National and ADHB Guidelines

1. The national guidelines are the Code of Health and Disability Services Consumer’s Rights (http://www.hdc.org.nz/keyword/codetop.html ). The code states:

   ‘Services may be provided to a consumer only if that consumer (the parent or guardian on NICU) makes an informed choice and gives informed consent (Right 7.1).’

   ‘Where a consumer is not competent … and no person entitled to consent on behalf of the consumer is available, the provider may provide services where (a) it is in the best interest of the consumer; and (b) reasonable steps have been taken to ascertain the views of the consumer; and (c) either, - (i) If the consumer’s views have been ascertained, … that the provider believes that the provision of services in consistent with (those views); or (ii) if the consumer’s views have not been ascertained, the views of other persons who are interested in the welfare of the consumer are taken into account. (Right 7.4)’

   Right 4 states that every consumer has the right to have services provided with reasonable care and skill. The services must comply with legal, professional, ethical, and other relevant standards. They must be provided in a manner consistent with his or her needs. They must be provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer.

2. The Crimes Act (1961) Section 151 states that everyone who has charge of any other person unable by reason of age, sickness or any other cause to provide himself with the necessities of life, is under a legal duty to supply that person with the necessities of life, and is criminally responsible for omitting without lawful excuse to perform such a duty if the death of that person is caused, or if his life is endangered or his health permanently injured, by such omission.
3. The ADHB generic guidelines on Informed Consent are available via the intranet.

Written or Signed Consent must be obtained for:

1. All surgical procedures i.e. those requiring a general anaesthetic. Use standard Hospital Agreement to Treat form (CR0111). Usually the surgeon and anaesthetist get this consent, unless they are unable to meet the parents pre-operatively.
2. Blood products e.g. red cells, platelets, plasma, granulocytes, immunoglobulin. See the Blood and Blood Products folder for further information. Use the standard hospital Agreement to Treat form (CR0111).
3. Exchange transfusion (may be combined with consent for other blood products).
   Use the standard Hospital Agreement to Treat form (CR0111).
4. Immunisation:
   For hepatitis B at birth i.e. carrier mother, use the special form (HNN2). For routine 6 week and 3 month vaccinations (DTP and hepatitis B) prescribe on the ordinary drug chart and ask the parents to countersign the prescription.
5. Autopsy:
   Use the ADHB form ‘Consent for autopsy’. Specific consent must be obtained for any organs that are to be retained. Coroner’s autopsies are not subject to consent, but provide a general explanation of the procedure. See separate ADHB guidelines.
6. Special radiological procedures requiring use of intravenous contrast e.g. IVP, CT & MR scan. Use the standard Hospital Agreement to Treat form (CR0111).
7. Guthrie card: Record on the Blue Card the parent’s consent (their signature is not required) for the blood test and to retain the blood-spot card.
8. Vitamin K: Record the parent’s consent on the Blue Card (their signature not required).
9. Any procedure or treatment that is considered to be innovative.
10. All research. Use the consent form approved by the Ethics Committee for that project.

Verbal consent and information for parents:

Neonatal intensive care often involves a prolonged stay with the parents not present for much of the time. However, we encourage parents to be involved in both the care of their baby and the decisions on treatment.

Parents must be informed of the condition of their infant and the treatment that is to be/being used. Such information sharing is usually considered to be adequate consent for ongoing intensive care.

If possible, parents should be seen before delivery and likely treatment explained. This is usually only possible for parents of some very low birth weight infants.

At delivery, the baby’s condition and the initial treatment that is necessary should be explained. Often the father accompanies the baby to NICU, and can receive further explanation and information.

For ongoing problems and treatment, the parents should be informed as the baby’s condition changes and the new treatments are introduced. Ideally this can be done before the treatment. However, on some occasions this is not possible (parents may not be readily available, the treatment may be urgent or there may not be time because the unit is busy). In such situations the doctor or nurse should inform the parents as soon as is practicable.

Some treatments and investigations can be anticipated, and discussed before they occur. Examples are ultrasounds, long lines, phototherapy, treatment of PDA etc.

Discussions with parents on treatment are done by all staff. The FLNs have an important role in keeping parents informed of ongoing treatment. Written information (pamphlets and the ‘baby book’ etc) is particularly useful. Medical staff and NS-ANPs need to ensure that parents are adequately informed on the specifics for their baby.

Discussions with parents should be recorded in the clinical record. It is not practical to record every discussion with parents, but those involving significant new or changes in treatment should be.

Occasionally, parents have very little involvement in the care of their baby on NICU and are difficult to contact. The need for ongoing changes in treatment should be discussed with such parents when they are present or are in contact.

Postnatal dexamethasone should be discussed in detail and consent obtained, because of the uncertainties surrounding its use. Such discussion should be recorded in the clinical record.

Note: Urgent treatment should never be withheld or delayed until the parents have been informed. However the treatment must be discussed with the parents afterwards.

Procedures that parents should be informed about include: