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When Jo Moore infamously sent a memo saying in effect that 11 September 2001 was a good day to bury bad news, she inadvertently lifted the veil on a time honoured practice of releasing news and reports in the midst of major national or world events in the hope that the news media fail to pick up on them or make enough of them to garner the public’s interest.

So it was that in the midst of one of the most tumultuous days, in the most tumultuous week (yet) of one of the most tumultuous years in recent British politics, the British Medical Association (BMA) and the Royal College of Physicians (RCP) chose to release their guidance on the withdrawal of clinically assisted hydration and nutrition (CANH) from patients with prolonged disorders of consciousness (PDOC). Only the Guardian released a well pre-scripted story to mark this – the rest of the media were focussed elsewhere!

CMF made a submission to the BMA when it was seeking evidence for its new guidelines – needless to say we had significant concerns about what was then being proposed. We have also blogged before on our concerns about this guidance, coming after a Supreme Court ruling  in July this year that such decisions no longer need to be taken to the Court of Protection but can be left in the hands of clinicians, in consultation with families. The new guidance replaces the rules established after the Tony Bland case in 1993. Under them the Court of Protection approved the removal of CANH from over 100 people.

This latest ruling affects up to 24,000 patients with two types of PDOC – permanent vegetative state (PVS) and minimally conscious state (MCS). However, in a worrying development the BMA have extended the guidance to include those suffering with severe strokes and dementia, so many, many more patients could be affected in the long term.

People with PVS (awake but not aware) and MCS (awake but only intermittently or partially aware) can breathe without ventilators but need to have food and fluids by tube (CANH).

These patients are not imminently dying and with good care can live for many years. Some may even regain awareness. But if CANH is withdrawn, then they will die from dehydration and starvation within two or three weeks.

Until last year all cases of PVS and MCS have had to go to the Court of Protection before CANH could be withdrawn.

The BMA brought forward their guidance following the ruling in two cases last year (known as M and Y). The High Court ruled that if the relatives and medical staff agreed that withdrawal of CANH was in the patient’s ‘best interests’ then the court need not be involved.

The Official Solicitor appealed this decision to the Supreme Court , but the judges upheld the decision of the High Court.

The effect of this his new guidance is that it makes no difference in principle between turning off a ventilator and removing a feeding tube for food and water, as both are now regarded as ‘forms of medical treatment’. It also fails to treat patients with PVS and MCS differently to people with ‘severe stroke’ a ‘degenerative neurological condition’ or ‘other conditions with a recognised downward trajectory’.

It fails to recognise the latest peer reviewed research from the American Academy of Neurology (AAN), the world’s largest association of neurologists and neuroscience professionals, which just this summer published a paper detailing the difficultly in reliably diagnosing the extent of brain damage in patients.”

A summary of this study together with an accompanying literature review was published online in August 2018 in the medical journal Neurology. An accompanying press release summarises the main points.

It found four in 10 people who are thought to be unconscious are actually aware. One in five people with severe brain injury from trauma will recover to the point that they can live at home and care for themselves without help. And went on to recommend that the term PVS should be dropped.

It is important that doctors and clinicians follow the latest medical practice, and this should be based on high quality evidence. What this highlights is the complexity of reliably diagnosing PVS and MCS. This is why this guidance is not just outdated but is error ridden.

It also misses the important ethical point that there is a clear difference between turning off a ventilator on a patient after brain death and removing CANH from a brain-damaged patient or someone with a degenerative neurological condition, or even those on a ‘downward trajectory’. Our concern remains that this guidance, while perhaps initially seeming compassionate and less burdensome than the previous regulations, actually removes protection from highly vulnerable patients and widens the scope of those who are affected. Some of these patients may be more aware and have a better chance of recovery than is initially apparent. It also opens the door a crack wider to legalised euthanasia in the UK, which may be why Dignity in Dying has been so welcoming.

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The Government’s public consultation on possible means to make it simpler and easier for people in England and Wales to change their legal gender concludes on 19 October. Prime Minister Theresa May has said that she wants ‘to see a process that is more streamlined and de-medicalised – because being trans should never be treated as an illness.’ It’s true that the present system is overly bureaucratic and expensive – reform is overdue. But would the current proposals lead to better outcomes?

The main change proposed is to a system of self-declaration that would make gender identity simply a matter of a person’s subjective feelings about themselves, and changing legal gender simply a matter of personal choice. It encourages the view that gender identity defines reality and that biological sex is but a social construct, something ‘assigned’ at birth. This new ideological dogma has no evidence-base in science but self-declaration would appear to reinforce it as if proven fact.

