NHS trusts’ cosy relationships with Jehovah’s Witness leaders could have tragic consequences

Committees of Jehovah's Witnesses who encourage patients to refuse treatments involving blood are seeking influence in hospitals – and many NHS trusts are holding the door open for them, writes Lloyd Evans.

If you know anything about Jehovah's Witnesses, you will know the religion prohibits blood transfusions. Since 1945 when the religion decided that Biblical injunctions on eating blood also applied to using it medically, the controversial teaching has been fodder for some compelling fictional narratives - notably including Ian McEwan's novel The Children Act.

Nearly all fictional approaches to the Jehovah's Witness blood prohibition grapple with the enormous ethical dilemma of respecting the religious rights of the individual while doing everything possible to preserve human life.

When minors are involved, most would agree that the dilemma diminishes significantly. No parent should be allowed to use their personal religious beliefs as a pretext to deny their child life-saving treatment. Thankfully there are numerous cases around the world of judges duly intervening when parents try to resist the advice of doctors in such instances.

What many do not understand is that there is more to this dilemma than individual Jehovah's Witness patients and their resolve to refuse blood clashing with the impulse of doctors and nurses to prevent death wherever possible.

There is an ominous third party on the scene.

While writers and directors have been romanticising the blood transfusion dilemma in hospital and courtroom dramas, these individuals have been quietly working away in the background to establish a foothold in nearly every NHS trust, so when a Jehovah's Witness is hospitalised with a likelihood of treatment with blood they can immediately spring into action to create a presence at the bedside and ensure martyrdom is achieved once all alternatives are exhausted.

Enter the Hospital Liaison Committees, or "HLCs". First emerging in the late 1970s and early 1980s at the direction of the Witness leadership, the goal of an HLC is singular: to enforce the prohibition on blood in the hospital ward by ensuring the "personal choice" of the stricken Witness patient is respected by doctors even if it results in the patient's death.

Earlier this year, a video was uploaded to JW.org - the official Jehovah's Witness website - titled Organizational Accomplishments - A Loving Provision for Times of Distress. The five-minute video used a succession of talking heads to praise the work of HLCs. "Our role is to help doctors and Jehovah's Witnesses to come to a consensus on how to treat the patient without breaking God's law," explained Stephen Whiteman, a Hospital Liaison Committee member from Canada.

But consider the case of Éloïse Dupuis, a 27-year-old Jehovah's Witness who died giving birth to her first child in Canada in October 2016.

If you speak to Jehovah's Witnesses who knew Éloïse, including her father (a prominent Witness elder) and her widower, they will tell you she made the personal choice to refuse treatment with blood when complications arose. They will tell you this choice was made without external interference or coercion.

But Éloïse's non-Jehovah's Witness friends and relatives will tell you a different story. They will tell you of the extraordinary lengths they went to in reaching through to Éloïse in her final hours to convince her to accept whatever treatment was necessary so her son could enter into the world with a mother. They will tell you that on arrival at the hospital after a frantic three-and-a-half hour drive, they found they were barely able to say goodbye to Éloïse in person before being ushered away by a wall of Jehovah's Witness elders.

They had come up against the local HLC.

Commenting on the incident in an interview for CBC Radio, Dr Ian Mitchell of the University of Calgary noted that Éloïse "had many friends outside of her religious community who tried to have access to her, who tried to persuade her to have the transfusion and were blocked by members of the religion". Asked by the interviewer whether by "members of the religion" he meant Hospital Liaison Committee members, Dr Mitchell responded in the affirmative.

The question inevitably arises: If refusing blood transfusions is truly a personal choice on the part of Jehovah's Witnesses, why do HLC elders need to be at their bedside to help them make it? The answer is sobering: refusing blood isn't really a personal choice for a Jehovah's Witness. This becomes painfully obvious when you consult the "eyes only" secret handbook used by elders to police the personal affairs of their congregants.

In the book "Shepherd the Flock of God" - 1 Peter 5:2, elders are informed in Chapter 18 that a Jehovah's Witness is to be "disassociated" (effectively excommunicated) if they "willingly and unrepentantly" accept a blood transfusion. In other words: a Jehovah's Witness may receive blood and avoid being estranged from all believing friends and family if they can somehow convince elders that it was all a mistake and they are sorry. But if elders determine that the treatment was "willingly" accepted, deliberately and without remorse, they can and will arrange for the individual to be shunned; their family relationships within the faith dismantled.

How do these elders gain insider knowledge so they can arrive at far-reaching determinations regarding deeply personal medical matters that should be strictly between the doctor and patient? In the UK, it is because a number of NHS trusts hold the door open for HLC elders to enter hospital wards and observe and consult over all aspects of the patient's treatment. And when they are not lurking at the bedsides of their stricken congregants, HLC elders make fostering cosy relationships with doctors and hospitals a top priority.

These charm offensives take the form of special presentations ostensibly to inform healthcare professionals of the "non-blood alternatives" available to Jehovah's Witness patients so their religious beliefs can be respected. The Powerpoint slide that will somehow never get shown on the hospital conference room's projector is the one containing the small-print: there is no "alternative" for a Jehovah's Witness but to refuse blood if they want to keep their relationships with believing family members intact.

