Lord Falconer reveals that his ‘Assisted Dying Bill’ effectively places doctors above the law

Lord Falconer’s Assisted Dying Bill (detail here), which aims to legalise assisted suicide for mentally competent adults with less than six months to live and a 'clear and settled intention to end their lives', had its first reading in the House of Lords last May. 

It is due to return for a second reading (debate stage) in Spring 2014.

In an interview for Pulse magazine today Lord Falconer (pictured) was asked if GPs were likely to get into trouble with the police for authorising assisted suicide under his proposed bill should it ever become law.

His answer was quite revealing.

He said that the bill would make it ‘very difficult’ for GPs to face any proceedings in court as long as it was ‘their genuine view’ that this was the patient’s position.

He said: ‘Of course they have to give their genuine view, and of course they have to take reasonable care in relation to it, but as long as they do that they would have absolutely nothing to worry about. It would be no different to any part of their practice as general practitioners.’

In other words, it is not necessary for the patient to be mentally competent, at least 18 years old,  with less than six months to live or with a settled wish to end his or her life. All that is required is for the doctor to say that it is his 'genuine view' that these conditions apply and no court will be able to touch him.

Falconer’s draft bill has already attracted serious criticism because of its paper-thin safeguards.

But little attention has so far been given to the power it grants to doctors and the way it effectively places them above the law.

By licensing doctors to dispense lethal drugs it actually adopts an almost identical model to that of the Abortion Act 1967. Under this Act an abortion is regarded as ‘not unlawful’ providing two doctor sign a statement ‘in good faith’ that one or more of a list of statutory conditions apply.

But we all know in practice that the Abortion Act is widely flouted.

Doctors in fourteen NHS Trusts were recently found to have pre-signed forms authorising abortions without ever having seen the patients in question, in fact before they even turned up at the clinic.

Others authorised abortions solely on grounds of sex selection when this is in fact illegal. The fact that these doctors were not prosecuted aroused huge outrage.

But most significantly of all, 98% of abortions are carried out on grounds that the mental health risks of continuing with the pregnancy outweighed those of having an abortion, when in fact there is no hard evidence to suggest that this is ever the case.

This state of affairs has led to over 200,000 abortions being carried out in Britain each year of which 196,000 are technically illegal, but for which no doctors are ever prosecuted. Doctors authorising or carrying out abortions are, in other words, effectively above the law.

Falconer seems to be suggesting that the same rules will apply to assisted suicide under his bill.

His bill, should it ever become law, will thereby effectively place doctors above the law. All they will have to do, for any given case, is to say that it was their ‘genuine view’ that the conditions applied and no court will be able to touch them. In Falconer’s own words, they will have ‘absolutely nothing to worry about’.

Can we imagine any other group being given this level of professional freedom by an Act of Parliament? Can we imagine, for example, a motorist avoiding prosecution by arguing that it was his ‘genuine view’ that he was not exceeding the speed limit? Or a policeman pleading that it was his ‘genuine view’ that the innocent man he just shot was a wanted criminal? Or a politician saying that it was his ‘genuine view’ that he was not fiddling his expenses? Such a position in any other circumstances would make a mockery of the law.

If Falconer’s bill actually does what he claims it does it will be both unworkable and unenforceable. All a doctor will need to do to extend its provisions will be to argue that it was his ‘genuine view’ that a demented patient was mentally competent, that a disabled person had less than six months to live or that a 15 year old was really 18.

The so-called ‘safeguards’ in Falconer’s bill are bad enough. It is already ripe for abuse and incremental extension. But the power and lack of accountability it grants to doctors will make them the most dangerous people in the state.

Resolution promoting abortion, undermining conscience and perverting sex education gets short shrift at European Parliament

The European Union voted last week to deny acceptance of a draft report which would have established abortion as a human right, and simultaneously squelched conscientious objection as well as established a perversion of sexual education for children.  

In a resounding victory for common sense, following a short but lively debate in the European Parliament, a majority of MEPs voted to refer the highly controversial resolution on the Estrela report back to the Committee on Women's Rights and Gender Equality.

The resolution on Sexual and Reproductive Health and Rights was presented by Portuguese MEP Edite Estrela (pictured) but her report is said to be the work of the International Planned Parenthood Federation in Brussels.

The fact that it has been referred back to committee implies, that a revised report cannot not be presented until early next year, thus, limiting the time available to the Parliament to deal with it, prior to the next European elections. In other words, this rejection may well be a fatal blow stopping the report’s progress.

The Estrela report  bemoaned the fact that many physicians even in Europe, refuse to participate in abortions:

‘There are cases reported from Slovakia, Hungary, Romania, Poland, Ireland and Italy where nearly 70 per cent of all gynaecologists and 40 per cent of all anaesthesiologists conscientiously object to providing abortion services… These barriers clearly contradict human rights standards and international medical standards.’

It also recommended that member states:

‘regulate and monitor the use of conscientious objection so as to ensure that reproductive health care is guaranteed as an individual’s right, while access to lawful services is ensured and appropriate and affordable referrals systems are in place’.

In addition to the war on rights of conscience, the defeated measure sought to establish abortion as a human right:  ‘[as a human rights concern, abortion should be made legal, safe and accessible to all’.

And finally, the report recommended that member-states ensure compulsory sex education consistent with the recommendations of the report by the WHO in 2010.  More information about the content of the sexuality standards is available here. I quote:   

‘(The European Parliament) calls on Member States to ensure compulsory, age-appropriate and gender-sensitive sexuality and relationship education, provided in a mixed-sex setting, for all children and adolescents (both in and out of school).’

