Bereavement care. More than just part of the job.

I spoke at a seminar this week organised by La Trobe University’s centre for Health, Law and Society. Examining  reproductive loss from legal, social and political perspectives it was attended by about 20 people from varying backgrounds – law, psychology, activism, anthropology, peer support and midwifery. I was invited to share a midwife’s perspective on bereavement care.

Only one of the hardest presentations I’ve ever written …

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August Sander’s People of the 20th Century

 

  • The role of the midwife in bereavement care.

  • Tensions in care.

  • Future ideas…

This list is supposed to be a template for my ramblings – hopefully it will fool you into thinking that this thing has a structure. As in my research currently, my ideas are undisciplined and messy at the moment and that is how you will hear them today.

Hopefully they will be helpful in at least starting discussion or stimulating questions.

Thanks so much for asking me to be involved today. There is much about midwifery that I feel strongly about and bereavement care is no exception.

Thanks for naming the taboo and breaking the taboo with today’s seminar.

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Midwifery 101.

Midwives care for women through the continuum of pregnancy, labour, birth and the post partum period. In the maternity system in Australia midwives are present at every birth of a baby, regardless of the type of birth.

Normal births are of course what we are trained for, but we also stay “with woman” regardless of the birth outcome.

We practice “watchful waiting” and we work as much as possible with physiological events as they unfold.

Although most of us have trained in pretty heavily medicalised systems we are believers in pregnancy and birth as part of normal life – these are for us “normal physiological events”. Sometimes we have to work hard to “keep things normal” too – when events are threatening to spill over the boundaries into what is considered “abnormal” or “non-reassuring” or beyond the parameters of the particular institution we are working for – when there is a risk of intervention and what we refer to as the “cascade of intervention” as more and more interventions follow. These actions can be justified by the need to minimise risk, increase surveillance, expedite labour or birth or relieve the suffering of the birthing mother.

This is definitely a contested space in modern maternity care.

We seem unscientific in our mistrust of medical intervention, even unrealistic or unnecessarily reckless in our belief in the power of women’s bodies. Midwives live with the tension to varying extents.

Sometimes, too, we have to work in highly technical and medicalised situations with women who have serious medical conditions or who developed pregnancy or birth related complications.

And of course, sometimes we have to help women labour and give birth to their dead babies or to babies with serious or life-threatening abnormalities or who simply come too soon.

“With woman” is the meaning of “midwife” and we do this in all these situations.

We define ourselves as a constant support for women in what can be a vulnerable time and when they may be seen by many different caregivers.

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Providing bereavement care is a privilege for midwives.

Of course, being with women and families when their healthy, live baby is born is one of the biggest highs ever.

It is a glimpse into the universe. A glimpse that you might have three or four times in one shift on a busy night… or see three times in 45 minutes. Nonetheless a sacred moment.

In the balance of the universe, then, midwives understand the need for sensitive and supportive care for families deprived of that experience. So that these parents might too have a sacred moment.

Midwives recognise that this baby was born into love and a family and that this baby needs to be remembered and mourned, and the baby’s parents supported and cared for.

How things have changed in a generation or two – student midwives weren’t permitted to care for bereaved families when I trained and there was an unspoken rule that only “experienced” midwives could really do the work.

Unfortunately that meant that the work fell to a small number of midwives who did mostly bereavement care. There were no formal support systems for them – it also was traditional for them to be in charge of delivery suite at the same time that they were providing the care. Other midwives took on the rest of the workload and their care of bereaved families was intermittent rather than intensive.

It did also ensure some continuity of caregiver. It also in some way reflected the importance of this work by having the midwives with the most expertise and experience providing the care.

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What is the nature of bereavement care?

There is little definition of what is required of midwives in their role. It is an extension of their care role for women with live babies I guess. With some pretty fundamental differences. But it is not articulated. In the policy and procedure I read from the hospital the information was heavily procedural.

I would say that this is a significant tension in bereavement care: between providing relational, sensitive and personalised care and meeting procedural obligations.

