Family vulnerability for sick older adults: An empirical ethics study

Abstract

Background:

In China, the conventional family-based ageing care model is under pressure from social transitions, raising the question of whether and to what extent families are still capable of dealing with the care of the aged.

Objective:

This article examines the vulnerability and inadequacy of families to bear responsibility for the care of the aged against a backdrop of socioeconomic transformation and diminishing institutional support in rural China.

Research design:

This article adopts an empirical ethical approach that integrates empirical investigation with ethical inquiry.

Participants and research context:

The empirical component of this article focuses on the lived experiences of caring for a wife and mother with dementia in one rural Chinese family, collected from a 6-month fieldwork study conducted at one primary hospital.

Ethical considerations:

Approval was obtained from the university ethics committee.

Findings:

The empirical study highlights a conflicted family process of managing and negotiating care that indicates the inadequacies and limited ability of families to deal with aged care tasks. In addition, inadequate structures and institutional deficiencies exacerbate the vulnerability of rural families and their inability to offer adequate care.

Conclusion:

Acknowledging the vulnerability of families as ageing care providers, this article calls for a socially supported family care model for rural older people in China and also proposes policy recommendations.

Keywords

Elderly healthcare empirical ethics family care rural China vulnerability

Introduction

The unprecedented upward trend in global population ageing has raised serious concerns about how the delivery of elderly healthcare and other dependent needs should be addressed. At one end of the spectrum, in the United Kingdom and the Scandinavian countries, older people rely primarily on social institutions in securing later-age welfare services. At the other end are societies with weak public safety nets where the task of aged care is largely assigned to families.^1
–3 China has a long history of relying on families to carry out ageing care, a model deeply rooted in cultural traditions emphasising the norm of filial piety and intergenerational solidarity.^4,5 However, although having vigorous cultural and historical roots, the practice of family care is under pressure at a time when China is experiencing far-reaching socioeconomic transformations. Factors such as the massive outward migration of younger people, shrinking size of multi-generational households, and changing family values and ageing care norms have eroded the ability of families to facilitate the care of their elderly dependents.

Numerous empirical studies have underscored the crisis of family caregiving in China under various headings, including the provision of financial support and physical care for older people,^6,7 the health and psychological well-being of older people,^6,8 living arrangements,^9,10 intergenerational reciprocity and the sharing of elderly care,^9,11,12 gender-based caregiving arrangements^13,14 and the interconnections between these factors. Existing studies offer empirical insights that allow us to appreciate the current challenges of family care and its variations. However, an in-depth analysis of the dynamic process whereby family members manage and negotiate care of their older members, particularly the issue of family vulnerability, remains an under-explored topic, as a growing number of empirical studies of family-based care in contemporary China have identified.^10,15

–18

For example, Cook and Liu¹⁸ point to intergenerational care as a fluid process in which each generation ‘engages in adaptions that are shaped by both conflict and negotiations; albeit not always with amicable outcomes’. Similarly, Lora-Wainwright¹⁶ argues that caregiving-related decision-making occurs as much ‘by disagreement and conflict as by cooperation and attempts to build consensus’, meaning that family relations are ‘always in process, renewed or challenged’ (p. 199). At the same time, receiving care is no longer viewed as the gerontological mandate of older people, but more appropriately as an adaptation of a reinterpreted ‘intergenerational contract’⁴ and/or an exchange of resources among family members.¹¹ Chen et al.’s¹¹ study documents the ways in which grandparents in rural China proactively step in to look after their left-behind grandchildren as a bargaining strategy to ensure proper support during their own later lives.

Informed by these findings, this article incorporates perspectives relating to both conflict and solidarity to examine family care, combining empirical investigation with normative enquiry. After introducing the research setting and methods used in the empirical study, the authors present an in-depth case study with a view to revealing the dynamic family process involved in managing and negotiating care. Drawing on a conflictual view of family caregiving, we subject the instability and vulnerability of families – manifested in their limited ability to deal with ageing care issues independently – to normative analysis. In addition, this article identifies a set of inadequate social structures and institutions that exacerbate the vulnerability of families and their inability to offer adequate care. Measures aimed at developing a socially supported family care model are also proposed to improve healthcare for older rural people.

