Perinatal Palliative Care and Support

Professor Dr Nicholas Tonti-Filippini and Dr Mary Walsh

The concept of perinatal palliative care for women who experience a diagnosis of a pregnancy of a life limiting abnormality is well developed in the literature but seemingly not so in practice in Australia and New Zealand. 

Introduction

Perinatal care palliative care is a system of interdisciplinary “care to prevent and relieve infant suffering and improve the conditions of the infant’s living and dying. It is a team approach to relieving physical, psychological, social, emotional, and spiritual suffering of the dying infant and the family”^[i] when a diagnosis of a life limiting condition is made in the child during pregnancy.

There is a significant dislocation between medical perceptions that prenatal testing^[ii] is for the purpose of providing the option of termination and the perspective of those women who opt for the tests in the false belief that the test results provide reassurance. It seems that women who do receive a positive screening result may be shocked and unprepared for its significance and the sequel of being offered invasive diagnostic tests^[iii].

As a matter of some urgency women need to be offered supportive decision-making counselling before they embark on a course of prenatal testing that may lead to invasive tests, risk of miscarriage and the predicament of being offered termination of pregnancy.  

Perinatal palliative care

In Australia, a perinatal death is one that occurs between 20 weeks gestation and a month after birth^[iv]. In 2008, there was one perinatal death for every 100 births. 73% were dead at birth and 27% after being born alive. 2,921 women experienced perinatal loss.^[v] It is not a huge number nationally but still significant.

In recent years an extensive literature has developed about the concept of ‘perinatal palliative care’. Perinatal palliative care staff assist families who have a diagnosis of a life limiting condition for their fetus or unborn child to plan for and cope with the remainder of their pregnancy and the time around delivery. The goal is to support families as they face the unimaginable and to help them down a path of healing.^[vi]

This is done in a multidisciplinary way by:

• Helping prospective parents create a birth plan that is consistent with their hopes, goals and values
• Exploring the possible pathways that lay ahead
• Bolstering the family's coping strategies
• Exploring medical decisions
• Considering memory making options
• Providing a safe environment for families to talk about what they are experiencing.^[vii]

The term ‘life limiting condition’ has been adopted by the Murdoch Children’s Research Institute^[viii], instead of ‘lethal abnormality’ still used in some publications.  Prognosis is often uncertain in circumstances in which the diagnosis may refer to a range of conditions of variable severity and when there may also be intercurrent illnesses.  Death may be expected at or before birth, but the child may survive against that expectation. 

Unfortunately, there is a misconception in our community that palliative care is basically the management of death. The National Health and Medical Research Council describes palliative and supportive care as including a multi-disciplinary range of professional services that are focussed on supporting a person and his or her family physically, socially, emotionally and spiritually; and on relieving painful or uncomfortable symptoms, while maintaining function including, when possible, lucidity. Palliative care may be engaged when there is no hope of curing the underlying condition, but it may also be an adjunct to curative intervention.  The NHMRC insists that palliative care should happen throughout a person’s illness, not just in the terminal phase.^[ix]  This is true also of severe perinatal conditions: multidisciplinary support is needed throughout the process: in preparation for testing and from diagnosis until birth, and then from birth and throughout the life of the child until death.

The above list reflects important aspects of perinatal palliative care in which the parents are given the option of continuing with the pregnancy, and care being provided, as appropriate, for the fetus or unborn child to minimise any distress caused by the condition, while assisting the family to cope with the diagnosis and prognosis and then providing the care necessary when the child is born. As an option, perinatal palliative care is much less certain than the alternative of termination of pregnancy, or early induction and feticide, where the aim is to end the life of the child.  What it offers, however, is the opportunity for the woman and her partner to feel that they have done the best to care for their child. For women who have recognised the identity of the fetus as a child and have begun to bond with him or her, this may be important. Offering perinatal palliative care is also an alternative to the powerlessness that women who terminate a pregnancy on medical grounds often report.^[x]

False reassurance and the need for counselling prior to testing

Prenatal testing identifies abnormalities in approximately 5% of pregnancies that are tested. Despite testing, a further 2-3% of abnormalities are not identified until after birth.^[xi] Approximately 15,000 Australian women receive a diagnosis of congenital abnormality during pregnancy each year.  Anecdotally, approximately 90% of women who receive a diagnosis of a life limiting condition in their fetus/unborn child will choose to have the pregnancy terminated.