The standards for sex education referred to include these:

‘ Children aged 0-4 should be informed about: “enjoyment and pleasure when touching one’s own body”, “early childhood masturbation”, “different family relationships”, “the right to explore gender identities”, “the right to explore nakedness and the body, to be curious”, etc. and they should develop “curiosity regarding own and others‘ bodies” and “a positive attitude towards different lifestyles”.’

‘Children aged 4-6 should be informed about “enjoyment and pleasure when touching one’s own body”, “early childhood masturbation”, “same-sex relationships”, “sexual feelings (closeness, enjoyment, excitement) as a part of all human feelings ”,“different kinds of (family) relationship”, “different concepts of a family”, and should develop “respect” for those different lifestyles and concepts.’

‘Children aged 6-9 should go on learning about “enjoyment and pleasure when touching one’s own body (masturbation/self-stimulation)”, but they also should be informed about “different methods of conception” and “the basic idea of contraception (it is possible to plan and decide about your family)”.’

‘Children aged 9-12 should be informed about “first sexual experience”, “orgasm”, “masturbation”, and should learn to “make a conscious decision to have sexual experiences or not” and “use condoms and contraceptives effectively”.’

The standards differentiate between ‘minimum’ and ‘optional’ achievements, but masturbation at age 0-4 is mandatory. In short, this is a programme for sexual initiation beginning at toddler age, and one seriously has to ask oneself whether this kind of sexual education is not in fact a form of systematic and structured child abuse, albeit under a pretext of ‘education’ or ‘skill development’.

There is a conspicuous absence of any genuinely moral attitudes towards sexuality that should be transmitted to the child: no reference to chastity, no reference to conjugal fidelity, only a vague sense that ‘everything is ok if it feels good, is consensual, and doesn’t entail an unwanted pregnancy’.

That attitude, however, appears to be compulsory in the sense that it would appear to be in violation of these ‘Standards’ if parents attempted to transmit to their children any genuine (and in particular Christian) moral values related to sexuality.

We can be hugely thankful to those who were alert to this measure and lobbied so effectively to defeat it. It was a rare victory but a reminder that the price of freedom is eternal vigilance. For now, at least, children both born and unborn, have been protected from a great deal of harm.

I’m grateful to both AAPLOG and Patrick Buckley for this report

Some brief Christian reflections to mark the birth of 5 million children by IVF

Over 5 million children have been born through IVF. The figure comes from a study, the first of its kind, into IVF statistics from countries around the world.

According to Bioedge, Researchers scoured government archives for information about how many women had used the procedure since its introduction and estimated that 900,000 children had been born after IVF in China alone.

Of all children in the world born by IVF, an astounding one-third of these children have been born in the past six years.

A lot of this has to do with increased success rates. IVF has enabled babies to be born to couples who would not otherwise have been able to conceive.

But on the other hand IVF has also opened what many regard as a Pandora ’s Box of genetic engineering, cloning, pre-implantation diagnosis, embryonic stem cell harvest and animal-human hybrids. 

The demand has also been fuelled by the rising levels of infertility which are exacerbated both by sexually transmitted disease (leading to tubal damage) and women delaying attempting to have children until such time as their natural fertility starts to drop off. Women wrongly assume that IVF is a good fallback solution when in fact the success rates are 40-50% for the under-35s, dropping to 20% for the under-40s and just 5% for women aged up to 43.

There are over two million infertile couples in the UK (one in seven) and infertility can carry real stigma. Infertility can result from defects in the production, release or transport of egg or sperm and successful treatment depends on accurate diagnosis. The range of treatments and their speed of development is bewildering, and not all couples need IVF: other common treatments include artificial insemination (AI), intracytoplasmic sperm injection (ICSI) and gamete intra-fallopian transfer (GIFT).

In IVF (in vitro fertilisation), sperm and eggs are brought together in a petri dish, and resulting embryos are then transferred into the womb. There is a high failure rate (75-85% per cycle overall) and the treatment costs of £2,500 per cycle will exhaust the resources of many of the couples who are unable to get NHS treatment. As highlighted just last week a couple is likely to have spent something of the order of £15,000 for the three cycles it is likely to have taken should they be fortunate enough to become pregnant. IVF heartbreak is real.

The emotional roller coaster of raised hope and dashed expectation is another important cost to be counted; but I believe the most important decisions Christians need to make involve honouring embryonic life and upholding the marriage bond. We should not seek a child at any cost (Romans 3:8).

Some IVF programmes involve the production of spare embryos, which are then used for research, disposed of, or frozen for future use. Freezing compromises embryo survival and there is a high chance that frozen embryos will never be used. Other programmes involve screening out embryos or fetuses with congenital disease either before implantation or later in pregnancy.

Our society thinks that because human embryos are small, weak and physically insignificant they are expendable. But this is at odds with the God’s loving grace, which sees even the weakest of human beings as precious, and worthy of wonder, love, respect and protection.

The other key question to consider is whether the use of donated eggs or sperm somehow violates the marriage relationship. Clearly using donor gametes does not involve sex outside marriage nor the cheating nor lust aspects of an adulterous relationship.

But marriage is a spiritual, emotional and physical union in which two become one and donor eggs or sperm inevitably introduce a third person that will be genetically related to the child, but play no part in their upbringing. And the child will be biologically related only to one, or perhaps neither of his or her parents.

So my own guidance is that prospective parents considering IVF should carefully count the economic and emotional cost and seek treatments that both respect the human embryo and also honour the marriage bond.

Some infertile Christian couples will go on to conceive, either naturally or with ethical infertility treatment, after a period of waiting. But this does not happen for all, and God in his wisdom has left some couples childless despite good treatment and patient prayer. 

