One of Australia’s most renowned bioethicists died in Melbourne this week, nearly 40 years after he was diagnosed with a terminal illness. Nick Tonti-Filippini was 58. He suffered from chronic rheumatoid auto-immune disease which led to serious complications with his kidneys and heart, in addition to many other problems.
Nonetheless, he was a staunch and perceptive opponent of euthanasia. In an open letter to an Australian politician, he wrote:
“I cannot speak for all people who suffer from illness and disability, but think I can speak more credibly about suffering, illness and disability than those people who advocate for euthanasia presenting an ideological view of suffering and disability. Facing illness and disability takes courage and we do not need those euthanasia advocates to tell us that we are so lacking dignity and have such a poor quality of life that our lives are not worth living.”
But Nick was a highly competent professional bioethicist rather than a political campaigner. He was a member of the Australian Health Ethics Committee of the National Health and Medical Research Council and chair of sub-committees on the Unresponsive State and Commercialization of Human Tissue. He was much sought after as a consultant bioethicist by government bodies, including UNESCO, the US Congress and the German government.
Nick taught bioethics at the John Paul II Institute for Marriage and Family in Melbourne and was a devout Catholic. But the supervisor of his Master’s degree at Monash University was the world-famous utilitarian ethicist Peter Singer. It is hard to imagine men with two more different world views, but he used to speak warmly of Singer. “Peter has a great sense of humour. He’s quite unlike his public image, where he’s always looking for an argument,” he told The Age. He regarded some of Singer’s ideas as evil, but advised people not to confuse the ideas with the man. “Peter’s principles don’t touch Peter’s emotions. They are two separate things.”
Nick was a model of sober intellectual rigour and generosity of spirit. From time to time I used to seek his advice for background information. He always responded quickly and in great depth. He is a great loss for Australia and for bioethics.
There can be no more persuasive explanation than an attractive, intelligent young woman with tears trickling down her cheeks. As she dabs at her eyes, the trembling words always sound heart-piercingly right. Perhaps from an evolutionary perspective, we’re programmed to agree with her, because young women are meant to transmit life.
It’s the tears that sweep us away in the videos which Brittany Maynard has made with assisted suicide activists at Compassion and Choices, not the ideas. With more than 9 million hits on YouTube, it must have been the best-ever advertisement for right-to-die lobby. The ideas are pretty shop-worn. Marcia Angell, a campaigner for assisted suicide and a former editor of the New England Journal of Medicine, puts them in a nutshell in a recent Washington Post op-ed: “people are increasingly asking why anyone — the state, the medical profession, religious leaders — would presume to tell someone else that they must continue to die by inches, against their will.”
Laws must be changed, in other words, to support Brittany's absolute autonomy. But if this is the case, isn’t it discriminatory to restrict this to the terminally ill? Why not lovelorn teenagers or impecunious grandmothers? It's a blindingly obvious objection which is not refuted in the video.
Ironically, tears were used by the Nazis to persuade Germans to support assisted suicide. Brittany’s beautiful wedding photos, her artfully scripted message, the lachrymose piano chords, her family's words of love and support -- they all remind me of a competent 1941 German melodrama called Ich Klage An (I Accuse). The beautiful young wife of a doctor begs for release before she becomes “deaf, blind, idiotic”; the family doctor refuses; her husband obliges. In a final speech to the jury her grieving husband accuses the law of being inhumane.
It seemed like a good argument then; it seems like a good argument now. A big problem though, in both cases, is what comes afterwards…
Thankfully Brittany has decided that life is still too good to say farewell. She wants to live and she has cancelled today’s rendezvous with death. She is a beautiful, intelligent woman. I hope that she sticks around for a lot longer.
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Helping patients with dementia will probably be one of the biggest human dignity issues of our century, as the proportion of elderly grows across the globe. It seems disgraceful to warehouse them in nursing homes, but often there are few alternatives.
So I was really delighted to see a ray of light in a new documentary, Alive Inside, which won the 2014 Sundance Film Festival Audience Award for an American documentary. It features the power of music to raise patients out of their torpor. Sometimes the effect of placing earphone and an iPod on an unresponsive patient slumped in a wheel is little short of miraculous.
