Paul H. Robinson and Dasha Nicholls (eds.)Critical Care for Anorexia Nervosa10.1007/978-3-319-08174-8_2

2. Management of the Really Sick Child or Adolescent with Anorexia Nervosa in Hospital: The Role of Child and Adolescent Mental Health Services

Mark Berelowitz¹ and Pippa Hugo²

(1)

Eating Disorders Service, Royal Free Hospital, London, NW3 2QG, UK

(2)

South West London and St. George’s Mental Health NHS Trust, Adolescent Eating Disorder Service, London, SW17 7DJ, UK

Mark Berelowitz (Corresponding author)

Email: m.berelowitz@nhs.net

Pippa Hugo

Email: pippa.hugo@swlstg-tr.nhs.uk

Abstract

Assessment and management of the problems of an adolescent with anorexia nervosa admitted to a paediatric ward requires substantial knowledge and skill. Challenges for the eating disorder specialist are many. Paediatric and general adolescent psychiatric staff may be unfamiliar with the condition and require support in its management. Nutritional treatment of the patient may be complicated by sabotaging behaviours, and compulsory treatment may be required. The family needs to be included and supported. Medication may be helpful but can also be risky in a severely physically compromised patient. The development of protocols to guide local practice in the different services involved can help the management of these complex problems.

Management of the adolescent with severe anorexia nervosa (AN) in hospital is a complex matter. This is not usually because of the objective severity of the child’s illness. After all, the patient is unlikely to be any more unwell than the child with acute colitis, or with septicaemia.

The difficulties arise because of the following issues:

Unless the paediatric ward is closely associated with an ED service, staff are unlikely to be familiar with young people with AN.

The local child and adolescent mental health services (CAMHS) may also be unfamiliar with the condition.

The paediatric ward staff are unlikely to be skilled at providing the safest and most useful intervention, namely, helping the patient to take nutrition orally.

Agency nurses brought in to look after the patient will also probably lack the above skill.

The patient herself may not accept the advice of the clinical staff.

The patient and her parents will be afraid.

The staff will be afraid.

There are no single measures, markers or indicators which are definitive. Blood tests and physical checks are only a guide, and the cut-offs are not absolute. Clinical judgement, which takes into account the patient’s previous, current and likely future physical and psychological state, is what is required at all times.

Service factors may not take into account the whole care pathway and can contribute to disagreements, e.g. about who should fund special nursing and who provides psychiatric liaison to paediatric wards, such that patients fall through the gaps between services.

These factors combine to produce the following challenges:

Providing clinical care which is comprehensive and compassionate.

Assessing and managing risk.

These two points matter, singly and jointly, and most especially if the admission is the first stage of the child’s treatment for their eating disorder. The patient will need to have a range of blood tests and clinical reviews. She may need intravenous fluids or nasogastric feeding (NGF). Her movement and her liberty may have to be restricted.

If all of this is not done to a good clinical standard, the patient may become more unwell. If it is not done compassionately, there is a risk that the patient may feel brutalised, and this may set her up badly for the subsequent and potentially lengthy psychological treatment. As part of this, if the clinical team is not knowledgeable about the risk factors, then their threshold for involuntary treatment may not be optimal.

It is therefore highly desirable that the clinical team be ahead of the curve in relation to risk—hence this guide. It is far better to be knowledgeable about risk and to plan in advance, than to be faced with using legal frameworks for non-consent late on Friday afternoon. If a nasogastric tube might be needed, it is better to be trying it and talking about it early on, rather than opening up the subject at a stage when the patient, her family and the clinical staff are starting to feel desperate and the stakes are very high.

One of the goals of this chapter is to try to help clinicians be prepared, avert emergencies and avoid involuntary treatment where possible. We have to be frank. This is much more likely to be achievable when there are already established good professional relationships between paediatrics and CAMHS and where both parties have at least some knowledge and experience of child and adolescent eating disorders. Conversely, where such knowledge and such relationships do not exist, it may be very difficult indeed to look after the young people with AN well. If there is no other option, the treating service would be well advised to seek consultation from those with more knowledge and expertise.