Perhaps this is to ensure that there are couples with a strong desire to be parents, who can either adopt children, serve others’ children in some way or be freed up for some other special purpose which God has for them.

These comments are based on a longer article in Nucleus, which can be accessed here

Those wanting a more in depth review of the issues can’t do much better than Fertility and Faith by Brendan McCarthy (IVP, 1997, ISBN: 0851111807)

The Evangelical Alliance Home for Good campaign on adoption and fostering is well worth supporting. 

See also 'A new IVF milestone' by Philippa Taylor

Two huge court victories thwart legalisation of euthanasia in Canada

This last week has seen two huge court victories in Canada for those seeking to protect vulnerable people from having their lives intentionally ended.

In the first the British Colombia Court of Appeal overturned a lower court decision in the Carter case, and in the second the Supreme Court of Canada upheld an earlier decision of the Ontario Court of Appeal in the Rasouli case. The details of the Carter and Rasouli cases are as follows (adapted from Alex Schadenberg’s blog):

The Carter case

The Carter case, was launched by the family of Kay Carter, a woman who died by assisted suicide in Switzerland in 2010. The Carter family claimed that Kay was denied the ‘right’ to die with dignity in Canada and her family were forced to break the law by assisting her travel to Switzerland for suicide. They were represented by the British Colombia (BC) Civil Liberties Association.

On 15 June 2012, Justice Smith wrongly decided that Canada’s law forbidding assisted suicide was unconstitutional. Smith found that people with disabilities who are unable to kill themselves by suicide without assistance were discriminated against by the law.

Smith also decided that so-called ‘safeguards’ can effectively protect vulnerable people. Smith gave parliament one year to pass a law allowing assisted suicide and a limited form of euthanasia in Canada.

Fortunately, the federal government appealed the decision of Justice Smith to the BC Court of Appeal.

The BC Court of Appeal found that Smith did not have the right to strike down Canada’s assisted suicide law and that she made several errors and incorrect assumptions in her decision.

The BC Court of Appeal also acknowledged that parliament had recently considered a bill (Bill C-384) that would have legalised euthanasia and assisted suicide in Canada that was overwhelmingly defeated on 21 April 2010 by a vote of 228 to 59.

The BC Civil Liberties Association has announced that it will appeal the BC Court of Appeal decision to the Supreme Court of Canada.

The Rasouli case

The Rasouli case (Cutherbertson V Rasouli) concerned Hassan Rasouli (pictured with his family) who underwent surgery on 7 October 2010 at Sunnybrook Health Sciences Centre for a benign brain tumour. He experienced a bacterial meningitis infection that caused him significant cognitive damage.

On 16 October 16 Mr Rasouli was placed on a ventilator and a tube was inserted to provide him hydration and nutrition.

His doctors, Cutherbertson and Rubenfeld, determined that Mr Rasouli was in persistent vegetative state (PVS) and decided to withdraw the ventilator, but his wife, Parichehr Salasel, who is also a physician, refused to give consent.

The Rasouli family insisted that Hassan was not in PVS and in fact was responding. The family was later proven to be correct and his medical condition was upgraded.

The Rasouli family applied to the Superior Court of Justice to obtain an injunction to prevent the doctors at Sunnybrook hospital from unilaterally withdrawing the ventilator.

The case was heard over three days in February and March 2011 and the decision by Justice Himel was released on 9 March 2011.

Justice Himel decided that the Rasouli family did not need an injunction because the doctors were required to obtain consent before withdrawing medical treatment.

The doctors then appealed the decision of Justice Himel to the Court of Appeal for Ontario.

The Court of Appeal for Ontario unanimously decided that doctors did not have the unilateral right to withdraw life-sustaining treatment. Instead they held that doctors need to seek consent from the Consent and Capacity Board when consent is refused by the person or the attorney for personal care.

The Supreme Court of Canada has now upheld the unanimous decision of the Court of Appeal for Ontario.

The Euthanasia Prevention Coalition (EPC), led by Alex Schadenberg, intervened successfully in both cases. Hugh Scher, the lawyer who represented EPC at the Supreme Court of Canada stated:

‘We are pleased that the Supreme Court has recognised the need for oversight of doctors relative to treatment decisions at the end of life. The Court decision ensures that patient values, beliefs and best interests are given prominence, in conjunction with the clinical considerations of doctors.’

Warnings

It is said that the price of freedom is eternal vigilance. We need to be constantly wary of cases with far-reaching implications that will undermine protections for vulnerable people.

Euthanasia and assisted suicide remain illegal in most countries of the world because of deep concern about of the compromise of public safety that would ensue for disabled, elderly and otherwise vulnerable people were the law to be changed.

Thus far, most of the world’s parliaments have been persuaded by these strong arguments on the basis that the prime duty of parliament is to protect its citizens.

These two victories in Canada should strengthen us in the UK to oppose further attempts to undermine the law through parliament or the courts.  

The Carter case is particularly significant as lawyers representing Tony Nicklinson wanted to submit evidence from it in Great Britain. Nicklinson, who had a condition resembling locked in syndrome, died of natural causes last year after an unsuccessful attempt to secure euthanasia through the courts. 

Bill to legalise euthanasia defeated in Australian state of Tasmania

A bill to legalise euthanasia and assisted suicide in the Australian state of Tasmania has failed in the lower house this week by a vote of 13 to 11.

The result was anticipated after Premier Lara Giddings and Nick McKim MP, who proposed the 52-page bill, were undone by a series of powerful critiques.

However, the battle was still heated, with ten hours of debate over two days.