There is evidence (see here and here) that amongst those who present with gender incongruence there is an elevated prevalence of co-morbid psychopathology, especially mood disorders, anxiety disorders and suicidality. A Dutch study also reported the co-occurrence of autistic spectrum disorders (ASD) and gender dysphoria. The incidence of ASD in a sample of 204 children and adolescents with dysphoria (mean age 10.8) was 7.8%.

Self-declaration would deprive these individuals of contact with mental health professionals at the time when their assessment and advice could be crucial. There is a real risk that people who require psychological support and specialised psychiatric treatment would not receive it.

This is of particular concern for teenagers, struggling with the turbulent effects of puberty, social transition and identity issues in general. Pursuing legal gender transition may harmfully distract a young person from addressing psychological issues such as anxiety and depression that may complicate gender dysphoria or even be at the root of it, with the help and support of mental health professionals and others.

According to trans activists, such psychological issues are due simply to ‘minority stress’, resulting from society’s negative attitudes towards trans people, but such claims are without supportive evidence. The results of another recent study suggest otherwise. It offers no proof that radical therapies such as puberty-blocking drugs and cross-sex hormone treatment will prevent adolescents from attempting suicide. If anything, the findings of the survey underline the need for serious scientific research into the potential environmental causes of gender dysphoria and the risks—both physical and psychological—of medical transition.

Paediatrician Michelle Cretella :  ‘It shows that the much higher rate of attempted suicide among female-to-male, non-binary, and questioning transgender youth has more to do with factors relating to their biological sex than it does with anything related to gender identity. If confirmed, this may help explain the causes, since it is possible that common underlying psychological and environmental factors may be at play triggering both gender dysphoria and suicidal tendencies in a subset of these adolescents.’

Clearly, much more research is needed. The prevailing rush to treat adolescents with puberty blockers and cross-sex hormones is not based on robust evidence that this approach results in lasting, improved mental health outcomes. The treatment is experimental, in response not to good quality trial outcomes so much as to well-organised lobbying by activists. Changing the law to make gender recognition dependent only upon self-declaration will catapult yet more young adults with complex mental health issues into the hands of a few, overly willing medical personnel without careful assessment of underlying causes and treatment of co-existent mental health disorders.

A new phenomenon, known as rapid-onset gender dysphoria (ROGD), has been observed to begin suddenly in an adolescent or young adult (usually a girl) who would not have met criteria for gender dysphoria in childhood. A peer-reviewed study published in August 2018 noted: ‘the worsening of mental well-being and parent-child relationships and behaviours that isolate adolescents and young adults from their parents, families, non-transgender friends and mainstream sources of information are particularly concerning’.  The role of social media in spreading a form of ‘dysphoria contagion’ among contacts needs further research. Mindful of this, Penny Mordaunt, the equalities minister has requested a study to look into why there has been so sharp a rise in referrals for gender reassignment among adolescents, particularly girls.

The same caution is needed in treating adults with gender dysphoria. The largest study following adults who have undergone medical gender transition was conducted in Sweden. Thirty years after their transition, the suicide rate was 19 times higher among transgender adults than among the non-transgender population. It is clear that these results do not support the alleged curative effects of transition.

We should also take note of the accounts of people seeking to ‘de-transition’ and re-identify with their birth gender. Self-declaration would make it both easier and quicker to change legal gender and thus encourage earlier medical transition. This would both expose the process to frivolous abuse and increase the possibility that people make choices they later come to regret.

Some in the LGBT community have moved away from a simple ‘binary’ view of gender, preferring to see gender identity as fluid – liable to change or fluctuate over time. It is difficult to imagine a legal process for gender change in such an environment that could be both fit for purpose and resistant to frivolous abuse. What is certain is that to remove all medical or social prerequisites for legal transition will trivialise what is a complex human developmental process.

The Government is to be commended for seeking to reduce the burden of the process, and it might indeed be possible to improve aspects of the existing law, but removing sensible ‘barriers’ to overly-easy transition will result in more people embarking on early medical transition with insufficient thought, more people living to regret irreversible changes to their bodies and an overall increase in co-morbid mental health issues including suicidality.

You can read the full text of CMF’s response to the government consultation here

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The International Christian Medical and Dental Association (ICMDA) has called on the World Medical Association (WMA) to protect doctors’ conscience rights on abortion and euthanasia.

