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.



Endnotes[i] Anita Catlin and Brian Carter, “Creation of a Neonatal End-of-Life Palliative care Protocol,” in Journal of Perinatology, 2002, 22: 184-195.
[ii] Note that the term “prenatal testing” tends in practice to be differentiated from “antenatal testing”.   Antenatal testing is used for tests related to the health of the mother or the child that are primarily focussed on improving the care provided during pregnancy and child birth.  Prenatal testing tends to be used for identifying life limiting conditions in the child which may have a bearing on decisions to terminate pregnancy.  There is sometimes some overlap between the uses.
[iii] An invasive test, such as amniocentesis, involves using needle aspiration under ultrasound diagnosis to remove some amniotic fluid from around the foetus and testing foetal cells it contains.   Done at about 16 weeks when it is usually recommended, it risks causing a miscarriage (approx. 1%) or otherwise permanently damaging the child.  Chorionic villus sampling (CVS) involves using needle aspiration to take a sample of the chorion, which is part of the placenta, and has a much higher risk of miscarriage (approx. 2-3%) and harm.   It is usually recommended to be done during the first trimester so that, if abortion is chosen, it is less physically and emotionally traumatic for the women.   Both procedures are safer if done later.  The risk of miscarriage does vary depending on the skill and experience of the operator.

[v] National Perinatal Statistics Unit “Australia's mothers and babies 2008” http://www.preru.unsw.edu.au/PRERUWeb.nsf/page/ps24

[vi]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
[vii] Ibid.
[viii] 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 7th 2010
[ix] NHMRC Ethical Guidelines for the Care of Persons in Post Coma Unresponsiveness (Vegetative State) or a Minimally Responsive Statehttp://www.nhmrc.gov.au/_files_nhmrc/file/publications/synopses/e81.pdf+NHMRC+unresponsive+state
[x] 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

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

[xiii] 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
[xiv] 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.
[xv] 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.
[xvi]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, 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)
[xvii] 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.

Editorial: Single mothers are saints

Catholic bioethicist Bernadette Tobin writes: “In order to understand the teachings of the Catholic Church in relation to questions about the beginning of life, we need to identify and appreciate the one idea that informs all of these teachings. This is the idea that the life of every human being is, in and of itself, valuable or sacred.”[1]

For Catholics, the unconditional respect due to human life begins when an ovum is fertilised. Embryos become children not by some addition to what they are, but simply by developing further as the kind of beings they already are. No matter how undeveloped or damaged the potentialities of a human being may be, that life is sacred. This view runs counter to that of many people for whom the embryo is nothing more than a ‘clump of cells’. ‘How can we possibly accord the same moral status to a group of cells as to a person?’ it is asked.

The claim that a four or eight-celled embryo is a human being clearly takes us beyond empirical observation. As Gerry Gleeson and Tobin explain: “The common understanding of person in our culture has been shaped by modern philosophy’s emphasis on self-consciousness as the mark of personhood. A much older understanding of person, however, located personhood in the dignity of a being’s rational nature, irrespective of whether that being is conscious at a particular phase in his or her life. On this traditional view there is nothing problematic about saying that an unborn child is a person, for they are truly our fellow human beings, sharing our rational human nature … the key to understanding what a human embryo is lies in the connection between a human embryo and an adult member of the human species.[2] Therefore, to judge something solely at the ‘material’ level (it is only a clump of cells) is to ignore an important truth.

It is this view that underpins the Catholic position regarding abortion. But, to merely articulate such a position is not enough.    

Some time ago I found myself on the fringes of a group of Catholics discussing the impending birth of a baby to a teenage girl. I detected just the faintest whiff of scandal in the air – nothing said, but plenty implied. I quipped: “Isn’t that great.” Faces turned, eyes probing. “Isn’t it great that she is keeping the baby? Most girls and their families would have organised an abortion.”

These days, any single mother who decides to keep her baby is a heroine … even a saint. Ironically, for those who identify as Catholic, greater courage may be required if they find themselves fighting not only a prevailing negative cultural attitude but, sadly, the critical judgements of the very community that should provide unquestioning, unconditional support. These judgements are no less damaging for being non-verbal. Consider the story of Katrina who, at 19, found herself unexpectedly pregnant:

To say this news was unexpected would be an understatement. I went into shock … Mark cried ... To us, this was a disaster. Everything we had planned, everything we were working towards was shattered ... We knew our parents would be severely disappointed and that mine might actually disown me. We were both from religious families and most of our friends were religious – WE were religious. We felt that all our friends were likely to judge or even not be our friends anymore. We didn’t know what to do. Keeping the baby would mean potential ostracism from our friends and Church community. Not having the baby would mean going through with a termination, but escaping all the shame and our lives trotting on as planned ...[3]

As Catholics we need to honestly ask: ‘How many young single Catholic women and their partners and/or families would feel like Katrina did about her faith community – whether parish or school?’ John Paul II writes in Evangelium Vitae: “As well as the mother, there are often other people too who decide upon the death of the child in the womb.” (n. 59) Many Catholics have probably never considered that our parishes and/or schools may well fall under that category.

The rhetoric that characterises Catholic teaching about abortion is unequivocal.  But Donum Vitae also teaches that every child is a gift of God no matter the manner in which its conception is achieved (Part II,B,5). It is not enough to be committed to only half the message! Critically, what we believe needs to be translated into attitudes and actions that are consistent with the divine origins of the gift of life. Every new life is to be rejoiced over and celebrated. As the Scriptures note, we will ultimately be known by the fruits of our actions (Mt 7:16) rather than the purity of our teaching. On that score, I suggest, we still have a way to go.

John Kleinsman is director of The Nathaniel Centre



[1]Tobin, B. (2002). The beginnings of life: ethics and bioethics in the Catholic tradition. Bioethics Outlook, 13(2).
[2]Tobin, B. & Gleeson, G. (2002). The embryo stem cell debate. Bioethics Outlook, 13(4).
[3] Haywood, K. (2013). Journeying through Unexpected Pregnancy. Life News,29(3). 

“You know baby, if it wasn’t for these women you wouldn’t be here”

 Cynthia Piper

In 2011, 15,863 abortions were performed in New Zealand, of which 97.6% were authorised on the grounds of a “danger to the mental health” of the woman.1There is no doubt that for many women an unintended pregnancy is a crisis situation causing severe anguish. The woman’s over-riding wish is for life to return to normal; a wish to be ‘unpregnant’. How a woman, her partner or spouse, family members, friends, employer, and school react to the news can influence the decision whether or not to continue with the pregnancy. Despite rhetoric that it is a woman’s choice, the people she turns to for help or advice may leave her feeling that she has no choice but to abort.

A woman in a crisis pregnancy experiences a conflicting mass of emotions; she is hormonal and very vulnerable. In this fragile state of mind she has to make what is likely to be one of the most important decisions of her life; one that will have life-long consequences. Rather than making a quick decision a woman needs time to consider all her options. She needs to be provided with balanced, full and factual information so she can make an authentic informed choice free from coercion, based on her individual circumstances and according to her conscience. All her options, keeping baby, adoption or abortion have long term consequences – there is no easy choice.

Lena (aged 18), reported that when she discovered she was pregnant she was so upset she even considered suicide. Her older sister had a baby outside of marriage at 18, and two years later her parents still had not met their grandchild. Fearing her parent’s reaction – ‘Dad will kill me, I’m his princess’ – recalling the experience of her older sister, losing her job, and believing she had sinned against God, Lena felt an abortion was the answer because then ‘no one will know.’2An abortion, it seemed, would solve all her problems. Fortunately, Lena contacted a lay counselling agency whose counsellors recognised that there were a number of issues that Lena needed to work through if she was going to make an informed decision free from coercion.

