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:

• 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 NHS End of Life Care Programme has exceeded its aims in every setting. However coverage levels for January 2008 shows much more needs to be done.

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.

3.4

• 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.

Now this is where I become more worried. I am thinking especially of groups two and three who have an ADRT in place.
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.

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:

1. 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
2. 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.
3. 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 above may appear quite a breakthrough - GPs actually wanting to work with care homes (!) - but it is not!

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.