Building Death Literacy Through Last Aid: An Examination of Agency, Ambivalence and Gendered Informal Caregiving Within the Swedish Welfare State

ABSTRACT

In the last two decades, health promotion strategies have gained significant attention in end-of-life care contexts—engendering greater focus on community and informal care in policy and healthcare spheres in liberal welfare-states. The emergence of health-promoting palliative care (HPPC) in the Nordic context presents a unique challenge to the abiding social contract of care which emphasizes the de-familialisation of child- and long-term care. This study reflects upon the implementation of one HPPC inspired educational initiative, called Last Aid, into a Swedish context and its influence on social relations of care within the welfare state model. Participants articulated Last Aid as a tool which helped them reclaim agency amidst the inertia of competing norms and expectations of informal caregiving. These findings indicate that the implementation of Last Aid into the Swedish context is characterized by a tension between norms of institutional caregiving versus community caregiving, representing a case of sociological ambivalence. Furthermore, the data shows that women disproportionately perform informal caregiving for seriously ill significant others in an institutional context where state care services are diminishing. Employing a feminist analytical approach, these results, and the HPPC perspective, are discussed in light of trends towards welfare retrenchment in the Nordic countries.

KEYWORDS:

• Palliative care
• informal caregiving
• care ethics
• welfare

Introduction

Community perspectives on end-of-life care have grown in focus in research and practice since the introduction of the “health-promoting palliative care” (HPPC) approach in the late 1990s. HPPC represents a public health perspective on end-of-life which urges forward a more holistic understanding of palliative care, considering health to be determined by not only physical factors, but also by social environments (Abel, Kellehear, et al., 2018; Kellehear, 1999). Therein, communities and families play an equally important, but different, role in caregiving and support as nurses and physicians. HPPC interventions seek to levy the caregiving potential of communities through increased education, awareness, networking and volunteerism—thereby buttressing healthcare systems which are not equipped to adequately care for the increasing population of older adults in the West (Abel, Kellehear, et al., 2018). While HPPC has become a popular working paradigm in, for example, Australia, the United Kingdom and Canada, there have been few empirical studies exploring the gender implications of such an approach (Mills et al., 2015), or the translatability of such interventions into the Nordic cultural context and welfare state model. The Nordic welfare model has been described as a “woman friendly” model because of its focus on de-familialisation and expansion of formal care institutions; however, feminist scholars have a levied strong critique against this moniker as un-inclusive and overly simplistic (Elomäki & Koskinen Sandberg, 2020; Hansen et al., 2022). Although caregiving is substantially covered by formal services in the Nordic countries, it does not follow that the remaining division of informal care work is necessarily gender neutral, or that everyone has equal access to welfare services. Such is the case with childcare in Sweden, where parental leave is unequally expended on gender, race and class lines (Haas & Hwang, 2019; Lidbeck et al., 2018). In examining a HPPC intervention, it is possible to gain insight into how caregiving is negotiated and performed at home during a period of life which, in many ways, is characterized by an similar amount of dependency as infancy but less frequently understood as a gendered issue. This paper examines the implementation of an HPPC initiative, called Last Aid, in Sweden, in the context of the regional and municipal welfare state model of care. Last Aid is a course designed to educate communities in end-of-life issues and enable early planning for death and more comfortable dying at home (Bollig et al., 2019). The course is oriented around building “death literacy,” which is defined as “a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options” (Noonan et al., 2016, p. 1).

The aim of this study is to demonstrate, through empirical example, how a community-based intervention to increase knowledge and care around dying is perceived by participants and practitioners in a Swedish municipality, and how this intervention fits into current social relations of care within the welfare state context. An action research approach is employed in order to investigate these questions, as well as theorize how Last Aid can be implemented in future public health strategizing. Informal caregiving in the palliative care context can entail a diverse array of tasks which could include but are not limited to: shopping and transportation, household tasks, personal care and nursing, finances, administration of medicine, and indoor mobility over a period of days, months, or years (Wolff et al., 2007, p. 42). For certain diagnoses, such as cancer, informal caring can require intensive work over a short period of time (Payne et al., 1999). It is argued here that public health initiatives, like Last Aid, which aim to strengthen informal caring, are in tension with the formalized landscape of caring relations in the Nordic welfare regimes, representing a case of “sociological ambivalence” where gender is a primary arena upon which this ambivalence takes place. Connidis and McMullin (2002) understand sociological ambivalence as a dialectic of both “individual strain” and “structural pressure” characterized by “simultaneously held opposing feelings and emotions” (pp. 558–559). Within their theoretical understanding of ambivalence, individuals are understood as “actors who exercise agency as they negotiate relationships within the constraints of a social structure” (Connidis & McMullin, 2002, p. 558). As Last Aid is a project intended to empower acts of care through knowledge, agency can similarly be viewed as an outcome measure for such an intervention (Razum et al., 2016). Using this definition of sociological ambivalence, the experiences of course participants and practitioners in learning and teaching Last Aid can be broken down into three different foci: agency in the domestic sphere, agency in healthcare, and agency in society.

