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7 October 2014

Q&A: Disposal of fetal tissue after abortion

A new study published in the Journal of Family Planning and Reproductive Health Care has investigated what women who have had an elective abortion think about the current policy mandating ‘sensitive disposal’ of fetal tissue. Here two of the authors, Mandy Myers and Patricia Lohr, outline the findings.

1) Why was this study conducted?

In Britain, regulations surrounding the disposal of fetal tissue following pregnancy loss (including abortion) are managed by the Department of Health (DH), with guidance from the Human Tissue Authority (HTA) (1-3). These regulations are underscored by the concept of ‘sensitive disposal’, which involves offering women burial or cremation; and when disposal is done by the health care provider, separating fetal tissue from other clinical waste before incineration.

We wanted to find out how women undergoing abortion felt about the concept of ‘sensitive disposal’: whether it mattered to them, whether it influenced their choice of abortion method, and where the tensions might lie in discussing the disposal of fetal tissue with women having an abortion.

2) What is the policy and practice on sensitive disposal after abortion?

In 1991, following adverse publicity about the practice of sluicing and maceration of fetal tissue following abortion, the DH issued a directive prohibiting this practice and requiring instead that fetal tissue should be stored in a secure opaque container in a safe place, before being disposed of via the clinical waste stream. (1) The DH went on to recommend the adoption of ‘sensitive disposal’, which meant separating fetal tissue from other clinical waste during storage, or offering women ‘ceremonial disposal’: burial or cremation by a health care provider, or privately. (3-7)

Subsequent guidance, from professional organisations such as the Royal College of Nursing and the Institute of Cemetery and Crematorium Management, has suggested that the disposal of fetal tissue from early miscarriage and abortion as clinical waste, although sanctioned by regulation, is ‘completely unacceptable’, and that women in those circumstances instead be provided, both in verbal and written terms, with the option of burial or cremation, as they would in the circumstance of a stillborn child. (5,6)

The guidelines on ‘sensitive disposal’ apply to all fetal tissue, without distinguishing between that which is a result of pregnancy loss (miscarriage, stillbirth, or perinatal death) or elective abortion. In practice, however, anecdotal evidence suggests that the guidelines are implemented differentially. Specialist abortion service providers generally separate fetal tissue from other clinical waste and incinerate the tissue; other providers might routinely bury or cremate fetal tissue, regardless of its provenance; and some providers incinerate tissue from an unwanted pregnancy and bury or cremate tissue from a wanted pregnancy.

3) What are the problems with the current guidelines?

The fact that the guidelines do not distinguish between fetal tissue following elective abortion and that following a miscarriage, stillbirth, or perinatal death fails to take into account the potentially differing needs of women ending an unplanned or unwanted pregnancy compared to those ending a wanted pregnancy.

Furthermore, the guidelines do not take into account early medical abortion (EMA), where the expulsion of pregnancy often happens in the woman’s home, and is managed by them. EMA was a very new method in 1991, when the guidelines were published; today, it is the most common method of early abortion, accounting for 61% of all abortions under 9 weeks’ gestation in England and Wales. (8-10)

4) How was the study conducted?

We recruited women to this study from four abortion clinics operated by British Pregnancy Advisory Service (BPAS), between November 2009 and June 2010. Twenty-three women agreed to participate and individual, semi-structured interviews were conducted, with respondents encouraged to give their own accounts and meanings in relation to the main research questions. The study’s methodology is detailed in full in the Journal of Family Planning and Reproductive Health Care, here.

5) What did women understand about the disposal of fetal tissue?

At BPAS, fetal tissue is routinely collected and stored separately from other clinical waste, followed by incineration. Current BPAS literature for clients undergoing elective abortion states that the fetal tissue will be disposed of in a sensitive way, and invites women with specific wishes about disposal to discuss these with the clinic staff, so that such arrangements can be made.

Most women whom we interviewed did not know what happened to the fetal tissue after abortion. They reported not giving it any consideration at the time, because their priority was to end the pregnancy as quickly as possible:

I mean I think most people, me in particular, had so many other things going on that I just wanted to get rid of it at the time, and, sort of, without thinking too much about, “Oh what happens now?” to it.’

‘I didn’t actually know and… It sounds really mean, but I just got it over and done with.’

A few participants did wonder about how the tissue would be disposed prior to the procedure, although only two made active enquiries with the clinic staff. Two further participants reported that squeamishness had prevented them from raising the issue.

6) Was the method of disposal influential in women’s choice of abortion method?

Perhaps because many women had not thought about what would happen to the fetal tissue after the procedure, where women had a choice of abortion method, disposal was not influential in their decision. A variety of other factors such as anaesthetic options and, with regard to medical abortion, the challenge of managing the process at home, were priorities:

‘I specifically waited two more weeks to have the general anaesthetic, for the main reason that I had a little baby and I wanted it… You know, it’s just the easier option, whereas if I had to go home, and the EMA is quite a painful experience, I really didn’t want to do that around my son.’