Some would argue that with or without HLC elders inserting themselves in patient care, the decision to refuse blood by the Jehovah's Witness patient is a foregone conclusion. Even if Éloïse's relatives hadn't been bulldozed back into the corridor by men in suits, surely it would have made no difference?

Surely Éloïse's mind was made up?

Perhaps it was. Indeed, Quebec coroner Luc Malouin who investigated the tragedy concluded that, for better or worse, it was down to individual choice. "Every person in Quebec has this freedom of choice," he said in his report. "This freedom has been exercised here in accordance with the rules of law. It is up to everyone to make their choices and to fully assume the consequences."

But doesn't freedom of choice also mean freedom to make a different choice to the one everyone is expecting? Should we anticipate all Jehovah's Witnesses to refuse blood even when the chips are down and the end really is nigh?

In 2012, three doctors, coincidentally also in Canada - Asim Alam, Yulia Lin and Jeannie Callum - published a medical study titled The variation of acceptable blood products and procedures amongst Jehovah's Witness patients. They found that out of 25 Jehovah's Witness patients offered treatment with blood at the Sunnybrook Hospital in Toronto, Canada, there was a spectrum of consent when it came to blood treatments. Most of the blood products mentioned in the report involved blood derivatives that Jehovah's Witnesses are cautiously permitted to accept (the religion offers convoluted reasoning as to which "fractions" Witnesses may receive depending on their individual "conscience," although many will still err on the side of caution with their prospects of eternal life in the balance).

Incredibly, at least one of the 25 Jehovah's Witness patients in the report was recorded as accepting treatment with PRBCs (packed red blood cells). Red blood cells are absolutely prohibited for Jehovah's Witnesses, and yet this individual could apparently bring themselves to make an exception.

The same report mentions one patient accepting platelets (we don't know if it was the same patient) and two patients accepting "fresh frozen plasma". Platelets and plasma are also among the main four blood components (along with RBCs and white blood cells) that Witnesses are prohibited from receiving.

Unsurprisingly, the report's authors noted that "there is substantial variation amongst JW patients regarding acceptable products and procedures". Who knows to what extent HLC presence at the Sunnybrook Hospital affected the figures and whether this "variation" might have been even more stark sans HLC suits?

Needless to say, the Sunnybrook report proves categorically what most of us could perhaps discern intuitively: that not all Jehovah's Witnesses will necessarily always refuse treatment with blood. When death looms imminently and their remaining precious life can be counted in minutes or seconds, there is no telling what an individual Jehovah's Witness might decide. And with so much at stake, the last thing Jehovah's Witness patients in life-or-death medical emergencies need is two elders at their bedside shoving them down the road to martyrdom.

The time for NHS trusts to step in and take action to prevent any possible coercion, intimidation and interference of Jehovah's Witness patients by their religious leaders is long overdue. Nobody is suggesting that Jehovah's Witnesses do not have the right to refuse treatment if, free from undue influence, they genuinely wish to do so. But it must be definitively their decision and not a decision that has been forced on them by their religious community.

Nor am I arguing that ministers of religion should be unwelcome in hospital wards. I am confident that in the vast majority of cases religious leaders perform a positive role in providing comfort and moral support in dire and stressful circumstances. This will doubtless also be true in cases where a Jehovah's Witness elder attends the bedside of a congregant for whom treatment with blood is unlikely to be necessary. However, the Jehovah's Witness prohibition on blood creates a clear conflict of interests when it comes to the role of leaders within that community, and NHS trusts have a responsibility to put the needs and welfare of their patients first by ensuring any decisions on medical treatment are entirely free of coercion or intimidation. They should not simply assume that HLCs have patient care as their priority just because that is how they present themselves.

Neither should it be assumed that it is necessarily the voluntary determination of the Jehovah's Witness patient to request elders at their bedside, whether the elders identify as HLC members or not. The previously mentioned Shepherd book has a chapter titled "Medical Matters" suggesting that congregants "should be reminded" that they "should inform the hospital that [they] would welcome a visit from a minister of Jehovah's Witnesses" if they wish to "receive visits from congregation elders". (And you can imagine the raised eyebrows and suspicions if they were to not "welcome" such a visit.)

Simply put, the situation with Jehovah's Witnesses and blood transfusions is far more nuanced than many understand. Doctors treating a Jehovah's Witness patient may have no idea that they are under threat of estrangement from their believing friends and family if they were to accept a blood transfusion. In this context, it is manifestly not in the interests of the patient to have an already heart-breaking decision further complicated by the presence of men at their bedside tasked with ensuring compliance to religious decrees.

I therefore urge the government and NHS to urgently review the role and involvement of HLCs in the care of Jehovah's Witness patients. If religious freedoms and rights of patients are to be truly respected, this can only be guaranteed in an environment in which doctors are allowed to do their life-saving work without having to reach a "consensus" with two potentially conflicting parties: the patient and their religious leaders.