Individualised care planning

The use of evidence-based interventions (EBI) is at the core of day-to-day clinical practice for clinicians treating patients with eating disorders, and this aims to minimise harm and provide a high standard of care for the people we treat. For clinicians, there would ideally be multiple treatment options, with a hierarchy of success depending on various factors, that can be offered and discussed with each patient so treatment plans can be made in conjunction with the them. There is an evidence base for the treatment of eating disorders, but mostly psychotherapeutic for patients at higher weights and in out-patient settings.¹⁴ There are few models of in-patient care for eating disorders with a robust evidence base, leading to significant variation in practice. The exception is emerging evidence for enhanced cognitive behavioural therapy (CBT-E) for adolescents and adults with anorexia nervosa ^{Reference Grave, Conti and Calugi15} and integrated enhanced cognitive behavioural therapy for adults with anorexia nervosa (I-CBTE).^{Reference Ibrahim, Ryan, Viljoen, Tutisani, Gardner and Collins16} However, the risk remains with structured programmes that vital individualised aspects of a patient's treatment may be overlooked within these manualised programmes, and they have yet been adapted for patients with comorbid presentations.

For individuals with severe and complex eating disorder presentations who require admission to specialist mental health in-patient units, goals of admission are often based on measurable outcomes, such as weight restoration, reduction in specific behaviours or achieving a specific nutritional intake. Unfortunately, this may not always align with the person's goals and priorities at the time of treatment.^{Reference Mitrofan, Petkova, Janssens, Kelly, Edwards and Nicholls17} This conflict in aims can lead to patients feeling that their treatment is not helpful and lead to conflict with healthcare professionals, entrenching resistance to treatment. Healthcare professionals in turn may feel they must continue restrictive practices to achieve weight restoration goals and avoid repeated weight loss whenever restrictive measures are rescinded. NGT feeding under physical restraint beyond the point of medical stabilisation is a good example of this reasoning. The participants in this study have highlighted that individualised care planning that has been done collaboratively with shared goals is what helped them to move on and no longer need this restrictive intervention. This aligns with the in-patient clinical guidance^18,19 about the importance of care plans being developed collaboratively developed with the patient, and their family or carers if appropriate, and being individually tailored to meet their physical, psychological and social needs.

Conflict between the individual and their treating team can further be exacerbated by treatment programmes where patients, regardless of their presentation or personalities, are expected to follow the same treatment pathway as their peers. This demand for individualisation can present challenges for in-patient units where some coherence of approach and clarity around expectations can be helpful. However, when boundaries are challenged (such as consistently eating less than expected or needed for health) and patients resist the efforts of their treating healthcare professionals, restrictions can quickly escalate. The nature of in-patient care can increase the individual's sense of isolation and focus on their disorder. This is highlighted by a narrative account by O'Connell: ‘During these admissions especially, my inner world had become bleak and chaotic. My treatment reflected this, as it became ever more restrictive. The more I adopted the “anorexic role”, and the more time I spent under restrictive treatment conditions, the more I was distanced from “normal life”.’^{Reference O'Connell20} Indeed, research suggests that patients may resist treatment in order to try and exert some control over their situation^{Reference Tan, Hope, Stewart and Fitzpatrick21} or to assert a sense of autonomy,^{Reference Seed, Fox and Berry22} and this can lead to a cycle of resistance to treatment and more restrictive measures being put in place.^{Reference MacDonald, Gustafsson, Bluik and Clausen23} Addressing the issue of control to break the deadlock so it does not escalate restriction may be helpful. This may include listening to people's preferences; allowing more choice in unrelated areas may also help increase dialogue even though some areas such as food intake may need to remain non-negotiable.

When restrictive practices or interventions are required, there are clear principles: ‘best interest of the patient’, ‘least restrictive practice’ and ‘proportionate to risk’ inherent in mental health legislation. Without informed consent, which is absent when a person is NGT-fed under physical restraint, clinicians utilise powers under mental health legislation. Nevertheless, for each use, they must still justify that they have reason to believe that their patient would benefit from this highly restrictive practice, that it is in their best interests and that a less restrictive option is unfeasible or ineffective, and then only use it as little as possible. Simply claiming that a programme of repeated NGT feeding under restraint is needed is unlikely to meet either ethical nor legal requirements of mental health legislation. Therefore, individualised care is needed to negotiate the optimal treatment and the least restrictive option at any given time.

Good communication

Good communication and planning at the start of any mental health admission is important. Research suggests that the best practice is advance care planning between patients, carers and the clinical team where there is a joint discussion and agreement regarding and potential use of restrictive practices and the conditions under which they might occur.^{Reference Fuller, Tan and Nicholls6} This should help individuals have a sense of ownership of the decision-making and understand that the clinicians are working with them from the start. This could become critical to success and collaboration if patients subsequently lose weight to the point of medical instability and clinicians need to consider overriding their wishes.^{Reference Tan, Hope, Stewart and Fitzpatrick21,Reference Buston24,Reference Tan, Stewart, Fitzpatrick and Hope25} Advance care planning can promote patient participation and prevent loss of agency when clinicians need to employ restrictive measures and help shift the narrative from ‘They are doing this to me, I didn't know this would happen, they just suddenly decided they would,’ to ‘This is my care plan, I did know this might happen and furthermore I do know why even if I can't agree.’^{Reference Fuller, Tan and Nicholls6}