This paper will begin with a brief background on social relations of care in the Nordic welfare regimes, a theoretical background to HPPC, and feminist conceptualizations of agency and care. Then, the context of the case study and data collection will be detailed, followed by an analysis broken into three parts. The paper will conclude with a discussion of present and future challenges in implementing HPPC initiatives in the Nordic countries. The data will be analysed and discussed from a critical feminist perspective on care and welfare (Fraser, 2013; Hansen et al., 2022; Hansen & Jansson, 2022; Hochschild, 1995).

Background

Gendered caregiving within the Swedish welfare state

The Swedish welfare state represents a unique context for investigating the importation of HPPC models because of its history of formalizing caregiving. Feminists in the early 1900s manifested a family policy regime and vast institutional childcare infrastructure which rested on the principles of de-familialisation and universalism as part of a struggle to expand their possibilities outside of the home (Lundqvist & Roman, 2010). However, the last three decades have been characterized by a sea change in policy direction, wherein informal caregivers rather than institutions have become the targets of greater state support. This is emblemized in recent increases in subsidies given to family members caring for a sick relative (Johansson et al., 2018; Szebehely, 2005), which stands in contrast to the 20^th century focus on strengthening service provision from public entities (Hansen et al., 2022). This can be interpreted as a shift from de-familialised “politics of needs interpretation” (Fraser, 2013) to a re-familialised politics of needs around sick significant others.¹ Meaning that the political discourse of care has been re-scripted as a need internal to the family, rather than the responsibility of state institutions (Szebehely & Meagher, 2017). This dynamic has been similarly described in terms of the “enabling welfare state” (Gilbert & Gilbert, 2002, p. 32), where governing principles become more oriented around enabling people to work and take private responsibility for wellbeing. This reorientation of norms evidences how modern welfare programmes are subordinated to economic considerations, such as: “the need for labor force flexibility, the opening of new markets for the private sector, the pressures of international competition, and the imposition of limits on deficit spending” (Gilbert & Gilbert, 2002, p. 43).

Policy regarding the long-term care of older adults is relevant to individuals in the end-of-life as most dying people are above the age of 65 in Sweden (Fürst & Lindqvist, 2014). Long term care for older adults in Sweden is primarily administrated by municipalities (nursing homes and home care), while palliative care is nested in the regional healthcare authority. While the institutionalization of childcare was a key ingredient for women’s liberation in the early 20^th century, the successive institutionalization of care for older adults in 1964 was politically framed as an initiative to give older persons “economic independence”, “housing” and “personal care” (Ulmanen, 2013, p. 73) – a politics of needs interpretation detached from the issue of women’s domestic caregiving. Today, family has re-emerged as a key source of caregiving in policy on the care of older adults and the subsidization of relatives’ caregiving is paralleled by diminishing public care services for older persons (Johansson et al., 2018; Szebehely & Meagher, 2017). However, the threat posed to women’s autonomy and employment as a consequence of subsidized family caregiving has not been connected to the decline of institutional care in policy documents (Dahl, 2017; Ulmanen & Szebehely, 2015; Ulmanen, 2013). It’s been estimated that today, the majority of older adults in need of support receive help primarily from family members (Johansson et al., 2018). Of these family members, working class Swedish families rely mostly on the labour of middle-aged daughters to provide care to parents (Ulmanen, 2013). It is clear that welfare state retrenchment in the last five decades have increased class and gender inequalities.

Health promoting palliative care and Last Aid

“Last Aid” is a European educational concept which aims to educate non-professionals in basic skills related to caring for seriously ill people and grieving significant others (Bollig et al., 2019). Like First Aid, the course content is framed around improving health literacy—or in this case, “death literacy”, in the general public (Noonan et al., 2016). Research suggests that increased death literacy in communities can lead to better living while dying because communities with more knowledge about end-of-life issues have the tools to activate supportive social networks around vulnerable people and provoke earlier end-of-life decision making (Noonan et al., 2016). Death literacy is therefore a precondition for agency in community caring. A growing body of literature indicates that improving death literacy, and community capacity for caring, through initiatives like Last Aid, can improve a community’s collective ability to better respond to the needs of seriously ill and grieving individuals, and improve their quality of life (Abel et al., 2013; Bollig et al., 2019; Mills et al., 2015). The half-day long course consists of four modules: Death as a normal part of life, Planning for the future, Relieving suffering, and Saying goodbye. The goal of the course is to equip people in the general public with more knowledge about end-of-life and thereby improve their ability to ensure better dying at home.

