The Social Determinants of Health (SDH, or sometimes SDoH) have been on the health agenda for over two decades. The World Health Organization (WHO) describes them as “the non-medical factors that influence health outcomes”: “They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life” (WHO 2023). The literature in the area is extensive. There have been numerous WHO Commissions on the topic. The 2009 Commission expanded the definition of SDH: 

“The social determinants of health are defined as the structural determinants and conditions of daily life responsible for a major part of health inequities between and within countries. They include the distribution of power, income, goods and services, and the circumstances of people’s lives, such as their access to health care, schools and education; their conditions of work and leisure; and the state of their housing and environment. The term ‘social determinants’ is thus shorthand for the social, political, economic, environmental and cultural factors that greatly affect health status.” (WHO 2009)

These “social determinants” do not immediately come to mind when one mentions a death certificate. Rather, the tendency is to think about death certificates simply as administrative forms that must be filled in to track deaths in the community. Death rates clearly make a link more feasible – illustrating, for example, the high numbers of deaths proportionately among certain social groups, for example in suburbs with lower socioeconomic status (Glover et al. 1999; AIHW 2022). However, death certificates precede death rates. In fact, they constitute death rates. According to Swain et al. (2005: 652), “the primary tool for measuring mortality rates is the death certificate”. Hence, I suggest that analytically they deserve a closer look. 

In this analysis, death certificates are treated as governmental mechanisms or technologies that have effects “in the real” (Bacchi and Goodwin 2016: 44). Specifically, how COD (cause of death) is problematized in these administrative documents/forms shapes lives and living conditions in particular ways that need to be traced. Death certificates rely upon deep-seated ontological presuppositions about how bodies work (or don’t work) and the kind of subject that “inhabits” these bodies (see Jewson 2009). The individual is regarded as an “essentially biophysiological and neurophysiological system, which can be broken down into an unlimited number of subsystems (anatomical, cells, molecules, genes) that are functional parts of the whole” (Yadavendu 2003: 5180). Disease is considered as a malfunction of one or more subsystems. The study of disease is called pathology.

At the most obvious level the focus on pathological system failure in death certification practices completely precludes attention to SDH. There is certainly no space on the standardized international death certificate that explicitly invites the listing of the “the conditions in which people are born, grow, work, live, and age” (from above). While many articles report on errors in recording COD, this entry is not strictly concerned with coding errors (but see below for further discussion) (Adeyinka and Bailey, 2022; Morgan et al., 2022). Rather, it focusses on what is invisible on death certificates – on what is NOT counted, on what is silenced and hence on what is deemed to be irrelevant or insignificant. 

The repercussions of the lack of space for SDH on death certificates are stark, given that governments collect mortality data from these forms to plan and implement health care policy, and to allocate health and research funding (Brooks and Reed 2015: 74). Indeed, the lack of space for SDH on standardized international death certificates may help explain why health promotion and public health measures are the “Cinderella” areas of the health sector (Lewis 2005: 171). In a challenge to the limitations of US COD figures, the epidemiologists Michael McGinnis and William Foege (1993: 2211) note that the preponderance of health care expenditure “will be devoted to treatment of conditions ultimately recorded on death certificates as the nation’s leading killers”. On this topic it is relevant to acknowledge the well-established overreporting of cardiovascular deaths on death certificates (Pagidipati and Gaziano 2013; Lakkireddy et al. 2004). Attempts to create space for SDH within the parameters of current death certificates are canvassed and assessed later in the entry. There we will look at Z codes, what they facilitate in terms of reporting SDH, and what limitations they face. 

In this discussion it is important to keep an eye on the larger context and whether it is deemed to be desirable to encourage the “State” to acquire more and more information about its “citizens” and “others” (Foucault 1991). Bowker (1996:55) points out that “the ultimate cause of death” is “state-defined”:

“It was made explicit in 1932 that when there were two equal underlying causes of death (e.g., cholera and leukemia) then the cause that would be most useful to the state (in this case cholera, which was a matter of public health concern) would be taken statistically as the underlying cause.”

We appear to be caught in something of a cleft stick here – we either demand that social conditions be factored into COD decision-making processes and accept state-sanctioned surveillance, or we face exclusion from important research dollars and decision-making sites.

COVID-19, SDH and COD

The pandemic has driven home the association between SDH and COD. It has opened the floodgates on research highlighting the importance of socioeconomic conditions in COVID-19 death rates. Indeed, it has become commonplace to report that the pandemic has revealed ruptures and fractures in existing social arrangements – by class, age, disability, mental illness, gender, race, etc.