There are common settings in which young people with AN will be looked after; others are less common. The common settings are Specialist Inpatient ED unit (where Dr. Hugo works); an ED service on a paediatric ward (where Dr. Berelowitz works); a general paediatric ward with an associated CAMHS team, but without a closely linked specialist ED service; and a generic adolescent unit, with or without experience in ED, into which the patient has been admitted alongside comorbid self-harm, or psychosis. Rarely patients with AN will be admitted to adult psychiatric units, intensive units or adult medical beds.

The principles of managing the really sick child with AN are the same in each setting but become more complicated when dealing with multiple teams, each of whom often assumes that the other knows more and can and should take responsibility. The key issue then becomes who does what. This chapter seeks to clarify what CAMHS teams can and should offer in each setting and to elaborate on the psychiatric management of these ill adolescents whatever the setting. In considering the role of CAMHS in this situation, we need to consider the tasks, who is responsible for what aspects of treatment and how the different agencies can work together for a successful outcome. In addition we will consider what needs to happen beyond the ward to ensure safe practice.

The three cases illustrated in Boxes 2.1, 2.2 and 2.3 exemplify the complex challenges faced when managing the really sick patient with AN. In Case No.1 the original aim of admission was changed; there was extreme anxiety and disagreement between teams about responsibility and management and the legal aspects of the case. Because of this the patient continued to deteriorate and was not fed for 7 days, fortunately without long-term consequences. In case 2 the referral to accident and emergency (A&E) was not discussed with the paediatricians, there had not been any robust medical monitoring prior to this and no dietary plan was in place. Staff who had no experience of refeeding problems encouraged the child to eat with serious consequences. In both cases, an effective treatment plan was commenced only after a joint planning meeting was held. Case 3, whilst extremely difficult, was more effectively managed from the outset, perhaps because of prior arrangements and the presence of psychiatric and medical nurses more experienced in dealing with patients with eating disorders.

Box 2.1: Case No. 1

A 15-year-old girl was admitted to a specialist eating disorder service with AN having deteriorated in her local general adolescent unit and requiring admission to a paediatric ward. The general unit had little experience of eating disorders. The patient had a %BMI¹ of around 70 % and in the first few days managed to eat and drink her prescribed diet. However, she then began to refuse all food and fluids and thus became dehydrated, her blood pressure fell and she was hypothermic. She was transferred to the paediatric ward with the initial aim of rehydration as the ED team felt this may avoid the immediate need for NGF whilst they were in the initial phases of engaging her. After IV rehydration, she continued to refuse food despite the encouragement of the ED nurse who was with her at all times. It was agreed to commence NGF on the paediatric ward prior to transfer back to the ED unit. She was extremely resistant, and paediatric staff were unable to insert the nasogastric tube. There was disagreement between paediatric and psychiatric nursing staff as to responsibilities, e.g. who should monitor her physical observations and how should the resistant behaviours be managed. The allocated ED nurses became angry that paediatric nurses would not facilitate time for the nurse to have a break, even to go to the bathroom. The patient’s observations were therefore not always done, and the teams failed to recognise that her physical state was deteriorating. The CAMHS consultant recommended intramuscular olanzapine sedation over the telephone in order to pass the nasogastric tube, as the paediatric protocol used for procedures had not adequately sedated the patient and she had pulled the tube out. Shortly after the intramuscular sedation, the patient collapsed, requiring resuscitation.

