Possibilities and Limits of Family Informal Care for a Terminally Ill Person in the Czech Republic The demand for informal care rises in direct proportion to population aging. In the Czech Republic, the share of informal care ranks among the highest in Europe (MPSV press release, 12/2015), although the system of support and continuity of health and social services is rather less developed, similarly to other Central and Eastern European countries. In contrast to Southern European countries, there is no widely available offer of privately provided services here. (Klímová Chaloupková 2013, p. 113). The provision of informal care for a close person in a home environment, whether by family, acquaintances, neighborly help, or by another person in the form of a private caregiver or professional health/social services, is a sign of a developed society, reinforced by intergenerational relations, family cohesion, and social responsibility.
The possibilities and the “will” to provide informal nursing care in the family evolve over time and change as society gradually changes, as historically specific events of the period enter the timeline vertically and trigger transformation of the entire society through reactions and mutations in all its sectors. The position and function of the family therefore must also be influenced by social development. Seen in very broad terms, global social development can be divided into at least two stages: traditional society (also called archaic, primitive, or agricultural society) and modern (industrial) society, lasting from the period of the so-called Industrial Revolution to the present and moving from the 1960s into a post-industrial phase (Urban 2011, p. 94). For traditional society, a large intergenerational family living together was characteristic, where deference to traditional values and authorities prevailed. In industrial society, with the glorification of scientism and the ideal of progress, development shifted toward the nuclear married family. At the same time, new collective identities (social class, nationality, ideological orientation, etc.) were formed and society became increasingly oriented toward labor performance and professionalization of professional roles. The declining macroeconomic importance of the countryside supported social mobility to industrial centers and large cities. Modernization and industrialization then led to a gradual process of family atomization, and in recent decades, in the emerging post-industrial phase, also to new (alternative) forms of cohabitation, such as non-marital partnerships, singles, and registered partnerships, among others. (Urban 2011, p. 94–97). It can be observed that one consequence of the current state in which our society currently exists, characterized by a good standard of living, many life opportunities, and an abundance of contacts and information, is a further increase in “anti-family” influences (Vavroň 2013).
The intergenerational family was still typical for (then) Czechoslovakia in the interwar period, when among the privileges and functions of the family was also securing old-age support (Mlčoch 2014, p. 37). The family was then represented by co-residence of three generations: children and their economically active parents, and a grandparent generation “at rest.” This was a traditional patriarchal family, where in the middle generation the father primarily ensured livelihoods and the mother cared for children and grandparents, for whom it was taken for granted to participate in the family’s economic life according to their abilities (Sak et al. 2012, p. 106). The postwar transformation of social and economic life, which among other things enabled women to enter paid work, led to intergenerational disintegration of the family. The middle active generation, including not only fathers but also mothers who could now go to work and be economically active, is becoming independent. Childcare was taken over by the state in institutional forms such as nurseries and other preschool institutions. Care for the non-active generation was taken over by less personal, state-run retirement homes and long-term care wards (Mlčoch 2014, p. 37).
The move away from intergenerational solidarity resulted in further changes in social behavior, whose consequence was and remains demographic implosion and declining birth rates that do not even suffice for simple reproduction (Mlčoch 2014, p. 38). The influence of social change on family works across several generations, but only now has it forced a change in family type. The large multigenerational family ceased to be functional and split through so-called atomization, not only intergenerationally and functionally, but often also through migration (Sak et al. 2012, p. 111). The shape of the contemporary family was reinforced by industrialization, secularization, modernization, and associated urbanization, during which small apartments and one-generation households were formed, in which a multigenerational household is not anticipated, let alone intergenerational cohabitation (Sak et al. 2012, p. 111).
Ongoing shifts in pension age, the gradual change in women’s position in society, and economic changes in society have led to the formation of the social group called the “sandwich generation.” These are people burdened with family obligations. They go to work, care for children, and additionally care for older parents or grandparents. The age range of the sandwich generation is very diverse; in reality this can involve people aged 30–60 (Kolářová, undated). The sandwich generation is usually represented by women in roles such as daughters, daughters-in-law, wives, who on average spend 30 hours per week caring for a sick person and also go to work. (Stajduhar 2013, p. 122) The National Report on Health and Long-term Care in the Czech Republic states that almost 80% of care for older adults is provided by family, for an average of 4 to 5 years. Informal caregivers are 64% women and 36% men, of whom 80% are employed full-time. Dependent persons are cared for by their adult children in 53%, wives in 21%, relatives in 10%, and family acquaintances in 16%. The report also notes that ongoing social transformation influenced by changing socioeconomic conditions of families due to high unemployment, commuting for work combined with insufficient and expensive housing has also resulted in a growing number of family members who are willing and able to care for a dependent family member (Preliminary National Report on Health Care and Long-term Care in the Czech republic, s. 3–4). These caring persons have many roles: they maintain household functioning and related obligations. They provide personal care and assistance to the dying person in activities of daily living, monitor and manage accompanying symptoms during dying, such as pain, breathing disorders, vomiting, constipation, feeding problems, and many other disease- and situation-specific symptoms. They provide emotional and social support to the dying person, act as advocate and spokesperson in important decisions. They are also the main coordinator of care for the dying person. Beyond this, they have many additional obligations arising from their role in the family and at work. It is very difficult to balance all these obligations with working life, personal life, and self-fulfillment, since they are in practice working every day of the week, usually in two shifts. As a consequence of this high level of workload, with unclear duration and without the possibility of proper rest, health, psychological, and social problems develop (Stajduhar 2013, p. 122).
