Did Bethany have a choice?

The father of a Jehovah's Witness who lost her life after refusing a blood transfusion is fighting back

National Post/May 28, 2009

On Monday, the Alberta Court of Appeal required two cancer physicians and Edmonton's Cross Cancer Centre to defend the manner in which they cared for the leukemia-stricken teenager of a Jehovah's Witness family. Importantly, the court examined whether the Watchtower Society, the main legal entity used by Jehovah's Witnesses, should be held accountable for obstruction of proper medical treatment.

This saga began in the winter of 2002, when a 16-year-old Calgarian, Bethany Hughes, urgently required a blood transfusion. Bethany and her mother refused because they adhered to the Watchtower Society's blood ban. With Bethany's death approaching, an Alberta court granted an order requiring blood transfusion, and Bethany subsequently received lengthy chemotherapy and supportive blood transfusion.

In June, 2002, Child Welfare released Bethany from its care. The girl's father, Lawrence Hughes, alleges in court documents that the society then took Bethany from Calgary without telling him; limited her treatment options at the Cross Cancer Centre so that she did not receive the best available therapeutic and palliative care; and refused to disclose Bethany's location until after her death two months later.

Mr. Hughes, who had refused to accept the society's Biblical interpretation regarding blood transfusion, contends that the religious lawyers (who are also priests) were instrumental in this rupture of his family's private life.

The Watchtower Society, a highly litigious organization, has brought numerous legal motions in an apparent effort to prevent the father's case from being heard on its merits. The organization even threatened Mr. Hughes's lawyer personally by applying for an award of court costs to be paid by the lawyer himself. Though unsuccessful, such demands have since made it almost impossible for Mr. Hughes to find legal counsel.

After a hearing two weeks ago, at which Mr. Hughes represented himself against not just lawyers but a lawyer for the lawyers, the court on Monday permitted Mr. Hughes to proceed on the essential issues:Who authorized the medical treatment? And was the treatment negligent?

The Watchtower Society has argued that either the teenager or her mother gave informed consent to the Cross's treatment. But the very heart of Mr. Hughes's claim is that no one, least of all Bethany, could have known what Bethany wanted.

This is because, in April, 2002, a judge had emphatically ruled that Bethany no longer had a free, informed will. The judge lamented the "pressures and influences that have been brought to bear on her in the last few weeks to maintain her position on blood transfusions." Even though Bethany was gravely ill, the court held that religious adherents had prevented Bethany from being "allowed to look death in the face." The court said that Bethany was the subject of "undue influence" that "has taken away her ability to make an informed choice."

The judge further cautioned authorities about Bethany's future care, and advised them "to be mindful of the pressures that are and may continue to be placed upon her."

Such pressure is familiar to doctors. Many physicians have told us that they realize patients associated with the Watchtower Society have only two choices: Accept blood and lose family and friends, or refuse blood and risk their lives. These physicians have also said that they fear Watchtower Society litigation if they transfuse a religious patient who needs blood.

Now, the physicians and the Cross Cancer Centre are likely to be asked in court what they did to protect Bethany from such undue pressure; and why they did not seek consent for medical treatment from the one family member who resisted Watchtower Society pressure: her father.

In a lonely and courageous battle, Mr. Hughes has successfully forced the courts to hold the Watchtower Society and medical defendants accountable for their actions. But whether an unrepresented, bereaved and shunned father's lawsuit will be successful remains to be seen.

No matter the outcome for Mr. Hughes, judicial guidance is sorely needed now that physicians are facing litigation on both sides -- from those who wish religious compliance and from one litigant who objects to religious intrusion in medical choice. The actions of the Watchtower Society are dangerous and costly; when a patient who needs blood is from a Jehovah's Witness family, a disproportionate amount of physician time and publicly funded hospital and court effort are consumed.

Most health care providers wish to honour patients' authentic religious beliefs. But undue religious pressure on patients and their caregivers may make it almost impossible to know and act upon what a patient truly wants.

In Watchtower Society cases, medical professionals desperately need the help of new and clearer law to give medical care consistent with their patients' interests, desires and beliefs.

Dr. Juliet Guichon holds a doctorate in law and is senior associate inthe Office of Medical Bioethics at the University of Calgary. Dr. Ian Mitchell is a professor of paediatrics and bioethics at the University of Calgary.

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