Please read this article in the Colchester Daily Gazette. It details a row that has erupted after Colchester PCT advised care homes not to automatically dial emergency services when a resident is dying.
I presume care homes in Colchester have become involved in the national drive to 'sign-up' en masse residents to Advance Decision to Refuse Treatment (ADRT).
Residents and relatives of those residents not deemed to have mental capacity are being coerced by Link GPs and indeed care homes (who wish to proudly boast they have achieved Gold Standard) to Advance Care Planning.
It has happened in my area with devastating results, many residents being highly offended and highly confused by this unrequested approach and relatives feeling pressured into making decisions they do not want to make.
What really concerns me about this article is that the family of Ellen Williams seem unclear as to exactly what they have signed, believing that she has been "put on the Liverpool Care Pathway "do not resucistate" plan." What is this? Clearly from the article she (Ellen) is not "on" the LCP - but clearly, her future (lack of treatment) is well mapped out.
I can only assume that the link GP discusssed placing Ellen on the LCP when she is in the process of dying and during this discussion the family requested or agreed to Do Not Attempt Resuscitation (DNAR).
However, it is important to state that DNAR decisions only apply to CPR (cardiac massage and artificial respiration) and not to any other aspect of treatment - such as comfort measures: antibiotics, analgesia, hydration and feeding (any route), oxygen, hospital admission and suction. DNAR does not mean Do Not Treat (DNT).
Four residents in my home have ADRTs in place - three requested by relatives when their loved one was 'in the process of dying' and the fourth when the GP requested to see the relatives for the same reason. All have a DNAR in place, relatives have requested no hospitisation for two of these residents and all relatives have requested active treatment should their loved ones become ill. All of these residents are still alive!
So the question needs to be asked that if the GPs were wrong in these instances why nurses are deemed to have the skill of recognising 'dying' when it suits a PCT. If I am concerned about the health of a resident - something which can't wait until a GP visit in the morning - I phone Out Of Hours (OOH) Services and often, when giving details I am informed that I should contact emergency services - because they can't be arsed to come out! If I felt emergency services were required I would have done this.
Of the four residents mentioned previously, if thought required, I would contact emergency services for two of them. The remainder I would contact OOH. Nursing home nurses are between a rock and a hard place - with regards to requesting GP input - they are damned if they do and damned if they don't! I will not take risks with a residents life - I am not a doctor. Woe betide me if I sat by and did nothing should a resident become critically ill - I am a hundred percent certain no PCT or GP would back me up! I would be hung, drawn and quartered!
I am concerned re Dr Shane Gordons statement, feeling he has totally missed the point that there is a lack of clarity, a lack of understanding of Advance Care Planning and an unawareness of the ramifications of signing same.
I wonder if he has read "This paper desribes 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 policy driven within the UK despite a weak evidence base."
Advance/Anticipatory Planning (formerly Living Wills) is fine and dandy if it is a choice you make yourself. If I had a terminal illness - I would request and sign one myself. Okay dementia is terminal, but it is not a tomorrow thing. Until it reaches end-stage you have a right to treatment.
We all get old some day - even doctors and those who manage PCTs.
Anna :o]
Showing posts with label ADRT. Show all posts
Showing posts with label ADRT. Show all posts
Thursday, 28 April 2011
Thursday, 16 September 2010
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.
Saturday, 10 July 2010
ANTICIPATORY CARE PLANNING (PART TWO) or
'How people die remains in the memory of those who live on.'
Dame Cicely Saunders, founder of the Modern Hospice Movement.
Part two considers aspects of the content of The Department of Healths End of Life Care Strategy. It is far too lengthy a document to condense down all the information in it, therefore I have selected points which I consider salient.
I would recommend you read it in its entirety and you will need to download End of Life Care Strategy (PDF, 781K) at http://www.dh.gov.uk/
Personal observations are written in red.
End of Life Care Strategy.
Chapter 1: The challenge of end of life care.
1.29 The main aims of the NHS End of Life Care Programme were:
The above it itself appears laudable; an opportunity to plan future care at end of life - but it worries the hell out of me and why will become clear in this and future posts.
Chapter 3: The end of life care pathway.
Trajectories of decline at the end of life.
