Saturday, November 22, 2014

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As I may have said before, I do not support assisted suicide. But I would like to understand it better. In this respect, I have found nothing better than a Swiss documentary about the work of Dr Jerome Sobel and his group Exit in the Francophone cantons of Switzerland.

Exit: le droit de mourir (Exit, the right to die) was made in 2005 and won a few prizes. I reviewed it some time ago and it always stuck with me. Earlier this year the director finally eleased it on YouTube (with subtitles). It is a stunning film with very subtle editing and brilliant photography. It is also quite disturbing as several people die before the unblinking gaze of the camera.

I was expecting ethical arguments in favour of assisted suicide such as terminal illness or unbearable pain. But to my surprise, his angle was that the accompagnateurs, the death escorts, are warm-hearted guardian angels who have a vocation to lead people into a better place. Sobel is depicted as a Christ-like figure; a board meeting is even framed as a Last Supper, featuring him surrounded by his 11 disciples.

Have a look for yourself, but my feeling is that a person with a vocation to help people die is a dangerous man or woman. Take Philip Nitschke, the recently suspended Australian doctor who informs people about how to kill themselves. He believes that he is crusading for human rights; he has been linked to a number of deaths. Sobel frames his work as a post-Christian work of charity. Perhaps that is why his organisation is pressing for access to Swiss nursing homes (see story here). They want to proselytise as many as possible.

This is one of the most dangerous aspects of legalised assisted suicide and euthanasia. It will be aggressively promoted by groups who feel that they have been called to kill.

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Michael Cook
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This week in BioEdge

2014-11-09 3:52 AM
Disabled girl allowed to die of dehydration in UK
by | Nov 15, 2014 |
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tags: England, euthanasia, terminal sedation

Nancy Fitzmaurice and her mother Charlotte   

How illegal are euthanasia and assisted suicide in England? The recent tragic case of Nancy Fitzmaurice suggests that judges are willing to make exceptions to the law.

Nancy was a 12-year-old girl with severe disabilities. Born in 2002 with a streptococcus infection, she was blind, had hydrocephaly and was unable to talk, walk, eat or drink.

Her mother, Charlotte Fitzmaurice, gave up her job as a a nurse and became a full-time carer. Nancy only reached a developmental age of about 6 months, but she was reasonably healthy and had defied predictions that she would only live to the age of 4.

However, two years ago a routine operation for kidney stones went wrong. Nancy was in round-the-clock untreatable pain, to the great distress of Ms Fitzmaurice and her partner.

With the support of London’s Great Ormond Street Hospital, she applied to have Nancy euthanased by withdrawing nutrition and hydration. The matter went to the Justice Eleanor King, of the High Court, who ruled on August 7 that it was in the mother and daughter’s best interests to withdraw food and fluids. “In her own closed world [Nancy] has had some quality of life. Sadly that is not the case now,” she said. It was the first time that a child who was not terminally ill and was not on life support was permitted to die in this way.

Nancy died on August 21 after great suffering. “The last day was the hardest of my life. It was absolutely horrifying,” Ms Fitzmaurice told the Daily Mail.

The case was not widely reported, but the policy followed by the hospital and approved by the judge had severe critics. The Autistic Self Advocacy Network, an American group, described it as killing a disabled person.

“Euthanasia of people with disabilities is an extremely dangerous and wholly inappropriate solution to inadequate pain management. In cases where painkillers are insufficient, a number of alternatives for pain management exist. A policy of euthanasia targets vulnerable people, particularly when it is applied to children. People with disabilities who experience chronic pain should have same access as others to life-sustaining medical treatment.”

Bioethicist Arthur Caplan, of NYU Langone Medical Center, was guarded in his assessment, but told The Daily Beast that he would have preferred to increase the level of sedation rather than allow the girl to die of thirst. 

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Nitschke battles to keep his registration
by | Nov 15, 2014 |
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tags: assisted suicide, Australia, euthanasia, Philip Nitschke

Philip Nitschke in Darwin / SMH    

There is a plethora of films about euthanasia and assisted suicide, but possibly none which takes place in a courtroom. However, a courtroom in the sweltering far north of Australia might provide an excellent script for an updated version of Inherit the Wind, pitting enlightened progressives against backwoods conservatives. 

