The Harm That We Do.

Peter.

Peter's early childhood had been a little less than ordinary although it might have been considered ordinary at that time. Born in 1951, the second eldest son and the middle child of a brother and sister. Peter was an intelligent, reflective and a shy child, having just one good friend. He did not appear unhappy. He did well at school and at end of year exams was anywhere between first and third in a given subject. He was described by his teachers as intelligent, but it was noted he did not achieve his full potential. It was also noted that he did not appear to have many friends.

At puberty he showed the angst of many a teenager; hostile and argumentative; prone to episodes of self-doubt and anger brimming over to tearfulness and resentful of his parents. His parents were quite unprepared for this as, due to his calmness, inquisitiveness and apparent happiness, they had assumed he would sail through puberty unscathed.

As his teenage years progressed, he became increasingly troubled; his hostility towards his parents increased and any attempts (by them) to communicate with him were tantamount to entering into battle; he isolated himself in his bedroom and from his one true friend (who was becoming increasingly fearful of him); he was absent from school often; his siblings regarded him as 'odd' and due to the selfishness that often appears in teenage years - they excluded him from their lives; at times, but rarely, he would seek out his mother (for comfort) and cry for hours and voice fears that there 'was something wrong with him.'

He left school after failing all his GCEs. He did not attempt to find work and continued to exist almost entirely in his bedroom. He was now friendless. He began to accuse his parents of poisoning his food as he knew they were disappointed in him and that he would never live up to their expectations of him. He quickly began to lose weight and his parents could hear him crying and shouting in his locked room. It was at this time that his parents finally admitted to themselves that something was indeed wrong and they requested their GP to visit.

He was sectioned and hospitalised. His involuntary incarceration deepened his belief that his parents wanted rid of him. His fellow patients frightened him. Across time he began to trust his psychiatrist and opened up, telling of intrusive thoughts and voices and of a feeling of low self-worth. He stated that he was frightened of the demons that he felt lived within him.

He was diagnosed with schizophrenia and with careful titration of meds over several months - he eventually rediscovered some of the calmness of his early years. He was discharged and returned home. He remained (self) isolated and became an avid reader of all things religious.

As time passed by, he realised that He was the second coming of Christ. The proof (to him) was irrefutable; the attempts to demonise his mind by those who lived inside his head and taunted him; the fact that he felt no love or connection to his parents; the final proof was the clues he now saw all around him (ideas of reference) and that now he was receiving messages directly from God via his radio.

Careful and intelligent as he was, he kept this knowledge to himself. He knew that to save himself from a second crucifixion, he would have to resolve this matter alone. He also knew that he was being deliberately kept docile by the medication he received - and ceased to take it, as it was now obvious to him that the psychiatrist in whom he had held in complete trust was part of the conspiracy to silence him.

He gathered Jewish sounding names from the telephone directory and when alone in the house, would phone and taunt these unknown victims of his delusions, mouthing obscenities and telling that they would not crucify him again. He attempted to burn down a synagogue and was arrested and sectioned and spent many years in hospital.

He was never to return home again as his parents could not deal with the stress of attempting to cope with him. His siblings were embarrassed by him and angry at him for the anguish he caused their parents and disowned him.

He became a revolving door patient, existing either in hospital or rented accommodation, sometimes doss houses. He required high dose maintenance to control his symptoms. He became totally reliant on doctors, holding their opinions in high esteem. He was intelligent enough to have thoroughly acquainted himself with an in-depth knowledge of his schizophrenia and at times, utilised this knowledge when feeling depressed to gain (false) entry to hospital to fulfil his need to talk to doctors.

During his last hospitalisation he was rediagnosed with schizo-affective disorder due to his mood disorder and intermittent depression. It was felt that it would be wise for Peter to be discharged into a care home setting where he could be monitored and hopefully feel safe. Peter agreed to this.

Peter was forty-nine when he entered the care home. Although he would talk at times to fellow residents - he was unable to gain their friendship. He was well liked by staff who availed themselves whenever he wished to discuss any topic - but when experiencing delusional thoughts, he would not enter into conversation as they were not doctors. He regularly saw his psychiatrist who was happy with Peters placement and noted some improvement in his condition.

