This week I have a special guest blogger, who dissects a controversial issue, in the medical field.
“Christopher Horn is an Australian-trained Radiation Therapist who has worked in the United Kingdom and Australia in a number of highly specialised clinical roles, including molecular imaging and paediatric radiation oncology. Strongly focussed on the delivery of safe, high-quality health care, he has also advocated for clinical users and patients in the development of medical devices in an international setting. Christopher is an Associate Fellow of the Australian College of Health Service Management with a Masters of Health Management Degree from UNSW, and is currently undertaking a management residency program.”
Disclaimer: This does not constitute legal advice. Views are strictly the author’s own and do not reflect those of his employer.
Parental primacy in paediatric treatment decision making and the ethical legitimacy of intervention by the state (2010)
A three year old boy has presented at a paediatric unit and been diagnosed with leukaemia. Proposed treatment requires several courses of chemotherapy that will put the boy’s immune system into such a compromised state that he will require stem cell rescue and blood transfusion. Medical consensus is that his chances for survival are approximately 70% but without this treatment he will certainly die of his condition. His parents, devout Jehovah’s Witnesses (JW), refuse to consent to this treatment as it goes against their understanding of God’s teachings and they believe will cause God to forsake their child and, if they consent, the church to potentially ex-communicate the entire family (Muramoto, 1999).
Serious difficulties exist in paediatric oncology decision making even without the added consideration of religious preferences. Even when parents are presumed by weight of legal and ethical opinion to have priority in decision making, there is sometimes a role for clinicians to challenge that primacy (Whitney et al, 2006).
Sliding scale of consent
This paper is an ethical rather than a legal assessment, however legal examples from the United States (U.S.), United Kingdom (U.K.) and Australia will be utilised in discussion to demonstrate points.
Medically speaking, the more mature a child’s reasoning is, the more their preferences should be considered. When necessary, this may require the clinician to advocate for the patients wishes (Whitney et al, 2006). Courts in the U.S. judge a minor’s capacity to consent on factors including age, experience, degree of maturity, demeanour, judgement skills, and separateness from parents. The child needs to be able to understand the purpose and alternatives to treatment, the risks, and both long and short-term consequences. They have almost never recognised competence in a child of less than twelve years (Hickey, 2007).
Where the child is not capable of making decisions, parents are assumed to be a surrogate decision maker, with the assent of the child where possible (Hickey, 2007). The situation is similar in Australia, and is applicable with the child in this scenario.
In matters of child welfare, we must ask three key questions:
1. Who is the ultimate arbiter of a child’s interests?
2. How do the religious beliefs of the parent fit in?
3. Is the current legal framework adequate? (Humphrey, 2008)
The first two of these are the focus of this paper; the third requires legal analysis and will not be discussed.
Freedom of conscience is at the heart of our social values and patient autonomy is increasingly valued and recognised as an important aspect of health care (Ubel, 1999), as we have moved from paternalistic ideals of physician-patient care to shared decisions making models (Tauber, 2002).
Most countries give parents legal rights to make treatment decisions regarding their children, but these rights are usually rebuttable by the courts if the child’s right to life is threatened. Over-riding the parents may be justified only when there is certainty of outcome. That is, unanimous medical opinion that the child will die or be severely and irreversibly injured (Dare, 2009).
Religious autonomy of the child is another issue. To simplify this discussion, at three years old, we will assume the child has not made a choice to practice religion as per the simplified case of a neonate (Dare, 2009).
Parental rights and duties
Whilst parents have certain presumptive rights, Whitney (2006) notes that the “parents’ ethical and legal authority over their child’s medical care is a function of their responsibility to promote their child’s health related interests”. Despite these presumptive rights, if the child requests treatment and the parents refuse, the welfare of the child, represented by the state, will supersede those of the parents (Hickey, 2007).
Difficult cases arise when the religious and social beliefs of the parents interfere with a child’s welfare. Here, the practitioner must look to the legal system for guidance (Hickey, 2007). Simply obtaining a court-order however, without due care being paid to the parent’s position, can cause excess damage to the family unit and the child (Humphrey, 2008).
Welfare of the child versus parental autonomy
As an example, the requirements are clearly laid out in the United Kingdom regarding treatment of the children of JW parents. The treating physician is required by law to administer any necessary blood transfusions without requiring the parent’s consent or a court order (Wilson, 2005). Three areas of British legislation cover this treatment of children. Acts of Parliament supersede the rulings of any courts and state that: anyone involved in a child’s care must ensure that the child’s needs are the priority (Children’s Act 1989), and; the right to life must be protected and special steps need to be taken with respect to protecting children from anyone not acting in their best interests, even the parents (Human Rights Act 1998 and the Convention on Human Rights).
