FROM THE EDITOR
For better or worse, this week’s newsletter seems largely dedicated to topics revolving around euthanasia. Belgium’s system is finally getting the close critical scrutiny it deserves in a new collection of essays from Cambridge University Press.
Coincidentally, the doyen of euthanasia there, Dr Wim Distelmans, has just released statistics about child euthanasia. “Nothing to see here; please move along,” seems to be his message. In three years, only two children have been euthanised. Perhaps that is an index of how normal euthanasia has become in his country.
Assisted dying is a hot topic, too, in Australia, in the states of Victoria and New South Wales. BioEdge has organised a free forum on NSW’s Voluntary Assisted Dying Bill on this coming Thursday in Sydney. It will be held at Parliament House, on Macquarie Street, from 9.30am to 12.30pm. A number of medical and legal experts will be discussing the possibility of legal euthanasia in New South Wales. For more details, please check our Facebook page.Click Here to Comment on this letter
|This week in BioEdge|
A book from Cambridge University Press to be released next week takes a critical look at euthanasia in Belgium. Euthanasia and Assisted Suicide: Lessons from Belgium features essays on legal, philosophical and medical issues, as well as how euthanasia affects vulnerable populations, with a number of authors from Belgium and the UK.
The editors, David Albert Jones, of the Anscombe Bioethics Centre, Oxford; Chris Gastmans, of the Faculty of Medicine at KU Leuven in Belgium; and Calum MacKellar, of the Scottish Council on Human Bioethics, say that the volume is the first interdisciplinary study of Belgian euthanasia. The authors point out that
“Death by euthanasia in Belgium is, generally, no longer regarded as an exception requiring special justification. Instead, it is often regarded as a normal death and a benefit not to be restricted to without special justification.”
In a sense, Belgium is a special case, where there is very little opposition to the continuing expansion of eligibility for euthanasia and very little scepticism about how it is administered. In the United States, on the other hand, opponents are vocal and watchful where assisted suicide is legal. This proves to be a barrier to the inexorable bracket creep that Belgium is experiencing. However, the authors’ final advice is that:
... the only secure way to avoid these consequences is to resist calls to legalise euthanasia or assisted suicide and instead invest in palliative care as well as research into end-of-life practices while re-emphasising the preciousness of human life.”
The news that the Belgian parliament had legalised euthanasia for children under 18 made news around the world in 2014. But what has actually happened since then?
According to the chairman of the Belgian euthanasia commission, Dr Wim Distelmans, only two children have been euthanised, both in or after 2016. "The situation is similar to the situation in the Netherlands, where five cases have been recorded in ten years,” he says. “We have only had two cases in three years.”
"We knew that there wouldn’t be many," says Professor Distelmans. "Some 100,000 adults die every year in Belgium for every 1,000 minors. When it is known that 2,000 deaths in adults are the result of euthanasia, there couldn’t be many among minors. Children can only apply when they are terminally ill, while euthanasia is possible for adults even if they aren’t terminally ill patients."
An R-rated snuff movie is an original way to promote euthanasia. But it is the marketing tactic being used by Go Gentle Australia, an assisted dying lobby group headed by media personality Andrew Denton.
"Stop The Horror is a short, five-minute film dealing with unimaginable pain and despair," a Go Gentle spokesperson told The Age. "It has been designed to be virtually unwatchable. The film confronts viewers with a harrowing retelling of the true events surrounding one man's traumatic death. The film is so confronting it has a stop button on screen so viewers can bail out whenever they want."
Go Gentle claims that the film is so graphic that it has been banned by YouTube and can only be viewed on its own website. If this is true, YouTube is not very vigilant, because it can be seen here.
However, there is no doubt that it is emotionally harrowing. The director is Justin Kurzel, whose major success was the Snowtown, a 2011 film about serial killers in Adelaide, which was described as an “unwatchably violent film”.
“Stop the Horror” purports to be a factual recreation of the last days of 56-year-old Greg Sims, who died of brain cancer in 2005. The distress of his relatives is as hard to watch as his own convulsions and pain.
The film is part of a sophisticated campaign to influence politicians in the state of Victoria, who will probably be debating “assisted dying” in Parliament in October.
"To show this person dying without having any comment from doctors who specialise in this sort of thing is really dishonest, isn't it?" commented Margaret Tighe, of Right to Life Australia. "The bottom line in all of this is that you shouldn't change the law to give a small percentage of people in the community the right to have their lives ended because you're changing dramatically the laws around homicide. We live in communities where you're not allowed to kill people."
American pop singer Selena Gomez received a kidney transplant from her best friend, she revealed this week. Ms Gomez, 25, suffers from lupus and the disease was attacking her kidneys. TV actress Francia Raisa, 29, volunteered to donate hers. She wrote on Instagram that “there aren’t words to describe” how she can thank Raisa, who gave “the ultimate gift and sacrifice by donating her kidney.”
Photos were released on Instagram of the two women side by side in hospital and of Ms Gomez displaying a very large scar on her abdomen.
