Improving end of life and bereavement experiences in Northern Ireland
Compassionate Communities NI on Wednesday, 14th September launched a Community of Practice which will look to improve experiences of end of life and bereavement for people in Northern Ireland. The event took place in the Seamus Heaney HomePlace in Bellaghy and brought together people from all sectors who have an interest in making life better for people dealing with the challenges of death, dying and bereavement.
Compassionate Communities is an international movement which recognises that caring for one another at times of crisis and loss is not a task solely for health and social services, but it is everyone’s responsibility as a public health issue. The places in which we live, work, play, learn and pray are the micro communities that have capacity to offer emotional and practical support.
The role of the arts
Brendan O’Hara, senior planning & commissioning manager, South Eastern LCG, opened the event and reflected on the importance of the arts in supporting people with palliative care needs. With reference to our connection with stories Brendan advocated the need to speak about care, death, dying and bereavement to uncloak this often-invisible community.
Sharon Williams, project manager said, ‘Networks of support are critical in a person’s journey through serious illness, frailty and until death but unfortunately because of fear and stigma many people experience a social death long before the biological death.
Sharon went on the say that ‘it’s not that death and bereavement are the issues, they happen to everyone at some point, the issue arises from how we all cope. The challenges are clear in the number of people suffering from anxiety, depression, suicide, family breakdown, lost days at work and at school.
Hugh Nelson, head of Community Wellbeing for the Northern Trust adds ‘This Community of Practice will be a place where we can share and learn together, supporting each other and supporting our communities’. Hugh explained the importance of a collaborative working that can maximise the return on resources, and human skills and experience referring to the multi-media resources created to improve ‘death literacy’.
Advance care planning
Kathleen Bradley, community engagement facilitator, Compassionate Communities NI described the death preparedness work through community information sessions. Sessions provide information and encourage conversation that help people interpret unfamiliar terminology and help them to take practical steps that improve their ability to make decisions about future care and end of life care options.
Importance of the lived experience in quality improvement
Alison Craig, Macmillan Palliative Care Service improvement facilitator showcased a video that told the story of a recently widowed lady’s experience of palliative and end of life care as she accompanied her husband through terminal illness, death and her family’s bereavement. Because of this feedback the Northern Trust were able to improve the Patient and Families Support Booklet ensuring a better experience for others, her valuable feedback will also shape learning and education for staff.
Donall Henderson, chief executive office, Foyle Hospice referred to the poignancy of Seamus Heaney’s poem ‘Mid-term Break’ which recounted the poet’s lived experience of the death of his young brother. Following conversations with the audience highlighted the importance of spiritual care for patients, families and staff, the need for managing expectations around preferred place of death; growing concern for financial wellbeing and the importance of better death literacy.
Feedback gathered from attendees confirmed that everyone was committed to embedding a community of practice that included people from every sector and community who have the capacity to support people at a time of crisis. Results from an audience poll are summarized below and will help guide next steps in the evolution of a Community of Practice for people affected by death, dying and bereavement.
for more information
To find out more information or how to get involved contact Sharon by email [email protected]