Developing death literacy and community capacity for care is part of the growing programme for Health Promoting Palliative Care (HPPC), a public health paradigm which underscores the importance of community “ownership” and “agency” in caring (Mills et al., 2015, p. 219). This public health perspective on palliative care has grown substantially in focus as scholars in the field have indicated that communities represent an important resource in meeting the complex care needs of a rapidly ageing population. HPPC has been operationalized in the “compassionate community movement” (Kellehear, 2005). Kellehear, who coined the term, describes a compassionate community as a community which recognizes end-of-life care as “everyone’s responsibility” (Bollig et al., 2019, p. 3). Therein, he urges forward a model of “citizen” oriented care in the end of life (Kellehear, 2005, p. 21). HPPC projects like compassionate communities can be built through a variegated set of strategies such as: the creation of volunteer networks, educational programmes, cultural events, and integration of supportive policies in schools, workplaces, and healthcare settings, to name a few (Clark et al., 2017) – Last Aid being one such example.

Community capacity building from the HPPC perspective does not entail the prescription of care work solely from relatives. Broadly defined, a community can include family, friends, neighbours, the voluntary sector and other forms of collectivities (Barnes, 2012). An example of growing relevance in the elder-care sector are “befriending services” run by volunteers, which have come to address the needs of many older persons who live at home alone (Barnes, 2012, p. 95). However, the volunteer sector is also a highly gendered space, especially in care, where women represent the majority of contributors (Hansen et al., 2022). The large proportion of sick elderly who live in single person households in Sweden (SCB, 2020) has provoked a rising need for extra-familial, shared activities that offer “the benefit of reciprocal support” (Barnes, 2012, p. 95). In previous HPPC-inspired initiatives, volunteer and support groups have been leveraged to support people coping with serious illness or bereavement, such as in the Compassionate Frome Project in England (Abel, Kingston, et al., 2018) or in the Good Neighbor Project in Ireland (McLoughlin et al., 2015). In the case of Frome, these support groups were mostly naturally occurring (i.e. bereavement groups, book clubs, stroke groups) but when gaps were identified, new collectives were fostered. The Good Neighbor Project employed a similar approach wherein volunteers were recruited into the project, given training, and then dispatched to carers and patients to assess needs and then connect them to the relevant community resources in addition to creating a “plan of action” (McLoughlin et al., 2015, p. 5). While there are variegated examples of such initiatives in practice—for example, intentional residential communities, collectives, or support groups—such strategies for care are still highly peripheral to more traditional sites of care, such as the nuclear family unit or healthcare institutions. In a Swedish context, where individuals with care needs rely mostly on the labour of significant others outside of healthcare institutions, Last Aid could have the effect of fortifying inter-familial care over broader forms of community support.

Feminist conceptualizations of care and agency

As is the case with health literacy, death literacy-focused interventions aim towards empowering individuals’ ability to make informed choices through strengthening knowledge. Health literacy is theorized from the viewpoint that “health is a social product, and that maintaining it requires social or political action” (Razum et al., 2016, p. 278). The efficacy of literacy-based interventions is necessarily a reflection of individual agency to make “healthy” choices in a given socio-political context. Moreover, one’s individual agency to maintain health holds a mirror to social power (Bay-Cheng, 2019), as well as the welfare services that make health more or less possible. As McNay (2004) articulates: “Since individuals are never situated on a single axis of gender, racial or ethnic oppression then the only way in which the operations of these forces can be examined is from the level of social action. It follows that the idea of agency is a key mediating category through which the inter-connections between cultural and economic forces, identity formations and social structures can be examined” (p. 177). It is for this reason that agency has a strong analytical presence in the feminist theoretical traditions none-the-least in examining structural oppression in everyday lives (Harris & Dobson, 2015). As argued in this paper, the presence or lack of agency within lived social relations, such as in interfaces with healthcare institutions or in informal caregiving situations, is an important window through which structural forces are made visible—in this case, welfare and gender (McNay, 2004). Similar feminist research on the care sector has argued that gendered meanings and identities can influence carers’ agency in dependency work (Husso & Hirvonen, 2012), in turn shaping the construction of gender as a performative category in care (Selberg, 2012). In the context of close and kin-based relationships, gendered meanings relating to care and responsibility often produce an ambivalence circumscribing individual agency in dependency work. As Connidis (2015) avers, the maintenance of close relationships is textured by the “coexistence of contradictory sentiments, expectations and forces” which reflect upon how social life is structured in a highly gendered way (p. 77). The concepts of ambivalence and agency, especially in their interrelationship, are therefore useful heuristics for analytically linking micro-, meso-, and macro-level processes (Connidis, 2015, p. 78). In parallel to this contemporary feminist work on both formal and informal care, this study further develops how a death literacy-focused intervention impacts carers agency along a gendered axis.

