1. Betsi Cadwaladr University Health Board July 2015 Supporting the Spirit of Life: Planning for your Death Ros Johnstone All-Wales End of Life Care Programme Manager Betsi Cadwaladr University Health Board

2. Betsi Cadwaladr University Health Board July 2015 Life Events

3. Betsi Cadwaladr University Health Board July 2015 Ignoring the Inevitable

4. Betsi Cadwaladr University Health Board July 2015 Wishes & Preferences

5. Betsi Cadwaladr University Health Board July 2015 Planning for the Inevitable

6. Betsi Cadwaladr University Health Board July 2015 Advance Care Plan (ACP) What is it ? Who is it for ? What are the benefits ? Is there any evidence-base for ACP ?

7. Betsi Cadwaladr University Health Board July 2015 Tentative evidence from the literature: Positive benefit for patients, family and carers. Can reduce admissions to hospital for end of life care. Promotes patient autonomy. Need more studies to support the evidence base underpinning ACP.

8. Betsi Cadwaladr University Health Board July 2015 ACP Models

9. Betsi Cadwaladr University Health Board July 2015 Advance Decision to Refuse Treatment (ADRT) Advance Care Plan: Formally drawn up and documented when the patient is deemed to have capacity, it is a patient-held record of wishes and preferences for future care should the patient become unable to speak for their self. Shared with those important to the patient. Patient’s wishes and preferences, informal and often verbal only, not properly documented, or shared with those important to the patient. USA: Durable Power of Attorney for Health Care DPOAHC UK: Lasting Power of Attorney (LPA) 2 parts: Health & Welfare Property & Finance Costs Money to Arrange and Register with Office of Public Guardian USA : ‘Values History’, ‘Living Wills’. USA: Instructional Advance Directives

10. Implementing ACP Betsi Cadwaladr University Health Board July 2015

11. “Betsi Cadwaladr University Health Board is the largest health organisation in Wales, providing a full range of primary, community, mental health and acute hospital services for a population of around 676,000 people across the six principal areas of North Wales.”

12. Betsi Cadwaladr University Health Board July 2015 Patient Held Record Shared with those important to the patient. Documents wishes and preferences Details health issues. Contains legal advice concerning lasting power of attorney (LPA), advance directive to refuse treatment (ADRT). Highlights internet perspective, digitally stored photographs and password protected access to accounts. Includes what to do after my death.

13. Betsi Cadwaladr University Health Board July 2015 Roll out Initially through Hospice Day Care. Develop Disease-Specific modules for use with core document. Renal Failure, COPD etc. Offer the model to other 6 Health Boards across Wales.

14. Betsi Cadwaladr University Health Board July 2015 Myths “You need to be terminally ill to draw up an ACP.” “ I don’t have any particular preferences.” “Talking about your death hastens your end.”

15. Betsi Cadwaladr University Health Board July 2015 Barriers

16. Betsi Cadwaladr University Health Board July 2015 Overcoming barriers End of life care is everybody’s business Raising awareness of death and dying Talking about end of life Sharing with those important to you Making a cultural shift

17. Betsi Cadwaladr University Health Board July 2015

18. Thank you E-mail rosalynde.johnstone@wales.nhs.uk