Access to Care by Older Rural People in a Post-Reform Chinese Hospital: an Ethical Evaluation of Anthropological Findings

Abstract

This paper examines older people’s access to care experiences in rural China by integrating anthropological investigation with ethical inquiry. Six months of fieldwork in a post-reform primary hospital show how rural residents struggle to access gerontological and nursing care under socially disadvantageous conditions. This anthropological investigation highlights the unmet needs in medical and nursing care for older people, as well as some social, institutional and structural elements that impede access to care. Centring on protecting the vulnerable as informed by feminist ethics scholarship, this paper argues that the failure to meet older people’s dependency needs is unjust, on the premise that it suggests a denial of the inherent value, rights and dignity of older people. This paper appeals for the provision of greater care and support by the state through putting in place social arrangements that better advance older people’s access to care. Some policy recommendations concerning health and social care reform for older people in rural China are also proposed.

Introduction

Uncle Chen,1 who was 72 years old, had been residing in Qincun Hospital, a rural primary hospital,2 since he suffered from a severe stroke and had been hospitalised for 2 years. The stroke resulted in compromised mobility, and Uncle Chen needed assistance with his daily activities as he became paralysed. Additionally, while he was receiving inpatient treatment in Qincun Hospital, a summer flood ruined his house and he became homeless. Uncle Chen was single and lived by himself before he was admitted to hospital. Given his social situation, the responsibility for his long-term nursing care and post-stroke rehabilitation fell on his brother, the only sibling Uncle Chen had in Qincun. Like most rural residents over 60 year of age in China, Uncle Chen did not have any access to a pension or other financial resources to secure himself proper nursing care and follow-up rehabilitation, which were mostly only available in urban areas. As a Qincun local, however, Uncle Chen had access to medical insurance under the NRCMS (New Rural Cooperative Medical Scheme), which granted him a 90% reimbursement of inpatient treatment at Qincun Hospital, but not for outpatient care. Fearing the heavy financial burden of supporting Uncle Chen and taking into account the high reimbursement rate for inpatient care, his brother arranged for Uncle Chen to reside at Qincun Hospital. Since Uncle Chen did not require medical treatment, the hospital attempted to discharge him and requested his brother to take over his care. The brother rejected the hospital’s request, of course, and the ensuing process of negotiation resulted in severe tension and conflict between both parties. Because Qincun Hospital is not a nursing home and therefore does not provide sufficient nursing care, his brother’s family still needed to assist in bedside care, including feeding, daily hygiene and excrement management. Eventually, Uncle Chen’s sister-in-law became his primary caregiver. In order to avoid direct encounters with medical staff when providing day-to-day care to Uncle Chen, she would usually slip into the inpatient ward from the backdoor at midnight to feed him and change his diaper discreetly. The challenges that Uncle Chen faced in accessing care is poignant but not exceptional. It represents the very plight that many rural dwellers encounter as they struggle to accommodate older people’s healthcare needs in the face of social disadvantageous conditions and a dearth of gerontological and nursing care facilities in rural China. Under what kind of social, intuitional and structural circumstances do older people like Uncle Chen end up in medical care facilities in order to meet their needs, including gerontological nursing care and residential care? What kind of ethical issues do these challenges in accessing care raise and how should these issues be evaluated? This paper examines older people’s experiences of access to care in a rural primary hospital in Southern China, by applying ethical analysis to anthropological findings. Throughout 6 months of fieldwork in Qincun Hospital in Yangxi County, between January and June 2016, 20 older patients and their family members, and ten members of the medical staff, have been interviewed. Simultaneously, this paper traces the various social, structural and institutional factors that seem to have contributed to a pattern of older people seeking gerontological and nursing care in rural hospitals.

We begin with a brief general introduction to access to care for older rural residents at a national and institutional level. Following this, an empirical account of access to care by older patients at a rural hospital is presented to highlight the unmet gerontological and nursing care needs of these patients. This paper will then provide a normative evaluation, by focussing on human vulnerability and the role of the state in caring for vulnerable older rural residents, and adopting a feminist ethical framework that integrates care and justice. At the end of this paper, some policy recommendations concerning health and social care reform for older people in rural China are also proposed.

