Perinatal Palliative Care and Support

A/Prof Dr. Nicholas Tonti-Filippini PhD and Dr Mary Walsh MBBS FRACGP

[Abstract: This paper is written jointly by an ethicist and a family physician whose practice includes shared care of women having their babies at the Mercy Hospital for Women.

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

There is a significant dislocation between medical perceptions that testing 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.

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.

There is a need for GPs to be better informed and to provide early advice to women about what they are likely to expect, including the major medical objective (making termination available), the accuracy of the tests and the risks involved. Though routine antenatal tests are important for managing pregnancy and delivery, women should be informed that the prenatal screening and diagnostic tests are not mandatory and not needed as part of good routine care.

Obstetricians and maternity services also need to ensure that prior to any prenatal screening or diagnostic testing being done there is an opportunity to discuss the issues with a counsellor to enable informed decisions about the sequence of events that may be triggered by the tests.

The available evidence suggests that offering perinatal palliative care reduces the proportion of women who opt for termination. At all stages of the process, the option of perinatal palliative care should be made known so that women are aware of this choice from the outset, and are not left with the impression that the only medically supported option, in the event of abnormality, is termination of pregnancy or induction and foeticide. Perinatal palliative care is an alternative to the current circumstances in which women who terminate a pregnancy on medical grounds often report powerlessness.

The outcome of perinatal palliative care is much less certain than the alternative of termination of pregnancy, where the aim is to end the life of the child. However, for those women (and their partners) who have recognised the identity of their foetus as a child, and perhaps bonded, but also for those women who have not, offering perinatal palliative care creates hope and the opportunity to do the best to care for their child, however limited his or her existence may be, and knowledge that there are health professionals who will assist them to do so. The availability of perinatal palliative care demonstrates that their child is respected and valued by others. Perinatal palliative care is thus a vital service.]

Perinatal Palliative Care and Support

Dr Mary Walsh MBBS FRACGP

1. Perinatal Palliative Care

In Australia, a perinatal death is one that occurs between 20 weeks gestation and a month after birth[1]. 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.[2] It is not a huge number nationally but still significant.

In recent years the concept of “perinatal palliative care” has developed and there is now an extensive literature about it. Perinatal palliative care staff assist families who have a diagnosis of a life limiting condition for their foetus 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.[3]

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.[4]

The term “life limiting condition” has been adopted by the Murdoch Children’s Research Institute[5], 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 the palliative care should happen through out a person’s illness not just in the terminal phase.[6] 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 foetus 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 foeticide, 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 foetus 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.[7]

2. False Reassurance and the Need for Counselling Prior to Testing

Prenatal testing identifies abnormalities in approximately 5% of pregnancies that are tested and, despite testing, a further 2-3% of abnormalities are not identified until after birth.[8] 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 foetus/unborn child will choose to have the pregnancy terminated.

In one UK study, most of the terminations occurred within 72 hours of the woman receiving the news of the abnormality.[9]

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.[10] 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.[11]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.[12]

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 tests for conditions for which there is no treatment and for which the major medical justification is termination of pregnancy. Though this is the medical justification, 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.

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. Not only are their false negatives, the tests are only for a limited range of conditions and there remains a 2-3% chance of abnormality despite negative tests. Further, the invasive tests themselves have risks of morbidity and of miscarriage. The aim of eliminating some diseases by termination may justify a 1% risk of miscarriage in some medical minds, but for a women, miscarriage is usually devastating and even more so if she is aware that she may have caused it simply because she wanted reassurance[13]. The assessment of risk depends vary much on acceptance and the 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 my experience of providing shared care for women during pregnancy, I have noted on occasion that the receptionist 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. 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.

Women attending the Mercy Hospital for Women for tests are given pamphlets that indicate that:

the combination of maternal serum screening and the ultrasound tests are optional,
a low probability does not indicate that the child does not have Downs Syndrome;
the tests do not tell them whether the child will have Downs Syndrome or not,
they will be offered diagnostic tests, and
the diagnostic tests have a small risk of miscarriage.

The women are given a list of questions that asks whether they would consider termination. Given that the literature indicates that the women have the tests for reassurance rather than for the option of abortion, it would seem that the information about continued risks of abnormality, the false positive and false negative rates and the risks of the invasive tests may not be well understood.

3. Patients’ Experiences

A colleague who is a senior academic reported that he and his wife had no opportunity to ask questions about the risks of chorionic villus sampling until she was actually on the table about to have the procedure done. On being told that the risk of miscarriage was of the order of 1% she declined to have the test. They were deeply upset that it had been assumed that they would consider that risk to be insignificant and no-one had raised with them that the purpose of the test was to select for termination of pregnancy.