Research methods and setting

The empirical data presented in this article were collected during a 6-month ethnographical fieldwork stint conducted in 2016 in Qingcun Hospital, a rural primary hospital in Southern China. In the course of the fieldwork, 20 rural families and their inpatient older members were interviewed, along with other parties involved. Semi-structured interviews and participant observations were employed to document the lived experiences of caregiving by rural families.

In this study, we focused on hospitalised older people because of their need for intensive family care and support, in contrast to their peers who were still enjoying relatively good health. Because most older Chinese lack adequate financial resources to pay for hospital care services, families play a major role in assisting them to seek hospital care and treatment when they fall sick. This includes paying off most of their medical bills, accompanying them on hospital visits and, most importantly, assisting with inpatient bedside caregiving. This family involvement in elderly inpatient care can be attributed to the demands of the Chinese norm of filial piety which encourages younger adults to care for their sick parents. At the same time, family involvement is also prompted by the inadequate delivery of nursing care in the Chinese health system. In many countries, nursing systems involve a mix of registered nurses, enrolled nurses and healthcare assistants. This mix of professionals can cooperate to divide tasks and meet the care needs relating to both patients’ inpatient treatment and their daily activities. In contrast, the Chinese nursing education system only trains registered nurses, charging them with providing technique-oriented nursing services (such as implementing doctors’ prescriptions and specialised, high-tech nursing interventions). The daily care-oriented work of inpatient care, including feeding, regular hygiene tasks, toileting and changing bed position, is usually left to patients’ families.¹⁹ This very demanding family care and support regime has made elderly hospitalisation an ideal site to investigate how family care is organised for older people in China.

This article presents and analyses an in-depth case study to capture the complexity, dynamics and vulnerabilities of family caregiving in the context of elderly hospitalisation. One might question the reliability and validity of using a single case study to generalise about family care in Qingcun or other rural areas in China. Such concerns are valid because, as revealed during the course of our fieldwork, each family care case has its own unique characteristics, determined by the specific family situation and its internal dynamics, and its members’ particular history of shared family relations, even though all the families interviewed shared a similar socioeconomic background. However, the epistemological approach utilised in this article is highly interpretive, rather than seeking verifiable ‘scientific knowledge’ as the basis for generalisation.²⁰ An individualised, in-depth case study such as the one presented here offers a nuanced understanding of the real-life situations and voices of the many rural families who are marginalised in Chinese society today. Although in many ways unique, this case represents the problems and challenges associated with the care of the aged encountered by many rural families in China.

Ethical considerations

This research project has been approved by the Human Ethics Committee of the University of Otago, New Zealand (Reference No. 15/106). Oral informed consent was given by all the families interviewed during the study, including the family involved in the case study published below. To protect the confidentiality of interviewees, all identifying information in this article has been removed, with all names used being pseudonyms.

Case narrative

During the study period, Guan Wu, the second son in his family, was caring for his mother who had been hospitalised as a consequence of progressive dementia. Diagnosed with dementia 5 years earlier, she was now incontinent, unresponsive and unable to recognise her family. Guan Wu worked in a city around 4-h travel time from his parents’ home. His brother Guan Jun ran a medicinal herb store in Qingcun. Both brothers rarely came home for a visit. Their father, who was 63 years old, had taken primary responsibility for their mother’s care over the past few years. Guan Wu and Guan Jun saved 1000 yuan (around US$140) every month to support their parents and also bought medication for their mother.

Guan Wu failed to show much appreciation for his father despite his long stint of caregiving. He described his father as frequently locking his wife away at home while he went out to indulge in gambling and visiting sex workers. ‘Her illness is her xinbing [illness caused when people are heart-broken] because of the bad treatment she has endured from her husband!’ What made Guan Wu even angrier was their father demanding ‘too much’ from his sons: ‘He is just too greedy and asked 1,000 yuan from each of us every month…[This is very different from] some of my co-workers who are already in their 70s, but still make a living on their own’. Though upset, most of the time Guan Wu remained silent as his father was the only person whom their mother could rely on.

