She's Talking About Foucault Again...

Another Watson hypothesis has been proven: each place I visit will look entirely different routine-wise and require certain adaptations as I make it a temporary home. The last time I posted, I was on a train up north to Lancaster where I would be spending two months conducting a literature review with the International Observatory on End-of-Life Care team at the University here. Now, unbelievably, it’s two weeks later and I finally have some free time to sit and digest what I’ve been witnessing and doing. I suppose I have not written up until this point because my research is “in progress” and I will be continually thinking and reflecting on the work until it’s in its final stages, so I have not wanted to write half-baked thoughts just because I was posting more in London than I am here. Thus, a change in routine – I have not felt the need to constantly write down every interesting thought relating to my research because it’s ongoing and continuous, unlike some of my more sporadic and ever-changing work in London. This is one of the MANY differences between my time in London and my time up North but I’ll save some of the more personal reflections on the place and lessons learned for my end-of-September blog post. For now, I wanted to have some space to reflect on my time with the International Observatory on End-of-Life Care (IOELC) team and some things I’ve been thinking about generally.

For starters, the IOELC is a coalition that works on local, national, and international levels to provide cutting-edge palliative and end-of-life care research for stakeholders in both policy and clinical care environments. The overall aim of all their work is to effect change at both macro and micro levels to ensure that people everywhere are receiving evidence-based and person-centered palliative and end-of-life interventions. From my brief time with the team so far, it is beyond evident how committed everyone is to bringing palliative and end-of-life care to the forefront of medicine globally for the sake of patients and their families. Currently, they have more than 14 individual projects, ranging from work closer to home to work with the EU to ensure a standard of care in policy and practice throughout Europe. I have been inspired by their commitment to effecting change not just for their communities but widely, across continents and medical systems. To hear a bit more about this work, you can listen to Emeritus professor and palliative care research champion, Professor Shelia Payne, speak a bit more about the observatory’s work.

While the bulk of my work has been on conducting a literature review, I have had the opportunity to speak with many members of the IOELC team. Many of these conversations have sparked thoughts about my Watson project that I wanted to share briefly in this post. Last week, I spoke with Professor Nancy Preston, one of the “principal investigators” at the observatory. Professor Preston has spent much of her professional life in palliative care with many different hats, both clinical and within research. As such, she has seen the field grow, change, and push against challenges and constraints. While we spoke about many things, our conversation slowly made itself to the topic of differences in care between the United States and the United Kingdom. Thus far in my project, most of the teams and people I have encountered have been curious about palliative care in the USA and are shocked to find out how behind, in many respects, it is to the care system in the UK. Professor Preston, however, with her experience collaborating internationally, knew exactly what I was referring to when I spoke to my understanding the of challenges facing palliative care in the USA. We spoke at length about the differences between the construction of each country’s palliative/end-of-life care system, and what they have been built to do, intentionally or not.

In the UK, as I have come to have intimate experience with over the past month and a half, palliative and end-of-life care exists on a continuum of care within the larger UK system. Broadly, palliative care manages the symptoms of patients that arise due to their disease or even the treatment of their disease. End-of-life care is an intervention reserved specifically for the dying phase and includes the management of holistic wishes and needs specifically related to the end of life. However, this description is an oversimplification because there are so many supports that exist within the umbrella of this system to provide what Professor Preston and others would call “wrap-around care.” Palliative care doesn’t exist only in a hospital setting in the UK; in fact, it arguably does some of its best work outside of the hospital. A palliative in-patient care team would help manage symptoms while in the hospital, then a care team would work to refer you to community palliative care teams that could continue symptom management from a person’s preferred setting. This setting might be at home, at a nursing home, or in a hospice. But a hospice in the UK is far different than a hospice in the US. Hospices in the UK are where patients go to manage their symptoms continuously and are not utilized solely as a place to die. Hospices are an extension of community palliative care; one might have a short stay at the hospice to manage a specifically bothersome symptom, they might come simply for the day to receive treatment, or in some cases, a person can come to a hospice if their caregiver requires respite. Very rarely, unless by request of the patients themselves, are hospices utilized as a place for death. Thus, a patient’s symptoms are managed, and their holistic well-being is supported through life and into death.

In our conversation, Professor Preston reiterated this point that I had begun to grasp during my time in London. However, she also spoke about her experience of then trying to relate to American counterparts throughout her time doing international research work and initiatives. When we think about communication between people of different backgrounds, cultures, societies, and languages, it’s important to understand what is and isn’t a part of shared vocabulary. In my conversation with Professor Preston, we both quickly concluded that hospice and palliative care are not part of a US/UK shared vocabulary, at least not in the way they currently operate. While the US may have envisioned hospice and palliative care similarly to the UK when it was first established, we have since strayed from the path. In the States, palliative care and hospice are reasoned to be solely for the dying, and dying in the US comes only through the perceived failure of medicine to be capable of any more “curing”. We’ve operationalized palliative and end-of-life care to be equated to fear, avoidance, and failure and therefore have splintered these methods of care from the larger medical system.

Maybe it’s the English major in me but I am seeing language everywhere in my project thus far. And each day, I am more and more convinced that language is the crux of the end-of-life issue in the United States medical system. In my sophomore year at Middlebury, I took a course for my English major called Contemporary Literary Theory in which we did a wide survey of the pervasive theories about language and literature. Recently, one such theory called structuralism has been on my mind. One structuralist theorist, Claude Levi-Strauss, explained that anything in our world (literature, culture, traditions) that has meaning gets said meaning from a system of conventions that we connect to the language. There are endless applications of this theory – in popular culture, I have found it often pops up as the very meta-question of whether societies that lack a certain word for color are not able to perceive that color at all. In summary, language shapes the way we contextualize and understand the world around us. Of course, this also means that language has the power to distort reality or at least our perception of it. Michel Foucault, a member of the post-structuralist era, referred to this idea as discourse – the idea that language is simultaneously produced by and reproduces power structures or, more simply, language is used to spread the ideas of those in power and reinforce their position of power.

At this point, this probably sounds like the ramblings of someone who dearly misses their literature classes at Midd. It is…but it’s also pertinent. Many people assume that the UK and the US are very similar; it is often why I have been met with such a tone of surprise when I explain how greatly they differ in terms of satisfaction surrounding end-of-life care. However, we see the way that the discourse around palliative, end-of-life, and hospice care has created divergent systems. In the UK, where hospice equates to symptom management, care continuity, to an extension of the hospital itself, community, and to life, it fits easily into the context of a medical system that attempts to center support and person-centered care. In the US, where all the same buzzwords equate to failure, pain, and death, it is no surprise that hospice and palliative care systems are misunderstood and severely under-utilized.

With my Foucauldian hat still on for just one more minute, we have to then ask the question, who does this language benefit if it’s certainly not patients? So we follow the discourse, back to insurance companies who charge us by procedure, to “big pharma” who wouldn’t make nearly the same money off medicine cessation and focus on symptom control, and finally medical bureaucracies and the government who profit off of the prolonged use of privatized hospitalizations and putting off death as much as possible. Simply put, there is no money and no power to be gained from dying well, so language creates a monster out of dying and any systems that might make it less scary. Dying is scarcely taught in medical schools or hospitals, and it’s certainly taboo to speak about in common conversation. I started this journey with the hunch that language and storytelling could change the way we conceptualize end-of-life care. Now, just a month in, I am concerned that if we don’t buy into this – that if we don’t start talking about death more freely and reclaiming the discourse – we are resigning ourselves to a system that does not serve any of us to the best of its ability.