Rejecting the Fluid of Life

On 21 September 2006, Abbott J of the Irish High Court made an ex parte order that an African woman from the Democratic Republic of the Congo, who spoke limited English, and professed to be a Jehovah’s Witness, receive a blood transfusion against her wishes.^[710] The order authorised the use of restraint in the event that she resisted.

Although the case is over six years old, and occurred in another common law jurisdiction with a separate strain of jurispolitics^[711] underpinning maternal-child relations, this particular case is of interest because on the facts, it forced the court to consider nearly all the complex issues facing courts in the common law world hearing matters involving refusal to consent to blood transfusion on religious ground: autonomy, capacity, consent, “best interests of the child”, paramount interest in preserving life, respect for religious beliefs, and discrimination on the basis of ethno-religious beliefs.

There is much about Fitzpatrick & Anor v K & Anor (K’s case) which can be of use to Australian courts in interpreting similar situations.

Blood transfusion is a relatively common therapy, used to treat a range of conditions including blood loss caused by trauma, such as childbirth and postoperative trauma, certain types of cancers and complications from other infections. The Australian Red Cross estimates that one in three of Australia’s 23 million citizens will require a blood transfusion at some point, and yet only one in 30 are donors, and that more than 27 000 donations are required per week, or 1.4 million donations per year.^[712] For some patients, transfusion is used to treat an acute condition, requiring one or more units of blood to rectify a deficiency that, once addressed, is unlikely to recur — for example surgery requirements or trauma.

In spite of the well-established history of transfusions as a therapy, there are some patients who refuse to consent to blood transfusions. Two of the more common reasons for refusal are: 1) concern about the safety of transfused blood products, particularly based on concerns around diseases such as AIDS, hepatitis, and other blood-borne infections; and 2) religious beliefs, most notably when the proposed recipient is a member of the Jehovah’s Witnesses.^[714] This chapter, with its focus on ethno-religious exceptionalism, examines the latter reason for refusal, and the law’s response to it.

For many people, the refusal of Jehovah’s Witnesses to accept blood transfusions or perform military service is the limit of their knowledge of the religious beliefs of this group.^[715] The “exception” is the “identity”. It is estimated that there are approximately seven million Jehovah’s Witnesses worldwide,^[716] including 1.5 million in Europe, 1.2 million in Africa, three million in the Americas, and half a million in Asia and the Middle East.

Since 1945, Jehovah’s Witnesses have been instructed to abstain from blood transfusion, as it is interpreted as contrary to their religious teachings.^[717] This view is largely based on interpretation of Acts 15:22 (eat no food that has been offered to idols; eat no blood; eat no animal that has been strangled); Genesis 9:4 (The one thing you must not eat is meat with blood still in it; I forbid this because the life is in the blood); and Leviticus 17:13-14 (“If any Israelite or any foreigner living in the community catches an animal or bird which is ritually clean, he must pour its blood out on the ground and cover it with dirt. The life of every living thing is in the blood, and that is why the LORD has told the people of Israel that they shall not eat any meat with blood still in it and that anyone who does so will no longer be considered one of his people”).^[718] Since 1961, accepting a blood transfusion, even under circumstances of life or death, has attracted the sanction of “disfellowship” — punitive exclusion from the congregation.^[719]

There has been a perceived softening of this approach in recent years: while transfusion of whole blood, red cells, white cells, or plasma remains prohibited by mainstream Jehovah’s Witnesses, acceptance of other products derived from donated blood is an issue which is left more to the personal choice of the patient.^{[720] [721]}

Clinical studies to date have demonstrated that Jehovah’s Witnesses experience greater incidence of morbidity and mortality than the general population in some, but not all, of the contexts examined.^63,64

Critical to this chapter is consideration of three particular scenarios: the emergency patient who requires an urgent blood transfusion to replace lost blood; the child who requires blood transfusion as part of treatment regime for cancer, or an immune disorder; and, as in K’s Case,^{[722] [723] the delivering mother who has a post-partum haemorrhage.}

