“We need permission to live rather than to die”

“We need permission to live rather than to die”

In the second post that June Alexander has adapted from Alykhan Asaria’s article on improving eating disorder care for underserved groups, the first of 12 underserved groups are discussed – people with longstanding eating disorders and older people with an eating disorder.

Anecdotally, eating disorder (ED) sufferers are considered ‘older’ when they reach their late 20s or early 30s, which is a very low threshold compared with people with other mental illnesses. Although longstanding ED sufferers are inevitably more likely to be older, this is not always true. Definitions of ‘longstanding’ vary considerably, with 3-10 years having been proposed as qualifying durations of illness (DOI) for those with longstanding anorexia nervosa (AN).

In this article, an ED sufferer is ‘longstanding’ if they have suffered from an ED for more than seven years and they personally identify with this characterisation. In any case, I discourage using duration of illness (and associated labels) in eligibility criteria for early interventions. Longstanding and older ED sufferers are underserved in various interrelated ways.

Underdiagnosis and misdiagnosis

Older-age ED sufferers are disadvantaged because they do not fit the inappropriate SWAG (‘skinny, white, affluent girls’) ED stereotype. Thus, their EDs are more likely to be underdiagnosed or misdiagnosed by unaware healthcare professionals.

Clinical education and training are vital to increase healthcare professionals’ awareness and understanding of ED occurrence in older adults. Educators must make it clear that:

1. People may develop EDs later in life;

2. People who are diagnosed with EDs when young may continue to be affected decades later;

3. People diagnosed with EDs when elderly may have suffered for decades but not sought help (e.g., due to generational stigma or unawareness, especially if they experienced periods of food scarcity);

4. ED symptoms in elderly people may be disguised by common somatic complaints (e.g., dysphagia) associated with old age.

Lack of rapid or early interventions

In the NHS and comparable healthcare systems, older ED sufferers are unequally served the rapid or early interventions reserved for younger ED sufferers. For example, England’s NHS First Episode Rapid Early Intervention for Eating Disorders (FREED) is only available to people who are 16-25 years old and have had the illness less than three years. Waiting times for adult ED services are already much longer than for child or adolescent ED services due to greater underfunding, under-resourcing, and a lack of waiting time standards.

I urge the FREED approach (not necessarily a formal intervention because it should become normal practice, in line with the normalisation process theory) to be served equally to ED sufferers of all ages and illness duration. This would be more cost-effective in the long term because rapid and early interventions reduce the likelihood of patients needing longer and repeated interventions.

Importantly, this is true for patients of all ages and illness duration – ED sufferers do not suddenly become ‘treatment-resistant’ to rapid/early interventions (and other treatments) on their 25th birthdays, in the same way, that they do not suddenly become ‘terminal’ on their 30th birthdays (a possibility suggested by the proposed criteria for ‘terminal anorexia’). Encouragingly, FREED clinicians support broadening their programme’s eligibility, and some already use FREED resources when helping their non-FREED patients.

Mislabelling and misguided care pathways

Labels such as ‘severe and enduring eating disorder’ (SEED) and ‘severe and enduring anorexia nervosa’ (SEAN) have been convenient for academics conducting research. However, I discourage their use in clinical practice because:

* First, ‘enduringness’ and ‘severity’ do not necessarily correlate. Older ED sufferers may experience mild ED symptoms that have persisted for many years, just as people with dysthymia experience mild but enduring symptoms of major depressive disorder.

* Second, the adjectives ‘severe’ and ‘enduring’ are subjectively defined. ED sufferers should be the definers of their own suffering.

* Third, labels such as SEED and SEAN implicitly signal that the labelled individuals are ‘treatment-resistant’, sometimes to the extent that they are ‘untreatable’ or ‘terminal’. Consequently, healthcare providers, healthcare professionals and labelled ED sufferers are encouraged to believe that recovery-based treatments are no longer worth pursuing, especially in situations where healthcare services are under-resourced to provide those interventions. Palliative or end-of-life care may then become dangerously appealing to under-resourced healthcare providers, as well as to the labelled individuals who are inadvertently made to feel guilty for ‘using’ limited healthcare resources and (in their minds) burdening others.

Broomfield et al. (2021) sensibly argued for “a universal label and definition [to] be actively pursued so that the field can unite in working towards improving the outcome for these [longstanding ED] patients”. However, researchers and healthcare professionals have unsuccessfully debated this for several years, leading to more disunity (at least in the UK).

