Taking issue with ‘non-compliant’ in eating disorder care
Taking issue with ‘non-compliant’ in eating disorder care
“J” has been sent home from hospital as ‘non-compliant’. We have nowhere to turn; every hospital and clinic in our State has given up on “J”. She is 29 and has had Anorexia since she was 14; we are frightened we will lose her. “J” has lost everything, financially ruined, her car was repossessed, she is medically unfit to work and a danger to herself, her friends have long gone; she has no relationships; people ignorant of her illness judge her emaciation. At times “J” asks us to let her just die, she feels she can’t fight anymore. We, too, are exhausted emotionally and financially, and “J”’s siblings are suffering.
– Mother, Western Australia
Dictionary definition of ‘non-compliant’: failing to act in accordance with a wish or command.
So, a 29-year-old, chronically ill woman is discharged from hospital, sent home because she refuses to obey ‘get well’ orders. Hello? This is 2014. I am enraged.
A clinic in the State of Victoria, 3500 km on the other side of Australia, on learning of this sad situation, is offering “J” a bed if her health meets the admission criteria and is sufficient to travel the long distance. The challenge is great, as ‘J’ explains:
‘The clinic’s offer is the first spark of hope I have had in years that my loneliness and feelings of being lost and shrouded in misery and internal pain may have a chance to end.
Although I am extremely frightened of getting well and losing my AN, I am praying the clinic will help me overcome these fears and help me move beyond the daily battle to survive, to achieve a life of peace and happiness.
Right now though, sleep is also a fear as to what dreams may haunt me, or even if I will ever wake up ….’
I pray that ‘J’ will gain the strength required for this journey of hope. If you believe in prayer, I hope you will pray, too. I am sharing a little of this young woman’s fight for life because true stories like this should not be happening today. Let’s delete the ‘should’ and rephrase – true stories like this must not be allowed to happen today.
Eating disorders are family illnesses
I am writing a book called My Family is Back with Professor Ivan Eisler about multi-family therapy for adolescents with Anorexia Nervosa (AN). Such therapy is not yet available in Australia. Prof. Eisler does not claim that multi-family therapy is the panacea for AN, but every one of the families I have interviewed in the UK, USA and Canada applaud this treatment in learning about the illness, in progressing recovery, in treatment collaboration, in strengthening the family unit. Knowledge is power in fighting an eating disorder.
I decry the great loss of human life, and quality of life, through lack of recognition and implementation of evidence-based treatments and coping skills, for both carer and patient. The families who share their stories in My Family is Back were fortunate to receive evidence-based care.
Two Australian women, on opposite sides of our vast country, provide a stark reminder of the trauma that occurs throughout entire families when eating disorders go untreated from childhood into adulthood; when relapse occurs; and when eating disorders appear in midlife. One woman is 29; the other is 39. Both are struggling for life; their parents, partners, children, distraught. My heart yearns for these two women and families and sufferers everywhere who do not get:
* the opportunity of early intervention, and
* step up and step down programs in family-based care in the treatment of eating disorders.
Support the Carers
I want to jump up and down at the health system for not providing a better network of support for sufferers of eating disorders, especially those living outside our major cities. We need a safe place where families can come for an intensive four or five days, and experience therapy in real time, under expert supervision and support, with other families. The evidence-based research on family collaboration in treatment of eating disorders urgently needs to be implemented in practice. We need to help the patient AND educate the family/carers – and this applies to family/carers of both child and adult sufferers. The illness fallout is great.
Battery caged chicken being force fed
Too many hospitals/treatment centres continue a revolving-door practice where they treat the clinical symptoms, (‘I feel like a battery caged chicken being forced fed’, one patient said), but not the illness which is based in the brain, and send the patient home, where they immediately start to lose weight again. It’s like fattening up a cancer patient and sending them home without the benefit of chemo.
Flexible discharge a ‘must’
To guard against relapse, we need a health care structure that is more flexible with discharge, or at least find a solution to not losing the patient, to limit the risks of relapse when they are discharged. A Ronald MacDonald type house, where families can come and learn and support their loved one during that first week out of the hospital or clinic – and let the patient continue, maintain support links, as an outpatient for that week – would be invaluable. We need step down and step up programs. Crucial. Much money is wasted in doing the same useless thing over and over again; patients are falling through the cracks of the health care system. Like we are putting newborn babies out on the footpath, expecting them to walk and know the road rules before they can crawl.
In Australia, many private units seem to be using fixed short admission times (even though they may plan to re-admit the patient for a further period after a week or two out). Restrictions from health insurance companies may be the reason for this. This is fine for patients who are well on the way to recovery with just the 40 day/six-week admission or less and for those who can access intensive day programs after discharge, but is a major problem for those who need a lot more nutritional restoration because:
- they were so malnourished initially; and/or
- received inadequate degree of restoration during the admission for whatever reason; and
- are unable to access a day program or have such little support once they get out that they never come back for the planned review and re-admission.
