medicine


Resignation Syndrome

Ylena is just nine years old, the daughter of asylum seekers, currently living in Sweden. Shortly after arriving, while her mother was pregnant with her baby brother, she was afflicted with a strange illness. From being a very active young girl, she became listless and tired, she wouldn’t explain what was the matter, then she stopped talking altogether, she wouldn’t eat and she wouldn’t even get out of bed even to go to the toilet. There were no signs of any identifiable disease. The doctors were perplexed. All they could do was keep her alive by tube feeding, maintain hydration and hygeine, treat any infections, massage her limbs and prevent pressure sores. For most of the time, she slept in nappies like a baby. It is now five months since she became ill. Her parents are beside themselves with worry, not only about Ylena, but also the family’s immigrant status. The Swedish government has informed them that when their 13 month temporary residence expires, they will be deported. It was because their lives were in severe danger that they were forced to escape their country of origin and seek asylum.  They fear they will all be killed if they return.

Ylena is not the only child to be afflicted with this strange condition. It has been observed in the children of many asylum seekers in Sweden, and often occurs in clusters of friends or family members. It has been called Resignation Syndrome because it seems like the children afflicted have given up on life, but although the children are non responsive, their pulse and other physiological signs react to the presence of other people.

All the children affected by Resignation Syndrome have witnessed severe trauma often directed against their mother or father in their country of origin and the family is under threat of deportation. It is like, having witnessed extreme abuse, they cannot cope with the anxiety that their life will again be threatened. If their parents are taken away, how will they survive?  It is like the children have gone into a state of dissociation, like ‘Sleeping Beauty’.  But the illness tends to recover spontaneously if the threat of deportation is lifted.  Thus it seems that the cause of the illness is the extreme insecurity and the treatment is hope.

This epidemic has only been reported among asylum seekers in Sweden. Is this because Sweden has taken in a disproportionately large number of immigrants in recent years, but their policy for asylum has now become more strict, maybe because a few people were feigning illness to stay. But Resignation Syndrome is not faked.

Although the standard Swedish health policy has been to support life and wait for the illness to recover spontaneously or not, there is one clinic where they have instituted a radical new treatment. The children are separated from their parents and accommodated in friendly, comfortable surroundings, where staff play and engage with them in a positive way. There is, however, one strict rule; nobody is allowed to talk about deportation. Separated from the constant threat, children start to recover often within days and most make a complete recovery. But then they have to return to their parents and the threat of deportation.

There are clearly similarities between Resignation Syndrome and other unexplained illnesses, notably Chronic Fatigue Syndrome, Anorexia nervosa and perhaps some patients with severe constipation predominant Irritable Bowel Syndrome, all of which may be instigated by trauma. Perhaps the epidemiological links with insecurity and the therapeutic influence of hope apply to all of them. The beneficial effect of removing the children from an environment that is toxic is also important. Illness isn’t just about medicine, politics and culture can have an important influence.

This post was inspired by Crossing Continents, broadcast on BBC Radio 4 last Thursday.

David Barker is one of those intuitive scientists, a latterday Alexander Fleming who is able to follow up on a chance observation to develop a theory of fundamental importance.  He knows his stuff, he has a prepared mind and the imagination to see the possibilities of a chance observation.

Barker is an epidemiologist.  He became interested in the geographical variation of mortality from so called life style diseases, bronchitis, ischaemic heart disease, stroke, diabetes in various parts of the country and observed that this was related to poverty, impaired nutrition and high infant mortality.   Although nutrition had improved over the years, it  did not seem to prevent death from these diseases.  Barker wondered whether infant mortality and death from life style diseases were somehow connected.  In Hertfordshire, they had kept meticulous records of birth weight from early in the last century.  Barker found that those individuals born underweight and who remained  underweight at one year of age, were much more likely to die of  cardiovascular disease later in life.  These early observations were confirmed in Preston, Burnley, Wakefield and other areas of the UK and also in children born during the Dutch famine of 1944-5.  So was there something about the early intrauterine environment that programmed the infant along a track to life threatening disease?  Subsequent observations showed that low birth weight was often associated with big placentas, but what did that imply?   Did the placenta adapt in some way to try to extract nutrients from the mother or did it hypertrophy to produce growth factors?  Was it the placenta that programmed the infant to conserve nutrients? 