McGowan and Bambra (2022) provide a useful example. They produce a scoping review to identify and synthesise published evidence on geographical inequalities in COVID-19 mortality rates globally. A large majority (n=86) of the reported studies found that COVID-19 mortality rates were higher in areas of socioeconomic disadvantage than in affluent areas. McGowan and Bambra concluded that “COVID-19 has exacerbated endemic health inequalities resulting in a syndemic pandemic of higher mortality and morbidity rates among the most socially disadvantaged”.  Social disadvantage is captured in the concept of “deprivation” – “which is an area measure of poverty, low income, and a reflection of the wider social determinants of health (such as housing, working conditions, unemployment, health-care access, etc.) (McGowan and Bambra 2022: e968; emphasis added). This connection between SDH and COD via COVID-19 is well-established (Chávez-Almazán et al.2022; Dalsania et al. 2022; Figueiredo et al. 2020; Samuel et al. 2021; WHO 2021; Singu et al. 2020).

The question becomes – what follows from all this research? Where are the health policy interventions that attest to the impact of these comprehensive and well-supported analyses? Historically the track record on delivering on SDH is poor. Proponents seek to find explanations for what is commonly called the “know-do” gap, referring to the gap between what we know about broad social and economic patterns in population health (SDH) and what is being done – which is very little! Explanations for this inaction tend to target the apparent “lack of will” of those with institutional authority to implement SDH insights (Harvey 2006) and their possible ideological aversion to those insights (Raphael 2006; Bambra et al. 2005). 

Alongside these explanations, I suggest the need to pay more attention to structures of governance, including funding arrangements, because of the ways these practices shape social relations, subjectivities and policy outcomes (Bacchi 2008). In the particular case at hand, I argue that the operation of death certificates as governmental mechanisms helps to explain the invisibilization or silencing of SDH. In an earlier entry (30 May 2023) I apply the WPR questions to the standardized death certificate as “practical” text. There the case is made that current death certificates leave little to no room for reflecting on the social determinants of health (SDH). This theme of “silencing” is pursued in this entry. 

What else is missing from death certificates?

While this analysis is not specifically concerned with reporting errors, as already mentioned, it wishes to highlight the absences on death certificates (WPR question 4). It is a moot point whether these should be described simply as “errors” or whether they reflect systemic political imbalances.

Importantly, in some settings, the certificates themselves are missing. For example, higher income countries record all deaths, noting the causes on the death certificates. This is not the case worldwide. The problem of unrecorded deaths is particularly acute in low- and middle-income countries (Lang 2022). As Bowker (1995: 52) describes, the international classification of diseases (ICD), developed in 1893 and with ICD-11 as the latest update (WHO 2022a), imposes an imperialist reading of disease on the rest of the world.

In terms of specific “pathologies”, while mental illness is a factor in many deaths, it is almost never listed on death certificates. Psychiatric disorders are sometimes certified on death certificates, but they are seldom selected as the underlying cause of death. Goldacre et al. (2006) report that “The majority of deaths with a certified psychiatric cause are usually omitted from official mortality statistics, which are typically based on the underlying cause alone”. As a result, explain Vigo et al.(2016), 

“mental disorders appear to only account for 0·5% of total years of life lost, because GBD (Global Burden of Disease) estimates only reflect deaths directly attributed to mental disorders recorded in death certificates (mostly due to schizophrenia and substance abuse), which leads to zero global deaths attributed to bipolar disorder, depression, and other mental illnesses”.

Stirton and Heslop (2018) raise concerns about the accuracy and reliability of MCCD (Medical Certificates of Cause of Death) for people with intellectual disability, while Rockett et al. (2011) identify a grave need to improve the sensitivity of suicide certification in most countries. 

Manoeuvring within the system

A range of interventions in the COD field indicate both disquiet with the current certification process and suggestions for how to improve it. Introduced in 1954, “multiple causes” analysis is one such development. It targets all the causes of death on the death certificate, including the underlying cause and associated causes. The Australian Institute of Health and Welfare (AIHW) signalled in 2012 that “the use of multiple causes of death data to describe patterns of mortality is becoming more prominent”. Despite widening the parameters for diagnosis of disease entities, “multiple causes” analysis does not dislodge the primacy accorded the UCOD. It also clearly stays within the biophysiological paradigm. As Armstrong (2021: 1623) points out, while medicine has opened for inspection the chain of events leading to a death, in so doing it “has affirmed its own explanatory framework around death”.