As with many pregnant women in this situation, Lena was surrounded by what Carolina Gnad calls a ‘web of influence’ that can drive a woman towards believing an abortion is her only choice.3In Lena’s case, that web included her cultural and religious background, a lack of support from her boyfriend, the potentially negative reaction of her parents, a belief that she had shamed her family (they were respected elders in their church community), the loss of her dreams and plans for the future and limited knowledge about abortion and the available support. These factors were compounded by attitudes towards abortion gained from the media, work colleagues, and friends. Knowing that an abortion can be lawfully obtained, and that therefore it must be ‘okay’, can over-ride a woman’s sense or belief that abortion is morally wrong.

Sometimes it is pride and/or sense of shame that encourages a mum or dad to suggest their daughter terminate a pregnancy, even when this runs counter to their own or their daughter’s beliefs. Comments such as ‘My mum said she was too young to be a grandmother’; ‘don’t expect us to look after your baby’; ‘you’ll never get a decent job now’; ‘look what you have done to your life’, are some of the parental reactions counsellors hear. It takes great courage to continue with a pregnancy in opposition to parental wishes and criticism. As parents, we need to learn to put our own pride and dreams or plans for our daughters on hold and take a lesson from the courage and resilience of our children. Conversely, there are a great many parents who are supportive of their children and welcome the new grandchild into the family. Sarah was initially very embarrassed and believed that she had lost face within her church community when her 16 year old daughter became pregnant. A simple ‘congratulations grandma’ from a colleague was all it took to restore her confidence. Parents and partners who accompany single, pregnant women also need support and encouragement.

When counsellors met with Lena it soon became evident that, despite what she said, abortion was not really an option as it went against her beliefs and values. It is widely known that “[w]omen are more likely to suffer emotional problems after an abortion” if they have gone against their own moral and religious values or maternal instincts, were pressured by others, had little support from their families or partners, or felt unsure about having an abortion.4Yet, in the state of mind she presented with, had Lena sought counselling at an abortion clinic, she would have been assessed as being eligible for an abortion and the outcome would, in all likelihood, have been very different. What prevented that from happening was the awareness she gained from those who accompanied her on her journey that there were many external, personal, religious, social and economic influences that were pushing her towards abortion and preventing her from making a fully informed choice.

After a week of counselling, Lena came up with a solution; maybe she could find somewhere to stay until she had the courage to tell her parents about the pregnancy. Such places are few in New Zealand, but at that time there was an opening at Bethany House. For Lena, that allowed her to tell her parents about the pregnancy from the ‘safety’ of distance. Within three months Lena had told her dad about the pregnancy and moved back home before giving birth. She was surprised to discover that her parents did not reject her, and they were surprised at the way their ‘little princess’ had managed on her own.

What was important in Lena’s situation was that at no time was she hurried into making one of the most important decisions in her life. Psychologist, J. William Worden has identified that “most women seeking abortions tend to do so in haste and, because of the stigma and shame associated with abortion, they may make the decision without the emotional support of family and friends.”5In New Zealand, the speed with which women are expected to come to a free, rational decision creates added pressure. At a 2008 workshop for staff at a Family Planning Clinic, medical professionals expressed concern and frustration at the time it took some women to make up their minds. They argued that the earlier a woman can come to a decision, the better.6This mindset places added pressure on a woman and may undermine her freedom. It should also be remembered that when a crisis involves moral, ethical, religious challenges, people tend to be less trusting of their own opinions and ability to make the right decision. They can become more reliant on the opinions of others, especially those closest to them, those in authority or those with specialist knowledge. The decision to abort is never independent of the woman’s circumstances and the influence of the people around her, especially her partner.7

Fear of relationship failure is one of the powerful drivers towards an abortion. The partner who says, ‘it’s your choice’, but then adds, ‘if you don’t get rid of it I’m off’, is not giving the woman a choice at all. Sadly, this scenario is all too common among those seeking pre or post-abortion counselling. Those working in pre and post-abortion counselling identify that partner relationship is the most common reason for women undergoing termination. In a Swedish study, women stated that their decision might have been different had they had support from their partner.8Australian research from 1995 showed that relationship problems contributed towards 45% of decisions regarding abortion.9

Some of the most vulnerable young women in a crisis pregnancy situation are those still at school. When there is no, or limited, support from parents, these young people need the help and support from school counsellors, teachers, or mentors whom they trust. The situation is not helped when teachers (including those at Catholic schools) tell students that they agree with abortion. Ruth (aged 15) had an abortion after her teacher told her “all the stink things about having a baby.”10Similarly, the comment made to a colleague that having a pregnant girl at a Catholic school is ‘not a good look’ demonstrates a lack of understanding of the concepts of compassion and the principles of Catholic Social Teaching. Young pregnant women must be allowed to continue their education in order to provide the best outcome for themselves and their children.

Both the pro-choice and pro-life lobbies use woman-centered strategies to influence the outcome of unintended pregnancies. When they are involved in the counselling processes there is a danger that their agenda ‘to the cause’ becomes most important rather than the best interests of the client. A pro-life woman-centred strategy focusses on an understanding that “women neither want nor benefit from abortion; that most women do not really ‘choose’ abortion but are pressured into it by others.”11While this may be true, those working with women considering an abortion need to stay focused on thoroughly exploring her legitimate needs as defined by her real-life context.

The process of promoting free and informed consent should minimise coercion and increase awareness of the physical and psychological risks associated with abortion. The consequences of continuing with the pregnancy, adoption and abortion also need to be discussed. Promoting and providing practical assistance to pregnant women helps ensure that women such as Lena are provided with real alternatives to abortion. Women need someone to help them sort through the myriad complex issues they face. If, in the end, a woman decides to have an abortion, compassion and an avenue for healing and support are vitally important.

In 1994, Pope John Paul II wrote: “It is precisely the woman, in fact, who pays the highest price, not only for her motherhood, but even more for its destruction, for the suppression of the life of the child who has been conceived. The only honest stance… is that of radical solidarity with the woman.”12

When Lena’s baby was three months old one of the counsellors visited her to see if there was anything she needed and to find out how she was coping. Lena’s words to her baby summed it up: “You know baby, if it wasn’t for these women you wouldn’t be here.”

Cynthia Piper has worked as a volunteer for over twelve years with pregnant teens and with Project Rachel, the Catholic Church’s after-abortion healing and support service. She is a lecturer with The Catholic Institute.

Endnotes

1 97.6% = 15,478. Abortion Supervisory Committee, Report of the Abortion Supervisory Committee, Wellington: Ministry of Justice, 2102.

2 Case notes. Names have been changed to protect the identity of the informant.

3 C. Gnad, Broadening Perspectives Around Termination of Pregnancy, Christchurch: P.A.T.H.S. 2012.

4 Ministry of Health, Considering an Abortion? What are Your Options?, Ministry of Health, Wellington: 1998, p.12

5 J. William Worden, Grief Counselling and Grief Therapy: A Handbook for the Mental Health Practitioner, Third edition, New York: Routledge, 2003, p.136.

6 Much of this emphasis on speed is because in New Zealand a pregnancy under 12 weeks can take place in a licensed clinic, whereas those over 12 weeks are performed by a specialist operating in a licensed hospital. http://www.abortion.gen.nz/legal/index.html. Accessed 6 November 2013.7 Selena Ewing, “An evidence base for counselling, social policy and alternatives to abortion”, Common Ground: Seeking an Australian Consensus on Abortion and Sex Education, John Fleming and Nicholas Tonti-Filippini, eds., Strathfield: St Pauls, 2007, p. 223.

8 Ewing, 2007, p. 218.

9 Ewing, 2007, p. 225.

10 Case notes, September, 2010

11 Brigid McKenna, “Reframing the anti-abortion message: pro-life and/ or pro-woman?”, Common Ground: Seeking an Australian Consensus on Abortion and Sex Education, John Fleming & Nicholas Tonti-Filippini, eds., Strathfield: St Pauls, 2007, pp.182-83.

