The ‘equity turn’ and bereavement: From rhetoric to realisation

Introduction

The ‘equity turn’ continues to unfold within end-of-life and palliative care ¹ ; bringing recognition that all are not positioned equally in dying, caring and grieving. Historically, the ‘doubly vulnerable’ have been neglected – those made vulnerable as they face the complex sequelae associated with a life-limiting illness, alongside existing disadvantages produced by deficits in the social determinants of health. ² Dominant models of palliative care service delivery have thus typically evolved to serve a specific positionality, often associated with whiteness, having cancer, strong social support, and adequate financial resources to supplement care. ³ Such positioning not only increases the likelihood of receiving appropriate symptom management, high-quality care and the ability to die in the location of one’s choosing, but shapes experiences of bereavement and support following a death. ³ The bereavement field, including related research, practice and service delivery, has not yet engaged deeply with this equity turn. Experiences of illness, caring and pre-death interactions within settings of health care constitute the substantive focus of empirical equity-oriented inquiry and practice to date. Consideration of political and sociological issues that inflect bereavement is relatively recent, including themes of social justice and inequality. ⁴ Indeed, there is a significant benefit in generating new knowledge that can help understand how determinants of privilege, marginalisation and disenfranchisement shape lived experiences of bereavement and support. ⁵

Bereavement experience is socially, culturally and structurally situated and differentiated.^5–7 Limited existing work demonstrates that structural vulnerability, a positionality associated with systemic biases and unequal, intersecting social locations such as class, sexual identity, ethnicity and gender, can generate and replicate disadvantage and suffering in bereavement, including forms of financial strain, housing insecurity and poor psychological well-being. ⁸ Yet reflection on the state of the bereavement field surfaces the functions of dominant theoretical orientations, paradigms and systemic biases with equity implications, that demand critical attention.

Prevailing orientations, paradigms and biases with equity implications

Primarily developed within dominant western, colonial contexts of human service provision and research, formative constructions of bereavement experience, support and models of care have evolved within a ‘health-centric’ paradigm. ⁶ Privileging forms of biomedical knowledge and the clinical interpretation of bereavement, grief has been framed as a fundamentally internal, intra-psychic experience ⁹ ; leading to the prioritisation of individualised approaches to ‘interventions’ and care ⁷ ; and disenfranchising a diversity of experiences, positionalities and relational contexts. Coupled with resourcing constraints and administrative processes common within health landscapes, such an orientation produces a focus on the primary family contact (or ‘next of kin’) of a deceased person in follow up support and service provision, uncritically aligned with traditional conceptualisations of biological ‘family’. Wider notions of relationality are thus obscured, ⁷ such as ‘fictive’ or ‘chosen’ family, of particular significance within vulnerably positioned populations. ¹⁰ Individualised, ‘health-centric’ approaches to bereavement care perpetuate the notion of the ‘autonomous individual’ at the centre of neo-liberal systems of care ⁷ ; assuming personal agency is unconstrained and can be freely enacted to seek meaningful support. This orientation also produces an under-attention to forms of authentic collaboration with community-based organisations or networks engaged in bereavement beyond the remit of health service provision, neglecting opportunities to cultivate constellations of support that better reflect a diversity of preferences and needs.

Relatedly, approaches to conceptualising and identifying and ‘complexity’ in bereavement have been permeated by the ‘psy’ disciplines, ⁴ driving the proliferation of psychological and psychiatric theoretical perspectives and methods. A pervasive, ‘risk-laden’ discourse has fuelled a preoccupation with screening tools and the capacity to predict complex psychological outcomes following a death; chiefly equated to Prolonged Grief Disorder. As the primary method of ‘prediction’, screening processes and measures are frequently assumed to be possible to appropriately undertake during the often-confined windows of time in which soon-to-be or recently bereaved people are engaged with health services (often in settings of specialist palliative care or acute health care), before or after a death. Putting aside myriad other problematic issues, screening pursuits assume that vulnerably positioned individuals engage readily with health services and do not face barriers that hinder engagement with formal institutions; known to be associated with intergenerational experiences of discrimination or oppression and to engender mistrust, ⁴ stigmatisation and exclusion. ¹¹ Even where engagement occurs, screening approaches also often neglect attention to social and structural factors that may long pre-date contact with health or social care services, and forms of inequity that may produce suffering much later into bereavement, beyond engagement with these services. Such approaches are incongruent with broader, much-needed conceptualisations of ‘risk’ and ‘complexity’ in bereavement: cognisant of layered social and cultural contexts that influence collective meaning-making ⁶ about perceptions of distress, and socio-historical determinants of oppression and inequity (e.g. the dispossession of First Nations peoples) that shape inevitably intertwined experiences of trauma and loss.