Prima facie, providing any medical treatment to a patient without lawful justification constitutes a battery in tort law.^[724] Lawful justification includes treatment provided under emergency circumstances, where the threat to the life or health of the patient necessitates immediate intervention,^[725] or provision of consent by the patient, or a person authorised to make decisions on their behalf.^[726]

In the case of emergency, therefore, the law should appear to be fairly straightforward. Lawful justification of emergency or necessity in this context has been reflected in legislation in some jurisdictions.^[727] It may, however, become complicated if the practitioner becomes aware that the treatment they are, or are planning, to administer, is in conflict with the express wishes of the patient.^[728]

Many Jehovah’s Witnesses carry cards on their person expressing their opposition to blood transfusion, while others have executed other types of Advanced Directive appropriate to the legislation in their home jurisdiction. In the event that a practitioner becomes aware of the existence of such a directive, the lawful justification or necessity will cease to operate in their defence.

Cases that attract media attention in this context have more traditionally involved children, where the lawful justification of emergency has not been appropriate, or other questions about the capacity of the person to provide consent.

Under law, the wishes of an informed, competent adult patient must be respected — including a refusal to accept treatment, even if their reasons for doing so are, as Lord Donaldson stated in Re T, “rational, irrational, unknown or even non-existent”.^[729]

What, then, are the requirements of valid consent?

To understand consent, and appreciate its importance, it needs to be borne in mind that the principle of autonomy is a fundamental human right, reflected in both law and medical ethics.

Competent agents at law are those who can demonstrate sufficient understanding to be able to exercise their agency. Traditionally, this has meant adults with reasoning capacity, meaning that children, and adults with intellectual, cognitive, or mental impairments have not possessed competency, necessitating that others with competency make decisions on their behalf.

Competence alone, however, is not enough for valid consent. In addition, the patient must understand the nature of what they are consenting to — merely providing a carte blanche authorisation to a doctor to do whatever he or she thinks is best will not suffice. In some jurisdictions this has given rise to a notion of “informed consent”. In Australia this term has found favour in some legislative instruments, but was not preferred by the High Court in the landmark decision on valid consent to medical treatment in Australia, Rogers v Whitaker. In that case, the court felt that “informed consent” focused on the mechanics of providing information to the patient as a measure of consensual validity, rather than on the comprehension by the patient of the information provided.^[731] The same case emphasised that the patient, rather than the doctor, is the focus of any enquiry into consent to medical treatment, and that provision of information of importance to the patient was the critical consideration, rather than information that the individual practitioner, or even a “body of medical men”,^[732] would consider relevant. Provided the patient understands the nature of the treatment, and the risks and benefits associated with accepting or refusing the treatment, their decision is legally valid.

In the event that a decision to refuse treatment is to be challenged, it must be on the basis of lack of capacity.^[733] If the patient has appointed an Enduring Power of Attorney,^[734] they will probably have already nominated someone to act as a decision-maker on their behalf.

Provided the patient had capacity at the time they executed these directions, and provided the treating physician is aware of their existence and contents, the doctor is required to respect them, in the absence of clear evidence that the patient had undergone a change of heart prior to their loss of capacity.^[738]

In the event that the capacity of the patient is questionable, and they have not executed an Enduring Power of Attorney of Advanced Health Directive, a guardianship order should be sought. In response to application brought by interested persons (commonly family members, friends, or care providers) a guardianship tribunal is authorised to make a finding about the capacity of the patient, and appoint a guardian to make decisions on their behalf in the event that they are lacking capacity.^[739] As with Enduring Powers of Attorney, there are some decisions that the guardian is unable to make, under the legislation.^[740] Furthermore, the tribunal appointing the guardian can impose limits on the authority of the guardian as the circumstances require.^[741]

In the case of a Jehovah’s Witness patient lacking capacity, without a valid advance directive, but requiring a blood transfusion, decision-making capacity may be vested in either the Attorney or Guardian, or the Tribunal, depending on the legislation for the relevant jurisdiction.^[742]

The situation with respect to children is more complex by far.

