Tag: palliative care

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 Blogs

Jewish Guide to Practical Medical Decision Making

Check out
this new 368-page
book
 from Rabbi Jason Weiner: Jewish Guide to Practical
Medical Decision Making.


Due to rapid advances in the medical field, existing books on Jewish medical
ethics are quickly becoming outdated. 
Jewish
Guide to Practical Medical Decision Making
 seeks to remedy that by
presenting the most contemporary medical information and rabbinic rulings in an
accessible, user-friendly manner. 


Rabbi Weiner addresses a broad range of medical circumstances such as surrogacy
and egg donation, assisted suicide, and end-of-life decision making. Based on
his extensive training and practical familiarity inside a major hospital, Rabbi
Weiner provides clear and concise guidance to facilitate complex
decision-making for the most common medical dilemmas that arise in contemporary
society.


1. Facilitating Shared Decision-Making 

A. Understanding Terminology: Key Concepts to Facilitate
Collaborative Decision-Making

B. Truth-Telling: When Painful Medical Information Should
and Should Not Be Revealed 

C. Mental Illness: Determining Capacity and Proper Treatment
in Accordance with Jewish Law  


2. How Much Treatment? 

A. Risk and Self-Endangerment: Determining the
Appropriateness of Attempting Various Levels of Dangerous Medical Procedures

B. Making Decisions on Behalf of an Incapacitated Patient

C. Pediatrics: Jewish Law and Determining a Child’s Consent
and Treatment 

D. Palliative Care and Hospice in Jewish Law and Thought


3. Prayer  

A. Is Prayer Ever Futile? On the Efficacy of Prayer for
the Terminally Ill 

B. Viduy: Confessional Prayers Prior to Death


4.  At the End of Life

A. Advance Directives and POLST Forms  

B. End-of-Life Decision-Making: DNR, Comfort Measures,
Nutrition/Hydration, and Defining “Terminal” in accordance with Jewish Law

C. Withholding vs. Withdrawing: Deactivating a
Ventilator and Cessation of Dialysis and Cardiac Defibrillators at the End of
Life

D. Case

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 Politics of Elder Care, Social Care, and the “Dementia Tax”: A View from the United Kingdom

By Richard Ashcroft
Professor Richard Ashcroft, an AJOB Neuroscience Editorial Board member, teaches medical law and ethics at both the undergraduate and postgraduate level in the Department of Law at Queen Mary University of London.

The United Kingdom has recently gone through a General Election. The main reason the election was called by Prime Minister Theresa May was to secure a stronger mandate for the ruling Conservative Party, which was governing with a small overall majority of 19 seats over the Opposition parties. PM May’s argument was that in the negotiations with the other member states of the European Union over the UK’s exit from that Union (Brexit), an increased majority would give her a stronger bargaining position. As the election turned out, the electorate returned the Conservatives with fewer seats, and PM May had to form a minority administration, with a partial agreement to support the Conservative Party made with one of the smaller parties, the Democratic Unionist Party, which only contests seats in Northern Ireland. As a result PM May has a working majority, but one that is more fragile, rather than stronger.
Commentators have suggested a number of reasons for this outcome, but there seems to be general agreement that a turning point in the electoral campaign was the release of the election manifesto of the Conservative Party. While there are many reasons that might explain the downturn in support for PM May, one particular policy announced in the manifesto, deemed the “dementia tax,” attracted widespread criticism. 

UK population distribution.
Image courtesy of Wikimedia Commons.

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: An Ethical Analysis of a Legal non-Problem

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment. 

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 Opioid Epidemic is an Epidemic of Stigma

Kristie Serota and Daniel Z. Buchman argue that eradicating the stigma associated with opioid use is an ethical necessity and is critical for population health.

__________________________________________

The Government of Canada reports that over 2458 Canadians died of apparent opioid-related deaths in 2016 (excluding Quebec). Last November, an average of 4 people died from overdoses every day in British Columbia. Recent U.S. estimates project opioid-related deaths at over half-a-million people over the next decade. Interventions have been implemented in many jurisdictions to minimize opioid-related mortality, but each year the death toll continues to rise and shows no signs of relenting.

While people dying from opioids in large numbers is not new, the present epidemic arose due to several complex factors. For example, OxyContin was aggressively marketed and prescribed for chronic non-cancer pain. Doctors and the public were misled about OxyContin’s addiction risks. In addition, health professionals receive limited training on pain and addiction. There are also inequities due to the social determinants of health and the harmful effects of substance use-related stigmas.