Analysis of the Topic of this Work in the Czech Republic
Under these circumstances, family caregivers can no longer be taken for granted as a self-evident source of care as was the case in the traditional family, especially where support is not secured. This is also confirmed by the OECD report on long-term care for older people from 2005 (hereinafter “OECD 2005”), which focuses on aging populations and also identifies some possible forms of support, specifically:
- national strategy, defining caregivers’ needs and support services for them (Australia, the UK, the USA)
- the right to an assessment of caregivers’ needs (in addition to assessment of care recipients’ needs), for example in the UK
- respite care and services, entitlement to care-related leave
- services aimed at family caregivers (consultations, education, psychological support, supervision, self-help groups…)
- recognition of care time in the pension system (Germany, UK)
- financial compensation for lost wages during periods of caregiving (Australia, Canada, Ireland, Sweden, UK…)
If we analyze the situation on the basis of the fields named in the OECD 2005 report, we must note that the Czech Republic currently has no unified national strategy for supporting home or family caregivers. Support for caregivers therefore consists of separate partial measures, promoted likely according to current need or political/professional assignment.
The presence of a person accepting the role of family caregiver is a key condition for that person to be taken into home care. This person assumes responsibility for continuous caregiving to the sick person and provides physical, social, psychological, and/or spiritual help. Family caregivers usually have no prior experience in caring for patients in the terminal stage of disease (effectively a dying patient). Healthcare professionals are expected, through their approach, to help not only the patient but also the family in managing home care as best as possible. Although family caregivers provide informal nursing care, they are an indispensable and, importantly, equal partner to healthcare professionals who actively participate in care for the sick person (Hudson et al., 2012, pp. 1, 5).
According to the author’s experience, there is no automatic and systematic assessment of caregivers’ needs beyond the provision of healthcare services under Act No. 372/2011 Coll. on Healthcare Services—the care provider is left entirely to the initiative of existing organizations or associations intervening in care. In terms of the Healthcare Services Act, three types of professional care services are in practice defined for caregiving in the homes of terminally ill patients:
- family doctor visit service
- home care agency services
- home hospice services
It is clear that a general practitioner, while delivering home visits, will not have sufficient time and likely not the professional competencies to provide this support. The remaining two services, mobile hospice and home care agencies, differ from each other in mission, staffing, funding mechanisms by insurers, the state, and self-payments, and ultimately in geographic coverage linked with the availability of this type of healthcare. Home care agencies provide professional nursing care in the home setting, and some of them in addition to regular clients provide care to patients in advanced and terminal stages of incurable diseases, including terminally ill patients, in cooperation with the registering general practitioner, outpatient specialists, and certain other professions such as social workers, pastoral care assistants, or clinical psychologists. A mobile hospice is an integrated unit that combines several healthcare and social services, and care is provided by a multiprofessional team consisting of a specialist physician in palliative medicine (hereinafter PM) or palliative medicine and pain treatment (hereinafter PM-LB), nurses, a social worker, a psychologist, and possibly a pastoral assistant and volunteers. At the admission of a patient to mobile hospice care, the patient’s condition is assessed by a PM or PM-LB specialist physician and a nurse, who set the treatment and nursing care plan. The nurse and physician’s visit frequency is indicated by the PM or PM-LB physician. A caregiver (medical specialist and nurse) is guaranteed continuous availability to the patient and their family seven days a week and 24 hours a day (also called “24/7”). The multiprofessional team meets regularly and evaluates overall care and the patient’s condition (ČSPM, 2012, p. 2). It is therefore clear that mobile hospices have greater space and expertise for providing and evaluating support, but these are fewer in number than home-care agencies due mainly to financing systems and are not represented in all regions (overall on this issue, see Foralová et al. 2015).
