Sunday, 16 September 2012

Is The End Of Life Patient Charter Dead Then?

I was first made aware of the launch of the End of Life Patient Charter last June via the excellent Pulse and it too was reported widely in the media – please read this article in The Guardian.

The EOL Patient Charter is a collaboration between the End of Life Care (EOLC) English Working Group of the RCGP with the RCN and the Patient Partnership Group and its aim is laudable in that it seeks to ensure that patients nearing the end of their life receive and expect an ideal of best practice  from their GP and Primary Health Care Team.

The EOL Care Charter reads as follows:

“We want to offer people who are nearing the end of their life the highest quality of care and support. We wish to help you live as well as you can, for as long as you can. Therefore, if and when you want us to, we will:

• Listen to your wishes about the remainder of your life, including your final days and hours, answer as best we can any questions that you have and provide you with the information that you feel you need.

• Help you think ahead so as to identify the choices that you may face, assist you to record your decisions and do our best to ensure that your wishes are fulfilled, wherever possible, by all those who offer you care and support.

• Talk with you and the people who are important to you about your future needs. We will do this as often as you feel the need, so that you can all understand and prepare for everything that is likely to happen.

• Endeavor to ensure clear written communication of your needs and wishes to those who offer you care and support both within and outside of our surgery hours.

• Do our utmost to ensure that your remaining days and nights are as comfortable as possible, and that you receive all the particular specialist care and emotional and spiritual support that you need.

• Do all we can to help you preserve your independence, dignity and sense of personal control throughout the course of your illness.

• Support the people who are important to you, both as you approach the end of your life and during their bereavement.

We also invite your ideas and suggestions as to how we can improve the care and support that we deliver to you, the people who are important to you and others in similar situations.”

A letter from the RCGP was forwarded to all GP practices with the intention that they and other primary health care teams would ‘sign up’, discuss with care homes (and provide supportive training), display a poster on the waiting room wall, discuss with patient groups and also patients receiving palliative care (and their relatives) and that patients and relatives should receive a copy of the Charter.

Erm, it hasn’t happened.   Search Pulse and it is impossible to find one article as none are archived.  I did watch two videos there – one in which Dr Clare Gerada stated that GPs were best placed to initiate conversation re the Charter in care homes as they ‘know the patient best.’    Mmmmh, maybe in London Dr Gerada – but certainly not in my neck of the woods!

It is possible to find stuff on GP (online) but not much and I have never seen said Charter displayed at a GP surgery – and I do visit quite a few with our residents.

On the launch of the charter Dr Gerada stated "Care seems to break down at the very end. So often a GP has looked after someone really well, and then they are not there."

The reason for this post, two of our residents have recently died with a terminal illness and I feel strongly they would have welcomed interest in their situation from their GPs – but it was not forthcoming.  Not sure they would have welcomed their own copy of the Charter though – I certainly wouldn’t as to me it (in the format offered) would be akin to receiving a ‘Well Done, You’re Dying!’ certificate…

Is the End of Life Patient Charter alive anywhere?

Anna :o]


Hilary Melton-Butcher said...

Hi Anna - having seen some of the care provided for my uncle and then my mother ... people don't fully understand ... and it's all so personal, and essential that the family understand too - not just the patient.

We have a Liverpool Care Plan - and other things at the Nursing Centre - but they're not right either .. on the way, but not thoughtful or aware enough ..

Our last doctor was superb .. cheers Hilary

Friko said...

I have a question: Why the F..k is it necessary for a special charter to ensure that patients at the end of their life receive such care. What is the matter with us? Isn't it common decency and fellow-feeling and humanity to deal with people as kindly and with as much care and consideration as we can?

What next? A charter to tell all of us, not just the professionals, how to be mindful of others at all times?

Dave King said...

A friend of mine was given all this near the end, but it seemed to take the place of the physical care he and his family were hoping for.

hyperCRYPTICal said...

Thank you for your welcome comments folks

Hilary It is essential that all (the patient and the family) understand and feel supported
by the medical profession and sadly the support is lacking in some instances.

I don’t know – perhaps it is a nursing home thing in that some GPs believe their input is not required as nursing staff are there to meet the needs of the residents…but residents and relatives do notice the absence of GPs and talk of it. It is not enough to have an Advance Directive in place and leave it at that…

Friko Agree with you entirely. Sadly it appears (to me) that death has become a protocol and not a natural end to life, for as long as the paperwork is completed, the boxes ticked then the job is seen to be done and to hell with compassion and caring…

Dave Well it is good to know that the EOL Patient Charter is alive and kicking somewhere but as you rightly say its purpose is not of that to take away and deny physical (and spiritual) care – it is to ensure it happens!

Anna :o]

Stafford Ray said...

I do think such a charter is necessary. Friko is right that care and consideration should be at the forefront of care, but I have seen my mother in tears simply because her attempts to summon help to get to the toilet were ignored by overstretched staff. So although not incontinent, she eventually had to let go and soaked her bed.
I had to be a one man 'charter' on her behalf and did, so it never happened again. But not all old people have an advocate to speak for them.

hyperCRYPTICal said...

Stafford Sadly it appears that a charter is necessary in that death has become a protocol and not a natural event.

However (for what I can see) this charter is meaningless as it is not followed and therefore patients are deniend the compassion, the presence of those who should care - paperwork or not - and be seen to care as it is the right thing to do.

Anna :o]

Anonymous said...

well said and very sad state of affairs. Bravo for writing this