A woman in her thirties with confusion

A previously healthy woman in her mid-thirties consulted a doctor due to confusion, apathy, sleep disturbance and involuntary weight loss over the preceding month. Treatment with oral escitalopram 10 mg daily was initiated on suspicion of depression. Two weeks later, the woman was admitted to the emergency department. Upon admission, she spoke with considerable latency and had difficulty expressing herself. Her general condition was good and vital signs were normal. Findings from physical examination and preliminary blood tests were normal. There was no evidence of focal neurological deficits.

Brain CT and MRI revealed a 23 mm large expansive process and perifocal oedema in the left thalamus, exerting a mass effect on the adjacent left lateral ventricle (Figures 1a–d). A chest CT revealed a 5.6 cm tumour in the right upper lobe (Figure 2). Enlarged mediastinal paratracheal lymph nodes were observed on the right side (station 4R) in addition to enlarged paraaortic lymph nodes (station 6R).

Lung cancer with metastasis to the lymph nodes and brain was now suspected. Fine-needle aspiration cytology after bronchoscopic biopsy of lymph node 4R showed metastasis from poorly differentiated non-small cell carcinoma, confirming the diagnosis.

Anti-oedema therapy with oral dexamethasone 4 mg x 4 was initiated with a tapered dosage. The patient was on maternity leave and living with her parents, who were now taking care of her child, when her mother called the hospital to report that the patient was increasingly apathetic, had difficulty expressing herself and did not want to return to the hospital to undergo gamma knife radiosurgery and a new biopsy. Following a discussion among the doctors and nurses in the Department of Pulmonary Medicine who had attended to the patient, it was determined that she did not have the capacity to consent. This was based on her reduced ability to express a conscious choice, difficulty understanding relevant information and the likely consequences of not consenting to diagnosis and treatment. A formal decision was made under chapter 4A (5) of the Patient and User Rights Act (Norway), and it was decided to transport the patient by ambulance, by force if necessary, to carry out further diagnostics and cancer treatment.

When the ambulance personnel arrived, the patient did not want to go with them, but she reluctantly entered the ambulance without the need for coercion. The following day, the patient underwent gamma knife radiosurgery and was cooperative throughout the process. Further bronchoscope-guided fine-needle aspiration of lymph node 4R was carried out under anaesthesia. Cytology showed non-small cell carcinoma with no clear adeno or squamous differentiation, consistent with non-small cell carcinoma NOS (not otherwise specified). Immunohistochemical testing for ALK and ROS1 was negative, and next-generation sequencing (NGS) identified no actionable mutations for targeted treatment. PDL1 expression was estimated at < 75 %. Blood tests for paraneoplastic syndromes were negative.

During her hospital stay, the patient exhibited fluent and non-fluent aphasia, apraxia and possible confusion with some anxiety. Her substantially reduced food and fluid intake had led to rapid weight loss, necessitating supplemental parenteral nutrition and fluids. An interdisciplinary assessment by a psychiatrist, neurologist, neurosurgeon and pulmonologist concluded that the patient did not have the capacity to consent. Every effort was made to provide voluntary health care, but coercion was also used. For example, ward nurses physically restrained her when she tried to leave the ward. They also sedated her with intravenous or subcutaneous midazolam, administered parenteral nutrition and carried out personal hygiene care without her consent. One nurse wrote a report of concern about the insufficient justification for the formal decision to use coercion because several of the staff were unsure of how much coercion could be exercised, and what constituted an infringement of the patient's rights. The County Governor was consulted, and a more comprehensive formal decision to use coercion was drawn up, giving more detailed descriptions of which interventions were absolutely vital for the patient's medical care. The social worker played a key role in the treatment team and helped the patient's parents to apply for financial support from NAV and temporary guardianship.

The case and the forced treatment were discussed with representatives from the Clinical Ethics Committee and the pulmonology group. Whether to administer immune checkpoint inhibitors as monotherapy or in combination with chemotherapy was specifically discussed. We chose to administer the maximum possible treatment, even if this meant more adverse effects for the patient. Five weeks after her admission date, the patient started systemic therapy consisting of intravenous pembrolizumab 200 mg, pemetrexed 750 mg and carboplatin 630 mg, administered every three weeks for four cycles. Dexamethasone was continued for oedema around the brain metastasis.

The patient's condition in hospital gradually deteriorated, with alternating apathy and agitation, aphasia and undernutrition. Challenging situations arose in the ward, with nurses having to restrain the patient to prevent her leaving. The staff considered this highly stressful, particularly because they were uncertain what the patient understood and was able to communicate.

The anatomical location of the brain metastasis corresponded with the symptoms. Nevertheless, there was discussion of whether the patient could also have severe depression, anxiety and/or be experiencing a crisis reaction, and if so, which medications might help. During repeated psychiatric observations, the primary aetiology of her condition was identified as organic brain changes. Antipsychotics were advised against in favour of treatment with benzodiazepines in the form of oral diazepam 5 mg up to x 4, subcutaneous/intravenous midazolam 1–2 mg and the continuation of oral escitalopram 10 mg daily.

Three weeks after the date of admission, an EEG showed no definite abnormality. A brain MRI taken four weeks after the gamma knife radiosurgery showed persistent perifocal oedema around the largest metastasis. After thorough discussion with an oncologist and neurosurgeon, the decision was made to administer intravenous bevacizumab 400 mg every fourteen days, for a total of four courses, as anti-oedema therapy.

Two months after her initial admission to hospital, the patient was transferred to a rehabilitation facility, also under a decision to use coercion. Two weeks later, her condition worsened, and she exhibited increasing agitation and distress. She had visual and auditory hallucinations and was assessed as having an elevated risk of suicide. She was therefore moved to the psychiatric ward for compulsory observation in accordance with chapter 3 (8) of Norway's Mental Health Care Act. The patient subsequently denied having suicidal ideation, and no psychotic symptoms, challenging behaviour or delusions were observed. She expressed a desire to continue her cancer treatment and had hopes of eventually returning home. After six days, a decision was made to end the compulsory observation in the psychiatric ward as there was no evidence that the patient had a severe mental disorder. However, her apathy, aphasia and disorientation were considered too severe for her to return to the rehabilitation centre. She was transferred back to the Department of Pulmonary Medicine. Two weeks later, another attempt at rehabilitation was made. After three weeks in rehabilitation, she was transferred to primary care as her functional status remained unstable and insufficient for her to live at home. She still spoke with considerable latency but was communicating more with the staff. With no other primary care options available, she was moved to a nursing home in her home municipality. Two months later, she was offered sheltered housing beside elderly patients, but neither the patient nor her family wanted this. Instead, the patient moved in with her parents and child after a total of six months in the institution. The decision on coercive treatment expired one month later.

After discharge, the patient's mental health recovered and she returned to her normal weight. Following initial systemic therapy, which also included carboplatin and bevacizumab, she received intravenous pembrolizumab and pemetrexed every three weeks for a total of two years. She initially remembered little of what she had gone through, but subsequently expressed a need to process and understand her experience, and her memories have gradually resurfaced in 'flashbacks'. The topic of prognosis has been raised in several consultations, with the patient asking if she is healthy now. We informed her that the absence of signs of relapse four years after symptom onset and two years after her treatment was paused gives hope for a long-term positive outcome. Imaging shows only minor residual changes (Figure 3). The patient now lives in her own flat with her child and is looking for work. Here functional status is 0 (normal functioning).