Advance Care Planning (ACP) has been a key action for the Cwm Taf UHB Palliative & End of Life Care Delivery Group. An ACP Annual Report is presented annually to this group and it is acknowledged that ACP helps improve peoples’ satisfaction with care received at the end of life, through ensuring that preferences and choices are expressed and adhered to wherever appropriate and possible.
Two WTE Band 7 Macmillan Clinical Nurse Specialists (CNS) for Advance Care Planning were initially employed by Cwm Taf UHB from July 2014 funded by Macmillan Cancer Support on a fixed term 3 year basis (now ended). The specialist nurse facilitating Record of Best Interest Decisions for advance care planning when the person has lost capacity (18.5 hours) would now sit within this service. These project posts would incorporate awareness raising and a training function to establish and embed the process of ACP as part of multi-disciplinary team working, across secondary care, community care and the independent sector nursing and care homes. Key roles were identified as:-
- To promote ACP and raise awareness throughout CTUHB
- Explore current ACP practice
- To identify ACP learning needs of staff throughout the Health Board and to lead, coordinate and provide a training programme for health professionals including care home staff, monitoring training needs across the Health Board facilitating a change in practice.
- To facilitate an increase in numbers of patients dying in their preferred place of choice.
- To work towards a decrease in avoidable end of life hospital admissions and progress towards optimal use of care homes in the provision of end of life care.
- To work alongside the Record of Best Interests Decisions (RBID) Nurse, Macmillan GP facilitators and Macmillan Highly Specialised SLT to support patients and their families to have the opportunity to undertake advance care planning and to facilitate discussions as required.
- To gather evidence and benchmark against other services to identify the role of Specialist Nurses within advance care planning. To initiate the development of guidance to inform future practice.
- To work alongside the Record of Best Interests Decisions (RBID) Nurse and Macmillan GP facilitators to raise awareness and promote advance care planning in Cwm Taf.
Education / Training / Support
The Macmillan ACP CNS’s undertook a training education and support function which was provided to 1182 health and social care staff over a 2 year period (Sep 14 – Sep 16). Training has been provided to care home staff, pre-registration students, return to Practice Nurses, GP and Practice Managers, Speech and Language Therapists, District Nurses, Specialist Nurses, Hospital Teams, Social Services and Mental Health Services.
Macmillan ACP CNS’s evolved into becoming the key clinician to be undertaking the advance care planning process in many instances. It has become clear that on occasions the skills required for such complex discussions with patients and families is best vested in staff who undertake this task on a regular basis and have the time and skill to work with individuals and families. The staff received 476 referrals for direct intervention (Sept 14- Sept 16)
Preferred Place of Death
Through Advance Care Planning Cwm Taf UHB have enabled more people to express their preference for where they would wish to receive their final end of life care and wherever possible have been able to achieve their wish. Of the 132 individuals know to the ACP Nurses who have died (Sep 14 – Sep 16) with an Advance Care Plan in place, 111 (84%) died in their preferred place of death.
Many patients with an identified primary diagnosis, such as dementia, have other significant diagnoses, for example Parkinson’s Disease therefore these are identified as multiple illnesses in our data. Our analysis of referrals has identified a significantly smaller number of individuals whose primary diagnosis is cardiac or respiratory disease. Literature supports the difficulties of prognostication in these groups of patients and that end of life conversations are infrequently explored (Janssen et al. 2012). The initial focus for the project (and previous RBID service) was on care home education/ provision which may explain the higher percentage of referrals for people with dementia (mainly RBID’s).
Since January 2016 there has been a steady increase in ACP referrals for individuals with capacity. We suspect this is a result of ongoing ACP education throughout the entire health board in addition to interest from senior clinicians of the benefits of ACP. The establishment of strong links with disease specific teams including CNS’ for Multiple Sclerosis, Parkinson’s disease, dementia, heart failure, transitions palliative care and care of the elderly has also led to facilitation of discussions with patients, joint working and shared learning. The ACP team continue to work closely with the ‘@ Home Services’ fostering continued joint working to support care home residents to be cared for in their preferred place of care at end of life.
- Macmillan ACP CNS’s attended and presented at the Multiple Sclerosis All Wales Educational event in Cardiff and the South Wales Heart Failure CNS Educational event in Swansea.
- Qualitative feedback from patient/carers and patient stories were also undertaken and qualitative feedback following education sessions was collated.
- Actively involved in planning for Byw Nawr’s events within the Health Board annually.
- Involvement in developing all Wales Advance Care Planning DVD resource for all health care professionals.
- There have been a number of successful poster presentation including at the Advance Care Planning Conference in Munich, Chief Nursing Officer for Wales Conference at the All Wales National Palliative Care Conference.
- The Clinical Audit and Effectiveness Department carried out an ACP Nursing Home Staff Survey in 2016.
- Since 2013 Cwm Taf has seen a 2.3% decrease in the number of patients dying in hospital and a 2% increase in the number dying in their own home.
- Macmillan GP facilitators have been appointed.
- Macmillan Highly Specialist Speech and Language Therapist (Advance Care Planning) Kate Paterson has demonstrated positive impact on:
- Number of individuals identified who benefit from ACP/RBID discussions and subsequently the numbers referred to the ACP CNS team and complete ACP documentation.
- Quality/ Validity of documented preferences and wishes surrounding dysphagia-related management (including non-oral feeding vs. feeding at risk decisions and interventions and place of care for aspiration-related infections).
- Ensuring that all practical measures are taken to enable patients to make decisions for themselves (in line with the Mental Capacity Act 2005), by offering specialist skills for communication and capacity assessments in relation to advance care planning.
- Following the completion of the two project posts outlined above on a fixed term basis Cwm Taf UHB employed a Band 7 Advance Care Planning Facilitator from December 2017.
- Talking Mats Project, a social enterprise whose vision is to improve the lives of people with communication difficulties, and those close to them, by increasing their capacity to communicate effectively about things that matter to them and plan their future care
- Anticipatory Prescribing and TEPS
- Cwm Taf HB have developed an all Wales ACP/Conservative management renal group with the aim of intruding ACP and improving conservative care for renal patients in Wales. We held our first national meeting on the 20th September. (Gail Williams, Welsh Renal Clinical Network Lead Nurse, 3a Caerphilly Business Park, Caerphilly, CF83 3ED)