If Barker’s hypothesis has any relevance, it must be in regions like India, Arabia or the Southern Seas, where there is a veritable epidemic of premature diabetes and heart disease.  In India, scientists have found that even in areas where people had a very healthy life style with low fat high vegetable diets and lots of exercise, people still died early of diabetes and heart disease.  Birth weight was low but as they developed children remained thin but had a very high percentage of body fat and early signs of a tendency to diabetes – the thin-fat infants. They had concluded that this tendency was related to micronutrient deficiency and are doing a study in which they are supplementing the diets of pregnant women and comparing their infants with un-supplemented mothers.    

 The foetus is not just inert and passive.  It reacts to stimuli.  Scientists have shown that shaking a rattle by the mother’s abdomen, even through the mother is listening to something else through headphones, produces an alarm response in the some foetuses.  And some mothers will testify how their baby will be calmed by music or even beat time to the rhythm.  There is also evidence that maternal stress may produce a nervous baby and this tendency will continue throughout life. 

‘A day or two old and they’ve already got a personality; this one lies there as stiff as a mummy – a regular banker, the next one is throwing himself all over the place happy as a young horse, the next is Miss Dreary, already worried about her hemline.’    

                                                                     Margaret, scene 10, Broken Glass by Arthur Miller.

Show me the baby and I will show you the man or the woman. 

There is even data to show that male babies born to mothers who survived the bombing and shelling of Berlin, were more likely to become gay. 

The data suggest that neonatal stress can rest the hypothalamo-pituitary-adrenal axis and render the rats more sensitive to stress and therefore more susceptible to stress related but otherwise unexplained illness.  The conditions of one pregnancy may be different from another.  Anxious and busy mothers may beget twitchy babies.

This doesn’t deny the influence of genetics nor the subsequent effects of life events and life style.  Genetics provides the potential to respond to a particular environment in a particular way.  Early life experience will enhance or reduce that tendency and the environment later in life will either realise that life script or suppress it.  So malnutrition early in life will cause a person to over-consume nutrients and store them as fat, increasing the risk of cardiovascular disease and diabetes.  In the same way, emotional deprivation may cause a person to be wary and needy, so that they have less tolerance of solitude and more emotional tension and illness.   Psychotherapy is there to help those people afflicted whose developmental limitations have left vulnerable to the viscissitudes of life.  

So Barker’s hypothesis exhibits the truism that whatever happens to us makes us the person we are and life is like a tree,  the things that influence us early in our existence affect how we grow and develop much more that the events that occur later in life.   

Gone is the time when people believed that medicine could cure all known illnesses and the doctor was the high priest of the arcane rites. The advent of the internet has meant that patients may be as informed about their diseases as their doctor and the medical consultation is more a dialogue between experts than a trip to the Oracle. It’s more about containment and management than cure. Popular acceptance of the healing arts practiced by alternative and complementary therapists has led to a greater understanding of the core relationship between mind and body in the achievement of well being. 

By far the greatest demand for gastroenterological services comes from patients with recurrent or chronic symptoms of dyspepsia, abdominal discomfort and bowel upset and long term conditions such as Irritable Bowel Syndrome, Chronic Liver Disease, Inflammatory Bowel Disease, Coeliac Disease and Barrett’s Oesophagitis. A modern GI service will not only need to respond rapidly to gastrointestinal emergencies, but also to monitor and facilitate  the self care of long term gastrointestinal conditions. 

In the future, more patients will be encouraged to care for themselves while their condition is monitored with simple blood and stool tests in their local health centre. There will be greater emphasis of self help groups, which could  be facilitated by specially trained health care professionals; practice nurses, dietitians and counsellors, and resourced by the third sector; the patient charities (e.g., Core, Coeliac UK, CC(UK) and The IBS Network). The IBS Network, for example, publishes its own self management plan, operates a telephone helpline and offers medical advice by email.

Patients with long term gastrointestinal conditions crave the confidence of a consistent, responsive and reliable service. This may well be better supplied within the patients’ locality, avoiding unnecessary referrals to hospital and allowing gastroenterologists to focus on the increasingly sophisticated and complex diagnostic and therapeutic procedures required for the more life threatening and complicated conditions. 

Freed up from day to day management of chronic conditions, it could be that specialists will adopt a more supervisory and educational role, monitoring the test results of patients with chronic life threatening GI illness through shared websites, responding to email enquiries from local health services, training local health care professionals, advising patient charities, and  preparing educational videos to be disseminated via local television services.

There will be less separation between primary and secondary care in future.  It seems likely that the bulk of gastroenterological services, including diagnostic endoscopy, will be conducted within local hospitals and health centres, which specialists will visit to advise and consult. For example, dyspepsia could be managed in the community with a test and treat approach to H. Pylori, while health teams will be set up to tackle major public health issues such as chronic alcoholic liver disease and obesity.