A few days earlier when Guan Wu returned home for a visit, he was deeply touched by his mother’s condition: ‘She was lying still on the bed and was all skin and bones, as if she was already dead…My heart sinks [xin liangle]. I am not in any mood to carry on making money away from home’. On the contrary, the whole family seemed to be preparing for the mother’s death. ‘My sister was preparing her shroud. Her husband was looking for a coffin…Nobody had ever thought of bringing her to hospital to save her life!’ Guan Wu decided to make some changes. Because most high-quality health services were unaffordable and primarily located in urban areas, he felt that the most practical solution was to arrange for his mother to be admitted to Qingcun Hospital.

To better assist in his mother’s inpatient care, Guan Wu gave up his job in the city and found causal work in Qingcun. Every day he arrived at the hospital before 6:30 a.m. and headed back to work after finishing his care before 8 a.m. He cared for his mother in a way that was full of love and dedication, as revealed in the following scenario recorded during our fieldwork.

One day Guan Wu was walking his mother in a wheelchair behind the hospital. There was a large bruise on her face, coated with gentian violet. ‘She fell down and hurt her face’, Guan Wu explained, poking the bruise. ‘Ouch!’, she exclaimed. ‘You awful, mean son [sirenzai]!’ Guan Wu was pleasantly surprised by her outburst: ‘See? She cursed me! She still recognises me!’ he laughed, as if his old, healthy mother was still there. The same day, Guan Wu brought her some wonton for breakfast, mashing them carefully before spooning them into her mouth. After feeding her, he touched her playfully on the belly, adding, ‘then you’ll know if she is full’. He wheeled her back to the inpatient ward to give her a shower. However, his loving care of his mother attracted criticism. ‘People around me are always saying that it’s not appropriate [bufangbian] for me to shower her. My wife is always blaming me for this. But if not me, who will take care of her?’

Guan Wu’s efforts succeeded in pulling his mother back from death’s door. Shortly after, the doctor recommended that she be discharged. But Guan Wu felt anxious about making new care arrangements, as he was not planning to leave his mother alone in his father’s care: ‘If I return my mother to him, he will continue treating her in the same way! All my efforts will be wasted!’ Guan Wu proposed placing her in an elderly care home in Qingcun so that he, his brother and their father could take turns looking after her, each for 10 days at a time.

However, his brother rejected Guan Wu’s proposal and suggested maintaining the previous arrangement, as to him her symptoms suggested that any additional effort would be a waste of time: ‘Her brain is already empty…There is no point in continuing care. It’s her fate. It has nothing to do with us’. He suggested that she live with Guan Wu, while he would visit regularly to help out. Guan Wu rejected both these options, being especially opposed to the second one:

If my mother was staying with my family, I couldn’t count on him for any help…Having my mother there would also interfere with my home environment. It wouldn’t be good for my daughters, who are studying at home.

When his father expressed his willingness to continue caring for his wife, Guan Wu suspected his motives. As he recalled, from the moment he took on his mother’s inpatient care and stopped the regular payments to his father, he had never once showed up at the hospital, until one morning when Guan Wu found him changing her diaper in the inpatient ward. Seeing the standard of his father’s caregiving, however, Guan Wu summarily kicked him out: ‘Every time his money was running out, he would put on his pitiful look, pretending to care and begging to have her back so that he could continue asking us for money’.

These disagreement between family members made Guan Wu frustrated and he made a harsh decision: ‘I just left her alone in the hospital, wanting to see if they were heartless enough to watch her lying there suffering…I would not come to care for her unless they agreed to take on their responsibilities’. Meanwhile, other family members were also seeking a family consensus. Guan Wu visited his grandmother, telling her, ‘You should discipline your son! It’s for his wife’s sake!’ Fortunately, no one was entirely heartless in this family. After Guan Wu’s retreat from caregiving, a new family care arrangement very soon took shape. His brother agreed to bring their mother three meals a day. The father, in a moral quandary, promised to deal with her diaper-changing and daily hygiene needs.

Other patients and their families in the hospital environment shared their own opinions on the case. One observer commented, ‘It is not right for him [the father] to dump the responsibility for caregiving onto his children. The young should be the pillars of the family and earn money outside the home, not staying at the bedside’. This comparison was one-sided, as no one took account of the hardship endured by the father over the years of caring for a wife with dementia. There was a moment when he expressed outrage at Guan Wu’s accusation:

It’s only two weeks and already he [Guan Wu] is bored? He never thought about how hard it has been for me for so many years. He did nothing but give me some money. If he really wants to show filial piety, he should wash all the pants she pooped in.

