You may recall the adage that there’s nothing certain in life except death and taxes (notice the “uncertainty” trope at work; see previous Research Hub entry 29 April 2023). Well, you can scrap the first of these. It seems that in the time of COVID-19 you are dead for some purposes but not for others, or dead for some jurisdictions but not for others (Harries 2020; Trabsky & Hempton 2020). Or, I’ve heard it said that in the time of COVID-19 death does not count at all.
My interest in this topic was sparked by the marshalling of the phrase “underlying health conditions” in reports by public health officials in Australia in their daily briefings on COVID-19 case numbers and mortality figures during 2021 and early 2022. I couldn’t help thinking at the time that some people were identified in this way, as having “underlying health conditions”, to divert attention from the rising death toll. After all, if people who died had “underlying health conditions”, their deaths appeared to have less to do with COVID-19. An implied lower death count could then serve to reduce the seriousness of the pandemic and, subsequently, allow more “freedoms” from public health restrictions.
Research on the topic led to several discoveries. First, the phrase, “underlying health conditions” or “pre-existing health conditions”, was being used in similar ways elsewhere. In a Research Hub entry entitled “Becoming More Mortal” (22 Feb. 2022) I referred to the work of the Native American novelist, Louise Erdrich (2021), who was clearly as bemused as I was by the operation of the term. Further research led me to discover, with my colleague Anne Wilson, that the phrase played a key role in one of the longest running policy disputes in American history, the design of a health care system that covered the health of the population (Bacchi and Wilson 2022). Alongside these topics, I began to ask how such a phrase came to be (possible) and how it related to conceptions of health and illness more generally – recognizable as WPR questions 2 and 3 (see Chart in Bacchi and Goodwin 2016: 20). This search took me to the topic of death certification, the topic I introduce in this entry and pursue in two subsequent entries.
As you shall see, in this series of three entries, I make the case that there is a good deal at stake in the form and content of the current internationally standardized death certificate (WHO 2022). Specifically, applying the WPR questions, I develop the argument that the death certificate, in its design and use, functions as a governmental mechanism to undermine the social determinants of health (SDH). There is no suggestion here of deliberate intent.
To support this claim, this entry reviews how COVID-19 deaths are recorded and counted. In the second entry, in a month’s time, I offer a brief genealogy of how the international death certificate came to be adopted worldwide, with a particular focus on contestation. In the third entry of the series, I show how death certificates can undermine SDH, and review the possibilities and limitations of attempts to redress this situation (e.g., through Z codes).
My governmentality background leads me to approach this topic in a specific way. Death certificates are described as “inscription devices”, to use the language of Actor-Network theory. Like graphs and maps, they are technologies or governmental mechanisms that, because of their appealing perceptual simplicity, “make it increasingly difficult to disagree with the matter at hand” (Latour, 1987: 64–70 in de Boer et al. 2021: 400). “Government” in this usage has a broader meaning than conventional uses of the term that target specific state institutions. It involves the regulation and oversight of the behaviours (or conduct) of the population by a wide range of agencies, authorities, experts and professionals (Bacchi 2023).
As an example of a governmental mechanism, Rowse (2009) shows how the current Australian census problematizes Indigenous peoples as part of a population binary, Indigenous and non-Indigenous. Such a problematization, says Rowse, provokes consideration of the sort of political claims such a statistical distinction facilitates or blocks. In the European context, Walters (2002) explores how the apparently innocuous policy affecting signposts at airports, in which passengers are directed to EU and non-EU queues, serves to designate and firm up both “Europe” as a “place” and the category of “the European”. Importantly, in these studies the interest is not in rhetorical framing of the “problem” but in the governmental practices that produce certain problematizations and their political implications.
Following in this tradition of exploring the political implications of commonly endorsed governmental mechanisms – e.g., censuses, signposts – I want to open reflections on how current standardized death certificates play significant roles in how lives are lived and how social relations are organized. Following Koopman et al.’s (2018) work on birth certificates, I see the need to pay more attention to death certificates as governmental technologies that shape worlds.
Applying WPR (“What’s the Problem Represented to be?”) to death certification
In the language of WPR, death certificates become “practical texts” “which are themselves objects of a ‘practice’ in that … they were intended to constitute the eventual framework of everyday conduct” (Foucault 1986: 12-13; Bacchi 2009: 34). As practical texts they are problematizations with all sorts of repercussions for government funding and the design of public health interventions. How, then, I want to ask, do current practices of death certification affect governing? What specific effects can be associated with the patterns in death certification practices? Are their grounds for rethinking the conventions surrounding death certification practices and death certificates?
These questions can be addressed through applying a WPR analysis. I start from the death certificate as a practical text and consider how it produces “cause of death” (COD) as a particular sort of problem.
