My original plan was to jump straight from Ireland to the Netherlands, but Orla Keegan at the Irish Hospice Foundation sent me a link to a blog post about advanced directives from the University of Glasgow. Digging a little further, I found out about the Cecily Saunders Institute in London. Ryanair tickets are cheap, I felt like comfort exceeded discovery in Ireland (another one of those Watson phrases), and the collapse of the pound, bad for British exports, was good for an American Expat. A two week UK trip seemed fun. So I packed up and flew to Glasgow.
Switching from Ireland to Scotland is hardly a world shattering transition. There’s a shared Celtic tradition, and a similar, erm, complicated relationship with the English. Meandering through the city, I’m in a familiar pattern. Fixed on Google Maps, I move towards a goal, this time a random working class district in the north of Glasgow. Reaching it, I decide to wander back. The city funnels me back to where I began, the shopping centers surrounding Glasgow Central Station.
Not that I dislike the familiarity. The year is marked by constant change. Consistency is welcomed where it’s found.
My first “work” day in Scotland was spent with Catriona, the PR representative for the end-of-life studies group at the University of Glasgow that gave me the excuse for this extra jaunt. She first took me to the Necropolis, where the wealthy families of old Glasgow are buried, mostly old tobacconists. We reflected on the way the elite class immortalized themselves.
We then met with Richard Thompson, a PhD student in design, who is working on developing alternative approaches to grave memorials. He describes his work so: “my grandma was a writer. She left behind some books and a few letters, things she basically had control over. But my nephew, even before he was born, had sonograms on the internet.” A woman recently sued her parents for putting her baby pictures on the internet, claiming “They knew no shame and no limits…They didn’t care if I was sitting on the toilet or lying naked in the cot, every moment was photographed and made public.” Our digital selves are created before consciousness, develop our whole lives, both through private communication and deliberate public presentation, all immortally preserved on some server somewhere. What happens to these selves when we die?1
In the immediate, Richard is designing a modern day memorial, some way of preserving and presenting our digital legacies. He’s in the early stages, asking folks to imagine their digital memorial. Some are small trinkets, almost a digital photo frame. Some are grander, a room with screens showing different parts of a life, designed to decay with time.
Contrast these representations to the gravestones in the Necropolis. Graves give remarkably little detail about the deceased’s life. A couple dates, a name, maybe a career. Everyone is a beloved husband and father or a devoted wife and mother or an adored child. And these are the memorials to those who were wealthy, the industrial elite’s tributes to their status.
At the bottom of every Google in Europe is “Some results may have been removed under data protection law in Europe,” Google’s acknowledgment of the new right to be forgotten. For much of history, this right was insured through historical indifference. There were no records for the vast majority of people, and those who had the status to be remembered had the wealth to design their legacy, to some extent. Now billions of people have full and complex digital legacies.
If we consider the broadened definition of life to mean the memory of what we did in our lives, what does the preservation of our digital data mean for our memorialized selves? We did not choose to document our lives, and unlike the industrial families in the necropolis, our texts are on some server somewhere, not wearing down in the rain. And nowhere are we assured that we were a “beloved wife and mother” or any of the usual headstone sayings. Instead, every Facebook message I sent since middle school sits on some server somewhere (horrifying, I know).
Richard is trying to move beyond headstones, to present our new digital sides. He brings in numerous tensions, between controlling our digital legacy and that control’s tendency towards hagiography, the inherent durability of digital records versus the right to be forgotten. For myself, there’s the question of owning our records. Facebook transforms the profiles of those that have passed into memorial pages, but their control seems inherently problematic. After I die, can my life be used in marketing materials? Will Facebook retain a record of every article I clicked on, to recreate a facsimile of my media preferences?
The other faculty were mostly at the other campus in Dumfries, but as I considered what Catriona said, I decided take a weekend in Glenfinnan and see a little of the Scottish Highlands. I showed up at the perfect time, after the midges died and before it got truly wet and miserable The few rain showers added to the beauty, the sun coming in between the clouds, refracting a golden light over the deep red hills.
Plus I was near the viaduct from the Harry Potter films.
On a hike, I kept hearing a barking echoing off the rocks. I asked the folks at my hotel about it: “Oh, the stags are rutting.”