The mother received inpatient treatment only during the first 2 weeks of her admission. In the following 4 weeks before she was discharged, she was virtually neglected in the hospital, waiting for her family to band together and make a decision about her follow-up care. Six weeks later, the family finally decided in favour of Guan Wu’s proposal, and his mother was discharged.

The vulnerability of families as caregivers and its structural origins

The heart-rending story of Guan Wu’s family challenges the Confucian ideal and the duty it places on the younger generation to care for ageing family members.^21,22 But this is just one example of a common dilemma shared by many other Chinese families. The struggle and conflicts evident in Guan Wu’s case suggest that family care, by its nature, is not simply about the positive expression of love and intimacy. Rather, family care conceals a dark side, which has been described as ‘a bed of trouble, anxiety, suffering and pain’.²³ Guan Wu’s considered retreat from caregiving reflects this dark side – not because he no longer cared about his mother, but because of the huge burden of care required, which is almost impossible to sustain by relying on an individual’s sense of commitment alone. Neither was it easy for the father to continue his caregiving role indefinitely, despite Guan Wu’s criticism of his less-than-respectful manner. Unwillingness to care for vulnerable individuals is exacerbated by the difficulties involved in negotiating adequate family care solutions. Family members often find themselves in conflict over the process of managing and negotiating care.

Acknowledging both the dark side of family care and its conflicting facets, however, does not mean rejecting the notion that younger adults have a responsibility to care for their aged parents. This is especially true in Chinese society, which has been deeply influenced by notions of familism and the norm of filial piety. At the same time, the provision of filial care implies strong emotional ties and the recognition of the unique values and status associated with older adults. These values have traditionally distinguished family caregiving from its commercial equivalents. Taking into account both the dark side of family care and the necessity for maintaining it, how should family caregiving be properly evaluated?

The concept of vulnerability is especially pertinent to the dilemmas around care experienced in Guan Wu’s family. Ontologically, vulnerability refers to the innate biological status we have as human beings that may expose us to the possibility of harm and injury – in short, being unable to protect our interests.^24,25 Beyond this basic ontological meaning, vulnerability also carries political connotations that can serve as a theoretical lens through which to trace the specific social structures and institutional conditions that produce varying degrees of vulnerability among different populations.^26
–28 The concept has been invoked to explain why some individuals lack the capability for self-protection as a result of specific social circumstances that render them more prone to harm than others.^26
–28 Thus, vulnerability can also be treated as a theoretical basis for achieving social justice and motivating solidarity,^29
–31 as the source of our special moral responsibilities to certain persons³² and as a basic ethical principle ‘essential to policy-making in the modern welfare state’³³ (p. 237).

In her analysis of the socio-cultural determinants of women’s vulnerability, Ruth Macklin proposed a schema of vulnerability that combines four elements. First, any analysis should begin with the lack of ability for self-protection in the face of harms and uncertainties; the second step is to identify the specific characteristics or circumstances that render individuals vulnerable and to assess the severity of their vulnerability; as a third step, she posits what might be done to mitigate or prevent harms or wrongs done to vulnerable populations in these circumstances; and fourth, she proposes seeking remedies and an appropriate way of assigning responsibility for mitigating harms.³⁴ While the discussion of vulnerability has so far focused on specific individuals or populations, the following analysis illustrates how a theory of vulnerability is applicable to the socio-structural and economic conditions that impact private family care provision.

Vulnerability as constrained capacities

Starting with the lack of capacity for self-protection proposed in Macklin’s schema, the normative implication of vulnerability in this context is manifested as the limited ability of families to be independent actors in ageing healthcare settings when impacted by severe socioeconomic change. What renders rural families especially vulnerable are the disadvantaged social circumstances that erode the micro context in which family care provision is facilitated – the impact of socioeconomic transformation, state ageing care policy and structural inequalities. Living under social conditions that seriously discourage families from undertaking care provision, there is little that individual families can do on their own to proactively manage elder care, despite the fact that Chinese culture still holds a strong expectation that they will fulfil their obligation to care. While, like Guan Wu, many Chinese family members would willingly undertake care of their elders, motivated by love and altruism, their willingness alone will be insufficiently robust to meet the needs of older family members because adverse social circumstances discourage them from doing so. Thus, rather than blaming Guan Wu’s family for their own misfortunes and their inadequacies in dealing with ageing care issues, it is much more important to critically examine the impact of external social circumstances which determine the provision of care within individual families.

