Tag: caregivers

Bioethics Blogs

In the Journals – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

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

How Can You Take Part in Clinical Research? Looking Beyond “First in Human”

For a remarkable journey through the front lines of clinical research, I’d like to invite you to join me in viewing First in Human, which premieres tonight at 9 p.m. ET on the Discovery Channel. This three-part docuseries, to be aired August 10, 17, and 24, provides an unprecedented look inside the NIH Clinical Center here in Bethesda, MD, following four of the many brave patients who’ve volunteered to take part in the clinical trials that are so essential to medical breakthroughs.

You’ll learn about what it’s like to take part in an experimental trial of a new treatment, when all standard options have failed. You’ll see that the NIH Clinical Center and its staff are simply amazing. But keep in mind that you don’t have to travel all the way to Bethesda to be part of outstanding, NIH-funded clinical research. In fact, we support clinical trials all across the country, and it’s often possible to find one at a medical institution near your home. To search for a clinical trial that might be right for you or a loved one with a serious medical problem, try going to ClinicalTrials.gov, a web site run by NIH.

According to a national survey conducted a few years ago, 16 percent of respondents reported that they or a family member had participated in a clinical trial [1]. But among adults with cancer, participation in clinical trials is estimated to be only about 3 percent [2].

These numbers need to go up! Not only do clinical trials offer sick people who have no other options a chance to receive experimental treatments that may extend or save their lives, such work is essential for advancing scientific knowledge in ways that will benefit the health of future generations.

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

NIH Family Members Giving Back: Diane Baker

Caption: My wife Diane inspired me and my staff to volunteer to make dinner for patients and their families at The Children’s Inn at NIH.
Credit: NIH Record

My blog usually celebrates biomedical advances made possible by NIH-supported research. But every August, I like to try something different and highlight an aspect of the scientific world that might not make headlines. This year, I’d like to take a moment to pay tribute to just a few of the many NIH family members around the country who, without pay or fanfare, freely give of themselves to make a difference in their communities.

I’d like to start by recognizing my wife Diane Baker, a genetic counselor who has always found time during her busy career to volunteer. When I was first being considered as NIH director, we had lots of kitchen table discussions about what it might mean for us as a couple. We decided to approach the position as a partnership. Diane immediately embraced the NIH community and, true to her giving spirit, now contributes to some wonderful charities that lend a welcome hand to patients and their loved ones who come to the NIH Clinical Center here in Bethesda, MD.

As a genetic counselor, Diane spent many years working with pediatric patients and their families at the University of Michigan, Ann Arbor. Now she puts this real-world experience to great use as a board member for the Friends of Patients at the NIH. This dedicated group provides a support system for patients participating in an NIH clinical trial and their families.

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

When Women are Surrogate Mothers: Is that work?

Alana Cattapan, Angela Cameron, and Vanessa Gruben warn that speaking about “compensation” is a way of avoiding difficult conversations about payment to surrogates.

__________________________________________

A recent Canadian Medical Association Journal (CMAJ) news article reported that the Canadian Fertility and Andrology Society (CFAS) has called for the federal government to reconsider the ban on payment for surrogacy in Canada. The article suggests that industry professionals and academics alike are coming around on compensation for surrogacy, with support growing all the time.

In Canada, payment for surrogacy, egg donation, and sperm donation is banned under the 2004 Assisted Human Reproduction Act. Under the Act, surrogates (like egg donors and sperm donors) can be reimbursed for receipted expenses. With a note from their doctor, surrogates can also receive some money for lost work-related income during pregnancy.

The Act states that this reimbursement of expenses must follow the relevant regulations. Until now, however, these regulations have never been drafted. After more than a decade, Health Canada is now in the throes of making them. This is occurring as surrogacy in Canada is expanding to accommodate more and more people from countries where surrogacy is more expensive, harder to access or banned completely.

Women Working in a Field by Winslow Homer 1867.

It is in this context that the CFAS (which is a part-medical association, part-industry organization representing the fertility industry and its doctors, lawyers, scientists and ethicists) has called for the government to reconsider the ban on payment.

 It is important to know that the market in surrogacy in Canada is a profitable one.

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

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 Blogs

How Kids See the World Depends a Lot on Genetics

Caption: Child watches video while researchers track his eye movements.
Credit: Washington University School of Medicine, St. Louis

From the time we are born, most of us humans closely watch the world around us, paying special attention to people’s faces and expressions. Now, for the first time, an NIH-funded team has shown that the ways in which children look at faces and many other things are strongly influenced by the genes they’ve inherited from their parents.

The findings come from experiments that tracked the eye movements of toddlers watching videos of other kids or adult caregivers. The experiments showed that identical twins—who share the same genes and the same home environment—spend almost precisely the same proportion of time looking at faces, even when watching different videos. And when identical twins watched the same video, they tended to look at the same thing at almost exactly the same time! In contrast, fraternal twins—who shared the same home environment, but, on average, shared just half of their genes—had patterns of eye movement that were far less similar.

Interestingly, the researchers also found that the visual behaviors most affected in children with autism spectrum disorder (ASD)—attention to another person’s eyes and mouth—were those that also appeared to be the most heavily influenced by genetics. The discovery makes an important connection between two well-known features of ASD: a strong hereditary component and poor eye contact with other people.

