Tag: health literacy

Bioethics Blogs

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Public Members Needed

The Research Involving Human Subjects Committee (RIHSC) FDA’s IRB, is looking for up to three individuals from the community to serve as public members on the committee.

 

FDA is committed to safeguarding the rights and welfare of all human beings who participate as subjects in research. The RIHSC reviews all research involving human subjects conducted, supported, or funded, in whole or in part, by FDA, to ensure that the research complies with applicable laws and ethical research standards.

 

What kind of members serve on an IRB?

 

Ideally, IRBs are made up of members from diverse backgrounds.  Diversity assures a complete and thorough review of the research activities from a variety of perspectives.

 

We are seeking community members with different kinds of backgrounds than our current members. Some examples would be educators, members of the clergy, laborers, and previous government employees who have not worked in public health agencies.

 

RIHSC membership currently has scientists, health care professionals, social scientists, and regulatory counsel.

 

What are the qualifications RIHSC is seeking in a Public Member?

 

Although not required, it may be beneficial to have experience in:

 

  • Health communication, health literacy, or plain language
  • Consumer or patient advocacy
  • Ethical analysis or

 

Community members who volunteer to be a public member for RIHSC may not be affiliated with FDA or be an immediate family member of a person affiliated with FDA. 

 

What are the responsibilities of a public member of RIHSC?

 

The public members on a rotating basis will be asked to:

 

  • Prepare for monthly committee meetings
  • Attend monthly committee meetings (typically meets for 2-3 hours on the first Wednesday of the month, during business hours)
  • Attend meetings
  • Add to the discussion and vote on the proposed study based on certain criteria, such as if the risk to subjects is reasonable, minimized, and fully disclosed to subjects.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

APHA Ethics Section Interview with Dr. Celia B. Fisher on Conversion Therapy Report

The following is an interview with the American Public Health Association’s Ethics Section with Fordham University Center for Ethics Education Director Dr. Celia B. Fisher who served as an advisor for a White House panel on conversion therapy.

In April of this year, President Barack Obama announced his support for state efforts to pass Leelah’s laws. Such laws seek to ban conversion therapy, a practice which claims to change individuals with LGBTQ identities to a heterosexual identity and is named for an American transgender girl who committed suicide after undergoing conversion therapy. Celia B. Fisher is the Marie Ward Doty University Chair in Ethics and Director of the Center for Ethics Education at Fordham University and an Ethics Section member. She served as an advisor for a White House report released last fall, Ending Conversion Therapy: Supporting and Affirming LGBTQ Youth.

She joins us this month for a Q & A, sharing her insights into one area of contemporary public health ethics in practice:

Q: What are the highlights Ethics Section members should know about the report Ending Conversion Therapy?

A: The report was commissioned by the Substance Abuse and Mental Health Services Administration (SAMHSA) with the assistance of the American Psychological Association (APA) under the auspices of White House interest. The goal of the SAMHSA-APA committee was to investigate the empirical case supporting, and not supporting, the use of conversion therapy. And so, a committee was brought together, the majority of members were researchers in the field of child development, pediatric physicians and mental health practitioners, or those who study gender identity formation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Top of the Heap: Helen Verran by Hannah Gibson

For this installment of the Top of the Heap series, I spoke with Helen Verran, a historian and philosopher of science who is Adjunct Professor at Charles Darwin University in Australia as well as holding a position at the Norwegian University of the Arctic.

Helen Verran

bodyipadA display of a story about computer application that was never built – the Touch Pad Body. In 2016 it exists only as electronic seed code in a few computers. Apart from that it has life in two stories that have been told about it: a pamphlet of four pages (see PDF here; first page at right) and an academic paper (Christie and Verran, 2014). The experience of collectively imagining the Touch Pad Body as an entity, and imbuing it with what might be called ‘life in potentia’, was an element in an inquiry with the project name “East Arnhem Client Education and Health Interpreting”. That inquiry conducted as contract research for a local health services provider, instances the logic of inquiry that I elaborate here. It is the experience of such inquiry and the experience in such inquiry, which the books at the top of my pile of current reading attend to, as in undertaking methodological study I further elaborate what method in relational empiricist inquiry is. For me, unlike most of my contemporaries, method is quite a different matter than methodology.

In Australia I work as part of the Ground Up group in the Northern Institute at Charles Darwin University in Australia’s Northern Territory. We undertake contract research, what might be called commonsense inquiry in search of useful and good responses for everyday problems of those who live in the NT’s Indigenous communities.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Whiter the Bread March 15, 2016 A recent study suggests that a diet rich in white bread,…

March 15, 2016

by Sean Philpott-Jones, Director, Bioethics Program of Clarkson University-Icahn School of Medicine at Mount Sinai

As someone who grew up in Northern California during the 1970s, I was surrounded by all the fads of the New Age movement: past-life regression, crystals, channeling, EST (or Erhard Seminars Training), macramé, hot tubs, and the nascent organic food movement.

My mother willingly embraced many of these fads, particularly the organic movement. Our school lunch boxes were often filled with granola, yogurt and sandwiches on homemade whole grain bread the color and consistency of the macramé potholders that hung in our patio. It wasn’t until after my mother started working long hours as a real estate agent that we kids finally got the sorts of lunches we craved: PB&J or bologna sandwiches on Wonder® bread, with a Hostess Ho-Ho or Ding Dong as a treat.

If a new study out of the University of Texas MD Anderson Cancer Center is correct, that much-ballyhooed switch from homemade wheat bread to store-bought white bread may have been a bad move, at least with respect to my lung cancer risk. That study looked at the link between diet – specifically a diet rich in high glycemic foods like white bread – and rates of lung cancer among non-smokers.