Verbal autopsy and psychological autopsy aim to compensate for the inadequacies of death certificates in certain situations (thank you to Peter Mayer for this lead). In populations lacking medical certification, the WHO (2022b) recommends the use of verbal autopsy: 

“Verbal autopsy is an interview carried out with family members or caregivers of the deceased using a structured questionnaire to elicit signs and symptoms and other pertinent information that can later be used to assign a probable underlying cause of death.”

For equivocal suicide cases Rockett et al. (2011) suggest adopting psychological autopsy methods: 

“A psychological autopsy involves in-depth review of medicolegal records and follow-back interviews with family, friends and acquaintances of a decedent to look specifically for possible antecedents of his or her suicide or possible suicide.” 

Zhu et al. (2022) draw on a registry from the Korea Psychological Autopsy Center to show connections between suicide and social determinants of health in South Korea.

As with “multiple causes” analysis, verbal and psychological autopsy aim to assist in identifying COD. They remain within the biophysiological paradigm in which a notion of causality “singles out a pathological factor” (Timmermans and Almeling 2009: 23). 

Z codes: possibilities and concerns

The most explicit attempt to bring awareness of SDH to COD analysis is the introduction in 2015 of Z codes, which form part of the ICD’s (International Classification of Diseases) classificatory schema. In Australia the ABS (Australian Bureau of Statistics 2020) receives files from hospital Registrars with information about the deaths that were registered each month. The ABS then amalgamates and checks the records, assigns “cause of death” codes to each record, validates the dataset and produces statistical output. To put it bluntly, if a “condition” does not have a code, it does not get counted. The creation of Z codes is therefore a significant development and deserves attention.

The items available as Z codes are highly variable. They appear in a summary table produced by the CDC (Centers for Disease Control and Prevention 2021). Jacobs (2021) provides a useful introduction to Z codes and his concerns about their limitations. He argues that many of the existing codes are far too generic, such as Z59.8 (low income), “which encompasses a wide array of financial issues, each requiring a distinct solution”. He also points out that, in the US, Z codes are rarely used. This lack of uptake is linked to the reluctant adoption of Z codes by health care providers (True 2021). It seems that, if a coded item isn’t funded, it isn’t used – understandably! At the same time, the American Medical Association, UnitedHealthCare, and the American Hospital Association have petitioned to expand Z codes to capture a broader range of SDH and with greater specificity (Jacobs 2021: 3206), suggesting a brighter future for Z codes.

Below I have produced two sample lists (1 & 2) to indicate the range and nature of specific Z codes. Sample list 1 points to the ways in which some Z codes appear to target “structural determinants” of health. The items on this list indicate support for a critical SDH that emphasises the role governments play in creating specific social, economic and environmental contexts that help to make people either “ill” or “well” (Bacchi 2009: 135). 

Sample list 2 contains items where the target for change is the individual (or their parents) rather than living and working conditions. By contrast with Sample list 1, it identifies social factors that work through individual behaviours, commonly referred to as “risk factors”. This variability in Z codes signals the diversity of positions within SDH, identified by Yadavendu (2013) as a shift from “holism” to “individualism”:

“The older, philosophical approach in public health involved a holistic, population-based understanding that emphasized historicity and interrelatedness to study health and disease in their larger socio-economic and political moorings. A newer tradition, which developed in the late 19th century following the acceptance of the germ theory in medicine, created positivist transitions in epidemiology. In the form of risk factors, a reductionist model of health and disease became pervasive in clinical and molecular epidemiology.”

Z codes: Sample list 1 

Z55.1 Schooling unavailable and unattainable

Z56.3 Stressful work schedule

Z56.81 Sexual harassment on the job

Z57.0 Occupational exposure to noise

Z58.6 Inadequate drinking-water supply

Z59.1 Inadequate housing

Z60.5 Social exclusion and rejection

 

Z codes: Sample list 2

Z55.3 Underachievement in school 

Z59.2 Discord with neighbors, lodgers and landlord

Z60.0 Problems of adjustment to life-cycle transitions

Z62.1 Parental overprotection

Z62.891 Sibling rivalry

Z63.5 Disruption of family by separation and divorce

Z72.3 Lack of physical exercise 

Z72.51 High risk heterosexual behavior

Z72.52 High risk homosexual behavior

To deal with this plurality of perspectives, I suggest treating each Z-coded item as a proposal, in the WPR sense of the term, and submitting it to a WPR analysis ( KEYNOTE ADDRESS – CAROL BACCHI – 17 August 2022). Collectively, the sample lists also signal the need for concern about the accumulation of highly personal information for the purposes of governmental administration.