In 2012, 190,972 pregnancies were terminated in England and Wales mainly for unintended pregnancy. (10, 12) This study suggests that women’s focus when undergoing elective abortion is on disposing of the state of being pregnant rather than disposal of the fetal tissue, and that method of disposal in general has little influence on decisions about method of abortion.

7) Did women understand how abortion providers would dispose of fetal tissue?

Most participants in our study understood disposal of fetal tissue by abortion providers to be part of the procedure. They assumed that the process would be managed within clinics based on their understanding of regulations, hygiene, and public health considerations, and trusted the professionals to manage disposal appropriately.

‘… I mean I am just assuming that it would be disposed on in a sanitary, you know, safe manner…’

After the abortion took place, some women reported curiosity about disposal, which in some cases persisted and led to dissatisfaction:

‘I didn’t really… I always… I’ve always wondered what happened to the fetus afterwards.’

‘I feel cheated because nobody sat with me and talked to me about, well, anything at all, let alone how the fetus would be disposed of.’

‘But it was really one of the points I dwelt on for quite a while… you know, I thought it was going to sit somewhere in some kind of cold room or something you know? Like this really… some kind of really impersonal place.’

8) How did women who had Early Medical Abortion describe their experience?

For women managing disposal of the fetal tissue at home or on other private premises after EMA, reliance on the professionals to dispose of the tissue appropriately was not available. This was not problematic for some:

‘… I don’t think I thought anything. I just wrapped it up, put it in a nappy bag and put it in the bin.’

But for others, a lack of knowledge of how to deal with the tissue caused anxiety:

‘… I said to my mum “Do I put it down the toilet?” because I thought will it flush, because it’s quite big? Where will it go? We just wrapped it up and put it down the toilet. We didn’t know what to do with it. You don’t know [how] to dispose of it if it comes out like that.’

Some women undergoing EMA were challenged by managing disposal at home and would have benefitted from more advice or preparation. Whereas law and guidelines regulate abortion providers’ methods of disposal, nothing has been developed for women responsible for the disposal of fetal tissue themselves.

9) How did women think about the concept of ‘sensitive disposal’?

The two participants who had heard of the term ‘sensitive disposal’ had experienced pregnancy loss. To most of the participants, the terminology suggested little of its principle or process. Following a description of ‘sensitive disposal’, several women expressed approval for the principle of separation of fetal tissue from other clinical waste, some because they viewed this as an acknowledgement of the fetus’ potential for personhood:

‘I thought everything just went in together so it has made me feel a little … not better but probably put my mind at rest a little bit knowing that it is separate, even though it’s with other women’s it is separate and it’s not just thrown into one slop bucket shall I say, with everything else ….’

‘I don’t think it’s necessary but I think, as you said, it is more sensitive and I could see that some people would like the fact that it is kept separate. I suppose I do in a way as well but I can’t explain why. But, yeah, I quite like the idea that it is kept separate. Maybe just because that thing could have become a living, I don’t know.’

Two participants disagreed, one of whom commented:

‘I wouldn’t necessarily expect you to go through a massive rigmarole of organisation, and, like you say, separate boxes, separate bags and things just seems like it’s causing you more work.’

A majority of participants considered that for a method of disposal to be appropriate, it should acknowledge that fetal tissue is different from other waste because of its past potential for development into a human being. Where disposal is the provider’s responsibility, separation from other clinical waste was thought to be sufficient acknowledgement.

10) Did women express any opinion over ceremonial burial or incineration?

The method of disposal by incineration, permitted by regulation but discouraged by guidance, was generally thought to be acceptable to the women in our study, whereas ceremonial methods were considered inappropriate by most of the women:

‘I think it’s different if you miscarry naturally or you have a stillborn baby or whatever, I think that’s totally acceptable to want a burial or whatever. But not if you’re coming into a clinic to get rid of the baby….’

‘But if I made the decision that I wanted this fetus to be buried or burnt or keep the ashes, so it would be like some kind of funeral, then in my mind it would be something like, I had a baby but it’s dead, and shall I go and visit the cemetery, or …? I would prefer not to have this thought, that there is a baby buried.’

A majority of participants approved of incineration, for some because it ensures complete destruction of the fetal tissue:

‘So it doesn’t bother me from that point of view that it is just in a container and then it is just incinerated and that is what I would imagine would happen.’

‘I would like it to be destroyed completely, so burning it sounds reasonable.’

11) How did women think information should be provided?