Understandably after this episode, the paediatric team were extremely anxious about medicating the patient. The team were also anxious to continue intervention against the consent of the patient given the degree of resistance. There was confusion about who had parental responsibility as the patient was under the care of her grandparents. As this occurred on the Friday afternoon, no further attempts were made to feed the patient, and she continued to be managed on intravenous fluid with one-to-one psychiatric nursing. Ultimately the patient was not fed for a full 7 days. During this time there continued to be disagreement between the paediatric and psychiatric teams about where the patient was best placed and the legal basis under which this patient was being treated. On the Monday the consultant psychiatrist, consultant paediatrician, pharmacist and nurses from both teams met to develop a plan. A medical recommendation was made for admission under Section 2 of the Mental Health Act. Whilst this was in process, further sedation was prescribed and psychiatric nurses were brought onto the paediatric ward to help to hold the patient. NGF commenced as an emergency, and after her physical state had stabilised for 24 h, she returned to the specialist eating disorder unit and ultimately had a successful outcome.

Box 2.2: Case No. 2

The patient was a 13-year-old girl with a long-term history of AN being monitored in Tier 3 CAMHS. She was known to falsify her weight, and although her weight did not appear to have fallen, parental concern precipitated the referral to the accident and emergency unit where she was seen by the paediatricians. Prior to this no doctor had examined the patient. On admission her temperature was unrecordable, her blood pressure 70/50 and pulse rate 32. She was hypoglycaemic. She was admitted to the paediatric ward immediately. On admission there were no clear guidelines about her dietary requirements. As she was anxious about what would happen, the patient began to eat whatever she could find on the ward. She was encouraged to so do by the paediatric staff as they felt it was in her best interests. Her phosphate dropped rapidly and she developed seizures. The following day a meeting was held with the Tier 3 CAMHS consultant, paediatric consultant, consultant of the specialist ED service, nurses and dietetic staff. As there was no specialist ED bed available, a care plan was drawn up to include a feeding plan, medical monitoring and a plan to manage behaviour and to detail parental involvement. The dietician prescribed a gradually increasing refeeding diet to include NGF where necessary. The feeding was to be supervised by the paediatric nurses and parents when available. The patient was aware that if she was not able to eat, paediatric staff would be compelled to feed her via a nasogastric tube in view of the concerns about her physical state. A twice-weekly ward meeting was held with all parties to decide any changes to the plan, and this was discussed with patient and parents. Nurses from the ED service attended the ward twice a week to have time with the patient and also to attend the psychosocial ward round. The latter was used as an opportunity for supervision and to discuss concerns with nursing staff who were struggling to manage this patient. The patient remained on the ward for 4 weeks, commenced eating with her parents and was ultimately discharged home to continue her treatment once stable.

Box 2.3: Case No. 3

A 16-year-old girl was admitted to a specialist ED unit with long-term AN and a previous history of an abnormal ECG. On admission, she had a bradycardia, lowest pulse recorded 28 and prolonged QT interval. She refused to eat or drink. Attempts to restrain the patient in order to feed were met with extreme resistance, and following three doses of intramuscular lorazepam, the patient collapsed, became unresponsive and required transfer to the accident and emergency unit. In view of concern about the use of sedation in the context of an abnormal ECG, after discussion with physicians, the patient remained on the medical ward experienced in managing such patients. She was nursed in a separate cubicle under Section 3 of the Mental Health Act. Initially, two psychiatric nurses were with her at all times to ensure that she did not remove the nasogastric tube. She was placed on cardiac monitor, her bloods were monitored daily and on each occasion the nasogastric tube was removed, it was replaced. Initially, high doses of benzodiazepines were used for sedation with little ill effect, and once ECG was stable, neuroleptics were introduced to aid the sedation. The patient was resistant to any ideas of therapy, extremely unhappy about returning to the specialist ED unit as her previous experiences had been unhelpful, and an agreement was reached with the patient, parent, physicians and psychiatrists to continue to treat her on the paediatric ward. When the patient was near a healthy weight and was managing to eat, she was ultimately transferred home. Although this process was extremely difficult for her, she remained reasonably well and did not require further admissions. Throughout her stay of 3 months, a weekly meeting was held with the psychiatrist, nurses, physician, dietician, patient and parents. She was visited regularly by the CAMHS psychologist and occupational therapist but refused to engage in any therapeutic process.