12 John Paul II, Crossing the Threshold of Hope, London:Jonathan Cape, p.207.

Maintaining a principled ethical approach in the face of a global fertility market

 A submission to the Advisory Committee on Assisted Reproductive Technology

Earlier this year the Advisory Committee on Assisted Reproductive Technology (ACART) released a discussion paper on the “Import and Export of Gametes and Embryos” in response to more New Zealanders looking overseas for fertility treatment. New Zealand requirements are often different from, and in many cases more ‘restrictive’ than, other countries. In the face of differing standards, there is increasing pressure from some to loosen New Zealand restrictions. 

Introduction

Robust ethical review requires critiquing the underlying and often unexamined assumptions and convictions that shape individual and societal thinking about a particular issue. We are particularly concerned that in a society such as ours, questions relating to the common good are too easily subsumed by a distorted focus on individual autonomy. When this occurs, we can too easily fail to take full account of the fact that medical technologies, such as human assisted reproductive technologies “create their own culture of practices, institutions and discourses, and these become a powerful force that inscribes individual bodies to its own specifications.”[1]

While we have commented on this issue on a previous occasion, it strikes us that the realities of the global fertility market have introduced a new dynamic into the debate.

A shift in ethical frameworks
A particular feature of contemporary ethical discussions on the use of assisted human reproductive technologies is the way in which the language and thinking of ‘supply and demand’ (the market) is increasingly coming to the fore. This language indicates a shift, in at least some quarters, towards viewing the creation of human life more and more as part of a framework of thinking that is typically characteristic of economic transactions. At the same time the use of such language confirms and further perpetuates such a shift in other people’s minds.  

We accept that, to some degree, the use of ‘market’ language is understandable (and even unavoidable) in the context of exploring genuine questions relating to the regulation of reproductive technologies in a commercial environment. Nevertheless, we find the uncritical use of such language of great concern. Importantly, it betrays a tendency to think more and more about new human life as a ‘commodity’ that is subject above all to the desires, demands and expectations of those paying for the service – the consumers, prospective parents.

This has considerable implications for ethical reflection because the frameworks of thinking we adopt shape the way we look at and think about an issue. In particular, the influence of a market-based paradigm reinforces a particular and impoverished understanding of human freedom. In the words of the philosopher Michael Sandel, human freedom is reduced to mean “the freedom of the consumer.”[2] Consequently, parenting is at risk of becoming reduced to little more than another extension of the consumer mentality that permeates our society.

At the same time, as human procreation becomes increasingly subject to commodification, there arises an increased sense of ‘entitlement’ to a child. From this flows a lower tolerance for regulatory interference of any kind, especially from the State. Thus, when the question of access to assisted human reproductive technologies arises there are many who ask: “What possible business is it of any ethics committee? Why should they have to apply to a bunch of interfering medicos for permission?”[3]

The increased sense of entitlement is typically verbalised as a ‘right’ to access whatever ‘means’ are available for bringing about a child. In addition, and perhaps more worryingly, it is also increasingly framed as the right to exert a kind of consumer freedom over our children. What we mean by this is that the so-called right to a child leads people to believe they have a right to a certain type of child and therefore the right to exert ever greater degrees of control over the ‘products’ of conception.

There exists an urgent need to draw on other frameworks in order to challenge the shift in ethical discourse that is happening in our society. At the same time we need to remain clear about, and committed to, the principles that have given shape to the current New Zealand regulatory framework governing the use of assisted human reproductive technologies. To the extent that we allow a market mentality to shape our thinking it is to be expected that the principles underpinning the HART Act will start to make less sense to some people.  

The threats to a principled approach to decision making
In the wake of an increased sense of entitlement, the need to protect the very narrow meaning of ‘consumer freedom’ that Sandel (and others) speak of emerges for many as the primary ethical issue. This shift in ethical focus has been further exacerbated, we believe, by the increased opportunities that now exist for prospective parents to access assisted human reproductive technologies overseas. Compared with other jurisdictions which lack the robustness of New Zealand’s regulatory system, many people are judging the HART regulatory framework to be unnecessarily and unfairly restrictive. At the same time, others who might be less inclined to see it as ‘restrictive’ are perhaps increasingly inclined to see it as espousing a once workable, but now unworkable, ideal.

Therefore, even while many of the ethical dilemmas surrounding the import and export of embryos and gametes remain largely the same as in the past, it is our view that the realities of the global fertility market pose a new and heightened challenge to responsible human procreation. Indeed, we would go so far as to suggest that what is at stake in the present debate about greater (overseas) access to human assisted reproductive technologies is ultimately nothing less than the continued viability of the current principled approach to decision making that defines the HART Act.

We understand that, already, increased numbers of New Zealanders want to travel overseas to source eggs and embryos, a situation exacerbated by the shortage of donated eggs in New Zealand. While the motivation for this may well be largely pragmatic, rather than because of a desire to circumvent the law in New Zealand, the reality is that the eggs or embryos will be, in many if not most cases, commercially sourced. Because this is in breach of what is allowed in New Zealand, we anticipate this will eventually result in increased pressure to allow commercially sourced gametes and embryos to be directly sourced from within our own country.

We have, in the past, indicated that we are sympathetic to the idea of allowing couples who have previously conceived embryos overseas to bring them into the country for the purposes of having another child that is genetically related. While our position on this remains the same, we recognise that this also has the potential to lead to increased pressure to loosen the restrictions on what is allowable in New Zealand, particularly if some of the imported embryos have been created under standards and principles that fall short of our own.

Furthermore, while there are no legal barriers to couples travelling to countries that allow for embryos to be created in ways that, for good reason, are unacceptable in New Zealand, those without the financial resources will have a case that the ethical standards in New Zealand exist only for those who lack the resources to go overseas.

On all these counts an argument can be made that the status quo, even if unwittingly, fosters a significant degree of ethical inconsistency and unfairness. Why, it will be asked, should other couples not be allowed to have the children they want when precedents exist and all that is required is a simple law change? There is, in other words, a certain inexorable logic that points towards the further liberalisation of HART law in New Zealand, including the current constraints on using imported material that does not meet current New Zealand standards.

This is why we believe that more and more people will, in the future, come to question the viability of the current New Zealand framework including the principles that underpin it.

Managing ethical inconsistency and unfairness
Those, like us, who are hesitant about further ‘opening up the market’ for embryos and gametes because of their commitment to the ethical principles upon which the current New Zealand laws are based, find themselves needing to justify a regulatory approach which allows for ever increasing degrees of ‘inconsistency’ and ‘unfairness’. We readily admit that maintenance of the status quo will involve living with a degree of ‘inconsistency’ and ‘unfairness’ for individuals/couples. How might this be justified?

The arguments in favour of greater liberalisation, as described above, ignore a vital tension. We would describe the source of this tension as originating in the ethical space that exists between the desires and rights of individuals and the welfare or ‘common good’ of the society in which we live. As noted above, one of the (often unnoticed) fundamental issues at stake is the robustness of the (economic) paradigm that is increasingly being used by many to make sense of the world in which we live. More specifically we would argue that the language and thinking associated with ‘transactions’ and ‘entitlement’ is at odds with, and has the potential to undermine, the traditional way in which peoples across many cultures and ages have thought of new human life – what we, as well as many secular philosophers and anthropologists, would describe as an approach centred on ‘gift’ and ‘givenness’.[4] Of great concern for us is the fact that the shift to view human procreation more and more in terms of the market represents a significant departure from the way in which society has long thought about parenting and the role of children.

