Tag: quality of life

Bioethics Blogs

Politics of Pain: Investigating the Ethics of Palliative Care as a Global Human Right

by Alix Masters

Within the last decade, strides have been made in the field of global health policy to extend the reaches of palliative care universally.  In 2014, the World Health Organization formally declared palliative care a global human right.[1] This development in global health policy is a positive one when we consider the medical politics of pain relief across racial difference.  Both in the United States and abroad, there is a long medical history of discriminatory practices against certain groups of people with regard to pain management—including withholding necessary pain medication altogether.  Therefore, in many ways the declaration of palliative care as a human right is a necessary step in ensuring all peoples, regardless of identity, have their pain taken seriously by the medical establishment and have their comfort made a medical priority.  When we consider how different cultures negotiate beliefs around death and pain relief, however, the issue of palliative care as a universal human right becomes more complex.  For example, countries with strong histories of Buddhist thought and culture have traditionally opposed the ideology of palliative care.[26]  In Buddhism, suffering is considered an inextricable part of life and masking this suffering through medical intervention is looked down upon.[2]  For example, Vietnam, a country with a culture strongly imbued with Eastern Buddhist values, has a long history of rejecting palliative care and pain medications in general.[26]  Due to this, the World Health Organization’ declaration that palliative care is a universal human right could also be understood as a Western organization blatantly ignoring Buddhist cultural traditions. 

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

Widowed Early, A Cancer Doctor Writes About The Harm Of Medical Debt

August 10, 2017

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How she got from there to here is a story about how health care and money are intertwined in ways that doctors and patients don’t like to talk about.

But Chino is determined to do so.

“I think of him every day,” Chino says of her late husband, Andrew Ladd. “It drives me to do the type of research that I do — that’s looking at the financial toxicity of cancer care.”

Chino is co-author of a research letter, published Thursday in JAMA Oncology, that shows that some cancer patients, even with insurance, spend about a third of their household income on out-of-pocket health care costs outside of insurance premiums.

It’s an issue Chino knows well.

… Read More

Image via Flickr AttributionNoncommercialShare Alike Some rights reserved by See-ming Lee 李思明 SML

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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

Right to Try: Why Logic and Facts Won’t Win This One

by Craig Klugman, Ph.D.

Last week the U.S. Senate passed bill S. 204, the Trickett Wendler Right to Try Act of 2017. Trickett Wendler was a woman with ALS. The ALS association and her family lobbied Congress to support this bill to give all patients living with a terminal illness the “right” to purchase experimental drugs from pharmaceutical companies. Essentially, this bypasses the FDA’s compassionate use program. Instead of filing an application for FDA compassionate use (which the FDA approves 99% of the time), the patient asks the drug manufacturer directly. As I have written in this space before, such laws threaten public health efforts through the FDA to ensure safe and efficacious pharmaceuticals.

Currently, 37 states have such right-to-try laws and more have considered them. The push for these laws begins with the Barry Goldwater Institute, a libertarian think-tank, funded in part by the Koch brothers. Last month I had the surreal experience of debating two right-to-try supporters (one from a business school and one from the Goldwater Institute) about these laws which they base in a “right to self-medicate.” There were two of us against self-medication and two in favor of it.  You can read the commentaries and responses of the debaters here.

In this essay, I do not plan to restate my arguments against right-to-try. You can read my thoughts on this policy here and here. Instead, this post will examine the tools of argumentation that my opponents employed in the debate. It is important to show their debate techniques so that we all have a better understanding of how to analyze claims to support right-to-try and to realize why better facts and better arguments are falling on deaf ears.

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

 Guest Post: Withdrawing life-prolonging treatment in the patient’s best interests: The implications of Briggs

Guest Post: Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

Paper:  When ‘Sanctity of Life’ and ‘Self-Determination’ clash

In a recent landmark judgment in the Court of Protection (Briggs v Briggs [2016] EWCOP 53), a judge authorised withdrawal of life-prolonging treatment from a minimally conscious patient with potential for further recovery.  Our article in Journal of Medical Ethics addresses the implications of this judgment, highlighting its potential to strengthen compliance with the Mental Capacity Act 2005, and the delivery of person-centred care.

How this will work in practice is another question.

We have supported families (CK and JK) and represented patients (JC) in a series of cases – several of which have reached court – in which families sought treatment withdrawal and doctors refused.  We know many families who believe that their brain-injured relative would not want to receive on-going life-prolonging interventions.  It usually takes years for families to come to this view and even longer to communicate it to doctors. Some health care professionals can be dismissive – or even hostile – when families speak up.   Even when doctors acknowledge that a patient will never regain consciousness, some have ethical objections to withdrawing treatment from a clinically stable patient.  It feels, they say, like ‘euthanasia’.

An ethical imperative to give treatment is experienced even more acutely, by some doctors, when the patient may make some degree of ‘progress’ – perhaps recovering consciousness and the ability to interact with others.  The treating clinician in the Briggs case was firmly of the view that it would be unethical to withdraw treatment from a patient whose level of consciousness might improve over time. 

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 Calls for Repeal Comes Opportunity for Universal Coverage

by Craig Klugman, Ph.D.