Structural causes of family vulnerability

Under the influence of the Confucian norms of filial piety, China has a long tradition of relying on individual families to deal with the demands of ageing care. Traditionally, older people would co-reside with younger adults in order to secure the care and support they needed. As Chinese society becomes increasingly modernised and urbanised, however, the shrinking size of the family and changes in family ethics have deeply challenged the material and ethical foundations that once sustained China’s family-based ageing care regime. As a result of the massive emigration of younger Chinese to urban areas in search of employment, rural families have been left with diminished human and financial resources to assist in the care of their ageing members.^9,13,35 In the absence of daily care from younger adults, the spouses of dependent older people have increasingly stepped to fill the gap, as we saw in the role assigned to Guan Wu’s father in caring for his wife. In addition to changes in the structure of the family in China, modernisation is also challenging the ethical foundation of family caregiving. So long as the older generation still expects their offspring to fulfil their obligation to care for their parents, the younger generation in contrast has increasingly come to perceive themselves as individuals detached from parental authority, attending to their personal interests.^4,36 While Guan Wu showed sufficient filial attachment to sacrifice his career in order to improve his mother’s inpatient care, the contemporary conflict between personal interests and collective responsibility means that many of his peers would be unwilling to follow his example.

In addition to the constraints posed by shrinking family size and changes in family ethics, increasing social discrimination against older people constitutes another threat to family caregiving. In traditional Chinese society, older people enjoyed high social status and were honoured for their wisdom and high moral standards. Respecting and caring for the aged was also viewed as a universal moral responsibility. However, modernisation has transformed the way that Chinese people perceive the meaning of ageing care. The stereotypical image of rural older people is that of a group that is sick, dependent and frail – a profile incompatible with the values of independence and competition endorsed under China’s liberal market economy. Older people’s healthcare needs are frequently dismissed as a ‘worthless’ socioeconomic burden.^37,38 Living in a cultural context where older people are increasingly devalued has vastly increased their chances of being abandoned and neglected, especially when they fall sick. A particularly prominent feature of contemporary China is ‘descending familism’³⁹ – the flow of family resources and attention from the older to the younger generation. In our case study, this trend is mirrored in Guan Wu’s concerns about the potential disruption to his daughters’ study were his mother to move in with the family.

Another impediment to Guan Wu’s mother receiving adequate healthcare stems from the unequal allocation of healthcare and social care resources between rural and urban areas. Under this regional divide, most healthcare resources are allocated to urban areas, despite the fact that over half of older Chinese live in the countryside.^40,41 These geographical barriers to care have been exacerbated by the increasing commodification of the Chinese healthcare industry since the 1980s. Since the state began rolling out market reform in the health sectors, most public hospitals have been under-funded and health providers are encouraged to be financially self-sufficient and generate revenue through over-prescribing and high-tech medical intervention.^42,43 The consequence has been a rapid increase in medical costs that particularly disadvantages rural residents, who are typically of lower socioeconomic status.^44,45 Despite the state’s efforts to reform the health system over the past decade, it is still unclear to what extent these efforts have alleviated the burden of medical expenditure shouldered by rural residents.^42,46

The final impediment to elder healthcare relates to the structural constraints imposed by the Chinese hukou system (household registration policy).⁴⁷ The hukou system assigns all Chinese residents to one of two household categories – rural or urban – based on their employment. As a consequence, rural residents enjoy inferior access to state-provided social welfare resources, including lower reimbursement rates for health insurance and social welfare benefits. For example, a 2010 study reported that over half of urban residents relied on state pensions for financial support when they reached retirement age, whereas this figure fell sharply to only 5% for rural residents.⁴⁸ Moreover, urban residents enjoy superior health insurance coverage when seeking medical services in large urban hospitals. By contrast, healthcare-seeking by rural residents is mainly restricted to the rural primary care level. They also receive lower rates of reimbursement when seeking medical care in larger hospitals.⁴⁹ With few financial resources to access medical and other gerontological care services, admission to Qingcun Hospital was the most practical solution in the case of Guan Wu’s mother, and there was no alternative to caring for her other than a cobbled-together arrangement based on dysfunctional family relationships.

