No, most people aren’t in severe pain when they die

Many people fear death partly because of the perception they might suffer increasing pain and other awful symptoms the nearer it gets. There’s often the belief palliative care may not alleviate such pain, leaving many people to die excruciating deaths.

But an excruciating death is extremely rare. The evidence about palliative care is that pain and other symptoms, such as fatigue, insomnia and breathing issues, actually improve as people move closer to death. More than 85% of palliative care patients have no severe symptoms by the time they die.

Evidence from the Australian Palliative Care Outcomes Collaboration (PCOC) shows that there has been a statistically significant improvement over the last decade in pain and other end-of-life symptoms. Several factors linked to more effective palliative care are responsible.

These include more thorough assessments of patient needs, better medications and improved multidisciplinary care (not just doctors and nurses but also allied health workers such as therapists, counsellors and spiritual… MORE





India outlawed commercial surrogacy – clinics are finding loopholes

Would you pay someone US$150,000 to have your baby?

The high cost of surrogacy in the U.S. has pushed many potential parents to seek cheaper options elsewhere. Countries like India and Thailand have attracted surrogacy clients from countries like the U.S., Britain, Australia and Israel. The global surrogacy trade, however, has been fraught with scandals.

In India, where I’ve studied surrogacy since 2008, the government is rethinking regulations. Gay couples were banned from using commercial surrogacy in 2012. In March 2017, the Indian government extended the commercial ban to everyone. Now, only so-called “altruistic surrogacy” is allowed – when a consenting female family member bears a child for a childless heterosexual Indian couple without pay.

But what impact are bans on commercial surrogacy having for women who work in the reproductive industry?

Downsides of commercial surrogacy

Some bioethicists and feminists have welcomed bans on commercial surrogacy.… MORE





Untested stem cell therapies finally drawing attention of Australian regulators

The business of for-profit clinics offering unproven stem cell treatments is controversial all over the world. There have been reports of baseless claims of cures and adverse events -- even deaths.

Previously, these stem cell treatments were available primarily in developing countries with less regulation or weak law enforcement. However, a highly developed country like Australia has had stem cell businesses since 2011, There are not more than 60 of them. --  among the world's highest concentration of stem cell clinics. Australian clinics are advertising a variety of medical procedures and anti-ageing therapies.

In 2013, a 75-year-old woman with Alzheimer’s disease, Sheila Drysdale, died as a consequence of procedures from liposuction used to extract stem cells to treat her dementia condition. Hers was the first death in Australia at a stem cell clinic. The coroner was scathing in his assessment in 2016:

“While all medical and surgical procedures necessarily start off experimentally, there is a world… MORE





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… MORE





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… MORE





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… MORE





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… MORE





‘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

MORE




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… MORE





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… MORE




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