Assessment of lower urinary tract function in patients with symptoms of dysfunction or pain: Is obtaining an accurate objective diagnosis a privilege of some patients or a right (with possibility to refuse) of all patients?

Rosier P1

Research Type

Clinical

Abstract Category

Ethics

Best Ethics Abstract (Joint)
Abstract 451
Conservative Management
Scientific Podium Short Oral Session 29
Saturday 10th September 2022
10:05 - 10:12
Hall G1
Bladder Outlet Obstruction Incontinence Underactive Bladder Urgency/Frequency Stress Urinary Incontinence
1. University Medical Center Utrecht, The Netherlands
In-Person
Presenter
P

Peter F.W.M. Rosier

Links

Abstract

Hypothesis / aims of study
Symptoms of lower urinary tract dysfunction (LUTD) are very prevalent. A person LUT symptoms will enter the health care system when the level of bother has exceeded her, or his personal threshold. A first–line physician will subsequently use knowledge of the specific patient's epidemiological background, medical history and a physical examination to obtain a provisional diagnosis. Subsequent treatment has acceptable outcomes for many diseases and dysfunctions, especially in primary care.
Questions arise however, when the management, based on the initial diagnosis, fails. Was the diagnosis correct? Was the treatment dose sufficient? Should lifestyle be more severely adapted? Or: Is a more invasive treatment needed? Ultimately if concerns persist, possibly after trying a second treatment, a proportion of patients turns to second-line care. 
Second-line care is often in-hospital care and has a dual purpose, invasive or complex treatments are (better) possible and there are ample possibilities to obtain an objective diagnosis. Regarding LUTS-LUTD, guidelines recommend using non-invasive objective testing and also, recommend considering objective assessment for most symptom syndromes (LUTS-BPO; SUI-s(yndrome); UUI (or OAB)-s; ICBPS. The guidelines do however, not specify which arguments should lead to invasive testing and or how log trial and error should continue. Medical practice guidelines (in general) for syndromes, usually provide a series of ‘red flags’ leading to specific considerations, but the guidelines for LUTD-syndromes lack these. It is thus left to the discretion of the treating physician whether trial and error management is continued or, whether objective assessment is ordered. With this ambiguity in our guidelines, the decision of an individual physician becomes leading. 
With the patient perspective in mind it is although, not clear whether or not objective assessment is a patient right or, a privilege depending on the physicians view. This is a narrative of the ethical dilemmas surrounding the rights of the patient to be precisely informed about the nature of their dysfunction.
Study design, materials and methods
Ethical principles, guidelines for good clinical practice and statements about patient rights, are used as the background for these considerations.
Results
Patients that experience symptoms of signs of dysfunction are worried about the cause. It is not unlikely that their concerns further increase when an initial management fails. Anxiety about disease in the diagnostic phase is very prevalent and e.g. fear of malignant disease is a good example.(PMID: 21369377) Declarations concerning patient-rights state that patients have the right to [cited from AMA e.g.,] ‘receive information from their physicians and to have opportunity to discuss the benefits, risks, and costs of appropriate treatment alternatives, including the risks, benefits and costs of forgoing treatment. Patients should be able to expect that their physicians will provide guidance about what they consider the optimal course of action for the patient based on the physician’s objective professional judgment.’ Most relevant seems: ‘information….treatment’ and ‘course of action’. This AMA statement is followed by the right ‘to ask questions about their health status’. Most patient rights statements (e.g.UK-NHS; EU–Directive 2011/24/EU) predominantly focus on the information that the treating physician should provide about treatment. Little is included about the required precision of and, transparency about the diagnosis before treatment. One guideline from the Indian Ministry of Health(1) includes: [cited] ‘Every patient has the right to know what is the illness that they are suffering, its causes, the status of the diagnosis, provisional or confirmed, expected costs of treatment’. This statement implies openness about the diagnosis beiing provisional or presumed, if that is the case. 
Opinions about health information vary between more paternalistic/Confucian societies/healthcare systems versus those that support individual autonomy although, not specifically regarding diagnosis.(3) Disclosure of diagnosis, or the decision to not disclose, may be subject to debate in palliative care, malignancy or psychiatric illness (PMID: 26420014, PMID: 34562324) but not clearly in benign potentially treatable dysfunctions.