In one United Kingdom (UK) study, most of the terminations occurred within 72 hours of the woman receiving the news of the abnormality.^[xii]

Despite this connection between prenatal testing results and termination of pregnancy, for many expectant couples, the link between prenatal testing and abortion, at least initially, does not exist.^[xiii] Even when birth defects and abortions are explicitly discussed, the pregnant woman and her partner often simply do not link this outcome to prenatal diagnosis.^[xiv]  There often appears to be dissonance between the practitioner's understanding of the purpose of prenatal diagnosis and the pregnant woman's perception of the procedure. While the practitioner may view the diagnostic tests as a way of preventing the birth of a ‘defective’ child, pregnant women seek them out for reassurance that their babies are well and healthy.^[xv]

Antenatal testing is important in the management of pregnancy, identifying matters that are relevant for the management of delivery and, in some circumstances, allowing for in utero procedures to treat problems that might not be so well managed if left until birth, and in some cases preventing still birth. The major ethical issue concerns prenatal tests for conditions for which there is no treatment and for which the current major medical justification is termination of pregnancy. Though the possibility of termination is the medical justification for the test, it appears that women who have the tests do so to seek reassurance, rather than with termination in mind. There is, therefore, a gap between the medical justification and the understanding of the women. This is most obvious in the timing of the tests. Tests done during the first trimester, especially invasive tests which have greater risks when done early, are done at that time for the medical reason that termination is easier the earlier that it occurs.  There is no other medical reason for doing the tests so early.

The chances of a serious abnormality at birth are relatively low, approximately 3%, but they may be higher where there are risk factors or a family history of genetic disease. Often, the desire for reassurance is based on false beliefs; a negative result of a test does not mean that the baby will be born healthy, and may only indicate a marginal difference in the probability that the child has serious abnormality.  Not only are there false negatives, the tests are only for a limited range of conditions and there remains a 2-3% chance of abnormality despite negative tests.  Thus, an average 3% risk that prompted the tests may still remain only slightly changed by a negative test result. Further, the invasive tests themselves have risks of morbidity and of miscarriage. Thus, if fully informed, the testing is not likely to be reassuring and may even add to anxiety.  The aim of eliminating some diseases by termination may justify a 1% risk of miscarriage in some medical minds but, for a woman, miscarriage is usually devastating and even more so if she is aware that she may have caused it simply because she wanted reassurance.^[xvi] The assessment of risk depends very much on the acceptance and expectation of termination and the difference between the medical justification and the women’s desire for reassurance is relevant and reflects a lack of knowledge on the part of the women in seeking the tests for the purposes of reassurance rather than for the possibility of termination.  

Therefore, women who opt for the tests for reassurance and without expectation of termination in the event of abnormality are choosing the tests without adequate information and therefore without informed consent. The difference between their expectations and understanding and the medical perception is thus of grave concern.

In the experience of providing shared care for women during pregnancy, on many occasions the receptionist has booked the prenatal tests ahead of the appointment with the obstetrician. It seems that the tests are regarded as so normal and routine that they do not even warrant a discussion with the obstetrician of the risks and the possible outcomes. In those circumstances there is thus no opportunity for a discussion with the obstetrician about the purposes of the tests, what may be expected from them, and what the sequel may be in the event of an indication of abnormality. 

The effects of offering perinatal palliative care

In a recent United Kingdom study^[xvii] women and their partners were offered perinatal palliative care, following a diagnosis of lethal foetal abnormality, as an alternative to termination of pregnancy. The article shows that perinatal palliative care is a significant alternative, because 40% opted for perinatal palliative care compared to the usual 90% who opt for abortion. The study included 20 pregnancies and of the eight parents who chose to continue the pregnancy and pursue perinatal palliative care, six of these eight babies were live born and lived for between one hour and three weeks.

The numbers are too small and the sampling not reliable enough to make it possible to draw general conclusions. But it does seem significant that 40%, when offered an option of perinatal palliative care, chose not to terminate compared to the 10% who would normally be expected not to do so. There is a need for more research into whether offering perinatal palliative care would affect women’s choices and what the comparative outcomes would be for those women and their families who chose to continue to birth and those who chose to terminate.

This study would seem to indicate how important it is for women to be well informed and given genuine options to continue with their pregnancies. Prenatal palliative care would seem to be insufficiently developed in Australia and New Zealand. Much needs to be done to make genetic counselling routinely available prior to women entering into the screening and diagnosis pathway so that they have the time and space to make well informed decisions in accordance with their own beliefs.

If they have had tests that provide a diagnosis of a life-limiting condition in the child, then the evidence suggests that many would choose to continue the pregnancy rather than choose termination of pregnancy.  Without being offered that option around 90% are currently reported as choosing termination.  Many who do make that choice report feeling powerless in the face of the advice that termination is medically required. 

Thus there are two important services to be made available – genetic counselling and non-directive counselling prior to embarking on prenatal screening and testing and, second, the offer of perinatal palliative care and support in the event that testing does indicate a life limiting condition. These are choices that tend not to be offered to women and their partners in Australia and New Zealand. Recently, Catholic Health Australia acknowledged the problem and advertised a website for perinatal palliative care, but at time of writing it was not functioning. There was no suggestion included that women should be offered genetic counselling before embarking on screening and testing.

Professor Nicholas Tonti-Filippini BA (Hons) MA (Monash) PhD (Melb) FHERDSA KCSG is Associate Dean and Head of Bioethics at the John Paul II Institute for Marriage and Family, Melbourne.

Dr Mary Walsh MBBS FRACGP is a general practitioner who undertakes shared obstetric care with the Mercy Hospital for Women in Heidelberg, Victoria.