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Fragility, uncertainty, and healthcare

Abstract

Medicine seeks to overcome one of the most fundamental fragilities of being human, the fragility of good health. No matter how robust our current state of health, we are inevitably susceptible to future illness and disease, while current disease serves to remind us of various frailties inherent in the human condition. This article examines the relationship between fragility and uncertainty with regard to health, and argues that there are reasons to accept rather than deny at least some forms of uncertainty. In situations of current ill health, both patients and doctors seek to manage this fragility through diagnoses that explain suffering and provide some certainty about prognosis as well as treatment. However, both diagnosis and prognosis are inevitably uncertain to some degree, leading to questions about how much uncertainty health professionals should disclose, and how to manage when diagnosis is elusive, leaving patients in uncertainty. We argue that patients can benefit when they are able to acknowledge, and appropriately accept, some uncertainty. Healthy people may seek to protect the fragility of their good health by undertaking preventative measures including various tests and screenings. However, these attempts to secure oneself against the onset of biological fragility can cause harm by creating rather than eliminating uncertainty. Finally, we argue that there are good reasons for accepting the fragility of health, along with the associated uncertainties.

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Notes

  1. The uncertainty of the patients about their health and the meaning of their symptoms may be compounded by responses to MUS by practitioners, such as hostility, frustration, and feelings of impotence [10]. These are qualitatively different to responses by practitioners to ‘regular’ medical uncertainty, as the absence of a diagnosis may lead the practitioner to question their own competence, as well as giving them feelings of failure in the face of patients’ ongoing suffering.

  2. Later in the article, we detail some of the ways in which tests may provide unreliable results, including mistakes, false negatives and false positives, and overdiagnosis; here, we focus on general uncertainty in healthcare regarding prognosis.

  3. See Renée Fox (1957) cited in [11, p. 5]; see also [12].

  4. We thank one of the editors for pointing out this distinction.

  5. This includes a growing literature on the mechanisms that doctors use to deal with uncertainty, such as denial, the seeking of specific and narrow diagnoses, the use of black humour, avoiding areas of medical practice where uncertainty is more prevalent (such as general practice, geriatrics, psychiatry), and relying on heuristics, which may be more or less biased [14].

  6. Avoiding the disclosure of uncertainty may also lead to self-deception about a doctor’s own competence or erode her capacity to recognise her limitations, with a detrimental effect on her expertise. We do not have space to explore this point further, but thank one of the editors for drawing it to our attention.

  7. The small interview study by Kathryn Ehrich et al. [17] suggests that in the context of novel procedures, patients accepted clinicians’ uncertainty and appreciated clear explanations of risk.

  8. In what follows, we do not intend to provide a comprehensive account of the ethical challenges of screening (see, e.g., [19, 20]). Rather we aim to explore potential uncertainty and vulnerability associated with at least some instances of screening.

  9. Current approaches to screening date back to the influential work of James Wilson and Gunner Jungner [21] whose 1968 principles for screening focus on the importance of screening being able to identify the early pre-symptomatic phases of significant diseases for which acceptable and effective treatment exists.

  10. For example, the NHS recommends the following routine screening for adults aged 30-64 years: cervical, breast, bowel, and prostate cancer, blood pressure, cholesterol, anaemia, thyroid, respiratory, heart, bone, kidney, and glaucoma [23].

  11. Here, we are thinking of the technical staff collecting specimens and performing analyses, as well as the doctors interpreting and reporting on the results, and other health professionals involved in diagnosis and treatment.

  12. We do not wish to imply that screening, for at least some diseases, is generally non-beneficial. Our concern is with the effects of screening on uncertainty and vulnerability, particularly where screening leads to false negatives, false positives, and overdiagnosis.

  13. Here, we discuss only overdiagnosis arising in the course of screening. There are other ways that overdiagnosis occurs, including in the context of patients presenting with symptoms. A full discussion of these matters is beyond the scope of this article; see, e.g., [27, 28].

  14. The leaflet states that of one hundred women screened, four may need more tests, one of whom is likely to have cancer. Of those diagnosed with invasive cancer, one woman will have her life saved by screening while another three will be overdiagnosed with and treated for a cancer that would never have become life threatening [33].

  15. We recognize that socio-economic factors significantly influence health status, such that the chances of suffering ill health are not equally distributed in populations. Nonetheless, even the most well off are not immune from ill health.

  16. Martha Fineman makes similar points in relation to vulnerability which she takes to be ‘a universal, inevitable, enduring aspect of the human condition, that must be at the heart of our concept of social and state responsibility’ [35, p. 166].

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Acknowledgements

We thank the editors for helpful comments on an earlier draft.

Funding

This study was funded by ARC Future Fellowship grant 130100346 (funding Rogers) and a Macquarie University Future Fellowship start up grant (funding Walker).

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Correspondence to Wendy A. Rogers.

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The authors declare that they have no conflicts of interest.

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Rogers, W.A., Walker, M.J. Fragility, uncertainty, and healthcare. Theor Med Bioeth 37, 71–83 (2016). https://doi.org/10.1007/s11017-016-9350-3

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Keywords

  • Fragility
  • Vulnerability
  • Uncertainty
  • Healthcare
  • Screening
  • Overdiagnosis