The very fact that granting individuals increasingly unfettered reproductive freedom will impact on societal understandings surely demands that any changes to the current regulatory system be subject to a ‘societal impact risk assessment’. This is what we find lacking in many of the arguments being put forward in favour of leaving assisted reproductive choices more and more in the hands of individuals or couples. Not unsurprisingly, the shift to consider questions about the transmission of human life within a more ‘market-based’ paradigm makes ethical questions about the societal impact (or common good) seem more and more irrelevant.

Concluding comments
For us, the key ethical issue is not about protecting an increasingly impoverished notion of freedom centred on choice. It is more about protecting a notion of human flourishing that takes into account the effects of the accumulation of individual choices on the society in which we live, including the likely impact on the welfare of the children who are conceived and the institution of parenting. We must be wary of making changes to the current regulatory framework that are premised largely on the value and importance of individual choice. This is especially important when it can be established that such changes are being influenced by the incremental progression of a market-based paradigm into the domain of parenting and families.

We should, of course, limit individual choice only for good reason. One of the challenges we face as a society is that these reasons do not always come to the fore in contemporary debates, not because they are not important but because the particular framework we employ renders them invisible. Such reasons become apparent when we recognise the inadequacy of giving exaggerated emphasis to individual choice and embrace other frameworks of thinking.

Our position is well described by Michael Sandel when he notes:

When science moves faster than moral understanding as it does today, men and women struggle to articulate their unease. In liberal societies, they reach first for the language of autonomy, fairness, and individual rights. But this part of our moral vocabulary does not equip us to address the hardest questions posed by cloning, designer children, and genetic engineering. That is why the genomic revolution has induced a kind of moral vertigo.[5]

And as the New Zealand Bishops have previously stated in an early Submission on the HART Act:

An over emphasis on the sufficiency of individual informed consent, as has been exemplified by a number of commentators with respect to recent debates in the bioethical area, reflects a failure to acknowledge the wider impact of technological interventions.

Finally, we appeal to ACART, in its reflections on this issue, to continue to take full account of the fact that the questions raised by human assisted reproduction are complex and have the potential for transforming the most basic of human relationships. The context which has given rise to the current debate places in jeopardy key principles at the heart of the HART Act. In particular we see that two principles are at risk; (i) the rights of children who are born to access knowledge of their origins and have a relationship with gamete donors, and (ii) a longstanding commitment to the principle that transactions involving body parts not be commercialised.

The current debate calls for a strong stand in favour of upholding the principles that underpin the HART Act. These principles have been debated at length and represent long-held cultural, social, ethical and religious values that promote human flourishing. They are also consistent with general public policy in New Zealand.

This will, in turn, mean saying ‘no’ to certain demands being made by couples or individuals, demands that may well increase as New Zealanders take advantage of the opportunities for having children, not always ethical by our standards, that exist overseas. However, we argue that the current principled approach, along with its growing perception of inconsistencies, can be seen as justified by an ongoing commitment to the common good and, above all, to the dignity and well-being of children. In which case, we will need to accept that it will become increasingly difficult to align New Zealand ethical standards with those of other countries.

In the face of globally varying ethical standards and competing principles, we would argue that the cause of ethical consistency and the well-being of children, parents and society, is best served by New Zealand working with other countries to uphold and promote the key principles that define our current regulatory framework around the use of reproductive technologies. To quote from the Consultation document: “New Zealand should not support or be seen to support, policies and practices in other countries that would be regarded as unethical in this country.”

Staff of The Nathaniel Centre


[1] Lindemann Nelson, Hilde. (1995). Dethroning Choice: Analogy, Personhood, and the New Reproductive Technologies. Journal of Law, Medicine & Ethics, 23, 2: 129-35.

[2] Sandel, M. "The Reith Lectures 2009: Genetics and Morality." A Common Morality for the Global Age: In Gratitude for What We Are Given (2009). http://www.bbc.co.uk/programmes/b00kt7rg [accessed November 3, 2009].

[3] Michael Laws commenting on a request by a gay couple to be surrogate parents.

[4] While the notion of life as a gift is a traditional Christian term, it is also arguably the basis for a common ethic without religious warrants. See, for example, the work of Havard philosopher Michael Sandel (The Case against Perfection: Ethics in the Age of Genetic Engineering. London: The Belknap Press of Havard University Press, 2007) and French-Canadian anthropologists Godbout and Caillé (The World of the Gift. Translated by D. Winkler. Montreal & Kingston: McGill-Queen's University Press, 1998).

[5] Sandel, M.J. (2007). The case against perfection. pp. 9-10. 

What to expect when no one's expecting: America's coming demographic disaster

By Jonathan Last. New York: Encounter Books, 2013.

Reviewed by Petrus Simons PhD

Introduction

The world’s population has increased from 3 billion in 1960 to 7 billion by the end of 2011, with 9 or 10 billion expected by 2050. Given that about 1 billion suffer hunger or malnutrition, many believe that the world is over-populated. In contrast, Jonathan Last argues that we should rather worry about a declining birth rate, which in due course will result in a decreasing world population. The populations of Russia, Italy, Japan and Latvia are already declining.

The statistic used is the total fertility rate, defined as the number of live births that women will have during their life, assuming they experience the age-specific fertility rates of a given period. At a rate of 2.1 a population will replace itself. At a lower rate, it will contract. In 1979 the world’s fertility rate was 6.0. It is now 2.52, close to replacement. New Zealand’s rate is around 2.0.

This review will summarise Last’s arguments and then discuss their strengths and weaknesses.

Reasons for falling fertility

Last is concerned with trends and cautions against possible biases such as racism or criticising women for not producing more babies. His reasons for the declining trend can be summed up as follows.

Religion and Secularisation: The waning of the Christian religion, which has always emphasised the blessing of children, has led not only to falling birth rates, but also to easier divorce, higher rates of divorce, declining numbers of marriages, greater acceptance of homo-sexuality and an increase in abortions.

Secularisation is associated with a belief that individuals are autonomous and should decide for themselves how they live. As a result the value of ‘community’ has been declining.

Medical: Better health care has led to a decline in infant mortality and, consequently, has eliminated the need to replace those dying in infancy. Progress in medical technology has also brought new methods of birth control. Sadly, it has also facilitated abortions. Since the US Supreme Court legalised abortion in 1973 (Roe vs Wade), there have been 49.5 million abortions. Currently, in Russia 13 abortions are performed for every 10 live-births. Last notes that “this might be the most grisly statistic the world has ever seen. It suggests a society that no longer has the will to live.” (p.137)

Modern culture: Women, particularly those who are more highly educated and are pursuing a career or trying to earn extra income, have less time to nurture families. Unemployment, lower incomes for many, rising costs of transport and housing, urbanisation and smaller houses, and high costs of child care (including baby car seats, prams etc) are all conspiring to reduce the birth rate. In addition, the availability of social welfare schemes, especially superannuation, has lessened the need to have children who can look after elderly parents.   

A historic shift: Historically, elites have had higher numbers of children than the poor. In Europe this began to change with the advent of the Industrial Revolution at the end of the 18th century. Since then the rich have been reducing the number of their offspring more severely than the poor. This reversal has been repeated just about everywhere. The lower classes follow by having fewer babies as well, so that they too can climb the social ladder. In other words, “reproduction has become an impediment to material success.” (p.74) In the United States, more college graduates with higher mobility means that people are congregating together with those who share their interests and values. As a result, “changes in fertility have altered the fundamental dynamics of American politics.” (p. 130)

Problems

The shift from growing to eventually declining populations entails a variety of problems.

Youth bulges:In some countries births have fallen so suddenly that there exists a bulge of young people. Had the decline happened more gradually, there would have been a number of generations with above-replacement, albeit decreasing, levels of births. Iran is a recent example. It has a ‘surplus’ of young men, who compete for jobs and who might easily be recruited for revolutionary campaigns.

