The National Hospice and Palliative Care Organisation conference 2016 was held at GayLord conference centre in National Harbor, near Washington DC. I wanted to attend this to get a feel for the current issues and innovations in palliative care in the USA, and also to try and understand the organisational structure of hospice and palliative care provision in a country with healthcare insurance rather than a free at the point of need system as in the UK. I'm not sure how much clearer I am on this after two days of hearing about ‘for profit’ and ‘not for profit’ organisations, and about the myriad of different providers and bureaucratic systems which seem to define the US healthcare system. The NHS seems blissfully uncomplicated in comparison - on the surface at least - though this is now of course at risk of being as fragmented as the US system with the introduction of private providers within the NHS.
Other than this, the main issues I picked up on were similar to those faced in the UK - increased scrutiny from regulatory bodies, more tick-box exercises and new-fangled electronic documentation systems, patients presenting with increasingly complex chronic conditions, burnout, and a ‘death denying’ culture where doctors are expected to ‘cure death’ rather than encourage people to make advance care plans.
I attended some very interesting sessions with some inspiring speakers and although there wasn't a specific focus on legacy projects, I found they were discussed as being effective and positive interventions.
One session I attended was entitled the 'Art of Death and Grief' and was a fascinating exploration into artists, writers, poets and thinkers who have embraced death and dying through their work. Here is a TED talk by Candy Chang which was shown in this session. She speaks eloquently about the powerful yet simple neighbourhood art project created to help her come to terms with the death of a close friend, and which ultimately helped others to consider their own ambitions in life:
Back in Baltimore I visited the American Visionary Art Museum. This turned out to be one of the most inspiring and moving museums I've ever been to. The work shown is by self-taught artists who haven't had formal training and as a result, for me, often has a much more powerful quality.
The temporary exhibition on show during my visit was entitled ‘Hope’ and I found many parallels with the legacy projects I'm researching and some of the artist's work. One room was dedicated to the work of Bobby Adams who was the unofficial documentarian of Baltimore born filmmaker John Waters (Pink Flamingos, Hairspray) and who had been for years privately curating and creating scrapbooks, cabinets, and postcards dedicated to his friends and beloved poodle. The collection of his work commemorated and documented people and events in Bobby's life, and was a rich snapshot into what is important to Bobby. On a personal level it was a thrill for me to see memorabilia from Bobby's collaborations with John Waters, who Bobby cites as a major creative influence. I left the exhibition feeling enriched by what I had seen, and by the human need to create and communicate through art - regardless of any perceived skill or formal training.
Here are a selection of Bobby's works, click on the images to enlarge.
I will leave the last word to Bobby, as I don't think I could put it better myself:
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.
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