This paper is particularly concerned with shame, sometimes considered the ‘master emotion’, and its possible role in affecting the consent process, specifically where that shame relates to the issue of diminished health literacy. We suggest that the absence of exploration of affective issues in general during the consent process is problematic, as emotions commonly impact upon our decision-making process. Experiencing shame in the healthcare environment can have a significant influence on choices related to health and healthcare, and may lead to discussions of possibilities and alternatives being closed off. In the case of impaired health literacy we suggest that it obstructs the narrowing of the epistemic gap between clinician and patient normally achieved through communication and information provision. Health literacy shame prevents acknowledgement of this barrier. The consequence is that it may render consent less effective than it otherwise might have been in protecting the person's autonomy. We propose that the absence of consideration of health literacy shame during the consent process diminishes the possibility of the patient exerting full control over their choices, and thus bodily integrity.
SternbergEM. Emotions and disease: from balance of humors to balance of molecules. Nat Med1997; 3: 264–267.
2.
RaceK. The Gay Science: Intimate Experiments with the Problem of HIV. London: Routledge, 2018.
3.
DrobacJAGoodenoughOR. Exposing the myth of consent. Ind Health L Rev2015; 12: 471–531.
4.
SupadyAVoelkelAWitzelJ, et al.How is informed consent related to emotions and empathy? An exploratory neuroethical investigation. J Med Ethics2011; 37: 311–317.
5.
FerrerRAMendesWB. Emotion, health decision making, and health behaviour. Psychol Health2018; 33: 1–6.
6.
ScheffTJ. Shame in self and society. Symb Interact2003; 26: 239–262.
7.
World Health Organization. Health promotion. Geneva: WHO, 1998. p.20.
8.
ParikhNSParkerRMNurssJR, et al.Shame and health literacy: the unspoken connection. Patient Educ Couns1996; 27: 33–39.
9.
DavidoffF. Shame: the elephant in the room. BMJ Qual Safety2002; 11: 2–3.
10.
Van Der PijlMVerhoevenCHollanderM, et al.The ethics of consent during labour and birth: episiotomies. J Med Ethics2023; 49: 611–617.
11.
(2015) UKSC 11.
12.
There are semantic differences between ‘capacity’ and ‘competence’ in law, although these may be applied differently on either side of the Atlantic. No distinction is made in common medical parlance, the two terms being used as synonyms to indicate a particular mental state of affairs: e.g the patient has the mental capacity to consent to this intervention; they are competent to make this decision. For the purposes of this paper, as nothing hinges on the semantic difference, the terms competence and capacity are used interchangeably.
13.
Mental Capacity Act 2005 Code of Practice (London: TSO 2007).
14.
CarminatiL. Behavioural economics and human decision making: instances from the health care system. Health Policy2020; 124: 659–664.
15.
DonnellyM. Healthcare decision-making and the law. Cambridge: Cambridge University Press, 2008, p. 269–270.
16.
WoolfV. On Being Ill. Conneticut: Wesleyian University Press, 2012.
17.
DonnellyM. Healthcare decision-making and the law. Cambridge: Cambridge University Press, 2008, p. 270.
18.
WoolfV. On Being Ill, p4. The quote here is more extensive than that employed by Donnelly.
19.
FellnerCHMarshallJR. Kidney donors—the myth of informed consent. Am J Psychiatry1970; 126: 1245–1251.
20.
CharlandLC. Is Mr. Spock mentally competent? Competence to consent and emotion. Phil Psych Psychology1998; 5: 67–81.
21.
CharlandLC. Appreciation and emotion: theoretical reflections on the MacArthur treatment competence study. Kennedy Inst Ethics J1998; 8: 359–376.
22.
SimmerlingM. Choosing to be harmed: Autonomy and its limits in living organ donor transplantation. Chicago: University of Illinois, 2005.
23.
[1992] 4 All ER 649 (CA).
24.
NHS Trust v T [2004] EWHC 1279 (Fam); Fitzpatrick v White [2007] IESC 51; Montgomery v Lanarkshire Health Board [2015] SC 11.