There are a mountain of forms to fill out that are specific to bereavement care. They concern information for perinatal statistics, consent [or non-consent] for post-mortem, information for funeral directors, follow up appointments and so on. There are also the round of people who are usually involved in postnatal care that need to be informed about the nature of the birth… maternal and child health nurses will make a phone call if able… home visits from hospital midwives are offered. The woman’s GP will receive a delivery summary including the birth outcome.

These forms generate a significant amount of anxiety for midwives, for while they are part of a “team” of carers – the midwife co-ordinates the care. And this paperwork is distinctive for bereavement, so it is often unfamiliar. It also assumes a continuity for midwives – a “primary” midwife signs the care map and takes responsibility. And yet it’s rare that someone will take care of the woman throughout her hospital stay, much less beyond this.

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I want to talk more about the nature of bereavement care. What is it that makes it a privilege to be involved in.

I have been reading about embodied care and the work of French embodiment theorist, Maurice Merleau-Ponty.

How we humans are by nature social beings.

How there is an intertwining of knowledge and relationships. How the “I care” and the “cared for” share a reciprocity where both receive benefit. This reminds me of the intensity of the midwife-woman relationship. This is a relationship of embodied care – in contrast to much of the disembodiment we experience in our lives in the late post modern world. The midwife makes use of her connection to her own knowledge of her body – not always, statable, rational knowledge but rather pre-conscious or felt knowledge to care for the woman. By nature, this embodied knowledge is reciprocal – the midwife gains as much as she gives in her carer’s role. Unfortunately this kind of relationship is often discouraged in institutional settings where distance between cared for and the carer is encouraged by its systems and culture. Ostensibly this is to control the anxiety of the caregiver as per Isabel Menzies Lyth’s work on nurses. This is possibly amplified by feelings of guilt and blame in the case of a bereaved family.

Where in fact these care relationships are what make the job worthwhile.

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So back to talking about the nuts and bolts of bereavement care. In my workplace, as well as the midwives providing care, there is also a bereavement worker that is chosen by the woman – more religious or not, or maybe a genetic counsellor that a family has come to know over the pregnancy.

These carers work 9 to 5 but are also available on call to some extent.

Their responsibilities are to do with “intended arrangements” – they meet the family and discuss funeral or memorial service arrangements and follow up and refer to other services as needed.

The worker usually meets the woman and family once after the baby is birthed. There is scope for further contact via follow up phone calls in the coming weeks.

Interestingly, midwives are invisible in the hospital’s policy and procedure. They are barely mentioned. There is some expectation they will fulfil the tasks of the bereavement worker if the birth occurs after hours.

As a clinician I was often confused by what the role of the bereavement worker was. They sometimes had more time to spend with families than you could so that was welcomed… and they had expertise about arrangements for burial and memorial services and so on, but looking at things now I wonder about the wisdom of introducing yet another person to the experience. Now from a distance this looks like unnecessary fragmentation of care, but it would be great to hear how families respond to this. They may find it very helpful.

This is clearly an experience where relational care is clearly important… where midwives are practising their craft of being “with woman” for very vulnerable people.

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So what might be a better way to think about the midwife’s role in bereavement?

Maybe it’s about more honouring of the mother-midwife relationship. A commitment to continuity of caregiver is associated with better outcomes in midwifery care as proven by randomised controlled trials.

I often felt a sense of non-closure after caring for these families. I’m not sure whether that has to do with the nature of the care itself or perhaps of the enormity of the task. Possibly it is connected to being involved in an “unexpected outcome” –guilt perhaps?

We are conditioned to sharing happy events with families.

How can we feel satisfied with our care when the outcome is devastating?

Families too, can have difficulty leaving the hospital – often without their baby. In some ways they fall into a hole or a chasm after discharge – ideally into the arms of a supportive family but not always. Because of the taboo conversations with others are difficult – there is much to be negotiated.

There is always medical follow-up after post mortem at an outpatient appointment – midwives might like the option of being involved in this. Maybe this wouldn’t provide closure… but a feeling of being cared for? Both for mother and midwife?

A familiar face? A bridge between the medical and the maternal?

Someone who was there and knows the intricate details of the “case” as well as how people were during the experience.

A chance to talk about life since then.

