Bioethical mediation facilitating emotional life-and-death decisions

Neonatal critical care decisions often entails complex life-and-death decisions and involves the patient, family, health carers and loads of emotions, especially when parents and health care providers do not agree on the appropriate course of treatment.

The following two cases serve as good examples of the complex nature and emotional stress these decisions can cause:

In re B (a minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421 a baby girl was suffering from Down’s-syndrome as well as a severe intestinal blockage, which is a common symptom of Down’s-syndrome. To save her life doctors recommended surgery to remove the intestinal blockage. However, her parents were of the believe that it was not in the best interest of the child to operate on her due to the fact that she would remain severely physically and mentally disabled, should she survive.

In re A (children) (Conjoined Twins Surgical separation) [2001] 2 WLR 480 involved twins that were joined at the pelvis from birth. Separation surgery would result in the weaker of the twins not surviving, while no surgery would mean that neither of the twins will survive. Their parents, devout Roman Catholics, believed it would be a sin to actively cause the “killing off” of one of the twins by means of separation surgery and refused their consent to such surgery which eventually lead to the death, albeit natural death according to the view of the parents, of both children.

The fact that neonates, babies or small children are involved complicates the choice of any medical treatment as the child is not in a position to communicate his or her wishes and relies on surrogates such as parents, guardians or caregivers to make decisions on behalf of and in the best interest of the child. Section 129(1) of the Children’s Act 38 of 2005 specifically stipulates that consent is needed before a child may be subjected to medical or surgical treatment. Section 129(4) requires the consent of either the parents, guardians or caregivers for medical treatment other than surgery for which only parents or guardians may consent in terms of section 129(5).

In these consent provisions the child’s parental care rights, as enshrined in section 28(1) of the Constitution of the Republic of South Africa 1996, find practical implementation to safeguard the well-being of the child.

If a parent or guardian refuse to give his or her consent, or is unable to give consent due to injury or mental health issues, for the medical treatment of a child, the High Court or Children’s Court may be approached in terms of section 129(9) of the Children’s Act to obtain the court’s consent to such treatment instead. These court orders have historically been the preferred (and known) route in cases of disagreement between parents and health care providers regarding the treatment of their child.

It is important to note that courts will only interfere with the decision making of parents or guardians if they believe that it is in the best interest of the child, as was shown in the case of Hay v B 2003 3 SA 492 (W) in which the parents opposed a court application by Dr Hay to administer a blood transfusion. Notwithstanding the fact that blood transfusions were against the religious belief of the parents, the court found that this treatment was in the best interest of the child, that the child’s best interest was of paramount importance and that the child’s life outweighed the parent’s right to religious freedom. The court then ordered that blood be administered to the child, which transfusion saved the child’s life.

Two years after the Hay-matter, section 129(10) of the Children’s Act provided clarity about parents’ religious beliefs and stipulated that their beliefs may not trump the best interest of the child who requires medical treatment or surgery.

This child centred approach was first introduced in Kaiser v Chambers 1969 4 SA 224 (C), confirming the principle that a child’s rights are of primary and paramount importance as envisioned in article 3 of the United Nations Convention on the Rights of the Child 1989, article 4(1) of the African Charter on the Rights and Welfare of the Child 1990 and section 28(2) of the South Africa Constitution.

However, this “best interest” standard is often dependant on the subjective opinion of the surrogate decision makers of what is in the best interest of the child and may lead to disputes between parents and health care providers. Involving children, family, critical care decisions and time sensitive medical treatment, these disputes are often loaded with emotion and may there not be enough time, resources or energy to follow the conventional legal routes towards finding a solution. Under these circumstances biomedical mediation provides a quick, emotionally sensitive and specialised method to effectively resolve critical care disputes involving children and surrogate decision makers.

The main difference between conventional mediation and bioethical mediation is time constraints. Bioethical mediation involves medically and emotionally complex life-and-death decisions that must be taken in a matter of minutes. In these circumstances it is advisable to use the dual method of mediation where both a health care provider with specialised knowledge of the field in which the dispute arose and an attorney specialising in medical law and/or bioethics mediate the dispute between the parties. The mediators’ respective specialities are of crucial importance as there will be precious little time in which to mediate the situation and come to a mutually agreeable decision. There will simply be no time to get the mediators up to speed regarding the medical and legal issues at hand.

Otherwise bioethical mediation is based on the same foundational principles as conventional mediation: autonomy of the surrogate decision makers on behalf of the child; prevention of intentional harm by health care providers (non-maleficence); taking positive steps to promote the best care for the patient (beneficence) and treatment that must be fair, equitable and impartial for all people (justice).

Bioethical mediation already finds successful application across Europe and America with one of the prominent voices in bioethics, the Nuffield Council on Bioethics (UK) recommending that bioethical mediation should be extended to critical care decisions for its potential.

In South Africa the way for bioethical mediation is already paved by sections 49, 69 and 71 of the Children’s Act in which the legislator intended that child-centred disputes must be mediated instead of going to court, the Magistrate’s Court Act that provides for disputes to be referred to mediation before commencement of litigation and section 70 of the Consumer Protection Act 68 of 2008 according to which consumer disputes regarding the quality of medical services may be referred to mediation.

Maybe it is time to follow the road less travelled.

By Marietjie Botes
Biotech-law twitter: @Marietj72675939