The National Context

China is currently undergoing a rapid growth of its ageing population; a demographic shift that is accompanied by the tremendous burden of aged care. As observed elsewhere, it is reported that over half of the ageing population in China is living with chronic diseases and other co-morbidities that require gerontological and long-term nursing care (Long and Li 2016). Access to appropriate care is particularly challenging in rural areas, where medical and nursing care capacity is often lacking, certainly in comparison with urban areas. (Chan and Zhang 1999). Additionally, long-term heavy physical labour in agriculture makes it more likely that rural residents may suffer from poor health at a later age and have a higher level of chronic and gerontological care needs. A persistently unequal distribution of resources between rural and urban settings has directly impeded older rural older residents from accessing care services. Data from two national surveys conducted in 2015 show that only 33% of China’s total medical care resources were allocated to rural areas, whereas rural dwellers constitute over half the country’s entire population (Chinese Ministry of Health and Family Planning 2015). In addition, the commodification of Chinese healthcare since the 1980s market economy reforms has further undermined the accessibility and affordability of medical care for rural dwellers. As the government embraced market reforms that reduced its funding of public hospitals, many hospitals were instead encouraged to be financially self-reliant, and healthcare providers became increasingly reliant on the revenues generated by fees for high-tech interventions and (often excessive) prescriptions (Yip et al. 2010), resulting in a tremendous financial burden imposed on individual patients. Also compromised was the insurance coverage for rural patients under the Cooperative Medical Scheme, with over 95% of the rural population being uninsured until the end of the 1990s (Barber and Yao 2010). Rural residents’ inadequate access to medical care was further intensified by the Chinese household registration policy, or hukou system. Based on a rural-urban divide, hukou grants rural residents inferior access to state-provided social welfare, such as health insurance reimbursement and social pension. This means that rural residents aged 60 years and older face unjust marginalisation in accessing medical and social care systems.

Taken together, these factors heightened the financial barrier for rural residents in accessing hospital care and further disadvantaged most of the rural ageing population who were typically of lower socio-economic status (Liu et al. 2003; Zimmer and Kwong 2004). Consequently, families become the primary institution on which older rural people rely to secure financial and social means to access care, whether in terms of paying off older patients’ medical care expenses, accompanying them on hospital visits or navigating hospital care services. This family-based support model, however, has come under pressure since China experienced market economy reform and socio-cultural transformations. As numerous young rural residents migrated away to urban areas to seek employment, rural families experienced limitations in resources and capabilities in supporting care provision for their ageing members. Meanwhile, modernisation also altered the way people perceived the significance of aged care. For instance, older people’s healthcare needs have been devalued as a form of socio-economic burden (Long and Li 2016). This perception of “burden” further exacerbates the obstacles to older rural residents’ access to care.

Having realised the threat that the rural-urban health disparities posed to the stability and sustainability of Chinese economic development, the state launched a series of healthcare system reforms to reverse the inequalities. In response to the need for affordable medical care, universal healthcare insurance coverage was gradually established from 2002 to 2009, with over 90% of the rural population insured under the New Rural Cooperative Medical Scheme (NRCMS) (Meng et al. 2012). The launch of the NRCMS was seen as a crucial step in reducing the rural-urban insurance gap and promoting access to healthcare for the rural population. The scheme was largely financed by both central and local governments, with a relatively low contribution from individuals. For example, by 2010, the government subsidised 200 yuan of each rural resident’s NRCMS enrolment fee; the individual only needed to contribute another 30 to 50 yuan (Yip et al. 2010). The scheme covered outpatient expenditures, with fees for the treatment of designated chronic diseases and inpatient care receiving higher levels of reimbursement than other treatments.

Along with the expansion of health insurance, the Essential Drugs List and a zero mark-up prescription drug policy were implemented at the primary care level. In practice, healthcare providers were only allowed to prescribe drugs from the National Essential Drugs List and could no longer profit from drug sales (Yip et al. 2010). This reform aimed to reduce the inappropriate incentives for health professionals to overprescribe by eliminating mark-ups on medications, thereby also inhibiting irrational drug use and promoting efficient and effective prescriptions. Local governments provided subsidies to compensate for the loss of revenue that rural hospitals faced from the resulting decrease in drug sales and covered the salaries of their healthcare providers.

