Ethical Theory and Moral Practice

, Volume 19, Issue 2, pp 409–424 | Cite as

Mandatory Disclosure and Medical Paternalism

Article

Abstract

Medical practitioners are duty-bound to tell their patients the truth about their medical conditions, along with the risks and benefits of proposed treatments. Some patients, however, would rather not receive medical information. A recent response to this tension has been to argue that that the disclosure of medical information is not optional. As such, patients do not have permission to refuse medical information. In this paper I argue that, depending on the context, the disclosure of medical information can undermine the patient’s ability to exercise her autonomy or have therapeutically detrimental effects. In the light of these insights I go on to develop a context-sensitive approach to medical disclosure. The advantage of this account is that it addresses concerns on both sides of the debate; whilst it acknowledges that patients do not have an exercisable ‘right not to know,’ it allows that in some cases medical information ought to be withheld.

Keywords

Patient autonomy Paternalism Epistemic paternalism Informed consent The right not to know 

References

  1. Ahlbrecht GL, Devlieger PJ (1999) The disability paradox: high quality of life against all odds. Soc Sci Med 48(8):977–988CrossRefGoogle Scholar
  2. Ahlstrom-Vij K (2013) Epistemic paternalism: a defence. Palgrave Macmillan, BasingstokeCrossRefGoogle Scholar
  3. Andorno R (2004) The right not to know: an autonomy based approach. J Med Ethics 30(5):435–439CrossRefGoogle Scholar
  4. Angell M (2004) Excess in the pharmaceutical industry. Can Med Assoc J 171(12):1451–1453CrossRefGoogle Scholar
  5. Arneson RJ (1999) Human flourishing versus desire satisfaction. Soc Philos Policy 16:113–142Google Scholar
  6. Beauchamp TL, Childress JF (1989) Principles of biomedical ethics, 3rd edn. Oxford University Press, New YorkGoogle Scholar
  7. Blumenthal-Barby JS (2013) Choice architecture: a mechanism for improving decisions while preserving liberty. In: Coons C, Weber M (eds) Paternalism: theory and practice. Cambridge University Press, Cambridge, pp 178–196CrossRefGoogle Scholar
  8. Bortolotti L (2013) The relative importance of undesirable truths. Med Health Care Philos 16(4):683–690CrossRefGoogle Scholar
  9. Bortolotti L, Widdows H (2011) The right not to know: the case of psychiatric disorders. J Med Ethics 37(11):673–676CrossRefGoogle Scholar
  10. Botti S, Iyengar SS (2006) The dark side of choice: when choice impairs social welfare. J Public Policy Market 25(1):24–38CrossRefGoogle Scholar
  11. Brock DW (1993) Life and death: philosophical essays in biomedical ethics. Cambridge University Press, CambridgeCrossRefGoogle Scholar
  12. Bullock EC (2014) Free choice and patient best interests. Health Care Anal :1–19. doi:10.1007/s10728-014-0281-8
  13. Bullock EC (2015a) A normatively neutral definition of paternalism. Philol Q 65(258):1–21CrossRefGoogle Scholar
  14. Bullock EC (2015b) Assisted suicide and the proper role of patient autonomy. In: Cholbi M, Varelius J (ed) New directions in the ethics of assisted suicide and euthanasia. International Library of Ethics, Law, adn the New Medicine Series 64. Springer, NetherlandsGoogle Scholar
  15. Burton RA (2008) On being certain: believing you are right even when you're not. St. Martin’s Press, New YorkGoogle Scholar
  16. Carel H (2007) Can I be ill and happy? Philosophia 35(2):95–110Google Scholar
  17. Cohen F, Lazarus RS (1973) Active coping processes, coping dispositions, and recovery from surgery. Psychosom Med 35:375–389CrossRefGoogle Scholar
  18. Colloca L, Miller FG (2011) The nocebo effect and its relevance for clinical practice. Psychosom Med 73(7):598–603CrossRefGoogle Scholar
  19. Cosgrove L (2011) The DSM, big pharma, and clinical practice guidelines: protecting patient autonomy and informed consent. Int J Fem Approaches Bioethics 4(1):11–25CrossRefGoogle Scholar
  20. Davis L (2010) The bioethics of diagnosis: a biocultural critique of certainty. J Bioethic Inq 7(2):227–235CrossRefGoogle Scholar