2.1 What Are the Tasks?

The overarching aim of managing such patients is to provide safe nutrition and correction of nutritional and metabolic deficiencies and imbalance, so to reduce medical risk whilst at the same time developing a trusting relationship with patient and parents which will set them on the path towards ongoing psychological help.

The tasks included in this process are as follows:

Monitoring the patient’s physical state and intervening appropriately including nutritional supplementation

Prescribing appropriate diet

Supporting and containing the anxieties within the teams

Feeding the patient, either orally or through assisted feeding

Managing the challenging behaviours

Supporting the patient

Supporting the parents

Monitoring the patient’s mental state and intervening appropriately including prescription of psychotropic medication

Ensuring the patient is managed within legal and ethical boundaries

10.

Planning appropriate long-term treatment

11.

Liaison with other agencies and general practitioner

12.

Monitoring safeguarding

Beyond the direct clinical care, there is also the task of developing relationships and protocols between teams, educating and supervising staff to manage such patients and to inform healthcare commissioning. It is only through this that care can ultimately improve and serious incidents can be averted.

Whilst the specific role of managing the medical state is not within the remit of this chapter and is described elsewhere in this book, it behoves CAMHS professionals working with adolescents to develop the expertise and knowledge about the medical management, the risks and comorbidity related to AN particularly when working in specialist ED services. Many clinicians are scared by these patients and have not had training in this area despite the fact that nearly a third of female adolescent inpatients in the UK have a diagnosis of an eating disorder (O’Herlihy et al. 2001). Too often CAMHS professionals assume that their paediatric colleagues have experience in managing the physical complications. Much confusion and delay can arise when these assumptions are made.

2.2 Working Together

In an ideal world, adolescents with AN should be cared for by teams with training and expertise in managing the medical risks and providing good psychiatric care. Psychiatric services that offer “specialist eating disorder beds” (SEDB) should be able to provide safe refeeding, medical monitoring and NGF whilst having experience in managing the behavioural challenges that arise and offering appropriate therapeutic interventions. Such units will have access to paediatric advice but rarely require that the patient is managed by the paediatricians themselves. This has the advantage that the patient is managed by one team. The majority of patients can be managed safely within these settings, but there are limits and most will be unable to provide intravenous supplementation or cardiac monitoring. In these instances or more commonly when there are no SEDB, paediatric and psychiatric teams have to work together in a paediatric/medical setting. Agreed written protocols should be developed between paediatric and CAMHS services to manage these patients within which clear areas of responsibility are detailed. It is best for paediatric services to agree a clinician with responsibility for eating disorder patients, as having a different attending physician each week can confuse things, reduce containment of the patient and delay progress. Whilst the medical and dietetic teams are best placed to manage the medical and dietetic interventions, it is our view that CAMHS teams are best placed to contain high levels of anxiety, to educate and supervise staff about the psychological and behavioural aspects of care, to work with teams to develop behavioural plans to manage challenging behaviour, to work with families, to develop relationships with unmotivated patients and to work with other agencies and systems. In addition, CAMHS has experience and knowledge of using psychotropic medication and the legal frameworks for treatment.

The CAMHS team have a particular role in reminding their child health colleagues that AN is a serious psychological condition, and not one which is easily reversed. It is also a condition which evokes hostility and frustration. In this highly anxious situation, misunderstanding, splitting and unhelpful comments from senior staff (Box 2.4) are not unusual and can increase the risk of the patient deteriorating.

Box 2.4: What Not to Say

A young patient in an adolescent psychiatric unit was told by the consultant psychiatrist that she should eat because she was “upsetting her family”. In another unit, the patient was told “poor starving children in the third world would be grateful to receive the food” that she was refusing.

Systems need to be in place to ensure good lines of communication between teams and with patients and parents. Having a structure can help to contain anxiety, manage differing opinions and reduce the amount of time spent in anxious discussions.

