The Let Me Decide Pilot Implementation project Final Report Centre for Gerontology & Rehabilitation 1

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1 The Let Me Decide Pilot Implementation project The effect of simultaneous implementation of an advance care directive and a general palliative care educational programme on end-of-life care in a long-term care setting Final Report December 2014 Centre for Gerontology & Rehabilitation UCC School of Medicine St. Finbarr s Hospital, Cork. 1 P a g e

2 Executive Summary Introduction This report document outlines the execution of a pilot study which involved the implementation of an advance care planning (ACP) programme using the Let Me Decide (LMD) advance care directive (ACD), combined with a general palliative care (PC) educational programme in longterm care. The report is divided into three parts. Part 1 is the contextualisation of the project. This is where the literature is reviewed in relation to advance care directives, legal standing, palliative care interventions and relevant policy documents. Part 2 describes the content and process of implementation of the programme, along with findings from the evaluation of the implementation process, such as uptake of end of life care planning and challenges encountered. Part 3 presents the findings of the impact of the programme on the delivery of end-of-life care from both a qualitative and quantitative perspective. The report also outlines strategies for wider implementation of the programme and concludes with practice and policy recommendations. A number of proposed activities outlined for this project, which was funded by a grant from the Irish Hospice Foundation, were extensive. Project Activities To refine an advance care planning program using the advance care directive Let Me Decide for use in the Irish long term care setting. This includes refinement of the associated: o Policies o Training o Education material To implement the Let Me Decide program in LTC. To explore ways to communicate and make end-of-life care decisions for those with diminished capacity to make an advance care plan. To refine, develop and implement a clinical palliative care training program for use in the LTC setting To assess the effect of implementation of the program To assess the training and resources needed to initiate and maintain the operation and viability of this program. To provide information on how this program could be successfully disseminated nationally in a way that ensures its sustainability. As with any project, issues and challenges arose. In most instances these were addressed without significantly affecting the scope of 2 P a g e

3 the project. However some issues such as the HSE South s embargo on the use of the Liverpool Care Pathway (or adaptations of it) lead to some change to the original project remit. The project was also adapted slightly so that it better complemented other initiatives in Palliative Care and Older persons in Ireland such as: The National Clinical Programme for Older People The National Clinical Programme for Palliative Care The Palliative Care Competence Framework, an AIIHPC, IAPC, HSE and IHF joint initiative. In the first phase of this project, staff training was completed on advance care planning and palliative care in all of the participating nursing homes and community hospitals. Attention to staff feedback helped refine and adapt the programme for use in this setting. Implementing an ACP programme into LTC settings presents many challenges for both management and nursing staff. Releasing staff for training is a considerable challenge both practically and financially for many LTC homes and for their staff. One of the main factors which staff felt would prevent them from attending training were: the location (they wanted it to be local), the time of the workshop (in particular if it was on their day off or interfered with commitments outside of work such as family life) and potential loss of pay. This feedback received both verbally and from staff questionnaires triggered the development of an e-learning program to facilitate training in Palliative Care and separately in advance care planning using the Let Me Decide program. The high prevalence of cognitive decline in the LTC population underlined the need to include the assessment of resident capacity as a key step in the completion of a valid ACD. Where residents lacked capacity to complete an ACD, families were encouraged to engage with healthcare staff in discussing end-of-life care (EOL) choices to help inform the completion of an EOL decisions care plan by the medical team for the incapacitated resident. Where possible, the resident was included in these discussions. The program has been well received by both residents and their families. Following implementation, over 50% of residents had some form of end-oflife care plan in place (advance care directives; advance care plans; or end-of-life care plans for those with diminished capacity). Despite the high prevalence of cognitive impairment, at least 10% of residents had capacity to complete their own advance care directive. Of 70 residents who died during 3 P a g e

4 the study period, 84% had an endof-life care plan in place (12% of these were advance care directives). On the basis of challenges identified in this Implementation project, key recommendations for the effective implementation of ACP in LTC settings were developed: Recommendations o Deliver a comprehensive ACP and palliative care education package to LTC staff using a blended approach, based on the Palliative Care Competence Framework and learning needs of staff o Implement a comprehensive policy on ACP, tailored to each nursing home s individual requirements o Provide a structured ACP process for staff to follow o Clarify who is responsible for different aspects of the ACP process o Provide staff member(s) with specialist training to act as ACP facilitators and provide protected time for engagement in ACP o Provide appropriate educational material for residents and families (culturally-sensitive, appropriate literacy level, large print versions, bitesized chunks) o Include education of GPs as part of programme implementation o Promote open communication between nursing staff, residents, families and doctors o Design systems within the nursing home so that ACD/ACP forms are accessible and all staff are aware of their existence and content o Provide information to outof-hours doctors, emergency ambulance services, and local hospital emergency departments on the ACP programme o Promote communication and collaboration between LTC staff, GPs (including out-of-hours), emergency ambulance services and specialist Palliative Care doctors o Ensure ACD/ACP forms are easily interpretable by different groups of HCPs o Design systems for seamless transfer of ACP information between different healthcare settings o Implement quality assurance systems in place in the nursing home o Allow time for embedding. Although it may be too late for many long-term care residents to complete their own ACD, the Let Me Decide programme includes an option for structured end-of-life 4 P a g e

5 care planning for residents lacking capacity (to complete an ACD), which involves discussions with the resident, where possible, and the family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in terms of improved communication and enhanced peace of mind among all parties involved, became apparent in practice. The program has been well received by staff. Results from focus groups indicate that all the homes have now embedded the programme as part of their care packages. In fact many have stated that the programme has transcended a number of care issues in the home and is much more than just a directive. Relationships with residents have deepened, there is a more open and honest environment with family, end of life care is now focused on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict. One director of nursing even stated that staff morale has improved as a result of the programme. It was unanimous that the programme should be rolled out to other care homes and all agreed that they would now not want to practice as healthcare professionals without it. In terms of ensuring the sustainability and dissemination of the program to a national and potentially international level, various recommendations are made which include; education/training of staff on advance care planning and palliative care approach, MDT approach to end of life care, documentation of conversations with residents & family on wishes and preferences, providing external support to nursing homes, and introducing the concept of advance care planning on admission to long term care. Conclusion While delivering advance care planning to elderly LTC residents is both challenging and time consuming, this appears to be offset by the benefits in relation to promoting patient autonomy, bringing peace of mind to staff and families, improving communication between residents, their families and healthcare staff and increasing staff knowledge of palliative care approaches. The LMD-ACP programme offers a systematic approach to the implementation of ACP in combination with palliative care staff education in residential aged care settings, which has been demonstrated to enhance end of life care and maintain high standards of quality surrounding dying and death. 5 P a g e