Tuesday, June 19, 2012

Anorexia Nervosa & The Law: Tube Feed or Not!

Given the interests in how the law should be used in cases of Anorexia Nervosa, I am putting on the Blog my Chapter in my book: The Cockroach Catcher.

         "This is the Captain again. I hope you have enjoyed the view of St. Lucia. It is unusual to have so little cloud.  Anyway, in seven minutes we shall be able to come into view of Barbados.  We should be coming in from the north side where you will be able to see Port St Charles. Then we shall go round the west coast. With any luck you will be able to see Sandy Lane, the best hotel in the world. So, in seven minutes. Barbados. The temperature in Barbados: 83 degrees Fahrenheit, with scattered clouds.

         In seven minutes I would start my life of leisure in this Paradise Island in the sun.

         Seven minutes.

         Seven minute cure.  My famous seven minute cure. It was the making of me at the Adolescent Inpatient Unit. It was the pinnacle of my career. The most defining seven minutes in my career. 

         And Candy really helped me launch myself into it.

         “It is our view that clinically it was wrong for Candy to be transferred at this stage. It was wrong for the NHS to accept her back and in our view Candy is in serious risk of – quite frankly – dying.”

         Those were more or less the words said at the transfer meeting by the nurse from the private hospital where Candy had been for the past eighteen months. She had been compulsorily detained twice and she had been put on Olanzapine.  Olanzapine is one of a new group of drugs licensed for Schizophrenia and has been found to induce a voracious appetite especially the bingeing of carbohydrates. Some psychiatrists have started using it for this specific effect. In Candy’s case she managed to fight the biochemical effect of Olanzapine.[1]

         Candy was just two days free of tube-feeding, which apparently was the only way to get her weight to a less frightening level.

         Ethics in medicine has of course changed because money is now involved and big money too. What was in dispute in this case was that the private health insurance that sustained Candy through the last eighteen months had dried out. The private hospital then tried to get the NHS to continue to pay for the service on the ground that Candy’s life would otherwise be in danger. The cost was around seven hundred pounds a night.  Some would argue: since we as a state hospital would not be getting the money, why should we take the risk?  After all, the consultant in charge would be in the dock if the patient did die.  Nowadays, patients and their families are trigger happy and complain even if the patient becomes better. God help us if they die. 

         I argued the case in the opposite fashion. We shall help the authorities without precondition and who knows, I may be able to get them to give us something when the time is right. 

         Cynics at the unit looked at me as if I had just dropped off another planet. Get something out of the Health Authority? When were you born?

         A quick calculation gave me a figure of over a quarter of a million pounds per year at the private hospital.  No wonder they were not happy to have her transferred out.  Before my taking up the post, there were at one time seven patients placed by the Health Authorities at the same private hospital. Not all of them for Anorexia Nervosa, but Anorexia Nervosa required the longest stay and drained the most money from any Health Authority. I have seen private clinics springing up for the sole purpose of admitting anorectic patients and nobody else. It is a multi-million pound business. Some of these clinics even managed to get into broadsheet Sunday supplements.  I think Anorexia Nervosa Clinics are fast acquiring the status of private Rehab Centres. Until the government legislates to prevent health insurers from not funding long term psychiatric cases, Health Authorities all over the country will continue to pick up the tabs for such costly treatments.

         The poor nurse did not realise what hit her. That was my first week. I am never threatened. I like the challenge of difficult cases and definitive statements like – the patient will die.  I like to prove it otherwise.

         The nurse concerned was not naïve either. Far from it. She based her judgement not on what she knew about me. It was only my first week after all. 

         No, she based her judgement on her knowledge of the unit, as she used to work here. She was once its lead nurse. Alas, poor pay and bad conditions coupled with the deteriorating consultant leadership prompted her to jump ship. I could not blame her for that. 

         The unit went through a difficult phase until the last consultant was finally suspended. Even before that, other consultants started refusing to refer patients here, and the two main Health Authorities that the clinic served had to fund ECRs (Extra Contractual Referrals in the then re-organised Health Service lingo) to mainly private hospitals.

