How the Home Office refused a dying woman’s wish

Nell wanted to have her partner Arif fly to the UK for her last months of life. The government objected. 

NS

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Practising in a semi-rural location in the south-west of England I have few jet-setting patients, but Nell is one exception. With a background in geology and metallurgy, she spends extended stints in both Africa and Indonesia as a consultant to various precious-metal-mining companies. During her latest furlough back in the UK she began to feel fatigued and nauseous, associated with some abdominal pain. Initially she put it down to a virus, or perhaps the result of working and playing too hard. When she noticed her skin turning yellow, though, she thought she’d better come in.

Jaundice has a bewildering array of possible causes, which can be divided into three broad groups. The yellow colouration reflects a build-up of bilirubin, a chemical formed when haemoglobin, the oxygen-carrying pigment in red blood cells, is broken down. Any disease in which red blood cells are rapidly destroyed will swamp the liver’s ability to clear bilirubin from the blood – known as pre-hepatic jaundice. Conversely, anything that causes extensive liver damage will result in a failure to clear even the normal amounts of bilirubin formed from natural red cell turnover – intra-hepatic jaundice. Lastly, the bilirubin extracted by the liver is ordinarily excreted in the form of bile. If something blocks the duct draining bile into the gut, post-hepatic (or obstructive) jaundice results.

As a woman in her mid-forties, any potential diagnosis could have applied to Nell. There can be clues in the history. Patients with obstructive jaundice will notice their stools turning pale – bile gives bowel motions their usual brown colour. This had happened to Nell, and initially I hoped there might be a simple explanation: a gallstone blocking the bile duct. But blood tests painted a more complicated picture. The pattern seen in obstructive jaundice was present, but so too were markers of liver inflammation (hepatitis).

The likeliest culprit in the UK would be infection with hepatitis A virus. But given Nell’s travels, more serious hepatitis B infection was also possible. The expat lifestyle Nell described also brought alcohol into the frame. And autoimmune conditions, in which the body’s defence system mistakenly attacks the liver, had also to be considered. I arranged an urgent ultrasound scan to define what was blocking the flow of bile, together with tests for the different causes of hepatitis.

The results were worrying. Something was obstructing the bile duct, but it didn’t appear to be a stone. And there were numerous abnormal areas in Nell’s liver, which the ultrasound couldn’t definitively diagnose.

I referred her urgently to gastroenterology. For a short time there was hope that the picture might still represent something potentially treatable. Nell had been due to return to Indonesia, where her partner, Arif, lives, so she made provisional arrangements. But samples obtained while inserting a stent to relieve the bile duct obstruction sadly confirmed the underlying diagnosis: cholangiocarcinoma, a rare tumour of the duct lining. With deposits scattered throughout the liver, cure is impossible. Nell faced an agonising choice. In the end she decided to stay put in the UK with family and friends, and have Arif fly over to join her for what will be her last months of life.

Following the Windrush scandal, we have been assured that the “hostile environment” policy has been abandoned. Yet the Conservative government remains wedded to its target of reducing net migration to the tens of thousands annually. I have read reports of arts organisations finding it impossible to get permission for musicians, writers and performers to visit the UK. But the pressure on immigrant numbers can be truly measured by the Home Office’s decision to refuse Arif a visa to be with his dying partner.

I have written in support of Nell’s appeal, as has our local Macmillan nurse. Nell is facing an awful future. Just how awful, only the Home Office has the power to decide. 

This article appears in the 29 March 2019 issue of the New Statesman, Guilty