Diagnosing patients with Munchausen syndrome is embroiled in complexity as there are complex issues relating to ethical dilemmas faced by the medical teams managing these vulnerable patients.
This point was made in a case report on the ‘Patients’ right to confidentiality and sharing information with colleagues: The dilemma in managing a patient with Munchausen syndrome’ which was authored by C.U. Welhenge and A. Premawardhena (both attached to the Colombo North Teaching Hospital in Ragama with the latter also being attached to the Kelaniya University's Medical Faculty) and published in the Journal of the Ceylon College of Physicians' 55th Volume's First Issue, last month.
Munchausen syndrome is defined as a “disorder characterised by the intentional production of symptoms or disabilities” to assume the sick role in the absence of external incentives (the World Health Organisation's ‘The International Classification of Diseases - 10 Classification of Mental and Behavioural Disorders. Diagnostic criteria for research’). The management of these patients is a challenge to the treating physicians due to the complexity in identifying the disorder, timely interventions as well as the ethical considerations in relation to diagnosis and management (J.C. Huffman and T.A. Stern's ‘The diagnosis and treatment of Munchausen's syndrome’ and F.C. Kass's ‘Identification of persons with Munchausen’s syndrome: Ethical problems’). If not identified early, these patients can pose a serious threat to the healthcare system as well as to the patients themselves (A. Sinha and T. Smolik's ‘Striving to die: Medical, legal, and ethical dilemmas behind factitious disorder’). It is common to see patients with this disorder seeking treatment at multiple institutions, leaving the institutions as soon as a diagnosis is made with poor adherence to psychiatric therapies which leads to a vicious cycle (J.M. Mandalaparthy's ‘Exploring the Munchausen syndrome’). This highlights the importance of shared knowledge within the medical community to recognise these patients early, to prevent repeated investigations as well as for the early initiation of treatment. However, this knowledge can lead to stigmatisation and a negative impact on the patient. Therefore, clinicians must be extremely cautious when managing a patient with this disorder.
Case presentation
Welhenge et al. presented the case of a young female with a complex medical history who was repeatedly investigated for pyrexia (raised body temperature/fever) of unknown origin (PUO) at different healthcare institutions who was ultimately diagnosed with a factitious disorder. Welhenge et al. sought to highlight the clinical and ethical dilemmas that they faced in managing this patient and the timely need in raising awareness among the medical community to make sure that this patient receives the necessary psychiatric interventions at the earliest.
A 32-year-old woman with a complicated medical history including a diagnosis of systemic lupus erythematosus (SLE) (an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body) with lupus nephritis (a type of kidney disease caused by lupus), IgA nephropathy (an inflammation of the glomeruli [the tiny network of blood vessels that are the cleaning units of the kidneys and which filter waste and remove extra fluids from the blood] of the kidney), meningitis (an infection and inflammation of the fluid and three membranes protecting the brain and spinal cord) with ocular toxoplasmosis (an infection in the back of the eye) and provoked deep vein thrombosis (a blood clot in the deep vein system causing the obstruction of the blood flow which is caused by a clear inciting factor, including transient factors) following cholecystectomy (surgery to remove the gallbladder - a small organ under the liver - which stores a digestive juice called bile that is made in the liver), presented with an acute febrile illness. She was initially managed for dengue fever. As she continued to have fever spikes beyond day seven, even after the recovery of the platelet counts, without a clinically evident focus of infection, more investigations were done with a view of identifying the cause. Blood cultures became positive for coagulase negative Staphylococcus aureus (gram positive, aerobic organisms distinguished by the group's inability to form coagulase, an enzyme that promotes thrombus formation via the conversion of fibrinogen into fibrin) and a mildly elevated procalcitonin (a protein) level was noted, which supported the commencement of antibiotics. A microbiology-related opinion was sought, and antibiotics were changed, yet the fever continued. Her fever continued beyond a cumulative period of nearly 90 days. Investigations for PUO including serial echocardiograms, autoimmune panels, a bone marrow biopsy, and serial repeat cultures were all normal. More advanced radiological investigations, including contrast enhanced computed tomography and a positron emission tomography scan too were not helpful in identifying a cause for the ongoing fever.
Despite the prolonged hospital stay and multiple procedures carried out, she appeared to be in very good spirits, which became a point of fascination and suspicion. Some members of the clinical team suspected that this might be a factitious fever whilst others believed that it is wrong to do so “in the backdrop of illnesses like SLE”. Careful observations by the clinical team and the initiation of directly observed temperature measurements led to fever free intervals while she continued to have fever during unobserved temperature measurements.
