Lessons that I have learned from collaborating on a research project
17 september 2020
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Abandoning or killing the ill loved one? Or assisted suicide or euthanasia? A cross-cultural reflection of informal care.


By Mikołaj Zarzycki Published 07.10.2020

In this short article I tackle the issue of gerontocide and abandonment of the aged and old in the context of informal caregiving in non-industrial societies and compare it with the issue of assisted suicide and euthanasia in developed countries



Non-industrial versus industrial societies

First, what do I mean by non-industrial (or pre-industrial) societies? In the contemporary world, most human societies are either industrial or involved in the process of industrialisation. Non-industrial societies still exist but they are considered ‘archaic pockets’ doomed to be erased if not placed under protection order. These are the societies in which the economy is based on hunting, gathering, herding or agriculture characterised by limited technology and low production of goods. Even though considered archaic nowadays, for most of human history people lived in such societies [1]. On the contrary, developed (or industrialised) countries have advanced technological infrastructure and have diverse industrial and service sectors [2].

Abandoning or killing your loved one

Let’s focus on the abandoning or killing of care recipients – people who receive informal care from their family or friends - in non-industrial societies. Such practices have been evidenced by Feinman [3] in 42 societies. Although this may seem a lot, the reality is the practices are very uncommon and far from universal (as in most societies it’s expected that people would look after their loved ones without abandoning or killing them). Gerontocide is basically killing of the frail and elderly or their abandonment to death. We might think that the care recipients, usually the elderly or severely handicapped, may fight against or bitterly resent such treatment, yet we can read of people accepting or not actively resisting their fate in many societies [3].

For example, among the Mardudjara hunters and gatherers of Australia, the old disabled were abandoned on their request – left to die when they could no longer travel with the rest [4]. In other societies being buried alive was an honourable way to pass away from this world – extremely frail elderly of the Yakut of Siberia would request their relatives to bury them. In the past, the elderly of the Eskimo of northern Canada also asked their loved ones to abandon them believing that death can only bring them new rebirth in the body of a new-born child. Beauvoir, however, indicates also stances of the old people being hostile towards their ‘executioners’. Among Hopi Indians the issue of direct reciprocity stands as a strong value – when people become dependent, they are often regarded as useless: ‘You are old, you can do nothing, you are not good for anything anymore’, Hopi women can tell their elderly mothers. Children can even publicly refuse to support their parents [5]. In some societies, the old who depend on distant kin or neighbours (for example, because they are childless or their children died) may end up as beggars or being accused of witchcraft. In the society of the !Kung of Botswana, gerontocide was reported very rarely – even if the old are, at times, abandoned or killed, they are usually looked after for a long period of time during their dependency.

It is seen that abandoning or killing of care recipients is strongly influenced by cultural values and the rites that arise from these. Gerontocide is, however, uncommon to most non-industrial societies where people are obliged to provide care either due to cultural values, religious beliefs or social sanctions and pressure [6]. For instance, among the Nigbo of Nigeria, a man can demand care as a publicly acknowledged right and the person who fails to provide care is a guilty party subject to social ostracism. Such right is also reflected in some developed countries with South Korea a good example. There is a lawful obligation and encouragement to provide care - a legal duty imposed on adult children to support their parents is seen in The Korean Civil Act enacted in 1958 [7]. Cultural and societal norms support the provision of informal care until the person dies.


Informal care challenges in the contemporary industrial world

What does informal care mean for an average man who was brought up in a developed country? Informal caregiving is a provision of care to a relative or friend with care needs, usually unpaid activity, unlimited by trade union agreements as to hours per day, holidays, rest periods after night shifts or other long-term mutual commitments we know from professional work – that’s how we could look at this from the perspective of our industrial world. Whilst in the history of mankind this “hard labour” is well known, as evidenced also in non-industrial societies, caregiving seemed to be demanded of fewer people and usually for shorter time periods in the past [8]. People were living shorter, less of them reached the frailty and multimorbidity characteristic of very old age in current times. Fewer infants with severe birth defects survived, most chronic diseases were self-eliminated by early death. Far more people than ever before in history survive in a state of complete dependency whilst the formal health and social care resources have become scarce and the number of informal caregivers has decreased in recent years [9,10]. This has led to some people not receiving care, as well as increasing the challenges faced by informal caregivers [8–10]. Is it possible that the societies will choose to abandon the weak? How long can they rely on unpaid hard labour? Many informal carers, classified as so-called sandwich generation, are finding themselves as consumed by their role [11] – they are expected to both work professionally, provide informal care to a dependent parent or relative if such is needed, whilst simultaneously taking care of their own children and combine these different roles. In most societies across the world informal care is still regarded as a familial obligation, not the public responsibility – most carers cannot count on short-term leaves, cash benefits, other benefits in kind or short breaks from caring duties [12].

