Professor Sheila Payne, President of the European Association for Palliative Care (EAPC), and Dr Mark Taubert, Clinical Director for Palliative Medicine at Velindre NHS Trust, Cardiff, UK, and Social Media User/Adviser/Non-Executive Director of DeadSocial, UK.
We are delighted to welcome a new EAPC blog series highlighting the accounts of patients and family carers. As an organisation dedicated to improving palliative care in Europe and beyond, the EAPC has tended to focus on the ‘voices’ and perspectives of professionals, although with the ultimate aim of benefitting patients and families who need palliative care services. Arguably, this is not enough. It is important to listen to, and learn from, the accounts (also called narratives or stories) of patients and families. They have direct experience of palliative care or, in some cases, lack of access to the palliative care services that they need.
Blogging has become part of everyday life, and much discussion about healthcare experiences happens in the online world. Patient voices are emerging everywhere online. There is an abundance of positive and negative experience being written and blogged daily, and our EAPC blog hopefully will capture a small proportion of the worldwide talk on palliative care. We hope that these blog stories start dialogue and debate, not just on the EAPC blog itself, but on other social media when they are retweeted, liked and pinged all over the world.
Because one of the most powerful ways to share experiences is by telling stories. We all have stories to tell. This is called emic knowledge, which comes from the inside, from having lived that experience – the unique knowledge that each patient and family has. This compares to etic knowledge, which is a collective knowledge about others’ experiences or abstract concepts, which are what doctors and nurses have. One type of knowledge is not better than another they just present slightly different views of the same situation. Most of the EAPC blog posts, and clinical and academic published papers, present etic knowledge, so this new series helps to redress the balance.
We therefore encourage you to read and reflect on the blogs, where patients and families will describe their experiences and understanding, some deeply moving and distressing. It is acknowledged that they offer one-sided accounts; we have not invited other people who were involved in each unique clinical case to provide their alternative accounts. The questions we suggest that you ask yourself while reading these blog posts are not about their ultimate truth or making a judgement on the apparent rights or wrongs of each case, but rather, whether they resonate with your clinical experience; why they were written; and what can we learn?
Read more ‘Palliative Stories’ on the EAPC blog
On Wednesday, Helen Findlay will be writing about her experience when her father was diagnosed with motor neurone disease. Thereafter, we’ll be publishing one or two stories from the series each month. If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
Find out more in Copenhagen…
If you’re attending the 14th EAPC World Congress in Copenhagen, please come along to the session on ‘User involvement in palliative care – do we need bridges between the knowledge of professionals, patients and relatives?’ on Saturday 9 May at 11-12.15pm (parallel session 11). Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2015