An article by Nicola Miller-Clendon author of Life after baby loss:
A guide to pregnancy and infant loss and subsequent pregnancy in New Zealand.
Health professionals are often the bearers of bad news. Even when a woman suspects something has gone wrong with her pregnancy she will often seek confirmation from a doctor or midwife. The way these women are treated will have an impact not only on their recovery and their families but also on any subsequent pregnancies.
Events immediately surrounding their loss are often the memories that remain longest for bereaved parents.
If they are treated sympathetically, these memories can provide comfort, peace and resolution. Conversely, insensitive treatment and comments can leave them hurt and angry and these feelings are often difficult to resolve, making it hard or impossible to come to terms with what has happened.
Delivering bad news;
Because in maternity care, joy tends to outweigh tragedy, bad news can be particularly difficult to deliver.
Bad news needs to be given in short, unambiguous sentences, piece by piece so that it is easier to understand. Even the most straightforward information - she's dead; she has an abnormality - takes time to understand. You may think, for example, that saying 'I can't find the heartbeat' is unambiguous - it is not, the woman will be thinking 'Well, find someone who can'. There is no ambiguity in 'I'm so sorry, there is no heartbeat'.
The initial delivery of bad news is usually a solitary event, involving the woman, possibly her partner, and you. You cannot make the news any better but you can make the receiving of the news easier by trying to show compassion and sympathy.
When conveying bad news;
If the death is discovered during a scan or is being confirmed by scan, provide the information in a sensitive manner. How the parents are told can be just as upsetting as the news itself. Women want you to be sympathetic; they want to hear; 'I'm so sorry but …'
- Make sure it is done in a private location and that there will be no interruptions.
- Don't attempt to appear emotionless.
- Make contact - touch her hand or arm.
- Talk about 'the baby' not - the foetus'.
- Ask if she has any questions. Assure her she will also have the opportunity to have any future questions she may have answered as well.
- If it is not you, ask her to contact her own LMC as the scan results will be passed on as soon as possible.
- Ask if she would like you to contact somebody if she has no support person with her as she may be in shock and have driven to her appointment alone.
- Refer her to local support groups and give her written information if available (Miscarriage Support Auckland Inc. supply pamphlets for miscarriage patients on request through-out NZ or they can be downloaded from this site). She may not be taking anything in at the time and written information can be read later.
- LMC - give her breathing space; tell her what her options are and to think about them and then you can make a plan together the following day. This also allows her to find out further information and think about any other questions she might have (see 'D&C & treatment at hospital'). Follow up on any decisions that need to be made.
- Follow up on your patient. It may be a visit, a call or a card. Following up does not simply mean a physical check in four weeks time.
- Remember to also take care of your own needs and those of any other involved staff or hospital personnel. Have systems set up to enable you to debrief.
- Book any follow-up appointments for a time when there will be no pregnant women in the waiting room.
The reactions of health professionals after a loss and the care they provide, is often determined by the gestation that the loss occurred at and whether or not the loss was voluntary. However, this is not the woman's experience of the event. Why should the loss of her hopes and dreams cause any less grief for a woman who loses her baby earlier than those of a woman who loses her baby at term? We don't just make plans for a pregnancy; we make plans for life.
Research has shown that while we often know how to react to stillbirth and neonatal death, which shock us and often force us to face our own feelings of failure or inadequacy, miscarriage is often seen as 'something that just happens'.
Perhaps for this reason, it is harder to know how to react to a miscarriage. It is also made harder because women's own reactions vary widely. Miscarriage is often a hidden experience too. For some people recognising the experience of miscarriage as the loss of a baby, challenges their acceptance of abortion.
Our own attitudes can lead to a lack of appreciation of significance of the pregnancy loss to the woman. Regardless of their own perception of their miscarriage, women are helped by you acknowledging the reality of the loss and providing them with information and, where possible, explanations.
When women talk about the shortcomings in their care they usually talk about;
- The attitudes of the individual staff reflecting the care that they didn't provide.