Lung cancer is one of the most common (and the most preventable) forms of cancer in the US. According to the American Lung Association, about 225,000 Americans are diagnosed and 160,000 die of lung cancer annually. The majority of these cases are directly linked to smoking.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

A New Edition of Clinical Pediatrics Is Now Available

March 4, 2016

Clinical Pediatrics (vol. 55, no. 2, 2016) is available online by subscription only.

Articles include:

  • “Where Children Die: Obstacles to Quality End-of-Life Care’ by Ashley P. Hinson and Philip M. Rosoff
  • “Associations between Parental Health Literacy, Use of Asthma Management Plans, and Child’s Asthma Control” by Erin L. Brigham, et al.
  • “Evaluating Guideline-Recommended Antibiotic Practices for Childhood Respiratory Infections: Is It Time to Consider Case-Based Formats?” by Heather Wright, Asheley Cockrell Skinner, and Ravi Jhaveri
  • “Autism Speaks Toolkits: Resources for Busy Physicians” by Jayne Bellando, Jill J. Fussell, and Maya Lopez

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Webinar Follow-Up: Health Literacy – Fostering Comprehension in Research and Clinical Care

Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Do you and your researchers do your part to improve communication practices to optimize participant comprehension? Recently, PRIM&R hosted a webinar titled Health Literacy: Fostering Comprehension […]

The post Webinar Follow-Up: Health Literacy – Fostering Comprehension in Research and Clinical Care appeared first on Ampersand.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

‘High-Profile and HIV+’ Revives Ethical Questions

This piece was originally published yesterday on
the Fordham News blog

By: Gina Vergel

Actor Charlie Sheen made headlines in 2011 with a number of trips to rehab, his dismissal from hit show Two and a Half Men, and a public meltdown.

Four years later, he’s back in the news, as he revealed he is HIV positive in a TODAY interview with Matt Lauer.

“It’s a hard three letters to absorb. It’s a turning point in one’s life,” the 50-year-old actor said to Lauer.

Human immunodeficiency virus, or HIV, is living inside the bodies of an estimated 35 million people worldwide. In the United States, 1.2 million people are living with HIV and the U.S. fails to prevent about another 50,000 infections every year. (source)

What does this high profile celebrity having HIV mean for the stigma often associated with the virus, or how the public is educated on the disease?

Fordham’s Celia Fisher, PhD, the director of both Fordham’s Center for Ethics Education and the HIV and Drug Abuse Prevention Research Ethics Training Institute, said a lot has changed since 1991, when NBA great Magic Johnson announced he was HIV positive.

“For those in countries where medication is widely available becoming HIV positive has become a chronic disease, rather than a death sentence on a path towards AIDS,” she said. “The risk of becoming infected has also been reduced through HIV prevention medications such as PrEP (Pre-Exposure Prophylaxis) that can prevent the acquisition of HIV, as well as evidence that taking certain HIV medications can lessen the risk of further transmission. There

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Mandatory submission of patient information about FGM: a pointless, damaging, discriminatory mess

Brenda Kelly and Charles Foster

Female Genital Mutilation (‘FGM’) is a term covering various procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons (WHO, 2012). It can be associated with immediate and long-term physical and psychological health problems. FGM is prevalent in Africa, Middle East and South East Asia as well as within diaspora communities from these countries

The Government, keenly aware of the political capital in FGM, has come down hard. The Serious Crime Act 2015 makes it mandatory to report to the police cases of FGM in girls under the age of 18. While we have some issues with that requirement, it is at least concordant with the general law of child protection.

What is of more concern is the requirement, introduced by the cowardly device of a Ministerial Direction and after the most cursory consultation (in which the GMC and the RCOG hardly covered themselves in glory), by which healthcare professionals, from October 2015, are legally obliged to submit patient-identifiable information to the Department of Health (‘DOH’) on every female patient with FGM who presents for whatever reason, through the Enhanced Dataset Collection (EDC). The majority of these women will have undergone FGM in their country of origin prior to coming to the UK.

The DOH has given disturbingly weak reassurances that the information will not be transmitted to third parties (such as the police or the Crown Prosecution Service).

We can see no evidence that this constitutionally troubling data collection is likely to produce any benefit.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Re-Engineering Shared Decision-Making

Guest post by Muriel R. Gillick

When physician-law-professor, Jay Katz, published The Silent World of Doctor and Patient in 1984, shortly after I completed my medical residency, I felt he was speaking directly to me.  He was telling me what kind of physician to be – not the old-school, paternalistic physician who told patients what treatment was best, but rather a physician who participated in shared decision-making.  For the next few decades, I aspired to cultivate patient autonomy by engaging my patients in deciding, with my input, how to approach their medical care.

There were substantial obstacles.  There were cognitive barriers to shared decision-making, as Twerksy and Kahneman brilliantly revealed: whether you spoke of a 60% success rate or a 40% failure rate seemed to matter, even though they were mathematically equivalent, as did the patient or doctor’s most recent experiences.  Then there was the problem of innumeracy, of patients lacking the tools needed to understand probabilities.  There was the challenge of limited health literacy, or inadequate knowledge of the vocabulary and concepts of health and disease.  And there were cultural biases, because patients of various ethnic backgrounds had a world view radically different from the physician’s biomedical model.  But each of those barriers could be surmounted with careful choice of words, better graphs, or cultural sensitivity.  I continued to strive to be a physician who practiced shared decision-making.

But more and more often, I found that patients wanted me to make a treatment recommendation.  It wasn’t that they didn’t want to be involved in the decision-making, or that they couldn’t understand medical jargon, or that they didn’t know what odds ratios were – although sometimes those were issues.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.