3.3
Group two who experience 'episodes of acute ill health from which they may, or may not recover.' This statement implies that life or death outcomes may be very much dependent on severity and treatment. ADRT in place - no treatment = death! No chance to recover!
Group three: little gran with a RTI and in difficulty, but could recover. ADRT in place - no treatment = death! Dementia comes in many forms and consider X who is forty-nine and has pre-senile dementia. Consider Y who has another form of dementia and is thirty-six, and whose condition will remain stable for the rest of his/her natural lifespan. Both have a moderate amount of memory loss and associated apathy - but continue to operate at a level where their life still has obvious quality. Whatever condition they may present with in the future - I am not talking end-stage illness here - requiring treatment to sustain life; they will be denied it if an ADRT is in place. They will have signed their own death warrants.
Rant over! I did intend to write more - but I think this is enough.
Part three will cover Mental Capacity and the Mental Capacity Act 2005.
Anna G.
Dame Cicely Saunders, founder of the Modern Hospice Movement.
Part two considers aspects of the content of The Department of Healths End of Life Care Strategy. It is far too lengthy a document to condense down all the information in it, therefore I have selected points which I consider salient.
I would recommend you read it in its entirety and you will need to download End of Life Care Strategy (PDF, 781K) at http://www.dh.gov.uk/
Personal observations are written in red.
End of Life Care Strategy.
Chapter 1: The challenge of end of life care.
1.29 The main aims of the NHS End of Life Care Programme were:
- To encourage local adoption and development of end of life care models to address the needs of the local population, in particularly the Gold Standard Framework (GSF), Liverpool Care Pathway for the Dying Patient (LCP) and Preferred Priorities for Care (PPC) see chapters 3 and 4; and
- To encourage Care Homes in improving end of life care. though adaptions of these models (see chapter4).
The above it itself appears laudable; an opportunity to plan future care at end of life - but it worries the hell out of me and why will become clear in this and future posts.
Chapter 3: The end of life care pathway.
Trajectories of decline at the end of life.
3.3
- Some people with long term health conditions remain in reasonably good health until shortly before their death, with a steep decline in the last few weeks or months of life. Others will experience a more gradual decline, interspersed with episode of acute ill health from which they may, or may not recover. A third group are very frail for months or years before death, with a steady progressive decline.
- These three patterns or trajectories are illustrated in Figure 1. Some authors have suggested that the first pattern may be typical of cancer, the second may be typical for people with organ failure (e.g. those with heart failure or chronic obstructive pulmonary disease), and the third may be typical for people with dementia.
Group two who experience 'episodes of acute ill health from which they may, or may not recover.' This statement implies that life or death outcomes may be very much dependent on severity and treatment. ADRT in place - no treatment = death! No chance to recover!
Group three: little gran with a RTI and in difficulty, but could recover. ADRT in place - no treatment = death! Dementia comes in many forms and consider X who is forty-nine and has pre-senile dementia. Consider Y who has another form of dementia and is thirty-six, and whose condition will remain stable for the rest of his/her natural lifespan. Both have a moderate amount of memory loss and associated apathy - but continue to operate at a level where their life still has obvious quality. Whatever condition they may present with in the future - I am not talking end-stage illness here - requiring treatment to sustain life; they will be denied it if an ADRT is in place. They will have signed their own death warrants.
Rant over! I did intend to write more - but I think this is enough.
Part three will cover Mental Capacity and the Mental Capacity Act 2005.
Anna G.
Sunday, 4 July 2010
ANTICIPATORY CARE PLANNING (PART ONE) or....
FIRST THEY WOULDN'T COME FOR THE ELDERLY,
BUT I DID NOTHING BECAUSE I WASN'T ELDERLY.
At the beginning of the twentieth century, the period of life expectancy at birth was around 48.5 for males and 50.4 for females.
The period of life expectancy at birth in the United Kingdom, as per the United Nations (2005-2010) is now 77.2 years for males and 81.6 years for females.
With advances in medicine and a resulting reduction in infant mortality; availability of treatment; better diets and decreased poverty - people are living longer.
According to http://www.statistics.gov.uk/ there were 20 million people aged fifty and over in the UK in 2003. This was a 45% increase from 13.8 million in 1951. The projected increase by 2031 is a further 36%, with an estimated 27.2 million aged fifty and over.