Not only are the tests regarded as normal and routine, but anecdotally many women report being treated badly if on receiving a diagnosis of abnormality they do not terminate. Women who choose not to follow the majority, report experiencing unsupportive attitudes from health professionals. They claim that they were made to feel at fault and that they did not receive the normal antenatal support that women with normal pregnancies are given and instead attitudes were expressed that implied that the child was not worth it.

Pauline Thielle, a nurse, has recently published her experiences[14] in the Journal of Medical Ethics. In that account she reports that following diagnosis of trisomy 18, information about her pregnancy needed for the care of the pregnancy was not recorded and the usual obstetric focus on protecting the well being of her child/foetus did not occur. She received the diagnosis by telephone while driving. She had to battle to be allowed to give birth to Liam in her local maternity hospital and her experiences between diagnosis and eventual stillbirth were difficult and without counselling support, until late in the pregnancy when she was eventually referred to a paediatrician who was sympathetic to her plight and willing to advocate on her behalf and on behalf of Liam, who was eventually stillborn.

One of my own patients has provided a similar account of her experiences from the time that ultrasonography identified a greater probability of trisomy 18, through to having the chorionic villus sampling to confirm the diagnosis and then managing the pregnancy until birth. Her baby, Peter, died soon after birth by Caesarean section.

Peter’s mother had a traumatic time beginning with the routine ultrasound in which the likelihood of the condition was identified. The shock was great as she had not been prepared for an adverse result and she had her daughter with her who was only four years old. The ultrasonographer handled the situation with little sensitivity.

From the outset, she felt that the care provided was different from the care that she would have been given if Peter had not been diagnosed with severe disability: there were many responses from health professionals that reflected negatively on her child and on her decision to continue with the pregnancy. The experiences were so traumatic that she changed hospitals seeking acceptance and supportive care for her baby, herself and her family. Even at the second hospital, there were many battles with health care providers to gain acknowledgement and respect for her decision. Their attitude seemed to be that she had “brought this on herself” by choosing to continue with the pregnancy. Her distress was further compounded by the involvement of a doctor, who is a well-known proponent of late term abortion, in her care.

Approaching the time of delivery, she and her husband wanted their child to have the best chance of being born alive and so they requested a Caesarean section to minimise the trauma for Peter. (She had had one previous Caesarean.) Her obstetrician initially was reluctant, another source of great distress. Another obstetrician was consulted, who fully supported her decision and raised his concerns with the treating obstetrician. The section was performed, and afterwards she was able to speak very highly of the care received at the time of the birth, with vital support from pastoral care, nursing staff, counsellors, a paediatrician, and her family.

It was a remarkable series of events with many lessons learned about what is needed to provide adequate support in what have come to be the unusual circumstances of a woman electing not to terminate following a diagnosis of a life limiting condition. One lesson learned is that the length of one’s life does not dictate the impact that it will have – Peter and Liam have touched the hearts of so many already, and have been catalysts for change in the provision of perinatal care.

Another of my patients had an infant who was diagnosed after birth with Spinal Muscular Atrophy. The baby lived for nine months gradually suffering greater effects of paralysis, until death from respiratory failure. It was a difficult time for both parents, there was not a great deal of support available to manage the illness and dying of the child, and the illness and death clearly influenced their approach to subsequent pregnancies for which they sought prenatal diagnosis and chose abortion for a later pregnancy. They were advised that the child of the later pregnancy might not be affected by the disease to the same extent and might not have the same prognosis, but they elected termination rather than have a child suffer as the first child had done. One wonders what the outcome would have been had the immediate offer of a perinatal palliative team approach been available.

4. Gaps in Service Delivery

There would appear to be significant gaps and inconsistencies in the services available to meet the needs of women and their families who experience diagnosis of a life-limiting condition for their foetus/inborn child. Sometime the circumstances are well managed, but on other occasions they seem to fall between the cracks.