One child policy: In China, the one-child policy that was initiated in the 1980s could lead to shortages of labour as well as pension problems after 2050. Since the policy has encouraged abortions, especially of girls, there is a growing oversupply of young men.

Japan:Japan is probably the country with the most drastic fall in live births since it became the first country to legalise abortion under its “Eugenic Protection Law” after the Second World War. It has also witnessed a decline in marriage and a consequent fall in births. Marriages also end much more frequently in divorce. By 2100, if the present fertility rate continues, the population could fall from 127 million to 91 million.

Redundant infrastructure and economic costs:In Germany, empty houses and shops are making way for parks. Obstetric clinics are turned into nursing homes. In North Rhine-Westphalia the government has retrained prostitutes to become elder-care nurses. In Japan, a depopulated village was turned into a landfill.    

In general, Last identifies the following effects:

  1. A sharp rise in the costs of health care.
  2. Smaller groups of younger people to bear the costs of old age (pensions and health).
  3. A slower pace of human progress due to a declining level of entrepreneurship and inventiveness. (Older people are more risk averse and lack the vigour to invent new things.)
  4. Older societies are less prepared to engage in war or to accept casualties.

Second demographic transition

Not everybody is convinced that falling fertility is a problem.  Demographers Ron Lesthaeghe and Dirk J. van de Kaa believe that low fertility is the result of modernity itself, another stage in our evolution and, therefore, a good thing. They refer to current developments as the second demographic transition, as the first one occurred at the end of the 18th century when the rate of mortality began to decline. Such a transition is complete when the fertility rate reaches the replacement rate. The US and Europe reached this point around 1960. The rest of the world is still in the process of this transition. With fewer children being born, they become very precious, with parents spending more time and effort on them.

What can be done?

Last does not subscribe to the theory that we should not worry about falling fertility. He believes that the trend can be reversed, although not by policies of providing financial incentives and propaganda, which seldom work. So, what does he suggest?

Last’s recommendations are based on three empirically based premises:

  1. Countries do not return to replacement level once their total fertility rate has fallen below 1.5.
  2. Any efforts to stoke fertility must be sustained over several generational cohorts i.e. a decades-long commitment to family growth.
  3. People cannot be bribed into having babies.

Last favours policies that help people have the children they do want. He advocates that the US should reduce the social security tax for those who become parents. He also argues that the costs of sending children to university are far too high and that reform in this area is desirable. Telecommuting might enable families to live near existing social and family networks.

Finally he quotes from Pope Benedict XVI: “Children, our future, are perceived as a threat to the present, as if they were taking something away from our lives. Children are seen as a liability rather than as a source of hope.” (p.175) Importantly, he concludes, Government should welcome believers rather than being hostile to them.

Analysis and Conclusion:

Last provides an admirable review of a world-wide trend of falling fertility, with a comprehensive account of its causes and possible consequences. I believe he is right in emphasising that societies with shrinking populations are less dynamic, and, therefore, face a shrinking tax base, insufficient to meet the demands of both the elderly and the young. Some of these effects are already apparent in countries that have been experiencing declining populations.

It is sobering to note the decline of the Judeo-Christian religion in our modern world as a key factor. In this respect, his account of a reversal of the falling trend in Georgia, in response to a call by the Orthodox Patriarch, is encouraging.  

Last does not address the problem of an increasing number of men suffering from a low sperm count. Although it is possible to overcome this to an extent by IVF, it contributes nevertheless to falling fertility.  

His view that the trend towards falling populations will have dire consequences for the welfare state is much exaggerated. Higher expenditures on the elderly due to an ageing population will be offset by lower expenditures on the young. Since the trend is long-term, policies can easily be adjusted.

Last does not discuss whether the world is able to care adequately for a population of, say, around 9/10 billion, assuming that it would stabilise at this level. Would there be sufficient clean water, proper food and clear air for all?

I would argue that the current ideology of exponential economic growth based upon science and technology stands in the way. Our technical-economic system destroys and pollutes fertile land, warms the climate, produces food that is less and less nutritious, creates stressful jobs and makes many people unemployed. The baby-robots made in Japan to get women interested in real babies symbolise our technologised civilisation. Is our culture committing suicide?  

Yet, change is possible as shown by Georgia’s Patriarch Ilia II’s actions to reverse a fertility collapse. His “mass baptisms are now a staple of Georgian life.” (159) It is a country in which the Christian religion still holds an important place.    

Last has issued a warning that the trend of falling fertility is not a healthy one. His warning is addressed especially to the United States. This may explain why his style is rather colloquial. Had he generalised his story he could have dealt an even greater blow to the myth of the world becoming over-populated.   

Dr Petrus Simons is a retired economist with a PhD in philosophy. He is a contributor to the South African journal "Koers".

 

 

 

Responding to loss in pregnancy

 

Meredith Secomb

Introduction

Every one grieves the death of an infant. Parents who have tragically lost their baby to cot death or illness find that others grieve with them. Immediate family and extended family, friends and acquaintances all recognise the heartbreaking nature of what has occurred. There are funeral rites which aid the grieving process; there are photographs to reflect upon. Even the sad, sad task of packing up baby clothes is a means of coming to terms with the reality of the distressing loss. In contrast, the experience of those who suffer loss during pregnancy can be very different. In this paper I want to reflect on the grief occasioned by the loss of a baby to miscarriage, stillbirth or abortion and suggest ways in which we might respond with heightened awareness and compassion to them.

Some general comments on grief and loss

After the publication in 1970 of the ground-breaking work of Elisabeth Kübler-Ross, On Death and Dying, her five stages of grief entered into the lay-psyche.[1] We read that grieving people regularly go through a stage of denial. The painful truth is often too much to handle in the immediate after-math of learning of a present or potential loss. This can be a constructive coping strategy in the short-term and it requires that the support person respects the need to process the news at a rate that is manageable. Similarly, we need to appreciate that people often become angry at their circumstance, displacing it onto immediate others, the medical establishment or God. Anger is another means of dealing with pain, distancing the sufferer from the interior grief that is too much to handle. Bargaining and a period of depression may follow but, if support has been adequate and patients have been allowed to process their feelings and thoughts in the context of compassionate others, eventually there may occur the healing process of acceptance. Ultimately, our understanding of Kübler-Ross’ work was more nuanced and we came to realise that these stages were not linear, for people may well revisit a stage that they had previously encountered.

These observations have certainly been helpful insofar as they have enabled us to respect the range of emotions which grieving people may experience. More recently, however, the process of grief that Kübler-Ross articulated has been questioned. George Bonanno’s evidence-based research challenges the notion that there are differentiated stages of grief. Instead Bonanno identified three common patterns of grief reaction: people who manifested resilience, people who demonstrated a recovery pattern, and people who suffered chronic grief. [2] Those in the resilient category struggle with emotional pain that is often acute but they are able to meet the everyday demands of their lives, putting the grief aside when required. Those in the recovery pattern find that grief seriously impinges on their present quality of life but they are nevertheless moving towards their pre-grief state. The remainder experience prolonged grief that is enduring and extreme, frequently requiring the help of mental health professionals.

It is this latter group with which I am primarily concerned in this paper. Societal as well as personal factors contribute to the depth of suffering experienced by these women and, frequently, by their partners. It is my hope that a presentation of these factors will help us in our compassion and support for those whose loss, whether acknowledged or unacknowledged, conscious or unconscious, dominates their lives and frequently impacts the lives of those around them.

The grief of miscarriage and stillbirth

In Australia the loss of a baby before the first twenty weeks is called a miscarriage; after twenty weeks the loss is a stillbirth. The grief occasioned by a miscarriage for both the woman and her partner is often underestimated with both anxiety and depressionbeing possible consequences of the distress following miscarriage.[3] A stillbirth is even more devastating; the intensity of grief has been found to be greater when gestational age is longer.[4] Parents are seldom prepared for the possibility of the loss of their baby in antenatal classes, intended as they are to provide support for a healthy live birth. Baby magazines do not engage with it; friends do not know how to react. The woman and her partner are often left alone to deal with the pain of loss, unaware that there are many other like sufferers.