Michael Cook of Bioedge says that flaws in the bill became apparent over previous weeks with the Law Society of Tasmania produced a scathing analysis claiming that the bill suffered from ‘fundamental drafting errors’. The Law Society, interestingly, made it clear that they had no ethical or moral position on the bill at all and were simply reviewing it objectively.  

Paul Russell, Executive Director of HOPE, reports that Nick McKim upset members of the medical profession by seeming to confuse deliberate killing with good medical care at the end-of-life.

The group Doctors Opposed to Euthanasia pointed out that doctors are protected by law if their actions to mitigate pain are in keeping with sound, ethical medical practice and are not intended to cause death. They saw McKim's assertions as a slight upon medical professionals in Tasmania.

A research paper by two Tasmanian academics, Hannah Graham & Jeremy Pritchard, roundly criticised a discussion paper previously circulated by Giddings and McKim. It reviewed developments in Belgium, the Netherlands and Oregon and concluded that the proposers’ claims that there were no concerns about the operation of the laws in those places were without foundation.

I have previously noted how Cate Faehrmann, an MP in New South Wales, similarly attempted to distort European statistics in another failed attempt to legalise euthanasia earlier this year.

The rights based disability group Lives Worth Living challenged the references in the bill to disability and clearly identified how the bill was likely to discriminate against people living with disability.

Jacquie Petrusma MP spoke clearly and from vast experience about the risks that the phenomenon of elder abuse held for elderly Tasmanians were the bill to be passed.

In a long, gruelling and emotionally charged debate Giddings and McKim did themselves no favours by constantly interrupting speakers who opposed them with aggressive verbal challenges.

The Northern Territory, a vast, mostly rural jurisdiction in the north of Australia, was the first in the world to legalise euthanasia in 1995. Four people died under its law, all assisted by Philip Nitschke, who has subsequently become Australia's leading campaigner for euthanasia. But after only nine months of operation, the Federal Government overturned the law. 

There have been several unsuccessful attempts since to change the law in various Australian states. 

No doubt these misguided attempts to change the law will continue, but it is encouraging to see how they are being defeated by sound argument and facts.

When the strong arguments against euthanasia are given airspace, most parliamentarians in most countries thankfully see the good sense of leaving the law as it is.

Members of the British House of Lords and the Scottish Parliament should take these lessons to heart when they debate the Falconer and Macdonald bills respectively in the spring of 2014. 

New journal on ethics of human biotechnology offers free access to online content

In August I highlighted the launch of a new journal, The New Bioethics, which focuses specifically on the interface of technology and the human body.

The first edition contained nine articles, two of which, the editorial by Trevor Stammers and Matt James, and a guest editorial by Aaron Parkhurst, are available free on line.

Abstracts from the second edition are now available and well worth reading.

The first, by CMF Head of Public Policy Philippa Taylor, studies the long- term psycho-social effects of abortion on women using in-depth, face-to-face interviews.

Some women experienced persistent negative reactions to the abortion that remained ongoing for years; others were positive or neutral immediately post-abortion but experienced varying negative reactions some time later. All expressed sadness and/or regret of some sort. 

Fabio Bacchini, for the University of Sassini in Paris, explores themes in Farewell Waltz, a novel by Milan Kundera, which features a doctor from a female infertility centre in Czechoslovakia who reveals himself to be a secret promoter of eugenics. Kundera is warning about the trap of only being morally concerned about abstract super-individual entities like ‘humanity’ whilst being unable to have the well-being of single individuals at heart.

Joseph Tham, from the Pontifical University in Rome, analyses the underlying tendencies and attitudes towards reproductive medicine borrowing the Nietzschean concepts of nihilism. He argues that when liberty becomes absolute and technology unchecked, as it is in our postmodern societies, transhumanism is the logical outcome. 

Yasemen Erdin, of St Mary’s University College in Twickenham, returns to Alan Turing’s vigorously debated question of whether machines could think and argues that intelligence is not a guarantee of personhood or agency.

If you want to dig more deeply than the abstracts, but are not sure you want to commit yourself to paying for content, then the publishers are offering free access to the journal between 15-29 November. You can sign up on line.

I note that some of the contributors, and both editors, are committed Christians who are also academics in bioethics.

This journal should be a valuable resource for Christian doctors, ethicists and all who have an interest in this rapidly advancing field, where often the technology is upon us before we have had a chance to think critically about it. 

Parents should be informed about the impact of Down’s Syndrome on families

The recent debate on abortion for anencephaly in Northern Ireland has reopened the wider debate on abortion for fetal disability.

It is worth, in this context, remaking the point that the most common disability for which babies are aborted in the UK is not anencephaly but Down's syndrome (DS).

This is usually on the basis of the perceived burden that children with DS will impose on families and the belief that the lives of disabled children are somehow not worth living. Is this justified?

Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston, published a series of three studies in the American Journal of Medical Genetics in 2011 on the impact children with Down’s syndrome have on families (these have been previously covered on the CMF blog here and here and in this submission).

‘So many American women’ he says, ‘are getting prenatal diagnoses of Down's syndrome, and asking: “What does this mean for my family? What does this diagnosis mean for my marriage? What impact will it have on my other sons and daughters?” 

The results are incredibly revealing.

In his first study , 822 brothers and sisters were asked about their feelings and perceptions toward their sibling with Down's syndrome (DS).

More than 96% of brothers/sisters who responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS.

Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% planned to remain involved in their sibling's lives as they became adults. The vast majority of brothers and sisters described their relationship with their sibling with DS as positive and enhancing.

In the second study parents of children with Down's syndrome (DS) were asked how they felt about their lives. Of the 2,044 respondents, 99% reported that they loved their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them.

