I have spent the last year conducting qualitative research about patients facing kidney failure. As such, I have spent a lot of time investigating what kidney care is and how it happens. How do conversations about care happen in clinical spaces between doctor and patient? And how can we improve patient care through these conversations?
The word ‘care’ and the concepts tied to it have been so closely situated to the worlds I live and work in. Palliative care, hospice care, medical care, emergency care, kidney care, healthcare, models of care: all describe a particular kind of thing that is transmitted, given, and received. I too influence this thing; my work lives within it.
But care in this context is not only an action transmuted. It is also a feeling, and a very essential one at that. This kind of care, the feeling of care, feeling cared for, is also very closely situated to these worlds. Over time, I have come to see that demonstrating care is often synonymous with providing care.
The discussions I have with patients and their family members, doctors, and caregivers have shaped my understanding of the ambiguous realm commonly referred to by healthcare professionals as ‘care,’ often used synonymously with ‘treatment’. This essay will play with the term as both verb and noun, describe and reflect on the interventionist work I do around kidney care, and interrogate the concept as an example of how my background as an ethnographer has led me to a richer understanding of this work.
Upon my graduation from the University of Cambridge, I accepted a job offer in Seattle as a research coordinator in the Division of Nephrology at the University of Washington Department of Medicine. On a daily basis, I interact with patients and their family members, nephrologists, health administrators, staff and other scientists. I have been leading a new study about how medical decisions are made between patients and their nephrologists. We are pilot testing a new communication tool, and investigating how this tool may support patients and providers in having those tricky, intimate, and often awkward conversations about kidney failure —a fatal condition but one for which patients can choose among several extraordinary therapeutic measures: Patients can receive dialysis, a form of artificial life support, that might prolong their lives for additional months to years but requires that they spend many hours each week attached to a machine. There is also kidney transplantation, though it can be extremely difficult for patients to obtain and requires a lifetime of anti-rejection medications if patients are successful in obtaining one. Finally, there is conservative kidney management, which is a palliative approach to care in which patients do not receive dialysis but instead use medications, lifestyle and social supports to manage the symptoms of kidney failure, accepting that they will eventually succumb to their illness.
Decisions about which kind of treatment is right for a person involve thinking through difficult trade-offs between gains and burdens of each. Indeed, these conversations are fused with medical, ethical, and social issues, posing questions to provider and patient about quality of life, longevity, wishes, values and lived realities.
The management of chronic health issues like kidney failure is very complex, and conversations about them in an outpatient clinic setting are too. Previous qualitative studies emphasise a need to strike a balance between patient and clinician expertise; although health professionals have more formal understanding of clinical implications, bringing a patient into the fold of decision-making by understanding their lived experiences with illness and their individual needs and wishes for treatment are important and essential to determining what is the right treatment for a patient.
However, providers are not usually accustomed to eliciting their patients’ story or having intimate conversations about personal values. For this study, I survey enrolled patients about their healthcare values before their next clinic visit with their nephrologist. Then, I use their responses to generate a customised one-page communication tool that I then give to their provider to use on the day of the appointment. On the page are tips on having the conversation, words they might consider trying, and other pointers that might be helpful in discussing patients’ values and incorporating this information into medical decision-making about their kidney disease. In very simple terms, we wonder if this communication tool might improve the care of patients with kidney disease by fostering more goal-concordant care (Allen, Wainwright & Hutchison 2011).
Part of my work also involves interviewing patients after their appointments. ‘Did you talk at all about your values in your care?’ I asked one patient. She replied, ‘We discuss a lot of things, but I can’t say values.’ While it is our hope that conversations about treatment involve discussing what is most important to a person, often they do not. Instead, they are usually discussions about those things that make up care-as-noun. Care-as-noun involves ‘things’ – things like medication, immunizations, biopsies, ultrasounds, blood and urine tests, assessments, appointments, and treatment options. These elements make up the procedural and material aspects of care. Care-as-noun means the practical and explicit ways in which people become patients, and are treated as such.
