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Talking about the sensitive disposal of pregnancy remains

Caring for women and their partners experiencing pregnancy loss*

* miscarriage, ectopic or molar pregnancy

A note of caution: this film includes scenes and conversations that viewers might find upsetting, especially if they have been through pregnancy loss themselves.  You may prefer just to use the good practice guides alone.

I discussed with nurses what I could do with the baby and they were incredibly sympathetic and caring with their words, their tone and their time.  They were also knowledgeable about what I could do with it, about bringing it back to the hospital.

Good practice guide

man1Talking to patients about the disposal of pregnancy remains can be a difficult and daunting task.

Women and their partners may already be distressed.  They may have already had to make difficult decisions about how the loss is managed and are perhaps anxious about what is to come.

Now you are asking them to make choices that they probably never dreamed they would be faced with.  You may worry that whatever you say will cause them even more distress.  And you may also find the topic of disposal, and the words that describe it, very difficult, perhaps upsetting and even distasteful.

But you have the potential to make a positive difference at a difficult time. 

We asked patients and health professionals what helps and what makes things more difficult.

Women told us that they wanted a gentle introduction to the topic so they could choose when (or whether) to have information, verbally and/or in writing. They wanted sensitivity and honesty and time to think.

Health professionals told us that they sometimes found it difficult and upsetting to have these conversations, particularly when patients were already very distressed.

We look at all these points below. You may also find it useful to have a look at our films on scanning in pregnancy and on talking to patients about management of miscarriage, as these are often linked in practice.

Make sure your knowledge is up to date

You need to know exactly what your hospital/Trust offers.

I need to know what sensitive disposal means, I need to be told about what I can do.  I need to know if I can see it if I want to… to know how I will be given my baby back… to know what things I can do with it.

For sensitive disposal*:

*  This should at minimum meet the standards set out by the Human Tissue Authority in England & Wales (published in March 2015, with FAQs published in January 2017); or by the Scottish Government. The Royal College of Nursing has also published  guidance for those working in England, Wales and Northern Ireland.

disp1Women and their partners considering cremation may ask about ashes. It is helpful if you know that:

For testing:

Any tests or examination of pregnancy remains can affect timescales for burial, cremation or private arrangements. It is helpful if you know that:

 Some kind of recognition of the pregnancy would help.  It’s the being left with nothing that’s the hard bit.

For remembrance:

forgetmenot-copyIt may also be helpful to know about anything your hospital/Trust offers that can help parents mark their loss. For example:

If your hospital doesn’t offer anything, it may help to direct parents to the marking your loss section on the Miscarriage Association website.

Consider how she (or they) might be feeling – be sensitive and compassionate

Think about timing:

…of the conversation itself

It can help to have a basic sentence or two prepared – for example:

“I know this is a difficult time for you, but I need to let you know that we’ll be thinking about what to do with the remains of your baby after the surgery.  I can tell you what we would normally do and we can discuss it now, or you might prefer to think about it at another time. The information is in a leaflet too.”

management-leafletIt is equally helpful to offer information for women who will or may miscarry at home – either because of choosing conservative or medical management or while waiting for active management – for example:

“I know this is a difficult time for you, but I wonder if you want to have some information about what to do with the remains of your baby if/when you miscarry at home. We can discuss it now, or you might prefer to think about it at another time. The information is in a leaflet too.”

In either case – miscarriage in hospital or at home – their reaction will give you an idea of whether this is the right time to talk more or not. It does, of course, assume that there is written information available – and there should be:

… of the decision

All women should be given time to consider the options and information about the amount of time they have to make their decision.

We had to make a decision within a few minutes.  At the time I just ticked that I didn’t want to know – I wanted the ordeal to be over.  I look back now and feel I let my child down.

disp3Think about the language you use

Most (but not all) women think of their pregnancy as a baby. Most (but not all) prefer you to refer to it that way. Be sensitive to the words the patient (and perhaps her partner) uses: baby, pregnancy, fetus etc., and then use that same language.

Don’t make assumptions, however early the loss

Even if there is no recognisable fetus, many, if not most women (and their partners) may still want the remains of their pregnancy treated and disposed of with dignity and respect.  Some women spoke of remains being disposed of as clinical waste in front of them and found that particularly distressing.

Rationally I know it is tissue matter but emotionally it is my baby and that needs respect.

Be aware that reactions will vary and that all are valid.  Some people won’t want to know or think about disposal, some might be angry that you are talking about it at all.  Others will be shocked but still grateful that you are consulting them.

Some people might want to take the remains home without knowing how or where they will put them and this might worry you. You may want to let them know that they can get information and guidance from the Miscarriage Association.

Whatever your personal views are, keep them in check.  Above all, try not to express shock or disapproval.

I felt it was my choice to take the remains.  It was not what the surgeon would have done and her face and expression said that clearly.

Be honest

rcn-guidelinesIf you are asked a question and don’t know the answer, it’s best to say so and offer to find out.  This prevents misunderstandings and possible hurt and distress.

If you don’t like your hospital’s policy and procedures, don’t be tempted to make them sound different from the reality.

If your hospital policy includes disposal as clinical waste, or incineration on or off-site, don’t describe these as either sensitive disposal or cremation.  They aren’t.  It is better to be honest, even if it is painful.

Again, it may help to have a sentence or two prepared, for example:

“If the pregnancy is very early, we can’t always see the embryo or fetus (your baby).  In those cases, we usually dispose of the remains along with other blood and tissue.” If they ask how, say “along with other clinical waste, which is disposed of safely, usually by incineration”. 

In cases like this it might help to suggest other ways the parents can mark their loss.

Got more time?

You might find these resources helpful.

Miscarriage Association leaflet Your feelings after miscarriage.

The Royal College of Obstetricians and Gynaecologists has produced a course called Early pregnancy loss: Breaking bad news (there is a cost for non-members).

The charity SANDS also provides excellent and thorough written guidance.

The Human Tissue Authority has produced comprehensive guidance and FAQs on disposal of pregnancy remains.

The Miscarriage Association is a resource for you as well as for your patients.  If you have any questions or would like to talk anything through, please do get in touch.

Consider your needs too

disp4Talking to patients about what happens to the remains of their pregnancy can be difficult and distressing – for them, of course, but also for you. You are likely talking with someone who is already in distress about something that may increase those feelings and that can be upsetting for you too.

The following suggestions might help.

Identify the difficulties

These may include:

The context:

Particular situations that are difficult or distressing:

Identify your sources of support …

Your most likely source of support will be your peers:

You might also consider:

… and make use of them 

It’s one thing to know where you can find support. It’s another thing to do something about it. It’s worth considering that your peers may have similar concerns and might also benefit from talking about these issues together.

And finally

Talking to patients about the disposal of pregnancy remains can be a difficult and daunting task.  You may feel tempted to get the boxes ticked and run.  But you’re working in this field because you care about your patients and you want to help them through even the most difficult of situations. You may not get it right for everyone, but patients will always remember your care, kindness and compassion.

The doctor who dealt with this was excellent, her language, her knowledge and consideration of the circumstances was spot on.  She stuck to medical [aspects] but she used terms such as baby… she validated the severity of the situation and the loss, and the complicated emotions that are attached to it.

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