If, like me, you are a citizen of the global North, the statistical probability is that you–after a protracted illness–will spend your last days and die in an acute-care hospital. Increasingly, a good death in these institutions calls for a specific form of medical expertise–palliative care.
As a medical anthropologist, one of my main research interests is how this burgeoning medical specialty operates as a culture; a system of relationships and practices that produces meaning about, and thereby orders, a coherent dying process.
In order to better understand hospital palliative care, I conducted 12 months of ethnographic research within two large tertiary care hospitals in Western Canada.
I was interested as to how hospital palliative care facilitates a good death through ordering the (often chaotic) emergent physical states of the patient as dying (or not), along with defining the appropriate emotional orientations to these understandings.
My research focused on three aspects of this clinical work: therapeutic relationship building, addressing total pain, and offering of the dying role. I explored these as instances of emotional labour – the work of changing our own or another’s feelings to fit what we think is appropriate for the situation.
This enabled me to examine hospital palliative care as an instance of an “affective economy”; a discursive formation, understood and explained through its emotional labour practices, which attempts to organize the dying process in order to facilitate a good death.
I explored how these practices attempt to order the affective experiences of dying (the diminished capacity to strive) to maximize the social productivity of the dying process; by creating individual meaning, providing collective social order in face of loss and mortality, and increasing the ability to govern the biological processes of dying for the population a whole.
Consequently, a good death in hospital palliative care occurs as a negotiated outcome of a series of social process and relations that simultaneously addresses the concerns of critically ill individuals, their relations, the professionals that care for them, the institutions in which these professionals labour, and the larger society within which all are located.
Yet I also found that hospital palliative care was not as clear cut as I had initially assumed; it was messy, fragmented, and often ambiguous in both process and outcome. The actual work was in many cases much less purposeful and much more muddled than I anticipated based on the ongoing public conversations and literature about the benefits of palliative care.
This complexity both constructs and reflects two contradictory, but not necessarily antagonistic, discourses that constitute contemporary hospitalized palliative care.The first is that palliative care is a specialty designed to meet the unique needs of those at the end of life while at the same time is appropriate for those who are not at the end of life. The second discourse champions empathic claims to patient and family member autonomy and clinicians’ authority to define direction and outcome of care.
These discourses both shape and echo clinicians’ expanding scope of practice, use of increasingly complex clinical interventions, new patient populations that do not have stable prognostic trajectories, and engagement with populations who are still seeking curative or life-extending treatments.
Further, as biomedical evidence-based practices and research emerge as the benchmarks for best practices, “objective” measurable components (i.e., pain and symptom management) are given priority. This led some clinicians to cite the provision of symptom management with little emphasis on any other aspect of care as a source of personal and professional distress. Other clinicians disagreed, citing investigations and interventions as a sign of a maturing medical specialty.
Clinicians attempting to juggle earlier and increasingly complex interventions, expanding populations of care, and the rise of business modeling may therefore work within irreducible tensions in their ability to simultaneously meet the needs of their patients, the patients’ networks of relations, fellow clinicians, and the institutions of care.
Consequently, while many of the patients I observed had relatively unproblematic deaths that could be conventionally labelled as “good,” many others required complex, shifting, and ambivalent negotiations of emotional labour by all parties and ended in what I came to term a negotiated “good enough” death.
In these instances, patients were often receiving forms of treatment that could be conceptualized as life-extending. In turn, palliative clinicians were often unclear as to when to withdraw these treatments, even those with waning efficiency, based on concerns that the patient may suffer from less than optimal symptom management.
Yet continuing the interventions raised concerns about medical futility, significant side effects, requirements of continued hospitalization, a prolonged dying process, and/or false hopes of stabilization. Such situations led to clinicians repeatedly phrasing purpose of admission and care as “tweaking” or “tuning up”, constructing patients as “a work in progress” and often asking one another if they were “extending the dying process” or “causing suffering”.
In turn, the clinicians’ privileged position to define the situation was subject to substantive and ongoing negotiations by all involved in the provision and uptake of care. Clinicians were then challenged by their inability to do anything other “wait and see”. Clinicians’ ability to organize the dying process was further challenged by complex family dynamics, interaction with non-palliative specialists, diverse cultural norms, evolving professional boundaries, and bureaucratic mandates.