Despite the public relations frenzy, very little information has been released about the procedure. Whether Ms Raisa had been remunerated for the donation or what else might have motivated her donation is unknown. However, Ms Raisa’s mother, Virginia Almendarez, told the media that the actress did it just so that “Selena could have a better life” and that “not even a single penny” was exchanged.
Some surrogate mothers in California / Surrogate Alternatives
Two New Zealand academics have proposed a new model for handling surrogacy. At the moment, where surrogacy is allowed at all, it is either a private commercial transaction or an unpaid altruistic gesture. Liezl van Zyl and Ruth Walker, of the University of Waikato, have proposed a government-regulated system.
They want to see surrogacy move to a professional standing, legally regulated and with greater protection for intended parents, the planned baby, and the surrogate mother. It would not be about building a career, but recognizing the surrogate’s caring motives, and compensating her for her work.
“The Government needs to look at the current way of handling things,” says Dr Walker. “It is not in babies’ best interests, and there is no security for surrogates or intended parents.”
The two academics suggest in their new book, Towards a Professional Model of Surrogate Motherhood, that governments establish a kind of “Department of Surrogacy”. This new agency would ensure that demands made on the surrogate are reasonable; counselling is provided; the child has the right to have a relationship with the surrogate; and that the government sets the fee for the surrogacy.
Many patients require artificial nutrition and hydration (ANH) at the end of life. But what should medical staff do when a patient seeks to hasten death by having ANH withdrawn? Despite the ethical complexities of the situation, medical guidelines are vague and, in some cases, non-existent.
But the American Nurses Association has issued a new position statement that categorically endorses “voluntary stopping of eating and drinking” (VSED). In the statement, the ANA asserts that “VSED at the end of life is used to hasten death, and is a reflection of autonomy and the patient’s desire for control.” According to the Association, a patient’s decision to begin VSED should be respected by the nurses, as “patients who are at the end of life likely have reasons for stopping nutrition and hydration”. The Statement continues:
“[Reasons for VSED may include] physiologic causes that lead to loss of appetite and/or the inability to eat. Some people who choose VSED may not be imminently dying. Psychological, spiritual or existential suffering, as well as physical suffering, can lead to patient requests for hastened death.”
Nurses are instructed to continue “to ensure the provision of high quality care, minimizing discomfort and promoting dignity”.
Oxford University bioethicist Julian Savulescu penned a controversial article in 2013 that proposed VSED as an “ethical and legal alternative” to euthanasia in jurisdictions where euthanasia is still prohibited. The ANA guidelines are an endorsement of this suggestion.
The legal dispute over Jahi McMath -- a 13-year-old American girl alleged to be brain dead -- has received renewed attention after a Californian judge ruled she may in fact be alive. A county jury will soon hear new evidence that McMath is healthy, undergoing puberty, and is responsive to oral communication, despite her severe neurological impairment.
This week bioethicist Wesley J Smith weighed into the debate, calling for “Justice for Jahi”. Smith writes that has visited McMath in hospital, and feels there is evidence to suggest that she no longer meets the criteria for brain death. According to Smith, McMath appears to respond to requests from her mother to move her fingers, and video evidence suggests the girl is capable of other autonomous motory operations.
Smith called for a comprehensive expert review of McMath’s neurological state:
“I hope that several prominent neurologists without a stake in the situation will step forward and volunteer to examine Jahi—and not just for a day or two but over an extended period of time, to test her brain and body functions thoroughly and determine whether she does indeed respond to requests. Then, if she lacks even one criterion for brain death, Jahi’s California death certificate should be revoked—let the chips fall where they may.”
Regarding the relatively limited bioethical coverage of the McMath case, Smith remarked:
“I am stunned that the medical and bioethics communities generally show such a pronounced lack of curiosity about Jahi’s situation...Perhaps it is just a case of “experts” not wanting to know—because if Jahi isn’t dead, it would have epochal legal, social, medical, and scientific ramifications. But so what? Jahi deserves justice. If alive, she is a full and equal member of the moral community.”
A team of Oxford University researchers have been accused of deception and misconduct during a large-scale tuberculosis trial on African infants that began in 2009.
Professor Peter Beverley, a former senior academic at Oxford, told the BBC that scientists tested a new tuberculosis vaccine on more than a thousand infants without sharing data suggesting that monkeys given the immunisation “die rapidly”.
According to Beverley, the new vaccine, known as MVA85A, was trialled on six monkeys 10 months before a funding application was made for the clinical trial on over 2,800 babies near Cape Town, South Africa.
The preclinical monkey trial involved over a dozen monkeys who had been infected with TB. One group was given the widely used Bacillus Calmette-Guérin (BCG) jab (a standard immunisation), the second was given no immunisation and a third was given BCG plus new vaccine. By the time the human trials began, five out of six of those that received the BCG jab and the new booster vaccine together had to be put down, while just two out of the six monkeys who received only the BCG injection had died.
Despite this, an information sheet given to families in South Africa participating in the trial said the vaccine had been tested on animals and humans and was “safe and effective” in animals.
An inquiry at the University found that there had been no wrongdoing, though the report stated that it “would have been good practice for the potentially adverse reaction observed in the monkey experiment to be reported to the authorities in a more timely fashion.”