Karen Charnley is Head of Institute at the All Ireland Institute of Hospice and Palliative Care, a collaborative of hospices, health and social care organisations and universities on the island of Ireland. Here, Karen introduces an important new resource to inform the improvement of the planning and delivery of palliative care.
The starting point in palliative care is always the person with the illness and not the illness. This is reflected in the very personal experiences which have enriched the All Ireland Institute of Hospice and Palliative Care’s ‘Let’s Talk About’ report published recently.
It is my hope that the 528 people who took part in the survey, by sharing their own experiences of palliative and end-of-life care, will help to improve the lives of many others. These human stories provide a picture of what matters to people.
When we know what matters, services and support can be delivered and improved to address these issues and help people to have as good a quality of life as possible, whether they have days, months or years of living ahead.
What we learnt from the survey
What comes across particularly strongly in the report is that planning for the future is a major worry for people. Planning for the future covers many issues, including planning for the end of life.
One carer felt their mother’s wishes were respected and describes how a meeting with a doctor from the hospice homecare team changed everything for them, removing the anxiety and fear of talking about the future. On the other hand, another person describes their experience as appalling, feeling they would have to go through the stages of their illness without anyone letting them know what they may have to face.
Making planning for the future normal might help to remove the fear of the unknown. I am mindful that this is a very personal issue and individuals must decide for themselves what they want to discuss.
People feel best supported when they are listened to, when they are given space and permission to express their feelings and when information is provided to them in a timely, sensitive and appropriate manner.
‘Let’s Talk About’ presents a challenge to those providing care to respond in ways which best support people and their families at this important time in their lives. It challenges all of us to provide a supportive space to think about, discuss and plan for care when facing an illness which won’t be cured.
From the stories, it is very clear that people’s understanding of care is not just about caring for an illness and its physical symptoms. Good care puts the person at the centre of care and takes into account how the person’s illness or condition affects them physically, psychologically, socially and spiritually.
It is my wish that these human stories in ‘Let’s Talk About’ have a humanising effect and are a reminder that palliative care is about the person and about living well until the end of life.
Read the full ‘Let’s Talk About’ report here.
More about the All Ireland Institute of Hospice and Palliative Care
All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a leading organisation with national and international influence driving excellence in palliative care. AIIHPC is a collaborative of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC advances education, research and practice to improve the palliative care experience of people with life-limiting conditions and their families.