It is important to acknowledge two key issues that may complicate the ability of a clinical team to communicate with their patients. First, severe malnutrition can exacerbate neurocognitive deficits such as rigid thinking and reduce the ability for patients to understand, retain and weigh up the information they are being given i.e. impair competence.^{Reference Tan, Hope, Stewart and Fitzpatrick26,Reference Lang, Lopez, Stahl, Tchanturia and Treasure27} This is not uncommon presentation in people with restrictive eating disorders such as anorexia nervosa. Second, a few patients will also have co-occurring psychiatric conditions such as autism spectrum condition (ASC) or depression, which may further influence how they respond to clinician expectations to increase intake.^{Reference Fuller, Falcoski, Hudson and Tan12}

Trust

The theme of trust was clearly identified within this research. There is little evidence in the scientific literature, which is because trust is difficult to quantify, unlike a person's weight or psychopathology scores. Some researchers have identified that trust is a ‘neglected concept’ in mental health services^{Reference Brown, Calnan, Scrivener and Szmukler28} and that the betrayal of trust is identified as ‘normal part of care’ when working in mental health.^{Reference Vassilev and Pilgrim29} However, patients and families all say that trust is critical to allowing individuals to do what their eating disorder is telling them they should not be allowing. Indeed, research highlighted that trust helps the development of good therapeutic relationships.^{Reference Mitrofan, Petkova, Janssens, Kelly, Edwards and Nicholls17,Reference Gilburt, Rose and Slade30}

Strengths and limitations

This study adds to the literature examining what best practice may look like when NGT feeding under physical restraint is required. Qualitative interviews were used, and this allows for multiple perspectives, that of PWLE, parents/carers and clinicians, to be acknowledged in ways that other research methods cannot. Furthermore, research suggests that qualitative research can lead to a better understanding of what patients perceive as better mental health care.^{Reference Buston24}

There are some limitations to this research. The study only represents the views of participants from England and may not be representative of views from other countries. There are relatively few participants, particularly in the PWLE group, because understandably recruitment was challenging as people were often reluctant to speak about traumatic and difficult experiences. The interview transcripts were generated by Microsoft Teams, and the audio recordings were used to corroborate the transcript; however, if there was a loss of connection, moments of the interview could have been missed. The PWLE were all diagnosed with anorexia nervosa, and the parents/carers were caring for someone with this diagnosis, and NGT feeding under physical restraint can also occur in patients with other mental health diagnoses; ^{Reference Fuller, Tan, DeCosta and Nicholls3} therefore, this may not be an accurate reflection for all patients who require this intervention. One person reported receiving this intervention three decades ago, and treatments strategies for anorexia nervosa have developed and care philosophies have changed towards a recovery-oriented model ^31,32 with less coercive practice.^{Reference MacDonald, Gustafsson, Bluik and Clausen23,Reference Sugiura, Mohomed, Saxena and Patel33} This participant's experience may not reflect modern practice; however, their participation is still valid as there may be people who historically experienced similar models of treatment and care who are still receiving care as a result. Finally, the themes arising from their interview were not markedly different from the themes from other PWLE who had more recent experiences of treatment.

One surprising aspect that was not reported by PWLE was the possible benefits of peer support, as research suggests that this can improve outcomes for those with mental illness^{Reference Davidson, Chinman, Sells and Rowe34} and anorexia nervosa.^{Reference Beveridge, Phillipou, Jenkins, Newton, Brennan and Hanly35} This may be because it is not routinely employed in English in-patient mental health units. When surrounded by an equally unwell in-patient peer group and possibly also subject to NGT feeding under restraint, a sense of hopelessness may be fostered within an individual, and even evoke unhelpful competitiveness between patients for those requiring NGT feeding under restraint as a sign of loyalty and commitment to the eating disorder. Engaging with those who are in recovery and received this intervention but have then overcome their difficulties may foster hope and help patients to cope with or even avoid the intervention altogether.^{Reference Beveridge, Phillipou, Jenkins, Newton, Brennan and Hanly35}

Clinical implications – best practice

There were strong views regarding individualised care, the importance of good communication and trust. Treatment of an eating disorder requires both a patient's mental health concerns to be addressed and physical health restoration to take place. At times, clinicians will prioritise one over the other, i.e. if there is an immediate threat to life, physical health must be prioritised to prevent catastrophic outcomes. However, to help the group of people who experience NGT feeding under physical restraint, there should be a process of listening to their concerns, setting shared goals, individualising their care plans with advance discussion of this procedure and its place in treatment, negotiating at times where appropriate and problem solving at others, and giving as much choice as possible in other aspects of treatment. This process is therapeutic and patient-centred, as well as giving dignity to the individual. Delivering nutrition via NGT feeding under restraint is a highly aversive and restrictive process which, although lifesaving, runs a high risk of emotional distress for all, disempowerment, stripping patients of their human dignity, sense of autonomy and sense of self, inflicting trauma, and destroying relationships with clinical staff. It should therefore be employed with the greatest of sensitivity and care. The process of listening, working alongside our patients, giving choices wherever possible and developing shared goals is essential in the treatment of eating disorders in general; this is even more crucial in NGT feeding under restraint, rather than being antithetical to compulsion. It is also essential to prevent entrenchment of conflict between healthcare professionals and people undergoing NGT feeding under restraint, which may contribute to extended use of this coercive intervention.

Future research

There is very little published regarding NGT feeding under physical restraint. By acknowledging the importance of individualised care, good communication and trust, the next steps would be to identify units where this is well established and to study how they do this. Researching these practical aspects in greater depth would be important to enable units to implement consistent and effective strategies to reduce the use of NGT feeding under restraint and improve the care they provide when it is needed, to minimise harm. Our study identifies some important mechanisms or approaches that could be built into clinical practice and be tested in clinical trials.