PREFERRED PRIORITIES FOR CARE

An end of life care tool

CATHRYN GREAVESJune 2010

Haemodialysis in Kendal

Nurse led unit Recently extended and refurbished Will have 17 HD stations

HD Facilities for 68 patients (59 at present) Patients range in age from 33 to 89 years Median age 68 years (UK median 64.5) Multiple co-morbidities in our patients

Dying on Dialysis

About 30% of our Kendal HD patients die each year

Most die in hospital often a long way from home Commonest cause of death is cardiovascular We are rarely surprised when one of our patients

dies Often the surprise is that the patient has survived

so long! Most of the time we can predict who is likely to die

End of Life Care

I identified a need for better care for our patients at the end of their lives

In the words of John Reid, Secretary of State for Health in 2005 in the NSF

‘we aim to support people with established renal failure live life as fully as possible and enable them to die with dignity in a setting of their own choice’

How did it all start?

Nothing formal in place at Kendal or anywhere for dialysis patients that I knew of in 2007

I identified a need to discuss end of life issues with our patients

Started better discussions on a need to basis with patients

Heard about the PPC and decided to adopt the tool for dialysis patients

Obstacles

Discussions with staff highlighted a great resistance……. Fear!

“You can’t tell a patient they are dying!” With the support of the Manager, I enlisted

the help of a Dr and a CSW. Our End - of- Life team was formed

Now to set to and devise a plan to implement the PPC

The plan:

Felt that it was important to introduce it to every patient

Personal approach Spend time with each patient Forms given out with a supporting letter to

take home

What is a PPC ?

A care plan Not a legal document Patient held An introduction to the CONVERSATION! Communication document

What does it consist of ?

Three questions

1st and 3rd easy….ISH

2nd can be massive!

Who is it aimed at ?

You could say anyone

But someone who has an E-O-L illness

Definition:- any organ failure

Dementia - early stages

Cancer

MND and Parkinsons to name a few.

Who can implement it?

Anyone who feels confident and comfortable discussing end of life issues.

BUT Must have some communication skills

training Leads should have Advance communications

skills training Sage and Thyme or equivalent for others

Completing the PPC

Best option is for the patient to complete it with their relatives etc.

You can complete it BUT in their words.

Give the Lions Message in a bottle out also

What then ?

The more people who know what the patients wishes are - the more chance they have of having them fulfilled.

GP, DN’s, Macmillan, Carers, Consultants, Specialist nurses, Social Workers and family members.

Emphasis on no guarantees. Keep it in a safe place and take into hospital. Update, review as needed.

Does it work ?

Yes We have to work on a culture change of our

perceptions around death and dying and that of today's society.

We plan so much for life's beginning why not for life’s end?

The more we do this…the more it will become the norm.

Death Data:

28 deaths from Jan 2007 – Jan 2010 10 had a PPC in place 6 achieved their 1st choice of preferred place 2 achieved their 2nd choice of preferred place 2 did not achieve their preferred place due to

acute episodes in hospital i.e. cardiac arrest 4 were in the process of completing PPC

2 of these patients died at home

Death Data:

4 were unable due to mental capacity issues 10 had refused the PPC Looking at roughly 50 – 50 refusal and

uptake 80% of people who had a PPC in place died in a

place of their choice and were involved in all the decisions made around their end of life.

Current Data:

59 dialysis patients 17 have PPC in place 14 are in the process of completing a PPC 4 have refused 6 ? around their capacity (looking into Best

interest) 18 to be offered the PPC

Continue to evolve and improve end of life care offered to patients

Case Study

Patient A Transferred Renal failure due to Myeloma Palliative team already involved PPC introduced Subdued at first

Outcome…

Case Study

Patient B Over 20yrs on dialysis Very open from introduction Family support

Outcome…

Case Study

Patient C ? Capacity initially Bad news re sister Offered PPC

Outcome…

AND FINALLY……

Thank you for listening

Cathryn Greaves

PPC Coordinator UHMBT

Cathryn.A.Greaves@mbht.nhs.uk