But the extent to which these policies have alleviated rural residents’ burden of medical expenditure remains unclear. A national-level study has revealed that the NRCMS was not comprehensive enough to prevent an increase in catastrophic health expenditures and continuingly high levels of impoverishment of rural households, with a 54.7% rise of per capita average annual health expenditure of rural residents from 2004 to 2010 (Li et al. 2014). As the number and scale of drugs on the list were limited, the drug policy also restricted treatment options that were available to healthcare providers, including the provision of specialist services (Zhou et al. 2014). These findings indicate that the existing reforms do not adequately promote equitable access to, and utilisation of, quality medical care by rural residents. Some reports even suggest that, according to certain criteria, health disparities have even been enlarged since the introduction of the healthcare system reforms in 2002 (Bloom 2011; Yang 2013).

Access to Care in Post-Reform Qincun Hospital

An overview of China’s current national backdrop that relates to access to care for older rural residents reveals various structural barriers at the political, structural-institutional and societal levels. In Qincun Hospital, where this study was conducted, healthcare provisions and the establishment of the NRCMS after the national healthcare reform very much resembled the development of rural primary care at the national level.

In 2016, a report from an online forum in Yangjiang Municipality indicated that the overall participant rate for NRCMS in rural localities was nearly 100% (Yangjiang Municipal Human Resources and Social Security Bureau n.d.). According to the 2016 NRCMS regulation of Yangxi County, patients in Qincun who utilised outpatient services came close to 50% coverage from their local NRCMS. The coverage rate for utilising inpatient services was even higher, reaching up to as much as 90% (Yangjiang Municipal Human Resources and Social Security Bureau n.d.). Many local medical staff also confirmed that the high joining rate of NRCMS achieved through the national healthcare reform had raised the local villagers’ sense of entitlement to medical care, with increased utilisation of inpatient care services, particularly in Qincun Hospital.

The success of the NRCMS and its implementation in Qincun society have, however, been mixed. The high coverage rates alone do not prove that the NRCMS actually diminishes the cost of the treatment and local residents’ financial barriers to healthcare. Some local villagers expressed discontent towards the NRCMS as the past few years have seen a rapid increase in the amount of personal contributions required. According to the latest regulation released on its website, the personal contribution requirement for NRCMS was raised from 80 yuan per year per person in 2014 to 120 yuan in 2016, and was projected to reach 180 yuan in 2018 (Yangjiang Municipal Human Resources and Social Security Bureau n.d.). Meanwhile, the NRCMS covers costs for only certain conditions and reimbursements mechanisms are often complex, and only cover a proportion of patients’ costs. For example, when utilising inpatient services in Qincun Hospital, many services, such as fee for an inpatient bed and nursing services, were not covered by the NRCMS. Patients could receive the high reimbursement rate of 90% only under the condition of utilising inpatient care services in Qincun Hospital. But this rate may decrease to below 30% if local residents seek quality medical care in tertiary hospitals in Yangjiang City. As most older residents were deprived of access to formal social pension systems, the out-of-pocket costs remained unaffordable and older residents were faced with serious financial constraints in medical decision-making.

Along with the increased utilisation of hospital care and expanded coverage of NRCMS, however, was a perception of compromised quality of care and restricted functionality of Qincun Hospital after the rural primary care reform. Dr. Feng, who was the most experienced of the medical staff in Qincun Hospital, revealed his sense of depression with the compromised medical care service delivery in Qincun Hospital due to the restricted drug policy. He said:

Last time there was an old patient who had a heart attack and was sent over here. You know, after the drug policy reform, there are few effective drugs available in our hospital... Without drugs to do a rescue, we just left him over there, watching him suffering... He died quite soon. But before the drug policy [was implemented], when there were plenty of effective drugs; we rescued a lot of patients in similar situations before.

The restricted drug policy reform, on the other hand, also reduced the earnings of medical professional. The salaries of medical personnel were regulated at a generally fixed level and subsidised by local financial bureaus. Although reform policies also regulated some performance-based salaries to factor in the number of patients for whom doctors provided medical care services, such performance-based incentives were far from enough to compensate for medical professionals’ losses previously received from sale of drugs and the provision of high-tech medical services. To seek better earnings, some experienced doctors left Qincun Hospital to seek new positions in tertiary hospitals in Yangxi and other nearby counties.