As I continued to conduct interviews, asking about care-as-noun afforded me the opportunity to explore other understandings of care. One patient described his ‘professional friendship’ with his nephrologist and how she ‘cares’ about him. This is care-as-verb. He feels that his doctor truly cares about him. She looks him in the eye, asks about his family, and in some ways, feels like a friend. Here, care takes on a different quality. Her care can be described as a sentiment, a ‘subjective and internal state of mind and feeling of a discrete individual’(Taylor 2008:318). That genuine sense of concern, that interest, that lack of indifference characterises what it means to ‘care’, which is not only a feeling, but also a characteristic of a relationship that imbues trust and respect within the delivery of care itself. The patient continued: “And she’s a good person, as well as being a good doctor, she’s a good person. And that to me is actually more important than maybe somebody that’s more technically proficient. Not that she’s not. I’m just saying, if you have two people and one of them is technically proficient and as cold as a fish, which one do you want to be with? Which one do you want to have handling your care?”
Care and the way it is done, distributed, and managed whilst also shaping life and the end of life has been written about extensively. Sharon Kaufman’s work …And A Time to Die: How American Hospitals Shape The End of Life stands out to me in this regard, tracing the works of medicine, dying, prognosis, and decision-making. She writes, ‘It is an exceptional doctor who talks about death straight on, before visible signs of dying are even evident, even when patients or family members start to ask questions about it’ (2005:47). This is not to say that the conversation tool is designed to bring nephrologists closer to a conversation about death or dying or even kidney failure per se; rather, we wonder if when given the opportunity and some support, when, how and why a provider might step into a conversation around their patient’s values as it relates to their treatment options. On a surface level, I am giving a doctor a piece of paper and asking questions about it. But fundamentally, I am exploring the anxieties, habits, attitudes, and beliefs that are entrenched in the care-worlds of nephrologists and their patients.
I have also spent time this year interviewing patients for another study about understanding the barriers and facilitators of the kidney transplant evaluation process. Receiving a kidney transplant involves a formal and rigorous evaluation process, which can be burdensome and complex for those who wish to proceed with this kind of treatment (Butler et al. 2021:215).
In one interview, a patient shared how she found out that she was ineligible for a kidney transplant. When she shared how devastated she was with her nephrologist, he asked if she would be interested in getting a second opinion. In the interview, she said, “That made me feel good. I felt like he really cared. He could tell it was depressing for me. He said, ‘We’re going to see what we can do’. And it just felt good to know somebody cared enough to say, ‘We’re going to see what we can do, let’s get this second opinion’…That was showing me that he did care, to ask me about a second opinion. Because I didn’t even think about it, I didn’t even think about getting a second opinion until he mentioned it. So I was happy when he mentioned it, it seemed like he did care, he was somebody that was trying to help. And I did, I started feeling better, not so depressed. You know, as time went by.”
Another patient described to me the ‘really good feeling’ that she had with her `nephrologist. “You can see that he’s listening. He’s not thinking about what they’re going to have for dinner or something. He’s kind of with the program when he’s talking to you. I’ve seen other people that aren’t, you can tell that they just really don’t care. They’re just there to do the job and then go home. But there’s something else about Dr [Redacted]. He’s very different, very, very kind.” That ‘something else’, that difference, that kindness, is something about care that I have come to understand as thicker than caring as a noun or a verb. The ‘thicker’ nature of care is underscored by this patient, who experienced her doctor’s kindness as something beyond the conventional definitions of care-as-noun or care-as-verb. It is both of those things and more. Thick care is an elusive quality that encompasses both the practicalities of medical treatment and the depth of human connection, weaving a tapestry of care that goes beyond the sum of its parts. It is where care’s tangible and intangible elements coalesce to form a holistic and meaningful experience. Meaningful care, thick care, emerges from within the intricate web of relationships and emotions that characterise these experiences.
I did not anticipate how studies of care like these call forward other definitions of care; indeed, how care-as-verb might share its essence with care-as-noun to create something thicker than both. What has emerged for me this year truly lies underneath the flowchart or systems map of how care is done, where it goes, and how it moves. I am always striving to witness something that isn’t quite here nor there; trying to capture something evasive, find it, follow it, and understand how it transforms from one thing into another, and why. Recognizing and emphasising this mysterious thickness of care opens avenues for a more comprehensive understanding of care in both its practical and emotional dimensions, especially ethnographically.
