Jim Woods enjoys his independence. He also enjoys the occasional Scotch and Coke. The problem is, he has cerebral palsy and fears that when he next goes into hospital, he will be "pegged" - that is, given a tube-feeding device that could affect his ability to eat or drink again in the conventional way.
Peg feeding has increased in the NHS in recent years. It is seen as a safe and time-efficient way of ensuring that people who have difficulty swallowing receive the nourishment they need.
But there is growing unease in the social care world that the practice is being used too readily and that individual wishes and rights are being overridden.
"It has got to the stage now where you try not to leave people alone in hospital," says Carol Wade, manager of Shinewater Court, the residential centre in Eastbourne, Sussex, where 59-year-old Woods lives. "You feel you have to protect them."
The issue of artificial feeding is in the spotlight because of the case brought last week in the appeal court by the General Medical Council, which sought to overturn a ruling rendering unlawful its guidance to doctors on withholding and withdrawing life-prolonging treatment. That ruling was made in the case of Leslie Burke, who has a progressive degenerative disease and is concerned that he might be denied food and water were he to become unable to communicate.
Worries about over-eager use of peg feeding might therefore seem paradoxical, but there are common underlying issues about communication, respect for the individual, and the heavy responsibility borne by health professionals.
There is an issue, too, about the age-old clash between the medical and social models of disability.
Peg feeding uses a percutaneous endoscopic gastrostomy procedure that involves the insertion of a flexible feeding tube through the abdominal wall, direct into the stomach. It is considered far preferable to a nasal tube, which tends to fall out and is unsightly. Recent advances in the technology have made pegging a relatively simple, non-surgical procedure with few side-effects and problems. This may be a factor in its increased use.
What happens typically in hospital is that nursing staff will report that a patient has difficulty swallowing, a speech therapist will make an assessment and, if pegging is recommended, a doctor will make a decision after discussion with the patient (if possible), their family or advocate.
Although nobody denies that peg use has risen, reliable figures are scarce. In 2002-03 there were more than 6,500 "finished admission episodes" involving a peg in NHS hospitals in England.
The Disabilities Trust, which runs Shinewater Court, is among social care providers voicing concerns. One of the charity's residents, with advanced multiple sclerosis, was adamant that he wanted to continue eating and drinking orally, for which he required total assistance, but was allegedly told by hospital staff that he had no such option. Another, a young woman who ate and drank normally when staying with the trust on placement, and relished a full roast dinner, was peg-fed as soon as she returned to her family home.
Woods, who has speech difficulties, says he dreads going into hospital in case he is pegged without consent. "When I'm there the staff don't always explain things or listen to what I am saying."
Mark Hodgins, 36, a fellow resident of Shinewater Court who also has cerebral palsy, shares such fears. He cannot talk and uses a word board to convey his wishes. Having a peg would take away a lot of his daily social activities, Hodgins indicates, not least going to the pub or out for a meal.
According to centre manager Wade, pegs are being used in many instances for the convenience of nursing staff. It can take up to 90 minutes to help residents such as Woods and Hodgins to enjoy a meal - time that hard-pressed hospital workers may not feel they can spare.
Swallowing difficulties and choking risks are real concerns, she acknowledges. But nursing staff unfamiliar with a disabled person's needs often try to help them to eat or drink while they are lying in bed rather than sitting up in a chair.
"And once you are pegged, you are 'nil by mouth', so you are not going to recover your swallowing reflex then," Wade says.
The Disabilities Trust is aiming to provoke a wider debate. It accepts that pegging can be beneficial - indeed, it points to one of its residents who chose happily to keep a peg when he came out of hospital, to supplement his oral intake of food and drink - but it argues that greater scrutiny is needed.
"What we hope to achieve is no more than an understanding of the issues and a preparedness to look at the practices that are going on at the moment," says James Rye, the trust's external affairs director.
Perhaps surprisingly, Dr Alastair Forbes agrees. He chairs the British Association for Parenteral and Enteral Nutrition, which brings together clinical specialists in this area. "It is an appropriate concern," he says. "I think they are absolutely right to highlight it as an issue. But at the same time, there is quite a considerable under-use of peg feeding for certain groups. It's a question of getting the balance right."
Much depends on time available to nursing staff, Forbes confirms. "On the whole, the doctor will ask the nurses, 'How can we feed this patient?' If the nurses say, 'We tried today and we got nowhere', then the tube is put in."
The main point may be that health professionals have grown much more conscious of nutrition issues. And pegging does give them confidence that the patient is getting nourishment.
"There is good evidence that if patients can't swallow, if they are fed then they recover more quickly," says Lady Ilora Finlay, a leading authority on palliative medicine.
"The difficulty is, when they have recovered, at what point do you take [the peg] out? That's a decision that I think probably is not taken easily. It's there, it's convenient and it's ready for the next time."
Useful links
British Association for Parenteral and Enteral Nutrition
