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.
San Francisco is a city renowned for innovation, and for me it was where many of the separate points of contact on this trip, and on a larger scale, separate concepts, ideas and disciplines around end of life care began to connect. Despite the focus of my trip being on legacy projects for hospice, hospital and home within palliative care, I realised that in order to research something so specific, I needed to ‘zoom out’ and learn about innovation within end of life care on a wider scale, as legacy work can only fit into practice when there is the time, desire, knowledge and resources to carry it out within busy healthcare settings.
Much of the desire to innovate around end of life care in San Francisco is connected to the Zen Hospice Project, though there are also many other individuals starting meaningful discussions around death and dying by employing different media to get their message across. As with much of my trip, the more I have travelled and met individuals, the more I realise how many people are connected already (such as Dr Rita Charon from the Department of Narrative Medicine working with both StoryCorps and Zen Hospice Project) which leads me to believe that I am hopefully navigating around the right areas in terms of research for the Legacy Project.
On a human scale one of the certainties that connects all of us, no matter how divided we may be in terms of culture, geography, economics or belief systems is the fact that death will come to all of us. It's with this thought in mind that Ned Buskirk began the movement simply called ‘You're Going to Die’. I met Ned in a cafe in San Francisco one Saturday morning to learn more about his project. Ned is a wonderfully open, creative and positive force who was inspired to begin You're Going to Die (often abbreviated to YG2D) following the death of his mother from cancer in 2003. With a background in theatre, Ned found that he was missing a ‘safe space’ to share writing, poetry, spoken word or music around themes of mortality - so he created one.
Now YG2D is a hugely successful project in San Francisco which recently collaborated with artist Claudia Bicen whose portraits and recordings of hospice patients, one of whom she drew at the Zen Hospice, have gained international acclaim (also recently interviewed for PRN - one of the many previously unknown connections I have discovered during this project). Ned believes that when people are allowed to be vulnerable in a carefully curated, yet also spontaneous environment, magic can happen. He encourages and stimulates communication and thinking around what it is to be human, to have suffered loss, and to find freedom and acceptance in the fact that one day you’re going to die. Ned hopes that one day other cities and countries will go on to host YG2D events, as the movement unlocks a need inside people to confront ‘this thing called life’ (Prince fans may get that reference: my project was coloured purple early on when Prince died on the 21st April, and his death prompted another public outpouring of grief - and an excuse to listen to his back catalogue on repeat as I travelled).
It would seem obvious to suggest, but if people think and talk about death and dying early on in life, when they are confronted with the inevitable they should hopefully be more able to discuss choices at end of life, which can in some way help towards achieving the ‘good death’ that is so often spoken about. It is this idea, coupled with professional expertise and personal experience that prompted palliative care physician Dr Dawn Gross to begin a ground-breaking radio show called ‘Dying to Talk’, broadcast on KALW 91.7 FM. I was fortunate to spend some time with Dr Gross in San Francisco, and found that she is already a huge advocate of Ned Buskirk and YG2D. Her main passion is quite simple: to get people talking about what is important to them, so that life can be lived in full and death can be faced with dignity. As simple as this may sound, it still goes against the medical model of ‘doing everything possible’ - a model that is intrinsically tied up with the complex American insurance-based health care system, and one which Dr Gross is trying to reshape from her own unique angle. ‘Dying to Talk’ is a phone-in talk show in which Dr Gross invites listeners to call in and ask questions about advance care planning, death, dying and all things in between. Her gentle and human approach to the subject and the callers makes for a very moving and enlightening listening experience. Dr Gross hopes that her radio show can reach into people’s homes so that conversations can begin naturally and could even be part of a family dinner discussion. On the subject of legacy, Dr Gross points out that legacy work can only be allowed to happen when people are in a place to be able to reminisce and tell stories -full in the knowledge they may be dying. The alternative is potentially filled with unknown wishes and unheard stories.
Whilst in San Francisco I also visited the Zen Hospice Project and found it a beautiful and peaceful Victorian building. Millions of people have viewed the TED talk by palliative care physician and senior director BJ Miller and have been inspired by the philosophy around how life is celebrated even when death may be imminent. Their partnership with StoryCorps (as written about in a previous article) is one of the many collaborations the Project have forged - seeming to understand that the way to grow and learn is to share and invite expertise from a variety of fields. There is a real emphasis on the sensory experience of being human which is evident in the way the Guest House is set up, from the kitchen that cooks individual meals from scratch for patients - even for those who can't eat but just want to smell the food they have chosen, to musicians and singers who visit patients and their loved ones, and the work with artists in residence who each bring their unique take on life to the Project. Zen Hospice Project also has a committed stance on self-care of staff and volunteers, and each person goes through training to aid awareness of the work they are undertaking. It may be surprising to hear that somewhere with such universal reach only has six beds - some of which are allocated to paying patients and others are ‘charity’ beds for those without funds. The Project also has a partnership with Laguna Honda Hospital in San Francisco which is a 60 bedded palliative care unit, and works closely with the University of California at San Francisco. The values and model of care being practiced at the Zen Hospice Project would be an ideal for many people facing end of life, however this is currently not the case.
Taking the idea of working with the right people from different worlds, the Project has recently entered into another partnership with OpenIDEO, a San Francisco based ideas lab who draw from a vast well within all sectors to challenge and redesign current systems in a variety of fields. Their latest challenge is to redesign end of life care and the project is still at the ideas stage - so is still open for contributions at the time of writing. OpenIDEO and the Zen Hospice Project are also working with HELIX on this project. HELIX is a unique collaboration between the Royal College of Art, Imperial College and Imperial College Healthcare NHS Trust in London. It has placed designers in the same space as clinicians, researchers and the public at St Mary’s, an acute hospital in Central London, with the idea of turning healthcare issues into design solutions. They have been involved in projects such as Improving Cancer Patient Experience, which worked with patients and clinicians to map patient journeys to see how the patient experience could be improved. HELIX then turned this into a leaflet and digital app which can be shared with clinical teams, and aims to help patients understand and navigate their care. The ultimate idea being that patients have more control over their appointments and clinicians gain a greater understanding of their patient’s care experience. Their philosophy is simple: ‘real medical breakthroughs occur when people-centred design and scientific rigour collide.’
When I found out about the project to redesign end of life care it consolidated some of the thinking I've been doing since embarking on this project - it makes total sense to invite ideas around death and dying from everyone, because everyone is involved. It also makes sense to bring different people’s expertise to something that is not a solely healthcare related issue - it is global issue which often happens to be played out in a healthcare setting. For me this really is joining the dots to form connections on a universal scale. Now what ideas do you have to share?
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