  21. Deakin T, McShane CE, Cade JE, Williams RD (2005) Group based training for self-management strategies in people with type 2 diabetes mellitus. Cochrane Database Syst Rev 2, CD003417Google Scholar
  22. Declaration of Helsinki: Ethical Principles for Research Involving Human Subjects (1964; amended 2008) http://www.wma.net/en/30publications/10policies/b3/. Accessed 10 Nov 2008
  23. Dworkin G (1983) Paternalism. In: Sartorius R (ed) Paternalism. University of Minnesota Press, Minneapolis, pp 19–34Google Scholar
  24. Ende J, Kazis L, Ash A, Moskowitz MA (1989) Measuring patients’ desire for autonomy: decision making and information seeking preferences among medical patients. J Gen Intern Med 4(1):23–30CrossRefGoogle Scholar
  25. English V, Romano-Critchley G, Sheather J, Sommerville A (2004) Medical ethics today: the BMA’s handbook of ethics and law, 2nd edn. BMJ Books, LondonGoogle Scholar
  26. Flanagan, SM (2012) Adverse outcomes after colposcopy. Dissertation, University of BirminghamGoogle Scholar
  27. Frank JE (2008) The colposcopic examination. J Midwifery Womens Health 53(5):447–452CrossRefGoogle Scholar
  28. Galaal K, Bryant A, Deane KH, Al-Khaduri M, Lopes AD (2011) Interventions for reducing anxiety in women undergoing colposcopy. Cochrane Database Syst Rev 12, CD006013Google Scholar
  29. Gawande A (2003) Complications: a surgeon's notes on an imperfect science. Profile Books, LondonGoogle Scholar
  30. Germino BB, Mishel MH, Belyea M, Harris L, Ware A, Mohler J (1998) Uncertainty in prostate cancer: ethnic and family patterns. Cancer Pract 6(2):107–113CrossRefGoogle Scholar
  31. Ghane A, Huynh HP, Andrews SE, Legg AM, Tabuenca A, Sweeny K (2014) The relative importance of patients’ decisional control preferences and experiences. Psychol Health 29(10):1–29CrossRefGoogle Scholar
  32. Goldacre B (2013) Bad Pharma: how medicine is broken and how we can fix it. Fourth estate, LondonGoogle Scholar
  33. Gordon JS (2014) Medical paternalism and patient autonomy. In: Boylan M (ed) Medical ethics, 2nd edn. Wiley Blackwell, West Sussex, pp 72–83Google Scholar
  34. Grisso T, Appelbaum PS (1998) Assessing competence to consent to treatment: a guide for physicians and other health professionals. Oxford University Press, OxfordGoogle Scholar
  35. Harris J, Keywood K (2001) Ignorance, information and autonomy. Theor Med Bioeth 22(5):415–436CrossRefGoogle Scholar
  36. Higgs R (1999) On telling patients the truth. In: Kuhse H, Singer P (eds) Bioethics: an anthology. Blackwell, Oxford, pp 507–512Google Scholar
  37. Hodkinson K (2013) The need to know – therapeutic privilege, a way forward. Health Care Anal 21:105–129CrossRefGoogle Scholar
  38. Husted J (1997) Autonomy and a right not to know. In: Chadwick R, Levitt M, Shickle D (eds) The right to know and the right not to know. Ashgate, Aldershot, pp 55–68Google Scholar
  39. Jackson J (2001) Truth, trust and medicine. Routledge, LondonGoogle Scholar
  40. Jones MA (1999) Informed consent and other fairy stories. Med Law Rev 7:103–134CrossRefGoogle Scholar
  41. Kaplan RM (1991) Health‐related quality of life in patient decision making. J Soc Issues 47(4):69–90CrossRefGoogle Scholar
  42. Kaplan SH, Greenfield S, Ware JE (1989) Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care 27(3):S110–S127CrossRefGoogle Scholar
  43. Karkazis K (2008) Fixing sex: intersex, medical authority and lived experience. Duke University Press, DurhamCrossRefGoogle Scholar
  44. Katz J (2002) The silent world of doctor and patient. The John Hopkins University Press, BaltimoreGoogle Scholar
  45. Klein G (1996) Sources of power: how people make decisions. MIT Press, USAGoogle Scholar
  46. Lamb D (1995) Therapy abatement, autonomy and futility: ethical decisions at the edge of life. Avebury, AldershotGoogle Scholar
  47. Laurie G (2014) Recognizing the right not to know: conceptual, professional, and legal implications. J Law Med Ethics 42(1):53–63CrossRefGoogle Scholar
  48. Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D (2010) Patient participation: current knowledge and applicability to patient safety. Mayo Clin Proc 85(1):53–62CrossRefGoogle Scholar