In the event that a Jehovah’s Witness parent withholds consent for a blood transfusion for his or her child, the care provider can seek an order of the court authorising the transfusion to proceed. Even in the case of a child who is mature enough to be deemed “Gillick” competent^[747] — capable of making valid decisions about their treatment based on understanding of the consequences — the courts have demonstrated their willingness to disregard the express wishes of the child when they feel they are inconsistent with the best interests^[748] of the child. Such was the case in Royal Alexandra Hospital for Children v J & Ors,^[749] where the patient in question was a 16 year old male Jehovah’s Witness with acute lymphoblastic leukaemia, with a 50 per cent chance of dying within 24 hours in the absence of a transfusion.^[750]

The courts will temper this with consideration of the best interests in a holistic sense, including the impact any transfusion would have on the parents’ acceptance of the child. It is notable that some parents, although unwilling to consent to transfusions themselves, indicate that they will not excommunicate the child after the child receives the transfusion (as is, nominally at least, required by the teachings of the main Jehovah’s Witness faith).^[751] The courts will also, where appropriate, include a requirement that all other options be tried before the transfusion is performed; the transfusion is thus authorised, but only as a last resort.^[752]

This provides a clear indication of the courts attempts to recognise the importance of religious and social practice within the Jehovah’s Witness community, while balancing it against the paramount interest of preserving the life of the child, who may in fact not have been permitted any choice in the matter of religion.

Another class of case attracting significant publicity, but limited attention from the courts, is that of Jehovah’s Witness mothers who experience complications, such as post-partum haemorrhage, associated with childbirth. Ironically, this is the class of patients for whom the most clinical data exists: studies demonstrate that Jehovah’s Witness women who refuse transfusions for treatment of childbirth-related complications experience increased risk to life and health than their non-Jehovah’s Witness counterparts.^[753]

All of which brings us back to the somewhat anomalous K’s case. The patient was conscious and, apparently, alert after the birth of her baby, and her refusal seemed, on the face of it, based on religious beliefs. Prima facie, her wishes should have been respected, and the transfusion not performed. However the hospital apparently felt that there were issues surrounding her capacity: she did not speak English, and relied on a friend, who later was identified as a relative, to translate, and there was great confusion about both her religious status, and the whereabouts of the baby’s father. Questions about her understanding, and the validity of her consent, may have been reasonable; however use of a professional translator to overcome any comprehension issues affecting the validity of her decision may have been more appropriate than seeking a court order disregarding it. Ultimately, the court found that she lacked capacity, although this was determined at a later hearing held after the initial ex parte order was made. The critical issue in making the ex parte order, it appears, was the best interests, not of the mother, but of her newborn son.^[754] In making the ex parte order, the court privileged the needs of the baby, whom it believed, mistakenly as was later established, would have been left parentless in a foreign country had the order not been made, and the patient died of blood loss.

This decision triggered significant public criticism, and, although the issuing of the order was upheld in a later review, the judgment avoided considering the question of whether it was appropriate to privilege the rights of the baby over those of the mother, but made it clear that the Court wanted to avoid similar cases in future.^[755] It raises significant questions about application in future cases. Did the perceived “single parent” status of the mother at the time the ex parte order was made make her religious beliefs less significant, on the basis of her marital status? What role do the mother’s wishes have? Would it have been different if her refusal was based on fear of contracting an infection from the transfusion, for example?

It is also at odds with a similar story reported just 12 months later where the refusal to consent to transfusion of a recently-delivered Jehovah’s Witness mother of twins was respected, and the mother subsequently died^[756] — unarguably also a less than satisfactory outcome.