I ask: what is the “problem” of “cause of death” (COD) represented to be in current death certification practices? One terminological issue needs to be sorted out at this point. The focus in death certificates is on “cause of death” and, more specifically, on the “underlying cause of death” (UCOD). This term needs to be kept distinct from “underlying health conditions”, which are not considered to be the “underlying cause of death”. Indeed, “underlying health conditions” are set apart from the “underlying cause of death”, both literally and figuratively, as explained in due course. To avoid confusion, I refer to “underlying health conditions” as “pre-existing health conditions”, which is often used as a synonym.
As “practical texts”, death certificates provide the starting point for analysis. Recall that WPR examines proposals (proposed solutions, recommendations, etc.) in texts because they indicate what is identified as needing to change and hence what is produced as “the problem” (Research Hub 30 Jan 2023).
At one level, you could argue that the simple creation of a death certificate produces the “problem” as lack of certification, opening up consideration of the manifold reasons put forward for the usefulness of such certification. Historically, the practice of death certification dates to the 12th century and is considered to be a legal obligation of the attending doctor prior to the disposal of the decedent’s remains (Swift and West 2002). With the rise of nation states, emphasis is placed on standardized classifications so that information can travel across boundaries/borders (Bowker 1996: 50).
Going further, it becomes possible to examine the specific form of the death certificate – how it is designed, which items are deemed to be relevant – to understand what is being problematized. Here it becomes relevant to examine the changes made to the standardized death certificate over time. Such changes reveal shifts in approaches to health and illness.
The current standardized international death certificate has gone through several iterations (Erhardt 1956; Alharbi et al. 2021). It follows the model recommended by the World Health Organization (WHO) in 1927 (see Stirton and Heslop 2018), and finally accepted in 1940 (Armstrong 1986: 219). Called the Medical Certificate of Cause of Death (MCCD), it consists of two parts directly targeting “cause of death”. Part 1 offers spaces for a doctor or a coroner to fill in the immediate cause of death on the first line and the “chain of events” leading to this outcome on subsequent lines. On the last line in this sequence (of usually three items) appears the “underlying cause of death” (UCOD), defined by the WHO as “a) the disease or injury which initiated the train of morbid events leading directly to death, or b) the circumstances of the accident or violence which produced the fatal injury” (WHO, 2010: 31 in Stirton and Heslop 2018: 659). Part 2 of the form is used to list “other significant conditions, diseases or injuries that contributed to the death, but were not part of the direct sequence leading to death” (Stirton and Heslop 2018: 660). It is here, in Part 2, that our “underlying [or pre-existing] health conditions” are placed – a location clearly distinct from the “underlying cause of death” and the “chain of morbid events”.
Question 2 in WPR targets deep-seated assumptions and presuppositions in the design of death certificates. This question opens a plethora of themes that require elaboration. Let me run through two key themes: first, the conception of disease and hence the conception of the body in the death certificate; and second, the place of causation in the design of the form.
On the first theme, Jewson’s (2009) notion of “medical cosmology” proves useful. Described as a “parallel idea” to Foucault’s discursive formations, medical cosmologies “are conceptual structures which constitute the frame of reference within which all questions are posed and all answers are offered”. Jewson describes the cosmological system of Hospital Medicine in these terms:
“At the centre of the new medical problematic was the concept of disease. Interest in the unique qualities of the whole person evaporated to be replaced by studies of specific organic lesions and malfunctions. Diseases became a precise and objectively identifiable event occurring within the tissues, of which the patient might be unaware. The fundamental realities of pathological analysis shifted from the total body system to the specialized anatomical structures. The experiential manifestations of disease, which had previously been the very stuff of illness, now were demoted to the role of secondary signs. The patient’s interest in prognosis and therapy was eclipsed by the clinician’s concern with diagnosis and pathology. The special qualities of the individual case were swallowed up in vast statistical surveys.” (Jewson 2009: 628)
This analysis indicates that the targeting of specific “organ systems” in death certificates needs to be historicized (WPR Question 3) and questioned rather than simply taken for granted.
Second, we need to reflect on the conception of causation at work in death certificates. The focus is on a single underlying cause that operates through a “chain of events”, with causal links all the way up the chain to the final, “immediate” cause of death. The “causal chain” was introduced to deal with the tendency among doctors to list more than one underlying cause of death. The “chain” allowed a more complex understanding of the death process, without removing the focus from the “underlying cause”, which was deemed to be useful for epidemiological purposes (see next Research Hub entry).