 

ICMDA, which unites national associations of doctors and dentists in over 80 countries, was responding to a move by Canadian and Dutch doctors to challenge the WMA’s longstanding commitment to protecting freedom of conscience at a meeting in Iceland later this year.

 

The WMA was established after the second world war in the face of the atrocities carried out by Nazi doctors. It exists to ensure the independence of physicians, and to work for the highest possible standards of ethical behaviour and care by physicians, at all times.

 

Since 1947 the WMA has published a number of key policies, which have shaped medical ethics including the Declaration of Geneva – the successor of the Hippocratic Oath (1947) – the International Code of Medical Ethics (1949,) the Declaration of Helsinki on research involving human beings (1964), the Declaration of Tokyo commanding physicians not to participate in torture or degrading treatment (1975) and the Declaration of Malta on Hunger Strikers (1991).

 

But at its upcoming Medical Ethics Conference (2-4 October 2018) and General Assembly (3-6 October) in Reykjavik, it will be debating proposals that would significantly weaken its stance on the freedom of conscience rights of doctors with respect to abortion and euthanasia.

 

Its current position on abortion makes the freedom not to be involved in any aspect of abortion quite clear. The new proposal limits this right only to actually performing an abortion, but not to assistance, referral, oversight or more peripheral involvement.

 

The statement also makes it clear that doctors have an obligation to intervene when there is a threat of serious injury or damage to the woman’s health. Again, this could require doctors to perform abortions on grounds of the woman’s mental health, a caveat that could lead to doctors being pressurised to perform abortions on demand.

 

At the ICMDA’s General Assembly during their quadrennial World Congress in Hyderabad in August 2018, the membership unanimously supported a statement asking the WMA to reconsider these changes, and in particular to make it clear that freedom of conscience should apply to the right not to refer or advise, and that the doctor’s obligation to perform an abortion was to protect the physical health of the woman.

 

In addition, while the WMA has a policy of not supporting euthanasia and assisted dying, ICMDA has also asked that they make it explicit that doctors in those countries which permit euthanasia should have the right to conscientious objection to both participation and referral.

 

It is concerning that a body, set up to promote medical ethics and preserve freedom of conscience in the wake of the revelations at the Nuremberg trials, is under pressure to undermine freedom of conscience in this manner.

We can only hope and pray that the voices being raised to maintain such freedoms will be listened to, because to override freedom of conscience in one area for one group is threaten such freedoms for all.

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When in 2016, an editor from a leading academic publisher approached me about contributing a book chapter on the ethics of organ markets, I readily agreed thinking that this would entail little more than many other previous commissions. With most bioethical issues, the arguments pro and con are usually abstractions to be weighed and evaluated and a conclusion eventually drawn – or sometimes avoided in order to prolong ethical fence-sitting.

This topic however did prove to be rather different. One of early findings was that once organ acquisition from the living moves from being a matter of gifting the organ by donation to gaining the organ by financial transaction, a line is crossed which changes the whole environment within which transplantation takes place in a society. Once you have an organ market it makes people think more carefully about why they should be an altruistic donor. This I could have predicted but the second finding however took me completely by surprise. It was quite impossible to write about organ markets without writing about people trafficking. It soon became clear that wherever people trafficking is happening, organ trafficking will either be a part of it or closely linked and organ trafficking is difficult to disentangle –at least at the margins – from organ trafficking

Headlines such as “Pakistani police rescue 24 from organ trafficking gang” and “Boy of 12 smuggled into the UK for gang to sell his body parts” are a far cry from the kind of ‘abstractions’ I thought I would be dealing with a few months before. I contacted the editor and said I didn’t think it would be possible to write about organ markets in isolation from organ trafficking – in the largest anthology on organ trafficking I could locate the majority of the chapters were about organ markets- and she agreed that I could broaden the chapter out.

Universal Prohibition Advocated

Examination of websites such as those of the UN, World Health Organisation, The Transplantation Society and the International Society of Nephrology revealed that every international declaration on people trafficking (such as the UN’s Palermo protocol) specifies organ trafficking as a specific form of exploitation linked to people trafficking and declarations on organ trafficking (such as the Declaration of Istanbul) as well as prohibiting the practice also stress that “organ donation should be a financially neutral act”.

Despite such universal condemnation however, it is reckoned that around 10% of organs worldwide are trafficked meaning that an illegally acquired organ is transplanted every hour. How is it then that the practice remains so persistently prevalent?

A Chorus of Approval

One of the factors involved is that advocates of organ markets, though they may well be motivated by a genuine desire to see fewer patients die from lack of an available matching organ also tend to play down the reality of the links with people trafficking.

