Collaborative Care in Eating Disorders and Non-Negotiables: Why do we need them and how do they work?
Imagine these scenarios…
You’ve been seeing a patient with severe anorexia nervosa for a number of weeks in therapy. Together, you have begun addressing and thinking about the core features that have contributed to the eating disorders onset and maintenance. But recently the patient’s weight has begun to drop, and she has not been seen by her GP. She says that she has fainted several times in the last week. You raise the issue of her going into hospital, but she says “that’s the last thing I want to do…”
A young woman has been attending your day program in order to attempt to manage her restricting, bingeing and purging behaviours. Prior to starting the program, she agreed to the non-negotiables of the program, including to eat all of the meals provided during her time in the day program and not to purge after meals. But a few days into her attendance she is tearful after lunchtime and confides in you that she has just been in the toilet and vomited her meal…
An adult patient has agreed to come into hospital to work on the issue of her restricting her food, followed by significant binge and purging episodes. Prior to her admission she agreed to eat all of her meal plan whilst in hospital. Today, a week into her admission she is hostile and tearful and says “I can not eat this lunch and you can’t make me…”
These scenarios are very common for those of us who work with patients with eating disorders. They involve trying to manage what are mandatory treatment components, or treatment non-negotiables (NN). These are the situations that bring up intense feelings in both the clinicians and the patients; such as frustration, anxiety, anger, hopelessness and apathy.
When a clinician is faced with a scenario where NN are in play, we face the challenge of balancing patient safety, patient autonomy and their care responsibility to provide a safe environment that is conducive to change. But, when using treatment NN, it is the values and philosophy behind these NN that reflect our care and the manner in which these NN are implemented; and this can be very powerful.
When it comes to eating disorder treatment, we need to question how we deliver NN to patients, as we know that this has a significant relationship to the success of patients in being able to accept and relate to the need for NN in their treatment plan. And in order to help our patients work within treatment NN, it is very important that we think about how we deliver these NN: in relation to our communication style, tone, nonverbal body language and persistence and consistency between team members.
Of course, there is significant variability between treatment centres with what is regarded as a treatment NN. And for patients who may not have found one eating disorder centre helpful and pursue a different treatment centre; it’s really important that the NN are clear; their rationale makes sense and they are delivered with the right manner and compassion for the patient. This makes a huge difference to the struggle a patient may have with varying NN across programs and accepting the need to accept new NN that they previously hadn’t encountered.
Some examples of the types of issues in which programs or clinicians may differ include:
- How and when treatment under legal authority in hospital occurs
- Expectations of clients at meal times on inpatient units
- Rate of weight gain
- Rules regarding bingeing/purging/exercising
- Consequences for not following the program structure.
I think that it is essential that the use of a thoughtful process within the treatment team and between the treatment team and patients is established, so that the NN of any eating disorder program are transparent and clearly articulated, and that the treatment team has also put thought into describing conditions in which these NN are optimally implemented. It is crucial that particular emphasis is placed on their delivery, and on maintaining a collaborative stance throughout treatment (Geller, Williams, & Srikameswaran, 2001).
Importantly, there has been research into the way NN are received by both the patients, and how they are felt by individual clinicians (Geller, Brown, Zaitsoff, Goodrich, & Hastings, 2003). This research has found that patients tend to understand the need for NN to be in place (e.g. the need for involuntary treatment when they are at significant risk); but the patients did find that the way that these NN were delivered had a significant of the way they were received. This led to patients feeling a lack of respect, and a strong aversion to the choices being taken away from them; especially if the rationale wasn’t clearly delivered. The clinicians similarly agreed; that they would rather work collaboratively with patients at these key points in treatment.
What we have established so far, is that they key issue we need to discuss in eating disorder treatment is how we develop and maintain what we call treatment non-negotiables in a way that is: collaborative, supportive (so that they can help foster and increase motivation to change), and operate in an environment that is usually high in emotional intensity for all involved (the patient, co-patients, and the eating disorder team).
So, what are treatment non-negotiables?
Treatment NN in eating disorder management are the limits, boundaries or rules that you place upon the treatment being provided to the patient. They can be thought of as a framework, structure of treatment, or a therapeutic frame to hold the patient and treatment team accountable given the significant mortality that those with eating disorders face.
Treatment NN are like rules of treatment; but in order to be successful they must be constitutive of the therapeutic framework and therapeutic process and have a positive, not a negative connotation. This is especially important in the care of people with eating disorders, who are often highly sensitive to experiencing shame and guilt, which can interfere with their capacity to complete treatment.
Principles of Non-Negotiables
In order to operate successfully, Josie Gellar, one of the most influential clinicians and researchers in this area has made some important insights into how non-negotiables in eating disorder treatment are most successfully applied.
She says that non-negotiables of eating disorder treatment should be:
- Centred around ensuring safety
- Prepared to foster an environment that is conducive to change for the patient
- Promotes a patient’s self-awareness, motivation for change, and self-acceptance
She has written a paper, together with Srikameswaran about this very topic: Treatment Non-Negotiables: Why we need them and how to make them work (2006). Some of the content of this piece of writing is based on this important paper.