Methods

This case study focuses on the work of four course practitioners (including the author of this paper) in organizing and teaching Last Aid and the experiences of course participants. A six month period of running the course and reflecting in focus groups constitutes the “bounded system” demarcating the case study (Gomm & Martyn Foster, 2009, p. 23). Case studies are useful methodologically for testing hypotheses and reflecting upon the complexity of phenomena which involve a “myriad of not highly isolated variables” (Gomm & Martyn Foster, 2009, p. 24). Such is the case for this study, which attempts to capture the unique social occurrence and implications of an HPPC-inspired intervention from both a practitioner and participant perspective. Such cases are best captured through a blend of data inputs such as “personalistic observation” and “verbatim quotation” and for this reason, this study incorporates a mixed-methods approach comprising action research (AR), focus groups, and participant observation (Gomm & Martyn Foster, 2009).

Data collection

During a half year period, three courses were organized by the practitioner team (two on-site and one online). On-site courses were organized with consideration to COVID-19 health precautions. Three semi-structured focus groups were conducted: two with course participants from the on-site courses, and one with the course practitioners. The focus groups were recorded and then transcribed verbatim. Written consent was obtained by all focus group participants. Fieldnotes were gathered by the author during courses and planning meetings with both practitioners and local collaborators (including a local hospice association, the municipality, and the local hospital). Course participants were informed via email beforehand that notes would be taken during the course as part of a research study. Verbal consent was obtained during meetings to take notes. The first course had 17 participants, the second course had 25, and the last (online) course had 10 participants. On average, 75% of the participants were female. According to the course evaluations, which had a 68% response rate, 63% were between the ages of 50 and 79. A total of 10 people were included in the focus groups for course participants, three were male and seven were female. Of them, 60% were retired. The practitioner team consisted of one female doctor specialized in palliative medicine, one female nurse working in her palliative care team, one retired male doctor, and the author of this paper. All participants are de-identified in this study.

In line with an AR approach, the data collection in this case study is influenced by the direct participation of the researcher in the study environment, wherein she occupied a “double position”: being an “insider” to the initiative (administrating, planning and conducting public outreach) but also attempting to take an “outsider” positionality (studying and observing) in order to “retrieve neglected insights and/or gain new ones” (Dahl, 2022, pp. 22–23). For example, the researcher was able to gain insights from other practitioners regarding healthcare perspectives, but the author, not having a professional background in care, was not entwined in thinking about the course in terms of its compatibility with existing care-institutions, their prerogatives, and a view of participants as potential “patients”. This externality to medicine afforded the researcher the opportunity to more critically investigate the role of medical thinking in developing the course, as well as explore the merits of the course in its relation to civil society and partners from other professions (such as social work).

AR is a form of disciplined inquiry which produces knowledge necessary for people to improve lives. It is therefore extremely relevant for work in healthcare and community development (Koch et al., 2002). Within the AR component to this study, practitioners were invited into an iterative process of reflection and development in order to change practice within a community of stakeholders via an educational intervention (Bradbury, 2015; Gatenby & Humphries, 2000). In contrast to a participatory action research (PAR) approach, this AR methodology did not include participants in this iterative process of planning, reflection and development, apart from the focus group interviews. That is to say, practitioners were given interpretative power in implementing the action, but not the individuals who participated in the chosen intervention. Action research has been described as a “practice-changing-practice” (Kemmis et al., 2014, p. 2). The “practice” addressed by the practitioner group was palliative care provision and a perceived need to add a health promotion perspective. The intervention for change was Last Aid and death literacy is a window through which to view this change. Course participant perspectives were obtained via two focus groups and participant observation allowed the researcher to take into account social dynamics at play in the courses. Researchers increasingly employ mixed methods approaches to understand complex phenomena, and this is also true in the case of AR which is often used in tandem with other methodologies in health research (Westhues et al., 2008). This is done to present outlooks from multiple stakeholders, and capture a more holistic view of the field. Practitioner perspectives are uplifted in the analysis of this study to abet the themes identified by participants, addressing their agency in different settings.