         Then the unit had a locum and the operation was scaled down drastically. Bed availability dropped to less than half the normal capacity and the waiting list for admission grew. Unlike elective surgery, some patients in psychiatry cannot wait. Beds had to be found and often they were placed with adult psychiatric patients. It was not ideal even for the psychotics and certainly inappropriate for Anorexia Nervosa. Private Hospitals had to be used.

         My first task as the new consultant in charge was to ask the Charge Nurse what would limit our ability to admit to full capacity.

         “Your time,” was his reply.

         So we aimed to move to full capacity, not overnight but within the following three months. The shock on the faces of the managers as this was announced at a meeting gave me such an adrenaline rush.  

         Or, did they think, “What a fool!”

         Fool or no fool, one needs to enjoy one’s work, even in the NHS.

         This perhaps is one thing that the government has conveniently forgotten. Many of us do what we do because we enjoy it. Otherwise why should anyone want to teach in universities when they can earn ten or twenty times more in industry? We may also decide to dedicate more time to work for personal pride and satisfaction. During the few years I worked at the inpatient units I spent in excess of a hundred hours a week there, one man doing the job of at least two.  In addition to that, I was still looking after two outpatient clinics. 

         With increased capacity, we were ready to take on transfers. At that time the Health Authorities still had decent managers not yet blinded by directives and performance targets. For a start these managers did not interfere with clinical matters. For our part we were free to exercise our clinical judgment.  Unfortunately many consultants abuse this privilege of clinical independence, often making excessive demands for treatments and investigations, and managers have learnt to ignore them.  Worse the government set up this organisation called NICE (National Institute for Health and Clinical Excellence) to try to deal with such behaviour.  

         “It is our view that clinically it was wrong for Candy to be transferred at this stage. It was wrong for the NHS to accept her back and in our view Candy is in serious risk of – quite frankly – dying.”  

         The nurse was probably unwise to make such a declaration, as my mind was already made up to take on Candy regardless. 

         What if the private hospital did not exist?  It would have been down to us then. So to me that was no big deal. After all, most private hospitals are notorious for transferring their dying patients to NHS hospitals so as not to mess up their pristine mortality figures. What was so different here?

         “Shall we meet the family?” I said, trying to break the ice.

         There had of course been a pre-visit by our Charge Nurse and his team.

          “This one is difficult and I think you may have a problem with father.”

         Candy led the three-some. She gave me such a look as if to say, “Wait till I give you all the trouble.”  She looked out of the window for the rest of the time. Mother was warm but worn. Eighteen months had taken its toll and she was gracious enough to be pleased to meet me. Father on the other hand seemed to show some anxiety. In fact, he was a quite a powerful negotiator, and had managed to persuade the insurers to agree to extend the private medical care for another six weeks on a shared cost basis, either with the parents or with the Health Authority.  He was still quite keen on the private treatment, and was half hoping that I would refuse to take Candy on clinical grounds and then the Health Authority would pick up the bill from then on.

         To be fair, eighteen months was a long time even for Anorexia Nervosa.  Perhaps someone else should have a go.  NICE had not yet come up with a standard treatment and I certainly would challenge them to do so. Tube feed everybody?  That would be the day.

         Mother was more intuitive and I think she got the measure of me very quickly. “Darling, perhaps we should give Candy a new start. The new doctor might work in a different way.”

         “It is the nurses that did most of the work.” A final and desperate attempt by the nurse from the private hospital to set the record straight was missed by the nervous family. The rest of the world still looked up to the consultant, perhaps not for much longer but until Armageddon, I was going to enjoy it.

         “I will give it my best shot.”

         So on a rather unusually beautiful sunny Tuesday morning, we received a soon to be dead Anorexia Nervosa patient who had been abandoned by her insurer to the unsafe NHS. 

         What a challenge! Some of those at the meeting must have considered that I was delusional.   

         I believed that money should not be part of the consideration for the best health care and I was determined to make sure that my delusions should remain true for me.  I had to maintain a good service in my little corner of the NHS.

         Perhaps I was able to capture mother’s heart and gain her confidence through mine. She decided that they should give us a try.

         Do I tube feed her straightaway or do I wait?

         I am no coward. So let us wait.