A baby death in whatever form is taboo. What are the impacts for caregivers? It is often an unspoken experience for midwives – not even to be shared with our significant others. What impact on our own pregnancies and birth experiences? We count the weeks of viability to ourselves, we hold a hidden knowledge that even a baby at 38 weeks might die mysteriously. It would be great to hear these experiences.

Given how much has changed in a few generations, might we allow for more stories to be told? – beyond the front page hysterics of “preventable baby deaths”?

And the public airing of women’s stories of lost babies in situations they couldn’t understand…

I have argued for more recognition of the midwife’s role in bereavement care. We are the ones standing next to the woman through it all. Systems can change to allow for relationships to flow between bodies.

People seek relationships in times of trauma.

Midwives would need support to do this work – formal and structural and dedicated.

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I had a formative experience with two friends.

Their first baby came “too soon” at 22 weeks. They brought her home with them soon after she was born and I was invited around to visit.

I learnt so much from them. I stayed for a few hours and we talked through the experience of the past few days. They had brought their baby home and I cuddled her and we took photos and talked to her and cried a lot together.

I attended a funeral ceremony with their friends and family a few days later. They are both health professionals and they were determined to acknowledge the birth of this first child of theirs.

They brought others into their circle of care.

They had more children after this one – but she is always part of their family.

There is no question that it was a privilege for me to be involved in the events surrounding her death – and birth, and then in seeing how the experience fitted into the rest of their life.

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Joining the Circus

I have a friend who is pregnant with her first baby.

In the last few weeks I have been thinking about what books would be helpful for her to read in preparation for motherhood.

So I read a few.

To be honest there were few such books around that I thought would be helpful at all. My first child was born 16 years ago, but I have been working and thinking (!) as a midwife since then, and there seem to have been few bright moments in the Transition to Motherhood genre.

The books I have just read were a mixed bunch.

I think I can envisage the editorial meetings – “maybe a few more funny stories about the [INSERT: ridiculous health professional] who tried to help you to breastfeed/get your baby to sleep/push your baby out of your vagina/join a parents group”….never mind how hard people may have worked to help you.

Many of the writers who share their stories of becoming a mother oscillate between themes of “I’m special because this is what happened to me” and “my experience is an archetype of what becoming a mother is”.

Most worrying is the theme of belittling health professionals and structured support systems as being “not for them”.

“I’m not much of a joiner”.

What does that even mean?

Several writers talked about their reluctance to join a new parents group where the only thing members had in common was the lottery of giving birth. What was the reason for their reluctance?

New parents groups are a phenomenon of living in the Maternal and Child Health system of the People’s Republic of Victoria, and are also present in other states of Australia.

Maternal and Child Health Nurses, who work for local councils, organise groups for parents to meet when their babies are between 6 weeks and 3 months old. Usually there are structured meetings for 6 weeks or so at the Centre. After that groups may continue to meet informally at members’ homes or playgrounds or community centres or playgroups.

Research about mothers and parents and playgroups indicates the strong social role that such groups play in a context where isolation is more prevalent – especially for mothers and children. These groups have also been found to provide, at the basic level, an opportunity for mothers and families to receive care – different to other modes such as clinic or home visits.

What worries me is that prospective mothers reading these books get the idea that these groups are daggy or a waste of time – especially if they aspire to be the uber cool inner city types that these authors often are.

I also worry that these attitudes add to the ongoing narrative of:  “we only like to hang out with people who are like us”.

Isn’t this the narrative of an oppressed group?

My own involvement with the Australian Breastfeeding Association came about at least partly in order to deal with general societal ambivalence about breastfeeding. ABA meetings were a haven where you could breastfeed your older toddler with freedom.  [*sorry freaked-out new mums].

Not that my mother’s group were anti-breastfeeding. But I guess I had a bigger aspiration to be involved in community-based breastfeeding support.  The added benefit of these meetings was that there were women with babies and children of all different ages attending. Having a child who didn’t walk until he was almost two and breastfed for several years longer than that was definitely less of a drama at ABA meetings.

Grassroots groups like mother’s groups or playgroups are inherently subversive. I wanted to be a part of that – an autonomous collective of sleep-deprived nobodies – no-one could control us (not even the maternal and child health nurse once we busted out of her centre).  No-one was interested in us except us.  But we were building the sorts of networks that help you when you have another baby or go through IVF or you need a job locally or need someone to have a cup of tea with when these kids finally and suddenly have their first day at school.

