Community supported end of life care

Conditions

Summary

The project aims to develop, implement and evaluate a model of community volunteer, identified as a Compassionate Community Connector, who can enhance patient, carer and family end of life experiences and reduce the need for patients to be admitted to hospital. This is a partnership between the community and the palliative care service in the South West of Western Australia within the WA Country Health Service (WACHS), aiming to improve the capacity of the service to provide the full aspects of palliative care, including the physical, psychosocial and existential care. It is expected that, by the end of the project, the community will have a sustainable pool of trained and experienced people who can work with the palliative care services to cover the social and practical needs of dying people and reduce the need for hospital admissions. This approach seeks to map and mobilise people’s personal networks of care, through enlisting Caring Helpers (community volunteers) and facilitate access to formal services where necessary. Each Connector will support individuals with advanced illness and their carer/family/social network in the 12 months prior to an expected death. The aim is to train up to 10 Connectors to work with at least 30 families over a 12 week period initially, with a minimum of six contact events, to identify their social and practical needs and help meet them. Sentence for the public: The project aims to assist dying people and their families with their practical and social needs so that patients do not need to be admitted to hospital for these reasons.

Eligibility

Sex: Both males and femalesMin Age: 18 Yearss

Inclusion Criteria1

The patient cohort will include people who have an awareness of their advanced illness and are likely to die within the next 12 months, as advised by the palliative care service. This cohort will specifically include those with frequent hospital usage and people at risk of hospitalisation for palliative care including patients with Cancer, Chronic Obstructive Pulmonary Disease, Chronic Heart Failure or Renal disease and other chronic conditions such as neurodegenerative conditions. In addition, recruited patients must have unmet social and practical needs, be socially isolated and rely on just one other person to meet the majority of their everyday needs. Patients and carers must be 18 years and older. All participants need to have capacity to provide informed consent.

Exclusion Criteria1

Cognitive impairment and those not current clients of the palliative service

Interventions

The project aims to develop, implement and evaluate a model of community volunteer, identified as a Compassionate Community Connector, who can enhance patient, carer and family end of life experiences

The project aims to develop, implement and evaluate a model of community volunteer, identified as a Compassionate Community Connector, who can enhance patient, carer and family end of life experiences and reduce the need for patients to be admitted to hospital. This approach seeks to map and mobilise people’s personal networks of care, through enlisting Caring Helpers (community volunteers) and facilitate access to formal services where necessary. Each Connector will support individuals with advanced illness and their carer/family/social network in the 12 months prior to an expected death. We aim to train up to 10 Connectors to work with at least 30 families identified by the palliative care service as requiring support. This is a pilot demonstration project that will set the scene for replicating such models of care at the local, national and international levels. Attachments listed below are for the study implementer: -Attachment 1-A brief screening tool for healthcare staff to screen patients for their eligibility to enter the study according to inclusion criteria. Health service (Palliative Care team) and SPO work to identify the eligibility of patients/families to enter the study. -Attachment 2- A form to record demographic information and relevant health service utilisation, place of care over time, use of paid and unpaid resources and unplanned health service utilisation and hospital admissions. This information is collected at the initial interview and then ongoing (except for the demographics). -Attachment 3- A tool to explore unmet social/practical needs and social networks of adults living at home with advanced life limiting illness and/or their carers, completed pre and post intervention by the SPO (before first visit by the Connector and after last visit)- adapted from the Irish INSPIRE study (McLoughlin et al, 2015). -Attachment 4- Mapping the person’s social networks (using the Network Enhancement Tool (NET) including formal and informal networks- adapted from the HELP of La Trobe University (Grindrod and Rumbold, 2018). Data collection is on-going by SPO. -Attachment 5a- A tool to record Connectors’ date and duration of visits and types of tasks undertaken, including identifying support needs. Data collection is on-going by SPO. -Attachment 5b- This tool will provide a record of the Caring Helpers’ visits, dates and types of tasks. Data Collection is on-going by the SPO. -Attachment 6- Carers will complete the Carer Alert Thermometer (CAT) to identify their unmet support needs, pre and post intervention, collected by the SPO (Knighting et al, 2015). In addition, the CAT has one question to family carers “Do you know the person’s wishes and preferences for end of life care? If the patient is amenable to having an advance care plan, the palliative care team will be notified to undertake this task. -Attachment 7- Connectors will complete a death literacy tool at three time-points: before and after the training program and following the intervention period. Collected by the SPO. -Attachment 8- Patients and carers will complete the m-MOS Social Support Survey, pre and post intervention, collected by the SPO (Moser et al, 2012). -Attachment 9- Qualitative tools to assess feasibility and acceptability of this model of care: Patients and Family carers (interviews), Connectors (focus group), Caring Helpers (survey) and service providers (focus group) – to be undertaken at the end of the project by SPO - who will deliver the intervention – the Palliative Care team, Senior Project Officer and Compassionate Connectors (volunteers) with assistance from Caring Helpers. - the mode of delivery - patient/carers will be community based, home visits will be conducted by the Senior Project Officer and Compassionate Connectors. - the number of times the intervention will be delivered and over what period of time, - the Intervention is for a 12 week period initially with the Senior Project Officer visiting Pre-Intervention and Post Intervention; Compassionate Connectors will make contact a minimum of six times by home visit or by telephone call. - the location/setting where the intervention occurs, This pilot project will take place in the South West of Western Australia which covers 24,000km2 with a population of approximately 170,000. It comprises one regional port town, Bunbury and many smaller rural towns and communities. Based on the Accessibility/Remoteness Index of Australia the South West is classified 50% outer regional, 40% inner regional and 10% remote. The age structure of the South West differs from the state with a larger proportion of adults aged 45 years and over. The largest growth is in older age groups (Rural Health West, 2016). The leading causes of death in the South West region are: ischaemic heart diseases, cerebrovascular diseases, dementia (including Alzheimer’s disease), lung cancer and chronic obstructive pulmonary disease. - any strategies used to assess or monitor adherence or fidelity to the intervention, if applicable. All Connectors will attend a two day training program inclusive of practical application of the documents to be used and they will receive ongoing support from the Senior Project Officer who monitors the data collection occurring.

Locations(1)

WA, Australia