25.
NHS Trust v T [2004] EWHC 1279 (Fam), at [53].
26.
HermannHTrachselMElgerBS,et al.Emotion and value in the evaluation of medical decision-making capacity: a narrative review of arguments. Front Psychol2016; 7: 765.
27.
TangneyJPStuewigJMashekDJ. Moral emotions and moral behavior. Ann Rev Psychol2007; 58: 345–372.
28.
LazareA. Shame and humiliation in the medical encounter. Arch Int Med1987; 147: 1653–1658.
29.
BrennanMEBellKHamidG, et al.Consumer experiences of shame in clinical encounters for breast cancer treatment: who do you think you are–Angelina Jolie?Breast2023; 72: 103587.
30.
DolezalLLyonsB. Health-related shame: an affective determinant of health?Med Humanit2017; 43: 257–263.
31.
NathansonD. Shame and pride: affect, sex and the birth of the self. New York: WW Norton & Company, 1992.
32.
SalterMHallH. Reducing shame, promoting dignity: a model for the primary prevention of complex post-traumatic stress disorder. Trauma Violence Abus2022; 23: 906–919.
33.
DolezalLGibsonM. Beyond a trauma-informed approach and towards shame-sensitive practice. Humanit Soc Sci Com2022; 9: 214–223.
34.
WilliamsB. Shame and Necessity. 2nd ed. Oakland: University of California Press, 2008 .
35.
SaraiyaTLopez-CastroT. Ashamed and afraid: a scoping review of the role of shame in post-traumatic stress disorder (PTSD). J Clin Med2016; 5: 94.
36.
HutchinsonPDhairyawanR. Shame and HIV: strategies for addressing the negative impact shame has on public health and diagnosis and treatment of HIV. Bioethics2018; 32: 68–76.
37.
GreenleesGArcherL. Guilt, shame and negative emotion in undergraduate medical education: is there a role for Balint groups?Med Humanit2022; 48: 449–450.
See for example Mental Capacity Act 2005 (UK), and the Assisted Decision-making (Capacity) Act 2015 (Ireland).
40.
NutbeamD. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int2000; 15: 259–267.
41.
BerkmanNDSheridanSLDonahueKE, et al.Low health literacy and health outcomes: an updated systematic review. Ann Int Med2011; 155: 97–107.
42.
NeterEBraininE. Association between health literacy, eHealth literacy, and health outcomes among patients with long-term conditions: a systematic review. Eur Psychol2019; 24: 68–81.
43.
NutbeamD. Health promotion glossary. Health Promot Int1998; 13: 349–364.
44.
KindigDAPanzerAMNielsen-BohlmanL (eds). Health literacy: a prescription to end confusion. Washington DC: National Academy Press, 2004.
45.
BerkmanNDDeWaltDAPignoneMP, et al.Literacy and Health Outcomes. Evidence Report Technology Assessment no. 87. Rockville, MD: Agency for Healthcare Research and Quality, 2004.
46.
SørensenKPelikanJMRöthlinF, et al.Health literacy in Europe: comparative results of the European health literacy survey (HLS-EU). Eur J Public Health2015; 25: 1053–1058.
47.
SuttonEPembertonSFahmyE,et al.Stigma, shame and the experience of poverty in Japan and the United Kingdom. Soc Pol Society2014; 13: 143–154.
48.
BakerDWParkerRMWilliamsMV,et al.The health care experience of patients with low literacy. Clin Res1993; 41: 584A.
49.
WolfMSWilliamsMVParkerRM, et al.Patients’ shame and attitudes toward discussing the results of literacy screening. J Health Communication2007; 12: 721–732.
50.
DeWaltDAPignoneMMaloneR, et al.Development and pilot testing of a disease management program for low literacy patients with heart failure. Patient Educ Couns2004; 55: 78–86.
51.
BatterhamRWHawkinsMCollinsPA, et al.Health literacy: applying current concepts to improve health services and reduce health inequalities. Public Health2016; 132: 3–12.