Contemporary ethical principles are potentially relevant to consider whether objective assessment is a patient’s right or privilege: the normative (deontological) ethics; the utilitarianism and the discourse ethics. The normative ethics asks ‘us’ to do good, to do our best. Regarding openness and information there seems no discrepancy in ethical statements; physicians acknowledge that patients need (want or deserve) information. It implies that diagnostic information is presented sufficiently precise and clear to the patient, but this is not stated very clearly and specific and, contrasting with the recommendations to provide precise and complete information about the proposed treatment(s) and alternatives. According to the statements it seems therefore not ‘wrong’ to not disclose a precise diagnosis, but probably this shows the lack of patient’s input in the statements. Utilitarianism, the theory of morality that advocates actions that foster happiness or pleasure and oppose actions that cause unhappiness or harm, may be an argument for physicians to avoid actions when these are thought to cause unhappiness. Invasive diagnostics, requiring punctures, injections or catheters are unpleasant, or carry risks. Failed invasive therapy also causes unhappiness. A quick and simple route to management may causes immediate (physician and patient-) happiness. And not invasive diagnostic tests are preferred over infvasive tests if they can give reliable information. A trial and error route with persisting diagnostic uncertainty will however certainly not increase quality of life of the patient and the ‘uncertainty is the worst illness’ may become predominant (PMID: 21369377). Utilitarian maximalization may also strive to do the good for the ‘most of the people’. Equality and limited resources (time, money) may play a role. If a treatment or a diagnostic test is (very) expensive the availability will be limited to a proportion of patients, but also: expenses for diagnostics should outweigh the information gained with it, including its relevance for management.  
Regarding the discourse ethics perspective; Weighing of all elements: Our guidelines appear to contain some implicit arguments; Invasive diagnostic tests for LUTD are: risky, painful and not relevant for management. This is not explicitly stated, also not evidence based and certainly little supported from the patient perspecive, however this implicit opinion seems to direct the recommendations. That trial and error management may be frustrating for the patient and causing anxiety because of uncertainty, or may be costly is also not stated nor specifically demonstrated in reliable studies. None of the managements however, available for the syndromes lead to a (nearly) perfect cohort-outcome and, the common 60-70% 'good' outcomes are not an indicator of absolute success. Treatment, based on the patient's individual precise staged and graded pathophysiology, thus better individualized management, may lead to better outcome but this is insufficiently acknowledged in our LUTD guidelines.
Interpretation of results
The lack of discussion about (or lack of inclusion) the patient's view or expectations and, especially the implicit (utilitarian) ‘diagnostic risk minimization’ from the physicians perspective has probably led to the fact that objective diagnosis has become a privilege for patients.
Concluding message
Ethical issues regarding patient information regarding diagnosis are discussed. Ethical principles and patient perspective, as well as scientific evidence should be used and balanced to recommend practice. Not many (ethical) arguments seem to exist, to suport that confirmed objective diagnosis is only a patient's privilege. Given the statements about patient rights and the normative ‘do good’ it seems, within the ethical discourse frame, necessary to adapt our guidelines and, to at least inform our patients whether management is based on a provisional or a confirmed diagnosis.
References
  1. https://web.archive.org/web/20190119174620/https://mohfw.gov.in/sites/default/files/PatientCharterforcomments.pdf
  2. Murgic L, Hébert PC, Sovic S, Pavlekovic G. Paternalism and autonomy: views of patients and providers in a transitional (post-communist) country. BMC Med Ethics. 2015 Sep 29;16(1):65. doi: 10.1186/s12910-015-0059-z. PMID: 26420014; PMCID: PMC4589086.
  3. Sims E, Nelson KJ, Sisti D. Borderline personality disorder, therapeutic privilege, integrated care: is it ethical to withhold a psychiatric diagnosis? J Med Ethics. 2021 Jul 14:medethics-2021-107216. doi: 10.1136/medethics-2021-107216. Epub ahead of print. PMID: 34261801.
Disclosures
Funding None Clinical Trial No Subjects None
Citation

Continence 2S2 (2022) 100425
DOI: 10.1016/j.cont.2022.100425

15/02/2024 05:12:29