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Health Care Analysis

Open Access 30-12-2023 | Original Article

An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities

Authors: Jenny Lindberg, Linus Broström, Mats Johansson

Published in: Health Care Analysis

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Abstract

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically “non-actionable,” we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients’ comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient’s situation and the underlying considerations shaping health care professionals’ choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person.
Footnotes
1
Such is the case in a wide range of national legislation, e.g. in the United States (with variations according to state), Australia (Australian Charter of Health Care Rights), the United Kingdom in its common law preventing battery, Canada, and Sweden (the Swedish Patient Act).
 
2
In health care systems where all or a part of the cost is paid by patients, there are data suggesting that the public wants information about treatments that may be given at a greater expense, if these treatments contribute to prolonged survival, quality of life, or if there is no other treatment available [3]. For the complexities of discussing financial issues with patients in health care systems where the patient pays for a major part of the cost of care, such as the United States, see also e.g. [4].
 
3
A reasonable patient standard [5] should not be confused with the far more demanding subjective standard – a standard which few jurisdictions have adopted and which “judges the adequacy of information by reference to the specific informational needs of the individual person rather than by the hypothetical reasonable person” (p. 125) [6]. Building on what is reasonable to someone is obviously not limited to clinical settings, but has for example also been discussed in the context of research [7].
 
4
This has been considered the case in a Swedish legal context (p. 214–215) [21].
 
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Metadata
Title
An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities
Authors
Jenny Lindberg
Linus Broström
Mats Johansson
Publication date
30-12-2023
Publisher
Springer US
Published in
Health Care Analysis
Print ISSN: 1065-3058
Electronic ISSN: 1573-3394
DOI
https://doi.org/10.1007/s10728-023-00475-7