In the Czech Republic, under certain circumstances, respite services can be received under the form of so-called relief service under Act No. 108/2006 Coll., on Social Services, but this option is limited by several significant factors. First, their local availability is not guaranteed in any case. According to the register of social service providers, as of 31.12.2015 there were 293 relief services registered in the Czech Republic, of which 92 were in field-based form. Taking into account that one provider usually registers multiple forms of service, the actual number of providers is much lower than the total number of registered services. Another limiting factor besides local availability is the requirement that the cared-for person meets the target group criteria of this provider of a social, and not healthcare, service; that is, the service must be capable of delivering nursing care at all, and finally the financial aspect plays a major role because this is a paid service.
This situation can be partly addressed by the social benefit of care allowance under the regime of Act No. 108/2006 Coll., on Social Services. Its amount ranges from CZK 800 to CZK 12,000. However, to be granted, one must meet criteria set by implementing regulations to the Social Services Act, where the actual nursing component is only a secondary item.
Care allowance is granted on the basis of an application in administrative proceedings. A problem may also arise in the processing time, which can take several months, and assessment falls under the competence of social workers without appropriate education in healthcare. For terminally ill persons, it may and does happen that the allowance is not paid because the approval process is suspended due to death of the dependent person.
The only claimable “benefit” for caregivers is therefore “ošetřovné” and pension credit. Under Section 5(2)(f) of Act No. 155/1995 Coll., on Pension Insurance, in the version as amended, persons caring personally for a person younger than 10 years old who is dependent on help from another person at dependence level I (mild dependence), or for a person dependent on help from another person at dependence level II (moderate dependence), level III (severe dependence), or level IV (complete dependence), are insured in pension insurance if they meet the conditions set by the Act. This requires that they live in the same household; this household condition is not required when the cared-for person is a close person. The real benefit of pension-time credit, given the contribution base, is thus mainly for pre-retirement persons who are unemployed. Employed persons (or persons in service relationships) may benefit from “ošetřovné” only to a limited extent. A claim to ošetřovné under Act No. 187/2006 Coll., on Sickness Insurance, as amended (hereinafter the Sickness Insurance Act), exists for an employee when caring for a sick child up to 10 years of age, and when caring for a person older than 10 years whose health status requires necessary care by another person. Ošetřovné is granted for the first 9 calendar days of the need for care, and 16 calendar days for single employees. It is assumed that this period is sufficiently long for an employee to arrange caregiving for the subsequent period if care needs are longer than the entitlement period for ošetřovné. The purpose of ošetřovné is, at least partly, to compensate for loss of income until the employee is able to secure care in a longer-term context.
In December 2015, the Ministry of Labour and Social Affairs announced its intention to draft a legislative proposal to introduce caregiver leave and long-term sick-care allowance (MPSV press release 11.12.2015). Its purpose is to give employed persons the right to leave from work for a period of care and help and simultaneously receive appropriate compensation for income loss from gainful activity that had to be interrupted because of the need to care for a close person. The possibility to alternate caregiving with help for a transitional period followed by a return to economic activity is therefore crucial for maintaining caregivers’ standard of living, supporting their decision to care, and maintaining the level of employment in the context of population aging. This is currently a legislative intention in the phase of Regulatory Impact Assessment (RIA) evaluation, where the document has so far been circulated for comments from the professional public. From the regulation impact assessment it follows that two durations are currently being considered for caregiver leave and long-term care allowance: either 3 or 6 months. From the labor law perspective, the goal is to ensure that even longer absence from work due to caregiving leave must be tolerated by the employer, i.e., the employer must excuse such absence in the same way as in the case of current absences due to childcare or care of a sick household member. The amount of long-term nursing allowance is to be set in the same way as ošetřovné and will equal 60% of the reduced daily assessment base (RIA Impact Assessment…, 2015)
Conclusion
The author believes that although the Czech Republic is trying to create conditions for caregivers, due to missing conceptual documents and an undeveloped policy, this is happening unsystematically and only through partial traditional measures. The most recently effectively introduced change can be considered the introduction of care allowance (2007), which substantially and positively supported the economic situation of some caregivers. An economically active caregiver is practically, apart from ošetřovné, not in a position to claim any of the above-mentioned support measures, as their availability in time and place is a matter of chance (either they exist or they do not, and if they exist, further limits are set by target-group definition and economic accessibility). In this respect, the current state of home care provided by family caregivers, which now mainly affects formerly economically active women of the so-called sandwich generation, could be significantly improved by the proposed introduction of caregiver leave and long-term ošetřovné. Leaving the workplace due to caregiving and moving into economic inactivity, including so-called early retirement, has negative impacts on caregivers’ economic situation, leads to their social isolation and social exclusion, and can even result in poverty risk. These risks make it impossible or unacceptable for people of productive age to assume the commitment of caring for a relative or close person.
