Dale is non-verbal and has learning disabilities and dementia. He lives in a supported living placement. He was recently taken into hospital with aspiration pneumonia (where inhaled food has caused an infection).

Dale had a nasogastric (NG) tube put in, which is a thin, flexible, temporary plastic tube which is inserted through the nose and throat into the stomach to deliver nutrition, fluids, and medication.

POhWER received a referral for Independent Mental Capacity Advocacy support for a serious medical treatment decision for a long-term plan for feeding Dale.

Lauren, a POhWER advocate spoke to his doctor who provided the information he was using to weigh up the pros and cons of the available options for Dale.

• He explained that NG tubes are temporary, only lasting 4-6 weeks, requiring regular replacement.
• For feeding by tube that lasts up to 2 years, Dale could have Percutaneous Endoscopic Gastrostomy also known as a PEG feed. The feeding tube would be inserted under sedation, through the abdominal wall into his stomach. 
• The other option was for Dale to continue to have food, fluid and medication through his mouth. In this case he would remain at risk of the complications of aspiration pneumonia. 

Lauren arranged to meet with Dale and support him to be as involved as possible in this decision. He was lying in bed. To explain her role and the purpose of her visit, Lauren used simple language and pictures. Dale opened his eyes occasionally but was unable to communicate what he thought of these options. Lauren had no reason to doubt that he lacks capacity to consent to treatment.

Lauren took time to observe Dale on two occasions, sitting by his bed, using this approach to gain insight into his world.  She was able to gather information about his likes and dislikes and what was important to him from his supported living staff who continued to visit him daily.

There were conflicting opinions from professionals around what would be best for Dale. Two consultants were in favour of the PEG tube option. Other professionals were in favour of feeding by mouth with palliative care in place. It was felt by some that having a peg tube with dementia was ethically wrong.

Lauren attended two best interest meetings on behalf of Dale. At the first best interest meeting it was agreed that Dale should have his dementia assessed by a specialist who would feed into a second meeting.

In the meantime, Lauren researched feeding options for people with learning disabilities and dementia, discovering that people with advanced dementia are still at risk of aspirational pneumonia even with a peg feed.

Lauren found it difficult to weigh up the least restrictive option for Dale as both options had pros and cons, but she continued to research and represent Dale’s best interests.

At the second best interest meeting, the options were thoroughly discussed along with Dale’s quality of life, and what would be in his best interests. The dementia specialist nurse advised that she believed feeding by mouth with palliative care in place would be the best option. Lauren provided guidance about making best interest decisions.

Dale’s support staff said that Dale doesn’t engage as much as he used to in activities and with people. They reported it’s difficult to know if he enjoys activities now, but that Dale did enjoy his food and eating and always had a good appetite.

Taking the information into account that Lauren had provided, the meeting agreed that although a PEG tube might prolong Dale’s life this would not necessarily improve his quality of life. He would have a better quality of life if he continued to experience the pleasure and enjoyment of eating food. It was agreed that his support staff would be provided with appropriate support to ensure Dale’s needs are met. To ease symptoms and ensure he is comfortable, a prescription would be prescribed by the palliative care team. The community matron and Dale’s GP would be advised of Dale’s palliative care plan so they can provide support to him after hospital discharge.

The meeting took into account that Dale could pass away quite quickly after removing the NG tube. Lauren advocated that if he is going to pass away after a short time, then Dale needs to be at home, and asked if Dale could be discharged from hospital at the earliest opportunity. Lauren said it was important that he was at home surrounded by his belongings and the people and staff that he knows well. This was agreed to be in Dale’s best interest and the least restrictive option.

It was agreed that Dale should not be brought back into the hospital and that if an ambulance had to be called, the paramedic's role will be to make Dale comfortable so that Dale can pass away with dignity and respect in his own home amongst people he knows.

The research Lauren did enabled her to fully represent Dale during the best interest decision. It enabled her to weigh up what was the least restrictive option and in his best interests.