In reviewing medical records, dropping into clinical spaces, and interviewing participants, I have been witnessing the reflections of those who do and receive and feel this care. Experiencing and living in the care-worlds of Seattle medical systems in work like this has shown me how important it is to care about the research you do and the subjects of that research, especially when investigating care itself. I find within my line of research a striking sense of care as feeling, attitude, value, and virtue. Despite its clinical and medicalized context, my work has been revealing to me a detailed and intimate understanding of the social context in which kidney care is demonstrated and provided, and the feeling-worlds such care elicits. An attention to care in this way may further elicit distinct theoretical perspectives that are rooted in the nature of care itself, and also in the way we study it.
In the words of Carolyn Smith-Morris, the research I do solicits providers and patients to think about the ‘philosophical questions about defining the good, and about how to create structures in which the good can be pursued’ (2018: 430). I suppose this is why I have come to really care about this work, especially as I increasingly understand myself as part of this web of relationships and emotions. Because of the thick feeling underneath the care, the care I feel, where my values about what matters and why live and breathe.
I never imagined I would be working in hospitals, let alone in nephrology. This article is my first real attempt to write coherently about what I do, as I have just myself started to truly understand what that is. People often look surprised when they learn I earn a living by spending time with people and learning about their experiences. Yes, anthropologists do get employed! Reverting to buzzwords like ‘qualitative research’ or ‘storytelling’ is a tempting shortcut when explaining my work but doing so gives only fractured glimpses into the way these days add up into years that change me from the inside out.
Witnessing the resilience of patients facing the complexities of kidney failure in this way is both natural and unnatural for me. I still cry when they cry. I pause interviews, hand over tissues, and listen carefully as people describe some of their most essential human experiences. I do not always ask every question on my interview guide; meeting the human in front of me comes first. I think about these people all the time. Balancing objectivity with empathy is a delicate, difficult dance – the trial-by-fire for any thoughtful anthropologist.
This work has made me think about the concept of ‘readiness’. How does a provider gauge if a patient is ready for a conversation about treatment, values, decisions…or the future? Murky concepts like readiness, intuition, embodiment, instinct, and agency float to the top of my attention as I listen to providers and patients discuss their experiences with each other. One patient withdrew from the study after a difficult conversation with his provider about his treatment options. Even though he had consented to the conversation, this patient realised in the moment that he was not ready to discuss these topics with his nephrologist. He could not really articulate to me why he was not ready – just that he wasn’t. I understood the feeling.
I’ve been so extraordinarily lucky to be part of a research team made up entirely of brilliant women, each of whom are patient, understanding, and supportive of me as I come to know the richness of human connection and the complexities of care in this setting. The profound interplay between the tangible and intangible dimensions of care never cease to make my heart ache, a classic mark of caring deeply. I am looking forward to the next few years during which I will continue to step into this line of research as an ethnographer and lead a new multi-year ethnographic study on patients, caregiver and provider experiences with conservative kidney management as it is delivered in clinics, hospitals and patients’ homes.
The interviews quoted in this article were conducted as part of studies that have undergone Institutional Review Board (IRB) review at the University of Washington and are funded by the Doris Duke Foundation (PI, Wong) and the National Institutes of Health (PI, Butler).
Olivia Gaughran is a writer, anthropologist, and youth soccer coach. As a Mexican Irish immigrant to the United States, she endeavours to cultivate a global, interdisciplinary perspective throughout her personal and professional life. She graduated with a Master of Philosophy in Social Anthropology from the University of Cambridge in 2022 and currently works as a medical anthropologist in Seattle.
Allen, D., M. Wainwright & T. Hutchinson. 2011. ‘Non-compliance’ as illness management: Hemodialysis patients’ descriptions of adversarial patient–clinician interactions. Social Science & Medicine (1982) 73(1), 129–134.
Butler, C. R., Wightman, A., C.A. Richards, et. al. 2021. Thematic Analysis of the Health Records of a National Sample of US Veterans With Advanced Kidney Disease Evaluated for Transplant. JAMA Internal Medicine 181(2), 212–219.
Kaufman, S. R. 2005. …and a time to die: How American Hospitals Shape the End of Life. Chicago: Scribner.
Smith-Morris, C. 2018. Care as Virtue, Care as Critical Frame: A Discussion of Four Recent Ethnographies. Medical Anthropology 37(5), 426–432. Taylor, J. S. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly22(4), 313–335.