The ideology of ‘neoliberalism’, ‘free trade’ or ‘globalization’ with its three trademark demands – privatisation, government deregulation and deep cuts to social spending – does not improve the situation of carers and care recipients [13–15]. It’s clear that in non-industrial societies government does not provide social welfare and services cannot be hired. However, the social welfare in the context of informal care in many developed and developing countries is far from being sufficient. We may want to ask: what is and will be the impact of economic growth, technological developments and industrialisation on the lives of informal caregivers and recipients, on all of us – as we will all probably find ourselves in one of these roles sooner or later in our lives? The importance of investment in broader societal factors (housing, work conditions, education, safety, addressing care recipient’s illness stigma) for carers to be able to carry on with their roles is evidenced in numerous studies [6], however it does not seem to comply with the global economic demands. What about those who are not so lucky to carry the burden of combining the role of a carer with other professional and personal responsibilities? What about the poorest? What about the most vulnerable ones? What about those with high mortgages? And those with unstable working conditions? What about us?

Assisted suicide and euthanasia

Choosing death is a morally controversial theme, helping another person to die even more so in the social discourse of our ‘developed’ worlds although the demographic and technological changes described above can only make this topic appear more often. We don’t talk about ‘killing’ or ‘abandoning’ the old and severely disabled but we hear about assisted suicide and euthanasia.

I will start with saying that an assisted suicide or euthanasia can be an ultimate caregiving act. A caregiver releasing a care recipient from their suffering on the request of the ill one. It is not a matter of a simple choice, as even those who are committed to help their care recipient die, are usually torn between doubts with the painful awareness of losing the loved one: ‘Don’t know... it’s a bit scary… but I think… would I be able to do it so I would do it… but it’s murder… but I would have to take it… then I would have to do it’ [16].

I remember very well my first encounter with a patient on an intensive care ward as a physiotherapy student. An elderly lady, 88, paralysed from her neck to feet after a stroke, with metastatic cancer and other severe health conditions. I step into the room with the aim of carrying out some exercises with her and after a while she asks me: ‘Why are you doing it to me? I don’t want any rehabilitation. I want to die. Please, let me die’. And she closes her eyes with a few teardrops falling down her cheeks. It turned out later that she was childless, her husband had died several years before, she was on her own. I couldn’t bear watching her and thinking: is this a choice between life and death? Or a choice between dying later or dying now, whereas to die later involves more suffering [17]? She was begging all medical staff to let her die. I spent only a week on this ward, each day visiting her and slowly deepening one of the most important relationships in my life with the woman: brushing her hair or watching a green tree outside the window – these were her greatest, last and short meaningful joys of life. I found out later that she was moved to a palliative care setting shortly after I had left and died a few weeks later. In Poland assisted suicide or euthanasia is illegal, she had to wait for death attached to extensive medical equipment keeping her weak body alive against her conscious will.

A choice to die: free or forced?

The society has a duty to care for the ill and it’s crucial to make their lives as good and comfortable as possible. It can also be morally acceptable for those who want to die to choose to die. However, the issue of a choice is crucial: what are the reasons and are people really protected to make a voluntary choice in our demanding globalised world?

There is a danger that the suffering care recipient will not make their choice freely as there may be a pressure from the family or from society leading to feelings of a duty to die or to guilt about being alive. Each situation of an informal carer is different and individual, making the evaluation of choice a highly difficult one. It could be argued though that if governments will leave carers and care recipients to their own devices, this may lead to the pressure not to act on a voluntary basis when thinking about assisted suicide or euthanasia. Let us invoke ourselves of the words of Taro Aso, the deputy prime minister of Japan, 7 years ago from now: “I would wake up feeling increasingly bad knowing that [treatment] was all being paid for by the government. […] The problem won't be solved unless you let them hurry up and die” [18]. Rising welfare costs is not welcome by many governments but the exemplary quote cited above gives an implicit impression that care recipients may be a burden to their families and society in general. Is the inference that if people cannot contribute economically to society, they are useless? A burden to the carer who has their own duties to carry on with? We should enquire: whether their requests to die be voluntary or expressed more or less under pressure or even forced [17]? People should be protected in such a way that the choice to die is theirs and theirs only. At the same time social welfare is essential to sustain a free choice through supporting carers in their caregiving work (as this is like work) if they decide or are made to provide informal care. Otherwise, what can these different pressures lead to?

