We need a more comprehensive ethics of disorders of consciousness

Disorders of consciousness like coma, unresponsive wakefulness syndrome, and what is known as minimally conscious state, are among the most challenging issues in current ethical debates. Ethical analyses of these states usually focus on the ‘residual’ awareness that these patients might still have. Such awareness is taken to have bearing on other factors that are usually considered ethically central, like the patients’ well-being.

Yet, when we take a look at recent scientific investigations of mental activity it appears that things are much more complicated than usually thought. Cognitive science provides empirical evidence that the unconscious brain is able to perform almost all the activities that we (wrongly) think are exclusive of consciousness, including enjoying positive emotions and disregarding negative ones. To illustrate, people that are subliminally exposed to drawings of happy or sad faces are emotionally conditioned in their evaluation of unknown objects, like Chinese characters for people who don’t know Chinese. If preceded by subliminal happy faces, these characters… click here to read whole article and make comments





We need to address questions of gender in assisted dying

One of the principal motivations behind current efforts to legalise assisted suicide in Victoria and New South Wales (and most jurisdictions) is patient autonomy. However, research suggests “gendered risks” may thwart women’s autonomy in end-of-life decisions, making them uniquely vulnerable to assisted suicide laws.

While eligibility under the Victorian and NSW bills requires that a patient must be suffering from a terminal illness from which they will likely die in 12 months, the concern for women is that the final decision to end their lives may nevertheless be influenced by risk factors that challenge the rhetoric of “choice”. Here are some of those “gendered risks”.

Longer life span. Women tend to live longer than men. This means they are more likely to develop diseases and disabling conditions, or experience elder abuse and discrimination, both of which could motivate the desire for assisted suicide.

The Australian Law Reform Commission’s report on elder abuse recognised that women are significantly more… click here to read whole article and make comments





When a ‘good death’ was often painful

Edvard Munch, The Dead Mother and Child, 1897-9

Today, a primary goal of both movements aimed at care of the dying – palliative care and euthanasia – is to eliminate suffering. These are underpinned by the idea that a good death is a painless death. But it wasn’t always so.

The term “euthanasia” is derived from the Greek for good death, but it only began to be used in a modern and familiar way in the late 19th century. For centuries in Western societies, “euthanasia” referred to a pious death blessed by God.

The means of achieving a good death was set out in the enormously popular ars moriendi (art of dying) guides that offered prayers, attitudes and actions intended to guide the dying towards salvation. This wasn’t necessarily a painless process. Far and away the most reproduced image of good dying was Christ’s crucifixion.

The pain that could accompany dying was seen as punishment for sin… click here to read whole article and make comments





The hidden stories of medical experimentation on Caribbean slave plantations

‘The Plantation,’ oil on wood, ca. 1825. The Metropolitan Museum of Art, CC BY

In the natural course of events, humans fall sick and die. Patients hope for miraculous remedies to restore their health.

We all want our medicines to work for us in wondrous ways. But how are human subjects chosen for experiments? Who bears the burden of risk? What ethical brakes keep scientific enthusiasm from overwhelming vulnerable populations? Who goes first?

Today, the question of underrepresented minorities in medical experimentation is still volatile. Minorities, especially African-Americans in the U.S., tend to be simultaneously underrepresented in medical research and historically exploited in experimentation.

My new book, “Secret Cures of Slaves: People, Plants, and Medicine in the Eighteenth-Century Atlantic,” zeroes in on human experimentation on Caribbean slave plantations in the late 1700s. Were slaves on New World sugar plantations used as human guinea pigs in the same way African-Americans were in the American South centuries later?

Exploitative… click here to read whole article and make comments





‘Digital dust’

Now for something completely different – at least for BioEdge: bioethics-inspired poetry. Johann Roduit sent us some thoughts in verse about “enhancement, transhumanism, immortality ... “ Dr Roduit is Managing Director  of the Institute of Biomedical Ethics and History of Medicine, at the University of Zurich, in Switzerland.

Responses? Comments?

Digital dust

A creature of clay. I am 
Shattered so easily.  
Delicate dust, 
Facing Pompeii's destiny.

A man of steel. I desire 
An artificial heart.
Simulated soul,
Chasing the philosopher’s stone.

A ghost in a shell. I become
Deprived of my flesh.
Digital dust,
Dissolving under Icarus’ sun.