         Adolescent units are notorious for making life difficult for authority figures. This is perhaps due to severe professional rivalry. To most of the nursing staff, the only difference between the psychiatrist and them is that the psychiatrist is licensed to prescribe.  If a patient is not on medication a psychiatrist would barely be needed. Over time various mechanisms have been introduced to minimize the input of the psychiatrist even when he is supposed to be in charge. Many psychiatrists gave up the fight a long time ago just to survive. A patient’s stay in hospital involves a large number of multidisciplinary meetings that often lead to half-baked treatment plans that have little hope of success.  Surprises are unwelcome and generally discouraged. 

         I have found this kind of “consensus” approach a serious problem.  It is simply not my style.  Perhaps one of the reasons I stayed as an outpatient consultant all these years was to continue to enjoy the independence from such approach.

         Now all eyes were on me. 

         On that Tuesday I felt as though the whole unit was putting me through a trial. It was like living through a reality show.  Everybody was watching me, and I would have to deliver or perish.  My reputation, the reputation of an alien psychiatrist, was at stake. I needed to act fast and I did not have eighteen months. Otherwise I would be packing and leaving this jungle, house or whatever reality show I was in. 

         Apart from true madness, Anorexia is the only condition where one can use the Mental Health Act to detain and if necessary force feed against the patient’s wishes, although little is known about how effective this aspect of our law is.  There is still a rather high mortality rate, even in acknowledged centres of excellence like the Maudsley[2]. Tube feeding does not seem to be saving lives.  It also hurts our pride if we have to succumb to tube-feeding.  It means that we have failed as psychiatrists.

         Then I remembered my own golden rule about parenting. When all else fails, try bribery.  And that is what I did, but not with Candy.

         Any nurse that could get Candy to start eating would get three bottles of nice wine or two cases of beer.  It might not be strictly against the rule, but I am sure a few eyebrows were raised.  Candy refused to eat or even drink.

         I had to be in London for a Royal College meeting that Friday.  My mobile rang. Day 4: Candy was still refusing to eat or drink. 

         “No tube feeding, just check her blood chemistry” was what I decided should be done.  People do not die so easily even with committed fasting. We had got time, and nobody was going to get my wine or beer, I told myself.

         By Sunday, there was a major concern that Candy, having not eaten for five days, might be at some risk.  A quick electrolyte check showed normal sodium and potassium levels.  I left instructions again not to jump up and down and worry too much.  I was quite sure she must have been secretly drinking, perhaps not from her own jug. Often other patients would “help”, not quite comprehending how their “help” might indeed be a “hindrance”.  I have even seen nurses “helping” to dispose of patient’s food or even eat it. Anorexia stirs up funny emotions.

         By the time I got in on Monday, Sophie, Candy’s nurse said to me, “I think you had better see Candy. There has been no change at all.”  This was in some ways quite unusual as most of the time the consultant in charge only gets involved in family meetings and reviews that are pre-planned. Junior doctors deal with the day to day checking on patients.  Perhaps she was somehow hoping that I would give in and put Candy back on tube-feeding. 

         I think if there had been a NICE guideline[3], I might not have been given this chance.  Instead some on-call doctor over the weekend would have put her on tube-feeding as per protocol. After all, that had been her mode of feeding for weeks. 

         We would use the law if and when it became necessary.

         However, that would have defeated the whole point, as she would have been stuck with the old ways forever.  

         Stubborn patients deserve stubborn doctors.

         Candy came in.
         “Aren’t you going to tube feed me?”
         “Then I will die.”
         “So I will be very sad but we do not tube feed here.”  At least I don’t.
         “You can’t do that.  I want to be discharged.”
         These are more or less verbatim reports. My mind was racing fast trying to come up with an answer.
         “I want to be discharged!”
         “Candy, it is actually possible.”
         I can still remember the look of horror on Sophie’s face: “Is this doctor for real?”
         “You mean discharged today?”
         “Yes. I mean today.”
         I could see Sophie was in complete shock. “What planet did this consultant drop out of and how is he going to pull this one off?”
         “Well. If you start off by drinking one carton of Ensure Plus and some squash, then eat your lunch and have another Ensure Plus in the afternoon, you will be discharged home and you can come back daily.”