Population screening will be increasingly important.  It is already here for bowel cancer and it is likely that simple, sensitive and specific biomarkers will become available for other abdominal cancers; pancreas, ovary, liver, stomach and oesophagus as well as coeliac disease, IBD and viral hepatitis.

And as always, the focus of gastrointestinal research will continue to shift with fashion, establishing evidence for changes in health care, improving outcomes, eliciting patient experience, estimating the nature of well being, developing appropriate biomarkers for screening tests, and seeking insight into the relationship between the gut, the mind and the alien within, the all consuming intestinal microbiome. The future may well be not so much orange but beige or brown!

This was the piece I was asked to write to celebrate Core’s 40th anniversary.  Core, previously the Digestive Diseases Foundation, is the charitable limb of the British Society of Gstroenterology.  

Sorry to moan, but I’ve got flu.   At least that’s what I think I’ve got.   It could be the return of the auld trubble – the malaria, but it doesn’t quite fit the pattern.  I begin to feel wobbly and shivery about dusk every afternoon, not every other day like I did with malaria.   My back and the muscles of my shoulders ache and I have a fairly superficial pain just above my nose where the sinuses are.   I’m coughing thick yellow phlegm and expelling the same gunk through my nose.  And I feel so tired I just can’t do any more.   No, let’s call it flu.  That’s what a lot of medicine is, after all, informed guesswork.   And before you ask, I didn’t take up the government’s offer of a flu jab this winter. 

I went to see the quack this morning.  The snow had all but thawed, but the wet ice outside the surgery was treacherous.   Was this an opportunist way of creating new business by a new entrepreneurial NHS?   Anyway, Dr Watson agreed enthusiastically with my deductions and I now have a bottle or crimson and custard minibombs to assist my waving immune system, a caution against unwise excursions into the mountains and more concern that the stress may have aroused dormant histiocytes.  I get the blood tests back tonight.   

It’s amazing in a way how a non specific infection like flu can bring on the gamut of unexplained symptoms; the exhaustion, fatigue, depressing muscle ache, the anorexia and early satiety, the bowel aches and pains, shortness of breath, the lot.   It’s like the virus switches on a non specific pattern of illness not unlike that induced by trauma, grief or disappointment, the chronic loss of hope that erodes life force.  I didn’t hear from my daughters this Christmas.  Maybe that’s what’s got to me

I came across a lovely few lines by Emily Dickinson on hope

Hope is that thing with feathers,

that perches in the soul,

and sings a song with no words

and doesn’t stop at all.

 

Only that particular yellow bird had gone off to feed in another garden. 

Time to re-stock the feeders.

 ‘How very kind of you to come.’  Molly beamed at me, her face creased into a page of tighly packed script, from which words  and phrases seemed to escape  to join the grey whorls and coils that formed a nimbus around her head.  I told her it was nice to see her and  the sentences at the corners of her eyes and the paragraph across her forehead, etched themselves more deeply into her skin as, putting her face just inches from mine, she replied with theatrical emphasis,  ‘And NICE to SEE YOU TOO!’.  

‘I’ve only come in for a few days rest’,  Betty announced quietly, her countenance vacant with worry.  ‘I came from Dore.’  Then after a pause she added,   ‘And where do you live?’   

‘Bakewell’, I said.

‘Oh Derbyshire.  Nice there’.

Mrs Tang stared,  her eyes red rimmed and her mouth  just a shrunken hole towards the bottom of a face in which the skin seemed pulled too tight.  She held out her hand.  I took it and held it from a few seconds as with a sigh, she withdrew it.  Harry, sporting a depression the size of a h’penny where  they trephined his skull,  completed another lap,  ‘Can you tell me?  Are they going to call me up? They’re still fighting over there, you know.’       

And Doris, her once so delicately curled hair pulled back off her face and held by a clip, glared at the women, who sat hunched in their emaciated bodies, picking at their skirts.  ‘Look at those sexy old ladies, they’re pulling their skirts right up above their knees  again.  It’s disgusting.  Tell them to stop.’  Then she swivelled her searchlights and  announced with disdain, ‘Old saggy arse is off again,’ as Gilbert, his trousers hanging loose, hands straining on his frame, limped to the toilet.  Finally she focussed through the mist at me;  ‘Colston!  I haven’t seen you for years.’

‘And where do you live?’  Betty asked pleasantly.

‘I live near Bakewell.’  

‘Oh Derbyshire!  Nice there.’