Types of Treatment Non-Negotiables
I’ve worked across many settings of styles of approaching treatment NN. They can be broadly broken up into four categories; all with their advantages and disadvantages:
- Arbitrary NN
- Surprising NN
- Inconsistent NN
- NN which Minimise Personal Responsibility
Arbitrary Treatment Non-Negotiables
Arbitrary treatment NN are those kinds of rules where it seems unclear what the rationale for the NN is; or when a rationale has not been explained to the patient. For example, in some treatment facilities, a NN may exist, where for the first week of treatment, all patients must wear pyjamas. A patient may be told that this NN is about patient safety and has been a rule of the program ‘for years.’ Or, another example of an arbitrary treatment NN is when an adult enters an inpatient program and is told they have no access to their mobile phone and must ‘hand it in’ for the duration of their care ‘for their own wellbeing.’
But, when a treatment NN seems arbitrary, like in these rules, patients may view treatment providers are careless or not thoughtful; and this can result in diminishing a sense of confidence in the care they will receive; negatively impacting the therapeutic alliance. This is especially the case if a patient is angry about the NN (e.g. cannot see a sensible rationale for the necessity to wear pyjamas, or for removal of a phone for which one may rely on to maintain a relationship with supportive others, or even children whilst in treatment). In this case, the anger and frustration about the unreasonable NN is a powerful distractor from working with the treatment team on important treatment goals. For example, conversations centre around trying to understand why someone must wear pyjamas, or not have their mobile phone; team members may be unsure why this is in place, but they are the longstanding program “rules.” But the problem with this approach is that patients begin to feel that the treatment team aren’t clear on what they are doing and so they begin to feel that the treatment won’t be helpful for them.
To minimise arbitrary NN on your treatment programs it’s important that you follow some of the principles around the development and implementation of treatment NN:
- Remember that having limited or restricted choices is a serious matter
- Make sure that each NN has a sound rationale
- Take time to reflect upon whether existing NN are necessary and/or are being implemented fairly
- Be able to explain, without discomfort, why a nonnegotiable exists
So, in the case of a treatment NN around the wearing of pyjamas, or removal of a mobile phone whilst someone is in treatment; if treatment team members became aware that they could not provide a sound rationale for the pyjama rule, then a solution to assist with identifying any arbitrary treatment NN’s is to raise the issue at a team meeting. This can help the whole team to understand why the NN was first in place: in the case of pyjamas it may have come from a time long ago when the facility mainly had involuntary and very ill patients; and the idea of wearing pyjamas came from reducing patient mobility; but this is no longer seen as a helpful or necessary part of the program. In the case of a mobile phone, it may have arisen as a NN after patients used their mobile phones to access pro-ana material; however, the risk versus benefit of having adult patients be able to have autonomy and connection to their family is a reasonable basic right, even with this risk.
No Advance Warnings: Non-Negotiables that are Sudden
A sudden implementation of a treatment NN is often met with quite a negative response from patients; because if you’re not warned of a program or treatment NN clearly beforehand, when one is implemented it creates much anxiety and distress; is likely to be counter-therapeutic and result in lower readiness to change. Not only this, but surprises in treatment can lead to energy-consumptive confrontations and diminish trust in the treatment team themselves. A surprise also has the effect of denying a patient the right to change their behaviour to avoid the NN.
But if a NN is clearly stated; like in an outpatient who experiences deterioration of weight consistently over a number of weeks with corresponding health consequences; and the patient knows that this is a bottom line for hospitalisation then this can help patients turn their situation around. In this case, knowing that a hospitalisation will inhibit freedom, and result in a lack of control over personal weight gain may help patients to prevent the spiralling of any behaviours that might lead to a hospitalisation occurring.
To minimise surprises in treatment, it can be helpful to:
- Talk about NN as early as possible
- Invite clients to share their reactions to NN and answer any questions they may have
- Provide reminders if it looks like a NN will need to be implemented
And if you find yourself in a situation where you are suddenly implementing a surprise NN and your patient is in distress, it can be helpful to mitigate against a deterioration in the therapeutic by apologising for the surprise and inviting the patient to share their feelings. As a treatment provider it’s important to be candid with a patient about the conditions under which hospitalisation would occur in the future and to agree to give her advance warning if it appears to be getting close to that point. Having this conversation also allows for the patient to be informed; such as about the hospital protocol for weight gain with eating disorder patients so she knows what to expect in the upcoming admission.
When the following through of NN is inconsistent then you may find you have NN which differ according to patient; or a NN differing according to care provider. This can be very unhelpful on treatment programs and causes splitting between patients and between patients and the treatment team; as well as the treatment team themselves.
For example: if a day program has a treatment NN about purging following meals and inconsistently applies this across patients, then patients can feel a diminished sense of confidence in the program and clinicians and may begin to test NN limits. This is a natural response to a perception that different NN for different patients may result in (justifiable) complaints and feelings of patient favouritism or persecution.