Sometimes he expressed his anger at being in a care home as he regarded it as a prison and staff would talk through his need to be there. Accompanied by staff, Peter would attend football matches, the theatre and restaurants and occasionally an aunt who maintained limited contact.

He still believed that he was a reincarnation of Christ and would at times refuse his medication, viewing it as an attempt to poison his mind and that they (the staff) wanted him dead. His symptoms would intensify and it required a GP visit to put this to right. His TV and radio would be removed, whenever requested, when he felt the 'demons' were trying to infiltrate his mind. Staff knew him and accommodated him.

During his five years at the home he had never required hospitalisation.

The End Of Life Care Strategy.

Dr Nice was indeed a very nice man and a very good doctor. He was favoured by many patients on his practice list and it was a rare occasion for there to be a gap in his daily appointments. At times he would have welcomed the occasional break - but his patients came first.

He, like all GPs in his area, had been contacted by his PCT and invited to take part in its End Of Life Care Strategy aimed at local care homes. He offered himself forward as a Link GP who would be assigned to a particular care home after study days and a meeting of all concerned.

The meeting was attended by GPs, organisations and nurses involved in palliative care, representatives from care homes and other interested individuals. Overall it was a good meeting and most homes readily agreed to take part in the project. A few hummed and hared, voicing fears that discussing Advance Decisions to Refuse Treatment (ADRT) with their particular client group would be detrimental to the clients well-being; or it would break the trust they enjoyed with their residents; or they questioned the need for it. Dr Nice was a little alarmed about the hostility shown towards those who expressed concerns.

Dr Nice had been assigned one of these homes as a Link GP. Two months had passed and he had not received any completed ADRTs, so he phoned the home and arranged a meeting with the manager.

Mrs. I Know My Residents (the manager) had a long discussion with Dr Nice re ADRTs and the sudden need for them. She expressed concerns that with an ADRT in place, hospitalised residents - particularly if they were elderly - might not receive life sustaining treatment . She also expressed concerns that discussing end of life care with particular residents might impact on their well-being and she mentioned Peter.

Dr Nice nodded thoughtfully; after due consideration, he concluded that residents would receive more patient centred care with an ADRT in place; he also concluded that Peter had the same rights as everyone else to determine his end of life care. Mrs. IKMR acknowledged in her thoughts that Dr Nice was a very nice man - but wondered what planet he was living on.

Mrs. IKMRs declared that she accepted Dr Nice's opinion, but that she did not want her staff to conduct these interviews, as they enjoyed trusting and therapeutic relationships with the resident group. Dr Nice took this on board and requested that appointments could be made with three residents (including Peter) the following Monday and he would begin discussions re ADRTs. Mrs. IKMR reluctantly agreed (fearing that non-compliance would be viewed negatively with the CQC, GPs, hospitals and the local authority and referrals might dry up).

Peter was informed that Dr Nice would visit him on Monday to discuss any thoughts he might have about his care if he became seriously ill. Peter was thrilled as this was an unrequested visit and he felt that at long last he was being taken seriously.

That Monday, Peter was introduced to Dr Nice and a staff member was also present. Peter spoke quickly to Dr Nice, expressing his delusional thoughts at great length and Dr Nice responded appropriately.

After some time, and when he felt the time was right, Dr Nice began to (sensitively) discuss his own agenda. Peter was horrified, his implicit trust in the medical profession destroyed as he sought to make sense of what he had just heard; for it appeared to him that his doctors now wanted him dead too and were asking him to take part in the plan. He exploded into a wild rage and Dr Nice desperately attempted to rescue the situation. But the damage was done.

Peter, point blank - from that moment forth - refused all medication as he now knew it was poisoned. His mental health deteriorated rapidly and he was sectioned and hospitalised four days later. He has now been an in-patient for seven months.

But the box has been ticked!

"Thispolicy driven in the UK despite a weak evidence base." paper describes the protocol of a multidisciplinary study that will provide timely and essential insights into an area of end of life care, ACP, which has become

This quote can be found in the last paragraph of "Background" - not Abstract! The red highlights are mine

Anna G.