One wonderful clip from the film features Henry, who spends his days in an almost catatonic state in a 600-bed nursing home. But once he began to hear the music from a favourite artist of his youth, Cab Calloway (famous for “Minnie the Moocher”), he begins to answer questions, his eyes light up and he even gives a short speech:
“It gives the feeling of love, romance! I figure right now the world needs to come into music, singing. You’ve go beautiful music here. Beautiful. Lovely. I feel band of love, of dreams. The Lord came to me, made me holy. I’m a holy man. So he gave me these sounds.
The film also critiques over-reliance on anti-psychotic medications for demented patients. “What we’re spending on drugs that mostly don’t work dwarfs what it would take to deliver personal music to every nursing home resident in America,” says Dr Bill Thomas, a gerontologist and advocate for long-term care reform. “I can sit down and write a prescription for a US $1,000 a month antidepressant, no problem. Personal music doesn’t count as a medical intervention. The real business, trust me, is in the pill bottle.”
Obviously iPods and Cab Calloway playlists alone will not turn dementia around; the issue is far more complex than this. But this uplifting documentary at least shows that some simple solutions work.
I was delighted to see the Nobel Peace Prize go to Malala Yousafzai, of Pakistan, for her work in advocating education for girls, and Kailash Satyarthi, of India, for protesting against child slavery and bonded labour.
Perhaps the prize panjandrums are getting closer to what may become one of the big human rights of the first half of our century: commercial surrogacy. This week the Australian media uncovered yet another surrogacy scandal after the Baby Gammy case. This time a couple abandoned a twin in India because it was the “wrong” sex. Apparently a senior politician leaned on Australian consular staff to expedite the adoption – and the abandonment.
In the murky world of commercial surrogacy the rights of the children and the mother are clearly at risk. Two senior Australian judges have now called for a national inquiry. "I've spent many sleepless nights. I've heard things and I've seen things that I really don't think anyone should see ... and I find it deeply distressing that nothing is being done about the issue," says the Chief Judge of the Federal Circuit Court, John Pascoe.
“Surrogacy undermines the human dignity of the woman carrier as her body and its reproductive function are used as a commodity … The unregulated nature of surrogacy poses additional concerns regarding the exploitation of women in disadvantaged positions and fertility tourism resulting in a black market of ‘baby selling’.
“The practice of surrogacy also disregards the rights and human dignity of the child by effectively turning the baby in question into a product. The Convention on the Rights of the Child declares that children have a right to be protected from abuse or exploitation and calls on States to act in the best interest of the child. Surrogacy arrangements turn the baby into a commodity to be bought and sold. Moreover, surrogacy manipulates the identity and parentage of children and robs them of any claim to their gestational carrier, which recent research points to being harmful to the development and wellbeing of the baby.”
I hope that the Nobel Peace Prize committee is listening.
Dr Philip Nitschke, Australia’s leading advocate for euthanasia and assisted suicide, was recently suspended (but not deregistered) after his involvement in the suicide of a man suspected of murdering two of his wives. This has not stopped Dr Nitschke from campaigning. In today’s issue of The Guardian, he makes a passionate case for allowing prisoners to choose euthanasia rather than linger in prison with a life sentence.
“Imprisonment for life, with no hope of parole, is torture. I thought then and now that a modern civilised Australia should not be involved in torture, no matter the crimes of the prisoner.”
Dr Nitschke has been very impressed by the progressive policies of Belgium, where a judge recently allowed a prisoner to choose euthanasia. “Under the Belgian model, physical or psychological suffering that is incurable or constant can be the grounds for voluntary euthanasia. What is there not to agree with?” he writes.
His facts, for starters.
The case of the Belgian rapist and murderer, Frank Van Den Bleeken, illustrates much of what is wrong with Nitschke’s argument. Strictly speaking, despite his horrific crime, Van Den Bleeken was not a prisoner but a patient. He was being held “at the Governor’s pleasure”, as Australian law quaintly puts it, because he was mentally ill and a danger to society. Belgium’s dysfunctional mental health system was unable to treat him, so Van Den Bleeken applied to be transferred to a Dutch prison with advanced treatment for sex offenders. When the Belgian government refused, Van Den Bleeken requested euthanasia.
In short, Van Den Bleeken’s suffering could have been cured, but it was either too expensive or too much bother for the Belgian government. As with most cases of euthanasia or assisted suicide, the real problem is that society has tossed its most vulnerable citizens onto a scrap heap. And, as Dr Nitschke has kindly demonstrated, the best way to defend this option is to twist the facts out of shape.
