Issue 147 The challenges of eating disorder recovery

COVER STORY

THE CHALLENGES OF EATING DISORDER RECOVERY This article depicts the roles and responsibilities of a specialist dietitian in eating disorders (ED), highlighting the recovery stages in an inpatient setting and presenting an overview of the relationship between the dietitian, patient and the patient’s family/carers.

Dietitians have a multifaceted role in the treatment of an ED, with nutritional intervention being an essential part of the treatment for patients. Any job in mental health can be very demanding and requires high resilience, but a specialist dietitian in ED can face even more challenges, due to the complex needs and confrontational behaviours of this patient group.

In most ED cases, other disorders can co-occur, such as depression, anxiety, substance/alcohol abuse, self-harming, borderline personality disorder and obsessive-compulsive disorder.

Working with ED patients requires a solid comprehensive level of knowledge, and if the main responsibility of the dietitian is to focus on food-related problems, then sometimes the job requires a skill mix.

Enhanced communication, counselling and motivational interviewing skills are all important. The job can be personally and professionally exhausting. To avoid this happening, the dietitian should have a very clear set of boundaries in place when working with a patient who is suffering with an ED.1 Boundaries are exceptionally important tools implemented during the patient’s treatment.

Oana Oancea Registered Dietitian, Priory Hospital

MAXIMISE COMMUNICATION

A significant part of the treatment will involve negotiation, as communication plays a very important role. It will have a huge impact on an inpatient’s day-to-day life. Sometimes, the way you are delivering a message can make all the difference as to whether the patient becomes distressed, selfharms, has suicidal thoughts, and/ or rising anxiety levels.2 Being part of a multidisciplinary team (MDT), the dietitian should be aware that if communication fails with the patient, it can have an impact on the whole ward. Some of the patients will express their frustration, anxiety, or anger on the other staff members and very often on other patients. I have found that the biggest catalyst to affect the whole dynamic of the ward can be the weight-gain meal plan mentioned later in this article.

ED can make a patient become manipulative, sneaky and secretive, causing rifts in the MDT. In some cases, it may be useful for the dietitian to be accompanied by a chaperone, someone who the patient feels close to and comfortable with.3 It’s very important that scheduled one-to-one sessions are kept and the times of these

Oana has a keen interest and specialises in eating disorder dietetics.

She currently leads CAMHS, Addiction and Eating Disorder Unit in Priory Hospital, Chelmsford, where she has been for two years.

REFERENCES Please visit the Subscriber zone at NHDmag.com

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COVER STORY respected. If the dietitian is late for whatever reason, the patient will feel “unworthy” and anxieties will build up.

“MY DIETITIAN SHOULD BE MY ROLE MODEL”

Despite all the obstacles within dietitian-patient communication, patients have a clear image of how they expect the dietitian to behave. Feedback questionnaires show that ED patients are most often expecting the professional to have the following characteristics: open-minded, trustworthy, a good listener and assertive. From the same questionnaire, I found out how important it is for the dietitian to look healthy. When I raised this aspect with my patients, the most common answer was along the lines of: “I can’t trust someone’s advice if he/she doesn’t look after his/her own body. My dietitian should be my role model.”

STAGES OF TREATMENT IN INPATIENT SETTINGS

Admission • Each patient admitted to the ward follows a 7-Days Meal Plan Protocol (three meals and three snacks spread throughout the day).

The 7-Days Protocol can start from 500kcal up to 1800Kcal depending on how high the risk of refeeding syndrome is. The amount of calories will be decided after a rigorous assessment involving the whole team.

• Weight and the bloods will be checked every day early in the morning for the first seven days.

• At this stage, negotiation will be minimal and one-to-one sessions are scheduled daily for the first week.

• The amount of calories and the gradual increase for the seven days will be made known to the patient in the first session. No further discussion will be held about calories until the patient is discharged.

• Each patient will be seated for the beginning at Table One, which is for patients who are not able to finish their meals in time and who are deeply set in their ED behaviours.

• Until the patient reaches the next stage of treatment, I use the one-to-one sessions to build trust and to focus more on the patient’s motivation, to explore feelings around hunger/fullness and find out about metabolism. We analyse together the irrational thinking about food and the 12

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patient’s looks. During the first week of admission, I try to minimise the typical behaviours derived from the illness they suffer from.

Restoration Stage The topics I address in the Restoration Stage are: • meal plan structure; • teaching the patient to communicate with his/her body again; • showing the patient how to trust his/her primary instincts again; • supporting the patient to free himself/herself from anorexic thoughts derived from his/her illness; • working with facts and strongly advising the patient to keep journals.

Patients can keep journals about: • activity level on the ward or on the hospital’s grounds; • feelings related to any activity which involves food (meals, groups, meals supervision, etc); • reflective processes and weekly nutritional goals and challenges.

Pre-maintenance Stage The word which can best describe my work at this stage is ‘exposure’.

I hold cooking groups, fear-food activities, snack and lunch out of the hospital during one-to-one sessions or in groups of up to four patients, and takeaway activities. The aim of the groups is to undo the false beliefs caused by anorexia in order for patients to regain their confidence and to develop the important social skills needed for them to integrate back into the world after discharge.

In addition, the groups help patients to stop the obsessive caloric counting, the monitoring or precise measuring of foods, or the obsessive labelling checking. Patients will learn during this stage how to portion food items. The scales will be eliminated gradually, which is part of the patient’s goals.