As Kemmis et al. (2014) describe, many AR studies seldom follow Lewin’s traditional spiral of planning (planning a change, acting and observing the process and consequences of the change, reflecting on these processes and consequences, and then re-planning, acting and observing, reflecting, and so on …) (p. 18). While following such a programme can be useful, Kemmis et al. (2014) argue that the most important characteristic of AR is creating a space where practitioners can engage in a “disciplined” form of change-making—and this process, depending on context, can move unevenly in Lewin’s spiral of planning (p. 16). The planning of the Last Aid initiative has not followed a strictly linear path, but it did incorporate the components of Lewin’s spiral model. The idea to implement this course was germinated in a pre-existing project aiming to create greater awareness and education around palliative care in the chosen municipality—comprising mostly healthcare professionals as well as representatives from a local hospice association. This group, including the author, came to a consensus that death literacy was an important dimension to improving palliative care and manifested a problem formulation around the lack of knowledge on end-of-life issues in the general public, where Last Aid was posited as a relevant intervention. Collaborators from the municipality were invited in via successive planning meetings. The planning meetings acted as spaces where practitioners could organically reflect over courses and contemplate understandings of death literacy as a collective issue and ask critical questions related to “whether their practices, and consequences of their practices, were educational” (Gatenby & Humphries, 2000, p. 90). The action concluded in a focus group with practitioners where they could summarize their reflections on the project and pathways forward.

An exploratory, inductive approach was undertaken in analysis (Guest et al., 2012). Data was coded according to manifest concepts (Graneheim et al., 2017) and then thematically categorized in an “iterative” process of sorting, where multiple sub-themes were further condensed into larger categories of meaning (Guest et al., 2012, p. 53). The codes generated in this sorting process had descriptive as well as analytical qualities, reflecting a theoretically informed reading of the texts (Selberg et al., 2022). Here, descriptive themes were seen to condense around the theoretically informed categories of public versus private life, and agency to move around within these spheres.

Ethical approval for the study was granted from the Swedish Ethical Review Authority (ref: 2020–02545).

Results

Agency in the domestic sphere

For many participants who took the course to learn about or reflect upon caregiving for an ill significant other, the course provided a set of knowledge which helped reconcile ambivalent expectations of themselves as caregivers and their ability to deliver the best care possible. This was by and large expressed by women in focus groups. In the course evaluations, one participant described the course as “freeing me from guilt”, and another elaborated on how the course provided validation for her experiences caring for a relative:

I got more validation for what we went through with my father-in-law. He was in palliative care … We had done that and that, and we did the best for him that we could and I know he had a dignified death at home. (Female, age 48)

For this focus group participant, Last Aid alleviated the inner conflict experienced in performing informal care in retrospect. Another focus group participant similarly perceived the course as providing necessary preparatory work to avoid feelings of guilt or failure around caregiving, and for that reason should be taken earlier in life:

If you can already earlier begin talking about these things [end-of-life], even younger, not when the situation is almost already too late – you could feel that you had touched upon these topics already. I am here now and want to know ‘maybe I didn’t do wrong after all’ and so on. But if you educate younger people about all of this, and make them position themselves differently, we can maybe change how we act towards each other in the end-of-life. (Female, age 71)

As this participant articulates, the end-of-life is a period textured by experiences of turbulence and uncertainty in planning for both sick individuals and significant others. As Broom et al. (2016) note, “informal care often involves on-going self-assessments of moral virtue” engendering social pressures upon carers to perform care as a means to validate themselves as “moral beings” (p. 990). This can produce an ambivalence arising from a tension between actual experiences of caregiving contrasted with social expectations about planning and performing a “good death” (Broom et al., 2016). Part of this planning can include specifying what kind of treatments are or are not desired, fulfilling social obligations, or other end-of-life wishes. One recent study evidenced how caregivers of significant others in nursing homes experience this decision making process as burdensome because of a general dearth of early planning for, and discussion around, death (also called advance care planning) (Bollig et al., 2016). While men also bear the psychological, physical and economic challenges of informal caregiving, especially for women, who disproportionately bear the burden of dependency work, finding avenues to claim greater agency in the family could be an important component of being able to emotionally reconcile the ambivalence of challenging domestic situations (Connidis & McMullin, 2002).

Another focus group participant clarified that she didn’t sign up for the course for herself, but for her partner, so he could become better prepared for her illness and eventual departure:

I thought that [my husband] should take the course to prepare and know what forms of support exist, because I worked as a nurse with cancer related pain, and already know about most of what was talked about. But I thought it was important for him, to know what’s out there. (female, did not specify age)

The actions of this participant represent an inverse of this dynamic, where she, as the ill person, acted to improve their lives by enrolling her partner in a course—attempting to secure his well-being after she lost the ability to care for him. Death may be the most intransigent force shaping social relations. Given this eventuality, Last Aid was a source of empowerment which gave sick persons and their significant others the possibility to consider a plan of action regarding practicalities and emotions:

It gave me power in a new way … It’s so wonderful to be able to tick the boxes off a list: ‘we did this, and this and this’. It gives you more inner peace. (female, age 71)

It gives you tools to handle your situation. (male, age 74)

It is maybe important to write things down early, when one is healthy, before you are sick or demented. (female, age48)

And before things become too emotional. (female, age 75)

By provoking early action, or helping one to reconcile feelings during or after the fact, Last Aid was conceived as a welcome tool to reclaim agency in the ambivalent space of informal caregiving, in terms of emotional work as well as in practical day-to-day acts of caring.