Why wouldn’t you want to be a part of that?

Not a joiner? That’s ok. But your child will need other kids at some point – they can’t play with you in the café for ever.

Nor should they.

 

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August Sander’s People of the 20th Century.

The Woman Beneath the Skin. How do we know our bodies?

f5636b29c20358604ed05357c3bee8aaBarbara Duden is a German historian who has studied the work of Dr Johann Storch –  a physician working in a German town called Eisenach in the 18th century. He kept detailed clinical notes on his patients and Duden is particularly interested in his work treating female patients.

Storch’s medical world is that of purges and controlled bleedings and compresses…and yes, leeches.

As Duden states, women’s bodies are conceived in terms of fluxes and flows, a million miles from the biomedical model we have adopted and learnt over the last 150 years or so. In Storch’s world, women go to see the doctor to seek help when they have exhausted their own resources in terms of home-made treatments, advice from friends or just putting up with their state of unwell. I didn’t say “sickness” there because that doesn’t really describe how these women viewed their own bodily dysfunction. Their idea of a state of unwell for themselves was more of a sense of the “flows” being slowed or blocked. Many of this was to do with menstrual flow (as you would imagine).

At no time did any of these women undergo physical examination by the good doctor. Well, not unless they were about to die, actually. Then they might relent and finally give consent to this (in hope of a cure?). In fact, the doctor rarely even touched his patients – societal rules of modesty forbade it.

Many times the doctor never actually saw the patient – again, the status of women in this society (and no doubt low literacy levels) meant that women would often have their husbands or fathers or brothers write to the doctor, explain the symptoms and the doctor would prescribe appropriate treatment or send back compounds for ingestion or application.

As Duden studied the doctor’s writings she struggled to really get in touch with these women through the written word.  Story after story of purgatives and laxatives and compresses and powders and bleeding – so far removed from our modern ideas of bodies and medical diagnosis and treatment. As a woman living in the biomedical model in the early 21st century her view of her own body seemed so distant from theirs…and yet she saw her task as really trying to understand their sense of their own bodies.


To achieve this understanding, Duden gradually realises she has to recognise and then abandon her own embodied sense of self and look at their’s.

When she does this, she frees herself from trying to diagnose them in the biomedical paradigm – and begins to really understand what is going on for them.


She concludes that the nature of the care these women seek is closer to a wholistic one than what we call medical care now.

These women are listened to – really listened to by the physician. Their stories and their interpretations of their illness are  believed absolutely. And of course these stories or retellings of their story form the foundation of his knowledge of their state of being. He literally has little else to go on!

Duden invites us to reflect on our own model of medical care.

The notion of the deus ex machina is Duden’s description of the nature of 18th century doctoring: the deus ex machina is a device that progresses a theatrical performance when things have stagnated a little in the storyline. Something dramatic or magnificent is introduced (think –  a new sports car is purchased by one of the characters on Neighbours) in order to get the show going again.

Where is the physician in this?  In the eighteenth century, the physician is the circuit breaker – visiting him and telling him your story of unwell is a pause in proceedings.

He listens, he prescribes or carries out a procedure – something that you both think might help: a bleed, a powder, a compress to be repeated at home.

There is no promise of cure. Only maybe a hope for improvement – from the doctor and the patient?

And a feeling of having been listened to…of having shared your problems.

Many times, the problem is righted. Sometimes not.  Many times there is no further contact with the good doctor.

Duden gives an example: a 60+ year old woman who has stopped her menses.

He prescribes a compress – she is cured.

There is no rational reason why she should be cured, or even that she needs a “cure” from what we would probably call menopause. The woman defines the problem, the doctor seeks to treat with the knowledge available to him.


 

Is there something present in this style of care that we miss out on today?

I’m not advocating for a return to leeches, but how distant are our bodies from our own selves?

How could we benefit from seeing our bodies as systems of fluxes and flows that need restoring to equilibrium rather than “fixing” by biomedicine?

Fixing breastfeeding

 

There is no doubt that concerns about infant mortality rates in the USA at the end of the nineteenth century played a role in motivating the medical profession to find new, safe ways of providing nourishment to small babies.