Sorry, folks, no folksy message this week. Instead, we have something far more fun: our annual online survey, which we have not actually run for the last two years. Since then our subscriber list has grown and bioethics is on the front page more than ever.
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Are bioethicists more ethical than the rest of us? I’m not aware of data about bioethicists as such. However, some research has been published about moral philosophers, of which bioethics is a sub-discipline. One study found that ethics texts were more likely to be missing from academic libraries than non-ethics books in philosophy.
A couple of other studies found that ethicists behaved no more courteously than non-ethicists and that they were just as likely to avoid paying registration fees as non-ethicists at conferences of the American Philosophical Association. And last year, the world was shattered by the scandalous news that moral philosophers were no more likely to respond to student emails than other kinds of philosophers.
It is a bit disappointing to learn that bioethicists probably land in the middle of the Bell curve in terms of everyday ethical behaviour. But do they still have special ethical obligations? An interesting article in the latest issue of the Cambridge Quarterly of Healthcare Ethics argues that they do. Bioethicists are supposed to be whistleblowers.
D. Robert MacDougall, of New York City College of Technology, argues that they have “a heightened obligation to whistleblow”. Not because bioethicists are obliged by virtue of their professional training to be saints – they aren’t. But because “the condition of that employment is the widely held supposition that bioethicists do not ultimately defer to an employer’s determination about acceptable risks, but rather that they exercise independent judgment on these matters”.
In other words, society expects that bioethicists will make up their minds without fear or favour.
Does this actually happen? Dr MacDougall references a 1996 article in the Journal of Clinical Ethics, “Where are the heroes of bioethics?” The author’s opening sentence was “Here is my problem: I don’t know of a single case of a bioethicist who has acted as a hero in that role.” Have things changed since then? Are there any nominations for bioethical heroes, people who have risked life, limb or employment to fulfil their responsibilities?
My Latin is not what it once was and it was never much. All I can remember is classic phrases like Caesar ad sum jam forti, Brutus et erat; Semper ubi, sub ubi; and Illegitimi non carborundum. So lately I have been making amends for schoolboy sloth by reading a few of the classics. I have just finished (and highly recommend) The Annals of Imperial Rome, by Tacitus, which chronicles the years of Tiberius*, Claudius, Caligula and Nero. Tacitus would have made a good op-ed writer on the New York Times, with his sardonic analysis of palace politics.
Whoa! Excuse me: just where is all this going? Will we get bioethics or just bloviation?
Well, sort of. Let me press on.
It was a bit dismaying to read how determined the Emperors were to pass on their power and prerogatives to their children -- but how little they did to produce them. Augustus had no sons and adopted Tiberius, his step-son by his third wife. Tiberius was succeeded by an adopted grand-nephew, Caligula, and the odious Caligula by his uncle, Claudius. Claudius’ only son died in his teens and so he was succeeded by the perverse and capricious Nero, the adopted son of his fourth wife. As the Romans would have said, contortum est, it’s complicated.
Is it drawing too long a bow if I see a parallel in the couplings of our own era?
Below we report on services provided by EggBanxx, a new company in Manhattan which freezes eggs for socially infertile single women. Reading between the lines, you can feel the pain of its over-achieving clients, who are mostly in their early or mid-30s and desperate to bring at least one child into the world before their biological clock stops ticking. Behind them may be two or three relationships; ahead is loneliness. The statistics say that most of them will fail.
Like the emperors of Rome, the yuppies of Manhattan have nearly all the autonomy they like. Autonomy is the cement of most contemporary bioethical frameworks. But just as it brought little joy to the emperors, it fails us as well. There must be something more to ethics.
2014 marks 2,000 years since the death of Augustus. You would think that two millennia of technological, educational and social progress would have raised the level of our romantic relationships as well as our standard of living. It seems not.
* Sorry, I wrote Domitian originally, instead of Tiberius.
BioEdge passed a milestone this week – our 10,000th subscriber. We are delighted that so many people receive the newsletter and pass it on to their friends. Word of mouth is the best advertising!
However, we feel that our potential readership is really many times this figure, so please encourage friends and colleagues to sign up. It’s free! If you are teaching bioethics at a university, why not suggest that your students subscribe? It will give them lots of stimulating ideas to ponder.