This article is part of The Legacy Project: explorations into creating legacy projects for end of life, funded by the Winston Churchill Memorial Trust Travelling Fellowship Award.
One of my main focuses of The Legacy Project was visiting the headquarters of the StoryCorps Legacy Initiative in Brooklyn, New York, which is part of the hugely successful StoryCorps organisation. The concept behind StoryCorps is beautifully simple: to record conversations and interviews between everyday people living in America which are then stored in the Library of Congress. The mission of StoryCorps is to create a tapestry of voices talking about their lives and experiences in order to build connections and to preserve and share people's stories.
StoryCorps Legacy Initiative records the voices of people who are living with serious illnesses and has formed partnerships with hospitals, communities and hospices all over the USA.
On the day I visited I was fortunate to be invited to a Listening Lunch for many of the interns who had been working with StoryCorps Legacy, and who had been pivotal in the organisation and production of many interviews when working with Legacy Partners.
It was clear that working with the Legacy Initiative meant a great deal to the interns as we sat and listened to a selection of interviews, each introduced with the backstory of how they came about, who was involved and a little about the impact of the project on the people who took part.
After the Listening Lunch I sat with several members of the Legacy team and talked about the work that goes into creating, training and maintaining partnerships with healthcare providers, as well as the targets of the initiative and how these targets are measured. I feel that there certainly is potential for recreating a similar model in the UK and was keen to learn about the organisation and training of the initiative. BBC Radio 4 has recreated the StoryCorps model in the form of The Listening Project whose recordings are stored in the British Library catalogues, however they do not have a specific Legacy Initiative in place at present.
I was told that the Legacy Initiative differs from the model of other StoryCorps projects in that it is the first one whereby clinicians in hospitals, hospices and in the community are trained to run the projects themselves. This is due to many of the participants not physically being able to visit a StoryCorps booth, as would usually be the case, to record an interview. As a result, this has culminated in an unexpected but hugely positive benefit for the staff involved in recording and interviewing- an impact that the team say they didn't factor in when designing the initiative, but which started to come to light when clinicians reported back how the project had been a transformative experience. This outcome has potential implications for enhancing compassion and resilience within a healthcare setting - issues which are very real concerns in both the US and UK systems. It can often be the case that when clinicians talk to patients they need to elicit certain medical information from them, however there is often little time or space for patients to talk about themselves as people who have interests, concerns, and hopes or reflections about their lives. The StoryCorps Legacy Initiative offers up an opportunity for both clinicians and patients, or patients loved ones, to recognise the human behind the illness.
Following my visit to Johns Hopkins Bayview Medical Centre in Baltimore to meet Dr Lauren Brooks who alongside a colleague of hers brought StoryCorps to their department, I also visited the Hertzberg Mount Sinai Palliative Care Unit in New York to see the outcomes of the initiative in this setting as well as learning more about other types of legacy projects. I shadowed art therapist Sarah Yazdian who uses many different techniques - StoryCorps being one of them - in her approach to legacy work. Sarah has many tools to hand as an art therapist and views legacy work as a therapeutic process rather than a means to creating a ‘product’ to pass onto loved ones, though this may ultimately be the outcome. Sarah is the editor-in-chief of ‘The Loom’, a magazine which showcases the work that art therapists carry out with people on the palliative unit. Each picture, poem, photograph or object is the result of skilled therapeutic work between Sarah and her client. Through the use of various different mediums patients can make meaning from their experiences and communicate what may be difficult to speak of through creative means. In Sarah's experience the process of working with different materials can often have effects on symptoms, both physical and psychological. One patient in particular found handling clay reduced her need to use pain relief dramatically, and she ultimately produced a series of clay Christmas decorations for her family to remember her by - including one for herself.
Although Sarah uses StoryCorps Legacy in her work, she says she takes her ‘therapist hat’ off when interviewing and recording participants. StoryCorps does not require the skills of a trained therapist to produce interviews, and in this respect has the potential to be utilised by a greater number of people, both interviewers and participants. Conversely, the expertise of a trained therapist such as Sarah cannot be underestimated in terms of creating legacy work due to her understanding of the therapeutic process being potentially more important than the product. Unfortunately art therapists are not part of every palliative care team in the United Kingdom (or the USA) so an initiative such as StoryCorps which can be carried out by any member of a multidisciplinary team once they have completed a short period of training, has more widespread potential as a viable legacy model.
At the world-renowned Zen Hospice Project in San Francisco, which I have been fortunate enough to visit and will write more about in a later article, StoryCorps Legacy Initiative is now incorporated into their model of care and they have a dedicated member of staff responsible for coordinating recordings and training staff. The Zen Hospice Project gained recognition universally when palliative care physician and senior director BJ Miller gave an inspiring TED talk about what matters at the end of life.
Storytelling is highly valued, so much so that the Project invited Director of the Program of Narrative Medicine at Columbia University, Dr Rita Charon, to visit the hospice and work with staff to help them develop skills in the listening, reading and interpreting of stories. Narrative Medicine is a relatively new concept, and, according to the mission statement from the department at Columbia “fortifies clinical practice with the narrative competence to recognise, absorb, metabolise, interpret, and be moved by the stories of illness”. I had the honour of spending time with Dr Charon in her office at Columbia University, and was quite awed by someone who so skilfully and delicately weaves connections between literature, storytelling and medicine. Dr Charon is a Primary Care physician who undertook a Ph.D in English Literature when she realised how central narrative was to her work as a doctor. She and her colleagues in the Narrative Medicine Department - aside from teaching a full programme - now guide clinicians at Presbyterian Hospital in drawing out narratives from their own practice, as well as educating them on how to be skilled readers and listeners. I took much wisdom away from my time with Dr Charon, and endeavour to learn more about how narrative medicine can be incorporated into my own practice.
StoryCorps Legacy Initiative, or a version of this model, certainly has potential to be successful in an English setting, as proven by its success in a multitude of different healthcare settings around the USA. However I believe that the stories captured should be along the same continuum of the approach clinicians take to their practice - as evidenced by Dr Charon's application of skills found in narrative medicine. Instead of listening to our patients' stories for the express purpose of recording them for a specific occasion, perhaps we should also be connecting the dots between how someone speaks of themselves and their illness and using these connections to respond in a more humane and effective manner every time we interact with our patients.