Doctor asked ME sufferer Maeve Boothby-O’Neill to remain in hospital, inquest hears

A senior doctor pleaded with a young woman suffering from severe chronic fatigue syndrome to remain in hospital rather than go home, an inquest heard.

Maeve Boothby-O’Neill, 27, had suffered with myalgic encephalomyelitis (ME) for a decade and was being treated at the Royal Devon and Exeter Hospital before she died at home in October 2021.

An inquest in Exeter heard Miss Boothby-O’Neill had been admitted to the hospital three times that year for treatment for malnutrition.

It was during her second admission, between May and June, that she told doctors she wished to be discharged and to continue treatment at home in Exeter.

The hearing is focusing on the last few months of Miss Boothby-O’Neill’s life, by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.

Dr Kashyap Patel, a consultant in diabetes and endocrinology, told the hearing he had tried to persuade Miss Boothby-O’Neill to remain on his ward but, as she had mental capacity, he could not stop her leaving.

“That was tough, and I wasn’t expecting that. I was very honest and said I didn’t know why she wanted to go home,” he said.

“I was prepared to keep her in as long as was needed. There was no intention from my side to send her home because it was a very difficult situation we were in.

“It was made very clear to me by an experienced occupational therapist later on that she requires 24-hour care.”

Dr Patel said he spoke with Miss Boothby-O’Neill’s mother, Sarah Boothby, and sought advice from other doctors, including her GP as well as social workers and occupational therapists.

“I said, ‘please stay’. I found it very hard, but I also understood her point of view that she felt hospital is not the right place for her,” he said.

“I am a very persuasive consultant. I tried speaking to Sarah as well. I understood both sides and I had a very frank chat with Sarah that she couldn’t manage.

“She was very clear she couldn’t manage, Maeve knows you can’t manage, but still wants to go home.

“I spoke to safeguarding because Maeve wants to go home and her mum struggles, but she wants to support her daughter.

“We offered respite, but Maeve wasn’t keen on that. The options were getting limited.”

During this period, Miss Boothby-O’Neill was being fed nutrition via a syringe into her mouth and hospital records recorded a “slow and steady improvement” in her daily calorie intake.

Dr Patel said Miss Boothby-O’Neill remained in hospital while her intake of calories increased, and an urgent care package organised.

“She expressed her wish to be discharged home as soon as possible irrespective of whether the long-term care package was in place,” he told the inquest.

“Maeve also stated she was happy with the care (her) mum has provided and felt safe going home and appreciated her mum was under significant strain and would like her to have some support long-term.

“Maeve also agreed to meet her social worker to plan her long-term care.

“Maeve was able to demonstrate a capacity to make her own decisions about her care and her discharge destination.

“Therefore, the only reasonable option that could have been arranged in the short term to respect Maeve’s wish to go home was to discharge her with the urgent care team and additional support from her mother.”

Asked if he could have done any more for Miss Boothby-O’Neill, Dr Patel replied: “I found it very tough and difficult, and it is often the case with any medical professional when someone is making seemingly irrational choices.

“The situation becomes how best we can facilitate the choice as best we could.”

He added: “If I had known the future, I maybe would have tried my extreme persuasion skills, but I did not know the future. Had I known that I would have definitely tried.”

The inquest, which is due to last two weeks, continues.