Hot Topics: Justice

Blog Posts (20)

February 17, 2017

BioethicsTV: Mass Casualties & Triage

by Craig Klugman, Ph.D.

Chicago Med (Season 2; Episode 14). Over the last few years I have been working in the area of crisis standards of care.…

February 15, 2017

Beyond the Destination LVAD

There are many forms of life sustaining treatment available to patients thanks to advances in medical technology. When a person’s physiology weakens or fails, devices may be attached or implanted to take over for organs that can no longer bear the workload of processing, moving, or taking in the elements needed to keep a body alive. Conceptually, this is appealing to a society that is as averse to death as are those of us here in the US. But we still struggle to accommodate the range of needs that crop up when function is compromised. As an ethicist, the general trend in my work suggests that the more advanced the technology, the more questions it raises when it comes time to talk about halting the mechanical support. Among the more advanced tools for sustaining physiological function is the Left Ventricular Assist Device, or LVAD, which maintains the circulatory function for persons with severe heart failure.

There is little doubt that individuals who are eligible for the device can experience remarkable quality of life gains whether they move on to receive a heart transplant or receive the implant as a destination treatment. Recipients of LVADs can typically return to their daily activities, and enjoy a level of independence not previously possible for persons with otherwise lethal heart conditions. However, these patients are not just like everyone else when complications arise. Decisions about how best to manage long term care for persons who have LVADs can be unexpectedly complex, most notably when the patient lives outside a major metropolitan city center. In particular, securing services when such patients suffer non-cardiac health complications after having the device implanted can be difficult. Consider a patient who is stable with a destination LVAD who develops end stage renal disease and requires hemodialysis. Outpatient dialysis centers can be fearful about safely managing the ongoing dialysis treatment for a patient when they do not have experience with ventricular assist devices. The same may apply to residential care centers when a patient needs a period of rehab for an injury unrelated to the heart failure diagnosis. Perhaps the most challenging circumstance involving resources for LVAD patients who experience age related cognitive decline and need nursing home level care due to confusion, impulsivity, and routine self-care deficits. There are no clear restorative goals, but the need for custodial care can quickly exceed what was once possible at home, but the LVAD is usually unfamiliar to small town nursing homes and can be a barrier to securing long term residential care.

This issue raises an important justice question for LVAD candidates. Should consent for LVADS, when known to be destination devices, include information about the limitations in assuring other types of services? If so, how do we assure that this information is delivered in a way that does not discriminate against patients from more remote areas while favoring those who live near facilities that routinely care for LVAD patients? 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

February 13, 2017

Fallout: From Healthcare Equality to Existential Threat

by Jenji Cassandra Learn

This is the second in a series of personal articles about living as a trans-woman facing insurance denial, discrimination, and medical mistreatment in the current political environment.

February 6, 2017

A message of hope for inclusivity and equality

For many US citizens, as well as people around the world, the last few months have been difficult and disappointing given the results of the US presidential election. As a feminist bioethicist, I am particularly concerned about how the Trump administration will treat vulnerable and oppressed groups, such as women, individuals in the LGBTQ community, people of color, individuals with disabilities, Muslims and other religious minorities in the US, and poor individuals. I am also concerned that the Trump administration will erode people’s access to healthcare and that this will disproportionately affect these vulnerable and oppressed groups. Already, we have seen that one of Trump’s first actions is to start the process of repealing the Affordable Care Act.

It is easy to be disheartened during these challenging times, but I recently attended two events that gave me hope. First, on Friday, January 20, I attended and co-organized the fifth annual Capital District Feminist Studies Consortium Conference which was held at the Albany College of Pharmacy and Health Sciences. When we chose the date for this conference in the summer of 2016, we didn’t realize that we had scheduled the conference for Inauguration Day. Had the presidential election turned out differently, this may have affected our turnout, but as it stands, we had approximately 80 people in attendance, which is great for a local conference. A feminist conference was the perfect place to be on this Inauguration Day. In order to address some of Trump’s antifeminist and other biased comments and actions, the organizers put together an invited panel titled "Feminist Work in Non-Feminist Surroundings: Survival in Challenging Times." I participated in this panel to discuss why I had created the Capital District Feminist Studies Consortium in the first place and why its existence is so important moving forward. The other panelists – a lawyer, an artist, and a historian – also spoke about the need for women in public spaces and for feminist resistance.

The following day, Saturday, January 21, I attended the Women’s March in New York City, which also gave me hope. Though tired from a full day of participating in and moderating the conference, I was invigorated by the large (over 400,000 people) and supportive crowds (filling the streets of New York City According to estimates. Furthermore, there were sister marches in all 50 states and around the world. Approximately 5 million people marched in around 670 marches, making this the world’s largest demonstration. That so many people came together surrounding a message of inclusivity and equality is incredible and powerful.