In general, participants believed that information about fetal tissue disposal methods should be available to women who wish to access it, but that it should not be forced upon them:

‘I think there should be that information available for people, because it’s like a big secret behind it, because we know what we’re going through, but not the end.’

‘I think women should be asked if they want to know that when they come for their appointment, you know, don’t necessarily just blurt it out and tell them but they should at least be asked if they want to know….’

‘… if somebody brings it up in conversation, it can be a lot – a bit more distressful than – or distressing than, sort of, reading it and then being able to pass it over sort of thing, put it away.’

‘I think I would have found that even more traumatic if they turned round and said, “Would you like to know how we’re disposing of it?”’

However, there was more ambivalence around the concept of women being asked to make choices about disposal. Some women found the notion of taking the fetal tissue away from the clinic for private disposal bizarre and unsettling:

‘I’m not sure I want to be offered the service of “Well, we can gift wrap it for you” almost. Because that’s what it sounds like.’

‘Do you save it in a jar or something? You have to keep it in the clinic, can’t just take it home with you.’

Some participants felt that any invitation or obligation to engage with the decision about disposal of the fetal tissue would be unwelcome:

‘If they’d said to me on that day, “Now you would have to do something with what’s-a-name”, I don’t know. I would feel then I would be pressured into … I think, yes, I think I would feel pressured into [making a decision].’

‘From an emotional side, I wouldn’t like to hear the options, because it would make things really difficult….’

As noted above, some women experienced curiosity after the abortion as to what had happened to the fetal tissue. Hence availability of information on disposal was thought to be important, but it should be the woman’s choice whether, and to what degree, they access that. We found that women were not in favour of any obligation to participate in decisions about disposal.

11) What were the limitations to this study?

This was an exploratory study, and the findings are based on a small sample of women who self-selected for participation, although the sample did include experience of both medical and surgical abortion, and across the full gestational range up to 24 weeks. A few of the women were recalling an abortion experience that had occurred several years before and their experience and perceptions may be different to those with contemporary experience. Three women worked for BPAS and this may affect, in particular, their level of knowledge about disposal, although their experience of abortion occurred prior to their employment.

12) What conclusions did you draw from this study?

Our findings suggest that current guidelines on the disposal of fetal tissue are not in line with the views of women undergoing elective abortion for an unwanted pregnancy. Further research is needed to inform policy and, in particular, to fill the two gaps in information identified: namely abortion providers’ disposal methods, and guidance for women on how to dispose of fetal tissue themselves.

Mandy Myers is BPAS Director of Nursing and Operations; Patricia Lohr BPAS Medical Director, and Naomi Pfeffer is Professor in the Department of Science and Technology Studies, University College London. The full report on the study can be accessed here:

Disposal of fetal tissue following elective abortion: what women think. By Amanda J. Myers, Patricia A. Lohr, and Naomi Pfeffer. Journal of Family Planning and Reproductive Health Care. Published online 8 September 2014. doi: 10.1136/jfprhc-2013-100849

References

1) Department of Health. Disposal of Fetal Tissue. HSG 91(19). London, UK: National Health Service Management Executive, 1991.

2) Department of Health. Sensitive Disposal of the Dead Fetus and Fetal Tissue. EL 91 (144). London: National Health Service Management Executive, 1991.

3) Human Tissue Authority. Code of Practice 5. Disposal of Human Tissue. 2014. [accessed 20 July 2014].

4) Royal College of Obstetricians and Gynaecologists. Disposal Following Pregnancy Loss before 24 Weeks Gestation (Good Practice No. 5). January 2005.  [accessed 19 May 2014].

5) Royal College of Nursing (RCN). Sensitive Disposal of All Fetal Remains: Guidance for Nurses and Midwives. London, UK: RCN, 2007.

6) Institute of Cemetery and Crematorium Management. The Sensitive Disposal of Fetal Remains. Policy and Guidance fo Burial and Cremation Authorities and Companies. 2011. [accessed 30 May 2014].

7) Scott J, Henley A, Kohner N. Pregnancy Loss and the Death of a Baby: Guidelines for Professionals (3rd edn). London, UK: Cromwell, 2007.

8) Lipp A. Challenges in abortion care for practice nurses. Pract Nurs 2008;17:326–329.

9) Royal College of Obstetricians and Gynaecologists (RCOG). The Care of Women Requesting Induced Abortion (Evidence-based Clinical Guideline No. 7). London, UK: RCOG Press, 2011.

10) Department of Health. Abortion Statistics: England and Wales:2012. London, UK: HMSO, 2013.

11) LieML, Robson SC,May CR. Experiences of abortion: a narrative review of qualitative studies. BMC Health Serv Res 2008;8:150.

12) Schunmann C, Glasier A. Measuring pregnancy intention and its relationship with contraceptive use among women undergoing therapeutic abortion. Contraception 2006;73:520–524.

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