According to the conservative press, the Affordable Care Act is failing. They point to the number of insurance companies that have withdrawn from the marketplaces including Ohio, where there are 20 counties with no plans available. They point to rising premiums and co-pays, and consider the experiment a failure that must be repealed. Of course, they are not considering the cost savings that preventive care provides in the longer term or the improved quality of life in having medical care. Those reports also ignore that the federal government has been giving confusing messages, rolling back the supportive regulations and subsidies, and that the healthcare industry is trying to adapt to a shifting landscape. Nor do they talk about the lowest rate of uninsured ever, the increase in people able to see doctors, the decrease in hospital’s unreimbursed care, the decrease in national health care spending, and the decreasing inflation rate of medical costs.

In a recent meeting between the executive and (Republican) legislative branches, there is a renewed call to repeal the Affordable Care Act. What is a state to do that has to create a budget and does not know what the health care laws will be or even what federal funds might be available for helping provide care? Some states are not waiting around for repeal and replace but are taking matters in their own hands. New York, California, and Nevada may soon be on the way to single payer health systems. And if Republicans are true to their states rights roots, then letting states design and run their own systems should be a good thing.

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

Good Death, or Assisted Suicide?

The Case of Mr. Perry and his Pacemaker

Tarris Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics

NOTE: Dr. Rosell, a bioethics consultant and educator, will present the case of Mr. Perry for ethics discussion and likely debate on Thursday, June 22, 2017 at 7:00 PM in the artfully rebuilt Westport Presbyterian Church, 201 Westport Rd, Kansas City, MO. Bring your perspectives, arguments, and personal stories of moral medical dilemma. Admission is free. All are invited and welcome.

Mr. Perry (not his real name) was 83 years old and had several medical problems. He had spent the past several months in and out of hospitals and rehab. Prior to that, he lived independently in a small Midwestern town. Widowed many years ago, he subsequently enjoyed the company of a lovely lady friend who lived down the street from the Perry home. He had five adult children and numerous grandchildren.

Life should have been relatively good for this octogenarian. But life was not good. Not anymore. “My body is all worn out. I’m worn out. Don’t want to do this anymore, Doc. They say I can’t go home and be safe. And I’m NOT going to a nursing home. No way! Just stop that little gadget that shocks me and the part that keeps my heart going. I want them stopped. Yes, the pacemaker, too. A magnet will stop it, right? Just do it. Please.”

Tired of Fighting

Mr. Perry had a cardiac resynchronization therapy defibrillator (CRT-D) implanted a few years ago. It included an electrical pacing component for heart rhythms, on which the patient was 100% dependent.

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 – May 2017 by Livia Garofalo

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards.

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

Radical Technology, Bodyhacking, & Medicine

Michele Battle-Fisher calls on conventional medical to consider how acts of healing will change in the context of transhumanism.

__________________________________________

Humanness is in flux as human bodies are being hacked (altered) by transhumanists and others in their quest for super wellness, super intelligence and super longevity.

Bodyhacking refers to changing the human body in appearance and function using a “device, technique or procedure that an individual CHOOSES to utilize, augment, modify or improve their body.” Examples of bodyhacking include implanting magnets under one’s skin to be able to open a garage door, and implanting an engineered human ear on one’s arm to gain hypersensory abilities. Typically, such ‘hacks’ are not approved by governmental agencies or traditional medical insurance. According to Body Hacking Con, while bodyhacking is typically considered fringe, bodyhackers are “simply people who hack (alter) their bodies.”

Bodyhacking is part of a counterculture movement that is often called transhumanism. Transhumanists believe that the body is obsolete and that death is a cruel end to be avoided. In their view, the time is ripe for taking advantage of fast-paced technologies to improve our imperfect bodies and eventually cheat death.

Recent revolutionary innovations such as CRISPR/Cas9 gene-editing technology are helping to further push the boundaries of bodyhacking by fighting the genetic causes of death. While the medical community has accepted the idea of somatic cell gene editing, germline gene editing remains controversial.  There is much excitement in the transhumanism community that biohacks such as CRISPR will move from the purvue of controlled medical settings to the at-home, do-it-yourself labs.

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 Right to Die The Law of End-of-Life Decisionmaking – 2nd 2017 Supplement

For decades, Wolters Kluwer has been publishing an annual supplement for The Right to Die: The Law of End-of-Life Decisionmaking.  This year, we are moving to a semi-annual plan.  So, there will soon be a second 2017 update, the “2017-2 Supplement.”


Highlights of this extra supplement cover the most recent legal developments—judicial cases, legislation, and news accounts of important legal proceedings that are not officially reported—concerning end-of-life decisionmaking. Some (and there are many more) specific important matters covered in the supplement include:

  • The passage of statutes authorizing medical aid-in-dying in two more states, bringing the total number of jurisdictions in which the practice is legal to seven.
  • The passage of statutes explicitly criminalizing or otherwise prohibiting aid-in-dying in two more states.
  • The passage of statutes authorizing default surrogate priority lists in two more states.
  • An innovative Montana statute authorizing physician decisionmaking for incapacitated unrepresented patients with no surrogate, agent, or guardian.
  • The passage of a statute authorizing a POLST program, bringing the total number of jurisdictions formally authorizing or regulating POLST to thirty-three. 
  • A Kansas statute forbidding the institution of a DNR order for a minor without consent from the parent or guardian. 
  • The passage of statutes in four states both forming palliative care and quality of life task forces and directing health departments to promote both professional and consumer palliative care education.
  • A strong statement of support for autonomy through advance directives from the California Court of Appeals as it awarded attorneys’ fees to a governmental agency that challenged the end-of-life decisionmaking of a husband, with his wife as agent, supported by the health providers involved in his care. 

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.