At the same time, it is clear that gendered understandings of family and care delimit and shape the agency of course participants (Connidis & McMullin, 2002; Connidis, 2015; Husso & Hirvonen, 2012). This in turn shapes the construction of gender as a category around caring, where women interpret and perform their work in gendered ways, and are inversely expected to take on greater responsibility for social reproductive tasks requiring a kind of practical and emotional competence which is therein naturally attributed to the female sex (Chodorow, 2000; Husso & Hirvonen, 2012; Nadasen, 2021). One course practitioner, in reflecting upon the gender proportionality of the courses mused:

It is not surprising in the least for us who work in healthcare. It’s the women who take on these conversations. No, it’s not surprising. (course practitioner, female)

The banality of the gender-question in the performance of informal care reaffirms how cultural expectations of care are still centred in normative understandings of gender performance. These norms, in turn, mould the agency of female carers, who can feel greater pressure to fulfil expectations of themselves as caring subjects. In sum, the over-representation of women in the courses, and the predominance of intra-familial care illustrates the enduring gendered division of labour in dependency work at home, and the marginality of extra-familial caring in day-to-day life (Tronto & Fisher, 1990; Kittay, 1999). Therein, women are more likely to be exposed to the personal strain of ambivalence in caring, and the negative psychological consequences thereof (Connidis & McMullin, 2002; Finch & Groves, 1983; Kittay, 1999) – and for this reason, are perhaps more likely to seek tools to carve out agency in their domestic situations, such as Last Aid.

Agency in healthcare

A discourse of “demanding” good palliative care was pervasive during the course, in evaluations, and during focus groups. Last Aid was often described as a tool which augmented one’s ability to demand good care via healthcare services:

There is so much one can learn, on pain management, that I had no idea about before. Just like the teacher said, ‘these things I will demand’. Well if she can, then we can also demand such care … Knowing about the possibilities, this I think is important. (Female, age 75)

Acquiring knowledge about what formal care was available was felt to be especially important in a healthcare landscape which many described as requiring one to put up a “fight” and where their agency to procure services was perceived as limited:

As a relative one needs to fight quite a lot to get help. And to get the right help … There is so much that the healthcare doesn’t think about, which they really should … One can’t give up and you need to be quite demanding as a relative, and stand up for yourself. (Female, age 71)

This is what I mean, that if one doesn’t have knowledge about what to do, then it really depends on the first general practitioner you meet, whether or not you get where you need to go in healthcare. (Female, age 74)

In other words, attaining good formal care was just as much an obstacle as attaining good informal care. One of the course practitioners also emphasized that to create a more “compassionate community”, Last Aid needs to function as a tool which augments agency not only by preparing people to talk about death and dying, but to also “demand the right healthcare” and even a “good death”:

Because I don’t think a lot of people do that, older people, I mean. They don’t know what they can expect or what they can demand of healthcare or their neighbours [or society]. (course practitioner, female)

The study respondents’ positionality towards healthcare as being characterized by a relationship of demands reflects upon Hansen & Jansson’s (2022) discussion of women’s agency in the context of Nordic welfare state care services, which is described as increasingly “atomized” (p. 1). They argue that caring services are perceived more as a means of individual self-preservation than as an arena for collective struggle, wherein one must abandon the idea that “the state will come to one’s rescue” (Hansson & Jansson, 2022, p. 10). This was the case for many female course participants, who conveyed a lack of trust in the ability of institutions to provide them with the right care. Berggren and Trägårdh (2015) have similarly described citizens’ positionality towards welfare institutions in Sweden as being characterized by a kind of “statist individualism” – wherein the state exists as means to maintain and realize individual needs.

