MUCH ADO ABOUT NOTHING?

As part of my online searches to discover new information about pregnancy loss research, coping strategies and management I stumbled upon an interesting thread of comments.

This comments thread was in response to a news article in The Guardian online. The article was about a lady who, after suffering multiple losses, decided to organise across the United Kingdom different commemorative services where people could come to say goodbye to their unborn babies. An opportunity, if you may, to have a “funeral” for the pregnancy loss and hopefully leave with some form of closure.

What sparked the debate was someone wondering if services like this would just make too much about an issue no one used to talk about in the past. Women would have a miscarriage, be it early or late or even have a stillbirth and the healthcare team would just pretty much clean her up and send her home. It seemed that this person was pining for such simpler times when people did not talk so much about their feelings and go on and on about the babies they lost.

The responses to this comment ranged from vehement disapproval: “you have obviously never lost a pregnancy!” (It turns out the person commenting never had, go figure!) to guarded support: “some women do take it too far”.

I do think times have changed. I think that the inevitable consequence of a society where women have a voice is that women will speak. At a time when, in the Western part of the world at least, women are educated, enlightened and empowered, people have to deal with the fact that these women will highlight issues that are important to them.

I have written already about the disenfranchised grief of pregnancy loss and so it should come as no surprise that I wholeheartedly support the idea of an avenue that permits women (and those close to them) to grieve.

I grant that there is a danger (in some circles) to talk this issue of pregnancy loss to death but from personal experience and from talking to others who have gone through it as well, there is a more present danger (especially where I come from) of not talking about it enough.

If, in Nigeria and other parts of developing society, we aspire to “promote gender equality and empower women” (MDG-3), then we need to find out and talk about the issues that are important to women – not just avoiding death but coping with life.

RESPECTFUL MATERNITY CARE

The Miscarriage Support and Information Centre is part of the White Ribbon Alliance and our June Action of the month is focused on respectful maternity care.

In their power point presentation designed for healthcare workers, they make a very valid point, a point that I am particularly passionate about.

“The concept of ‘safe motherhood’ is usually restricted to physical safety, but safe motherhood is more than just the prevention of death and disability. It is respect for women’s basic human rights, including respect for women’s autonomy, dignity, feelings, choices, and preferences”.

When having to manage complications of pregnancy such as early or late miscarriage, healthcare workers are often driven by a need to do what they feel is best to prevent death and disability. However, in caring for a woman during such a traumatic time, it is important to work with her and not just “for her own good”. It is important that she understands what is going on and why. It is important, for example, to respect her wish to not undergo a surgical evacuation even though you may feel it is the best option.

In the survey I conducted in Lagos, Nigeria of the 25 women who had experienced a miscarriage, 21 remember being treated with sympathy and understanding by the hospital staff. However, only 14 women felt that medical professionals were not to blame for the pregnancy loss. Why the disparity?

I strongly believe that these 11 who did not excuse the healthcare workers involved in their care are the women who did not understand what was going on, were not consulted, had nothing explained to them and had no choice in how the miscarriage was handled. Hence, they believe something was not done right.

When asked, in the same survey, about attributes in their healthcare professionals that were very important, “includes you in the choice of treatment” was not ranked very high by these women respondents. However, “tells you all that is going on and why” was ranked very important with “explains in words you understand” ranked highest of all.

As 2015 draws closer and closer, it is very important that healthcare workers and policy makers recognise that when we go beyond preventing maternal deaths and work towards maternal healthcare that is respectful of women’s feelings, choices and dignity we will not only “improve maternal health” but we will also “promote gender equality and empower women”.

UNBORN

I found this lovely video online. It is a choreographed expression of a woman’s feelings of grief and loss after a miscarriage.
Even if interpretative dance is not your cup of tea, the dance is beautifully performed and the video is short and skilfully directed.
Check it out.
http://vimeo.com/36184574 

