‘It is difficult to imagine a more significant decision… than one that could lead to the termination of pregnancy against her wishes.’
Decisions around treatment in pregnancy have the potential to be some of the most difficult health issues women will face, and termination of pregnancy can be one of the most challenging and emotive decisions of all.
An adult woman is presumed to have capacity to make choices regarding her treatment, whether or not such choices are thought to be unwise by her treating team, and whether or not the foetus is endangered. Further, capacity to consent to or refuse treatment is considered on a sliding scale – a woman with a learning disability may have capacity to consent to a blood test but not to amniocentesis, which carries greater risk to the foetus. In the case of more routine treatment lack of capacity is unlikely to pose much difficulty.
But what of more serious treatment decisions and those women who, for whatever reason, are lacking in capacity to make such choices? What happens when the decision has life-altering consequences for the woman and/or her unborn child?
The courts of NSW were recently tasked with the considering the very difficult matter of whether a woman should be forced to have a termination against her will. Miss DXI was 22 weeks pregnant, had an intellectual disability, and was refusing treatment for severe pre-eclampsia and renal failure. If the pregnancy were to continue she was at risk of stroke, seizures, cerebral haemorrhage and possibly death. She was advised that no further escalation of treatment was available and that a termination of the pregnancy was necessary to avoid the potential for very serious complications. Despite the danger posed to her health she refused.
Miss DXI’s treating doctors approached the NSW Civil and Administrative Tribunal (‘NCAT’) requesting that it provide consent to the termination on her behalf. As termination of pregnancy falls within the definition of ‘Special Health Care’ under the Guardianship Legislation, this course of action was entirely appropriate both to ensure the decision was properly arrived at, and also to protect the health providers from criminal and or civil consequences. NCAT determined that Miss DXI had capacity (in which case there was no jurisdiction for the Tribunal to compel treatment) and hence could continue with the pregnancy.
The following day, in light of a deterioration in Miss DXI’s health and concerns with the NCAT ruling, the Local Health District approached the NSW Supreme Court for an emergency hearing to quash NCAT’s decision and make a declaration under its inherent jurisdiction that she was lacking in capacity and the termination could lawfully proceed in her best interests. Further evidence as to Miss DXI’s capacity that was not made available to NCAT was adduced. The relief sought from the Court was granted.
The fact that NCAT and the NSW SC disagreed as to Miss DXI’s capacity to make treatment decisions is indicative of just how difficult these assessment can be, and also how important providing the deciding body with the relevant information is.
There is scant case law on the subject in Australia; however other jurisdictions have produced similar decisions that are likely to be persuasive. In England and Wales the Court of Protection (entrusted with making serious treatment decisions on behalf of incapacitated adults) ordered that it would be lawful for a hospital to carry out a termination where the patient was lacking capacity due to a recent serious head injury. In that case the fact that the patient had expressed a wish to terminate the pregnancy prior to becoming incapacitated, in addition to having received the head injury at the hands of her partner, was highly relevant to the consideration of what was in her best interests.
In contrast, the case of SB (again in the Court of Protection) dealt with a woman who actively sought a termination whilst suffering from an acute bipolar episode. There the court found that, despite her mental illness and having changed her mind after being hospitalized for it, she was able to make rational decisions regarding her pregnancy and hence could choose a termination.
When faced with such a dilemma the health provider should undertake and carefully document the following:
- Identify any potential issues early in the pregnancy to allow appropriate discussions and consultations to take place.The later in the pregnancy, the more medically risky and difficult these decisions become.
- Is there a valid future or advance directive that specifically covers the situation at hand? If so that must be adhered to. Note that termination is not a matter that an appointed guardian can consent to on the incapacitated woman’s behalf and the decision to terminate must be brought to the state Civil and Administrative Tribunal or Supreme Court.
- Is the woman likely to regain capacity and can the decision wait until then?The courts are unlikely to make such a serious ruling where it can be shown that the woman may recover and have the ability to make the decision for herself within the window for treatment.
- Is the risk of harm remote or a mere possibility?In such cases a court would again be reluctant to order a termination in anticipation of the woman becoming ill.This is a balancing act and the health provider needs to weigh up the likelihood, severity ands timing of the potential illness with the gravity of the decision to be made.An emergency application for urgent consent or orders can be made in the event the illness does materialise.That said, it would not be prudent to allow the situation to deteriorate significantly before seeking adjudication.
- Is the proposed treatment genuine ‘emergency treatment’ (where there is no time to consult the courts) that is necessary to preserve life or prevent serious damage to health?In a genuine emergency, such as a placental abruption involving catastrophic blood loss, the health provider must act in the woman’s best medical interests to preserve her life, regardless of whether this results in the termination of the foetus.
- Prior to approaching the court the hospital should carry out and carefully document the following:
- Involve the patient in discussions regarding the treatment, and attempt to understand why she has taken the decision she has.The law requires that she have maximum participation in the decision even if she is lacking capacity;
- Consult her family and friends to what the patient would have wanted in the circumstances;
- Obtain internal second opinion/s and appropriate independent review/s to assist the court to consider capacity and best interests. If capacity is in issue a psychiatric evaluation should be undertaken.Do not assume that mental illness precludes capacity; and
- Taking in account not only medical but also wider best interests, a formal best interests meeting should be held.All treating specialties should be represented.All treatment alternatives should be examined and the reasons for the preferred treatment plan should be set out in detail.Contingencies should be considered - for example is the woman likely to require sedation to enable treatment to occur.Bear in mind that the law requires the least restrictive option of treatment.Clear thinking in this respect enables the health provider to be certain about exactly what is being sought before the Tribunal or Court.
Note that different forums offer different relief. A State Civil and Administrative Tribunal has the power to consent to treatment on the woman’s behalf whereas the Supreme Court can declare that the course of treatment (or indeed withholding of treatment) is lawful. These forums are not mutually exclusive and relief can be sought in either, or both, as per the case of Miss DXI.
 NCAT, Guardianship Division: DXI  NSWCATGD 4  For instance Jehovah’s Witnesses can refuse blood products even if this results in the death of the foetus and themselves: http://www.smh.com.au/nsw/pregnant-jehovahs-witness-decision-to-refuse-treatment-harrowing-for-hospital-staff-after-mother-and-baby-die-20150406-1mf570.html . A foetus has no legal rights, however a woman’s interest in having a healthy child may feed into the best interests consideration made on her behalf if she lacking capacity.  S33 (1) of the Guardianship Act 1987 (NSW)  DXI  NSWCATGD 4  Application of a Local Health District: Re a Patient Fay  NSWSC 624   EWCOP 1417