The widely adopted but undefined labels SEED and SEAN have distracted researchers and healthcare professionals from patient-centred care considerations. Moreover, it may be argued that nosological debates about SEED and SEAN have encouraged ‘sub-debates’ about more harmful labels such as ‘terminal AN’.

A parallel ‘slippery slope’ is exhibited in wider societal debates about assisted dying and assisted suicide laws – reasonable discussions about ending end-of-life suffering evolve into perilous debates about ending mental suffering that is treatable.

Be wary of labelling eating disorder patients

I recommend that less attention be given to creating generic labels and the pre-mapped care pathways they dictate. Instead, more attention should be given to patient-centred clinical formulations and the flexible or tailored care pathways they guide. If an ED patient genuinely (not by suggestion or promotion) identifies with terms such as SEED and SEAN, then I do not oppose integrating them within that patient’s formulation.

However, I warn against promoting these labels (implicit or explicit) and the interlinked care pathways (or care tunnels) they dictate. “Fighting the ‘internal’ AN [or any other ED] ‘bully-friend’, and therefore fighting for life, is emotionally exhausting.

Being told the fight will end soon can be an enormous relief to those who are conflicted or have already accepted death. The certainty of death can seem less unappealing than the uncertainty of life. Death can seem to be the only way out, just like a suicidal person with tunnel vision may see no other escape route”.

When I was very unwell in early 2022, the terminal AN label (and interlinked palliative care pathways or tunnels) would have undoubtedly appealed to me had they been mentioned.

However, I needed permission to live rather than permission to die, and this was provided in the form of compulsory food prescriptions and contracts that allowed me to not take responsibility for eating (and thus for staying alive).

Had I requested palliative care, I would probably not be writing this article, whether or not the request had been accepted by well-intentioned healthcare professionals who shared my hopelessness at the time.

Misuse of palliative care and treatment ‘breaks’

There is no clear consensus on what ‘palliative care’ means in ED care. The National Institute for Health and Care Excellence (NICE), which creates best practice guidelines for the NHS, states that palliative care is for “patients with advanced, progressive illness”.

Surely, healthcare providers and healthcare professionals who follow these guidelines cannot sincerely offer palliative care to ED patients while concurrently insisting that these pathways are for individuals who have every chance of recovery? Furthermore, in cases where the outcome of unmitigated disease progression is certain death, surely the type of palliative care being offered might as well be called ‘end-of-life’ care?

Healthcare professionals working in the NHS have argued that, in the words of one psychiatrist, “we need to be able to take positive risks, which means stepping back if there are no changes or if the patient’s behaviours are getting worse”. However, at what point do well-intentioned ‘positive risks’ and attempts to frighten patients into making changes become dangerous gambles? Who steps forward when these gambles fail?

The reality of the system is that ‘stepping back’ usually means looking away.

ED patients on ‘breaks’ are forgotten or slip through the net while they are supposed to be monitored. I know this because mental health services have completely forgotten about me since I requested less frequent monitoring by them in early 2023. I do not bother them because I can depend on my mum and brother alone for survival. (Underserved caregivers will be discussed in a later post.)

In March 2024, the UK’s Parliamentary and Health Service Ombudsman expressed being “gravely concerned when I hear from campaigners and clinicians alike that palliative care pathways, instead of active treatment, are being offered to patients deemed too difficult to treat”.

This is despite England’s NHS National Director of Mental Health reassuring me in October 2023 that draft palliative care guidance “has been withdrawn… [and] to be clear, no patient with an ED should have healthcare services withdrawn”. Since then, I have repeatedly appealed to NHS and Government leaders, including the Minister of State for Mental Health and Women’s Health, who met me in May 2024 but, due to a general election, lost her position before the meeting’s actions could be implemented, for a public restatement of the personal reassurances already given. I repeat my request, first penned in November 2023:

“End-of-life care, or anything that may reasonably be interpreted as such, must not be recommended or offered to ED sufferers as a possible care option for their ED. If someone with an ED diagnosis has a truly terminal physical condition, then this alone, not their ED, must fully be the justification for end-of-life care considerations (as would be the case for any other NHS patient with a terminal physical illness) … Additionally, treatment withdrawals should not be misleadingly disguised as ‘treatment breaks’.”

Letter of concern to NHSE’s Director of Mental Health, dated 11th November 2023

Harm-reduction, keeping patients safe, and recovery-fostering care

I interpret “harm-reduction” as ‘keeping patients safe’. On this basis, I am not against harm-reduction approaches in ED care when accompanied by ‘recovery-fostering supportive care’.