ANITA’S STORY

Anita* was expecting her first child and was excitedly looking forward to buying baby clothes and preparing for her baby’s arrival. As she approached the completion of 7months of pregnancy, she couldn’t shake the niggling doubt that everything was not right.
“I started noticing that my tummy is going down as if someone is pressing my tummy”, she shared with me. She shared this fear with her husband but later dismissed it as she reassured herself that she had never missed an antenatal appointment or defaulted on any of her medications.
She however decided to arrange for an ultrasound scan. But the 5th of April, the day she chose to go for the scan, would prove to be a life altering day in Anita’s life.
According to Anita, the lady performing the scan suddenly burst into tears. One can only imagine the trepidation that went through Anita as she witnessed this. “I started asking the woman, ‘what is the problem? Tell me, what is the problem’ cos me I don’t understand why she is crying”, Anita recalled. Without being given any information, she was sent to a different place for a repeat scan.
With mounting anxiety, Anita watched as the man performed the scan again. He looked very sad and she could sense the pity in his demeanour as he looked at her. Once again, Anita demanded that she be told what was going on. All he did was ask her to go back to her clinic with the results of the scan.
That was when the bombshell hit. She was simply informed, “Ah. The baby is dead in your womb o”. Anita was in shock and in her own words, started to lose hope. She burst into tears and could not even compose herself to send for her husband; the staff at the clinic had to do that for her.
What followed was a traumatic two weeks and four days as she stayed in hospital undergoing all sorts of procedures and medication in order to push out her baby. When I asked her how she coped, she simply explained, “I have to have strong heart to save my own life...cos if I should lose hope, I could have been a dead somebody now” (sic). She admitted that the shock of the loss was still a very real and constant feeling but she felt that she needed to fight for her life; so this survival instinct took over and helped her through that physically and emotionally harrowing sixteen days.
As at the time when we spoke, Anita was still coming to terms with the loss. The main question that plagued her was what could have caused her baby to die. That was all she wanted to know. Was it something she did? Was it something the health workers missed? Time and again, she would find herself thinking about it and wondering what could have gone so horribly wrong. But, whenever she found herself deep in thought, her husband would get cross with her and tell her to stop thinking about it.
So now, all Anita can do is wait for her body to heal and hope that she will get pregnant again and that when she does, she will end up with a baby. As for her emotional scars; only time will tell.

* not her real name.

BREAKING BAD NEWS

As a House Officer, while on call we had a lady rushed into theatre for an emergency CS due to foetal bradycardia diagnosed on the CTG (i.e. the heart rate of the baby was reading about 80bts/min when a normal heart rate for a baby in the womb should be between 110 to 160bts/min). It turns out that the CTG (an out-of-date model compared to what is used in UK and the developed world) had been picking up the mother’s pulse and we delivered a macerated foetus (i.e. the baby had been dead for a while and was already decomposing – sorry for the graphic details).
It was left to the consultant paediatrician to leave the theatre and tell the father how a baby would not be coming out and why (the mother was under general anaesthesia and so was unaware of what had occurred).
Different guidelines on the management of pregnancy loss suggest that the most senior member of the team should break the news to the woman/couple wherever possible.
However, this raises a question for more junior doctors on the frontline of care. If, for example, you are the Medical Officer on NYSC (national service in Nigeria) posting and you are the first and only person most patients would see, how do you effectively deliver bad news? What qualifies you to deliver bad news? Can empathy only be gained with experience? Is that why the more senior health professionals should deliver bad news? If yes, does this mean that we will inevitably bungle up the delivery of bad news until we learn how to do it properly?
Personally, I was always uncomfortable with miscarriage and pregnancy loss. I am ashamed to admit that when I went in to see the mother the next day on my House Officer ward round, I could not look her in the eye, I did not offer my condolences for her loss; I just said, “good morning” and checked her vital signs. It wasn’t till I had experienced a loss myself and conducted the survey that I realised how lonely and scary such an experience could be. Empathy can really go a long way to make a difference in such instances.
While preparing for my PLAB exams (in order to be registered with the General Medical Council in the UK), breaking bad news was one of the skills I had to learn. It is also a module in BMJ Learning for continuing professional development. This is a topic that was never discussed while I was in medical school in Nigeria.
I don’t claim to know the answers to the who, how, when or why of the delivery of bad news. But I know that no matter what level you are at as a medical student, doctor, nurse or midwife, “I’m so sorry for your loss” is easy to say: there’s no law against that.