I have written elsewhere about the contested space around conceptions of causality, specifically about how causality is treated in Critical Realism (Bacchi 2016: 6). In this tradition, Pawson et al. (2005) describe how, to make a “causal inference” between “two events (X and Y),” “one needs to understand the underlying mechanism (M) that connects them and the context (C) in which the relationship occurs” (p. S1:21- 22). Mechanisms, in Critical Realism, refer to hypotheses about individuals’ behaviours, illustrating a basic methodological individualism.
By contrast, a Foucault-influenced poststructural analytic strategy challenges conventional views of causality, in which one thing (or a few things) causes another. Instead, Foucault effects “a sort of multiplication or pluralization of causes” (Foucault 1991: 76), a proliferation of “events” as the random results of “the interweaving of relations of power and domination” (Tamboukou 1999: 207). “Everything depends on everything else” (Veyne 1997: 170). This perspective dramatically opens the understanding of the death “event” (Ariès 1982: 587), with implications for policy design – as we shall see when I address the space or lack of space for SDH in death certificates.
Question 3 in WPR asks how we have arrived at this point in our conceptualization of COD. I pursue this question in the next entry with a particular focus on contestation. As a genealogy the task is to indicate that the death certificate might have developed differently, “to show that things ‘weren’t as necessary as all that’” (Foucault 1991: 76).
Question 4 in WPR asks what is silenced through death certification practices. This question usually attracts the most attention among researchers. It is the question that encourages us to think “outside the square”, to imagine things differently. There are overlaps between this question and Question 5 on effects (Bacchi and Goodwin 2016: 20-24). Specifically, the category of “discursive effects” in Question 5 encourages us to reflect on how the current frame of reference for COD – the focus on diseases and organic “malfunctions” (Jewson 2009: 628) – makes it difficult to raise other “matters of concern” (Latour 2004), e.g., social determinants of health (SDH). I pursue this theme through the next two Research Hub entries, highlighting how the current international death certificate produces little to no room for reflecting on the social determinants of health (SDH).
Question 6 in WPR creates space to examine closely the specific practices involved in the development and use of standardized death certificates. Step 7 meanwhile confronts researchers (in this instance, me) with the need to consider the assumptions that underpin their (my) proposals for revising death certificates. For example, as someone who has needed numerous biomedical interventions, I find myself shifting between a questioning of the biomedical paradigm and sheer wonder at its successes. How to manage this tension becomes an important theoretical consideration.
A good deal of contemporary discussion about death certificates focuses on how they are filled in. That is, concern is raised about the poor training offered medical residents and how they frequently get the COD “wrong” (Morgan 2022; McGivern et al. 2017). Without diminishing the significance of this lapse in protocol, a WPR approach directs criticism at another level. Schultz (2014) puts it this way: more important than the errors in reporting is “what we are looking for” and, by implication, what we are NOT looking for – what we fail to recognize as significant. In this and the subsequent two entries, I develop the argument that standardized death certificates do NOT look for the social and environmental causes of death. SDH is missing from death certificates and missing from consideration. The implications (effects as in Question 5 of WPR) are considerable. Again, Schultz (2014) pointedly states that “we count what we care about and more disturbing we care about what we count”. It’s time therefore to return to COVID-19 to see what we count.
COVID-19 deaths: What do we count?
Historically and today, as I explain in more detail in the next entry, epidemics are treated as a separate category of disease. Consistently, they are described as underlying causes of death, pure and simple. However, as the concern about pandemic infections declined over the last century more and more attention has been directed to the “sequence of events” or “chain of morbid events” leading to death – the goal here to better understand the complex interplay of diseases, the “multiple causes”, that lead to death. The Australian biometrician, Treloar (1956: 1378), called for a “deeper study of the endemiology of chronic disease” due to the “passing of the era of acute communicable disease” (see also Moriyama 2011). And then COVID-19 arrived!
The WHO responded as expected, given the historical treatment of epidemics as exceptional diseases. It lay down the rule to list COVID-19 as the “underlying cause of death”:
“A death due to COVID-19 may not be attributed to another disease (e.g., cancer) and should be counted independently of pre-existing conditions that are suspected of triggering a severe course of COVID-19.” (WHO 2020: 3; emphasis added)
A “causal sequence leading to death” is still required: “For example, in cases when COVID-19 causes pneumonia and fatal respiratory distress, both pneumonia and respiratory distress should be included, along with COVID-19, in Part 1”. However, COVID-19 is listed last in the “chain of events” as the “underlying cause”. If the person who dies had “existing chronic conditions”, also described as “comorbidities” or “underlying health conditions”, these are to be reported in Part 2 of the MCCD (Medical Certificate of Cause of Death).
