PREFERRED PRIORITIES FOR CARE An end of life care tool CATHRYN GREAVES June 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 1 st and 3 rd easy….ISH 2 nd 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 had a PPC in place 6 achieved their 1 st choice of preferred place 2 achieved their 2 nd 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 bht.nhs.uk