Crossing the sea for preferred place of death

By Dr Ben Anderson, IMT2, Respiratory Department, Royal Bolton Hospital (Ben.anderson@doctors.org.uk)
Co- Authors: Dr Rebecca Lennon, Palliative Care Department, Royal Bolton NHS Foundation Trust and Dr Rizwan Ahmed, Respiratory Department, Royal Bolton NHS Foundation Trust

 

England and Northern Ireland (NI) are part of the United Kingdom. However, due to devolution, healthcare is organised separately in these two areas, with NHS England and the NI Health and Social Care board responsible in each area respectively. Here, we recount the story of a patient who’s preferred place of death was Northern Ireland, but who had been hospitalised in England.

Case

An 86-year-old gentleman from Northern Ireland came to England on holiday to visit his family. Unfortunately, whilst in England, he fell ill, and required emergency admission to hospital. He was treated for community acquired pneumonia and pulmonary oedema. Despite maximal medical treatment he continued to deteriorate and it was felt he was unlikely to survive this acute illness.

He became drowsy and developed a hypoactive delirium, and consequently was assessed to have lost capacity to make decisions about his care.

Due to his continued deterioration and poor prognosis, we arranged a best interests meeting with his wife. It was agreed that his wish would have most likely been to get back to NI to spend his final days and hours at home.

Difficulties encountered

Most aspects of his care were surprisingly easy to organise and coordinate. What was much more challenging was how we physically got him back to his home in Northern Ireland.

He was too unwell to transfer by sea or air without medical supervision. Medical transport is very expensive, and the quotes we received from private firms were in excess of £10,000.

We had no experience of transporting a patient to Northern Ireland. Interestingly, nor did our counterparts in Northern Ireland!

We found a standard operating procedure for patients that require repatriation to Northern Ireland after being transferred to England for a medical procedure that is not available in Northern Ireland. This is known as an ‘extra-contractual referral’. But when we explored whether we could make use of this pathway, we were told that because this patient had been admitted as an emergency to the English hospital, he was not covered by this.

So we were stuck.

A breakthrough

This story has a happy ending; after multiple phone calls over several days, eventually we spoke to somebody at the patient flow team of the Western Trust in Northern Ireland, who put us through to a transport company who organise transfers for the purposes of extra-contractual referrals (Woodgate Aviation). Speaking to the transport company directly, and explaining the predicament, seemed to galvanise all involved: a slot for transport was booked. Our executive team met, discussed the situation, and arranged funding with Woodgate Aviation.

Fortunately, the patient remained stable during the considerable time taken to arrange his transfer. 9 days after his best interests meeting, he was taken back home to his preferred place of death, with follow up in place at his home in NI.

Why so difficult?

While there were 2654 extra-contractual referral transfers between April 2018 and August 2021, nobody involved in this case had previous experience with transferring a patient who had presented as an emergency. The lack of an existing pathway or standard operating procedure, meant we were, ultimately, just phoning telephone numbers at random to try to get some help.

As mentioned before, financing this transfer was costly, and a major issue. The absence of a pathway means there is no established guidelines on which subdivision of the Department of Health is responsible for meeting this cost. The NHS England ‘who pays’ document outlines the cost liabilities for Clinical Commissioning Groups (CCGs) in various clinical scenarios:
• Paragraph 19.10 dictates that emergency care and emergency ambulance transfers are the responsibility of the CCG of the emergency department the patient presented to.
• However, this transfer was classified as planned rather than an emergency.
• Non-emergency patient transport is the responsibility of the patient’s home CCG (Paragraph 10.2, 11.2).
• This is not mentioned in the ‘cross-border issues’ section of the document, and caused further confusion and difficulty given the absence of CCGs in NI.

Funding was discussed at executive level, but not agreed in the first instance. The English CCG paid initially in order to expedite, with the aim of remuneration through negotiation in the future.

Why so important?

In a rapidly deteriorating patient, the window in which transfer would have been possible could easily have been missed. It was only through the persistence of our staff who continued to phone all the services required, multiple times a day, that meant that his transfer home was eventually possible at all. Increasing the number of people able to die in a place of their choosing is a part of the NHS Long Term Plan. It would have been disappointing for this patient and his family to have missed his opportunity to achieve this.

Summary

• Achieving preferred place of death was challenging because of the lack of an established Standard Operating Procedure/pathway to transfer non-urgent patients between England and NI.
• Earlier involvement at executive level may have helped streamline this process and allow for a quicker transfer.
• Healthcare services are devolved to each of the four nations within the UK, but arrangements must be made to remove obstacles in achieving patients’ preferred places of care and death across borders.

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