Furthermore, the reform discouraged healthcare professionals from providing risky medical care, such as surgery and other invasive procedures, to rural residents. Instead, they typically referred these patients to private hospitals in Yangjiang and other nearby urban areas. By doing this, they were able to get kickback as middlemen and share in the revenues generated by their referrals to private hospitals, where charging mark-ups to patients was still permitted.

As most young people have migrated to urban areas in pursuit of better employment, older people have been left behind, and now constitute the majority of the Qincun population. The high healthcare demands of older people make them amongst the most likely to seek hospital care. Meanwhile, also because patients with complex medical care needs were frequently referred to tertiary medical institutions after the healthcare reform, older residents who needed chronic care and palliative care constituted the primary source of enrolled patients in Qincun Hospital.3 Official statistics on the age distribution of patients at the hospital were not available, but nearly 90% of patients encountered and/or interviewed were at least 65 years of age and almost all were from Qincun.

The trend of an ageing population for enrolled patients combined with their demanding chronic care needs has altered the primary function of Qincun Hospital. Coupled with the weakened medical care interventions after the implementation of new drug policies and related reforms, Qincun Hospital has been transformed from a medical institution to a gerontological facility mainly centred on addressing the gerontological care needs of older residents. Dr. Ye, a young doctor who has been working in Qincun Hospital for 6 years, offered his account that mirrored the functional transition of Qincun hospital:

There is no patient in our hospital. All you can see here now is just some older people. They are either incurable or waiting for death... We also don’t have drugs to cure them... Our hospital has now become a nursing home (yanglaoyuan)...

Similar to findings reported elsewhere (Long and Li 2016), when admitted to Qincun Hospital, most older patients preferred to postpone their treatment, relieve their chronic pains and minimise the financial burden on their families, rather than seeking quality care and effective treatments (as is done in higher-level hospitals). Compromised quality of care further undermined rural residents’ expectation and an already enfeebled trust in Qincun Hospital. As an older patient’s relative who was accompanying her mother-in-law for inpatient care in Qincun Hospital described:

Do you really expect to fix your problem in this hospital? These doctors have no idea how to treat patients, but only sell fake drugs to these poor old people... If we young people have problems, we will go outside to large hospitals to see a doctor... you know only these old people will visit here... my mother-in-law is 94 now, she is too old to be healed, what do you expect for her? These medications should be enough.

In addition to meeting older people’s chronic care needs, Qincun Hospital has become a solution to the residential care needs of older persons. The high reimbursement of 90% through utilising inpatient treatment under NRCMS, along with the shortage of long-term nursing care facilities in Qincun locality, encouraged some older people to reside in Qincun Hospital for nursing care, even though their medical conditions did not require inpatient care or treatment. This residential care solution was especially true for those older people who do not have families to care for them and who were unable to independently manage on their own due to severe disease and/or disability. The role of Qincun Hospital in meeting the long-term nursing care needs of older people is clearly illustrated in Uncle Chen’s case, which is depicted at the start of this paper.

The use of Qincun Hospital as a residential care facility is also revealed from the experiences of another patient, Uncle Zheng. Like most local residents, Uncle Zheng, who was 79 years of age, lived by himself since all of his children migrated away and worked in urban areas. Despite compromised mobility due to age, Uncle Zheng successfully managed living on his own most of the time. However, when it came to the rainy season when the damp floor in his house became a threat to his safety, Uncle Zheng would pack his belongings and come to Qincun Hospital for residential care. According to him:

I know my condition does not need this hospital treatment. But the floor in my house is too damp and slippery. It is dangerous for older people like me to stay inside... what if I fall down and die at home?... There was an old guy in my village falling down and fracturing his leg in his own house. He was not able to move and there was no family member around to help him... so he just lied down over there, until he got rotten did some people around find him dead...

The trend of patients getting themselves admitted into Qincun Hospital imposes a tremendous burden of nursing care on healthcare providers, particularly for those older inpatients who suffered from compromised mobility and had complex nursing care needs. In some countries, nursing care usually involves a mix of registered nurses, enrolled nurses and healthcare assistants. This mix of professionals can collectively meet the medical and basic care needs of patients (Hui et al. 2013). In Qincun Hospital, there was a lack of enrolled nurses and healthcare assistants. Most of its nursing staff focused primarily on skilled nursing interventions, such as carrying out doctors’ orders and completing tasks that required specialised nursing skills. In consequence, the day-to-day care needs of patients, including feeding, maintaining daily hygiene, changing positions and excrement management, ultimately fell on their family members. Yet, similar to the trend at the national level, the rural-to-urban migration of younger residents has undermined rural families’ resources to meet the needs of older people. This fieldwork identified severe family tensions, conflicts and disagreements that arose over the care and treatment of older people. Extreme cases involved abuse and ill-treatment of older people by relatives, but these accounts are beyond the scope of this paper to discuss.