Finally, to repeat a theme running through this entry, to the extent that Z codes aim to offer causes of disease entities, they remain within what Armstrong (2021) calls “the pathological explanation”. The focus remains on disease entities rather than on the conditions a person lives in and with – the social and environment conditions that shape their lives, not just their deaths. The task becomes shifting from a conception of health as absence of disease to health as a “state of complete physical, mental and social wellbeing” (WHO 1946). 

Returning to the pandemic

I opened this entry by highlighting the extensive research attesting to the impact of socioeconomic conditions on COVID-19 death rates and queried the policy interventions that might usefully follow. Here I consider the extent to which a governmental response adopted in many countries, testing and contract tracing, pays heed (or not) to SDH.  

I draw on the work of Richard et al. (2023) who set out to evaluate the space for a focus on SIH (social inequalities in health; a proxy for SDH) in the design of testing and contact tracing (CoviTCT) protocols in France. Health inequalities, such as differences in life expectancy by social groupings, are seen to be the outcome of SIH (Marmot 2005).

Richard et al. (2023: 8) explicitly invite readers to approach the testing and contract tracing response as a problematization. They point out that, as a proposal, CoviTCT centres on the virus and contaminants. The primary goal is to break chains of transmission. 

Such a representation of the problem, they argue, participates “in (re)producing a predominant clinical framing (Benford and Snow, 2000) of the pandemic situation” (Richard et al. 2023: 8; see Townley et al., 2023). 

While the “key informants” interviewed by Richard et al. (2023: 5) adopted positions on a continuum ranging from a biomedical to a health promotion vision, a SIH perspective emerged only as a complement to the clinical epidemiological strategy of the CoviTCT intervention.  As a political response Richard et al. (2023: 9) stress the need to elevate the importance of SIH reduction approaches:

“From a dual perspective of social justice and epidemiological coherence, the COVID-19 pandemic has highlighted that SIH need to be considered as the basis of infectious diseases response, regardless of the emergency context.” 

In terms of effects (WPR question 5), interventions that aim to control the transmission of the virus tend to produce a focus on what Waleed Aly (2020) calls the “symptoms” of COVID-19. We are encouraged to see “technologies” such as CoviTCT as “solving” (albeit in a piecemeal fashion) the “problem” of contagion. There is no space in this reactive approach to consider how we have got here – how pandemics, for example, are an increasing likelihood due to a range of practices such as deforestation (Zimmer 2011). 

None of these comments suggests that we do not need testing and contact tracing. The point is to see how such a proposal/intervention creates the “problem”, what it assumes and what it leaves out. This approach could profitably be applied to other public health interventions, such as social distancing, mask wearing, working from home and “hard” lockdown (Kelaita et al. 2023). 

Tasks for another day

To argue, as I have done, that death certificates need redesigning to acknowledge explicitly the place of SDH does not on its own indicate what ought to be included on, or dropped from, the form. Rather, it highlights the need to encourage conversations on the design, assumptions and effects of this governmental mechanism. On the one hand there is a need to reflect on the limitations of a death certification process that “forces the use of a chain of linear, single diagnoses to describe the complex process by which people live and die” (Merlin et al. 2022: S37). On the other hand, there is an opportunity to engage with those who argue that this decontextualizing of death may be “an inevitable way of getting things done in medicine” (Timmermans and Almeling 2009: 23). 

In the short term, it is interesting to consider what might follow from encouraging doctors to use Z code categories carefully when they fill in death certificates. I say carefully, of course, due to the possibility of lapsing into individual behavioural categories of analysis and the possibility of extracting personal information that has no business being included on administrative forms of any kind (discussion above). Navigating the edges of the cleft stick I mentioned earlier is doubtless a challenging task for all of us.

I would be keen to hear reactions to the last three Research Hub entries on COD (Cause of Death). Have they managed to pique your interest in the political implications of standard administrative forms such as death certificates? Please contact me at: carol.bacchi@adelaide.edu.au or subscribe to the WPR list (see this link:  Welcome to the WPR Network! | Karlstad University (kau.se)

In the next entry I intend to deliver on my promise to examine what happens when WPR is applied to WPR. 

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