Concluding

Abandoning or killing the care recipients as assisted suicide or euthanasia remain a rare and/or controversial phenomenon, strongly influenced by cultural views and social discourse on what is desirable and expected of both carers and care recipients. The differences in this stance may be incredibly small between the non-industrial and industrial worlds. The privileged ‘developed’ world may be in many cases more oppressive for the carers and care recipients than non-industrial societies if the free choice to choose between life and death is not protected. Empathy, understanding, support and awareness of the situation of caregivers and care recipients is needed if we are to remain socially sensitive to human fate and its intricacies. Citing Albert Camus, ‘Whether the earth or the sun revolves around the other is a matter of profound indifference […]. The meaning of life is the most urgent of questions’ [19]. And the meaning of life reveals itself most intensively and changes when we deal with death, life, and suffering – our own but also those closest to us.

Recommended reading:

1. Crone P. Pre-industrial societies: Anatomy of the pre-modern world. Simon and Schuster; 2015.
2. Report for Selected Country Groups and Subjects. [cited 1 Oct 2020]. Available: www.imf.org
3. Glascock AP, Feinman S. Social Asset or Social Burden: An Analysis of the Treatment of the Aged in Non-Industrial Societies. In: Fry C, editor. Aging, Culture and Health. New York: JF Bergin; 1981. pp. 34–47.
4. Foner N. Caring for the elderly: A cross-cultural view. In: Hess B, Markson EW, editors. Growing Old in America New Perspectives on Old Age. 1985. 5. Simmons LW. The role of the aged in primitive society. 1945.
6. Zarzycki M, Seddon D, Bei E, Morrison V. Why do they care? A qualitative systematic review and meta-synthesis of informal caregiver motivations and willingness to provide care. 2000. Unpublished.
7. Park HJ. Legislating for Filial Piety: An Indirect Approach to Promoting Family Support and Responsibility for Older People in Korea. J Aging Soc Policy. 2015;27: 280–293. doi:10.1080/08959420.2015.1024536
8. Krulik T, Hirschfeld MJ. Hard labor. Workers in family caregiving. Israel Social Science Research.pdf. Isr Soc Sci Res. 1986;4: 84–98.
9. Pickard L. A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032. Ageing Soc. 2015;35: 96–123.
10. Revenson T, Griva K, Luszczynska A, Morrison V, Panagopoulou E, Vilchinsky N, et al. Caregiving in the illness context. Springer; 2016.
11. Morrison V, Williams K. Gaining longitudinal accounts of carers’ experiences using IPA and photograph elicitation. Front Psychol. 2020.
12. Bouget D, Spasova S, Vanhercke B. Work-life balance measures for persons of working age with dependent relatives in Europe. A study of national policies. Eur Soc Prot Netw. Brussels: European Commission; 2016. Available: https://www.researchgate.net/publication/305115112
13. Baldassar L, Baldock CV, Wilding R. Families caring across borders: Migration, ageing and transnational caregiving. Springer; 2006.
14. Croucher K, Gilroy R, Bevan M, Attuyer K. The mobilities of care in later life: exploring the relationship between caring and mobility in the lives of older people. Ageing Soc. 2020; 1–22.
15. Klein N. The Shock Doctrine: The rise of disaster capitalism. Macmillan; 2007.
16. Sand L, Olsson M, Strang P. What are motives of family members who take responsibility in palliative cancer care? Mortality. 2010;15: 64–80. doi://dx.doi.org.ezproxy.bangor.ac.uk/10.1080/13576270903537690
17. de Beaufort ID, van de Vathorst S. Dementia and assisted suicide and euthanasia. J Neurol. 2016;263: 1463–1467. doi:10.1007/s00415-016-8095-2
18. McCurry J. Let elderly people “hurry up and die”, says Japanese minister. In: The Guardian [Internet]. 2013 [cited 1 Oct 2020]. Available: https://www.theguardian.com/world/2013/jan/22/elderly-hurry-up-die-japanese
19. Camus A. The myth of Sisyphus. Penguin UK;

About the author: Mikołaj Zarzycki is a psychologist and physiotherapist, a PhD student in Health Psychology and an early stage researcher employed by Bangor University in the UK. He is a Marie Skłodowska-Curie ITN fellow, working within the EU-funded ENTWINE project focused on informal care. Personally, a husband, father and a vegetarian for ideological reasons.

Would you like to know more? Contact the author: m.zarzycki@bangor.ac.uk