Chapter Contents
Introduction 95
The relationship with parents 96
Consent to treatment 96
Life and death decision-making 97
The dying baby 97
Conflict 98
Dealing with complaints 98
Multiple complaints 99
Special situations 99
Parents of the acutely collapsed baby 99
Parents of the baby with chronic disease 99
The absent parent 99
The unsupported teenage mother 99
The parent who takes control 99
The parent with special educational needs 100
The parent who is a healthcare professional 100
The mother with threatened extreme preterm labour 100
Preserving your own health 100
Concluding thoughts 100
Introduction
Having a newborn infant in a neonatal unit is an extremely stressful experience for parents. The mother is usually suffering fatigue and physical discomfort from the delivery. Both parents are anxious. Their hopes and dreams are threatened. The future is uncertain, the path unknown. The couple face a strain on their personal and combined resources and cannot know in advance if they will be equal to the challenge.
The parent’s principal preoccupation is the establishment of a relationship with this new member of their family, but conditions are far from ideal. Instead of a 3.5-kg term infant on a postnatal ward, the centre of admiration and congratulations, they have an ill baby, often scrawny, distanced from them by a Perspex barrier. Their own feelings of guilt and helplessness are compounded by the fact that there seems to be no role for them; neonatal nurses and doctors are the caregivers; machines and tests replace parental caresses.
If families are to look back on these days and weeks with satisfaction and look forward constructively to the rest of their lives, the professional team must handle them with care. The aim of this chapter is to offer guidance to less experienced clinicians in order to facilitate the best service the circumstances will allow.
Nothing can substitute for personal experience. All junior staff should watch their seniors in action, and take the opportunity to attend counselling sessions with the parents where possible. These interactions depend to an extent on an intangible chemistry between parent and professional, and this chemistry is strongly influenced by the personalities of both. But much can be learned from observing closely how the discussions progress, noting the apposite phrase which crystallises a moment, the tactics which deflect anger, the way in which trust is reinforced.
Although the doctor and the parents may differ on many fronts – culture, religious belief, social class, life choices, education, expectations – these differences must not be permitted to create insuperable hurdles. The baby is our patient but is the parents’ child. The decisions should be the right decisions for this family at this point in their lives. The professional’s task is to share medical insight and knowledge whilst respecting parental values and beliefs, working with them to make wise choices on behalf of the child.
The relationship with parents
Initial introductions
Courtesy matters. It is polite and helpful, for example, before meeting either or both of the parents, to establish what their names are and how they prefer to be addressed. Similarly the couple need to know their boundaries, and the doctor should introduce him- or herself, and state his or her role in the team. Shaking hands with both parents at first meeting is symbolic of a future trusting relationship. The overall approach should be one of mutual respect.
Establishing trust
The doctor should always bear in mind the importance of trust. Once lost, it is very hard to regain. And whatever the status or level of experience of the professional, unfounded opinions, unrealistic predictions and false hope undermine confidence.
Before the first interview, the doctor must know any relevant family history, and the details of the pregnancy, labour and delivery. The initial meeting may well take place in the delivery room, with parents who have had only the briefest introduction to their newborn baby. At this stage it is essential to keep things simple. Even for the highly educated, this is no time to be bombarded with complex diagnoses, specialist jargon or intricate pathophysiology. The following example gives basic clear information and may be enough for the first interaction: ‘Your baby has come out very early and is very small. His lungs have not yet matured. We have connected him to a ventilator, and he is stable for now. We will tell you much more when you are able to visit the baby unit.’
Questions should be answered honestly. Where doubt exists, professionals should resist the impulse to declare that the baby will be ‘fine’. It is much better to reply, ‘He’s comfortable in his incubator at the moment. But we need to see how he progresses in the next few hours before we can be sure how things will go. We’ll keep you informed and I can promise you we won’t hide anything from you.’
Roles and responsibilities
Every neonatal unit should have a dedicated counselling room where staff can meet families without fear of interruption. In this room, the parents can be confident that they have the undivided attention of the staff and can have all their concerns addressed. Doctors should take their cue from the family as to the amount they can absorb or tolerate at a given sitting.
Neonatal units often have written protocols about who should conduct interviews. The consultant holds overall responsibility not only for the child’s care but also for the interactions with the family. Junior paediatricians should never be in the position of communicating with families beyond their level of experience, though parents appreciate informal interactions from all members of the team. Meetings of a particularly sensitive nature should be conducted by the consultant in the presence of a nurse who is looking after the baby and who has established a rapport with the parents. The junior doctor involved should be encouraged to attend for the benefit of his or her training and as he or she too has had a direct role in the baby’s care. Regardless of who is present behind closed doors, the whole team needs to know what is said and decided, in order to facilitate effective teamwork. Thereafter, full and careful documentation is essential.