An aging population equals a higher propensity to long term medical conditions - many of whom don't realise that some of these conditions are terminal. However - again according to government statistics - consider themselves to be in good health, even if they have a long term illness that restricts their daily activities.
Unfortunately, an aging population is regarded as a burden on the state. Despite the fact that they contributed to the system - they were not expected to live so long, and therefore - to take so much out of it.
It has therefore become necessary to initiate culling strategies. First there came the Liverpool Care Pathway (LCP) - which I am sure was formulated with the best on intentions (and I will blog about it on a later date) - and now there is the push towards Advance Decisions to Refuse Treatment (ADRT). As stated - both devised with the best of intentions - but both are wide open to abuse.
A number of my colleagues recently attended a PCT meeting re Care Planning at the End of Life. Its secondary title was "Anticipatory Care Planning in Care Homes." Its prime aim is to enforce as a requirement, the implementation of ADRT.
" ************* Care Homes Project.
The....................................................................................................education.
The project has three main strands:
The whole affair is quite scary and we fear that it is a further nail in the coffins of the elderly. When we first had experience of the LCP - we thought it a wonderful, caring thing that enabled the dying a pain free release. Now we can state (with an almost 95% degree of certainty) which residents admitted to hospital (GP initiation) with a RTI, will return home to us and who will be placed on the LCP! This knowledge is not based on the fact that we know that resident A is sicker than resident B; it is dependant on the support system of their NOK primarily and other known factors.
More to follow.......
Anna G.
BUT I DID NOTHING BECAUSE I WASN'T ELDERLY.
At the beginning of the twentieth century, the period of life expectancy at birth was around 48.5 for males and 50.4 for females.
The period of life expectancy at birth in the United Kingdom, as per the United Nations (2005-2010) is now 77.2 years for males and 81.6 years for females.
With advances in medicine and a resulting reduction in infant mortality; availability of treatment; better diets and decreased poverty - people are living longer.
According to http://www.statistics.gov.uk/ there were 20 million people aged fifty and over in the UK in 2003. This was a 45% increase from 13.8 million in 1951. The projected increase by 2031 is a further 36%, with an estimated 27.2 million aged fifty and over.
An aging population equals a higher propensity to long term medical conditions - many of whom don't realise that some of these conditions are terminal. However - again according to government statistics - consider themselves to be in good health, even if they have a long term illness that restricts their daily activities.
Unfortunately, an aging population is regarded as a burden on the state. Despite the fact that they contributed to the system - they were not expected to live so long, and therefore - to take so much out of it.
It has therefore become necessary to initiate culling strategies. First there came the Liverpool Care Pathway (LCP) - which I am sure was formulated with the best on intentions (and I will blog about it on a later date) - and now there is the push towards Advance Decisions to Refuse Treatment (ADRT). As stated - both devised with the best of intentions - but both are wide open to abuse.
A number of my colleagues recently attended a PCT meeting re Care Planning at the End of Life. Its secondary title was "Anticipatory Care Planning in Care Homes." Its prime aim is to enforce as a requirement, the implementation of ADRT.
" ************* Care Homes Project.
The....................................................................................................education.
The project has three main strands:
- Link GPs - the development of a Link GP role whereby a dedicated GP is contracted to work with each participating care home. The role is to support the care home in the implementation of clinical policies and procedures and to support and encourage the home to adopt clinical guidelines that are discussed during educational sessions
- Educational Programme - eight sessions over the course of twelve months, designed for care home staff and the Link GPs. The meetings will include anticipatory care planning, end of life care, falls and osteoporosis, COPD, chest infections, UTIs, nutrition and wound care.
- Anticipatory Care Planning - Link GPs will work with patients in care homes to develop anticipatory care plans in association with their families and care home staff."
The whole affair is quite scary and we fear that it is a further nail in the coffins of the elderly. When we first had experience of the LCP - we thought it a wonderful, caring thing that enabled the dying a pain free release. Now we can state (with an almost 95% degree of certainty) which residents admitted to hospital (GP initiation) with a RTI, will return home to us and who will be placed on the LCP! This knowledge is not based on the fact that we know that resident A is sicker than resident B; it is dependant on the support system of their NOK primarily and other known factors.
More to follow.......
Anna G.
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