They sat around the room, dressed in an odd assortment of might-have-beens and cast me downs,  each with a coloured paper hat on their head.  Some rocked backward and forwards.  A few were asleep.  Most just stared.   Marjorie, her face a tragic mask, reached out to anybody who passed, and kept up a constant cry of ‘Nobody loves me’.  It was true.  Few relatives had bothered.  Those that were there looked round in panic, trapped, desperately seeking rescue but having to endure the tragic chaos of second childhood, the hopeless stench of stale urine and cold gravy.          

Bright plastic musical instruments, tambourines, castanets, drums, bits of a xylophone, lay abandoned next to the oranges and sweets, the arrangements of plastic holly and poinsettia.  A large Christmas tree had been erected in the corner,  its dark green plastic bottle brushes hung with angels and stars and flashing desolation.  The bus stop in the hallway was decorated with imitation holly and fake snow.   More plastic holly was wedged above framed photographs of Vera Lynn, Fred Astaire and Ginger Rogers, Flanagan and Allen,  Winston Churchill, the Queen’s Coronation and the posters advertising Guinness, Fry’s Five Boys, Ah Bisto and Ovaltine.   There was a large card pinned to the notice board. ‘Merry Christmas to all our residents from the staff at Silverdales’.   A big bunch of imitation mistletoe was suspended from a hook on the ceiling, but nobody kissed.  There were no paper chains or loops of folded crepe paper.   ‘Health and Safety Regulations!, the carer declared with an upward tilt of her head.  Then she announced, ‘Shall we play some carols?’  There was a little response.  Most just continued to stare, rock, pick at their noses and shout out.  Only George repeated ‘Carols’, with any enthusiasm,  mimicking  the carer’s jolly tones.

‘Oh so you’d like that, George.’  And with that, she turned the music up loud and Crosby’s honeyed voice thickened  with mock sincerity, entuned a familiar commercial sequence, ‘Jingle Bells, White Christmas,  Winter Wonderland’ – all the old favourites.   Some banged, rattled or tinkled an accompaniment.   Others just beat time with their hands on the arms of their chairs.  Most just sat and stared.  A few joined in with an occasional phrase and word.    And then the chords started up for Silent Night and Deborah lifted her head, took a deep breath  and sang, her voice high and clear, a note of hope that swelled and filled the room, perfectly pitched above the desolation and chaos.    The rattling, banging, shouting all ceased;   even Harry halted his patrol and listened.  John leant forward and stroked Beryl’s face with the back of his hand.  I looked across at Marjorie, her worried frown had softened and at the corner of one eye a tear glistened , filled and slowly ran down her cheek.

How can any of us be sure? 

What bowels would not be angered

by what cannot be explained.

There may be no red flags, but you’re

drowning In unpredictable pain. 

.  

Just remember, life is a terminal illness 

and Medicine an inexact  science;

 an exercise in probability. 

In shadow and with occult blood,

the assassin flatters to deceive

.

So what’s the worst?  The surgeon,

Green in mask and gown,  

punctuates your abdomen,    

creates a semicolon, but don’t fret,

it’s not yet a full stop.

The carers leave notes for each other on the wall above the work surface in her kitchen.  The one this morning read,  ‘If the district nurse or any member of the family ask you to help them move Doris, you must say NO!’ 

I went through to the bedroom.  Mum was half lying, half sitting on pillows, wild eyed, without teeth, without hearing aids or glasses.  I was shocked.  I put her teeth and hearing aids in, put her glasses on and asked Rosina to help me get her up.  She looked scared and refused.  ‘I’m not allowed.’  So I manoeuvred mum out of bed onto the wheelchair and wheeled her into the sitting room and danced with her onto the sofa,  where we settled down and thumbed through old photos of Bristol.  When the next carer arrived, I asked if they would change her pad.  Rosina looked doubtful but Joanne said ‘of course.’    Afterwards, as she was going, Rosina told me there was faeces in it and they weren’t allowed to deal with solids. 

Later,  Cheryl rang from the office and told me she had talked to the rapid response dementia team, the district nurse, the physiotherapist and they were all of the opinion that mum had to go into hospital.  ‘It takes two carers to help Doris onto the commode or to change a pad.  And they cannot deal with solid matter’. 

I sighed, ‘Health and safety.’ 

‘Nick you would not believe how many regulations there are these days.’ 

‘I would, Cheryl, I would.  But the bottom line is that if mum goes into hospital, she will die, and I don’t want her to go like that.’ 