  49. Luce MF (2005) Decision making as coping. Health Psychol 24:S23–S28CrossRefGoogle Scholar
  50. Malpas P (2005) The right to remain in ignorance about genetic information--can such a right be defended in the name of autonomy? N Z Med J 118:71–78Google Scholar
  51. Manson NC, O’Neill O (2007) Rethinking informed consent in bioethics. Cambridge University Press, CambridgeCrossRefGoogle Scholar
  52. Miller SM, Mangan CE (1983) Interacting effects of information and coping style in adapting to gynaecologic stress: should the doctor tell all? J Pers Soc Psychol 45(1):223–236CrossRefGoogle Scholar
  53. Mishel MH (1997) Uncertainty in acute illness. Ann Rev Nurs Res 15(1):57–80Google Scholar
  54. Montori VM, Guyatt GH (2007) Corruption of the evidence as threat and opportunity for evidence-based medicine. Harv Health Policy Rev 8(1):145–155Google Scholar
  55. New B (1999) Paternalism and public policy. Econ Philos 15(1):63–83CrossRefGoogle Scholar
  56. Newbould M (2013) Intersex, medicine and pathologization. In: Carel H, Cooper R (eds) Health, illness and disease: philosophical essays. Acumen, Durham, pp 161–180Google Scholar
  57. Ost DE (1984) The ‘Right’ not to know. J Med Philos 9:201–312CrossRefGoogle Scholar
  58. Parascandola M, Hawkins J, Danis M (2002) Patient autonomy and the challenge of clinical uncertainty. Kennedy Inst Ethics J 12(3):245–264CrossRefGoogle Scholar
  59. Rhodes R (1998) Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge. J Med Philos 23:10–30CrossRefGoogle Scholar
  60. Robinson A, Thomson R (2001) Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care 10:i34–i38CrossRefGoogle Scholar
  61. Scanlon T (1993) Value, desire and quality of life. In: Nussbaum MC, Sen A (eds) The Quality of Life. Clarendon Press, Oxford, pp. 185–200Google Scholar
  62. Schneider C (1998) The practice of autonomy: patients, doctors, and medical decisions. Oxford University Press, OxfordGoogle Scholar
  63. Shiffrin SV (2000) Paternalism, unconscionability doctrine, and accommodation. Philos Public Aff 29(3):205–250CrossRefGoogle Scholar
  64. Stewart MA (1995) Effective physician-patient communication and health outcomes: a review. Can Med Assoc J 152:1423–1433Google Scholar
  65. Takala T (2001) Genetic ignorance and reasonable paternalism. Theor Med Bioeth 22(5):485–491CrossRefGoogle Scholar
  66. Thompson C, Dowding D (2001) Responding to uncertainty in nursing practice. Int J Nurs Pract 38(5):609–615Google Scholar
  67. United Nations Educational, Scientific and Cultural Organization (UNESCO) (1997) Universal Declaration on the human genome and human rights http://portal.unesco.org/en/ev.php-URL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.html. Accessed 4 Dec 2014
  68. Veatch RM (2000) Doctor does not know best: why in the new century physicians must stop trying to benefit patients. J Med Philos 25(6):701–721CrossRefGoogle Scholar
  69. Von Korff M, Katon W, Rutter C, Ludman E, Simon G, Lin E, Bush T (2003) Effect on disability outcomes of a depression relapse prevention program. Psychosom Med 65:938–943CrossRefGoogle Scholar
  70. Walker T (2013) Respecting autonomy without disclosing information. Bioethics 27(7):388–394CrossRefGoogle Scholar
  71. Weingarten SR, Henning JM, Badamgarav E, Knight K, Hasselblad V, Gano A Jr, Ofman JJ (2002) Interventions used in disease management programmes for patients with chronic illness—which ones work? Meta-analysis of published reports. Br Med J 325(7370):925–933CrossRefGoogle Scholar
  72. Wennberg JE (2010) Tracking medicine: a researcher’s quest to understand health care. Oxford University Press, OxfordGoogle Scholar
  73. Wilson J (2005) To know or not to know? Genetic ignorance, autonomy and paternalism. Bioethics 19(5–6):492–504CrossRefGoogle Scholar
  74. World Medical Association (WMA) (2005) Declaration of lisbon on the rights of the patient http://www.wma.net/en/30publications/10policies/l4/. Accessed 4 Dec 2014

Copyright information

© Springer Science+Business Media Dordrecht 2015

Authors and Affiliations

  1. 1.Central European UniversityBudapestHungary

Personalised recommendations