The overwhelming majority of parents surveyed reported that they were happy with their decision to have their child with DS and indicated that their sons and daughters were great sources of love and pride.

But the third study was most interesting of all as it explored the self-perceptions of children with Down’s syndrome.

Of 284 people with Down's syndrome (DS), ages 12 and older who were surveyed, nearly 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked.

Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. A small percentage expressed sadness about their life.

Rebecca Taylor, writing about this research for Life News when it was first published in 2011, suggested that doctors should give the news of a Down Syndrome diagnosis with a smile saying, ‘There will be challenges but your child is nearly guaranteed to be a happy adult!’

In Britain, where abortion is permitted for fetal disability right up until birth, there were 3,968 Down’s syndrome babies aborted over the period 2002-2010 although the real number may actually be twice as high. Over 90% of all babies found to have Down’s syndrome before birth have their lives ended in this way.

One wonders what their parents were told (watch this video).

Fiona Bruce MP held a parliamentary inquiry into abortion for disability earlier this year, the findings of which were published in July.

One of its main conclusions was:

‘It should be best practice that parents are provided with practical and balanced information as soon as possible after discovery of a fetal disability and before leaving hospital so that they can make an informed choice. This should include leaflets or other information written by relevant disability groups. Parents should be offered contact with families with a child with a similar diagnosis without delay’

The quicker this recommendation is implemented the better.

There is no doubt that bringing up a child with special needs involves challenges, and yet at the very heart of the Christian gospel is the Lord Jesus who chose to lay down his life to meet our own ‘special needs’. The Apostle Paul tells us that Christ died for us ‘when we were powerless’ (Romans 5:6) and that ‘bearing one another's burdens’ is at the very heart of Christian morality (Galatians 6:1).

For Christian doctors bearing burdens involves not only providing the best medical care for the most vulnerable members of our society, but also supporting their families in the long haul, being prepared to speak out when they are being treated unjustly and doing what we can to oppose unjust and discriminatory legislation and health policy.

All of us are called in a whole variety of ways to engage in the fight for these very special people and others in a similar position of vulnerability. Let's pray that we fight these battles well.

Psychological trauma after abortion for fetal disability – parents need to know the facts

The belief that parents and families will be damaged by having a disabled child, and that this damage can be limited through abortion, is almost unquestioned today.

This has been a major assumption accepted by many participants in the current debate on abortion for anencephaly in Northern Ireland, on which I have recently written. 

But does the medical literature bear this out?

The question is an important one to ask both for Northern Ireland and for the rest of UK where abortion for fetal disability is already legal up until the time of birth. 

Recent statistics showed that between 2002 and 2010 there were 17,983 abortions of disabled babies in Britain. The overwhelming majority of these were for conditions compatible with life outside the womb and 1,189 babies were aborted after 24 weeks, the accepted age of viability.  

This 17,983 included abortions for serious disabilities like anencephaly but also babies with Down’s syndrome, cleft palate and club foot. 

Psychological trauma following abortion appears to be least when the pregnancy is early, when there is no maternal ambiguity about the decision and when the child was most definitely not wanted. 

Conversely psychological trauma is most marked with late, wanted pregnancies. 

As abortions for congenital abnormality usually occur in pregnancies that are both late and wanted, it is not surprising therefore that psychological morbidity is considerable. 

Psychological morbidity following termination of pregnancy for fetal disability is prevalent and persistent (1,2) and associated with long-lasting consequences for a substantial number of women (3).  

Rather than leading to psychological well-being, termination of pregnancy for fetal disability is an emotionally traumatic major life event which leads to severe posttraumatic stress response and intense grief reactions that are still detectable some years later (4). 

People do not easily ‘get over it’ although proper support during the loss can lessen psychological morbidity (5). In fact women who terminate pregnancies for fetal anomalies experience grief as intense as those who experience spontaneous perinatal loss with approximately a fifth developing major depression and/or requiring psychiatric intervention (6). 

Their families are also not immune with even very young children and those sheltered from knowledge of the event showing reactions to their parents’ distress and maternal absence (7). 

Some may experience an acute grief reaction or be plagued by guilt and fear that can precipitate marital breakdown. Additionally, there is a risk that through striving to eradicate congenital disability, a community risks promoting a cult of perfectionism that may have discriminatory effects on disabled people (8).

By contrast, current data on children and families affected by disabilities indicate that disability does not preclude a satisfying life. Many problems attributed to the existence of a disability actually stem from inadequate social arrangements that public health professionals should work to change (9). 

This, along with the psychological morbidity often accompanying abortion for fetal disability has led many to conclude that abortion for even severe fetal disability, as well as taking the life of a disabled person, is also worse for the parents and families concerned.

This is underlined by a case report in which a mother, against advice, chose to carry an eventually stillborn baby with anencephaly to term. It was found afterwards that she was ‘managing well and was more emotionally stable than the majority of women who underwent termination on genetic grounds’ (10).

Janet Goodall, a paediatrician with a lifetime’s experience of caring of severely disabled children, describes the ‘pearl effect’. 

‘In a culture that views success and failure in materialistic terms, many perceive disabled children as an extra burden. 

But paradoxically, divorce rates and unhappiness are no more common in the families of disabled children than in those with healthy children. 

Like the grit in the oyster that causes a pearl to form, caring for a child with special needs often strengthens relational bonds and encourages spiritual growth. 

As the agony of Gethsemane led to resurrection life, so the reciprocal love between the disabled child and his parents and the care shown by professionals, families and churches can act as a catalyst for maturity and stability.’(11) 

The Christian ethic, which calls the strong to make sacrifices for the weak, following Christ’s own example to us, leads to a strengthening of family and society, by combating discrimination and strengthening human virtues of patience, perseverance and altruism.