I had visions of her waiting around behind a curtain in Casualty for hours and then being going  to a crowded and noisy admissions ward.  So I announced: ‘Why don’t I be on call, Cheryl.  I can call in twice a day to lift her.’  

‘But, Nick, you will need to be in all the time –  even through the night.  You will not get any sleep.  And how are you going to deal with her if she is incontinent of faeces?’

‘Well, I will just have to be less squeamish.  Can’t we at least try it?’ 

Mum had rallied with me there that afternoon and I didn’t want to abandon her now.

‘No Nick, I really think we have come to the end of the line.’

It had all started after the fall.  The carer had left her alone in the bathroom and gone into the kitchen to make breakfast when she heard a crash.  The doctor decided she hadn’t broken anything, but thought she had a chest infection.  He prescribed oral morphine, which I withheld because I felt it would hasten a slide into hospital. 

But now there seemed no alternative, so I telephoned the GP and arranged for mum to be admitted to a private hospital over the weekend.  Four hours later and the ambulance still hadn’t arrived.  ‘Oh, it’s Friday night and they will be out on 999 calls.’  Mum was exhausted and sinking, so I dialled  999. 

‘Oh no, squire’, said the paramedic, who was built like a rugby player.  ‘Our rules are we have to take her to casualty at the Northern General and then they can take her to St Benedict’s after that.’ 

‘But she’s already got a bed in St Benedict’s.’ 

Eventually he agreed as a favour, but explained how much trouble he would get into if his supervisors knew.  ‘It’s not me squire.  It’s the regulations. You’ve just got to be so careful these days. But she’ll like it here.  They’ve got shower gel!    

St Benedict’s was quiet and peaceful.  Mum settled into a comfortable bed and went to sleep. 

The next day, they phoned me at 8.30am and requested a deposit of £2500.  I gave my credit card details and then asked to be put through to the ward. I was connected to the consultant, who explained with great grace that they had taken an Xray and would begin to mobilise her if there was not a fracture. 

But when I arrived, she was fast asleep and unresponsive.   They had not got her out of bed.  She had been incontinent overnight and she was not swallowing water.  

I talked to the sister. ‘We’re a busy ward.  There are surgical patients and children.  Your mum needs a lot of attention and it’s the weekend. I don’t have the staff.’ 

Can nobody help care for mum?  I have encouraged them to put up a drip and give IV fluids, they have catheterised her.  I know when meal times are and will go and try to get some of that delicious cottage pie down her. 

I suspect their attitude is to let her die with dignity.  That’s fine, but although she is 94,  mum’s heart is healthy and she is physically quite strong.  She needs the kind of 24 hour one on one attention the carers were giving her at home, but she will never get that in hospital.    In the meantime, they give her lovely food but she can’t feed herself,  they provide drink but she won’t drink it,  they prescribe mobilisation but the physio looks after the whole ward and doesn’t have the time to get her up on her feet and mum is too frightened. 

She’s now been in St Benedict’s for three days and there’s a change.  It’s like she has lost hold of her life.  When I arrived yesterday, she was slumped in a chair, desperate, pleading, ‘Oh please, oh, please Nick, pulling at the sheets on the bed, plucking at her drip, trying to sit up.  I put her hearing aid in and tried to communicate but when she responded, it was with half a sentence.  ‘I want to go …. Get me out ….. Nurses…… Toilet’ .   She recognised me, stared at me desperately before her eyes seemed to cloud and look away. 

I phoned the consultant.  ‘It will be a long haul to get her back to where she was before she came in, if she ever gets back.  Over the next few days, we will get her over the infection and try to encourage her to feed herself and walk, but I suspect this will take more time than we have got.   You will need to get her in to a nursing home.  

I guess mum had been on the brink for some time,  kept going by the constant round the clock attention of her carers.  It would only take a moment’s neglect; a fall plus the rigid application of  regulations and she was suddenly in a place where they couldn’t help.   I sense her terror.  I hold her and she quietens a little but as soon as I let go, she’s back in her own version of hell.   And what now?  She certainly can’t go back.  She will go to a nursing home.  They will keep her body alive , they will feed her, give her drinks, turn her, manage pressure sores.  I can only pray that her mind has  long gone by then,  she has released her fierce grip on life and resigned to oblivion.  

People say that the British have the best care system in the world.  It’s not true.  The boost in NHS funds may have enhanced the efficiency of health provision, but it has not improved care.  Care requires flexibility and compassion.  It takes human understanding to know how to work within the rules to provide what a patient needs.  All too often regulations lead to restriction and a withholding of care.    

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