The following structures can help to minimise confusion:

(a)

Defining the care team

Both paediatric and CAMHS teams, including both consultants, nursing staff and dietician, should meet prior to the admission or very shortly after admission to agree a treatment plan. The aim of the admission should be clarified. This plan should address factors described below and needs to be clearly documented. Where possible, parents should be involved in the planning and patient’s voice heard. Whilst it can take some time to develop the detail of the initial treatment plan, this is time well spent.

(b)

Involving parents and the patient

The details and rationale for the plan should be communicated to patient and parents. Detailed documentation is very important to avoid future confusion when the patient questions the plan. It is good practice for the patient and parents to have a copy of the plan. Information sheets for patients and families are helpful.

(c)

Reviewing the plan

This plan needs to be reviewed by the whole team regularly (e.g. once to twice weekly), and the patient and parent need to be made aware of when these reviews will take place and how they can have some input into the process, e.g. writing letters to the meeting, through discussions with key nurse.

All staff, patient and parents should know that no changes will be made to the treatment plan outside of these reviews unless in an emergency and without discussion of all parties. It can be helpful to offer patient and parents a regular time to meet a named professional outside of the review meetings to discuss concerns. Any questions can then be directed to the team.

(d)

Communicating the plan

There should be agreement as to how the plan will be communicated to staff at each shift and to any agency staff.

(e)

Providing information

Advice sheets can be useful to staff unfamiliar with dealing with adolescents with AN, e.g. “how to help a young person eat” and “how to manage challenging behaviour”.

2.3 Providing a Safe Nursing Environment and Containing Team Anxiety

Whilst the majority of paediatric nurses find themselves caring for adolescents with mental health problems on general paediatric wards, registered nurses who care for these young people do not feel prepared (Buckley 2010; Watson 2006). A significant number of these patients will have AN (Buckley 2010). Surveys indicate that general nurses do not feel equipped to deal with patients with psychiatric illnesses, feel they should be treated separately from other patients and have little knowledge of CAMHS provision (Buckley 2010; Watson 2006). This can lead to reluctance to care for this patient group and a strong wish to move them elsewhere. Much time can be spent on debating this rather than dealing with the problems presented by the patient.

A successful therapeutic relationship between nurse and patient requires the development of rapport and trust (Mc Queen 2000). Patients with AN present unique challenges as they reject help and find it difficult to trust staff. In turn, nurses find their trust and caring intentions are eroded and they can be left feeling manipulated and betrayed. Nurses report that core values that include “trust, honesty and being non-judgemental” are lost and replaced by emotional turmoil. Within this, it is difficult for nurses to manage their feelings of anger, rejection and inadequacy, and without adequate education and supervision, this can be directed at the patient. Nurses describe getting into unhelpful battles for control, finding it hard to be compassionate and blaming the patient (Ramjan 2004). This can feel even more complicated for nurses when dealing with younger patients, who by virtue of their age are more dependent. These challenges can result in splits amongst nurses, some of whom become “special” nurses in whom the patient appears to confide and others who are “bad” nurses (Gairdner 2002). This can lead to inconsistent and unhelpful care. Similar processes can be recognised in parents.

Nursing staff experienced in dealing with eating disorders are aware of these dynamics and with good supervision can learn to manage their feelings to enable them to develop a working relationship with their patient. Many services with SEDB have facilitated staff groups to support staff. This is a lot more difficult on the paediatric ward. Often, inexperienced mental health nurses who have little knowledge of eating disorders are brought in to “special” the patient with limited benefit.

Services need to consider who is best to nurse these patients given the local environment. It may be that paediatric nurses who know the ward are better to take on this task. Where mental health workers with eating disorder experience are available, this is of course an advantage but there needs to be clarity about responsibilities. Where possible, it is important to have consistent staff who can develop a relationship and knowledge of the patient and the treatment plan. Paediatric staff should continue to hold responsibility for the medical monitoring as deterioration in the patient’s physical state may be missed by nurses inexperienced in medical care. The nurse in charge of the ward should ensure that the nurse observing the patient is able to take breaks and is not abandoned. Importantly, they hold the responsibility for ensuring that an adequate handover occurs.

