Definition of “disease-specific ethical issue” (DSEI)

We base our definition of “disease-specific ethical issue” (DSEI) on an ethical approach called principlism [9]. Principlism, which is used as a basis by many ethical and medical professionalism frameworks [10], is based on four “mid-range” principles: beneficence, non-maleficence, respect for autonomy, and justice. Each principle formulates obligations that are valid prima facie. This means that they must be followed in a particular case unless there is a conflict with another obligation that is of equal or greater weight. The principles themselves, though, are only general orientations. In a specific case, they require further content, have to be put in context and have to be balanced against one another if they conflict.

A DSEI, therefore, can arise when one or more (contextualized) principles have been inadequately considered. For example, most text passages that were subsumed under our DSEI 2 Dialysis dealt with avoidable issues of neglecting the burdens that result from dialysis, which would go against the principle of non-maleficence (see DSEI 2 in Table 1). On the other hand, a DSEI might arise because of conflicts between two or more (contextualized) principles. This is for example the case when secondary interests (financial or non-financial) conflict with the primary interest of balanced provision of information and therapeutic options (see DSEI 3.1a–c Conflict of Interestin Table 1). Ethical Issues Associated With Renal Care Essay.

Eligibility criteria

For our purpose of a spectrum of clinical ethical issues, we used the following criteria for inclusion of a publication in our review: (I) it had to describe a DSEI related to clinical care of kidney failure patients; (II) it is possible for individual care-givers or care institutions to deal with the particular DSEI, i.e. dealing with the DSEI is not dependent on health policy or political decision-making (therefore we excluded, for example, transplantation issues such as those related to living donors; the only transplantation issue we included was the decision to put a particular patient on the transplantation list); (III) the publication was not only focused on ethical issues when researching kidney failure (issues of research ethics); and (IV) the publication had to be a peer-reviewed journal article, a scientific book (monograph, textbook, edited volume…) or a national-level report. Ethical Issues Associated With Renal Care Essay. The methodological quality, beyond the fact that the paper was identified in scientific databases and published in peer-reviewed journals, did not serve as a criterion of eligibility criteria, as the quality of a paper was irrelevant to the purpose of the review: to identify the spectrum of clinical ethical issues.

Interpretation of the validity and relevance of DSEIs

Two DSEIs were mentioned in many different papers: “heterogeneous criteria to withhold (not to start it) OR withdraw dialysis” (mentioned in 26 papers). Others were mentioned by few sources: “non-financial conflicts of interest” (n = 1), “heterogeneous referral criteria for transplantation” (n = 3), and “adequate assessment of the cognitive abilities” (n = 3). This raises the question of what conclusions may be drawn from this information. Numerous references for one DSEI could suggest that this DSEI is of high importance. Conversely, little attention paid in the literature to an issue could indicate its secondary importance. However, the fact that there are few references for a DSEI could also be ascribed to its complexity or controversial nature. Also, recent issues with high relevance for current practice might be addressed less often in the literature. A DSEI having many references may just mirror the fact that it is a standard topic in (current) academic discourse (and, possibly, with funding agencies), which may not necessarily correspond to the issue’s clinical ethical importance.

Therefore, normative conclusions should not be lightly drawn from the number of references to a DSEI. It is fair to say, then, that one advantage of trying to establish a full spectrum of DSEIs for kidney failure is the inherent methodological tendency to avoid either excluding a DSEI because it is rarely addressed in the literature, or regarding a DSEI as important because it is covered extensively. Ethical Issues Associated With Renal Care Essay.