The other two areas are case law and public policy, which also determine that there is a need for the state to protect children. Effectively, the child cannot be deemed to have made a conscious decision to practice religion. Therefore, under current law if a blood transfusion was not given and the child suffered morbidity later in life they would have grounds on which to sue the health service for failing in their mandated duty of protection (Wilson, 2005).
The Australian legal position is that the clinician is within legal rights to give transfusion “as long as the child has a condition that without such transfusion the child is likely to die” (OPA, 2004). For our scenario, case law in Australia indicates that the parent’s wishes are usually over-ridden and courts sometimes invoke parens patriae, making an order for the procedure to be undertaken (Humphrey, 2008).
The argument for presumption of parental autonomy
There are five major arguments for the presumption of parental autonomy:
1. Concern for their child’s welfare is enough to motivate parents to make the best choice (Dare, 2009) (Humphrey, 2008).
2. The burden of the consequences must be borne by the family (Whitney et al, 2006). Consequences may range from de-stabilisation of the family unit to financial burden brought about by care requirements of the child (Wilson, 2005). Further, the loss of a child is something the family will have to live with (Dare, 2009).
3. The child’s interests are best known to the parents due to their privileged access. In the case of a very young child, one could argue that the parent’s have little more idea than anyone else (Dare, 2009).
4. That the disutility caused by enforced court orders is detrimental to society and other parents by turning the patient-physician relationship into an adversarial one, leading to distrust (Humphrey, 2008).
a. if we don’t respect the parent’s right to decide (even where we do not recognise a valid right) we risk them not bringing their children in for medical attention (Dare, 2009)
b. Time delays involved before beginning what is usually urgent treatment (Humphrey, 2008).
The argument for state intervention
The most common, and at face value the most cogent argument against state intervention, is that people are free to practice their religion. However, there is a fundamental difference between a right to religious beliefs (freedom of conscience) and a right to religious practice (freedom of action). Whilst a breach of the former is never justifiable in a liberal society, the latter is inconsistent with a society that rejects the initiation of force between its members. Freedom of action, up to the point of harming others, when considered in our context, indicates that “the right to practice religion does not include the right or liberty to expose the community or the child to ill health or death” (Humphrey, 2008). Simply stated, the right of one person to practice their religion is superseded by the right to life of another (Dare, 2009). The law in the United States is even clearer in specifying that a religious freedom does not entail allowing harm to come to minors (Hickey, 2007).
The following points will address the prior arguments from the point of view of the state.
1. Clinicians also have the interests of the child at heart. We cannot assume that any person, even the parents, have the child’s interests solely as priority. Well motivated yet clinically ignorant parents can make mistakes about what is in the child’s best interest. The parent’s impressions of a child’s capacities can lead to undue weight being given to avoidance of suffering in the short term for the long term gain (Dare, 2009) suggesting caution in the use of this information. The parents may be submerged in the emotion of the situation, whereas the state, represented by the court, is invariably more objective in it’s decisional capability (Humphrey, 2008)
2. That a family would be the ones to deal with the grief of a child’s death does not lend weight to an argument about the sanctity of a child’s life. If a child whose large burden of post treatment care would need to be met for a good prognosis, some weight initially swings back in favour of parental autonomy. But since we would not expect that this is adequate argument for withholding care, the prognosis is the important aspect, not the burden. It is often assumed that children perform better with a supportive family, but typically, once the parent’s wishes have been over-ridden they continue to support the child (Dare, 2009).
3. What is the nature of the privileged information that the parent’s have, and is it of clinical significance? The child’s close relationship to the parent can result in bias due to feelings on either part of guilt, helplessness, hope or desperation or even unwillingness to disagree. If we seek input to decide what decision the patient would make as a mature reasonable adult then we may have something, though caution should still be applied as children change rapidly in their behaviours and dispositions as they grow (Dare, 2009).
4. There are societal repercussions for usurping parental authority; however there are other interests that need to be recognised. First, the value of human life; second, the protection of innocent parties unable to protect themselves; and third, the endurance of a productive and self-perpetuating society (Humphrey, 2008). One could argue that there is no less damage done to society if the state were not to champion the child’s welfare against the parent’s claim.