The progressive would be Philip Nitschke, one of the world’s best-known euthanasia activists. He has been battling to retain his medical registration before Northern Territory Civil and Administrative Tribunal. His lawyer, Henry Nugent, is terminally ill with colon cancer and ardently supports supported Nitschke’s cause.

Representing the antediluvian Medical Board of Australia is barrister Lisa Chapman. The MBA regards Nitschke as a public danger.

The trigger for the hearing was a police investigation of the death of 45-year-old Perth man Nigel Brayley. He was a fan of Nitschke’s work and committed suicide with Nembutal, Nitschke’s drug of choice. Unfortunately for Nitschke, it turned out that Brayley was being investigated for murdering one, possibly, two wives. He may have been depressed; he certainly evaded justice. If Nitschke’s cavalier response to Brayley’s request for information is not enough for the MBA to deregister him, there are 11 other complaints about how he practices as a doctor.

Nitschke tried to turn the hearing into a trial of the notion of rational suicide. "I am arguing that every rational adult has the right to determine what they do with their own body... and that may include ending their own lives,” he told the ABC. “The medical profession should keep out of it; they are not a body that should be controlling options that rational adults take.”

Ms Chapman refused to broaden the scope of the hearing. “This is not a debate about voluntary euthanasia," she said. "It is not a debate about rational suicide. This is a very precisely focused interim hearing regarding Mr Nitschke's conduct into the death of a man. He obtained scant information about Mr Brayley before he died."

The debate is also about the extent of a doctor’s professional commitment. Nitschke supports a transactional relationship in which he is a doctor only when a person approaches as a doctor. Ms Chapman supports a vocational understanding. "You can't say that today I'm going to be a registered medical practitioner but tomorrow I'm not going to be," she said. "It's not a matter of saying I'm going to decide when I wear that hat. The legislative scheme is that you wear that hat all the time."

Nitschke, who spends most of his time nowadays in his work as the head of Exit International, an assisted suicide and euthanasia lobby group, sounds fatalistic about losing his credentials as a doctor. "I wish I had never met Nigel Brayley, frankly, given the amount of damage that brief encounter has done to me and the time and energy and money that it's consumed," he says. 

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Swiss canton forces nursing homes to host assisted suicides
by | Nov 15, 2014 |
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tags: assisted suicide, Switzerland

touring Neuchâtel     

The legislature of the Swiss canton of Neuchâtel has voted overwhelmingly to force government-funded nursing homes to allow representatives of assisted suicide groups to advertise their services.

(Neuchâtel is in the west of Switzerland, bordering on France, and is predominantly French-speaking.)

There are no exemptions for conscientious objection by managers in the homes. The only critierion, according to, is the personal choice of the patients. Personal autonomy must take precedence over the rules of the nursing homes. About 60 institutions will be affected by the decision.

The new regulations specify that nursing home personnel will not be allowed to interfere if a patient chooses to die. In fact, they are required to set aside a room where the staff of the assisted suicide organisation Exit will help the person to die. 

The law establishes some conditions for such procedures. The disease or condition must be serious and incurable and other end-of-life options must be discussed. If the nursing home refuses to cooperate, the patient can complain to the authorities. Only homes which do not accept government funding will be allowed to close their doors to Exit.

Exit (whose full name is Exit ADMD Suisse Romande) caters for French-speaking Swiss. Another group, called simply Exit, caters for German-speakers. Last year the French Exit began to offer its services to elderly people who did not have a terminal illness but wished to die. According to one report, it helped 155 people to die last year, and its German counterpart 459. Apparently nursing homes in the German cantons are far more amenable to visits by Exit. 

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Stunning video reveals mystical strain in Swiss assisted suicide
by | Nov 15, 2014 |
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tags: assisted suicide, euthanasia, Switzerland

Here is a video which is essential viewing for anyone interested in how Swiss assisted suicide groups work. Exit - Le Droit De Mourir (Exit: the right to die) is a prize-winning 2006 documentary. Unavailable until now, it was recently posted on YouTube.