Authors: Mgr. Jana Foralová The author is an external doctoral student in Nursing, Faculty of Medicine, Ostrava University doc. PhDr. Darja Jarošová, Ph.D. The author is the head of the Institute of Nursing and Midwifery, Faculty of Medicine, Ostrava University List of Bibliographic Sources
Česká společnost paliativní medicíny ČSL JEP: Organizace paliativní a hospicové péče v přirozeném prostředí pacienta v ČR [online]. Rajhrad: ČSPM ČSL J.E.P. [accessed 2015-03-20]. Available online at: http://www.paliativnimedicina.cu/stanoviska-cspm/organizace-paliativni-hospicove-pece-v-prirozenem-prostredi-pacienta-v-cr
FORALOVÁ, Jana - JAROŠOVÁ Darja. 2015. Aktuální situace poskytování paliativní péče v domácím prostředí v České republice. In. KOŽUCHOVÁ, Mária. Teória a prax domácej ošetrovaťelskej starostlivosti, Martin: Asociácia Agentúr domácej ošetrovateľskej starostlivosti v Slovenskej republike, 2015. ISBN 978-80-971969-0-5, s. 20 -30.
HUDSON, P. et al. 2012. Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients. In Journal of Palliative Medicine [online]. 2012, vol. 15, issue 6, s. 696-702 [accessed 2015-02-16]. DOI: 10.1089/jpm.2011.0466.
CHALOUPKOVÁ KLÍMOVÁ Jana. 2013. Neformální péče v rodině: sociodemografické charakteristiky pečujících osob. In Data a výzkum – SDA Info 7 (2): 107-124, http://dx.doi.org/10.13060/23362391.2013.127.2.39
KOLÁŘOVÁ, Jitka: Genderstudies o.p.s.[online]. Genderstudies [accessed 2015-12-31]. Dostupné na internetu:: http://www.genderstudies.cz/download/Kolarova_Sendvicova_generace.pdf MLČOCH, Lubomír. 2014. Ekonomie rodiny v proměnách času, institucí a hodnot. Praha: Karolinum, 2014, 192 s. ISBN 978-80-246-2323-8.
Ministerstvo práce sociálních věcí: Hodnocení dopadů regulace (RIA) k zavedení pečovatelského volna a dlouhodobého ošetřovného [online]. Praha:MPSV [accessed 2015-12-20]. Available online at: http://www.kisinfo.cz/pdf/Pecovatelske_volno_RIA.pdf
ORGANISATION FOR ECONOMIC CO-OPERATION AND DEVELOPMENT a Patrick Hennessy (PREPARED BY MANFRED HUBER). The OECD Health Project Long-term Care for Older People. Paris: OECD, 2005. ISBN 9264008489.
Preliminary National Report on Health Care and Long-term Care in the Czech republic [online]. Praha: MPSV [accessed 2016-4-30]. Dostupné na internetu: http://www.mpsv.cz/files/59ae5569cf2834a36943a9baa7290e24
Tisková zpráva Ministerstva práce a sociálních věcí: MPSV přichází s návrhem řešící neformální péči v ČR [online]. Praha: MPSV [accessed 2015-12-31]. Available online at: http://www.mpsv.cz/files/17a1e657df74c568b191a81109f627be
SAK, Petr a KOLESÁROVÁ Karolína. 2012. Sociologie stáří a seniorů. Vyd. 1. Praha: Grada, 2012, 225 s. Sociologie (Grada). ISBN 978-80-247-3850-5.
STAJDUHAR, K. I. 2013. Burdens of family caregiving at the end of life. In Clinical And Investigative Medicine. Médecine Clinique Et Experimentale, 36(3), E121-E126.
URBAN, Lukáš. 2011. Sociologie trochu jinak. Praha: Grada, 2011, 271 s. ISBN 978-80-247-3562-7.
VÁLKOVÁ, Monika, KOJESOVÁ Marie a HOLMEROVÁ Iva. 2010. Diskusní materiál k východiskům dlouhodobé péče v České republice. Vyd. 1. Praha: MPSV, 2010, 77 s. ISBN 978-807-4210-211.
VAVROŇ, Jiří. 2013. Rodina a děti jsou pro Čechy důležitější než vysoké příjmy [online]. Právo 2013 [accessed 2015-12-31]. Available online at: http://www.novinky.cz/finance/322759-rodina-a-deti-jsou-pro-cechy-dulezitejsi-nez-vysoke-prijmy.html
Zákon č. 155/1995 Sb., o důchodovém pojištění, ve znění pozdějších změn a doplňků (účinném k datu 31.12.2015).
Zákon č. 187/2006 Sb., o nemocenském pojištění, ve znění pozdějších změn a doplňků (účinném k datu 31.12.2015).
Zákon č. 108/2006 Sb., o sociálních službách, ve znění pozdějších změn a doplňků (účinném k datu 31.12.2015).
Zákon č. 372/2011 Sb., o zdravotních službách a podmínkách jejich poskytování, ve znění pozdějších změn a doplňků (účinném k datu 31.12.2015).