This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion on the clinical, legal and social planes.
BookmanAHarringtonM. Family caregivers: a shadow workforce in the geriatric health care system?J Health Polit Policy Law2007; 32: 1005–1041.
2.
van ExelJBobinacAKoopmanschapM,et al.The invisible hands made visible: recognizing the value of informal care in healthcare decision-making. Expert Rev Pharmacoecon Outcomes Res2008; 8: 557–561.
3.
LevinLSIdlerEL. The hidden health care system: social resources in healthcare. Naperville: Golden Apple Publications, 1981.
4.
VerbakelETamlagsrønningSWinstoneL, et al.Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health. Eur J Public Health2017; 27: 90–95.
5.
RocheV. The hidden patient: addressing the caregiver. Am J Med Sci2009; 337: 199–204. Sambasivam R, Liu J, Vaingankar JA, et al. The hidden patient: chronic physical morbidity, psychological distress, and quality of life in caregivers of older adults. Psychogeriatrics 2019; 19: 65–72; Holliday AM, Quinlan CM and Schwartz AW. The hidden patient: the CARE framework to care for caregivers. J Family Med Prim Care 2022; 11: 5–9.
6.
Cf. WongA. Disability visibility: first-person stories from the twenty-first century. New York: Vintage Books a division of Penguin Random House LLC, 2020.
7.
ÓConnorDL. Self-identifying as a caregiver: exploring the positioning process. J Aging Stud2007; 21: 169.
8.
EifertEKAdamsRDudleyW,et al.Family caregiver identity: a literature review. Am J Health Educ2015; 46: 357–367.
9.
ColomboFLlena-NozalAMercierJ, et al.Help wanted? Providing and paying for long-term care. OECD Health Policy Studies. Paris: OECD Publishing, 2011, p. 86.
10.
PetersMRandSFitzpatrickR. Enhancing primary care support for informal carers: a scoping study with professional stakeholders. Health Soc Care Community2020; 28: 645.
CarduffEFinucaneAKendallM, et al.Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources. BMC Fam Pract2014; 15: 48.
13.
Eurocarers. Explanatory note. Enabling carers to care an EU strategy to support and empower informal carers. Brussels: Eurocarers, 2019, p.9.
14.
Carduf, et al., op. cit., note 12, p. 4.
15.
CordenAHirstM. Partner care at the end-of-life: identity, language and characteristics. Ageing Soc2011; 31: 217–242.
16.
Colombo F., et al., op. cit., note 9, p. 87. RocardELlena-NozalA. Supporting informal carers of older people: policies to leave no carer behind. OECD Health Working Papers. 140. Paris: OECD Publishing, 2022.
17.
LaceyREMcMunnAWebbE. Informal caregiving patterns and trajectories of psychological distress in the UK household longitudinal study. Psychol Med2019; 49: 1652–1660.
18.
PinquartMSörensenS. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci2007; 62: 126–137.
19.
CiccarelliNVan SoestA. Informal caregiving, employment status and work hours of the 50+ population in Europe. Economist (Leiden)2018; 166: 363–396. Simard-Duplain G. Heterogeneity in informal care intensity and its impact on employment. J Health Econ 2022; 86: 102647; Rocard E and Llena-Nozal A. Supporting informal carers of older people: policies to leave no carer behind. OECD Health Working Papers, 140. Paris: OECD Publishing, 2022.
20.
Rocard E, Llena-Nozal A. op. cit., note 18, p. 15.
21.
RicoeurP. Life: a story in search of a narrator. In: DoeserMKrayJ (eds) Facts and values. Dordrecht: Martinus Nijhoff, 1986, pp.34–68.
22.
Van HoutvenCH. Standing up for my sister. Health Aff2022; 41: 1526.
23.
Ibid.
24.
TwiggJ. Models of carers: how do social care agencies conceptualise their relationship with informal carers?J Soc Policy1989; 18: 53–66. Nuffield Council on Bioethics (NCOB). Dementia: Ethical Issues. London: Nuffield Council on Bioethics, 2009, p.119.
25.