Her knowledge about diseases and diagnosis was astonishing despite a lack of formal medical training. Apart from clear evidence of previous ocular toxoplasmosis, all the “medical history” was what she recounted and there were no medical records to support it. During an effort to trace her past records, Welhenge et al. were able to contact her father, which was surprising as she claimed to be an orphan. Her father supported Welhenge et al.'s suspicion that she keeps moving from one hospital to another without a proper diagnosis.
With this evidence, Welhenge et al. referred her back to the psychiatry team, whose junior members had initially reported that she had no psychiatric abnormality. This time however, the senior psychiatrists concurred that she had a strong psychological (psychotic) component which was suggestive of a factitious disorder which could explain her clinical condition. The diagnosis was explained to her, and she was counselled by the psychiatric team. It was suggested to mention this in her clinical records for future references. She was discharged with a plan to review if the fever recurs. Over the next few months, Welhenge et al. came to know that she had been admitted to four hospitals in the region with a history of “fever” and on each occasion, she had been commenced on extensive investigations for pyrexia of unknown aetiology. According to Welhenge et al., it is very likely that even today, she is being investigated in some hospital for an illness with sophisticated investigations and that the results will be baffling to the clinicians.
Discussion
Patients with suspected PUO warrant extensive investigations, especially when they also have a complex medical problem like SLE in the past (O. Mourad, V. Palda and A.S. Detsky's ‘A comprehensive evidence based approach to fever of unknown origin’). The treatment, the cost of investigations often pending the final confirmation as well as the prolonged hospital stay, is a burden to the already overburdened hospital system (R. Premathilaka, T. Darshana, C. Ekanayake, K.C. Chathurangani, I. Mendis, S. Perinparajah, M. Shashiprabha, S. Nishshanka, Y. Tilakaratna and A. Premawardhena's ‘PUO and the cost of care in a tertiary care institute in Sri Lanka’). When such a system is being tested by a patient with Munchausen syndrome who has an almost “real” illness, the system will be stretched to the extreme.
This patient presented with a background of many complex medical illnesses without any confirmative evidence to support them, apart from her ocular pathology. Her medical history was too significant to be ignored. Prolonged fever in an immune-suppressed patient cannot be taken lightly and Welhenge et al. evaluated the patient extensively. Although with time Welhenge et al. felt that the patient might have a factitious illness, it was difficult to ignore the persistently positive blood cultures along with a slightly positive procalcitonin level and daily fever spikes on the fever chart. This was confounded by the assurance given to Welhenge et al. by the psychiatrists that the patient was of sound mind.
The evaluation for PUO in this patient over a period of 90 days cost the system a minimum of Rs. 745,000. This value was for the investigations alone. The total healthcare cost would be much higher. The patient always maintained that her illness was real and was highly resistant to follow psychiatric treatment. Upon leaving Welhenge et al. hospital, during her subsequent admissions to different medical institutions, she had undergone lumbar punctures and bone marrow biopsies for which she consented without any reluctance. Welhenge et al. realised much to their dismay that she had not shown any of the previous diagnosis cards and that her “behaviour issue” had not been identified by the other medical teams. At this point, Welhenge et al. faced the dilemma about the issues pertaining to “confidentiality” and disclosing their findings with their medical colleagues in sister institutions.
There are a few situations in which sharing patient information without expressed consent is not considered as a breach in confidentiality. This would include when obtaining his/her consent is impractical, when it is done in the best interest of the public or when such an act is done in the best interest of the patient (P. Kumar and M.L. Clark's "Clinical medicine"). These situations are exceptions where the medical team may be doing more harm to the patient and the society, by not disclosing this information (M.D. Robertson and I.H. Kerridge's “’Through a glass, darkly': The clinical and ethical implications of Munchausen syndrome").
Patients such as these are not common but clearly not unique. The failure to share information among colleagues and between specialties and not seeking appropriate mental health support has led to multiple surgical procedures and subsequently even death by suicide (Sinha et al.).
Ethicists deliberating on disclosing and sharing information of patients with factitious disorders and Munchausen syndrome with medical colleagues of other institutes should consider the conflicting issues of the holy grail of not violating patient confidentiality. The potential benefits will provide for the patient (for example by preventing unnecessary procedures) and the greater benefit for the society (e.g. by cost saving). Even if disclosure is deemed necessary without the patient's approval, the patient should be informed that the information will be passed to the relevant parties. i.e.: the disclosure should never be deceitful (per Kass).
Treating her underlying behavioural problem would be the ideal solution for this scenario. In this specific instance, according to Welhenge et al., they failed to do so, as early diagnosis was delayed and when the diagnosis was finally reached, she refused to accept the diagnosis and left the medical institute.