Recovery-fostering supportive care does not need to be delivered in evidence-based treatments with time-limited goals, although having longer-term goals (things to look forward to) is important to foster hope. However, it does need to be delivered with compassion, hope, empathy, appreciation, and patience (CHEAP). Even under-resourced healthcare providers can afford CHEAP care when they try hard enough (creatively and flexibly tailored to each patient’s needs rather than to the system’s unreasonable demands).

I wrote in September 2023 to NHSE’s CEO that patients should not have “a binary choice between ‘recovery’ and ‘harm-reduction’… these two approaches are not mutually exclusive. A ‘recovery’ pathway should unconditionally involve ‘harm-reduction’ strategies along the way if necessary, as well as compassionate guidance (not coercion) from professionals who hold hope for their patients, even when their patients struggle to carry it on their own. Holding the hope means not giving up on the idea of ‘recovery’, a concept that should be defined by individual sufferers rather than by generic guidance”.

Furthermore, I caution against the conflation of ‘harm-reduction’ and ‘palliative care’. Harm reduction can be used in both recovery-fostering supportive care and palliative care. However, recovery-fostering care and equally supportive palliative care are incompatible according to NICE’s definition of the latter as being for “patients with advanced, progressive illness”. Regardless of the terminology, what truly matters (to me) is the basic principle of ‘keeping patients safe’. If the term ‘harm-reduction’ causes semantic confusion in the context of ED care, then I would not use it at all.

Outcome interpretation biases and other age-related biases

Research studies involving longstanding/older-age ED sufferers are usually not conducted for long enough to draw conclusions based on the reported ‘outcomes’. Several truly longitudinal studies and numerous anecdotal accounts that are rarely published challenge widely held assumptions that longstanding/older-age ED sufferers are ‘treatment-resistant’ or ‘resistant’ to recovery-based treatments. After patiently following the same ED sufferers for 25 years, Eddy et al. (2017) argued for active treatment because “the majority will recover from anorexia nervosa and bulimia nervosa over time”.

I caution researchers and clinicians against making premature conclusions based on limited ‘outcome’ data in clinical trials and individual cases. Furthermore, researchers and clinicians should consider what ‘outcomes’ they are evaluating. For example, are they measuring ED symptoms only, or are they considering other life domains such as comorbid ill-health (e.g., anxiety, depression), social/occupational functioning, and quality of life? Notably, Marzola et al. (2021) reported that “patients with a longer duration of illness can respond equally well to acute treatments when anxiety, depression, and body-related concerns are included as outcomes”.

Recovery (or ‘healing’) means different things to different people, and its meaning may evolve over time; there may be gradual changes in perspective and/or ‘tipping points’ when life-changing events occur, such as the birth of a child (7). I feel that the importance of symptom reduction/weight gain increases when I feel that I have more purpose and meaning in life, which I gain from trying to help others.

As someone who manages ED symptoms with the help of my mum and brother, I feel that ‘quality of life’ and ‘meaning in life’ cannot be measured exclusively using symptom-based outcome measures. All ED sufferers deserve to be completely free of their symptoms, but symptom management when symptoms have persisted for many years does not equate to treatment futility.

‘No-one should settle for a part-life with an eating disorder’

Weight restoration and symptom remission are significant (but not the only) goals earlier in EDs. Furthermore, I always encourage them to be at least secondary goals. In the compelling words of Dr June Alexander, who lived with an ED for many decades and now helps others, “No one should settle for a part-time life with an eating disorder. You deserve the richness of the full cherry of life—refuse to let the ED rob you of a bite.”

To conclude this discussion on long-standing eating disorders, I give voice to three longstanding ED sufferers in their 50s, who recently called upon healthcare providers to “listen to us”, “don’t treat me like I have done something wrong”, “allow us to feel safe and respected”, and “allow us to make a cuppa at any time”. These three experts by experience, “feel sure that an examination of current facilities and consideration of how modifications and changes can be implemented, at little to no cost, to meet the specific needs of adults with eating disorders will make a world of difference to them and others”.

These valuable suggestions include adapting standard menu plans and portion sizes to reflect age-related changes in metabolism, facilitating age-appropriate outings to enhance quality of life and motivation, and relaxing unnecessary rules such as restrictions on drinking tea or coffee.

Aly’s complete article

To read Aly’s complete article, go to: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-024-01145-2
Additionally, Aly’s article will continue to be explored over the next few weeks on www.lifestoriesdiary.com/blog