Assigning Responsibility for the Care of Vulnerable Rural Older People

The accounts above have outlined a general scene of challenges in accessing medical and/or social care by older residents in Qincun Hospital, these being: the compromised quality of medical care; increased number of older patients admitted into inpatient care for medical and non-medical reasons; low expectation of patients about receiving curative treatment; and insufficient provision of nursing care. These accounts suggest that the forms of medical care provided in post-reform Qincun Hospital, though relatively accessible, are inadequate, and still more needs to be done to address the demanding health and nursing care needs of older people in rural areas.

The ethics of care endorsed by feminist ethicists is of relevance in thinking about older rural residents’ unmet healthcare needs, centring on the moral significance of care in responding to human vulnerability and dependency (Turner 2006; Fineman 2008). According to the feminist critique, the idealised image of individuals as independent and autonomous agents endorsed by liberalism fails to attend appropriately to human dependence and vulnerability (Baier 1994; Fineman 2004). All human beings are vulnerable and will inevitable fall into dependency at some point in their lives. Resulting from the irreversible condition of ageing, older people are much more vulnerable to disease, chronic pain and suffering. To become or remain independent, one must first rely on the care and support from others so as to develop or sustain autonomy and agency. The provision of care and support are thus highly essential for older people to regain their capacity to cope with everyday physical needs and maintain their independence and dignity.

In addition to the necessity of responding to human dependency and vulnerability, the provision of care also gives rise to an obligation of justice. Many scholars have argued for the need to treat caring for the dependencies and needs of people as a substantial ground of justice (Baker 1992, in Temkin 1992; Schmidtz 2006). According to feminist scholar Anders Schinkel (2013), care should begin with recognising the inherent value of older people who have an equal and legitimate claim to healthcare resources, and therefore, their needs ought to be taken seriously into account. Justice requires that proper care is provided in response to older people’s dependent needs, and falling short of acceptable standards of good care constitutes an injustice. For example, in the situation of Uncle Chen presented in this paper, many of his basic needs have not been met: the need for proper food, as well as his need for hygiene and cleanliness, proper excrement management, independence and autonomy, and the need to be able to retain his self-respect and dignity. The questionable standard of care and the failure in meeting Uncle Chen’s basic needs are ethically unacceptable. They suggest a denial of Uncle Chen’s right to health and social care, a violation of his dignity, as well as a failure in recognising him as a member who has equal and legitimate claim to proper care in our society.

Vulnerability is not only physically induced, but also situational and context specific. Unjust social institutions and morally flawed social policies create additional pathogenic causes of vulnerabilities (Dodds 2014). This paper identifies multi-level social, institutional and structural forces that disadvantage the health and nursing care needs of older rural residents, worsened by the rural-urban divide. These systemic forces and constraints exacerbate older rural dwellers’ vulnerability, shaping the predicament under which many older people felt no alternative but to seek inpatient care in Qincun Hospital in order to meet their medical and social care needs. In some sense, the problem underlying the increased utilisation of hospital care amongst rural residents is the dearth of gerontological care and nursing care resources in Qincun Hospital under the persistent rural-urban disparity. Social justice requires that these pathological causes be addressed, through reforming unjust social institutions and promoting social protections in response to older rural dwellers’ vulnerability and their dependent needs.

Realising the needs of care and protection in response to older people’s dependency and vulnerability, which are both physically inherited and structurally induced, further question arises concerning who bear the responsibility for providing such care and protection. According to feminist theorists, the answer lies with the efforts of both individual families and the state (Eichner 2010; Tong 2014; Kittay 2013). This is because, though families play an indispensable role in response to older people’s dependent needs, their actual caregiving, however, is largely constrained by external social conditions and resources available to them. The state, in comparison, has more power to influence social institutions and thus also the conditions in which individuals are able to access to care. As market forces gradually dominate Chinese society, a key set of social welfare projects (such as ageing support, healthcare and education) are largely treated as private responsibilities that ought to be managed by individual families (Croll 1999). However, a morally unsettling paradox is that, so long as the Chinese state expects families to care for the aged, the state does not create proper institutional environments and regulatory mechanisms to enable families to fulfil their caregiving role. It becomes necessary to ask whether it is just for the state to impose this heavy burden of care on individual rural families and at the same time also sets structural impediments that disempower them.

