psychologist in the country to measure the opinion of the people in the 1980s. He knew this would be difficult. He had studied at the University of Chicago, and he was certain that he would need to practice very differently than how he had been trained. But he had still been unprepared for just how difficult it would be.
Much of Martín-Baró’s early conclusions were made on the fact that very few people would speak to him. Only 40% percent of the rich felt safe enough to speak their opinion. And the poor? Less than 20% of the poor would do the speak to him. Less than 20% would speak to him about their lives, what they thought of the government, or anything that could get back to someone who could hurt them.
In his case, silence stood for more than an inconvenience to answer a pollster. It stood for more than a passive distrust of someone collecting data. In his case, silence told a story of gripping fear, of generations of pain, of mothers mourning children slain by an oppressive and violent government.
Silence says a lot, and it’s important that researchers take that silence into account.
I do not present my essay from El Salvador, though, much less an El Salvador in the throes of civil war like my introduction remembers. Instead, I present my essay from the United States. Martín-Baró was attuned to the differences between the countries. He remarked to an American colleague once that, “In your country, it’s publish or perish. In mine, it’s publish and perish.” Indeed, Martín-Baró would later be killed, one of eight martyrs, in November of 1989.
I do not propose that he was mistaken. He was an American-trained researcher after all; he would know the dynamics between the countries. There is far more protection in the United States, particularly for the researchers today, than there was in Martín-Baró’s time and region. However, I do want to turn my gaze to those who cannot freely speak their mind in the United States, and posit that researchers can (and, I argue, should) take on their behalf, if they are to act in the heroic way that Martín-Baró did.
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.”
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?”
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 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.”
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?”
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.”
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.”
On March 1, 2017. Public Responsibility in Medicine and Research (PRIM&R) hosted a workshop entitled, “Ethics of Data Access, Use, and Sharing for Human Subjects Research Workshop.” Researchers, institutional representatives, ethicists, policy makers and many others examined new scientific opportunities and important ethical challenges that arise from collecting, accessing, sharing and using individual’s data for research.
The workshop considered four complex ethical areas: 1) the value of research with shared dates; 2) individuals’ rights and expectations with regards to their data; 3) consent, authorization, and data stewardship; and 4) responsibility for the ethical oversight of research involving data access, use, and sharing.
In Panel II, “Conceptualizing an individual’s rights, interests, and expectations with regard to their health and other data,” Dr. Celia Fisher, Director of Fordham University’s Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute, focused on concerns related to socially marginalized populations and group harms that emerge in the collection and use of large data sets. Dr. Fisher stressed the importance of “fostering public transparency and stakeholder participation in the risk-benefit analysis of how big data are used.”
To watch Dr. Fisher’s presentation, please click play on the embedded video below. For the entire workshop recording, please visit PRIM&R’s website here.