5. To allow a right of decision that is perceived as invalid goes against standards of professional conduct and the commitment of health professionals to uphold the values of beneficence, non-maleficence and justice, for the sake of surrogate decision maker autonomy (Beauchamp & Childress, 1994). To require that of healthcare professionals is no less a usurpation of their right to professional and personal integrity. For the time delay argument, at least in this case where the parent will choose what is effectively an endless time delay that leads to the death of the child, attempting to get permission to treat in time is always going to trump inaction.
The parent’s loss of autonomy can have a large impact. The trend in courts in the United States is toward more favourable rulings for parents who have rejected treatment for reasons other than religion (due to a recognised process of reasoning), as opposed to JW parents’ unquestioned religious practice. Humphrey (2008) argues that this is a false argument as children benefit from their relationship with their parents whether they are religious or not.
The narrow legal assessment of impact fails to appreciate the importance of the family unit, only considering the ‘psychological and social implications for the child’ and not the realistic bonds that the child shares with their parents. Even fewer rulings acknowledge the importance of the family ties to the religious community and the damage that may result from the decision. JW parents have, on occasion, refused to care for a child after transfusion (Humphrey, 2008).
Frankel (1977) on the other hand describes situations where parents have been relieved after the decision was taken out of their hands, allowing them to refuse consent and still have their child treated. Increasingly, there are instances of ‘relief of burden’, with pardoning by the congregation being granted for un-consented or unknown blood transfusions (Hickey & Lyckholm, 2004).
As a minimum, state intervention is only warranted in cases where medical opinion unanimously deems that not treating will result in serious and irreparable harm to, or death of, the child; and that the child’s life after intervention will be of sufficient quality to be worth living (Humphrey, 2008).
To answer the two questions of the child’s welfare: after considering the arguments, it is apparent that in our current societal context the rights of the child will continue to be protected by state intervention. This is both beneficial, and yet costly to the community and individuals involved. The religious practices of the parents have been deemed secondary to the child’s well-being. However, in the scope of court judgements, the place of the parent’s religious beliefs and the effect of the ruling on the family unit need to be given proper weight. Humphrey (2008) also points out the importance of restraint on autocratic and arbitrary restrictions on parental autonomy in state interventions.
Clinically, Muramoto (1999) notes the importance of an individualised approach to patients, particularly because of diverse opinions on different aspects of transfusion. Clinicians in the United Kingdom in particular, are recognised for exhausting all medical options before insisting on transfusion of minors (Humphrey, 1998).
Follow Christopher Horn on TWITTER @healthandlaw
Related article: ‘Teen Witness must have a transfusion, rules judge.’
Beauchamp, T.L. & Childress, J.F. (1994) Principles of biomedical ethics 4ed, New York: Oxford University
Dare, T. (2009) Parental rights and medical decisions. Pediatric Anesthesia, 19, 947-952
Frankel, L.S., Damme, C.J. & Van Eys, J. (1977) Childhood cancer and the Jehovah’s Witness faith. Paediatrics, 60, 916-921
Hickey, K. (2007) Minor’s rights in medical decision making. Journal of Nursing Administration: Healthcare Law, Ethics, and Regulation, 9, 3:100-104
Hickey, K.S. & Lyckholm L. (2004) Child welfare versus parental autonomy: medical ethics, the law, and faith-based healing. Theoretical Medicine, 25, 265-276
Humphrey, T. (2008) Children, medical treatment and religion: defining the limits of parental responsibility. Australian Journal of Human Rights 14, 141-169
Maylon, D (1998) Transfusion-free treatment of Jehovah’s Witnesses: respecting the autonomous patient’s rights. Journal of Medical Ethics, 24, 302-307
Muramoto, O. (1999) Recent developments in medical care of Jehovah’s Witnesses. Western Journal of Medicine 170, 297-301
Office of the Public Advocate Practice Guidelines 7. Jehovah’s Witnesses and blood transfusions (2004) Available at: www.publicadvocate.vic.gov.au
Tauber, A.I. (2002) Medicine, public health, and the ethics of rationing. Perspectives in Biology and Medicine 45, 1:16-30
Ubel, P.A. (1999) The challenge of measuring community values in ways appropriate for setting health care priorities. Kennedy Institute of Ethics Journal 9, 3:263-284
Whitney, S.N., Ethier, A.M., Fruge, E., Berg, S., McCullough, L.B. & Hockenberry, M. (2006) Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. Journal of Clinical Oncology 24, 1:160-164
Wilson, P. (2005) Jehovah’s Witness children: when religion and the law collide. Paediatric Nursing 17, 3:34-37