The director, Fernand Melgar, spent two years filming the work of the Francophone group Exit. He shows an annual general meeting, secretaries answering phone queries, a conference of Exit societies in Japan, a board meeting and discussions with clients. Most astonishing of all, he films the last moments of a woman who chose to die on January 22.

The photography and editing are breath-taking. One impressive detail: from across the street he films undertakers manhandling a gurney with the woman's body into their van. Cars pass in the drizzle. Suddenly there is a movement in a window of the block of flats, the reflection of a train behind the camera whizzing into the distance. It is an emblem of Micheline’s soul beginning her trip into the unknown...

But the focus of the documentary is on the accompagnateurs, the escorts. They ensure that the client is making a free choice to commit suicide. They patiently reassure them as they slowly make up their minds. They provide the lethal barbiturates and witness the deaths. It is depicted as heart-rending, exhausting work.

What strikes an English-speaking viewer as odd is the complete absence of controversy. Ethical discussions centre merely on justifying Exit’s reluctance to get involved in some cases. The escorts are over-stretched and weary; there are so many people who want to die and they cannot possibly help them all. 

But the escorts press on. Their work is, as their president, Dr Jérôme Sobel, reminds them, not a task, but a “vocation”. (He was recently re-elected president of Exit.) Indeed, their involvement is clearly a deep religious commitment. In an extraordinary sequence, Melgar films a board meeting.  In a soft golden glow, twelve escorts sit around a U-shaped table on both sides of Dr Sobel in a clear evocation of the Last Supper. “You are no longer volunteers, but priests,” Dr Sobel tells them.

The religious dimension is heightened in the quasi-liturgical language with which the saintly figure of Dr Sobel farewells Micheline. Over and over again he poses the question: do you do this freely? -- to which she murmurs again and again Oui, Oui, Oui... “May the light guide you and lead you to peace,” he tells her. “Bon voyage, Micheline.” And she falls asleep.  

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UK conference studies reality of Belgian euthanasia
by | Nov 15, 2014 |
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tags: Belgium, euthanasia

Kevin Chalmet before his death from euthanasia    

Brittany Maynard, the American woman who announced the date of her assisted suicide through YouTube, has been a media sensation in the US and around the world. In Belgium, the news would have barely made page 4 or 5 in local newspapers. Chronicles of deaths foretold are so common that they have shrunk to 3 or 4 paragraphs.

This week a 34-year-old fireman suffering from a rare brain tumour, Kevin Chalmet, was euthanased. He invited everyone to bid him farewell, but only his girlfriend, parents and sister were there at the end – and a well-known local comedian and cartoonist who sketched his death agony from a corner.

It is the routine aspect of Belgian euthanasia which disturbs local and international observers. Early in November a conference at St Mary’s University, London, brought together experts to discuss the phenomenon. Here are a few of the highlights, pending publication of the proceedings.

Oncologist Benoit Beuselinck, of Belgium’s largest cancer centres, discussed the impact of euthanasia legislation on cancer specialists. Since the underlying cause of 73% of euthanasia cases is cancer, oncologists receive the most euthanasia requests. Bioethicist Chris Gastmans, discussed euthanasia of persons with severe dementia based on their advance directives.

Scottish bioethicist Calum MacKellar conducted a “horizon scanning” exercise to guess what consequences the normalisation of euthanasia will have in Belgium. Trevor Stammers studied a trend in combining transplants of vital organs with euthanasia. Some experts have argued that there is a moral imperative to dispense with the dead donor rule in some cases. Though the numbers are small, a quarter of lung transplants after cardiac death currently come from euthanasia donors.

Bioethicists Sigrid Sterckx and Kasper Raus reported on the use of continuous sedation. In Belgium, patients tend to be deeply sedated with no intention to wake them up again, and medical staff sometimes organize an official goodbye for relatives just before sedation is initiated. Unlike euthanasia, continuous sedation is not regulated and is not officially reported.  This raises concerns about whether Belgian physicians are using continuous sedation to avoid onerous paperwork.

And Stefaan Van Gool, a paediatric neuro-oncologist, returned to the controversial issue of euthanasia for children. How will their mental capacity be assessed? How will undue pressure be avoided? How can the law be reconciled with the idea that impulsivity is only fully controlled after 20 or 25 years?