- Being placed in a situation where they were exposed to mothers with their new babies
- Inappropriate comments (either flippant or based on personal moral or religious beliefs) and insensitive use of language, ABORTION, TERMINATION OF PREGNANCY, THE PRODUCTS.
- A lack of information or explanation of what has happened or is going to happen especially if they have not already miscarried and are left with the fear of doing so at home e.g. they were not told about the amount of blood-loss they may experience or if/when it may become life threatening.
- A denial of the meaning of the event for them by minimising or invalidating their experience (it is the strength of the bond with their baby not the pregnancy length that determines the intensity of their grief)
- Being rushed and not allowed the time to absorb the shock of what has happened.
- A lack of follow-up care and information.
When a family lose their baby, at whatever gestation, they have certain rights. It is very easy for health professionals to rob them of these rights without even realising it. Facial expressions, the tone of voice or the words used can easily make vulnerable parents feel that they are making the wrong choice. By being aware of these rights, you can help make a terrible situation a little less terrible. Some of these rights are specific to a certain group of health professionals (e.g. a hospital situation) and others apply to all who come in contact with the bereaved family.
It is their right;
- To be able to see, hold and touch their baby at any time before and/or after death when the baby is of sufficient gestation to be recognisable. Even parents who do not wish to hold their baby should be given the opportunity to have him or her in the room with them. He or she can be wrapped and placed in a basket so that they can hold him/her if and when they choose. Many parents have found it really helpful to see and hold their baby. (A July 2002, study by 'The Lancet', reporting that this practice actually causes more harm than good, by higher rates of depression and anxiety, lead to an outcry from women worldwide who said that they would not have given up this experience for the world.)
- Allow parents the opportunity to take photographs of their baby themselves (when feasible) as it maybe the only chance they will have unless they are taking the baby with them. If staff use the hospital camera, reassure the parents that photos will still be available if they choose not to take them then.
- To spend as long a time alone as they want with their baby. Let them know how to contact you if they need you. They may not have another private chance to hold their baby; do not rob them of this. It's hard to relax and talk or sing to your dead baby with a stranger hanging around. When they are ready, the procedure can then be followed that the family have decided on. Tell them once when you are ready but do not keep telling them. This will make them feel their time is up.
- If the miscarriage is early in the 1st trimester, the baby maybe too small to recognise or not have formed at all. Families still have the right to be offered the remains passed or removed by a D&C to dispose of in their own way. If the family are unable to make an immediate decision, the remains should be saved for possible collection at a later time (see 'Burial Options' & 'Saying Goodbye').
- To have access to their families to be together to support each other. They should be allowed to visit as required, not just within visiting hours. Arrange access with security.
- To be able to observe their cultural and religious practices in their own way. Don't impose your perceptions of their culture on them but do facilitate practices
- To be given as many mementoes as possible.
- Use a lead-in to discussing any fears and worries parents might have such as, 'Have you thought about...?'
- To be informed of the grieving process.
- To have a meeting with a grief counsellor or social worker as it may help.
- To have follow up. Better for several people to refer than none at all
- To be asked what information they feel they need in a subsequent pregnancy.
- A package should be provided which includes local contacts, support groups and relevant information including legal requirements (see New Zealand 'Burial Options')
- To be able to request a post-mortem or pathology exam where possible if they wish. Usually this is offered following a stillbirth, neonatal death or recurrent miscarriages, but many parents want this after a first or second miscarriage. As this is not common practice in New Zealand, much of the information they know about comes from the overseas.
- Be prepared and it will make things easier all round.
- If you have no idea what to say, tell them.
- Let them know you do care that their baby has died.
- Ask for advice.
- Use your social workers where available.
- Read. More information is available in 'Life after baby loss' by Nicola Miller-Clendon (Tandem Press). It is available in all good NZ bookstores and libraries. (See our 'Resource' section too.)
- They are still parents and deserve to be treated as such.
- Be familiar with the protocols- read them with compassion.
- If you are in a hospital situation, make sure your unit has a 'baby-loss' kit with camera, stamp pad, appropriate sized bedding and possibly a sign to put on the door of women who have lost a baby.
- Utilise local support groups - they are always ready to help.