In fact pregnancy loss is quite common with twenty-five percent of women experiencing a loss of some kind during their pregnancy and one percent of couples suffering recurrent losses.[5] Nevertheless, the woman often encounters emotional isolation as she struggles to come to terms with her grief, often feeling that even her partner does not understand her experience. The agonising search for an answer to the question “Why?” can be compounded by feelings of failure and frustration, and sometimes by guilt and shame, particularly for those with repeated losses. Both miscarriage and stillbirth generate a unique set of complex emotions which insensitive responses from family, friends and professionals can exacerbate. For example, a well-meaning comment of “You’ll get pregnant again” or “It was only a miscarriage” or “It was probably for the best” will just increase the grieving mother’s disappointment and sense of isolation.

Parents need to find ways to manage their grief, grief that can seem to tear them apart. These ways vary according to the circumstances and unique needs of the mother or couple. Frequently women who have had a miscarriage need to recognise that they have a right to grieve even if their loss seems considerably less than that of others who have, for example, lost a child at birth or in infancy. Karen Edmiston poignantly conveys the reality of such grief: “When does life begin? Conception. When does life begin to be important, memorable, meaningful, sacred, worth grieving over? Conception.”[6]

Women grieving the loss of their baby need to accept that little, often unidentifiable, things can trigger a recurrence of grief. They need also to find ways of coping with their grief. Strategies for coping with loss to miscarriage can be many and varied. Some mothers use online resources, blogging or creating an online memorial; others will decorate the Christmas tree with the child’s memory in mind. The family may acknowledge their dead child in the “count” of their children.[7] There are many other means of acknowledging the reality of the deceased child’s life.[8] Appropriate professional intervention can also make a significant difference. There is evidence that supportive hospital care can aid both physical and emotional recovery following a miscarriage.[9]

In giving birth to a stillborn child the mother is confronted with extremely complex emotions. Life and death converge.[10] There has been a birth but there is silence; instead of welcoming their child into the world the mother and father must farewell their baby. One woman observed, “I am angry, unbelievably sad. I feel lonely, lost and beg to wake up from this nightmare. My whole being has been ripped to shreds.”[11] Many mothers understandably report feelings of emptiness that touch them both emotionally and somatically.[12] Subsequent pregnancies are likely to generate much anxiety with the fear that failure may attend this pregnancy also. Mothers who have miscarried often lament that there is no body to hold and ultimately to bury. Those who have a stillborn child do have that option and many claim it is a help in their grieving process.[13]  

Whether the loss in pregnancy is due to miscarriage or to stillbirth, enormous sensitivity and compassion is needed to convey a felt sense of support to the grieving mother and her partner. The grief of loss due to miscarriage and stillbirth generates a range of distressing emotions.[14] However, the grief associated with an induced abortion is even more distressing because it has often to be hidden due to fear of societal judgement. Abortion can generate a complicated grief that impinges upon lives with disturbing and long-term consequences.

The grief of abortion

A preliminary reflection

The evidence regarding the psychological or mental health risks associated with an abortion supports the positions of neither the pro-life nor the pro-choice movements.[15] A study of 500 women to the age of thirty revealed that the majority of respondents reported that they had made the “right decision” in having an abortion.[16] The researchers comment that these findings call into question “strong pro-life positions that depict unwanted pregnancy terminated by abortion as consistently having devastating consequences for women’s mental health.”[17] On the other hand the results do not support the pro-choice movement either insofar as the movement argues that abortion is without any deleterious mental health consequences.[18] Certainly there is no evidence to substantiate the notion that abortion reduces the mental health risks associated with an unwanted and continuing pregnancy.[19]

Instead, it is claimed that there is justification for holding a “middle-of-the-road position” wherein  mental health problems do arise for those women who experience abortion as a “stressful and traumatic life event.”[20] Coleman goes further in insisting that “abortion is associated with moderate to highly increased risks of psychological problems subsequent to the procedure.”[21] Moreover, for those women with a prior history of abortion there is evidence that mood disorders and substance abuse significantly increase.[22] It is with those for whom abortion and its sequelae are traumatic and enduring that I am concerned.

The complicated grief of abortion

A range of circumstances may trigger the perceived need for an abortion. The woman approaching menopause may feel she simply cannot “do babies” again. The woman may suffer a disability. There may be migrant and cross-cultural problems that militate against a woman being pregnant outside marriage. The major group, however, that presents for abortion is the 15-25 year age group.

The grief of abortion is complicated. The woman who has had an abortion is meant to be relieved that her “difficulty” has been resolved. She is not expected to grieve. Indeed, neither she nor her partner feel they have permission to grieve.[23] Grief may not surface until many years later. The impact of the abortion may only be revealed, for example, in the context of psychological help for difficulties in relating to her marriage partner. Or the repressed trauma of an abortion may trigger painful somatic memories, the meaning of which is only discovered with therapeutic support.[24] Karol Woytyla observed that abortion may cause “an anxiety neurosis with guilt feelings at its core, and sometimes even a profound psychotic reaction” and that sometimes decades later a depressed woman may “remember the terminated pregnancy with regret and feel a belated sense of guilt.”[25]

 In the immediate aftermath of an abortion it can be a shocking surprise to a woman when she finds herself grieving her lost child with no tangible means of remembering her baby. In this respect the grief of abortion can be similar to miscarriage. There are, however, additional factors that confound the grieving process.

Often significant others have exerted pressure upon her to have an abortion, with self-interest either consciously or unconsciously in mind: her partner, her parents, friends, the dearth of adequate counselling support at an abortion clinic.[26] Abortion is usually offered to a woman as a quick solution that can resolve the many social, economic and, for younger women, educational problems confronting her. Hence the choice to abort is typically a forced choice. These pressures and the ensuing shame and guilt create the circumstances for much more mental disturbance than that occasioned by miscarriage or stillbirth. The stress subsequent to abortion has been seen as so extreme that the notion of a “post-abortion syndrome” has been proposed.[27]

The literature presents a range of debilitating psychological problems that a woman may suffer subsequent to abortion: low self-esteem, guilt, depression, suicidal thoughts, broken relationships, nightmares, flashbacks, anger, drug and alcohol use, sexual promiscuity and dysfunction, phobias and compulsive disorders. She may also find an inability to express emotions and discover that events that remind her of her dead baby hinder her engagement with age-appropriate activities. So, for example, she may be unable to attend a friend’s baby shower, or rejoice in a friend’s pregnancy. Her interaction with children can become unhealthy, either fearing or abusing them.[28]

Abortion affects not just the woman. Men, too, can be affected by abortion. They can feel powerless and angry if the decision to abort was made independent of them. On the other hand, if they pressured the woman to abort, guilt and sorrow may surface months or years later. Families and siblings of the dead child are also affected. A child who has been told that “if the baby is not all right the doctor is going to send the baby back to God,” may worry that he or she also is not “all right.”[29] Such anxiety generates significant existential insecurity with behavioural consequences for the child.

Those who suffer the grief of abortion, whether the woman, her partner or others affected by the abortion, need understanding and compassion. They also need hope.[30] I turn now to consider the ways in which sufferers of loss in pregnancy can be supported.

Care for those suffering loss in pregnancy

Pope Benedict XVI called for an “attitude of merciful love” to those suffering the effects of abortion and divorce.[31] And, indeed, there is an increasing awareness of the need to support those suffering grief following a loss in pregnancy.