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Fatherhood: superannuated or evergreen?
by | Nov 15, 2014 |
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tags: fatherhood, IVF, sperm donation

Has sperm donation made the status of fathers obsolete? Several items popped up in the media this week which give different answers.

NOPE: fatherhood is a primal urge. Hollywood identity Jason Patric has won a two-year legal battle to become the legal father of the child of former girlfriend and massage therapist Danielle Schreiber. The pair separated acrimoniously after Ms Screiber had conceived an IVF son with Mr Patric’s sperm. She then claimed that as a sperm donor he had no parental rights. He fought this in the courts, in the media, in the state legislature and on the internet. Now he has won.

NOPE: fatherhood is overwhelming. In an extraordinary story from Australia which was reported around the world, a woman who used an anonymous sperm donor to conceive a child ended up marrying him. Now Hollywood is interested in filming the story. After using a sperm donor who described himself as "happy and healthy", Aminah Hart, a single woman, gave birth to Leila. Shortly after her daughter’s first birthday, she contacted the donor, who turned out to be a farmer, Scott Andersen. He was besotted with the little girl who looked so much like him and the couple fell in love.

"Maybe we're rushing it. Who knows? We've both got a track record of marriages that have ended, says Ms Hart. “As Scott said, ‘I've got five kids to three women and you've got three kids to three men!' But it just feels right – I feel very certain of that. None of this has been at all conventional. We certainly are a very modern family."

KINDA SORTA: genes do count. An odd article in The New Republic describes the feelings of Stephanie Fairyington and her wife Sabrina as they sought for a sperm donor. When the lesbian couple started feeling broody, Stephanie suddenly realised that she wanted this child to carry her own genes. She asked her recently-divorced brother to be a sperm donor, but it turned out that he had had a vasectomy. “I still can’t adequately express the sadness I continue to feel when I realize that I’ll never look at a baby born of both of us. Instead, I will be looking at half of a man I don’t know, a stranger. I wish I could say that I’ve evolved from the selfish, animal longing to forge a bloodline with Sabrina, but I’m not there yet.”

YUP: men, who needs ‘em? Lucinda Bird, 38, conceived her daughter Raphael with the help of a Danish sperm donor who does not mind becoming contactable when the child turns 18. She didn’t see any particular reason why she needed a father to become a parent. “I had my parents and close friends to celebrate with, and it never occurred to me that I should share this with a man. 'While I'm certainly not a man-hater, I know what's right for me. I didn't want to trick some guy into having a baby. This seemed a more honest way of creating my family.”

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Distinguished doctor arrested over Indian sterilisation tragedy
by Xavier Symons | Nov 15, 2014 |
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tags: India, negligence, sterilizations

Thirteen women have died following a series of unhygienic sterilization operations in an Indian birth control clinic.

The women, who attended a sterilization camp in the central Indian state of Chhattisgarh, were operated on in a poorly maintained operating theatre with unsterilized equipment, authorities said.

Dr R.K. Gupta, who once received a state honour for his sterilization work, has been arrested on charges of negligence. Gupta denies any misconduct and has blamed authorities for the tragedy. “It is the administration which is responsible for this incident”, he said. "If they kept in that place 83 women, it is my moral responsibility to operate (on) all the women.”

Gupta sterilized all the women in the clinic within three hours, taking between two to five minutes per operation.

India regularly conducts sterilization drives, and mass sterilization camps are most common in the poorest Indian states. The Chhattisgarh tragedy is not an isolated event. Official records show that 1,434 people died from sterilization procedures between 2003 and 2012. 

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Disabled children kept in cages in Greek childcare centre
by Xavier Symons | Nov 15, 2014 |
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tags: disability, human rights

Disability rights groups have condemned the inhumane treatment of disabled children in Greece, after it was revealed that at least one disability-care facility is keeping its residents in cages. 

Current and former volunteers at KEPEP Childcare Centre, a facility in the southern town of Lechaina, recently spoke out about the mistreatment of residents.

Some 60 children in the home are kept in ceiling-high cages, routinely given sedating medication and sometimes strapped to their beds. In a damning report published in 2010, Greece’s ombudsman for the rights of the child labelled the practices “violations of human rights”. 

It is unclear whether any other facilities in Greece use these methods.