Defining and mutually agreeing on appropriate care practices and outcomes often remained a moving target until shortly before death. In these instances, clinicians framed acceptable outcomes of care within two precepts.
The first emerges from the practices of palliative medicine where clinicians’ primary responsibility is to (in so far as possible) enable patients to die symptom free.
The second is grounded in the philosophies of palliative care where clinicians are also responsible (in so far as possible) to facilitate patients’ control over how they die. This often translated to a return to routine medical practices and a hierarchy of care which focused primarily on physical symptom management and efficient transitions through the terminal care pathway.
In these instances, a significant investment of clinicians’ emotional labour is required to negotiate the tensions that both reflect and construct the ideal of an individualized good death, the expansion of expertise and audience, and the practical maintenance of the hospital as an institutional organization.
By conceptualizing hospitalized palliative care as an affective economy, the specific moments and networks of relations that constitute this form of care become understandable as a cultural system that attempts to make human capacities productive, even at the very end of life. Yet clinicians’ privileged positions are understood as occurring within active and sustained negotiations, where emotional orientations to the dying process are generated, validated, and/or contested through the perceived rights and obligations of all involved parties.
This framing also encourages an understanding of hospitalized palliative care as necessarily fluid and ambivalent, defined as much by its practices of negotiation as by mutuality and cooperation. Rather than attempting to reconcile these tensions, my research highlights that these disjunctures and contradictions constitute the practices of hospitalized palliative care as much as the desired outcome of facilitating a good death.
While this work adds to the small body of scholarship that explores the daily practice lives of hospital-based palliative clinicians generally, my focus on rendering visible “indeterminate” aspects of their work may inform a more nuanced understanding of how clinicians necessarily practice within the confluence of multiple, and at times competing, interests (including their own).
I am also interested as to how these findings can inform emerging practices regarding the increasingly popular, yet still amorphous, “palliative approach.” Through these kinds of critical engagement and reflection, I suggest that researchers and clinicians together can foster the capacity to sit with, and publically grapple with the situational ambivalences in working with the hospitalized dying.
My research is significantly indebted to Professor Clark’s thoughts on total pain. His research on this topic, and other concepts central to the development of palliative care, eloquently bridge ongoing academic and professional silos. His ideas are “good to think with”, and they continue to extend my ability to ask important questions about the complex realities, not just the ideals, of contemporary hospital palliative care. This includes my current post-doctoral research examining practice tensions in implementing electronic quality of life and experience of care assessments for people with life-limiting conditions, and their family caregivers, who are in need of a palliative approach.
Consequently, on a recent trip to Scotland, I eagerly sought an opportunity to meet with Professor Clark and the University of Glasgow’s End of Life Studies Group–both to share my research, and to learn about their interdisciplinary work on end-of-life care within a global context.
I presented my thesis research to the group, and an audio recording of my presentation is available here:
During this visit Dr Shahaduz Zaman and I also recorded a podcast which we discuss the challenges of hospital ethnography in a palliative care setting.
Based on their openness and enthusiasm for collaboration opportunities, I will be returning for the month of November 2016 to extend my current research to a broader examination as to how hospital palliative care has developed in diverse global contexts. I believe this warm welcome and mentorship is but one small example of Professor Clark’s commitment to fostering innovative scholarship to shape policy, service, and practice development in palliative care. I look forward to reporting on the results of this collaboration!
Marian Krawczyk
- Krawczyk, M. T. (2015). Negotiated Practices: Understanding Hospitalized Palliative care as an Affective Economy (Doctoral dissertation, SIMON FRASER UNIVERSITY)
- Understanding hospital palliative care as an affective economy, Krawczyk, M. podcast, University of Glasgow, 2016
- The challenges of hospital ethnography in a palliative care setting, Krawczyk, M. and Zaman, Z., podcast, University of Glasgow, 2016
Dr Marian Krawczyk is a postdoctorate researcher at the Centre for Health Evaluation and Outcome Sciences at Providence Health in Vancouver, Canada. Her work is jointly funded by the Canadian Frailty Network and Trinity Western University. Her research interests include: palliative care, clinical practice change, new technologies of care, knowledge construction, narratives of illness and suffering, embodiment, and research ethics.