Ah, something sounded a bit unhappy.”
A beat, and then with a chuckle:
“Oh, I’d say they’re pretty happy.”
After my, ahem, fantasy holiday, I traveled to Dumfries, where Catriona kindly put me up in a spare room for a couple nights. I spend the next day talking to everyone I can in the study group.2
I talked to Jacqueline Kandsberger, a graduate student researching Advanced Care Directives (ACDs). ACDs tend to pop up in conversations with hospices as an element of community outreach. The theory is that ACDs will allow individuals to extend their autonomy, even if they lose capacity, making decisions about intensive and invasive treatments like feeding tubes and ventilators. The theory is that these policies will reduce confusion at the end of life, allowing family members and physicians to carry out the wishes of the patient, and reduce the use of aggressive procedures that may prolong suffering at the end of life. Furthermore, while not cited as a core reason to use ACDs, they do tend to reduce the use of costly treatments.3
Jacquelyne pushes back on some of this theory. She notes how ACDs, a legalistic document tailored to a specific situation (i.e. the loss of capacity) are often treated as the end all, be all of end of life planning, a purpose beyond the original inspiration. Furthermore, people understand advanced care directives as conversations about more than extending autonomy. ACDs are a symbolic right-of-passage into acknowledging one’s death, which in turn opens other questions about becoming a burden to one’s loved ones and the value of lived relationships. Planning for death can’t be treated as an abstraction, a technical, objective evaluation of utilitarian preferences, but as a social process located within the interplay of one’s values and relationships.
Not that doctors actually approach these conversations from a legalistic perspective. I have two doctors that have been my mentors, one in geriatrics and the other in geriatrics and palliative medicine. I saw both of them navigate these conversations, carefully balancing practical questions (do you want a feeding tube?) with values (What do you do that you enjoy? What’s important to you?). Critically, they did not view these conversations as a single moment to fill out the paperwork (though of course, the paperwork matters), but as part of an ongoing relationship.
But, and this is from reading rather than personal experience, both the nature of medical training and our (by which I mean the American) medical system means that these conversations are challenging. Doctors report finding advanced planning conversations uncomfortable, aware of their symbolic seriousness but with limited training in navigating those waters. Add in the pressures of time, and the often more temporary relationship between doctors and patients, it becomes tough to bridge the gap between the legalese and the human reality.
This was further complicated when I sat in on a class taught by Naomi Richards on Death Cafes. Death Cafes are a movement started by Jon Underwood and Sue Barsky Reid in England. The thought is to create a space for strangers to come together and talk about death to “to increase awareness of death with a view to helping people make the most of their (finite) lives.” On paper, and from the perspective of someone studying death and dying for a year, this is admirable, breaking down the death taboo. In my experience, when I introduce my project, people welcome the opportunity to talk about death, something that weighs heavy on their minds but which they lack a forum to discuss.
Well, except for the people who pull back, nervous, or joke about swapping hostel rooms.
This speaks to a challenge similar to that presented by Jacquelyn. The Death Cafe movement positions itself as value neutral, simply a forum for discussion. But the value of these discussions comes from the norm that talk, and in particular a public confessional, is good. It’s assumed that individual reflection or private, familial conversations are less valuable or would not happen in the absence of the death cafe. Furthermore, the almost jovial aesthetic of the movement can undercut those for whom death is, legitimately, a traumatic or feared thing. There is an implicit value system that society needs to be able to discuss death openly and publicly, a certain cosmopolitan public intimacy.
This is not to say that I don’t hold the view that the death taboo can, and has, caused great harm, just that it’s problematic to present ACDs or Death Cafes as value neutral or agendaless, simply tools to improve life. I think they do help people, but I’m coming from a particular Western, liberal arts higher-education, modern medicalized perspective.
While walking through the Necropolis, Catriona talked about coming to this job from her previous work as a freelance reporter. She mentioned how the constant talk about death and dying started to wear on her. Maybe death shouldn’t be a taboo topic, but it can’t be healthy to think about it all the time.
I agree. That’s why I set aside a decent chunk of my Watson funding for food.