I just can’t work out why there was so little effort to try and work with human lactation.  Wet nurses were (perhaps rightly) widely condemned, but lactation advice seemed to consist solely of offering something else to feed the baby. This complementary feeding almost inevitably led to weaning because of reduced ( or further reduced) feeding at the breast and then reduced stimulation to make more milk.

What about human milk banks? They seem not to have been thought of … formula was the substitute.

Milk sharing must have been endemic, just from the view of infant survival. And it’s a different phenomenon to wet-nursing: a trusted friend or family member provides the milk (and perhaps the breast), rather than a financial transaction. It is an act of trust between mothers. And then there’s the safety of having milk provided to your baby, that another mother is giving her baby. Many of you will know of the special “cousin” or sibling relationship that milk-sharing confers on babies as they grow up in Islamic cultures.

Dr Virginia Thorley is a Lactation Consultant, ABA counsellor and historian who has written about milk sharing:http://www.virginiathorley.com/Links.html

A pervasive and  general mistrust of the functioning of women’s bodies was certainly at play: breastmilk couldn’t be trusted to be consistently wholesome (not surprising given the prescribed conditions necessary for this), women’s bodies were unlikely to be able to produce enough of the stuff, and if there wasn’t enough, you had to give something else instead.

The parallels with men managing childbirth are obvious. Why trust nature when intervention could help so much? Also consider the manipulation of nature with regard to the regulation of rivers and mechanisation of agriculture…

Formula was apparently more attractive because medical practitioners were able to manipulate its contents according to “the baby’s needs”. The implication is that mothers were harder to manipulate! You bet.

But also there was a fundamental distrust of mothers’ ability to care for their babies in general. “Maternal education” was seen as vital to improving infant survival. This was done by means of pamphlets and booklets being produced. But the paediatrician or family physician was seen as the authoritative key to infant well-being. And as he knew little about lactation physiology, most mothers would be bottle-feeding before long.

Thank-you doctor!

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Cult of the mother.

I’ve just spent a good many hours reading a book about the history of infant feeding in the USA.

Mothers and Medicine: a social history of infant feeding 1890-1950. By Rima D.Apple

It has been interesting to learn about the way breastfeeding was viewed at the end of the nineteenth century, just as artificial baby formula was being developed.  Although this is definitely a history of the US experience, we can allow reflections on breastfeeding in Australia where many broad cultural themes were similar, such as the role of science and medicine in everyday life, and the lived experience of women.

The “cult of true motherhood” or the “cult of domesticity” described how women were viewed in the latter part of the nineteenth century: women were defined by their role as mothers, and were entirely responsible for the well-being of their children.  Kind of nice to have the recognition, but at times it would have been a tough load to carry.

In the nineteenth century in the United States, breastfeeding was generally seen as the best way to feed a baby, but the lactating breast was also seen as a sensitive and unpredictable organ: milk supply could be effected by anything from a “fretful temper” to a “fright”, and breastfeeding was likely to overtax the mother’s well-being, causing a “general weariness and fatigue”. Lactating women were encouraged to eat well, exercise a little and cultivate a serene disposition(!).

Go on…breastfeed…just make sure you do it perfectly. Oh, and good luck.

The second best way to feed your baby (should your unpredictable breasts not do your asking, despite your serenity) was for another woman to feed your baby. But wet-nursing was also problematic: how to ensure that this woman from the working class would be eating well, maintaining some serenity and not wasting her precious milk on her own infant? Never mind the enduring view of character being conferred by a baby’s food source.

Infant mortality rates were alarming, criticism of wet nurses widespread. The medical and scientific solution to the problem was to further develop baby formula. Bottle feeding was seen as a thing able to be manipulated by science, unlike the vagaries and uncertainties of that most female of activities: lactation.

And so began an era of medical advice for infant feeding. While mothers were very special people who were expected to take responsibility for their children’s upbringing, they would need a little bit of help from medicine if breastfeeding wasn’t working. That help would be in a bottle of baby formula, perhaps suggested by a doctor qualified in the newest of medical specialties: paediatrics.o-VICTORIAN-BREASTFEEDING-PHOTOS-570