Supporting decision making on goals of care for community-dwelling patients living with a progressive life-limiting illness
Advance care planning, community, conversations that matter, decision making, goals of care
There are an increasing number of people living in the community with life-limiting illnesses however there is a lack of advance care planning for patients living in the community. Advance Care Planning involves having conversations about what matters to patients/caregivers if their health/health of a loved one gets worse.
Community nurses can play a key role in starting these conversations however many are hesitant about engaging in end-of-life conversations. Education to help understanding and provide the skills to support and encourage these discussions is needed if community nurses are to develop this role in the care of patients and family carers.
“Necessary Discussions” is an education tool – developed by our research team – to provide skills and knowledge to support care home staff to have advance care planning conversations during COVID (https://covidacpcarehomes.com). This tool was developed by a review of the existing research and input from experts with experience in this research area – this helped inform the resource content. A communications company helped create the ‘Necessary Discussions’ website design/layout. ‘Necessary discussions’ was evaluated in 8 care homes and was positively received with staff feeling they had permission to carry out these conversations and reporting they had started to have advance care planning conversations as a result of the training.
Building on this, the study team plan to ‘scale out’ the ‘Necessary Discussions’ tool by adapting its content and extending its reach in the community sector through the development of our advance care planning digital intervention. This will support community nurses to engage in these conversations and will also improve patient and families understanding on the advance care planning process which will help with meaningful shared decision-making between nurses/patients/caregivers during these discussions.
The aim of this project is to support conversations on goals of care at the end-of-life for community-based patients and families, ensuring what matters most to the patient is known. To do this, we will develop an advance care planning digital education tool for patients, family carers, and community nurses in the UK.
There are two key phases to the study:
Phase 1: We will organise four workshops (with up to 20 patients / family carers and 20 community nurses) to help us adapt the ‘necessary discussions’ resource and change the content and design to make the new tool more appropriate to a community nursing setting. We will have individual discussions (with up to 12 people who take part in the workshops) to discuss their individual experiences of these conversations and support needs. The ‘Necessary Discussions’ tool will be adapted based on the information collected during this phase.
Phase 2: The study team will recruit 60 community nurses and 60 patients/family members from across the UK to complete a survey to review the new tool and evaluate its usefulness in improving knowledge and skill in this area, considering its ease of use and acceptability etc. During phase 2 the research team will also interview 6-7 community nurses and 6-7 patients/family carers to find out how the tool has impacted knowledge and attitudes towards advanced care planning conversations and get their opinion on content, design and usability or the resource etc.
It is expected the digital education tool will improve understanding of these important conversations among patients and families, help decision-making and end-of-life support, improve communication of health care needs, knowledge of completing end-of-life discussions, improve community nurses ability to assess patient needs and promote the delivery of advance care planning in community nursing.
We have designed the study to ensure public, patient and personal involvement throughout the project. This includes the design, management and completion of the research project and the sharing of study findings.
Idea generation: during the development of our previous project ‘Necessary Discussions’ (which developed an education tool to provide skills to support advanced care planning conversations in care homes during COVID (https://covidacpcarehomes.com/)), PPI involvement identified the importance of the current project and the need to extend the education tool into the home care/community nursing sector – which is the focus of this current project.
The research team has set up an expert reference group, which includes 7 people receiving care and family carers. This group will provide advice on all aspects of the project including:
The study has clearly identified that among people with SMI in Ireland, a significant proportion are identified as having serious physical health conditions including cardiovascular, respiratory and diabetes related disorders and of those a considerable proportion require palliative care. Almost half of GPs (47%), and 56.3% of psychiatrists surveyed agreed that patients with a diagnosed SMI were less likely to have their palliative care needs identified compared to patients without a mental illness. Respondents also overwhelmingly agreed (Psychiatrists 90%; GPs 82%) that people with SMI are more likely to have physical health conditions overlooked than other patients. What is evident from this study is that people with SMI are disadvantaged as they are less likely to raise concerns about their physical health needs, to have health needs identified, or to access or to be offered palliative care. Findings from this study also portrayed the physical health care system as resistant to accepting people with SMI into the acute services. Interviewed participants identified the complex nature of managing co-morbid physical health issues. Requiring teams to engage in multi-agency and cross disciplinary collaboration. However, an absence of existing and/or underdeveloped structures within the Irish health care system to support such collaboration was identified as a barrier to the implementation of best practice evidenced based knowledge. To reduce existing health disparities currently impacting the lives of people with SMI and their families. This study recommends interventions at system level: policy, service planning and community levels, rather than focusing exclusively at the level of the individual.
January 2023 – February 2024
Professor Kevin Brazil, Professor of Palliative Care, School of Nursing & Midwifery, Queen’s University Belfast, Northern Ireland
Ms Olivia Jamison, Research Assistant, School of Nursing & Midwifery, Queen’s University Belfast, Northern Ireland
Dr Roisin O’Neill, Research Fellow, School of Nursing & Midwifery, Queen’s University Belfast, Northern Ireland
This study is funded by Marie Curie: MC-21-801