Electronic Record of Advance Care Plan and Future Care Plans

Work is being undertaken at End Of Life Care board level to develop a specification for an Advance and Future Care Plan record. There is widespread support amongst clinicians for an electronic record of future/advance care plans in Wales, to improve access to patients’ wishes in a timely and efficient manner. 

The ultimate aim is for an electronic record that: 

(1) allows paper or electronic future/advance care plans which already exist to be uploaded as scanned or electronic documents (converted to non-editable PDF document) 

(2) enables an e-Form to record future/advance care plan information 

(3) includes wishes/plans about CPR 

(4) allows direct access by patients to write and submit their own advance care plan 

It should: 

• require specific and explicit consent from the patient (or equivalent permission by those making a best interests decision) for the record to be shared 
• be readily accessible to all healthcare professionals (who have valid clinical reason), in a timely manner, and in all relevant settings across Wales 

Considerable work is being undertaken by Dr Ian Back, garnering feedback from Palliative Care Implementation Group, Advance Care Planning Clinical Champions, NWIS, End Of Life Care board and charities.

Serious Illness Conversations Cymru

Serious Illness Conversation (SIC) Cymru project was launched in December 2016. SIC Cymru is an ‘all Wales’ project supported by funding from the Welsh Government End of Life board. The main aim of the project was to start to develop a sustainable strategy for delivering serious illness conversation training to healthcare professionals and support staff in Wales. 

The project recognised that it is not solely the role of one person within a healthcare team to provide patients and/or their relatives with the opportunity to participate in serious illness conversations but rather it is duty of all members of the team, whether within primary, secondary or tertiary care settings and irrespective of role within a team i.e. it is the role of healthcare assistants, porters, prison officers, chaplains, doctors, specialist nurses and ward staff, among others, to work within their competency to facilitate serious illness conversations. The project sought to improve healthcare teams’ confidence and competence in facilitating and delivering serious illness conversations and in so doing encourage patients and relatives to be more involved in decisions regarding their healthcare such as treatment options, potential outcomes, place of care and death etc. The project taught a ‘toolkit’ for serious illness communication supported by a breaking bad news strategy that would be immediately clinically applicable to front line staff throughout healthcare. The communication skills toolkit used had been written by the clinical lead for the project, Dr Nikki Pease (with co-author Baroness Professor Ilora Finlay), and taught both nationally and internationally

Outcomes (Dec 2016 – June 2018)

Face-to-face teaching 

• 20 teaching sessions (4 hours) with 520 NHS/HMP staff in receipt of serious illness conversation training. (Table 1)
• 1 Teaching session co-facilitated in London, at the request of London ambulance.
• A further 6 shortened versions of the teaching sessions were delivered at a conferences which saw a further 408 attendees receive Serious Illness Conversation teaching (Table 2). 

Profession (All Wales)	Attendees
Paramedics	368 (22)*
Specialist Nurses in Organ Donations/Clinical Leads in Organ Donation/ITU staff	83
Prison staff	46
Nurses	45
Total	542 (22)

Table 1 Professional taught the full training (* 22 London ambulance staff).

Profession (All Wales) conferences/ meetings	Attendees
Therapist (OT/Physio) (C&V)	40
Lung cancer conference	98
Breast cancer nurses	92
Various Healthcare staff	98
Cancer Clinical Nurse Specialists	23
Trainees in Obstetrics and Gynae	32
Total	383

Table 2 Professionals who attended shorter teaching 

Formal feedback looking at individual’s role and self-scoring pre and post SIC teaching have been collected, the outcome of this will be reported at a later date. Anecdotal feedback has been positive with one paramedic e-mailing in after a shift. 

‘Hi – just home from a clinical shift today in which I attended an end of life care patient, the first one I’ve been to armed with the communication training. I cannot tell you how helpful it was. The patient’s wife hadn’t realised how poorly he was, so I had that ‘difficult conversation’. It really did go similar to the role play in the CPD event’.

Welsh Ambulance Service Trust (WAST) appointed an End of Life (EoL) Clinical lead – Mr Ed O’Brian. Such an appointment was key in taking forward the SIC Cymru project within WAST. The project will continue with ongoing support and further teaching sessions being planned.  Nikki Pease, Velindre Cancer Centre