It’s also important to consider that when care providers having different NN standards this can result in certain clinicians being favoured, disliked or avoided by clients. In the example, of purging in a day program, if one patient tells another patient that they were able to get away with purging on the premises whilst another patient was asked to leave, the group member receiving this information can become upset and wonders why the rules for the two patients were applied differently. This can result in that patient going on to (justifiably) complains to a therapist that another patient appears to be receiving special treatment. The patient can then experience a sense that they do not feel safe and lose confidence in the program guidelines.
The following strategies can help minimise inconsistent Non-Negotiables
- Work out whether a NN that you or your team believe in is one that you can follow through on consistently in practice
- If you can’t implement a NN consistently, consider eliminating it
- For teams, only use NN that all team members are able (and willing) to implement
If you do identify that there has been an inconsistent NN applied in your treatment program, then it can be very helpful to address this by discussing the patients’ concerns with the team. The team then has the opportunity to review the NN and decide that the NN needs to be implemented consistently; and that the patient who remained in the program after purging should be asked to step out.
The team should also review anything from within the team itself hat contributed to the inconsistent application of the NN. For example, it may be that the ability to implement the NN reveals that a clinician felt that were rushing that day because the discussion time meant that the planned material hadn’t enough time to be delivered; or that this clinician hadn’t wanted to feel like the bad guy; or that the clinician didn’t agree with the NN and did not want to shame the patient by exiting her from the group. These kinds of discussions are really important in teams, because they can help the clinician involved feel supported as they discuss a belated step-out from the day program with the patient; and to review all the personal issues this raises for the clinician, through perhaps providing more supervision for this clinician.
Non-Negotiables where Personal Responsibility Minimised
A very challenging and unhelpful type of NN is when the clinicians, or treatment team assume responsibility over more domains of the patient’s life than is necessary, or do not provide the patient with alternatives and choices.
A good example of this occurs on inpatient units where patients are told if they don’t eat 100% of the food on their tray, and they don’t drink the supplement drink to make up for the nutritional short-fall; then a nasogastric feeding tube will be inserted. This kind of scenario results in significant power struggles and patient resistance to treatment. This is an example of an overly controlling NN; where the domains that highlight patient’s feeling responsible for their recovery are not recognised or acknowledged; and can diminish patient’s from feeling responsible for their own recovery.
I think that it’s very important to highlight that NN which deny patients the opportunity to make some choices can lead to setting a patient on a course more likely to result in relapse once the patient is no longer under the influence of the NN. This can, especially in the case of a nasogastric tube feeding scenario, perpetuate client dependency on hospitalisation.
So in this example, if a patient feels unable to eat so many of the foods on the tray and begins to argue with the treatment team about the meal plan and removes the nasogastric tube whenever it is inserted, there’s a good chance that as soon as this patient leaves hospital they are going to lose the weight they has been forced to gain.
To maximise patient personal responsibility, it can be helpful to:
- Make sure that non-negotiables only pertain to domains that are necessary
- Provide options and choices with regard to the non-negotiables
- Recognise and validate patients’ experiences (i.e. in many cases, all options are unattractive)
So in this case, when the team begins to feel frustrated with a patient who is not finishing all of their meals, then a consultation with an eating disorder specialist who can speak to the patient and then to the team may help the team understand that lack of autonomy is a significant factor in this particular patients distress; and contributes to the confrontational relationship between the patient and team members.
As a result, the specialist may recommend that the team review their values regarding the role of personal responsibility in promoting lasting change and suggest that they revise the program to reflect these values. In this case it means that the team needs to consider how patients are more likely to benefit from treatment in the long term; and how patients are likely to maintain the changes they make in treatment by being part of the decision making.
So, in the case of a patient not finishing a meal, an alternative would be offered to support autonomy around re-feeding – selecting from a choice of meals (including changing an unattractive meal for a suitable replacement) or drinking a meal supplement as a replacement. And, if the patient is unable to eat or replace, then discharge from the program is an expected and planned response (provided there is no medical risk in which case the patient would receive nasogastric feeding, probably under relevant legal Acts).
The important change in NN that involve personal autonomy are that when a team acknowledges that, from the patients’ perspective, none of their choices are attractive; but they can be presented in a manner which reflects that they are considered necessary in order to ensure patient safety. Teams can also ask patients how they can support them, given the NN constraints and develop individual ways to help.
Concluding Statements: Developing a Non-Negotiable Philosophy in Teams
There are common challenges encountered by eating disorder teams worldwide with regards to the setting and implementing treatment of treatment NN. As a result, it can be helpful to have a commonly agreed upon philosophy that help both treatment providers and patients to balance the important values of principles of safety, autonomy and respect.
As a result, it is important that when you are developing NN, care providers value being collaborative, are open and thoughtful; and draw from real clinical experiences. And once developed, that treatment NN are best thought of as ‘bigger than all of us.’ That is, they function like ‘laws’, and although they are contextual, they are not arbitrary. And most importantly, these ‘laws’ or NN can absolutely, and should absolutely, be changed if they do not work.
~Dr Sarah Wells, Clinical Psychologist