References

1. Davies V et al. Psychological outcome in women undergoingtermination of pregnancy for ultrasound-detected fetal anomaly in the first andsecond trimesters: a pilot study. Ultrasound Obstet Gynecol 2005;25(4):389-92(April)

2. Kersting A et al. Grief after termination of pregnancydue to fetal malformation. J Psychosom Obstet Gynaecol 2004;25(2):163-9(June)

3. Korenromp MJ et al. Long-term psychological consequences of pregnancytermination for fetal abnormality: a cross-sectional study. Prenat Diagn 2005Mar;25(3):253-60

4. Kersting A et al. Trauma and grief 2-7 years aftertermination of pregnancy because of fetal anomalies--a pilot study. JPsychosom Obstet Gynaecol 2005;26(1):9-14 (March)

5. Geerinck-Vercammen CR, Kanhai HH. Coping with terminationof pregnancy for fetal abnormality in a supportive environment. PrenatDiagn 2003;23(7):543-8 (July) 

6. Zeanah CH et al. Do women grieve after terminatingpregnancies because of fetal anomalies? A controlled investigation. ObstetGynecol 1993;82(2):270-5 (August) 

7. Furlong RM, Black RB. Pregnancy termination for geneticindications: the impact on families. Soc Work Health Care 1984;10(1):17-34(Autumn) 

8.Chandler M, Smith A. Prenatal screening and women'sperception of infant disability: a Sophie’s Choice for every mother. NursInq 1998;5(2):71-6 (June) 

9. Asch A. Prenatal diagnosis and selective abortion: achallenge to practice and policy. Am J Public Health 1999;89(11):1649-57(November) 

10. Watkins D. An alternative to termination of pregnancy. Practitioner 1989;233(1472):990,992 (8 July) 

11. Goodall J. The Pearl effect. Triple Helix 2003;10-11(Winter)

The growing mountain of US debt, graphically illustrated

On a visit to Romania two years ago a Christian dentist explained to me how the world economic system worked.

‘It’s like this,’ he said.

‘The average American earns $20 an hour and spends $25 an hour.'

'The average Chinese man earns $5 an hour and spends $4 an hour and lends the other dollar to the American.’

‘Because there are about five times as many Chinese men as Americans the sums work out pretty well.’

‘The only problem though is that both American and Chinese man are doing the same job and it is a global market.'

'So what will happen in time is that wages in America will come down and those in China will go up and when that happens there will be an awful lot of kicking and screaming in the US and possibly something even worse.’

I haven’t checked his sums but I thought his comments were rather insightful and the general gist is chillingly correct.

We all know that US debt is spiralling out of control, but all we get from the media is a moment by moment commentary but without the big picture.

So the Telegraph tells us today that Washington is due to hit its borrowing limit on 17 October, at which point the US government runs out of ‘extraordinary measures’ to raise new cash to pay its bills, risking an unprecedented default on US sovereign debt.

We are warned that markets are therefore braced for a choppy week because US politicians failed to strike an agreement on raising the debt ceiling over the weekend, leaving it just days away from hitting its $16.7 trillion (£10.3 trillion) borrowing limit.

Jim Yong Kim, President of the World Bank, on Saturday has warned that the US is just ‘five days away from a very dangerous moment’ unless politicians produce a plan to avoid default.

Christine Lagarde, President of the IMF, meanwhile repeated her warning that failure to raise the US borrowing limit would lead to ‘massive disruption the world over’. 

But let’s put the daily headlines aside and look at the big picture.

By raising the debt ceiling even further the US will be moving even more into unprecedented debt.

Since 2001 the debt limit has been raised 14 times for a total of $10.7 trillion to its present level of $16.7 trillion (see above).

It also stands at around 100% of GDP, the highest level since the Second World War (see right).

So who is this debt owed to? (see below)

Over half of the debt is publicly owned within the US or is tied up in Social Security Trust Funds.

Over 30% is owed abroad with China (8%) and Japan (6%) being the biggest creditors.

When I was a boy my father taught me to live simply, give generously, save for future necessities and never to go into debt. It has served me well.

St Paul told the church in Rome to ‘Let no debt remain outstanding, except the continuing debt to love one another.’ (Romans 13:8)

Jesus was even more radical, ‘Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.’ (Luke 6:38)

Why is it I wonder that the richest nation on earth is also the most indebted and lurching from one financial crisis to another?

I suspect the answer is found in another Bible book, ‘Human desires are like the world of the dead - there is always room for more.’ (Proverbs 27:20)

However high your income is, if your expenditure is greater you are heading eventually for a fiscal cliff without a happy landing. 

Defending the ‘indefensible’? Twenty reasons to think twice about aborting a baby with anencephaly

Note: This is a long post but the main points can be easily scanned. You can listen to my interview on the Stephen Nolan show on BBC Radio Ulster on this issue here. 

A woman who is carrying twin girls with a fatal foetal abnormality has appealed to the Northern Ireland Minister for Health Edwin Poots to allow her have an abortion in Northern Ireland.

The woman, known as Laura, who is almost 22 weeks pregnant, said she was very recently informed that her babies have anencephaly and had no chance of survival. She is now arranging to travel to England for an abortion.

The case of another Northern Ireland woman, Sarah Ewart, who had an abortion last week in London for a baby with the same condition at 20 weeks has recently been highlighted by the BBC’s Stephen Nolan.

The 1967 British Abortion Act does not apply in Northern Ireland, where termination is permitted only where it is ‘necessary to preserve the life of the woman or there is a risk of real and serious adverse effect on her physical or mental health, which is either long-term or permanent’.

