COPD video case study to inform policy and practice: Living and Dying Well
A moving, personal narrative from Margaret Williams, a patient of St Margaret of Scotland Hospice, Clydebank, who lives with Chronic Obstructive Pulmonary Disease - COPD.
As part of the ongoing education and development projects Enterprise Screen undertake with St Margaret of Scotland Hospice, this film was commissioned as part of the NHS Greater Glasgow and Clyde (NHSGG&C) Palliative Care Practice Development Study Event - Living and Dying Well, Building on Your Progress. The event was hosted by the Hospice and facilitated by representatives from NHSGG&C Acute Services, Hospices and Primary Care. Attendees included those with a specialist interest in Palliative Care from across all care settings.
The following article, by Hospice Lecturer, Jacquie Lindsay, outlines why the film was commissioned and the impact it continues to make.
LIVING AND DYING WELL: BUILDING ON YOUR PROGRESS
Margarets story was crucial to the Study Event programme. Living and Dying Well - a national action plan for palliative and end of life care in Scotland was circulated to all Health Boards across NHS Scotland in 2008. It contains 24 action points and recommendations to enhance and improve the quality of care of those living with any life limiting illness from diagnosis to death.
Whilst it was important on the day to hear of the difference Living and Dying Well had made from a professional perspective, it was as important to hear of the difference it had made from a patient and carer perspective. Three narratives were shared. The first saw a carer describe the end of life experience of her husband dying at home of Heart Failure (an Enterprise Screen/SMH film), the second a carer supporting his mum at home with Dementia (Tommy Whitelaw- Tommy on Tour) and the third was Margaret living with COPD. The audience listened to each narrative with shock and disbelief- recognising how far removed patient and carer experience could be from the aims of the action plan- and more importantly how simple it was to fix.
Margarets narrative tells us of professional attitudinal barriers, unworkable systems, dogma and the poor financial resource available to those under the age of 65 who are living with a non-malignant illness. She shares her personal wishes as she Thinks Ahead towards the end of her own life, hoping that someone, somewhere, will care enough to listen.
The process of film preparation and production was not easy for Margaret as she looked COPD in the eye with all of its impact, fear and consequence. She has however described how cathartic and necessary the process was and how she needed to face up the fact that she was afraid and of not getting better. Margaret has been empowered not only by her personal courage to share this story but the empathy of those who have viewed, as they recognise what could happen to make the lives of the 55,000 people who die in Scotland each year, better.
In Margarets own words, the essential ingredients are:
"not to die alone- to be treated with humanity- dignity- love- what does it cost? It doesnt cost anything-"
Capturing personal narrative with film is one of the most powerful mediums in learning. Upon listening to the life stories and experiences of people living with life limiting illness, patients and families alike, we learn what is required of us. This learning experience cannot be gained from a text book nor from a distance. It is gained through relationship, through getting to know and being with. When we assess impeccably, plan collaboratively, communicate meaningfully, evaluate and review regularly, we gain the trust and respect of patients, their families and carers. Following diagnosis of any life limiting illness people genuinely wish to matter to us and feel cared for. They wish professionals to be human, respectful and real.
Story-telling from a personal perspective cannot be debated, minimised or questioned. It is as it is. An audience watching a film such as Margarets will identify with her story, perhaps because it will not be the first time they will have heard it. Another name and illness could title this film and the story would sound familiar. Only health and social care professionals across Scotland can interrupt and pause such a story- we have the power, the where-with-all and the means to bring stories like this to an end. We can make palliative and end of life care better in Scotland, we can improve it... not because Living and Dying Well tells us so, but because we want to.
Jacquie Lindsay - St Margaret of Scotland Hospice Lecturer
The film is now due to be shared with the wider health and social care community, informing a consultation exercise by Health Improvement Scotland (HIS) and will be embedded on various sites using the Enterprise Screen player.
Some key learning points from those who have watched this film centre on changing the system of managing anticipated symptoms:
"Margaret having an antibiotic at home just in case she feels the known and recognised symptoms of a chest infection occur"
"making access to GPs easier especially for those living with a known life limiting illness"
"more meaningful communication that actually matters and improves the knowledge and confidence of professionals who have serious decisions to make at all times of day and night"
and last but not least...
"ensuring the person remains at the centre of the system at all times and is cared for by people who genuinely wish to do the job, those who are skilful, knowledgeable, competent, confident and above all else, care".
Find further resources on the St Margaret of Scotland Hospice Website.