LoboEHFrølichAAbdelrazekM, et al.Information, involvement, self-care and support-the needs of caregivers of people with stroke: a grounded theory approach. PLoS One2023; 18: e0281198.
26.
GarvelinkMMNganguePAAdekpedjouR, et al.A synthesis of knowledge about caregiver decision making finds gaps in support for those who care for aging loved ones. Health Aff2016; 35: 619–626.
27.
PointonB. The view of the family career. In: HughesJCLloyd-WilliamsMSachsGA (eds) Supportive care for the person with dementia. Oxford: Oxford University Press, 2010, pp.30.
28.
Nuffield Council on Bioethics (NCOB). Dementia: ethical issues. London: Nuffield Council on Bioethics, 2009, p.119.
29.
Wong-CornallCParsonsJSheridanN,et al.Extending “continuity of care” to include the contribution of family carers. Int J Integr Care2017; 17: 11, 1–17.
AbelEK. Hearts of wisdom: American women caring for kin, 1845–1940. Cambridge, MA: Harvard University Press, 2000, p.2.
34.
TrontoJC. Caring democracy: markets, equality, and justice. New York: New York University Press, 2014.
35.
KittayEF. Human dependency and Rawlsian equality. In: MeyersDT (eds) Feminists rethink the self. Milton Park, Abingdon, Oxon: Routledge, 1997, pp.219–266.
36.
RawlsJ. Kantian constructivism in moral theory: the Dewey lectures. J Philos1980; 77: 546.
37.
RawlsJ. A theory of justice: revised edition. Cambridge, MA: The Belknap Press of Harvard University Press, 1999, p.83.
38.
SenA. Equality of what? In: McMurrinS (ed) Tanner lectures on human values, 1. Cambridge: Cambridge University Press, 1980, pp.197–220.
39.
FraserNHonnethA. Redistribution or recognition? A political-philosophical exchange. London: Verso, 2003.
40.
Carduf, et al., op. cit., note 12, p. 5.
41.
CroninMMcGillowayS. Supporting family carers in Ireland: the role of the general practitioner. Ir J Med Sci2023; 192: 951–961. O'Connor C. Caring for dementia carers: the role of general practitioners in Ireland. Ir J Med Sci 2011; 180: 327–332. Peters M., et al., op. cit., note 10; Carduf, et al., op. cit., note 12.
42.
Ibid.
43.
Cronin M, McGilloway S, op. cit., note 40: 955.
44.
GreenwoodNMackenzieAHabibiR, et al.General practitioners and carers: a questionnaire survey of attitudes, awareness of issues, barriers and enablers to provision of services. BMC Fam Pract2010; 11: 100. Peters M., et al., op. cit., note 10; Carduf, et al., op. cit., note 12.
CharonR. Narrative medicine as witness for the self-telling body. J Appl Commun Res2009; 37: 120.
47.
Peters M., et al., op. cit., note 10, p. 645.
48.
WashingtonK. Already toast: caregiving and burnout in America. Boston: Beacon Press, 2021, p.53
49.
WeSS. Caring enough: the dementia patient who abused US. Narrat Inq Bioeth2020; 10: 112–114.
50.
Ibid., p. 113.
51.
VosEEde BruinSRvan der BeekAJ,et al.It’s like juggling, constantly trying to keep all balls in the air: a qualitative study of the support needs of working caregivers taking care of older adults. Int J Environ Res Public Health2021; 18: 8.
52.
Rocard E, Llena-Nozal A., op. cit., note 18, p. 24.
YoungIM. Inclusion and democracy. New York: Oxford University Press, 2000.
55.
Ibid: 75.
56.
Virgil. The Aeneid. New York: Vintage Books, 1983, p.58. Cf. also Steiner JF. Carrying my father. J Gen Intern Med 2017; 32: 589–590.
57.
FrankAW. The wounded storyteller: body illness and ethics. Chicago: University of Chicago Press, 1995.
58.
RenzenbrinkI. Relentless self-care. In: BerzoffJSilvermanPR (eds) Living with dying: a handbook for end-of-life healthcare practitioners. New York: Columbia University Press, 2004, pp.848–867.