There are three main groups of people involved in promoting organ sales – philosophers (especially ‘practical’ ones), economists (particularly neoclassical ones) and doctors (particularly those who work in private healthcare systems).

Once this became clear, the task of the research then became to understand the arguments from each of these three groups seeking to justify payments for organs. I then sought to see whether the claims made in such arguments actually worked out in the real world and looked at the experiences and finding of researchers working in India, the Philippines and other poor parts of the world.

Finally since most of those advocating organ sales pointed to Iran as the shining paragon of how organ markets work, I then looked at reports of what is happening in Iran.  Whilst it is true that Iran has no waiting list for organ transplants and is the only country in the world in which this is the case, there is a price to be paid and since the majority of organ movement is out of the poor and into the rich, it is not difficult to work out who is paying it.

One of the most chilling verses in the New Testament is Revelation 18:13 – part of the lament of the merchants over the crash of Babylon “because there was no one left to buy their cargo” (Revelation 18:v11).  The list of their merchandise goes on for two verses and concludes in the King James Bible with “wine, and oil, and fine flour, and wheat, and beasts, and sheep, and horses, and chariots, and slaves, and souls of men.”  The final phrase of “souls of men” is translated as “human beings sold as slaves” in the NIV and “bodies – that is human slaves” in the NLT. John clearly sees the end of human trafficking and slavery as the future trajectory for God’s plan for the world. This is one part of the fullness of Kingdom to come that we can and should seek to do some about this side of eternity too.

Trevor Stammers

Dr Trevor Stammers is Reader in Bioethics and Director of the Centre for Bioethics and Emerging Technologies.

Trevor’s findings are due to be published in the spring of 2019

This blog was originally published on the JAM Network Blog on 30 August 2018

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The Department for Education is drafting guidance for schools who are now required to teach Relationships Education (RE) at primary school and Relationships and Sex Education (RSE) at secondary school. It is seeking views from the public on these drafts before they are put before Parliament and the final guidance is published.

This is an important time in the development of sex and relationships resources in the UK. School sex education is intended, for good or for ill, to influence both attitudes and behaviours to improve sexual health. Whether improvements occur very much depends on what is in the curriculum.

Sex education policy has been, and still is, largely driven by concerns about teenage pregnancy and STIs and, more recently, the importance of the adequacy of ‘consent’. Advice given on SRE by leading campaigners is devoid of references to morality, marriage or family life. It talks about sex as a normal and pleasurable fact of life for youngsters and, apart from stressing the importance of contraception and consent, it has nothing to say about the moral context in which sex is to be enjoyed. This is the kind of guidance they would like to see in all schools, primary and secondary. There is no reference to fidelity and exclusivity.

The bar of sexual morality in school sex education seems to have been lowered to the minimum level that will satisfy the legal requirement of consent as set out in the criminal law.

Sometimes the bar is even lower than that: the serious case review into child exploitation in Oxfordshire in 2015 reported that: ‘There appears to have been a tolerance of underage sexual activity’ and some professionals showed: ‘…a reluctance to take a moral stance on right and wrong, seeing being non-judgemental as the overriding principle. What is right and wrong about youthful sexuality is anyway a rather blurred issue.’ In this case sexual health education policy facilitated an acceptance of criminal underage sexual activity and serious abuse.

Driving this is the liberal pursuit of value-neutral ideals and personal, rational autonomy.

There is now no commonly accepted sexual morality, thus any moral guidance as to when and in what circumstances it might be wise to say either ‘yes’ or ‘no’ to sexual activity is deemed to be too prescriptive and an infringement of individual liberty. It is simply assumed that sexual activity is a normal and inevitable stage in the development of children and young people. Consequently, genuine abstinence promotion is viewed as an obstacle rather than an option in the promotion of ‘safe’ sexual behaviours.

Dr Olwyn Mark, Head of Research at Love for Life, : ‘To date, a liberal understanding of moral education has dominated the moral discourse surrounding RSE. The ‘informed choice’ approach says that we are to educate children towards independence and self-sufficiency where young people are perceived to make free autonomous choices. It presumes that young people have the innate ability to reason morally and to act accordingly.’

This approach to RSE presumes that a young person can shape their own morality without being given any social values or worldview to reason and act within. It is perceived to be a morally neutral approach to education but it is not possible to promote rational decision-making, without first providing young people with moral resources or starting points from which to do so.