The case of Last Aid illustrates that welfare state individualism can have a neutralizing effect on collective discourses around healthcare and along the axis of gender. That is to say, while Last Aid did provoke a collective discourse of everyone’s universal right to good palliative care, the unequal division of informal caregiving at home was not framed as a gender issue. The female caregivers did not see their issues in accessing formal care as a collective one which impacted them as women more negatively. In other words, when “individuals are tied together through their access to the welfare state’s services to solve their individual problems” a collective discourse of gender inequality becomes invisiblised (Hansen & Jansson, 2022, p. 11). As Lotherington et al. (2018) describe, the perception of oneself as a “free and equal woman” has a penalizing effect in encounters with the Nordic welfare state, when women more frequently use that freedom to perform the work that is less available via formal channels (p. 139). This happens in a medical context where women also generally feel less trust in healthcare (Baroudi et al., 2022) and access to palliative care is variable due to a lack of routines for conversation about death and grief (Swedish National Board of Health and Welfare, 2016). A significant lack knowledge about what palliative care is amongst the generally public additionally points towards a broad disempowerment surrounding end-of-life issues (Westerlund et al., 2018), which further compounds the disempowerment experienced by women generally in healthcare settings.

Altogether, Last Aid provided a knowledge base for navigating ambivalent interactions with healthcare and helped participants reclaim agency in securing services by clarifying formal care possibilities. In this way, the course strengthened peoples’ ability to meet their individual needs via the public sphere of care services. At the same time, the ambivalent tensions between informal caregiving, and the increased pressure on female relatives to take up its mantle, was not problematized.

Agency in society

While there was a presiding discourse of “demanding good palliative care” of healthcare institutions, there was simultaneously a discourse of desiring greater openness on the part of communities to talk about end-of-life and help out in times of need:

You can go to IKEA and there will be people grieving … or maybe you have a colleague that’s going through a tough situation. But we don’t dare to talk about it, to go and ask, ‘hey, how are you feeling? … That’s what I mean, we need this knowledge in the general public. (Female, age 54)

Participants perceived Last Aid as a way to lessen the “taboo” around dying and augment the public’s agency in such situations by increasing their awareness of such struggles. With greater awareness, people could become agents of care and more prepared to engage with end-of-life questions (Westerlund et al., 2018). Such acts of support could take different forms. One woman described how she “sent her friends to bed” with a phone call every night asking how they were doing. Others described how they had made a homemade meal for a neighbour who had lost his wife. Such voluntary acts of caregiving were also framed by focus group participants in conversation as particularly important to lessening the loneliness of older people living in institutional settings:

Yes, just to go and read the paper to them [people in senior homes] for an hour, that would be fantastic. (Female, age 75)

Even if one doesn’t live longer because of it, you can have better quality of life. For that day you feel better if you have meaningful contact with someone or some kind of social stimulation. (Female, age 71)

The practitioners also considered voluntary care work as important to the project of HPPC generally. One practitioner stated that “compassionate communities” needed to be developed in “the private arena of life” by inciting a change in behaviour where people felt rewarded for caring in and of itself:

The basic idea with this course is to use these person-to-person relationships to create an effect in care in the end of life – and one should help others because of a feeling of wanting to help and make a difference for another fellow human being. (course practitioner, female)

Another practitioner described this as developing “civil courage”. The practitioners’ moral invocation for self-motivated informal care on the grounds of a common vulnerability and humanity was contextualized by a larger critique they and participants lodged against Swedish society, where loneliness was framed as a uniquely “Swedish problem”, and used as a rationale for why Last Aid was particularly important in the Nordic context. It was also framed as a “modern” problem of “individualism” by one practitioner. The typification of loneliness as a “modern” ailment led some to romanticize a past where they saw society was inherently more supportive and tight-knit:

All of society is built upon us as individuals, everyone has their individual integrity and so on. But two or three generations ago, what was life like then? It was a fight for survival. And then it was about the family. Then we were a unity. And we could handle these problems and we handled things at home – we died at home. (Male, age 74)

In previous generations we all lived together, and when someone died it was more natural. That’s not the way it is today. (Female, age 75)

This overly idealized past characterized by strong filial ties is typified by Hochschild (1995) as a “traditional” cultural archetype of care; a heteronormative paradigm which feminists have rejected out of fear that traditionalists “will exploit people’s distress in order to return women to the home” (p. 338). Hochschild argues that a “postmodern ideal type of care” has supplanted this archetype, where romanticized notions of care are discarded but not meaningfully replaced. In other words, the present is caught in a state of ambivalence between a traditional past and uncertain future of care. Wherein, the idealized images of women’s caregiving are eschewed but at the same time there are no new cultural ideations of care to fill the vacuum—making the process of transition often painful and ambivalent (Hochschild, 1995, pp. 338–339). The end-of-life was articulated by focus group participants as a time where one either “has family or is alone” (Female, age 70). And one “one can’t necessarily rely on friends” (Female, age 75).

