Parents are often in a state of shock and may have problems remembering and understanding information given by doctors. Indeed we have in an earlier study found that some parents claimed that they have never been spoken to by neonatologists when the conversation actually did happen and was recorded on audio cassette tapes.
Most parents in NICU are keen to know as much as possible about their baby's condition, treatment and likely outcome. Parents of babies in NICU have written cogently about the need for family centred neonatal care which recognises the parents and family as the constant in a child's life. Family centred neonatal care also empowers parents with support, respect and encouragement thus enhancing their strength and competence. Indeed, our community is becoming better informed about health. There is a ground swell of support and government backing exists for the campaign being waged by consumer lobbies and patient organisations for better health information and for greater involvement in decision making.
Patients want honest, unbiased, up to date information about their illness, its likely outcome and the risks and benefits of different interventions. Indeed 60% of malpractice suits are the result of a breakdown in communication between doctor and patient.
To promote family centred care in NICU, it is essential that we give parents the opportunity to be aware of the likely problems that their baby may face. In clinical practice a major problem for parents is not being supplied with consistent and realistic information and advice by obstetricians, midwives and neonatologists.
There are other reasons for poor understanding by parents: poor communication techniques and lack of time in consultations, contradictory messages from different members of the team, poor health of the parents, parent denial, inexperience in terminology, unwillingness to ask questions because of the perception they are using up precious time of the doctors and the lack of opportunity to review the information given.
We can promote effective communication by ensuring that whatever was said was available for parents to look at again. We have previously proposed a simplified table on the likely outcome of extremely premature babies. It is our belief that after the conversation with the neonatologist the parents should, if they so wish, be given the likely outcome of babies at different gestations.
We now have constructed a second Outcome by Gestational Age Table based on information obtained from babies less than 29 weeks gestation born in 1996 in 50 NICUs (2025 babies of the 1996 cohort, Medical Data System in North America). This table contains information on the survival rate and short term complications and treatments of the most recent cohort of extremely preterm babies. The easy-to-understand table provides in a simple format the likely nature of the complications occurring at different gestation of extreme prematurity.
Neonatologists should initially counsel parents regarding likely outcome and then ask for their consent to be provided with such a table. The neonatologist should document the date, time and duration of the conversation, the names of the parents and the people present during the conversation and the key points shared with the parents. A copy of the completed form with the table is then given to the team member in charge of the parent / baby for insertion into the patient's file. The table may thus promote consistency in the information given to parents by different members of the perinatal team. It is also important to evaluate the use of such a table by documenting the views of parents and health care professionals of such an aid and undertaking to improve the Table.
|
|
GESTATION IN WEEKS
|
|||
|
Estimates
for survivors:
|
23
|
24
|
25-26
|
27-28
|
|
total
number of babies admitted to NICU in 1996
(%
of babies who survive )
|
209
(18)
|
291
(52)
|
455
(81)
|
761
(91)
|
|
%
of survivors with breathing problems needing assisted ventilation
|
100
|
98
|
98
|
90%
|
|
Average
no. of days fully ventilated
|
59
|
40
|
30
|
15
|
|
%
of survivors needing extra oxygen for > 1 month.
|
100
|
100
|
80
|
47
|
|
Average
no. of days in hospital before going home/baby: MDS data only
|
130
|
97
|
91
|
69
|
|
significant
abnormal brain scans %
|
23
|
20
|
19
|
10
|
|
Jaundice
needing phototherapy %
|
100
|
73
|
85
|
83
|
|
Heart
condition (PDA) needing treatment %
|
31.6
|
52
|
53
|
36
|
Outcome by Gestational Age Table: the views of parents and doctors
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