The needs for counselling, advice and support can be separated into several distinct stages:

Prior to and at the time of non-invasive testing when women need to be prepared for what might eventuate and to be informed that pre-natal screening and testing is a pathway that may result in an adverse diagnosis and a proposal for termination which most women adopt, but that continuing the pregnancy and palliative care is an available option for which they will be supported;
Prior to and at the time of invasive testing, women need to know the risks of invasive, tests that harm may be done to the child including miscarriage of a healthy child as a result of the test and the fact that there are many conditions for which there are no prenatal tests, so even a positive result does not exclude abnormality, they again need to know that in the event of a positive result, continuing the pregnancy is an alternative for which there will be resource and support including perinatal palliative care, and they may benefit from meeting parents of children who have similar conditions and, or their associations;
Between testing and the termination or birth, there is a need to recognise that the woman may be bonding to her child and may express great love for her child, while grieving over the likely early death. She and her family are likely to need the same care and support needed from multidisciplinary palliative care teams as may be provided when any member of the family is dying. It is especially important that her relationship to the child is recognised and not belittled and that the child and his or her needs for care are treated as insignificant because of the life limiting condition. Some women prefer to minimise the trauma for the child including opting for Caesarean section, despite the grim outlook. It is important that they are not made to feel that that option is useless because of the prognosis;
At the time of birth, thought needs to have gone into the possibilities beforehand, including stillbirth and how an early death of the child may be managed and plans made perhaps for a funeral and rites to mark death and the grieving;
Afterwards if the child survives he or she may live for a time, even a long time, with disability, and thought needs to go into the possibility that the child may go home with the parents.

There also appear to be differences between the public and private sectors. In the public sector women are more likely to be referred to genetic counsellors or other health professionals who can provide a contact, advice, counselling and support for the duration of the pregnancy. In the private sector there appear to be gaps and women may not receive counselling to assist them with making decisions. At a recent meeting on this topic, a chaplain at a major private hospital reported women proceeding from diagnosis to termination without being offered counselling and support, and without being presented with options to be supported if they choose not to terminate.

In both sectors women may experience non-invasive testing without much advice about the possibility of a diagnosis of a major abnormality and the decisions that may need to be made subsequently. There appears to be little preparation for the shock that women may experience, the likelihood of being offered invasive testing, and the reality that most women who receive a diagnosis of a major abnormality choose to end the pregnancy.

There would appear to be insufficient funding of genetic counsellors and consequently lack of opportunities for women experiencing tests which may reveal a major abnormality to have access to counselling at each stage. The issue is not a matter of training. There are many more qualified genetic counsellors than there are places available. Qualified genetic counsellors are being employed in other roles for lack of funded positions for genetic counsellors.

There is also a lack of Australian research into the needs of women in these circumstances. The studies presented were very small scale and the samples not representative of either the health professionals involved nor of women experiencing a diagnosis of a life limiting condition in their foetus/unborn child. The Murdoch Institute is pursuing some grants for research into this area.

How the needs for support through the process of screening, diagnostic testing, considering options and managing pregnancy are met may significantly affect the choices made and the outcomes.

5. The Effects of Offering Perinatal Palliative Care

In a recent UK study[15] 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 liveborn and lived for between 1 hour and 3 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 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.

6. Decision-Making Counselling

Counselling before undertaking prenatal tests and at each stage of the way is obviously important, but it seems that for many women, especially those in the private sphere, it is either not available or at least not offered[16]. Decision-making counselling is important for the opportunity that it gives for women and their partners to take the time to explore in an informed way the issues and their own values before making such vital decisions.

The issue of decision-making counselling is so important that in September 2006, the Australian Catholic Bishops Conference issued interim ethical guidelines for pregnancy counselling that insist upon it.

The Bishops advised that pregnancy-counselling services ought not refer for abortion and that non-directive counselling during pregnancy has an important role[17]. They described pregnancy support as having two components:

a) Counselling to assist with decision-making; and

b) On-going advice, material, emotional and spiritual support during pregnancy

In their document providing interim ethical guidelines for pregnancy support services[18], the Bishops said that the aims of decision-making counselling are distinct from pre-procedure counselling. Pre-procedure counselling is for a person who has decided on a course of action and is being guided in what to expect during and after the procedure. They supported decision-making counselling on the basis that it is client-centred and non-directive and aims to assist a person to make a decision by:

a) Providing emotional support, time and space so that the client can make a decision that is reflective rather than panicked;

b) Assisting a client to talk through the problem(s) facing her by examining options and their implications for the client’s own values;

c) Assisting the client to clarify her own sense of self in relation to a new problem and to make reasonable decisions for herself about what she wants now and in the long term;

d) Assisting the client to make reasonable decisions in relation to others;

e) Informing and exploring with the client the availability of emotional and other support;

f) Indicating to the client the need to seek medical or other professional services in relation to her pregnancy and encouraging her to seek that assistance from her own doctor or from another doctor or professional.[19]

The Bishops maintained that decision-making counselling ought not to attempt to direct the patient in relation to her pregnancy or toward any particular decision. The client is most likely to make a good choice if the counsellor serves to reduce the sense of panic and urgency and instead assists the client to regain control of her own circumstances. The aim is to give her greater confidence in being able to cope with pregnancy and to assist her to make a reasonable decision for herself. This provides the best chance of a life-affirming choice.[20]

7. Conclusion

[1] http://meteor.aihw.gov.au/content/index.phtml/itemId/327314

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[3] David Munson, Martha Hudson, Stefanie Kasperski, “Perinatal Palliative Care Initiative”, Philadelphia Children’s Hospital, Accessed 20/12/2010 from http://www.chop.edu/service/fetal-diagnosis-and-treatment/about-our-services/perinatal-palliative-care.html

[4] Ibid.

