When planning for the Watson, I committed to a month month in Dublin. I had found some cheap housing. It was a big city, full of things to do. I knew I was about to be thrown into an unfamiliar world, and I hoped to ease into becoming a nomad. Dublin is a large cosmopolitan city, containing 10% of the Irish population in its core, and 40% in its greater metropolitan area. It seemed like a good way to get introduced to the country.
I’m happy I started this way. I’ve been able to explore the city at my own pace. It’s given me a chance to make deeper connections. It’s allowed me to get the lay of the land and consider the direction of my research.
Dublin is a strange city, especially in the summer. Without the students, and with many folks off on holiday, much of the city center is covered with tourists. If often feels easier to meet an expat than it does to meet a native Dubliner, even getting off the beaten path. I’ve been to some hole in the wall coffee shop and found that everyone has an American accent.
But it’s also been nice to become familiar with navigating the roads and the buses. I know how to get from one place to the other, and while I’ll never understand why the Irish hate putting up street signs, I don’t really need them anymore.
At the same time, there are limitations. particularly as I’ve developed the questions I hope to answer.
I am unlikely to get formal patient contact while in Ireland. They don’t really want random individuals interviewing patients without an organization, like a university, taking responsibility for them. Pretty reasonable. So I’ve ended up speaking with academics and individuals working in advocacy and research groups for palliative care. They have helped me get a bird’s eye view, and led me to the conclusion that I need to look outside Dublin. While Dublin has some of the best end of life care in the country and maybe the world, the picture is different in much of the rest of the Republic.
Initially, the practice of palliative care was limited to inpatient hospices and thus care for the dying. The good news is that this care was often community led, with the facilities constructed through local donations. The bad news is that the staffing for the hospices was paid by the state, and the inpatient hospice model, while a gold standard, is very resource intensive. Furthermore, as the practice of palliative care expanded beyond care for the dying, the emerged a need for a broader distribution of palliative resources, with a palliative philosophy and skill set distributed throughout the medical establishment. But across the country, resources remained tightly concentrated, all surrounding these inpatient facilities. In 2004, per capita spending on hospice was €30 in the Northwest region, but only €1.53 in the Midlands.
In 2001, the Irish government established that all citizens should have access to palliative care and dedicated more resources to that purpose. The gap has closed somewhat (in 2007 the range was €7.9 to €35 per capita), researchers have found no relationship between the assessment of a region’s palliative needs and the funding it received. From a historical institutionalist perspective, this makes some sense. When a government or philanthropy looks to spend money on something, they tend to look where it’s been spent in the past, rather than adopting risky new approaches. Places without a strong palliative network lack interest groups to advocate for funding, or the information to know how it might help.
The challenges in providing care to patients are also fundamentally different than in urban spaces. I talked with Philip Larkin, the current president of the European Association of Palliative Care, who discussed the challenges of simply scheduling treatment while working in the Galway. A nurse would drive an hour out to take care of one patient, encounter an unexpected challenge, and be stuck for a couple hours, before having to drive to the next place. Often they were they only people available, so if they couldn’t make it, it might be a day or two before someone could get to meet with the patient.
Of course, people are aware and are taking different approaches to confronting these challenges. I’ve met with Karen Charnley, the President of the All Ireland Institute of Hospice and Palliative Care (AIIHPC). The AIIHPC is funded through Atlantic Philanthropies and is made up of hospices and advocacy groups around the entire island. They have their hands in all sorts of things: improving communication and cooperation around research, analyzing patient needs, and increasing community awareness of palliative resources. A good example of all these are their palliative hubs, front facing websites designed to offer information on palliative care to older patients and caregivers, parents of children with palliative needs, or medical professionals. The hope is offer as much information about the theory and practice of palliative care to as many people as possible. Work from individuals like Geralyn Hynes, at the Trinity School of Nursing, and Orla Keegan, a bereavement counselor with the Irish Hospice Foundation, are looking at ways of reaching out to the community, which should hopefully increase the ability of volunteers and community members to support patients. There’s been work to generate “Hospice Friendly Hospitals,” or hospitals with well integrated hospice care.
As it is, I’ve been talking about this work, rather than seeing it in action. Fortunately, all of the people above have graciously connected me with lots of folks around Ireland, in addition to offering way more information than has made it into this post. I’m heading to Galway on Thursday for a week or two, and then probably to Limerick, both of which have very different geographical and demographic challenges. Should give me an interesting comparison.
While I have enjoyed my time here, I have ended up feeling slightly constrained by my month long lease. Once I realized where I wanted to go next, I wanted to throw my backpack together and head out. Good to know for the future. I may have submitted a formal research project to the Watson, but it seems the other educational agenda is figuring out just how the Watson works.
I’ll be back in Dublin before my time in Ireland is up. For one thing, the transportation network is a hub and spoke model. All roads lead to Dublin. And I’ve become fond of the place.
Some more stuff to read, for anyone who’s curious:
Perspectives on the End of Life – A very long report on a island wide forum on issues and understandings of death and dying in Ireland. Published by the Irish Hospice Foundation
Challenges in increasing regional equity in palliative care service provision in Ireland – For anyone who is interested in the details of the regional challenges in Ireland
The Economist’s Quality of Death Index – Offers a well done, if narrow, assessment of the level of care for dying people in different countries