1. Advanced/Anticipatory Care Planning in Care Homes Dr Erna Haraldsdottir Strathcarron Hospice

2. Advance Care Planning (ACP) Advance Care Planning – “…is a process of discussion in which individuals, their care providers and often those close to them, make decisions with respect to future health or personal and practical matters of care” Advance Care Planning (SLWG3) Living and Dying Well 2009

3. Components of ACP Legal - a will or advance decision related to refusal of medical treatment Personal - preferred place of death/advance statement Medical - advance decisions

4. Why ACP in Care Homes ? Increasing impetus on autonomy and choice in Government Health and Social Policy Documents specific to the Care Home setting End of Life Care for People with Dementia 2009 (England) Making Good Care Better 2006 (Scottish Executive/SPPC) Living and Dying Well 2008 section (point 34 p 14/ action 15) Better Care Every Step of the Way. Report on the quality of palliative and end of life care in care homes for adults and older people Care Commission April 2009 One way to achieve patient-centred care and maintain patient autonomy is to elicit their health values and preferences before they lose their ability to state those preferences One of five deaths occurs in care homes

5. ACP training in Care Homes funded by NES One day ACP Study Day designed and delivered in March 2010 in three Geographical areas Grangemouth, Edinburgh, Glasgow for senior staff in Care Homes. 150 participants attended one of the 3 days.

6. Programme consisted of: Power point presentations – ACP in the context of current health care delivery – What is ACP ? key component, how is it done? who does it? Interactive workshops – Exploring participants’ experience and perception of ACP in own practice – Monologues – Case studies to demonstrate the use of ACP in practice.

7. ACP in Care Homes current practice, challenges and benefits Participants were asked to consider 3 questions in relation to ACP in order to gather their experience, provide the opportunity to share this experience as well as discussing the benefits and challenges of ACP.

8. What is your experience/role in relation to ACP? Very little or no experience I am the designated person who approaches residents and discusses with them issues related to ACP Some stated they had done APC once and others stated they were doing ACP as part of the care plan and in relation to LCP.

9. Current practice of ACP Currently include ACP plan into care plans on admission and review regularly. In the process of including ACP into the care plan. Actively progressing the palliative care approach within the care home including preparing resident and family for death and documenting wishes but would not label it as ACP. Lack of ACP planning and end of life care still being led by crisis and discussion and formal planning could be improved in the care homes setting. Indication that current care plan was not suitable for inclusion of ACP and needed to be changed.

10. Current practice of ACP cont. Concerns around not knowing the legal status of ACP document as part of care plan for a resident Document in place but not filled out properly Using DNR forms LCP When the resident was in the care home setting it was already too late for ACP discussion to happen and this needs to be done prior to admission to the care home. Further training is needed for successful implementation of ACP and LCP.

11. GPs’ involvement Support from local GP practices varied GP involvement is essential.

12. Benefits of ACP Enhance communication and increase the quality of the care, allowing resident to state their wishes leading to increased autonomy and control over their care and dignified care at end of life Decrease anxiety and distress for staff, resident and the family ACP enhances teamwork, inter discipline communication Increase staff confidence when providing end of life care Leads to better job satisfaction by staff when providing end of life care as a result of increased confidence and good team working Enhance family involvement in the care and help families in their grieving process.

13. Challenges of ACP Involves sensitive discussion needing advanced communication skills – Communication challenges included: How and when to start ACP discussion Resident and family being reluctant to discuss issues related to death and dying and this being a taboo subject Cognitive impairment of the residence Conflicting views within the family.

14. Challenges of ACP cont. Lack of clarity about legal and medical status of ACP Documentation Environmental issues Lack of private rooms for the discussion to take place in. Residents and family members need to be informed about the ACP process and its purpose if it were to be implemented systematically into a care home. Successful implementation of ACP required adequate resources and training opportunities for all staff.

15. Benefits and challenges of ACP in Care Homes Feedback from participants regarding the potential benefits and challenges of ACP in health care was reflective of the research in this area demonstrating the challenges of implementing ACP in the Care Home setting (Froggatt et al 2009).