Women do ring up various agencies looking for support after an abortion. It is very important to receive them in a non-judgemental manner, respecting the person and conveying understanding and compassion.[32] In the case of an abortion, such a response does not negate the seriousness of what has occurred.[33] It does, however, demonstrate that the value and dignity of the person has primacy in the eyes of the support person. Empathic support will enable a woman to do the necessary work of grieving, which is a first and essential part of the journey towards healing.

Whether it is a miscarriage, stillbirth or abortion that is the issue, there is a particular type of listening that provides a healing space in which the person, woman or man, feels safe and hence able to open up to the painful depths within, as well as open out to the listening person. It is the empathic, reflective listening that occurs when the support person is fully present in spirit to the suffering individual. Such listening is fully engaged; the woman knows she has the full attention of the listener. Moments of silence are valued and not hurried over. Periods of crying are quietly accepted. The full range of emotions must be recognised as a normal part of the grieving process:

The dreadful despair must be accepted as such and must be regarded as appropriate to this particular life situation. In addition, the chaotic emotions, especially the anger, must be endured. This is made easier by an understanding that the emotional chaos represents the dismantling of the old patterns of relationship and the old habits and therefore also the creation of a new potential.[34]

In helping people recognise, acknowledge and accept their grief, the counselor is also helping to effect transformation of the personality. The way is being created for old habits of emoting and thinking to be replaced by new, more constructive ones. For this to happen it is essential that the grieving process is given expression.

For those suffering the grief of an abortion the work done by the Project Rachel Ministry is particularly helpful.[35] In the context of a retreat for those who have had an abortion, spiritual ministry reaches deep into the wounded spirit of those who have felt condemnatory judgement from themselves, the church or the community. Again, listening and acknowledgement of the woman’s pain must be given priority as instanced by the following observation:

I have found that time taken to listen to the story in some detail is all that’s needed to help make the connection. Many people may have listened to the story – although usually it is only a few – but when the person is listened to by the priest something happens to connect the person with God, forgiveness and their need for spiritual healing. While God’s healing is not dependent on a priest, it is clearly important for some to hear the priest acknowledge the pain they suffer for this spiritual healing to take place. This is especially true for those who have felt rejected by a priest or the church.[36]

Towards hope: an existential reflection

One of the consequences of an abortion, or indeed of any form of pregnancy loss, can be an identity crisis.[37]People who have been subjected to extreme suffering frequently find that their usual modes of self-experience and of relating to the world have been stripped away.[38] They experience agitation and restlessness. They speak of feeling “lost” and of being separated from others in ways that are distressing to them. Their suffering challenges their previous felt-sense of presence to themselves. It also challenges their relationship with God who often appears painfully absent. They have been stripped of their previous roles and personas. Their self-concepts have changed and they have no new concepts with which to replace them. They are no longer able to make sense of who they are. Emotionally, socially, cognitionally, somatically and spiritually they are in new and unfamiliar territory.  They are exposed to a mysterious and disturbing void at the core of their being and a profound existential self-question arises from that experience, the question “Who am I?” Learning to accept their emptiness with equanimity can be foundational for significant transformational change.

By attending to the experience of emptiness, and to the existential question that subsequently arises, people can be led to a vocational exploration, answering the question of “Who am I?” with the discovery of what God is calling them to do.[39] Indeed, as Pope Benedict XVI has observed, in affirming the dignity of the human person and the human person’s capacity to love, “[P]eople are able to respond to the loftiest vocation for which they are created: the vocation to love.”[40] The question for the person on the way towards healing will be the unique form in which that vocation to love will be expressed. It is encouraging for those involved in the work of “healing of souls” that they are also contributing to the salvation of humanity for, as Pope Benedict XVI observed, “without the healing of souls, without the healing of man from within there can be no salvation for humanity.”[41]

Conclusion

Loss of a child in pregnancy, whether due to miscarriage or stillbirth or abortion, is a cause of great grief and suffering. Everyone recognizes that stillbirth is extremely painful, but people often underestimate the extent of the grief also occasioned by miscarriage. Both circumstances require compassion and sensitivity on the part of others. However while miscarriage and stillbirth cause significant grief, they have not been associated with clinically recognised mental disorders to the same degree that abortion has. Whereas the death of a baby in miscarriage and stillbirth happen to a woman, in the case of abortion a woman chooses to have her baby die. However, the choice is a forced choice, a factor which significantly complicates the grieving process. Pressures exerted by her partner, her family, her culture and her psycho-social needs can all combine to create a perceived need to abort. Mental disorders, substance abuse and relational difficulties can then impact on women’s lives for years. Increasingly organizations such as those mentioned above are becoming available to assist women and their partners to acknowledge and work through their grief. As women and men do so, they are afforded the opportunity to find God’s grace in their suffering and to see that God’s love can transform even the darkest experience, giving their lives meaning and purpose.

Meredith Secomb has a PhD in theology from the Australian Catholic University (Melbourne) and has worked as a clinical psychologist in both the public and private sectors, the latter specialising in the interface of psychology and spirituality. This paper was originally delivered in Melbourne at the 2013 National Colloquium for Catholic Bioethicists which explored the topic “Issues in Mental Health and Drug Addiction.”

  