[5] Alice Horwood and Sibel Saya in discussion at a meeting on Perinatal Palliative Care, John Paul II Institute for Marriage and Family, East Melbourne, December 7^th 2010

[6] NHMRC Ethical Guidelines for the Care of Persons in Post Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State http://www.nhmrc.gov.au/_files_nhmrc/file/publications/synopses/e81.pdf+NHMRC+unresponsive+state

[7] J.-J. Detraux, F.R. Gillot-de Vries, S. Vanden Eynde, A. Courtois, A. Desm Psychological Impact of the Announcement of a Fetal Abnormality on Pregnant Women and on Professionals Annals of the New York Academy of Sciences 5 Feb 2006

[8] http://www.hopkinsmedicine.org/bin/q/l/patient-Info-Sheet.pdf

[9] Donnai P, Charles N, Harris R. Attitudes of patients after “genetic” termination of pregnancy. British Medical Journal 1981;282:621-622, p. 622.

[10] Elizabeth Ring-Cassidy and Ian Gentles “The Impact of Abortion After Prenatal Testing” Accessed 20 12 2010 from http://www.afterabortion.org/prenataltesting.html#6#6

[11] Jones OW, Penn NE, Shuchter S, Stafford CA, Richards T, Kernahan C, Gutierrez J, Cherkin P. Parental response to mid-trimester therapeutic abortion following amniocentesis. Prenatal Diagnosis 1984;4:249-256, p. 250.

[12] Green JM. Obstetricians’ views on prenatal diagnosis and termination of pregnancy: 1980 compared with 1993. British Journal of Obstetrics and Gynaecology 1995 March;102(3):228-232, p. 231; and Mander R. Loss and Bereavement in Childbearing. Oxford: Blackwell Scientific Publications, 1994, p. 44.

[13] The Royal Australian and New Zealand College of Obstetricians and Gynaecologists advises mothers that there is a 1 – 3% risk of miscarriage following CVS (i.e. between 1 and 3 babies in 100 will miscarry). The test may also involve complications such as infection, limb deformities and trauma to the child. (Royal Australia and New Zealand College of Obstetricians and Gynaecologists Amniocentesis and Chorionic Villus Sampling (CVS) January 2007, www.mitec.com.au). Amniocentesis carries a risk of miscarriage, again depending on the skill of the operator, of up to 1% (i.e. up to 1 baby in 100 will miscarry), as well as other risks to the child due to amniotic fluid leakage, e.g. abnormalities in posture, infection and respiratory distress. (Tabor, A., Philip, J., Madsen, M., Bang, J., Obel, E.B., Norgaard-Pedersen, B. “Randomised controlled trial of genetic amniocentesis in 4606 low-risk women”. The Lancet (1986) 352: 1287-93)

[14] Pauline Thiele “He was my son, not a dying baby” J Med Ethics 2010 36: 646-647

[15] A C G Breeze, C C Lees, A Kumar, H H Missfelder-Lobos, E M Murdoch

“Palliative care for prenatally diagnosed lethal fetal abnormality” Arch Dis Child Fetal Neonatal Ed 2007;92:F56–F58.

[16] This conclusion was reached at a seminar for health professionals held by the John Paul II Institute for Marriage and Family, December 7^th 2010 at the Thomas carr Centre in East Melbourne.

[17] Australian Catholic Bishops Conference “Bishops’ Commission for Doctrine and Morals Preliminary Advice on Pregnancy Support and Counselling” 10/9/2006 http://www.catholic.org.au/index.php?option=com_docman&Itemid=315

[18] Denis Fitzgerald “The features of counselling in a Catholic agency” Vol 21 No 3 2007

[19] Australian Catholic Bishops Conference “Bishops’ Commission for Doctrine and Morals Preliminary Advice on Pregnancy Support and Counselling” 10/9/2006 http://www.catholic.org.au/index.php?option=com_docman&Itemid=315

[20] Ibid.