The new study was led by Warren Jones, Emory University School of Medicine, Atlanta, and John Constantino, Washington University School of Medicine, St.

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

PCORI Announces New Initiative to Support Shared Decision Making

The Patient-Centered Outcomes Research Institute (PCORI) today announced a new initiative designed to help patients work with their clinicians to choose the healthcare options best suited to their needs.


PCORI’s Board of Governors today authorized up to $6.5 million in initial funding to support efforts to promote wider use of shared decision making strategies. Shared decision making is the process by which clinicians and patients consider available effective treatment options and the comparative evidence for risks and benefits of each, and then work together to choose which might work best for the patients. 


This process is important because even when adequate evidence is available to support the effectiveness of two or more options, individual patients often have unique priorities and preferences that lead them to make different choices.


PCORI has always been committed to promoting shared decision making as a path to improving patient care and outcomes. The institute has made a significant investment in research related to shared decision making strategies and interventions to help patients, caregivers and clinicians work together to consider healthcare options. 


This new initiative is an extension of that effort, focusing on putting into practice tested strategies that incorporate the latest evidence.
“PCORI recognizes that for many clinical situations, patients and clinicians need to work together to consider all available treatment options, informed by the patients’ preferences,” said PCORI Executive Director Joe Selby, MD, MPH. “For a variety of reasons, shared decision making isn’t as widely used in practice as it should be. Figuring out how to address the barriers limiting its use and move these strategies into practice is important to us.”

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

Charlie Gard, the New England Journal of Medicine, and the Limits of “Conscience”

I would venture that most bioethicists would agree it would be ethically permissible to remove life support and active care from little Charlie Gard, and let him die.   The hospital in Britain where he has been receiving his care wants to do that, and the courts agree.  But why do they insist on this action when his parents want to transfer him for another try at experimental treatment, have raised the money, and reportedly have a center in the US willing to accept him for such an attempt?

I can think of two reasons.  One is a frank utilitarian insistence on limiting costs.  It has been publicly charged that is precisely the motive for this and similar recent cases in the U.S.

Or it could be that those caregivers who argue against the futility of such care do so on conscience grounds.  This is at least a more charitable reading.

But if that is the case, then might we not ask:  on what grounds do such conscience concerns mandate blocking the wishes of the baby’s parents—setting aside just how quickly the futility of further care would be evident?  It is commonly argued that practitioners who wish not to provide abortions or participate in assisted suicide retain a professional obligation to refer to someone who will perform the procedure in question.

So why don’t we demand that the British hospital actively refer Charlie’s parents to another facility?  Just wondering…

Maybe the parents in this case are the ones appealing to conscience, but, in the view of the medicolegal authorities, wrongly so. 

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

In the Journals – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

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

Health Affairs Briefing: Advanced Illness And End-Of-Life Care

Few areas of health
care are as personal, or as fraught, as care for people with serious
illnesses who are approaching death. At a point in their lives when their
needs are often as much social and spiritual as they are medical, people
are confronted with a fragmented, rescue-driven health care

system that produces
miraculous results but also disastrous failures.


As the nation’s population of individuals over the age of 65 is expected to
reach 84 million by 2050, addressing these challenges becomes increasingly
important, requiring coordination across multiple sectors and levels of
government. Innovations are needed to produce improvements in care
delivery; better communication between clinicians, patients and families; greater
uptake of advance care planning tools; and payment systems and policies
that support patient needs and preferences. 


The July 2017 issue of Health Affairs, “Advanced Illness and End-of-Life Care”
includes a comprehensive look at these issue and others. In addition, HA
is hosting a forum at the National Press Club on
Tuesday, July 11.


Topics covered will include:

  • Care At The End Of Life
  • Financing & Spending
  • Quality Of Care &
    Patient Preferences
  • Hospice & Palliative
    Care

The program will
feature the following presenters:

  • Melissa Aldridge, Associate
    Professor, Department of Geriatrics and Palliative Medicine, IcahnSchool
    of Medicine at Mount Sinai, on Epidemiology And Patterns Of Care At The
    End Of Life:Rising Complexity, Shifts In Care Patterns And Sites of Death
  • Rachelle E. Bernacki,
    Director of Quality Initiatives, Psychosocial Oncology and PalliativeCare,
    Dana Farber Cancer Institute; Assistant Professor, Harvard Medical School;
    and Associate Director, Serious Illness Care Program, Ariadne Labs, on A
    Systematic Intervention To Improve Serious Illness Communication In
    Primary Care
  • Julie Bynum, Associate
    Professor Geisel School of Medicine, Dartmouth, on High-Cost Dual Eligible
    Service Use Demonstrates Need For Supportive And Palliative Models Of Care
  • Janet Corrigan, Chief
    Program Officer for Patient Care, Executive Vice President, Gordon and
    Betty Moore Foundation
  • Katherine Courtright,
    Instructor of Medicine, Division of Pulmonary, Allergy, and Critical Care
    Medicine University of Pennsylvania Health System on Approximately One In
    Three US Adults Completes Any Type Of Advance Directive For End-Of-Life
    Care
  • Robrecht De Schreye,
    Researcher, End of Life Care, University of Brussels, on Applying
  • Quality Indicators From
    Linked Databases To Evaluate End-Of-Life Care For Cancer Patients In
    Belgium
  • Rachel Dolin, Fellow, David
    A.

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.