[1]Elisabeth Kübler-Ross, On Death and Dying (London: Tavistock Publications, 1970).
[2] See especially George Bonanno, The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After a Loss (New York, NY: Basic Books, 2009), 6-7.
[3] See Philip M. Boyce, John T. Condon, and David A.  Ellwood, "Pregnancy Loss: A major life event affecting emotional health and well-being," Medical Journal of Australia 176, no. 6 (2002): 250-251; K. Conway and G. Russell, "Couples' Grief and Experience of Support in the Aftermath of Miscarriage," British Journal of Medical Psychology 73, no. 4 (2000): 531-545; Pamela A. Geller, Danielle Kerns, and Claudia M. Klier, "Anxiety following Miscarriage and the Subsequent Pregnancy: A Review of the Literature and Future Directions," Journal of Psychosomatic Research 56, no. 1 (2004): 35-45; Ingrid H. Lok and Richard Neugebauer, "Psychological morbidity following miscarriage," Best practice & research. Clinical obstetrics & gynaecology 21, no. 2 (2007): 229-247; Richard Neugebauer and others, "Depressive Symptoms in Women in the Six Months after Miscarriage," American Journal of Obstetrics and Gynecology 166, no. 1 (1992): 104-109.
[4]M. C. J. Cuisinier and others, "Miscarriage and Stillbirth: Time Since the Loss, Grief Intensity and Satisfaction with Care," European Journal of Obstetrics & Gynecology and Reproductive Biology 52, no. 3 (1993): 163.
[5]Zoe Taylor, "Pregnancy Loss: Surviving Miscarriage and Stillbirth," (2010). http://www.amazon.com/Pregnancy-Loss-Miscarriage-Stillbirth-ebook/dp/B003CQIB0A/ref=sr_1_1?ie=UTF8&qid=1354408593&sr=8-1&keywords=Zoe+Taylor (accessed December, 2012), loc. 73.
[6]Karen  Edmisten, After Miscarriage: A Catholic Woman's Companion to Healing and Hope (Cincinati, OH: Servant Books, 2012), 6.
[7] See Edmisten, After Miscarriage: A Catholic Woman's Companion to Healing and Hope, 6; Taylor, Pregnancy Loss: Surviving Miscarriage and Stillbirth, loc. 326.
[8]Taylor, Pregnancy Loss: Surviving Miscarriage and Stillbirth, loc. 326.
[9]K. Stratton and L. Lloyd, "Hospital-based Interventions at and following Miscarriage: Literature to Inform a Research-practice Initiative," Australian and New Zealand Journal of Obstetrics and Gynaecology 48, (2008): 5.
[10]Joanne Cacciatore, "Psychological Effects of Stillbirth", Elsevier http://www.sfnmjournal.com/article/S1744-165X(12)00102-3/abstract.
[11]Taylor, Pregnancy Loss: Surviving Miscarriage and Stillbirth, loc. 2383.
[12]Sherokee Ilse, Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death (Maple Plain, MN: Wintergreen Press, 2008).
[13]Badenhorst and Hughes observe that there is no evidence-based data for such a practice and that it “may have adverse effects, including symptoms of post-traumatic stress disorder,” for which see William Badenhorst and Patricia Hughes, "Psychological Aspects of Perinatal Loss," Best Practice & Research: Clinical Obstetrics & Gynaecology 21, no. 2 (2007): 249.Further studies are needed in this regard.
[14]Note, however, that there is no evidence to indicate that such distress is clinically significant. For the observation that there is no consistent association between pregnancy outcomes, other than abortion, and mental health, see David M. Fergusson, L. John Horwood, and Joseph M Boden, "Abortion and Mental Health Disorders: evidence from a 30-year longitudinal study," The British Journal of Psychiatry 193, (2008): 448.
[15] Implicit in this dichotomy is a failure to recognise the movements which adopt neither position, but rather uphold the rights and values of both the woman and her child, for which see “Feminists for Life” (feministsforlife.org) who argue that women should not have to make a choice between their place in society and their unborn children. Feminists for Life argue that as a society we need to address the lack of psycho-social, economic and spiritual resources that prevent women bringing their children to term.
[16]David M. Fergusson, L. John Horwood, and Joseph M. Boden, "Reactions to abortion and subsequent mental health," British Journal of Psychiatry 195, (2009): 425.
[17]Fergusson, Horwood, and Boden, "Reactions to abortion and subsequent mental health," 425.
[18]Fergusson, Horwood, and Boden, "Abortion and Mental Health Disorders," 450.
[19]Priscilla K. Coleman, "Abortion and Mental Health: quantitative synthesis and analysis of research published 1995-2009," British Journal of Psychiatry 199, (2011): 185.
[20]Fergusson, Horwood, and Boden, "Abortion and Mental Health Disorders," 450.
[21]Coleman, "Abortion and Mental Health," 183.
[22]N.P. Mota, M. Burnett, and J. Sareen, "Associations between Abortion, Mental Disorders, and Suicidal Behaviour in a Nationally Representative Sample," Canadian Journal of Psychiatry 55, no. 4 (2010): 239-247.
[23]E. Joanne Angelo, "The Psychological Aftermath of Abortion for Children and Families: A Clinical Perspective," in Oil on the Wounds: A Contemporary Examination of the Effects of Divorce and Abortion on Children and their Families ed. Livio  Melina and Carl A. Anderson(Garden City Park, NY: Square One Publishers, 2011), 193-194.
[24] See Babette Rothschild, The Body Remembers (New York: W. W. Norton & Company, 2000).
[25]Karol Wojtyla, Love and Responsibility (San Francisco, CA: Ignatius Press, 1993), 285.
[26]For an excellent presentation of the range of factors confronted by a woman who has experienced abortion, including comments on the poverty of pre-abortion counselling, see Melinda Tankard Reist, Giving Sorrow Words: Women's Stories of Grief after Abortion (Sydney: Duffy and Snellgrove, 2000), 12-43.
[27] See John J. Dillon, A Path to Hope: For Parents of Aborted Children and Those who Minister to Them ( Williston Park, NY: Resurrection Press, 1990), 20-33; Vincent M. Rue, "The Psychological Realities of Induced Abortion," in Post-Abortion Aftermath, ed. Michael T. Mannion(Kansas City, MO: Sheed and Ward, 1994), 5-43. Note, however, that the current Diagnostic and Statistical Manual of Mental Disorders has not adopted this proposal and does not cite psychological consequences of abortion as a recognized syndrome, for which see American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, Fourth ed. (Washington, DC: American Psychiatric Association, 1994). Certainly the stresses occasioned by abortion constitute an adjustment disorder with anxiety and depression being concomitant symptoms.
[28]See Dillon, A Path to Hope, 20-30.
[29]Angelo, "The Psychological Aftermath of Abortion for Children and Families," 195.
[30] See David C. Reardon, ed. Hope and Healing (Springfield, IL: Elliot Institute, 1998), 11.
[31]His Holiness Benedict XVI, "Address to the Participants at the International Congress," in Oil on the Wounds: A Contemporary Examination of the Effects of Divorce and Abortion on Children and their Families, ed. Livio Melina and Carl A.  Anderson(Garden City Park, NY: 2011), xi.
[32] Note the unfortunate experience of Jilly Smith who, on first seeking support, was told that she needed to ask God’s forgiveness for her sin of abortion. This was a response that totally alienated her from the Christian agency, for which see Jilly Smith, "How to Feel Better after an Abortion: A Neutral Guide to Recovery," (Amazon Digital Services, 2012). http://www.amazon.com/Feel-Better-After-Abortion-ebook/dp/B00846MZJG/ref=sr_1_1?ie=UTF8&qid=1357366271&sr=8-1&keywords=Jilly+smith (accessed December 2012).
[33] For Pope John XXIII’s observation that we must “distinguish between error as such and the person who falls into error,” see Jean Laffitte, "To Act According to the Merciful Example of God," in Oil on the Wounds: A Contemporary Examination of the Effects of Divorce and Abortion on Children and their Families ed. Livio Melina and Carl A. Anderson(Garden City Park, NY: Square One Publishers, 2011), 214.
[34]V. Kast, A Time to Mourn: Going through the Grief Process, trans. D. Dachler and F.  Cairns (Einsiedeln, Switzerland: Daimon Verlag, 1988), 53-67.Emphasis added.
[35]US Catholic Bishops, Project Rachel Ministry: A Post-Abortion Resource Manual for Priests and Project Rachel Leaders (Washington, DC: United States Conference of Catholic Bishops, 1999). See also Vicki Thorn, "Project Rachel: A Sacramental Response to the Grief of Abortion," in Oil on the Wounds: A Contemporary Examination of the Effects of Divorce and Abortion on Children and their Families ed. Livio Melina and Carl A. Anderson(Garden City Park, NY: Squarae One Publishers, 2011), 219-230.
[36]Fr Peter Maher, http://www.rachelsvineyard.org.au/, Accessed Dec 12, 2012.
[37]Michael T. Mannion, ed. Post-Abortion Aftermath (Kansas City, MO: Sheed and Ward, 1994), 3.
[38] The following account derives from my own experience of working at the interface of psychology and spirituality.
[39] For an extended discussion of this issue see Meredith Secomb, “Hearing the Call of God: Toward a Theological Phenomenology of Vocation” (PhD dissertation, Australian Catholic University, 2010).
[40]Benedict XVI, "Address to the Participants at the International Congress," xiii.
[41] Pope Benedict XVI cited in Bishops, Project Rachel Ministry: A Post-Abortion Resource Manual for Priests and Project Rachel Leaders, viii.

Intensive care: because you’re worth it?

Consultant in Paediatric Palliative Medicine Richard Hain explores the question: "Are there children for whom intensive care and resuscitation are not appropriate?" Beginning with the notion that a "sense of moral discomfort is surely not a robust enough base on which to build a sound ethical approach," Hain argues that agreement about the need to withhold or withdraw treatment can potentially mask serious differences about the value of children with life-limiting conditions.

Available online at: http://www.thinkingfaith.org/articles/20121211_1.pdf

The dubious ethics of creating children with three genetic parents

Margaret Somerville discusses ethical issues concerning the creation of a child with three genetic parents. She describes such a procedure as altering the human germline, and discusses the ramifications of this in terms of international legal and ethical positions that have been held up to now.

This article is available online here: http://www.mercatornet.com/articles/view/the_dubious_ethics_of_creating_children_with_three_genetic_parents