16. Participants’ Evaluation of the Study Day

17. Participants’ comments about the Study Day Helped to clarify specific issues related to ACP – Legal issues – How and when to start ACP discussion and issues related to documentation. Provided the opportunity to reflect specifically on issues related to implementation of ACP in own clinical area, including challenges to the implementation and how to go about these Enhanced understanding of the benefits of ACP and how they felt the day had enthused and motivated them in relation to implementing ACP in their own clinical setting Participants also commented positively on the opportunity to network and share experience.

18. ACP Feedback from the participants endorses research evidence highlighting the need to ensure that all levels of staff are appropriately trained and supported to undertake the implementation of ACP (Froggatt et al 2009).

19. Participants said as a result of the study day they would… Now have increased commitment to making ACP part of their own practice and to be proactive in developing ACP within their own clinical area. Be more confident and able to have ACP discussion with their residents and family members and would take the time to do so. Have discussions with other members of staff within their service about ACP both informally and through formal meetings including speaking to their local GPs and district nurses as well as service managers..

20. Participants said as a result of the study day they would… Teach ACP to other members of staff through in- house training sessions and look for further external training opportunities Review their documentation and include ACP discussion into their current Care Plan Advocate that ACP would be implemented routinely in their workplace and would consider ways of informing residents and their families about ACP in general.

21. Influencing change within practice Many of the participants felt that they would be in a position to influence implementation of ACP in their work place, reflecting that 59% of participants were in a managerial role. Ways of influencing practice were identified as: – offering in-house training – seeking external training opportunities – cascading information both informally and formally through meetings – role modelling ACP – communicating with local GP practices and local specialist Palliative Care services to gain support – informing residents and families about ACP

22. Further support needed Further education – more Awareness Raising Study Days followed by regular updates Awareness raising and training for GPs – their support was deemed vital for successful implementation Networking – sharing of experience and knowledge Access to education material was seen as supportive – participants intended to make use of the web resource designed to support the Awareness Raising Study Days.

23. The team who designed, delivered and organised the training Dr Erna Haraldsdottir, Head of Education Jackie Higgins, Lecturer in Palliative Care Pam Clark, Lecturer in Palliative Care Dr Fiona Downs, Consultant in Palliative Medicine Dr Gill Foster, Associate Specialist in Palliative Medicine Gail Allan, Community Clinical Nurse Specialist in Palliative Care Lesley Whitelaw, Deputy Matron Catherine Haggerty, Education Administrator Fiona Mulvany, Hospice Secretary Doreen Mullen, Hospice Secretary Mari Alcorn, ITIM Manager

24. We wish to thank Liz Travers, NES Education Project Manager Susan Polding-Clyde, Nurse Consultant for Older People in Care Homes David Rennie, Private Care Sector Workforce Initiative Manager The participants who attended these events and shared their ACP experiences, anxieties and hopes for the future

25. References Froggatt K, Vaughan S, Bernard C, and Wild D (2009) Advanced care planning in care homes for older people an English perspective Palliative Medicine 23 332-338 Living and Dying Well; A national action plan for palliative and end of life care in Scotland, Scottish Government Publication, 2008 http://www.scotland.gov.uk/Resource/Doc/239823/0066155.pdf The Development and Delivery of an Education Event and Education Resource to Support the Implementation of Advance/Anticipatory Care Planning in Generalist Care Setting. Strathcarron Hospice/NHS Education for Scotland, February 2010 Web Resource; http://www.strathcarronhospice.org/education.html

26. Workshop Task ACP, in all health care settings has been endorsed by the Scottish Government Steps should be taken to ensure that patients in care homes benefit from this approach (Scottish Government 2008) Implementing ACP in Care Homes – What opportunities does ACP offer Care Homes? – What are the challenges in implementing ACP in Care Homes and how can these be addressed ? – What elements will facilitate implementation of ACP in Care Homes?