Moving forward: developing socially supported family care

Looking through an ethical lens provided by the notion of vulnerability, our analysis has identified various socio-structural and institutional forces that limit the ability of individual families to manage later-age care (e.g. migration, economic deprivation, unfavourable social norms, structural constraints and diminished institutional support). Highlighting the impact of structural constraints, the theory of vulnerability demands that we identify possible remedies to mitigate these constraints and assign responsibility for preventing harm to the victims – in this case, rural families in China. While this study highlights the vulnerability and insufficiency of families as care providers, it also witnesses the resilience of families who are able to summon the resources to devise strategies (including abandonment as a last resort) to build consensus and enable care in the face of social transition and institutional barriers. Despite the vital role and resilience of family caregiving in supporting older adults, no family can do all the tasks required without any form of external support. When individuals are deprived of opportunities for decision-making, ‘this is when a person is most vulnerable as this is precisely when others may possess more power and capability to take action to avert harms to the vulnerable’³⁰ (p. 129). The state has a responsibility to legislate for improved health systems and to create supportive social institutions to relieve the vulnerability created by existing structures and empower rural families to better take care for older relatives.

Effective measures would include creating a comprehensive social welfare system with a targeted approach towards rural older populations. This is essential for securing adequate financial and physical resources to improve health and gerontological care services for older rural people. The inadequate nursing care delivery provisions in the Chinese healthcare system are also a major concern. Developing a robust nursing system focusing on meeting the care needs relating to both patients’ inpatient treatments and their daily activities will significantly relieve the burden of care borne by individual families. Also needed are safe and affordable institutional care options for rural families at the community level, especially in cases when families are unable to provide direct, hands-on care as a result of worker migration. There is also a great need for an adequate compensation mechanism to reduce the financial and physical burden on family members faced with caring for older relatives. Until this happens, a suitable supervision mechanism should be established to ensure that the quality of care provided for older people, either by families or by institutions, meets minimum standards and is delivered with respect and dignity. It is also important to find ways of supporting the independence of older people, helping them be active and encouraging them to acquire the information they need about healthcare, social support and legal options, and to actively utilise these services. However, the most fundamental need is to reverse the trend of cultural devaluation of the older people and raise awareness about the moral implications of ageing care. By creating a supportive social environment and providing rural populations with viable care services, the vulnerable condition of rural families will be reduced and the care of older rural populations enhanced.

Conclusion

Integrating empirical study and normative analysis, this article examines the ways in which families manage the care and support of older people against the backdrop of pervasive socioeconomic change in rural China. Based on a case study of family caregiving for a woman with dementia, undertaken during a 6-month fieldwork stint in a rural Chinese hospital, the authors highlight a process of managing and negotiating care beset by numerous elements of conflict. The conflicted family process evident in our study mirrors the vulnerability and instability of families as caregivers, manifested in the limited abilities and resources they enjoy to respond to the heavy demands of ageing care. The vulnerability of families has its structural origins. A range of social and institutional structures exacerbate the vulnerability of rural families and their constraints on providing care. Understanding family vulnerability as a structural issue further underlines the need for state interventions, with a focus on creating supportive institutions to mitigate constraints and advance the family care of older rural people in China.

This article has its own limitations. The empirical data presented here draw on the experience of ageing care of a single rural family, which may not be representative of Qingcun or other rural areas in China. Another limitation is that the case presented here focuses on conflicts and tensions, especially between Guan Wu and his father. Other parties’ voices are largely absent. Despite these shortcomings, the lived experiences of family care presented in this article mirror at least some of the challenges that rural families in other regions have also encountered. We hope our study will inform further investigations of ageing care in other underdeveloped settings from the combined standpoints of ethics and social sciences.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This study is a part of the PhD thesis of the first author and was supported by the University of Otago.

ORCID iDs

Xiang Zou

Jing-Bao Nie

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