While there was a clear political desire for more accessible healthcare services, there was also a counter-reaction where participants expressed that voluntary caring activities, and social openness to talk about dying, are necessary antidotes to the impersonal, or “cold-modern” (Hochschild, 1995), architecture of care services. This is representative of Merton’s (1976) discussion of sociological ambivalence being realized through the interplay of “counter-norms” reacting against “major norms” – in this case, voluntary kindness against institutional coldness (p. 25).

Discussion and conclusion

In the Swedish case, the implementation of Last Aid reflects an ambivalence in informal caregiving on a personal and political level—instigated by a changing social contract of care in the welfare state. This changing social contract of care interlocks with a shift from a de-familialised to re-familialised policy paradigm in long-term care for older adults and care of sick relatives. Therein, the agency of informal caregivers has become all the more important as formalized services have retreated. Moreover, this retrenchment can exacerbate existing gender inequalities in informal caregiving at home. Altogether, Last Aid was perceived as a tool which buttressed participants’ agency in caregiving amidst the practical, social and emotional uncertainties in the end-of-life. The findings of this action research study suggest that future public health strategies, including the planning of Last Aid courses, should therefore take gender into account when conducting public outreach and consider a targeted approach to invite more men into participation. Intentional strategies to increase agency in caregiving situations between both men and women could empower a more gender-equal division of labour in the longue durée.

Within the present state of transition in the Nordic welfare model, an ambivalent confrontation between “norms and counter-norms” alternately comes into play in different social relations of care (Merton, 1976, p. 25). Namely, historical norms of autonomy and institutional care, versus community care and informal support. The growing focus placed on the latter in policy documents, in the form of “ageing-in-place” policies, “self-care” programmes for older persons (Dahl, 2022, p. 20), or subsidized informal caregiving (Ulmanen, 2013), reflects a trend towards welfare retrenchment, wherein individuals and communities rather than state institutions are held responsible for health and wellbeing (Ayo, 2012). HPPC models can function similarly by galvanizing caring capacity in communities, potentially “toeing the line” of welfare retrenchment. Indeed, some feminist scholars have argued that such discourses of community care represent an attempt to “engineer voluntariness” and conscript a new social contract of care more compatible with the privatization and re-familialisation of once public care services (Hansen et al., 2022, p. 7). Increasing “voluntariness” also has specific consequences for women, who are overrepresented in the volunteer sector around care.

The retrenchment of state services, and parallel promotion of community care, poses specific risks for women. HPPC projects which seek to buttress more informal caregiving, for example, could transversally reinforce gendered notions of caring such as women’s “natural” predilection to care (Chodorow, 2000), and/or traditional sites of care, such as the heteronormative family unit (Hochschild, 1995). Altogether, even though Last Aid was perceived by participants and practitioners as a tool for reclaiming agency amidst ambivalence, it is within the context of a diminishing welfare state which conscripts greater individual responsibility. That is to say, greater individual agency in caregiving is necessitated by the diminishing public sector, and Last Aid was used as a tool to build that agency. Therein, women who perform the majority of dependency work today may more fastidiously pursue means to increase their agency in domestic and institutional caring situations. Importantly, while this study focused on the experiences of predominantly white, middle class individuals, future research should build on this case study by bringing to light the agency of women and men in diverse communities that have even less access to, and trust in, welfare services.

At the same time, the potential of HPPC initiatives, like Last Aid, to activate community networks is worth further investigation, especially in consideration of the current demographic challenges facing Western healthcare systems (Lutz et al., 2008). There is growing recognition that the labour of maintaining community ties (called as social capital, mutual aid, or social reproductive capacity) is essential to maintaining functioning societies (Fraser, 2017), especially in times of crises like COVID-19, climate change and war (Spade, 2020). Thus, the relevance of research on HPPC strategies, and building greater understanding of the complexity of familial and extra-familial ties and how they are sustainably maintained, is writ large.

Limitations

This is a limited case study which only encompasses three courses. However, it still sheds light on the dynamics of informal caregiving and social relations of care in the Nordic context, in a time when formalized caregiving is undergoing significant change. Further study of health promoting strategies around sick and dying patients and their communities is merited. Furthermore, while gender is a fluid category and issues surrounding non-cis, non-binary and queer ageing, disability, loss and grief are pertinent to further research on this topic, this paper focuses on cis, heterosexual men and women.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Kamprad Family Foundation under Grant #2019 0264.

Notes on contributors

Jamie Woodworth

Jamie Woodworth is a doctoral student in Gender Studies at Lund University, based at The Institute for Palliative Care. Her thesis explores the construction and maintenance of caring relationships in and around the end-of-life.

Notes

1. ”Significant others” is used in this case to represent not only biological relatives but persons who are personally important to the patient.