Relevance assessments could also be misled by the variety of text passages that address DSEIs. An ethical issue (e.g., neglecting the principle of justice) can be addressed by referring to statistical data, for example: “Nephrologists withheld dialysis from 25 of 357 (7%) ESRD patients compared with 42 of 193 (22%) withheld by primary care physicians (P F 0.001)” [13] and: “There are emerging data that referrals for renal transplantation, the treatment of choice for ESRD, are made less often from for-profit than from not-for-profit dialysis providers” [12]. However, it can also be addressed in a narrative way, for example: “A 58 year old physician, one of the pioneers in introducing peritoneal dialysis for chronic renal failure, consistently coerces his patients into maintenance peritoneal dialysis rather than maintenance hemodialysis. By contrast, another nephrologist at the same facility, who is expert in hemodialysis, does not even consider peritoneal dialysis in the choices presented to newly uremic patients.” [14]

While narrative description of DSEIs is associated with qualitative research, case studies, or even anecdotal evidence based on the author’s own observation, statistical description of DSEIs is clearly associated with quantitative research. As with the prevalence of references to a DSEI, one should be careful when ascribing relevance or precedence to a DSEI solely based on the kinds of description found in the scientific or scholarly literature. This is especially important against the backdrop of evidence-based approaches. These may devaluate narrative descriptions because of established “levels of evidence” [15], where evidence from, e.g., case studies, are ranked as very weak evidence. In ethics, however, even a case study can show what ethical challenges or conflicts of ethical principles can occur in a specific situation. Ethical Issues Associated With Renal Care Essay. Nonetheless, the distinction between narrative and statistical description may trigger a discussion about the methodological quality of DSEI descriptions, as well as about what level of confidence we should have in the literature from which we obtain our DSEIs.

Uses of the DSEI spectrum

Such a systematic review of ethical issues in kidney failure can serve several purposes. First, it can raise awareness about the variety of ethical issues and the complexity of ethical conduct in the care of patients with kidney failure, provided that the spectrum is well presented (see above).

Second, it can form a basis for the systematic development of informational and training materials for health professionals, relatives, patients, or the wider public. It is hardly possible (and probably not necessary) to address all issues exhaustively. Thus, prioritization procedures with (clinical/practical/political) relevance as core criteria are important. The spectrum could be an objective ground for discussions of the relevance (e.g., from a clinical or policy perspective) of certain ethical issues. As mentioned earlier, our spectrum does not allow conclusions to be drawn directly about the relevance of a particular DSEI. Nevertheless, as the relevance of a certain issue strongly depends on the context, the spectrum could be a valuable starting point for researching that context, and thus, the relevance of specific issues. For clinical purposes, the views of clinicians and/or patients are crucial (for example, Grönlund et al. performed narrative interviews with nurses and physicians which allowed them to identify relevant issues in this context [16, 17]). Thus, our findings could make the process of identifying and agreeing on key DSEIs systematic and transparent.

Other possible fields of application include guideline (CPG) development, and other local and national polices for clinical care and continuing medical education (CMA) programs. We would like to emphasize that current CPGs are developed by and with clinical and other experts and hence will include a relevant sample of ethical issues. The achievements of CPGs are laudable from an ethical perspective. Here, we propose the application of the presented full spectrum of DSEIs to future development or revision of CPGs addressing kidney failure. Ethical Issues Associated With Renal Care Essay.

The spectrum includes, in addition, the original documents from which the DSEIs emerge, as well as the relevant underlying basic ethical principles (Table 1). This information is useful in the process of drafting recommendations or developing strategies to deal with the ethical issues presented, e.g., by helping to raise awareness of the respective function of (I) the general ethical principles (e.g., “respect the autonomy of the patient”), and (II) disease and care-setting–specific adaptations (e.g., “Since there is a presumption in favor of continued life-sustaining treatment for patients who cannot and have not expressed their wishes, the patient’s right to stop dialysis in certain situations is usually difficult to achieve unless patients have explicitly stated their preferences in advance in an oral or written advance directive or have named a proxy to speak for them.”) [13], see DSEI 6.1 in Table 1). However, one should bear in mind that the quality and relevance of particular issues have not been determined. Thus, the spectrum displayed in Table 1 is of a purely descriptive nature.

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Finally, one could use the comprehensive spectrum to assess the coverage of relevant clinical ethical issues in existing practice guidelines or CMA programs. We have demonstrated such an assessment in the case of dementia guidelines [8].