Stigma, operating at individual, institutional, and social levels, has led to punitive legal, policy, and clinical responses toward people who use drugs. Stigma has also led to chronic underfunding of addiction research and treatment services relative to the burden of disease. Although the current epidemic does not discriminate across the social gradient, stigma disproportionately burdens people from less privileged social groups more frequently and harmfully than others. People with no history of a substance use disorder risk the pejorative label of ‘addicts’ when they are prescribed opioids for pain management.

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

Few Americans Plan For End-of-Life Decisions, Even If They Are Sick

Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term.

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

What We Do When We Resuscitate Extremely Preterm Infants

by Jeremy R. Garrett, Brian S. Carter & John D. Lantos

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Neonatal intensive care is one of the most successful medical innovations of the last half century. Every year, in the United States alone, nearly 500,000 babies are born prematurely. Before neonatal intensive care, most of those babies died, and those who survived often suffered significant life-limiting impairments. Today, most preemies survive without impairments.

In spite of this success, neonatal intensive care unit (NICU) care has always been viewed as ethically problematic. The objections to this care have taken different forms at different times.

Economists questioned whether neonatal intensive care was cost-effective. Careful studies showed that it was more cost-effective than any other form of intensive care, and even more cost-effective than many modalities of preventive care (including, for example, Pap smears).

Some parents claimed that doctors were not honestly informing them of the potential long-term sequelae of NICU care, and that, if honestly informed, many parents would choose palliative care. Careful studies showed that these parents were unusual. Most parents want more intensive care than even doctors and nurses think is appropriate, and they want it even when informed that survivors might be left with significant disabilities.

Bioethicists and doctors argued that neonatologists were playing God, that premature babies were not full-fledged persons, and that saving disabled babies was like an ill-conceived military mission. Each of these attempts to undermine the commitment made by parents, doctors, and society to saving preemies has been met with hard questions and strong rebuttals.

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: Three Issues That Did Not Make Social Media

by Ann Mongoven, Ph.D., MPH

All hearts go out to the Gard family in this time of grief for their son, Charlie.

The legal wrangling over Charlie’s care became a political football–unfortunately, about many things having little to do with Charlie.

Despite the involvement of Pope Francis, this was not a case about abortion rights or the sanctity of human life. Catholic tradition warns both that quality-of-life arguments can dehumanize the disabled, and that unduly burdensome medical care can become assaultive. There is no “Catholic” view of the case, and Catholic moral theologians disagree about it.

Despite the involvement of Donald Trump, this was not a case about the relative merits of the U.K. National Health Service (NHS) versus other health systems. It was not a case of utilitarian ethics pitted against duty-based ethics or love. The NHS provided extremely expensive intensive care for Charlie for most of his life, and British courts governed cases related to his care solely by a “best interest of the child” standard– amidst heated disagreement between Charlie’s parents and doctors about his interests. The European Court of Human Rights backed the British court decision.

The case did address questions about who should decide when parents and doctors disagree about a child’s medical interest. But contrary to some portrayals in the American press, it neither changed conventional parameters for addressing those questions, nor exposed major differences in legal reasoning used to address them in the U.K. and the U.S.  Both countries appeal to “best interest” standards for resolution, and both reject an absolutist interpretation of parental rights.

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

Palliative care in Latin America. Patients who require this treatment do not have access to it

Palliative is a patient right 

Since its introduction in the 1980s, palliative care has been evolving gradually in Latin America. There are currently 922 services in 19 countries. This corresponds to 1.63 services per million inhabitants, so most patients in the region who require this treatment do not have access to it.

The Atlas of Palliative Care in Latin America stresses that the development of palliative care in Latin America has been very slow and fragmented.  Thus, it ranges from 16.06 services per million inhabitants in Costa Rica down to 0.24 in Honduras. Chile has the highest absolute number of services (277), while 46% are located in Argentina and Chile, accounting for 10% of the entire Latin American population. This confirms that governments must adopt the public policies and measures necessary to guarantee that the needs of the entire population are met. North America and Europe countries are also far away from patients’ needs (Vida Universitaria. University of Navarra. 21-III-2014).

WHO evaluation of the increasing of palliative care need (see HERE)

The need for palliative care has never been greater and is increasing at a
rapid pace due to the world’s ageing population and increases in cancer
and other noncommunicable diseases. Despite this need, palliative care
is underdeveloped in most of the world, and outside North America,
Europe and Australia, access to quality palliative care is very rare.
Palliative care is expanding in the developed world in spite of myths and
misunderstanding about its nature and purpose, but is only beginning to
be available in the developing world where it is needed most.

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.