The staff of KEPEP say they lack the funds to improve conditions. “We are doing everything we can but we do not have the resources to give anything else”, said Gina Tsoukala, the director of the centre.

But disability rights groups say this is no excuse. “Being kept in a cage is seriously detrimental to the psychological health of patients, has no therapeutic value and can actually be physically dangerous,” said Steve Allen of The Mental Disability Advocacy Centre.  

Ironically, there is a dormant state of the art disability care facility quite close to KEPEP. The Greek government says it unable to afford staff to operate it.   

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Where do we draw the line on bioehancement?
by Xavier Symons | Nov 15, 2014 |
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tags: disability, human bioehancement

A new American documentary examines the ethical issues surrounding human enhancement for people with disabilities. The documentaryFIXED, contains interviews with a range of physically impaired people, as well as specialists in bioehancement. It presents an exciting picture of technological advance, while at the same time giving voice to scepticism and concerns. Overall the documentary presents the bioehancement project in a favorable light. Some may disagree with its conclusions, but it is a resource for understanding the ethical issues surrounding emerging enhancement technologies. 

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Is it ethical to grow human organs in pigs?
by Xavier Symons | Nov 10, 2014 |
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tags: chimeras, genetic engineering, organ transplants

Recent experiments with growing chimerical organs in animals have delivered favourable results. Japanese researchers recently managed to grow different nascent rat organs in mice using pluripotent stem cells. Researchers believe it could soon be used to grow human organs. 

Amidst the enthusiasm of the scientific community, four bioethicsts from the Universities of Maastricht and Basel have explored the bioethical complexities of the matter. In a Journal of Medical Ethics article released this week, they consider whether the process is comparable to the creation of complete human/non-human chimeras.  There has been significant moral debate over the latter, and similar arguments could be used against the former. As the authors state,

“Injecting human PSCs into animal embryos could theoretically risk the resulting animal itself developing human physical or mental features such as human limb development or neuronal development.”

Ultimately, they claim, such concerns are unfounded. There is a morally relevant difference between a mere organ and a chimera that has "human neuronal (or reproductive)" capacities: 

“In the absence of any adverse consequences, objections based on human dignity are deprived of most of their force.”

There are also attendant concerns about the possibility of zoonosis, the interspecific transmission of viral or bacterial disease. Whilst certain aspects of the proposed procedure minimise this risk, there is nevertheless still some risk. 

“A deadly zoonosis could theoretically kill millions of people, and one might question whether the benefits of creating a new source of organs is worth outweighing the potential harms flowing from even a small risk of zoonosis.”

In their conclusion, the authors assert: “More research is required in order to clarify several uncertainties about viability and safety, and several concerns remain regarding the human features problem, animal welfare and human dignity.”

The overall tenor of the article is nevertheless quite positive. As Dr. David Shaw stated in a recent blog post, "While this source of organs is not entirely without risks, we believe that they are worth taking."

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IVF and depression: a long discussion continues
by Xavier Symons | Nov 10, 2014 |
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tags: depression, IVF

There has been much debate about the impact of IVF on a mental health. A recent article in the Guardian considers this question in a personal context.

In a letter to lifestyle columnist Annalisa Barbieri, an anonymous reader anxiously describes the situation of her daughter (in her “early 40s” and single) who is considering IVF treatment.

The reader’s daughter is a busy professional who has battled depression for some time. The reader asks Barbieri about the potential impact of her daughter’s decision, considering the various psychological factors at play.

In a direct reference to woman’s depression, Barbieri wonders whether her mental state is a motivating factor for considering IVF. Trivially, Barbieri remarks: “depending on the cause of the depression, having a baby could have an impact on your daughter’s mental health.” In rather non-committal response, Barbieri comments: “Some decisions have no right or wrong answer and take a lot of working out. This is one such”.

Barbieri’s response is in stark contrast to the strong opinions expressed by some fertility experts. In a recent blog post Rachel Gurevich, an author who has written multiple award-winning books on fertility, answers the question, ‘will pregnancy cure depression?’. Gurevich comments: “this isn't always the case. In fact, those who have experienced infertility are more likely to feel depression during pregnancy and are at an increased risk for postpartum depression.” 

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Michael Cook
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