Nursing surveys have reported that regular education for staff in paediatric settings can help nurses learn to manage these patients and their feelings about them (Watson 2006; King and Turner 2000) It is imperative that the nursing team are involved in the development and review of the treatment plan (including the agency nurses) to ensure that their views and observations are considered, to reduce miscommunication and for them to feel valued in the process. This in itself can reduce unhelpful nursing care.

It can be very helpful to draw up a standard care plan that can be used when admitting these patients. The care plan can include advice on how to respond to challenging behaviour, e.g. food refusal and exercise. It is rare that nurses with eating disorder experience are available to nurse these patients at all times, but it may be possible for an ED nurse to visit the ward regularly to offer supervision to both paediatric and psychiatric nursing staff. The psychosocial ward round is another forum where difficulties with the patient can be discussed. Over time, as relationships develop, staff may be able to trust one another to begin to share their personal feelings about the care they are giving.

2.4 Managing on the Ward

2.4.1 Feeding the Patient

The patient has AN. All nutrition is likely to be highly challenging. She is also likely to ask good questions and to be anxious if she does not receive sensible answers. It is therefore essential for the clinical team to make a well-informed decision about whether the primary task is rehydration and correction of electrolyte disturbance and whether that is to be followed by weight maintenance or weight gain. If weight gain is required, a sensible decision needs to be made about how much weight gain and why. If clinicians are not clear about this, not only will the direct clinical work be difficult, but also there may be difficulties in deciding the basis for moving to using legal frameworks if consent is refused.

By this we mean that it is fine to agree a target with the patient and her family, such as reaching 40 kg or achieving 5 kg weight gain. However, the biological or medical significance of these targets should not be overestimated or overvalued. Remember that weight and fluid restoration are not the only things that matter. Attending to mental state (mood, subjective suffering, self-harm) and family and social relationships are also important.

Oral Nutrition

All patients will be highly anxious and attempt to negotiate the diet/feed. Where possible, it is preferable to encourage oral diet rather than via nasogastric tube as this establishes an expectation of normal eating from the outset, thus averting the development of a dependence on NGF which can become problematic at a later date. Studies have found that with adequate mealtime support, the need for NGF is reduced (Couturier and Mahmood 2009) However, in their anxiety to pacify the patient, staff can lose a lot of valuable time in repeated negotiations around the diet before getting on with the job. In our experience, a clearly detailed, prescribed, predictable diet is imperative. Too much choice can add to feelings of guilt and responsibility and exacerbate uncertainty and anxiety (in staff, patients and parents). Parental knowledge of previous likes and dislikes can be helpful in planning the diet. To help staff in managing the patient, the dietary prescription must include detailed instructions regarding portion size, e.g. “one portion evening meal” is not sufficient. However, we would shy away from becoming detailed to the extent of weighing food as this can add to staff burden on a busy ward and can ultimately be unhelpful. If the patient is unable to manage the meal, then a supplement drink can be offered.

It must be clear who has the responsibility for supervising and supporting mealtimes. An assessment must be made as to whether parents themselves can play a part in this. In the long term, parents will have to assume some responsibility for ongoing management of their children’s eating. This may be an opportunity to begin the process of helping them learn to do this in the knowledge that their child is in a safe environment, they can share the responsibility and have support to manage the distress and conflict. Parents however may be too overwhelmed and distressed themselves at this stage to manage this effectively when the child is really sick. Their involvement may then be better delayed. All who are involved in the meals need advice as to how to manage the child’s opposition. Firm consistent encouragement is needed whilst not being tempted to waiver from the prescribed plan in the face of resistance. The patient needs to know what will happen if he or she is unable to eat. Repeated statements like “You know you need to have this as it is on your plan” and “now place the next mouthful on your fork and into your mouth” can be used. In their frustration and helplessness, staff need to avoid becoming angry or threatening. Staff require support to take their difficulties back to the team rather than feel they are solely responsible.

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