Currently only about 40 abortions are performed in Northern Ireland each year although 905 women from the province had abortions in England Wales in 2012.

A consultation is currently taking place about changing the guidelines on abortion and Minister of Justice David Ford has said that there is a need to widen it ‘to look at difficult issues like foetal abnormality to see if where the law is currently drawn is in the right place’ (see also here).

Anencephaly is a severe form of spina bifida where a failure of fusion of the neural rube in early pregnancy results in the baby developing without cerebral hemispheres, including the neocortex, which is responsible for cognition. The remaining brain tissue is often exposed, ie. not covered by bone or skin (see diagram above).

Those babies who survive to birth almost all die in the first hours or days after birth. There is no curative treatment available, only symptom relief.

Anencephaly is not uncommon, occurring in 1 out of 1,000 pregnancies, but only 3 out of 10,000 live births. Over 95% of parents opt for abortion in countries where this is legal and 208 babies with the condition were aborted in England and Wales in 2012. 

One cannot hear these tragic testimonies without being deeply moved by the emotions expressed. There are few things worse than losing a child and it is a huge thing for a mother to carry a baby to term, knowing that it will be born with a terrible deformity and die shortly afterwards.

It is perhaps not surprising therefore that the media coverage of these recent cases, along with the public reaction, has been overwhelmingly supportive of the decision to abort and that there is now growing pressure for a change in the law.

Very few people, even doctors or disabled people’s advocates, are willing to express a contrary opinion, and I do so only because I believe that the issue is so important that the arguments for the contrary position need to be heard.

Before I qualified as a doctor I probably would have taken the generally expressed view, but an experience I had as a junior doctor dramatically changed my attitudes both to disability and abortion.

More on that later, but first, at the risk of being accused of trying to defend the ‘indefensible’, let me give twenty reasons why I believe parents (and doctors) should think twice about aborting a baby with anencephaly, and why I believe we as a society should be advocating an alternative approach. I would stress that this is my sincerely held personal view.

1. A baby with anencephaly is a human being

Our humanity is not diminished or degraded by sickness, disability, fragility, intellectual impairment or by what people think of us or how they value us. Babies with severe conditions like anencephaly are human beings worthy, like all human beings, of profound wonder, empathy, respect and protection.

2. A baby with anencephaly is not brain dead

Babies with anencephaly, although not conscious, are not brain dead. Their brainstems are functioning at least in part which is why they can breathe without ventilators, often survive for several days and are  not permitted to be used as organ donors.

3. A baby with anencephaly is a dependent relative

Babies with anencephaly are profoundly dependent but are also biologically related to their parents and carry their genes. They are therefore dependent relatives and so should I believe be treated with the same love and respect as any other dependent and dying close relative.

4. A baby with anencephaly is a disabled person

Babies with anencephaly are profoundly disabled and have special needs. They are also people because personhood is not contingent upon intellectual capacity or function but conferred on every member of the human race. They are therefore just profoundly disabled people who should be treated the same as disabled people at any other age. There are other causes of similar brain dysfunction including birth asphyxia, trauma, stroke and brain tumour. 

5. Palliative care is the best response to terminal illness

Babies with anencephaly are human beings with a terminal condition. They are dying babies for whom no curative treatment is possible. The appropriate management in treating patients in this condition is palliative care – food, water, warmth, human company and symptom relief. Perinatal hospice is a wonderful concept that should be promoted much more widely. 

6. We should not be making judgements about the worth of other people 

None of us has right to make value judgements about the worth of another human being; especially when that person is unable to express an opinion about the matter. Equally we do not have the right to end their lives regardless of what burden we perceive they impose on us. 

7. Abortion for anencephaly is discriminatory

Anencephaly is usually diagnosed at the time of the 18 week anomaly scan so abortion is inevitably later than this. Most people however strongly oppose abortion beyond 20 weeks. The recent parliamentary inquiry into abortion for fetal disability (Bruce Inquiry) concluded that the current law on abortion for severe disability was discriminatory in two ways. First it allowed abortion up until 24 weeks for able-bodied babies but until birth (40 weeks) for disabled babies. Second it allowed abortion for babies with significant risk of a serious abnormality, but not for those with lesser degrees of special need. 

8. Abortion for anencephaly is often a coercive offer

The Bruce Inquiry revealed that there was a strong presumption from doctors that parents with disabled babies would choose to have them aborted. This led to a huge amount of subtle or direct pressure being placed on parents who decided not to abort. They were repeatedly asked to reconsider their decisions and treated like pariahs – in short they were discriminated against. It is just this sort of pressure that has led some commentators like Melinda Tankard Reist to talk about abortion for disability as a ‘coercive offer’. Reist’s book ‘Defiant Birth’ tells the personal stories of women who have resisted ‘medical eugenics’ and dared to challenge the utilitarian medical model and mindset.  

9. Abortion for anencephaly is contrary to every historic ethical code 

Historic codes of medical ethics such as the Hippocratic Oath and the Declaration of Geneva prohibit abortion. The latter states as one of its central tenets, ‘I will maintain the utmost respect for human life from the time of conception; even against threat I will not use my medical knowledge contrary to the laws of humanity’.

10. Abortion for anencephaly exchanges one problem for a whole set of different problems

Abortion may appear to offer a solution but the mother is still left to deal with the guilt, emotional trauma and unresolved grief of loss of what is almost always a wanted baby. These inward scars may take a lifetime to heal.