The weakness of a ‘value-free’, approach, that gives no moral guidance on when or under what circumstances it would be right or even prudent to say ‘no’ to sexual activity, is that it simply affirms that the young person has the freedom to consent. (It could be argued that a so-called ‘value-free approach actually steers young people towards consent, given their natural curiosity and the effect of peer pressure). Choice becomes the prime value, irrespective of what the choice actually is.

A comment by a school nurse illustrates this well: ‘I don’t consider I’ve failed if a girl gets pregnant as long as she’s got pregnant because she knew where advice was and chose not to access it’.

Olwyn Mark warns that reducing decision-making to just ‘consent’ in effect socialises and educates young people to sleep with strangers.

We are not as autonomous as we might think or wish. If teaching on ‘health protection’ is around safer sex, not abstinence, then not only are we reducing negative sexual outcomes to teenage pregnancy and STIs but, importantly, the underlying values of such education are revealed: the presumption of sexual experimentation by children.

Governments know how to be prescriptive in directing children’s ‘choices’ when it comes to taxing fizzy drinks, banning junk food adverts or underage alcohol consumption. Governments and professionals who create an environment where sexual activity amongst children is seen as acceptable and the norm are being equally prescriptive in promoting their particular value judgements, masquerading as neutral when they are nothing of the sort.

No policy approach to RSE can be morally neutral.

 There is always a moral dimension where human relationships are concerned. And where political, cultural and educational ideologies are at work, the presuppositions behind those ideologies become embedded in policies concerning relationships.

When sex education programmes presuppose that there is no right or wrong in teenage sexual activity (just freedom of choice) they do not provide a robust and coherent moral framework for the guidance of young people. As such, they cannot be said to be in the best interests of youngsters, who are left rudderless.

They give young people little to aspire to and nothing to validate their intuitive sense that sex is best kept for committed relationships.

Christian Smith observes: ‘Emerging adults can jump into intimate relationships, assuming that sex is just another consumer item, recreational thrill, or lifestyle commodity. But many of them soon discover the hard way that sex is much more profound and precious than that. But then it is too late. They feel they have lost a part of themselves that they cannot recover.’

We have evidence now that current sex education programmes do not produce the results they aim for.

A 2016 Cochrane study found that current sex education programmes do not reduce pregnancy and STIs among the young. In fact, they have no effect on adolescent pregnancy and STI rates. At the same time we know STI rates have actually risen, along with sexual harassment, sexting and online pornography. This BMJ editorial draws similar conclusions on sex education policies. A 2015 US study found that providing over-the-counter access to emergency contraception had no effect on abortion rates and led to increased STI rates. Other US research has recently found that: ‘…comprehensive sex education has essentially been ineffective in US school classrooms and has produced a concerning number of negative outcomes.’

 Where does that leave us?

Youngsters need to be taught how to critically evaluate the moral messages that are currently presented to them (under the guise of being neutral and ‘value-free’) and not to reduce morality to consent. We need to move beyond immediate health outcomes towards a more holistic understanding of young people’s relational and emotional wellbeing – a different policy approach – because: ‘Sex is not isolated from our overall emotional development but occurs within and contributes towards it.’ (note also the WHO definition of sexual health). Our aim should be to guide them towards a better vision of relationships.

Rather than merely warn against the narrowly defined dangers of unplanned pregnancy and STIs, or the importance of consent (which of course are important warnings) we should be confident about presenting a more positive moral message about the significance of sexual relationships and the goodness of healthy sexual intimacy in the context of life-long fidelity. There is no reason not to: the SRE Guidance 2000 by the DfEE said that young people often complain that there is a ‘lack of any meaningful discussion about feelings, relationships and values’.

Children’s greatest need in RSE is not more autonomy, but support and guidance as they develop holistic sexual values and attitudes. Dr Olwyn Marks suggests they also need to be taught: ‘the virtues of Christian love and chastity, dispositions which can enrich the moral discourse of SRE.’

To those fearful of speaking Christian truths boldly, she adds that: ‘The presumption that a religious voice is any less valid or rational within policy reasoning and formulation than, say, a naturalistic worldview position is also a flawed position that must be challenged.’

I said at the beginning that school sex education is intended to influence attitudes and behaviours. I end with this encouragement: ‘By teaching young people what is morally good, we can encourage them to aspire to what is good and to go on to live out what is good.’

I gratefully acknowledge the work of Dr Olwyn Mark, Head of Research and Strategic Partnerships at Love for Life, in her two papers here and here, and her book: Educating for Sexual Virtue: A Moral Vision for Relationships and Sex Education.

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