A creature of steel. I remain
Fragile undoubtedly.
Digital death,
Hoping for the Potter’s breath.

"Digital Dust" was first published in the journal Medical Humanities

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Interview: Lydia S. Dugdale on death and dying

Assoc. Professor Lydia S. Dugdale MD is the Associate Director of the program for biomedical ethics at Yale School of Medicine, in New Haven. She recently edited a book on death and dying, Dying in the Twenty-First Century: Toward a New Ethical Framework for the Art of Dying Well.

BioEdge asked her to explain some of her ideas on the modern way of confronting death.

* * * * * * * *

BioEdge: Why are current approaches to dying problematic? Most people (in the developed West, that is) die in hospitals where patients are clean, well-fed and adequately cared for medically, aren’t they?

Lydia S. Dugdale: The question in my mind is whether current medicalized approaches to death are sufficient to solve the existential quandaries of my patients.

I have had office visits with patients whose only goal is to talk about what’s going to happen to them. And they don’t mean what physical dying… click here to read whole article and make comments





Only in Sweden? But why?

Child protection agencies all over the world should examine closely the epidemic of “Resignation Syndrome” among refugee children in Sweden. This bizarre phenomenon began in 2001 and continues to this day.

At least a thousand refugee children awaiting political asylum, and possibly many more, are affected. The children, aged 7 to 19, are unable to eat, speak and move. According to a recent study, the typical patient is “totally passive, immobile, lacks tonus, [is] withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”.

Unless they are given intensive nursing care, they will die.

In Swedish Board of Health and Welfare’s version of ICD-10, the diagnostic manual used by United Nations agencies, the children have been given diagnostic code F32.3A. The Board acknowledges that specialists disagree about the reason for the disease.

After asylum is granted most of the children recover after a few weeks or months. But about one in seven do… click here to read whole article and make comments





Update from the UK: Noel Conway can challenge assisted dying ban

Noel Conway and supporters 

A possible tipping point in overturning the United Kingdom’s blanket ban on assisted suicide (under s2(1) Suicide Act 1961) has recently been highlighted. That possible tipping point comes in the form a challenge to the legality of the ban by Mr Noel Conway.

It was argued the importance of Mr Conway’s case lies in its long term chances of success. Despite Mr Conway’s case being in its initial stages, it has recently cleared an important legal hurdle in the English Court of Appeal; Mr Conway can challenge the assisted dying ban.

To recap, Mr Conway’s attempts to overturn the ban arise from tragic and distressing facts. He has Motor Neurone Disease, and he has largely lost his mobility. He uses a wheelchair, and needs assistance with many everyday activities.

In order to attempt to overturn law, Mr Conway seeks a declaration under s4(2) of the Human Rights Act… click here to read whole article and make comments





Caution needed with multipotent stem cells

Everyone seems to be excited about stem cells. Their excellent promise as a treatment for a range of diseases and injuries mean almost guaranteed coverage for research. While some types of stem cells are already being used in treatment – for treating diseases of the blood and leukaemia, for example, multiple sclerosis and problems in the bone, skin and eye – there’s still a lot of hype and exaggeration, with some even selling empty promises to seriously ill or injured patients.

There are many different types of stem cells in the body and they have varying abilities. When most people think of stem cells, it’s often of embryonic stem cells, which have been controversial for ethical reasons, or their closely related cousins, induced pluripotent stem (iPS) cells, adult cells that have been reprogrammed to acquire stem cell-like properties. As the word “pluripotent” suggests, these stem cells have the capacity to transform into any cell… click here to read whole article and make comments





Dear Mr Trump, isn’t it about time to announce your bioethics commission?

Last week, seven Democratic members of the US House Representatives sent a letter to the White House asking President Trump to appoint a director to the Office of Science and Technology Policy (OSTP), position that normally serves as the presidential science advisor. The impetus for writing the letter was a communication from the Deputy National Science Advisor that two hoax reports, that tried to undermine climate change, were circulating through the West Wing as “science.” The Congresspersons state “Where scientific policy is concerned, the White House should make use of the latest, most broadly-supported science…Relying on factual technical and scientific data has helped make America the greatest nation in the world.” Among the signers are a PhD in math and a PhD in physics. They hold that the US faces strong questions that revolve around science, both opportunities and threats, and the need for a scientist who can understand and explain the importance of objective fact to the chief executive is essential.

click here to read whole article and make comments



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