The social eating activities make them aware of the benefits of social life and the importance of independence. They aim to help minimalise the feeling of being judged or

COVER STORY

The purpose of guidance is to allow the patient to normalise their eating patterns and not to strictly follow a meal plan.

watched, and to help patients feel comfortable around other people. The fear-food activity is combined with mindful eating and each fear food, although not part of the current meal plan, will be eaten before the weighing day to show to the patient that it will not cause a massive fluctuation in his/her weight. Every week we conquer a new food item, one by one, until the patient is ready to integrate it in his/ her current meal plan. It is important that the fear food is associated with a nice memory from the past and for the patient to reconnect with this warm feeling in the present. Most of the patients will describe this experience as liberating. They feel proud and a whole new world opens up before them.

Cooking groups involve planning and shopping for ingredients. The patients are in charge of choosing recipes as long as they respect the Eatwell Guide model. Another challenge is to advise patients to taste the food while cooking. This helps them rediscover savoury food, to make it much nicer through adding herbs and spices, and adjust the overall taste to their recently rediscovered likeness.

Patients reported that the exposure work gives them a feeling of accomplishment. Their anxiety reduced gradually and they are able to rebuild their relationship with the family in the kitchen. During group sessions, patients are able to share tips and experiences, encourage each other, find common tastes and preferences and (re)define their personal taste.

The exposure work during the final stages offers the patients the possibility to take some control back (choosing the recipes, the restaurant, the takeaway food, etc). Patients also

report before discharge that the groups boost their confidence and help them develop a more flexible approach towards food.

Maintenance Stage The purpose of guidance is to allow the patient to normalise their eating patterns and not to strictly follow a meal plan. If they miss an item, they can make up for this later in the day, or they can choose to replace it with an alternative.

During this stage, the patient is taking ownership over what they do or do not eat.

Thus, if they choose not to have an item and then not to have it later on, the risk they are taking is that their weight is likely to drop. If their weight drops below their range, they will need to go back onto a weight-gain meal plan. It is helpful to notice what they are doing, but this is the stage when staff take a step back to allow the patient to make their own decisions around their eating.

During this stage too, the patient no longer requires supervision or protocol in relation to supplements.

FAMILY – A GEMSTONE FOR THE RECOVERY

Family is one of the most important and powerful tools in the journey of recovery. Feedback questionnaires show that 65% of our patients would like to recover for their family, but not for themselves. Many patients are very reluctant to let the family get involved in their recovery, especially at the start of the treatment.4 They feel controlled and are scared that the professionals may find out from the family whether or not they followed the treatment while on home leave.

In 40% of cases, patients newly admitted to our Springfield ward opt for ‘no sharing www.NHDmag.com August/September 2019 - Issue 147

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COVER STORY Table 1: Family trigger statements and positive alternatives to encourage Family trigger statement

Patient interpretation

Alternative positive statement

“Just eat/stop”

It’s that simple

“I understand, it is not as easy as it sounds”

“You are not even trying”

I might as will give up

“Keep working on it, ’you’ve got this”

“You look healthy/well/better”

I am fat/I am no longer ill

“You look happier”

“I can’t believe how much you are eating/your eating has changed”

I’m fat, I’m greedy, I’m normal

“It’s so nice to see your progress”

“Let’s go for a walk”

They think I ate too much

(Don’t get involved)

“This is unfair on your family”

They think it’s all my fault

“It must be hard for you and your family”

How does it taste?

Guilt

(Don’t question this subject)

information’. This is a clear barrier between professionals and family, but a comfortable blanket for their condition. Fortunately, in nearly 70% of cases, patients will change their mind through the admission stage and they will let the professionals start to work with their families.

Both family and patient need to learn to balance control, with family members learning to help the patient build confidence in a familiar environment and the patient working towards regaining trust from the family. It is also vital during this process that the dietitian provides all the patient’s family members with a solid education in nutrition.

CLINICAL OBSERVATIONS

The family can be a trigger for the patients, with patients reporting that a family member’s comments can trigger the illness. A questionnaire revealed the most common comments that can affect the patients include: “It’s just food”, “Stop it”, “You will feel better after”, “You will look better if you are eating”, and repetitive suggestions such as: “Try this/that”, or “The dietitian said…” (see Table 1). Using negative body language also has a significant impact on the patient.

Quite often I observe fissures in the dynamic of the family when it comes to food. One of the factors that can lead to a lack of support from the family towards a patient, is a rigid work schedule. They eat rarely together and they are unable to provide supervision to the patient. The meals they do eat together most often are those during the weekend. Sometimes, the family are not able to offer the full support to the patient because they need to look after other children.

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Parents too, can’t always be good role models all of the time (eg, skipping meals or snacks themselves; following weight loss diets at the same time the patient is recovering; combining eating with other unhealthy activities). It is, therefore, very important to understand the whole family dynamic and to take into account each family member’s lifestyle and habits. I strongly advise that at least one of the parents is more flexible with their job when the patient is going on home leave.

Mounting evidence from family studies point to increased rates of ED where dysfunctional family systems co-exist. Whilst numerous studies have focused on maternal influences on the development of ED, paternal influences have received far less attention.

CONTINUING CARE

Relapse is common amongst recovered anorexia nervosa patients. Studies on relapse prevention with an average follow-up period of 18 months found relapse rates between 35% and 41%. In leading guidelines, there is general consensus that relapse prevention in patients treated for anorexia, is a matter of essence. However, lack of methodological support hinders the practical implementation of relapse prevention strategies in clinical practice.5 Not all the community teams have the necessary resources to be able to monitor and support the patient when discharged from hospital. The lack of resources (eg, staff, training, large caseloads) can lead to a full relapse of the patient within two months. I am left to wonder how we can provide a continuation of care and maintain a patient’s progress once they are back in the community.