A primary task for the consultant is that of assessing the full clinical picture as far as it can be known. Good counselling depends on accurate facts and knowledge of the literature. There will often be areas of uncertainty, but if there have been exhaustive efforts to find out as much as possible, the family will usually respect an honest admission from a senior member of staff of ‘I don’t know’. A statement such as ‘I am confused’ does not inspire confidence, but a frank ‘There are uncertainties ahead and we can’t be sure at this stage how things will go, but we’ll continue to discuss everything with you’ allows the parent to appreciate the evolving picture. The capacity of the parents to tolerate bad news will vary, but the truth should never be compromised. ‘Truth sometimes hurts but deceit hurts more’ ( ).
Teamwork
Managing sick infants well is a team effort. A wise doctor will listen to the parents. They have a unique investment in their child and stand in the most privileged position in relation to the baby. With their focus on one infant, they not infrequently detect subtle but important changes in their child’s condition. Staff should give proper attention to such misgivings; they are often correct.
Consent to treatment
The subject of consent is currently fraught with difficulties in the developed world. Until recent years it was assumed that babies admitted to a neonatal unit brought with them implied consent, which allowed staff to carry out any procedure on the baby without obtaining specific consent. A new tension has arisen, partly stemming from a small number of legal cases in which medical staff strayed beyond ethical boundaries to the detriment of the patient. As a result, more and more protocols are being developed demanding that written informed consent be obtained for procedures and treatments (e.g. postnatal steroids), allegedly to protect the child, the parents and the staff. Unfortunately, if genuinely informed consent is to be obtained, each interview between staff and parents must be lengthy in order to do the subject justice. Such interviews erode the time that staff can devote to the child’s care, and clearly this could have an adverse effect on prognosis. Should a lumbar puncture be delayed at 03:00 hours while parents, already exhausted, are wakened at home and asked to drive to the neonatal unit for an in depth interview, or should staff be allowed to carry out the procedure and discuss this with the couple during daylight hours?
It would be best to explain to the parents at the time of admission to the unit that every effort will be made to keep them up to date and to seek their permission for procedures, but that urgent situations might, of necessity, preclude such interactions. For a procedure that carries clear risks, consent must be obtained by the practitioner designated to carry it out and who must be qualified to do so. Great care must be taken to explain the nature of the investigation or treatment, the intended benefits and the risks attached. Consent is best obtained from the mother; the father may consent if he has parental rights. (See Ch. 6.2 regarding competence for consent.)
Each neonatal unit should have written guidelines for staff to indicate which procedures require consent to be formally documented on an official form. These are usually major undertakings, such as exchange transfusions and operative procedures including laser treatment for retinopathy of prematurity. The parents should be given a copy of the signed consent form on which the benefits and risks are clearly documented.
Consent for less invasive procedures and treatments which carry minimal risks is traditionally obtained verbally, though it is prudent to document this in the case record. Examples may include immunisations, the administration of vitamin K at birth (specifying by which route), the use of breast milk fortifier, and neonatal screening investigations such as blood sampling to identify phenylketonuria, hypothyroidism and cystic fibrosis.
Consent for research is outside the scope of this chapter, but is nonetheless an important aspect of neonatal care. Parental claims around lack of informed consent for the Continuous Negative Extrathoracic Pressure (CNEP) trial led to one of the largest inquiries so far in this field in the UK ( ). The inquiry and the subsequent report were found to be flawed ( ) and the report was later withdrawn.
It is known that parental recall of events in the newborn period is unreliable ( ). This highlights the importance of documenting informed consent for clinical trials and for invasive procedures.
Life and death decision-making
Making crucial decisions on behalf of their baby is one of the most difficult experiences parents ever face. Staff may be understandably anxious about the burden parents may carry and about the potential for guilt ( ). In reality, parents want to be given the opportunity to be active in decision-making and they do not appear to suffer adversely as a result ( ).
For this they require direct and open communication about the child’s current condition and prognosis. Information should be provided with a good measure of compassion, avoiding euphemisms, using the words ‘death’ and ‘dying’ to help validate the situation ( ). A ‘guided consensus’ is an effective way of handling the process ( ). One approach is for the parents to consider goals for care with the clinician, exploring those which are realistic and those which have little chance of success. In this way, the parents feel their voice is heard and they have a chance to evaluate their hopes against the child’s best interest ( ). It is critical that, before withdrawal of intensive care takes place, the parents as well as the staff are confident that this action is in the child’s best interest.
In most cases, consensus is reached without dissension. However, if either the parents or the staff think that intensive care should continue, then any decision to withdraw should be put on hold pending careful review. Usually, parental uncertainty arises from a failure or reluctance to comprehend fully the gravity of the situation. Continued intensive care brings clarity in the fullness of time. The child will either deteriorate or improve, and the decision is then more straightforward.
It is not the intention of this chapter to explore the ethical issues around withdrawal of neonatal intensive care. These have been developed in previous publications ( ; ).
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