A NSW patient who went to an interstate clinic for treatment was doing well. But this clinic has a fixed maximum 40 day admission then discharge and review – so when this patient got out she faced a six-hour car trip home and once there, rapidly lost what resolve she had to make the six hour drive back to the clinic for review. She lost all the gains made in her initial recovery stay, and took months to get back in touch and get readmitted, in a worse state before.
Dr Rod McClymont, Bathurst, has major issues with this situation:
“I have no problem with a standard routine and protocol as a baseline for treatment first off, all things being equal, but I have ethical objections to the practice of continuing to do the same standard process in patients where it has been demonstrated to not be working – that is, getting to the ‘revolving door’ stage.”
It’s time for clinicians and health services to look at how they can do things differently to break the impasse for these patients and get progress, including specifically planning a more intensive or other treatment plan that aims to circumvent the recovery roadblock.
Dr McClymont says solutions could include:
- Advising/facilitating the family to relocate temporarily so they can access a day program
- Finding other ways to get around the insurance company imposed road blocks – for example instead of sending the patient out for a week home, being proactive in planning ways to minimise the likelihood of them not coming back – maybe arrange for the family/partner to stay with the patient in a nearby accommodation for a week while they attend day intervention (or even just have a holiday near by) then return for the re-admission.
As Dr McClymont says, there a thousand possible ways to do it, but NOT doing something different is unethical and substandard practice:
- It is like Einstein’s definition of insanity: ‘doing exactly the same thing, in exactly the same way and expecting a different outcome!’
- It is like the oncologist using the same chemo that didn’t work last time or continuing with an antibiotic that isn’t working in someone with pneumonia just because ‘that is the one we use’.
Discharging patients with AN at a nutritional level that is way below that needed for the secondary exacerbation of their AN to subside, without provision of external supports, is WRONG. The practice is a waste of human struggle, a wasteful destruction of family relationships, a waste of health funds. Relapse is assured. Families are crying out for help so they can do the best for their loved – they are happy for their home to be the ‘recovery centre’ but they can’t do it alone; they need and deserve more home-based support.
For a system or State to say ‘we have done all that can be done’ and send an adult with AN home for ‘being non-compliant’, when there are established ways to provide effective care for that patient, is as bad as an oncologist saying ‘we can’t treat your cancer because we don’t have the right drug in our State’ and refusing to refer the patient for care in another State where the drug is available.
Home Support is Crucial
Many clinicians of adult eating disorder patients are caught up in seeing the illness but not the patient, in managing the individual person and ignoring the family, or worse, seeing the family as usually the cause or a hindrance to recovery. Those same clinicians wouldn’t expect someone with psychosis, acute mania or marked anosognosia from a stroke to just pull themselves together and recover without support.
Families, often with chronically ill children or partners, tell me they have never heard of family-based treatment, have never heard of the New Maudsley Approach, or UCAN. Makes me think that some of our eating disorders specialists have not heard of these evidence-based treatments either, for surely they would be recommending them to their patients and the patients’ carers. These carer support models can make all the difference between coping and not coping, between recovery and relapse.
These treatment models explain and provide skills training and support for carers, usually the patient’s partners and/or parents, to be an integral, collaborative part of the treatment team.
To get you started, some literature links on evidence-based treatment models available today:
- Daniel Le Grange and James Lock – Help your teenager beat an eating disorder
- June Alexander and Daniel Le Grange – My Kid is Back – Empowering Parents to Beat Anorexia Nervosa
New Maudsley Approach
- Janet Treasure’s Skills-based learning for caring for a loved one with an eating disorder
- Janet Treasure, June Alexander – Anorexia Nervosa – A Recovery Guide for Sufferers, Families and Friends, 2nd Edition
- DVD ‘How to care for someone with an eating disorder‘ based on Janet Treasure’s work
Program for couples
UCAN (Cynthia Bulik – Uniting Couples in the treatment of Anorexia Nervosa)
Two articles for further reading:
Treating Anorexia Nervosa in the Couple Context
Uniting Couples (in the treatment of) Anorexia Nervosa (UCAN)
All of the above are explored, together with other evidence-based treatments, in a book for clinicians: A Collaborative Approach to Eating Disorders
Families and partners do not cause eating disorders; they want to help. Given the disability of a severe eating disorder, it is a tragedy that these helpful resources are available and are not being recommended to families/carers or employed in the patient’s recovery.
For health professionals to work in the eating disorder field, and ignore the literature on evidence-based treatments is worse than worse. I cannot think of any other illness, that affects both physical and mental health, where someone is expected to thrive on their own after discharge from hospital.
To expect someone with a severe eating disorder with maybe even less insight or ability, to start helping themselves without support is deplorable. Our health care providers and clinicians need to take their blinkers off, read the research, and start implementing and providing step-down care and more support in the home. Fast. Such care and support will save lives and money, both.
* This article is dedicated to ‘J’ and her loving family. I pray that ‘J’ will get to experience the peace and happiness for which she yearns. This is not too much to ask.
It is not ‘J’ who is ‘non-compliant’. It is her illness.