Clinical practice guidelines for eating disorders – Comments from the front line

Phillipa Hay and her team are to be congratulated on the recently released updated Guidelines for the treatment of Eating Disorders (ED) (Hay et al., 2014). Anorexia nervosa (AN) is reinstated in its rightful position as the most lethal of the psychiatric conditions. Recovery is a slow and arduous process which requires typically 5 years. But many do not get better and AN may be present across the lifetime. These are the first guidelines to address the needs of those who will not get better. A new and bleak diagnosis Severe and Enduring Eating Disorders (SEED) is given a formal place at the table, and there is discussion of the skills required to manage chronically ill patients couched in the Recovery Model (Dawson et al., 2014). There is too recommendation of seamless treatment across inpatient, day patient and outpatient care. Each is a sensible and welcome suggestion.

But as a psychiatrist with extensive experience in treating ED in both Australia and New Zealand (G.B.), I have an immediate problem – they are guidelines and have little impact on the practical realities of treatment now. This is especially true for adult AN, which has become an uncomfortable pass-the-parcel in which desperate families and general physicians (GPs) participate looking for something that does not exist. For adults with an ED, there are few options, and none will meet the guidelines’ hopes for seamless and sustained treatment. Thus, the unwell adult easily goes on to have SEED from which recovery is unlikely.

Who are these young people we consign to inadequate treatment. They include some of our own. In my role as the Student Wellbeing Advisor at University of New South Wales (UNSW) Medicine, I (U.V.-C.) assess ~115 medical students with mental health problems each year, approximately half have an ED. Yet the options for referral to adequate treatment are despairingly limited, and even worse for those without private health care.

The Butterfly Foundation (2012, 2015) recently commissioned reports on ED. The first revealed that almost 1 million Australians suffer from ED, with less than 30% in treatment. An estimated 1941 Australians died from ED in 2014 alone. The yearly socioeconomic cost was estimated to be AUD69.7 billion.

Many with ED will become acutely or chronically medically compromised. The Guidelines and the NSW Strategic Plan for Eating Disorders 2013–2018 give excellent instruction on the medical management of AN. But for adults, this happens reliably nowhere. I have had a patient with body mass index (BMI) 10, bradycardia 27 BPM and Neutrophils 0.3 × 10⁹/L sent away from a major NSW hospital Emergency Department with the comment ‘I could find nothing the matter’. Admission usually results in a desultory brief stay involving rehydration and discharge. So, my sickest patients are at home.

The strategic plan too emphasises seamlessness, especially between private and public services. But the Private Hospital system is barely engaged despite the great majority of inpatient beds for ED lying there. There are only six inpatient beds in the NSW Public Health System while the promised Centre of Excellence at Royal Prince Alfred Hospital (RPA) remains awaited. The Private sector currently contributes about 42 beds with 22 being added at Northside West Clinic.

Private Health Funds restrict mental health admissions to 3 weeks before stepping down bed-day payments. Without residential care options, ‘refeeding’ to a survival level is often all that can be accomplished. For well-heeled Australians, recognising the need for long-term and seamless care, treatment in the United States or Europe presents a realistic option. Notably, an enquiry into the cost effectiveness of optimal treatment for ED in Australia (Butterfly Foundation, 2015) determined that the benefits of provision of optimal treatment to all new cases would outweigh its costs by more than 5.38 to 1. Despite the identified enormous value to government and the community, in switching to optimal treatment for ED in Australia, this seems distant.

The Guidelines demand person-centred care; what does this really mean? The article by architect Golembiewski in the March Journal provides helpful discussion – ‘… unsurprisingly, it’s the clients that have those rare empowering client/therapist relationships that benefit most from treatment’ (Golembiewski, 2015: 203). And there is the rub. In my view, adults with ED have Ego-Syntonic Disorders. They identify with the drive for thinness and are terrified of treatment or recovery. And they have likely moved beyond parental influence, but they are still engageable and treatable even though a high level of skill and persistence is required. Clinicians are traditionally disturbed by the combination of fierce insightlessness, medical unwellness and shocking appearance. Psychiatrists appear to have abandoned this task despite having the best skill set and training to assist.

When patients will not engage in treatment, there are important decisions to be made. Despite intense debate in the United Kingdom, this issue is almost untested here. The National Health Service (NHS) allows lengthy inpatient treatment where necessary including under compulsion. Sly et al. (2014) investigate the nature of premature termination of treatment for AN and point out that ‘… patients with longer histories appear more likely to discharge themselves prematurely and hence in future should be identified at point of admission and offered additional support to stay in treatment’ (p. 45). The luxury of this debate is lost where clinicians become isolated and subject to completely inadequate options, which is perhaps why a young woman with a BMI of 8 is refused any further treatment at a major Sydney hospital (which has ED beds) because she is ‘palliative’.

When we remain silent, where should the family appeal?

The Guidelines muddy this issue further by including the generic phrase ‘recognises the dignity of risk’, which must not be interpreted as allowing insightless patients to opt out of treatment. This is of course not the same as offering more realistic and achievable goals as Sly et al. (2014) note.

Why are psychiatrists absent in true advocacy for these patients? Can we do nothing?

The guidelines are excellent; but real advocacy is required too. It is good for patients, and for us.

See RANZCP Guidelines by Hay et al., 48(11): 977–1008.