When guiding parents through withdrawal of care in the neonatal period, the medical team should follow best-practice protocols, developed in response to parent experience studies.
Worldwide, approximately four million babies per year die in the neonatal period.1 In Australia and New Zealand, most of those deaths occur in low birthweight and premature infants, often following withdrawal of intensive care support. A number of studies have explored parent experience around the death of their baby. These studies consistently report that parents want the following:
- clear consistent and accurate information about their baby’s condition, however bad the news;
- to be involved in decisions made about their child’s care and have their decisions respected by medical staff;
- information regarding what will actually happen when intensive care support is withdrawn; and
- follow up after the event to identify concerns and revisit explanations.1
Providing parents with clear and consistent information
Inconsistency of information is extremely distressing to families as they struggle to determine who and what to believe. It is of paramount importance, therefore, that before any discussions with the family are commenced, the care team meets to ensure that agreement has been reached regarding the prognosis and appropriate management of the baby and that any disagreements are reconciled.
A meeting with the parents should be scheduled for a time when all relevant family members can be present and the care team can devote uninterrupted time to talk with them at some length. It is often appropriate that multiple meetings occur and parents should be given the opportunity to request to speak to the care team at any time.
Parents are often confused by the terminology that medical professionals use to communicate between themselves. It is important to explain the clinical condition of their child and the information available from test results in clear, non-medical language. They must be given the opportunity to ask questions and medical professionals must be prepared to explain things in different terms. All communication must be appropriate both culturally and to the level of education of the family. The value of a social worker skilled in ‘seeing things from the parents’ perspective’ and who can ask questions when the parents might feel intimidated cannot be underestimated.
In his article in Pediatric Clinics of North America, Munson describes some components of good communication in this setting. He explains how clinicians can express empathy with phrases such as ‘I wish the test results were different’. Moreover, focusing on the concept of preventing ongoing suffering as an act of parental love can help to establish a connection with the family. Such attitudes contribute to an understanding that family and child are valued and respected. If the baby has been given a name, then this should be used in all conversations and parents often feel better able to make decisions about their child if they can hold them at this time. Not talking can be one of the most uncomfortable areas of communicating, but parents need time to process information.
It is often only when they are allowed some space to do this that they will bring to the conversation their deepest fears.2 Mothers, in particular, will often ask whether they could have done something to prevent the situation from arising and it is important to reassure them that they are not to blame.
While it may seem obvious, it needs to be clearly stated that shared decision-making requires a two-way conversation, allowing the parents to express their hopes and thoughts around their baby’s care and management as well as the treating medical team.
Interviews with parents several months after their baby has died have shown that while most want to be involved in the decision to transition from active treatment to palliative care of their baby3, many do not want to take the final decision alone. For some parents, however, the removal of perhaps one of the few decisions that they can make for their baby is devastating. It is in this context that shared decision-making must be addressed.
Planning a positive experience of death
For some parents it is important that other family members are present at the time of withdrawal or that they should have met the baby prior to them dying and, if the medical situation allows, timing of withdrawal should be planned around these requests. It may also be appropriate to discuss whether the family would value any spiritual or cultural support at this time and to help them to organise this.
The number of caregivers at the time of withdrawal of intensive care and ongoing support of the baby should be minimised and new caregivers should not be introduced at this time, if possible.
A survey carried out in three neonatal centres in Scotland regarding parents’ perceptions of withdrawal of intensive care revealed that a key issue for parents was the length of time after withdrawal of respiratory support that the baby remained alive (between three and 36 hours). Many did not feel that they had been prepared for this.4 This is doubly sad as not only do parents feel that they have perhaps made a wrong decision in agreeing to the withdrawal of intensive care support, but also they do not have the guidance and opportunity to make this a positive time with their baby.
Often, in order to attempt to maintain stability in the infant, contact between infant and parents has been minimal by the time a decision is made to withdraw intensive care support. This period is an important time for parents and family members to hold their baby and perhaps plan to bath and dress them.
After intensive care support is withdrawn (and usually this is ventilator support) the baby may gasp, breathe intermittently or with apparent difficulty for a variable period and may make movements. Parents need to be guided as to when these are reflex actions and when they may mean that the baby is uncomfortable or for another reason requires treatment. Withdrawal of intensive care support does not mean withdrawal of care entirely and appropriate discussion should be had with the parents as to what interventions will be continued.
However short the life of the baby, they should be recognised as a person and their memory respected. A memory box may be planned to include photographs, footprints and handprints as well as locks of hair, umbilical cord clamps, identity bracelets and cot cards.
Follow-up and after care
Families can feel abandoned once they return home after their baby has died. Many express that they consider the care-giving team to be part of their family and the people who knew their baby best and exclusion from them compounds their loss. Once home, they may revisit questions about their baby’s illness and condition and wish to discuss issues further. It is important that follow-up is arranged and that parents are given means to contact the appropriate professionals. This may include the lead consultant to review medical facts, social workers to access appropriate bereavement supports and lactation support to suppress ongoing lactation if required. Some families may wish to visit the unit again to express thanks to the nursing staff and to talk about their baby as a real person who was cherished and cared for. Community care providers, such as general practitioners, must be informed as soon as possible of the death of a baby so that they can also assist in supporting the family.
Many hospitals hold periodic memorial services and parents should also be assisted to organise funeral services.
Training in palliative care of the neonate
Despite the importance of these experiences for parents, the majority of neonatal nurses and doctors do not undergo any formal training in this area. In a web-based survey of neonatal trainees in the United States, 93 per cent expressed that they would like further training in the form of both role-play scenarios and feedback from supervisors after taking the lead in family meetings.5
This article provides a framework to assist professionals guiding parents through the stressful period around the death of their baby. Those who can best teach us to do this well, however, are the families for whom we are privileged to care and we must not be afraid to listen.
- Eden LM, Callister LC. Parent involvement in end-of-life care and decision making in the newborn intensive care unit: an integrative review. The Journal of Perinatal Education. 2010;19(1):29.
- Munson D. Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units. Pediatric Clinics of North America. 2007;54(5):773–85.
- McHaffie HE, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents’ perspective. European Journal of Pediatrics. 2001;160(6):339–44.
- Brosig C, Pierucci R, Kupst M, Leuthner S. Infant end-of-life care: the parents’ perspective. Journal of Perinatology. 2007;27(8):510–6.
- Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist training to guide family decision making for critically ill infants. Archives of Pediatrics and Adolescent Medicine. 2009;163(9):783.