The next day, I went to Edinburgh for a bit, nominally to talk to Dylan Hassel, a public health graduate student whose work on a scoping review of the literature on palliative care has given me more reading than I know what to do with, but really because everyone told me “you have to go to Edinburgh.” It is an incredible city, itself built on itself. So you can think you’re headed to a nifty coffee shop, when it turns out its on the road beneath you.
It’s also an interesting place to think about death and the macabre. Edinburgh’s extensive catacombs, cloudy skies, and all-in-all creepy atmosphere has earned it a place as the world’s most haunted cities. But is that tied to my project? The macabre is a way we interact with death, an acknowledgment of our twin fear and fascination. But I tend to avoid focusing on it, despite suggestions that I visit cemeteries and crypts. My interest in death and dying has been on the role of society in aiding those moving through those processes. But maybe societies fascination with the creepy gives a lens into its relationship with death, a context for the death taboo. Something to consider.
I also went to the Surgeon’s Museum, which was creepy and cool. Big fan. They didn’t let me take pictures though.
I was flying out of London. The hope was to visit another notable end-of-life research center, the Cecily Saunders Institute. Unfortunately, after e-mailing them a few weeks ago, right before heading down I got this response. If I was to visit I would need:
“1. completed visitor application form
2. A copy of your CV.
3.Two professional references.”
I was also strongly encouraged to donate to the institute. I decided I could afford to skip it. But I still had to get to London, so I gave myself one day there to sightsee. Ridiculous, I know, but wouldn’t a week be nearly as silly? I’ve been to NYC many times, and I’ve barely scratched the surface.
The moment I arrived, I was aware of the number of people, the scale, the sheer constantness of London. The cities I’ve visited so far, from Dublin to Glasgow, felt provincial in comparison. The energy was exhilarating but exhausting.
My hostel was, well, a bit much. It catered to school groups, and placed me in a 12 person dorm after I had requested 4. If you haven’t stayed in a hostel, let me say: 12 people means the sleep is going to be much less restful. 12 people coming in and out, and the odds are much higher one of them snores, or in this case, fearfully moans in their sleep.
The next day, I decided I should stroll around, do a few tourist things. I stopped by the British Museum and the National Gallery. Both were stunning and massive. I had no idea where to start. The constant moving for the last two months, barely sleeping in my hostel, and the weight of the cosmopolitan left me overwhelmed. I wandered out into Trafalger Square, hoping to find a restaurant, or better, a pub that seemed calm. I wandered into the crypts of St. Martin’s-in-the-Field, in theory because it related to my project, in practice because it had a cafe with a free restroom. There, I saw a sign indicating that the evensong had just started.
I decided to wander in. Again, like the Catholic service in Dublin, the Anglican was familiar, but with enough small changes that my instincts were slightly off. Stood up too soon for songs, mumbled through some prayers. But it was calming, feeling the enveloping of the ritual, the stillness. At the end, the minister announced a lecture that night, which recommended to anyone “who takes the questions of rationality and theology seriously.” It was a meditation by Sarah Coakley in a series on the well known “Good Samaritan” story from the Gospel of Luke. I struggled to follow all of it, but she moved between theology and evolutionary theory, trying to examine and explain how we can learn to care for the other. She argued in favor of a radical empathy, an excessive altruism, one that couldn’t be found purely through the logic of rational choice theory but required an ascetic reflection. I dunno, with where I was at, the self-reflection of ascetic isolation seemed necessary but impossible.
Fortunately, the next day I flew out to the Netherlands, where I now have a room to my own. A family friend, Mirjam, encouraged me to contact Marc, her brother, and Barbara, his wife, and they, incredibly kindly, offered to put me up for some of my time here. After so much time wandering, I was ready for a couple weeks with a desk and a bed of my own.
1.If you have a New Yorker subscription, this is a fantastic short story on that theme by Mavis Galant. You can also hear it read here.
2.University of Glasgow-Dumfries is built in an old psychiatric facility, reconverted into a university. Of course, this leads to all sorts of horror stories. Catriona tells me there’s a rumor that the tunnels running between buildings were used to dispose of bodies, “but they’re just steam vents.” The campus is beautiful, open fields and lovely sandstone buildings. The mental hospital was supposed to be a more modern institution, designed for healing and support instead of simply containment.
3.This podcast talks about an interesting example from Wisconsin:https://www.npr.org/player/embed/496749767/496761394