This limited role of the state, in terms of organising social institutions and empowering families, needs to be remedied. An ethics of care as a political concept (Tronto 1993; Kittay 2013; Sevenhuijsen 2003; Engster 2007) bears great significance to addressing the caring role of the state in informing institutional changes and advancing access to care for the older rural population. For instance, by placing care at the heart of justice, Daniel Engster (2007) argues that the function of society lies with providing for needs that can only be satisfied through public goods, and that a society that does not attend to matters of care will not be a just society. Eva Kittay (2013) also argues for the caring role of the state in allocating resources so as to promote the practices of care in families. Drawing on these arguments, this paper appeals for the supportive role of the state in organising social institutions and endorsing social policies on elderly care, in order to promote access to appropriate medical and social care in rural China. Three social policy recommendations may be considered.

Firstly, this study argues that developing a comprehensive state welfare system is fundamental to supporting healthcare for older rural residents. It strongly recommends that the Chinese state takes steady measures to promote, lead and manage the social pension system, targeting the needs of these residents. This social pension system also ought to be structured in a way that allows older rural residents who are at the bottom of the socio-economic ladder to receive sufficient financial assistance so as to meet their basic healthcare and nursing care needs, especially when they are deprived of appropriate family care and support.

Secondly, measures are needed to address social and geopolitical changes caused by rural-urban migration of younger rural residents and to encourage rural-to-urban family migration or family re-unification after younger rural residents have settled in urban locales. Some useful policy interventions could be, for instance, extending the coverage of urban social welfare and healthcare insurance by giving priority to the needs of rural migrants and their families (Guo and Gao 2008). This paper also highlights the tremendous burden that families encountered when supporting older people. Proper financial incentive and compensatory policies should be established to alleviate their burden and promote their capability to care.

Thirdly, this paper acknowledges that not all families are equipped with time and resources to assist in elderly care. Much more institutional care resources should be developed, such as skilled nursing homes and gerontological care facilities, targeted towards meeting the needs of older rural residents, and incorporated into the NRCMS. The state needs to establish proper supervisory and institutional regulations at the community level to make sure that care is of quality, respectful and dignified. At the same time, it is equally important to empower older rural residents to stay healthy and to utilise existing healthcare and supportive resources appropriately.

Conclusion

This paper examines older people’s experiences with access to care in a post-reform rural primary hospital in Southern China, by applying ethical analysis to anthropological findings. The care that is studied here is located at the intersection where care for older people transitioned from the family to an institutional environment; a transition that is also becoming common in many other countries that face a similar demographic challenge. It thus invites further empirical-ethical investigation of the subject of aged care and social care across different socio-cultural setting.

This study also has its limitations. The anthropological investigation of this study is restricted to only one hospital, which may not entirely reflect of the experiences of people in other rural areas in China. Despite this, the case of patients in Qincun Hospital represents some of the common experiences and true predicaments that many older rural patients and their families have encountered as they struggle to secure care and support when experiencing socio-economic transformations. Their predicaments and unfair treatment certainly need careful exploration from the perspectives of the social sciences as well as ethics.

Compliance with Ethical Standards

The Human Ethics Committee of the University of Otago in New Zealand approved the research (Reference No. 15/106).

Informed Consent

All participants involved in this study have given their informed consent in oral form, as participants might have been reluctant to express their experiences and perspectives if they would have been required to sign a written consent form, especially with the research involving personal information. On the one hand, signing a document is a quite serious undertaking in a Chinese cultural context, and on the other hand, oral consent is generally honoured and accepted in Chinese society. Therefore, taking consent orally was helpful in minimising the participants’ fear of identification and establishing their trust in the researcher. Additionally, written consent was impractical given that many of the participants were illiterate.

To protect the confidentiality and privacy of the research participants, all identifying information was removed. For example, the names used in this paper—including those of informants and locations—are pseudonyms.