THE DISENFRANCHISED GRIEF OF PREGNANCY LOSS

Disenfranchised grief is defined as grief that is not socially supported, either because the relationship with the person lost is not recognised, the loss itself is not recognised or the griever is not recognised1. In the case of pregnancy loss, it is usually that the loss is not recognised making it difficult to grieve properly.
Across sub-Saharan Africa, death is traditionally perceived as the process by which a person becomes an ancestor2. With pregnancy loss, there was no opportunity for the foetus to become a person, not to talk of an ancestor; this makes it very difficult for a typical woman or couple to come to terms with what exactly has been lost and how to mourn that loss.
The mourning practices of Nigerians in particular stem from a religious perspective, due to Nigeria’s triple heritage of Christianity, Islam and Traditional religions1. There is, however, no mourning practice for a pregnancy loss. A change to this should be considered as it has been reported that unacknowledged loss and a lack of grief rituals for the loss can challenge healing after pregnancy loss3.
In Nigeria, obituaries and memorials are used to celebrate a person’s life achievements and position in society2; it is an opportunity to list out all the family members that will miss that person. After a miscarriage, there are people that are affected by the loss, people who already loved this tiny foetus and were dreaming of the day the child would be born and the changes he/she would bring to their lives. But the very nature of first trimester loss is that there is a sense that one has lost someone so loved but has nothing to show for it; there is no actual visible person to mourn.
There is a need for an accepted approach to the process of dealing with a pregnancy loss. Without this, there is the risk that the accompanying grief, which goes unacknowledged, may be too much for the woman to bear, especially if she does not have the essential social support or the empowerment that comes from education to deal with it in her own way.

REFERENCES
1. Eyetsemitan F, “Cultural interpretation of dying and death in a Non-Western society: the case of Nigeria”, Online Readings in Psychology and Culture, Unit 14, Chapter 1. ©International Association for Cross-Cultural Psychology, 2002.
2. “Death, Mourning and Ancestors”, accessed from http://www.novelguide.com/a/discover/aes_01/aes_01_00107.html on 29/04/11
3. Douglas K I, Fox J R, “Tears of blood: understating and creatively intervening in the grief of miscarriage”, Compelling Counselling Interventions: VISTAS 2009, pp89-100, ©American Counselling Association, 2009.

THE HEALTHCARE PROFESSIONAL’S ROLE (2)

Positive contacts with health care professionals have an impact on how well these women can cope after the loss (7). The woman’s ability to experience wellbeing after a miscarriage is enhanced by her receiving care from a provider that is well informed about the common human responses to miscarriage (6). Even though first trimester miscarriage is under-researched and imperfectly understood (5), there is a lot the healthcare professional can do to maximise the health of his/her patient after a loss. This may be by simply recognising the uniqueness of each loss (3), even though the medical process is the same and the occurrence of miscarriage is very common. 

In addition to this, the health care professional needs to recognise that, to his/her patient, that miscarriage is more than simply a medical event and deliberately avoid the tendency to “medicalise” (and by so doing trivialise) her loss (5). Where the health care professional does not trust in his/her ability to offer appropriate counselling, by being observant enough to identify those who may need a referral, he/she will be delivering quality healthcare.

It is a well known fact that early miscarriage is a distressing experience (2) (4), involving a major disturbance of self-identity (5). Psychological reactions to stressful events can result in physiologic effects (8); the actual miscarriage could be a straightforward process with no risk of complications that may pose a source of concern to the health care professional, but the way the woman perceives and responds to the miscarriage may be dangerous to her health. Therefore, the manner in which the health care is provided in the aftermath has the power to influence her response to the health care system (7).

Most women know little about miscarriage until they experience it and the occurrence of miscarriage is usually shrouded in secrecy (5). Those entrusted with their care should know enough to empower these women (and their partners) to successfully navigate the journey of healing in order to maximise their health. 

REFERENCES

1.      Ekwegh U. Women and miscarriage: knowledge, attitudes and needs. Printed by the Miscarriage Support and Information Centre. 2008.

2.       Beutel M, Deckhardt R, von Rad M, Weiner H. Grief and Depression after miscarriage: their separation, antecedents and course. Psychosomatic Medicine, Vol. 57(6) pp517-526, 1995.

3.       Douglas K I, Fox J R. Tears of blood: Understanding and creatively intervening in the grief of miscarriage. In Bleuer J C, Yep R K, Walz G R. (Eds) Compelling Counselling Interventions. Alexandria, VA, VISTAS: American Counselling Association, 2009.

4.       Swanson K M, Karmali Z A, Powell S, Pulvermakher F. Miscarriage effects on couples' interpersonal and sexual relationships during hte first year after loss: women's perceptions. Psychosomatic Medicine, Vol. 65, pp902-910, 2003.

5.       Frost J, Bradley H, Levitas R, Smith L, Garcia J. The loss of possibility: scientisation of death and the special case of early miscarriage. Sociology of Health and Illness, Vol. 297, pp 1003-1022, 2007.

6.       Swanson K. Effects of caring, measurement, and time on miscarriage impact and women's well-being . Nursing Research, Vol. 48 (6) pp288-298, 1999.

7.       Abboud L, Liamputtong P. When pregnancy fails: coping strategies, support networks and experiences with health care of ethnic women and their partners. Journal of Reproductive and Infant Psychology,  Vol. 23(1) pp. 3-18, 2005.