These guidelines are applied in many countries (Australian Bureau of Statistics (ABS) 2020; Veeranna and Rani 2020). In Australia the ABS stresses the need to specify the “causal pathway leading to death in Part I of the certificate”, noting that “all conditions and symptoms should be included”. In the United States initially COVID-19 was treated like pneumonia, the final endpoint, or immediate cause, in the train of events leading to death. From April 2020 the new rules required COVID-19 to be listed last as the underlying cause. Therefore, the train of events was reorganised: “any long-term conditions, no matter how serious, were then relegated to Part II of the Death Certificate as ‘contributing’ causes” (Kiang et al. 2020).
The listing of a “sequence of events” leading to death from COVID-19 and the inclusion of “underlying [pre-existing] health conditions” in Part 2 of the death certificate led to a debate about whether people died “with” COVID-19 or “from” (“of”) COVID-19. The Queensland Government (2022) uses this distinction – a distinction not found in the WHO Guidelines – in their information for health professionals about recording and reporting COVID-19 deaths:
“Recording a death “from” COVID-19
If the underlying cause of the death is COVID-19, then “COVID-19” should be recorded in Part 1 of the Medical Certificate of Cause of Death and be included on the lowest line as the underlying cause with all antecedent conditions and symptoms (including duration) that led to the disease or condition resulting in death. Other significant considerations contributing to the death but not related to the diseases or conditions causing the death are recorded in Part 2
Recording a death “with” COVID-19
If a person had COVID-19 but the virus was not part of the chain of events leading to death, COVID-19 should be included in Part 2 “other significant conditions contributing to death”, with the main condition [sic] disease or condition in Part 1 followed by the underlying causes below.”
A recent report from the Australian Actuaries COVID-19 Mortality Working Group (Actuaries Digital 2023) noted that deaths previously referred to as “with COVID-19”, are now described as “COVID-19 related”, meaning that COVID-19 “contributed to the death”.
This distinction between dying “with” COVID-19 and dying “from” COVID-19, which is difficult to make, can be used to reduce the case fatality rate (CFR) and, hence, the significance accorded the pandemic (Trabsky 2020; Amoretti and Lalumera 2020). It prompted some to make the case that the appearance of other “causes” on the death certificate means that you cannot attribute the death to COVID-19. This reasoning explains Trump’s figure of 6% for the percentage of deaths due to COVID-19 (Aschwanden 2020). These were the 6% of doctors or coroners who listed COVID-19 as the underlying and only cause of death, not mentioning the “chain of events” and “contributing” conditions. There are reports of undercounting of COVID-19 cases in the ACT and NSW due to the failure to count those where COVID-19 was not listed as a “contributing factor or cause of death” (Ferguson 2022).
In reaction to this confusion, there has been increasing reliance on the calculation of “excess deaths” in estimating the impact of COVID-19. These figures are estimated by comparing observed death versus expected mortality rates based on prior years. Examining the “excess mortality” in Australia – i.e., the deaths above those that would have been expected had there been no pandemic – the Actuaries’ Report noted that: there were over 20,000 more deaths in 2022 than expected; just over half of these (10,300) were “due to deaths from COVID-19″ (identified as the “underlying cause” on death certificates); another +2,900 were “COVID-19 related deaths”, while 7,000 made no mention of COVID-19. The Report noted that COVID-19 was a likely catalyst in COVID-19 related deaths, and that it is difficult to know “how much ‘blurring’ there may be between deaths from COVID-19 and COVID-19 related deaths” (emphases in original).
The Actuaries’ Report links the 7,000 excess deaths that did not mention COVID-19, in part, to an association between COVID-19 and subsequent higher mortality risk from heart disease: “certifying doctors would generally not identify a causative link several months after recovery from COVID-19”. Some of these excess deaths are also attributed to pandemic-related delays in emergency care and delays in routine care (Actuaries’ Institute 2023). These deaths are not considered to be due to COVID-19 since they do not involve medical mechanisms.
CONCLUSION
I suggest that it is time to shift the focus of analysis from what we count in terms of COD to what we don’t count, putting into question the central parameters of the death certificate. Building on Schultz (2014), if we care about what we count, then it’s time to start counting more things as causing death – e.g., pandemic-related delays in emergency care and delays in routine care.
This proposition operates at several levels, as will become clear in the next two entries. On one level I raise questions about the focus in death certificates on “disease entities” and what this focus precludes from analysis (i.e., the social determinants of health). At another, and perhaps more practical level, I consider whether it is feasible to bring the social determinants of health into death certification practices. I ask: do “multiple causes” approaches offer a possible way forward? And what about Z codes?
Before I broach these questions, I trace, in the next entry, some of the strands of influence that have brought us to the current situation in delineating causes of death. I identify a biology/environment tension in approaches to population health and suggest the difficulties the environmental option continues to face.
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