The opportunity to observe the organization of care for people nearing the end-of-life in the emergency department (ED) has been a fascinating experience as a sociologist and Phoenix Fellow. (See my previous post describing my Fellowship Project) Many of my observations were expected but others truly surprised me. For example, I expected the ED to be busy and unpredictable because you never really know which patients are coming to the emergency next. The ED is open 24 hours a day, everyday of the year so there is a never-ending stream of patients arriving, all with different health concerns. Without some form of organization the ED would be chaotic. I became interested in how all of the information, people and spaces are organized, in particular to serve palliative patients. What I was not expecting is the extensive mechanisms used to create and maintain order, and, how challenging it would be to identify palliative patients amidst those efforts.
Keeping people moving through the ED, or managing “patient flow”, is important. When I began my observations I was entranced by the ordering mechanisms that are used to keep things moving and to provide the best quality of care possible. For instance, there are layers of meticulous medical categorization scales, assessments and tests that are used to place a patient within a given category and build a medical picture of the incoming patient (e.g., assessing urgency (using CTAS), their complaint (CEDIS complaint categories), respiratory status, verbal and motor response, pain score, consciousness level, etc…). This information is in turn used to determine where the patient will be placed within the ED as the space has been organized into different zones of work including: a resuscitation area; an area for patients with complex needs; a rapid assessment area; and an ambulatory care area. All around the department there are mobile shelves with easily accessible and neatly stacked supplies that are waiting to be used. The online patient roster system is a central tool for all staff, available on computer stations and displayed on two large flat screens at the nursing station near the triage desk. It shows specific categorical details about each ED patient including their bed location, name, age, CTAS score, attending physician, RN, length of stay, admission status, etc…. These examples are just scratching the surface as there are many other ways in which information, patients and ED spaces are organized.
The different ways of ordering, that is taking random information (patient details) and slotting certain details into a categorical system (patient is given a CTAS score), allows health professionals to make sense of information and then determine what needs to be done next (patient needs to be seen urgently). As Bowker and Starr (1999) acknowledge, “to classify is human” (pg. 1). We all classify at work and home during banal tasks such as sorting emails, loading the dishwasher or choosing the female or male washroom. What is often overlooked with systems of ordering is that they implicitly include certain things but exclude others. In addition we are often unaware that the invisible meaning attached to those categories also create social and moral order on the basis of a system of inclusion and exclusion that in turn carry consequences. Think about what might happen if you walked into the bathroom closest to you rather that the bathroom designated by your gender. Which bathrooms “should” a transgendered person use? Who decides? It is not that categories are implicitly bad but rather that there are dangers associated with them. Excluding a fact, or whatever is being categorized, can be dangerous because “that fact” may remain invisible and/or unacknowledged. The resulting invisibility will likely have consequences.
The potential problem of invisibility for palliative care patients in the ED became apparent to me once I started recruitment for this study. There are various reasons for this but I believe that their lack of identifiability within the ED organizing systems is one contributor. For instance, there is no category or place to identify palliative care patients in the paper or electronic charting systems. There are blank spaces on the paper chart where it can be noted but this is left to the discretion of the note taker. This is similar to the online system where it can be noted that a patient is associated with the palliative care service, but again this is left to someone’s discretion. Even our study recruitment process imposes boundaries on who is included, or visible, in the study. For instance, we decided to include patients who are either associated with a palliative care service and/or are in the end-stage of their disease (end-stage heart disease, cancer or COPD), with about 12 months to live. This categorization helps the physicians and nurses to identify potential candidates for the study but is at the same time problematic. It excludes people who have other diseases, people who are “too sick” (or “actively dying” in medical vernacular) or people that are not sick “enough” (e.g., incurable metastases but may live longer than a year). In addition, to my knowledge, there is no working definition of palliative care for the ED and that might be a good place to start.
In the ED, whether a patient is known to be associated with a palliative care service or could benefit from receiving palliative care is not explicitly on anyone’s radar. There is a danger in this fact. With so much information floating around, constant demands, shifting priorities and frequent interruptions in a seemingly endless day, this detail may not be noted or be acknowledged in the work of ED health professionals. And this raises many questions for me. Would seeking information about associations with palliative care change how health care providers approach care for patients with advanced and incurable disease? Maybe. Among those individuals who are affiliated with palliative care, it may be clearer whether and when to use comfort measures rather than aggressive intervention. The path forward is much less clear among those who are not associated with palliative care and are either not aware of their prognosis or do not accept it. This is not easy for health professionals to navigate but is one that does come up in the emergency department. Would clearly identifying how care for palliative patients differs from typical emergency care be beneficial, and for whom? I think this could be very helpful for both patients and health professionals as it could change how palliative care is viewed in the emergency. It could reframe care as being comfort and compassionate care that would aim to ease patients suffering, rather than life saving care. Being more explicit about identifying potential or known palliative patients will not solve the problems of patient’s fear of visiting the ED or of health professionals moral and technical concerns about providing comfort care in the emergency department. However, it could bring the needs and wishes of a palliative care patient to the forefront from the background, providing the opportunity for them and/or their family to decide how to approach care. It could allow for patients to receive what they need as opposed to more tests, invasive procedures and interventions. It may allow for earlier referrals to palliative care, which can be provided at the same time as life saving treatment. Or it could lead to palliative care pathways in the ED. This would require more categorical thinking but thinking that is purposively inclusive – to include palliative patients within the organizational fabric of the ED.
 CTAS: Canadian Triage and Acuity Scale is used to prioritize patient urgency and manage patient flow
 CEDIS presenting complaint list: see Canadian Journal of Emergency Medicine 2008;10(2):151-61
 Bowker, G. C., & Starr, S. L. (2000). Sorting things out: Classification and its consequences. MIT press.
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