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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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?

speech made on leaving the best job ever…

WitchesIt’s almost a year since I left work to start full-time study as a PhD student. So ended ten years of part-time and casual work as a midwife in a major metropolitan maternity teaching hospital.

I hosted an afternoon tea in the postnatal ward – and I made a little speech, because I grew up in a family where making a speech was a way of marking an occasion… and because it all felt like a big thing to be doing.

This month I have started doing a few shifts back there … just to remind myself of the realities of clinical work and to catch up with friends and colleagues. It feels ok.

Jen’s end of work speech. 2/1/2014  

I have loved working here – although some days are better than others! I have great colleagues who care about the women they provide care for. I have met so many inspiring, interesting women and families and had the privilege of sharing what is a life-changing event with them. They personify what I think this place is all about – the highs and lows of human existence. And they let us experience this with them!
Our work as midwives is so important.

Didn’t catch that? I’ll say it again – our work is so important.
From the booking visit in clinic to the last home visit …. Sure we have expertise: we know plenty of stuff about normal pregnancy and birth. But we’re more than that – we’re another woman, we like having a chat, we care about the whole woman and we meet women where they are.
So then we write the dicky little sentences in the antenatal record about holidays planned, sickness in the family, concerns about another child, how last time’s experience is effecting this pregnancy…
And sometimes we are one of the very few people who have taken the time to listen, to care about what’s happening to this woman in her life. We may well be the only positive educational experience she has had. We can be part of a life-changing time for her – diet, exercise, relationships, doing something amazing for herself and her family by bringing a baby into the world.
So I’m leaving being a midwife because I love being a midwife so much! And people have asked me: “why are you leaving and doing this?”
The project I will do about Lactation Consultants is a means of learning how to do research. The masters sparked it for me – I realised there was so much research out there that can help our clinical practice, answer our questions, help us ask more and help us to live with the doubt.
Anyway, so that’s what I’m going to do. And maybe I’ll come back to help you guys do some research too.
Just one thing to finish with … I don’t think we’re very good at letting each other know how fabulous we are. Do me a favour – tell your colleagues – don’t just thank them for their help, but tell them how you admire their practice, their attitude to women, their commitment to caring, their ability to help a woman birth her baby.

And enjoy your work. Thanks