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.