Additionally, forces of structural ethnocentrism, heterosexism and classism continue to shape approaches to bereavement support and service provision. Recent work has importantly illuminated ways in which models of bereavement support in end-of-life and palliative care tend to be somewhat euro-centric, under-accessed by minoritised populations, ¹² and informed by limited available evidence regarding these groups. ¹³ LGBTQIA+ bereaved often navigate additional legal and financial stressors following a death, yet encounter systemic stigma and discrimination within forms of existing bereavement support. ⁸ Access to bereavement services is frequently inconsistent, and often contingent upon engagement with formal health services prior to a death, such as in the context of caring for someone with a life-limiting illness – which again disadvantages those more likely to encounter barriers to engagement with institutions or services in the context of past experiences of discrimination, oppression or (re)traumatisation. Furthermore, the choice to access forms of specialist support (e.g. therapy or counselling) for those with bereavement needs experienced as complex is often constrained not only by limited availability, ¹⁴ but by associated financial cost. ¹⁵

Recently, public health approaches have been lauded as centering the intrinsically social and relational nature of bereavement while facilitating sustainable engagement with and distribution of often scarce resources. Public health models of bereavement seek to re-engage communities in care and advocate engagement with support according to need; from the ‘universal’ and less intensive needs of most people (e.g. collective rituals of remembrance, psychoeducation), to the ‘complex’ and more intensive needs of a few (e.g. specialist counselling and mental health interventions). ¹⁴ While public health approaches are imbued with positive potential for equity-informed bereavement care, they have not widely attended to groups already poorly served by palliative care services. ¹¹ Given that internationally, investment in bereavement support and services is known to be inconsistent,^14,16 further work is needed to ensure forms of accessible, meaningful and inclusive support actually exist across the spectrum of bereavement needs. Furthermore, public health models have been interpreted as justification for restricting access to forms of more intensive support to those who meet particular criteria (e.g. diagnostic criteria for Prolonged Grief Disorder). This is inherently problematic for those who are vulnerably positioned and experiencing related forms of suffering, yet who may not meet defined ‘criteria’ at a specific time point, despite potentially benefitting from more intensive or specialised forms of support. Furthermore, within societal contexts saturated by economic austerity and neo-liberal logics, the potential to engage community and social networks as a ‘cost-efficient’ solution to meeting a range of bereavement needs holds seductive, albeit problematic appeal. Shifting responsibility heavily in this direction risks implying public systems and institutions can be absolved of their responsibility to address structural determinants of poor well-being that may complicate bereavement experience, including inequitable social policy that reinforces and reproduces discrimination and disadvantages in bereavement. ¹⁷

Realising the ‘equity turn’ in the bereavement field

Given known and persistent under-resourcing, ¹⁴ the bereavement field is frequently considered a ‘poor cousin’ of other priorities related to end-of-life and palliative care. ¹⁶ The global pandemic illuminated known gaps in existing systems of bereavement support; sharply foregrounding the social and structural determinants of death, dying and bereavement, ¹⁶ and profoundly underscoring the need for reform of related policy and practice. With rapidly ageing populations and increasing diagnoses of life-limiting illnesses, more will face bereavement while concurrently working, parenting and caring for others, ¹⁸ in the context of diverse landscapes, loss experiences and positionalities. More authentic, rigorous engagement with the equity turn within the bereavement field should be an urgent priority, and will require ongoing, enacted forms of ‘humble’ ⁶ reflection across multiple domains of concern, to avoid tokenistic approaches to equity and inclusion that entrench rather than critically evolve practice and research.

The social and relational dimensions of bereavement continue to be relatively obscured in conceptual, empirical and practice pursuits, particularly as these pertain to structural vulnerability. There is an evident need for rich exploration of ways in which the emotional, social and material experiences and sequelae of bereavement intersect with societal relationships and roles (including participation in paid and unpaid forms of labour), spiritual and cultural networks, public institutions, and other socio-historical-political contexts. In-depth understanding of these dimensions that presses beyond ‘measurement’ of access, disadvantage ¹ or mental health outcomes is warranted, to critically elucidate lived experiences of vulnerability, stigma and precarity in bereavement. This knowledge should also inform and drive advocacy regarding upstream, structural forces that generate inequity in bereavement, such as poorly constructed social policy that fails to recognise the economic value of caring. ¹⁷

Approaches to conceptualising and responding to ‘complexity’ in bereavement require critical interrogation. The extent to which broader social, cultural and structural factors influence experiences of bereavement that are associated with significant suffering is underexplored, and a recognised evidence gap. ¹⁹ A nuanced conceptualisation of complexity should consider an intersectional framework ⁵ and contemplate the role of diverse knowledges (beyond those of a biomedical or clinical nature), where bereavement is subjectively experienced as particularly difficult. This work must also attend to overlapping axes of power and culture which may contribute to grief responses deemed as “divergence from culturally-normed grief expressions”. ^{5 (p9)} Such knowledge could inform critical development of a broader base of bereavement practices and therapeutic modalities where more intensive support is sought, recognising Prolonged Grief Disorder as but one possible manifestation of ‘complexity’ following a death.

Rigorous reflexivity regarding models of bereavement service provision will also be central to realising the equity turn. Rich understandings of multiple ways in which diverse and vulnerably positioned populations experience existing forms of support are needed, including the role of past and present structural oppression, sociopolitical forces and intergenerational experiences. The corollary should not simply be the perpetuation of calls for poorly bereavement resourced services to actualise ‘culturally appropriate’ service provision and better demonstrate the value of their work according to metrics and principles of existing, overarching paradigms. What is needed are methods that enable open, iterative exploration of ways in which individuals and organisations engaged in bereavement support can authentically decolonise practice and research, beginning with critical acknowledgement of the dominant forms of ‘expertise’ and knowledge that have pervaded understandings of and approaches to bereavement. ⁴ Extending and enacting components of relational ethics within approaches to bereavement care possesses potential to facilitate embodied, mutually respectful interactions, through making visible the structural conditions that shape values and beliefs, and constrain choices in bereavement. ²⁰ How we approach and cultivate meaningful, cross-sectoral relationships, beyond settings of health service provision, will be integral to this work – across bereavement services, social services, research networks and community-based bodies, to enable forms of empirical work and practice underpinned by authentic connection, collaboration and care.