Inspired by these two events, I will continue moving forward with hope, which will strengthen and support me as I continue to work, both in my professional and personal life, towards justice for all people, and particularly those who are vulnerable and oppressed. I hope you will join me.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

 

January 30, 2017

Bioethics and the Problem of Silent Neutrality in the age of Trump

by Craig Klugman, Ph.D.

One of the most contentious of all issues in bioethics has been whether as a profession, we should take a stand against issues.…

January 26, 2017

Two Wrongs Do Not Make A Right

by Craig Klugman, Ph.D.

A draft of a new executive order that would re-open CIA black site prisons (facilities outside the United States where more torturous forms of interrogation are not prohibited) and restart the use of enhanced interrogation techniques (which many consider to be torture) was made public on Wednesday.…

January 24, 2017

Can Science Survive in a Communications Blackout: Restricting Speech Violates Scientific Ethics

by Craig Klugman, Ph.D.

That good ethics begins with good facts is an oft-heard mantra and was my first lesson when I began conducting clinical ethics consults 20 years ago.…

January 17, 2017

The Future of Health Insurance May Look A Lot Like Our Past

by Craig Klugman, Ph.D.

This week marks the transition of power from President Obama to President-elect Trump. One issue that has been high on Trump’s list of policy changes is a repeal and replace of the Affordable Care Act (a.k.a.…

January 11, 2017

The Cost of Being Whole: Double-Standards and Discrimination in Trans Healthcare

by Jenji C. Learn, BA

How much are your genitals worth to you? Your beard? Your breasts?

What’s a reasonable price for them?…

January 9, 2017

Crossing the Line: When Doctors’ Beliefs Endanger Patients’ Autonomy and Health

by Craig M. Klugman, Ph.D.

In 2016 the Illinois legislature passed and Governor Bruce Rauner signed into law Public Act 099-690 (SB 1564), an amendment to the Health Care Right of Conscience Act.…

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Published Articles (2)

American Journal of Bioethics: Volume 16 Issue 11 - Nov 2016

The Ethics of Organ Donor Registration Policies: Nudges and Respect for Autonomy Douglas MacKay & Alexandra Robinson

American Journal of Bioethics: Volume 16 Issue 10 - Oct 2016

Governance of Transnational Global Health Research Consortia and Health Equity Bridget Pratt & Adnan A. Hyder

News (9)

February 3, 2017 9:00 am

On 22 April, empiricists around the country will march for science (Science)

Some fear a demonstration led by researchers might only serve to paint scientists as an interest group, further politicizing scientific issues. And at least one veteran science lobbyist has urged organizers to make sure it’s a march for science, not scientists.

January 30, 2017 9:00 am

Journals invite too few women to referee (Nature)

Using a large data set that includes the genders and ages of authors and reviewers from 2012 to 2015 for the journals of the American Geophysical Union (AGU), we show that women were used less as reviewers than expected (on the basis of their proportion of membership of the society and as published authors in AGU journals). The bias is a result of authors and editors, especially male ones, suggesting women as reviewers less often, and a slightly higher decline rate among women in each age group when asked.

January 20, 2017 9:00 am

New Common Rule on the Federal Policy for the Protection of Human Subjects (Federal Register)

The departments and agencies listed in this document announce revisions to modernize, strengthen, and make more effective the Federal Policy for the Protection of Human Subjects that was originally promulgated as a Common Rule in 1991. This final rule is intended to better protect human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.

December 14, 2016 9:00 am

Endgame in Aleppo, the most decisive battle yet in Syria’s war (Washington Post)

Aleppo would go down in history as one of the great failures of the international community to halt human rights abuses.

November 23, 2016 9:00 am

Young African women are especially vulnerable to HIV/AIDS (Science)

91% of new infections in the 15- to 19-year-old group were in adolescent girls.

November 22, 2016 9:00 am

Missouri appeals court rules frozen pre-embryos are marital property (Jurist)

Any frozen pre-embryos, fertilized eggs that are not implanted in the uterus, are legally classified as marital property

November 10, 2016 10:52 am

U.S. watchdog told Medicare, Medicaid that EpiPen was misclassified in 2009: senator (Reuters)

The internal watchdog at the U.S. Department of Health and Human Services warned the office tasked with administering federal health insurance programs that Mylan NV’s EpiPen was improperly classified as a generic drug in 2009, Senator Charles Grassley said on Tuesday.

November 2, 2016 8:00 am

Male Birth Control Injections Found Effective, But Study Cut Short Due to Side-Effects (US News)

New research published Thursday in The Journal of Clinical Endocrinology & Metabolismshows hormonal birth control injections for men could be effective. But don’t expect to see them on the market anytime soon. The study was cut short due to side effects including depression, mood changes and libido issues – in short, side effects similar to those experienced by women who take hormone-based birth control.

October 3, 2016 8:00 am

Furor Over Drug Prices Puts Patient Advocacy Groups in Bind (NY Times)

Public anger over the cost of drugs has burned hot for a year, coursing through social media, popping up on the presidential campaign, and erupting in a series of congressional hearings, including one last week over the rising price of the allergy treatment EpiPen.