Sands consent forms for perinatal post mortems
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Every year in the UK over 6,500 babies die just before, during, or soon after birth. More babies die during this period of their early lives than at any other stage of childhood. The number of stillbirths, in particular, has changed little in more than a decade.
A post mortem examination is the single most useful investigation in providing information about cause of death. However, perinatal post mortem rates in the UK are low.
The low post mortem rate means that many parents are left with unanswered questions about why their baby died, and about what might be done in subsequent pregnancies to avoid further deaths. It also means that there is little information on which to base measures and policies that might reduce the UK’s perinatal mortality rate. Research shows that a significant number of health professionals underestimate the value of a perinatal post mortem and so may not discuss a post mortem with parents. Many professionals may find this discussion difficult and fear that it will add to the distress of the bereaved. Additionally, research indicates that the quality of the consent process is important in increasing post mortem rates.
The forms are designed to be used when seeking post mortem consent for babies from about 12 weeks’ gestation until about two years old. However, the decision about the age range should be taken by the hospital or trust.
In consultations, Sands found that the length, detail and complexity of many current forms add to parents’ distress and makes discussion harder for consent takers. One of Sands’ aims is to provide a shorter, clearer form that guides consent takers through the discussion.
Parents should be offered written back-up information, if possible before the discussion takes place. All consent takers should be able to answer the questions that parents are likely to ask.
In Sands consultations, parents said they did not like the phrase 'baby/child'. It made the form seem bureaucratic, insensitive and uncaring, and added to their distress.
Sands found that parents found it very helpful to know that the difficult decisions they were being asked to make were not absolutely final. This reduced their anxiety and helped them focus better on their discussion.
Our code of practice requires consent takers to explain that parents can change their minds about any aspect of the post mortem at any time before it begins.
A signature on a consent form when a non-emergency procedure or treatment is refused is not necessary. If a post mortem is refused, this should be recorded in the medical notes. The medical record can be used if this information is needed for audit.
The HTA has ruled that additional specific consent is not required to keep an organ outside the body for examination to establish the cause of death if the organ will be returned to the baby’s body before the body is repaired and released from the mortuary. This is because it is part of the post mortem examination for which consent has already been given. Parents only need to be asked specifically for consent to keep an organ if it is recommended that the organ is kept for further examination or a specialist opinion beyond the time when the body will be released.
There are a few hospitals in the UK where organs are more likely to be kept after the baby’s body is release, so Sands has developed an Optional section on keeping organs which can be inserted in the standard form in those hospitals if it is necessary. See Adopting the Sands Post mortem consent form in your hospital, trust or health board for more about this.