11. Saying goodbye properly is important for resolving grief and achieving closure

Achieving effective closure after the loss of a baby is best achieved if parents are able to spend time with their dying, or dead, baby, saying what they would have wanted to say and treasuring the precious moments. Covering the baby’s head with a woollen cap may enable them to focus on the eyes and face which are usually normal to look at (see the story of Rachel). ‘Saying Goodbye’ is a charity which is running very welcome thanksgiving services for couples who have lost babies before or after birth. 

12. Abortion for anencephaly can be profoundly damaging to a mother’s mental health

Mothers who abort babies for fetal abnormality are highly susceptible to mental health problems afterwards. This is because the abortions are late, the babies were generally ‘wanted’, an emotional bond with the baby has usually been established and there has been no opportunity properly to say goodbye. There is a better way than abortion.

13. Pregnancy is the most intimate form of hospitality

A mother’s womb offers protection, warmth, shelter, food and water within the body of one’s closest relative. There is no form of hospitality that is more intimate or more suited to one whose life is going to be very short.

14. There are real dangers of incremental extension once we embark down this route

The British Abortion Act 1967 was driven through on the back of the thalidomide disaster and was meant to authorise abortion only in severe circumstances. Now there are 200,000 abortions a year with one in five pregnancies ending in this way. Babies have been aborted for cleft palate and club feet. Recent statistics showed that between 2002 and 2010 there were 17,983 abortions of disabled babies in Britain. The overwhelming majority of these were for conditions compatible with life outside the womb and 1,189 babies were aborted after 24 weeks, the accepted age of viability. 

15. Deformity does not define us

Our worth as human beings is independent of any disabilities we might have.

16. Easing our own pain is not sufficient reason for ending another person’s life

Given that babies with anencephaly do not feel pain, the question has to be asked whose pain their deaths are actually relieving. Any interventions should primarily be aimed at benefiting the babies themselves.

17. Anencephaly forces us to acknowledge and face our deepest prejudices

In a society that values physical beauty, athletic prowess and intellectual capacity highly it is easy to see why babies with anencephaly are low down the pecking order. They fall foul of our deep societal prejudice toward people who are ‘ugly to look at’, ‘unintelligent’ and ‘physically inept’. The only effective way of overcoming such prejudices is to cultivate attitudes of compassion and care for people with severe disabilities. Caring collectively for those who are suffering, disabled and dying makes our society less selfish.  

18. Major life decisions should not be made at a time of crisis

Major life decisions, like choosing to abort one’s disabled baby, should not be made at a time of great emotional trauma. Parents need to be given the time, space and support necessary to make an unpressured and unhurried decision and need to be told that keeping the baby is an alternative option for which full support will be given.

19. We should not allow ourselves to be manipulated by the media or those with an agenda

I was deeply shocked that the BBC would interview a deeply traumatised grieving woman who had just heard the most devastating news of her life in front of a national audience just days before one of the most horrendous experiences a woman can go through – aborting her own baby. More than this, such hard cases should not be used by media presenters with a wider political agenda of liberalising abortion laws (see Melanie McDonough in the Spectator). This was I believe both exploitative and abusive. Huge sensitivity is also needed with the language we use. These are babies living with anencephaly. They are not ‘anencephalics’, ‘dead babies’ or ‘non-persons’. These are dehumanising terms. Just as we would not accept the terms ‘spastic’, ‘moron’, ‘imbecile’ or ‘vegetable’ to describe human beings, neither should we accept these.

20. Death is not the end

I have attempted to address the points above to a general audience but allow me one explicitly Christian argument. As a Christian I believe that human beings are made for eternity. This earthly existence is just the ‘Shadowlands’. So when we think of loved ones, who have died with dementia, we do not think of them as they were but as they will be. Because of Christ’s death and resurrection we look forward to the resurrection of the body into a world where there is no dying, mourning, death or pain. In this new world there will be no anencephaly. The Christian ethic is to treat all people as we would treat Christ and to treat others as Christ would have done. The bottom line is that we should treat babies with anencephaly as if they were Jesus himself, and treat them in the way he would have done.

I mentioned above an experience I had as a junior doctor which changed my attitudes to abortion and disability.

The administrative clerk on the medical ward where I was working was heavily pregnant and I asked her when she was due. She gave me the date and before I could say anything else said, ‘my baby has anencephaly’. While I was inwardly asking why she had not had an abortion, she added, ‘I could not bring myself to end the life of my own baby’.

The baby was born a few weeks later and survived about a week. She held it, nursed and cared for it and said her goodbyes before its inevitable death.

Up until that point I had not contemplated that such an approach was even possible. She not only demonstrated that it was but taught me a huge lesson about courage, compassion and how to face and handle tragedy, grief and bereavement. I have never forgotten it and resolved then, that if I was ever in the same situation I would want to do the same.

I have heard many similar testimonies since from women in similar situations who have made similar decisions and have become even more convinced that this is best way to handle it (See testimonies here, here, here, here and here and resources for parents here).

Having a baby with a severe disability changes one’s life forever whatever choice one makes. But choosing to offer the hospitality of pregnancy and a mother’s care and compassion to a dependent and severely disabled relative, and to be willing to shoulder the inevitable pain of separation and bereavement, is I believe the best way through this tragic situation. 

Useful Links 

Testimonies 
A Life precious to God 
Waiting with Gabriel 
Baby Rachel's Legacy 
Love poured out is never wasted 
How to cope when you find your baby has special needs 
Our journey with anencephaly
Vapour and Mist - Sophia's story

Face book Groups 
Perinatal Hospice 
Waiting with Gabriel 
A Gift of Time
Anencephaly.info

Resources 
Perinatal Hospice 
Saying Goodbye
Links about anencephaly 
Defiant Birth
Anencephaly.info
NINDS Anencephaly information page 
Inquiry into Abortion on grounds of disability