         When I used this case in my teaching sessions with junior doctors, they invariably showed incredulity that I offered this to Candy just like that, without consulting her parents or her nurse.  I knew that if there had been any discussion it would never have happened. There would have been objections from somewhere.  That is the trouble with consensus.

         But you see, it was important for Candy to know that I had authority. Many adolescent units have gone too far the other way, and they really are a reflection of dysfunctional families where the adolescent rules the roost.  A totally democratic approach will never produce the thunderbolt and deliver the sustainable therapeutic effect.

         A strange bond was developing between me and Candy. I gave her a way out and she would oblige.  I had no doubt at all she would be compliant.
         Sophie then went to fetch exactly what I told Candy she needed to 
consume. When Sophie came back, the drinks went down in seconds.  I could see the relief and disbelief in Sophie’s eyes.
         That took seven minutes.
         And now the real work began: the details.  I told Candy she would be discharged as an inpatient and would need to come in every day as a day-patient. A trick you might say.
         She did not object.
         She never expected to be discharged in her state. The important thing was that I took control. For her it was a relief. She never protested that I perhaps tricked her. It too was a relief for her to have something in her stomach.  What was more important was I saved her face and she, mine.
         I was to stay on in the show.
         How could I justify sending a fragile fasting patient home on the first day of resumption of eating?
         For five days we achieved nothing when she was in hospital.
         What about the parents?
         In fact I phoned mother in front of Candy straight away.  I played a trick on her. I just said, “Candy is coming home.” A long silence indicated how shocked she was. Then I told her of our seven minutes.
         “I knew you could do something.  That was what I told my husband, but I did not know it was going to be this quick. I did tell him you were OK.”
         You can wait for years for a case like this. It is like a hole-in-one. You just know the moment the ball leaves the tee. With one such case, I could now put up with anything anyone cared to throw at me. 
         At least for a while.
         To Candy, it was like a heart transplant. She had been stuck for too long and was probably pleased to get out. Hospital was not like home and she had not been home for a long long time. 
         So where is Candy now?
         She was eventually discharged to attend a state school but that did not work. She eventually went to an agricultural college where she worked mainly with horses and did extremely well. Her weight was well maintained. That took another fourteen months.
         But she remained a day patient throughout except for a long weekend when her parents went away for their anniversary. At Candy’s request, she stayed in the hospital that weekend.

[1] Olanzapine – (Zyprexa-Lilly) Anti-psychotic drug. Eli Lilly agreed on Jan. 4, 2007 to pay up to $500 million to settle 18,000 lawsuits from people who claimed they had developed diabetes or other diseases after taking the drug. Lilly denied any wrongdoing. In its statement, Lilly said the settlement did not change its view that Zyprexa is a safe and effective treatment for mental illness.
   Lilly’s internal documents show that in Lilly's clinical trials, 16 percent of people taking Zyprexa gained more than 66 pounds after a year on the drug, a far higher figure than the company disclosed to doctors.
   Olanzapine-induced weight gain may be secondary to excessive ingestion of food due probably to an inability to increase plasma glucose and leptin following a glucose challenge.
   The F.D.A. added a warning in 2003 to the label of Zyprexa and other new antipsychotic drugs about their tendency to cause high blood sugar.  

[2] Anorexia mortality: http://bjp.rcpsych.org/cgi/content/abstract/175/2/147
Anorexia nervosa is a mental disorder with a high long-term mortality. Detained patients gained as much weight during admission as voluntary patients, but took longer. More deaths among compulsory than voluntary patients (10/79 v. 2/78) were found 5.7 years (mean) after admission. CONCLUSIONS: Compulsory treatment is effective in the short term. The higher long-term mortality in the detained patients is due to selection factors associated with an intractable illness.
The British Journal of Psychiatry 175: 147-153 (1999)
© 1999 The Royal College of Psychiatrists.

[3] NICE guidelines for eating disorders were not issued until January 2004, some years after this case.

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1 comment:

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Feeding tubes that pass through the nose to the stomach are not commonly used, since they may discourage a return to normal eating habits and because many patients interpret their use as punishing forced feeding. However, for patients who are at significant risk or for those who refuse to eat, tube feeding through the nose or through a tube inserted through the abdomen into the stomach can help with weight gain and improve the nutritional status of the patient.