Difficulties with Percutaneous Endoscopic Gastrostomy (PEG): a Practical Guide for The

Difficulties with Percutaneous Endoscopic Gastrostomy (PEG): a Practical Guide for the Endoscopist

Seamus O’Mahony Consultant Gastroenterologist Cork University Hospital Wilton Cork

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Tel 00353214922378 Fax 00353214346494 Abstract

Percutaneous Endoscopic Gastrostomy (PEG) is a widely-used and effective means of providing long-term nutrition in patients with inadequate oral intake. Demand for this intervention has risen steadily since the early 1990s. Endoscopists who perform PEG insertion have become increasingly concerned about inappropriate use of this intervention. This review addresses particular areas of difficulty, namely, dementia, stroke, aspiration pneumonia and use of PEG to facilitate discharge from hospital. Strategies for improving patient selection are described, and a practical approach to difficult decisions is outlined.

Key words: Percutaneous endoscopic gastrostomy dementia aspiration pneumonia enteral nutrition

Conflict of interest: None Introduction

Percutaneous Endoscopic Gastrostomy (PEG) is an effective means of providing long-term nutrition in patients with inadequate oral intake. The commonest indications for PEG insertion are dysphagia following stroke, chronic neurodegenerative conditions and head and neck tumours. Decisions relating to PEG tube insertion are amongst the commonest ethical dilemmas faced by gastroenterologists and endoscopists. Although PEG feeding can and does benefit many patients, there is growing evidence that for some patients, PEG insertion is futile and dangerous. When PEG feeding first became widely used in the early 1990s, endoscopists functioned primarily as technicians, acting on the instruction of colleagues in other disciplines. Concerns regarding PEG insertion were raised by the 2004 UK National Confidential Enquiry into Patient Outcome and Death (NCEPOD)1 report, which found that nearly a fifth of PEG insertions were “futile”. Endoscopists began to harbour concerns regarding the appropriateness of PEG insertion in some patients, for example, those with advanced dementia. Increasingly, long-term care facilities were making PEG insertion a condition for admission. Over the past decade, endoscopists have become more involved in the decision-making process on PEG insertion, and the majority of UK hospitals now have a multi-disciplinary nutrition team, to enable better decision-making in this complex and emotionally-charged area. Detailed guidelines on PEG insertion have been produced by the British Society of Gastroenterology (BSG)2, and a thoughtful document on ethical and practical problems surrounding nutritional care has been published by the Royal College of Physicians3.

Controversies regarding appropriate use of PEG

Dementia

There is now widespread consensus that PEG feeding does not benefit patients with advanced dementia4. There is no survival benefit, and nutritional status does not improve. The patient is also exposed to risks such as aspiration pneumonia, infection, leakage and diarrhoea. Insertion of a PEG tube limits a patient’s mobility and distorts their body image. A review by Hoffer5 on nutrition in dementia pointed out that after an initial period of weight loss, patients with advanced dementia reach a stage of physiological homeostasis, with a low metabolic rate, minimal physical activity and low caloric requirements. He made the sensible suggestion of weighing the patient regularly: if the patient’s weight remains stable, their caloric intake is adequate for their needs. Nevertheless, there may be occasional situations where a patient with advanced dementia may benefit from PEG feeding, and every case should be assessed on its own merits.

Stroke

Some early studies in the 1990s suggested that early (within a week) PEG feeding following stroke improved outcome6. The FOOD trial however, found no such benefit7. This was a large, multi-centre randomized controlled trial which assessed the benefit of tube feeding in stroke. Early feeding (via naso-gastric tube or PEG) was associated with a modest reduction in mortality, but “at the expense of increasing the proportion surviving with poor outcome”. More significantly, PEG feeding, compared to naso-gastric feeding, was associated with an increased risk of death or poor outcome. PEG feeding, therefore should be reserved for those stroke patients who have persisting dysphagia at 2-3 weeks after the stroke. In the early weeks, naso- gastric tube feeding is appropriate for stroke patients with dysphagia.

Aspiration pneumonia

This is the most difficult and controversial indication for PEG. Aspiration is commonly believed to be caused by laryngopharyngeal aspiration – food “going down the wrong way”. Video-flouroscopic studies are thought to predict the risk of aspiration pneumonia, although there is little evidence that this is the case. Hallenbeck8 has eloquently summarized the problem: “It is worth noting that videoflouroscopy was never developed as a predictive test for aspiration pneumonia; it was developed for the purpose of assisting speech therapists in training patients in new ways of swallowing. Apparently, it works well for this purpose. Clinicians who perform videoflouroscopy found patients with evidence of food “going down the wrong way” and felt they had to do something.” PEG offers no significant protection against aspiration pneumonia: indeed, aspiration pneumonia is the commonest cause of death in PEG-fed patients. How could this be? There are a number of possible explanations: (1) PEG feeding does not prevent aspiration of colonized oral secretions; (2) Scintigraphic studies have shown evidence of aspiration of gastric contents in PEG-fed patients9; (3) “Aspiration” pneumonia in frail hospital in-patients may be multi-factorial in origin, “a sign of often unrecognized global physiological decline”8. Contributing factors include a compromised immune system, suppressed cough reflex, and poor respiratory muscle function. None of these problems is corrected by PEG insertion. The belief, therefore, that bypassing the oropharynx will abolish aspiration pneumonia is largely incorrect. Increasingly, however, hospital in- patients are labelled as having “unsafe swallow”, and declared “nil by mouth”. This labelling inevitably increases the pressure for PEG insertion. The Report of the Royal College of Physicians/BSG Working party concluded: “Coughing and spluttering are not necessarily an indication for “Nil by Mouth”….”Nil by Mouth” should be a last resort, not the initial default option.”3

Economic/discharge issues

There is a growing concern in the US and the UK that PEG insertion is driven by non- clinical factors. In the US, a third of patients in long-term care are PEG-fed10: remuneration from insurance companies and government agencies is significantly greater for PEG feeding compared to hand-feeding. PEG-feeding is less labour- intensive than hand-feeding. The recent report3 of a Working Party commissioned by the Royal College of Physicians and the British Society of Gastroenterology drew attention to the “growing problem” of care homes refusing to take patients unless a PEG tube is placed.

Strategies for improving patient selection

The Nutrition Team

In their 2004 report, NCEPOD recommended that all patients referred for PEG should be assessed by a multi-disciplinary team, and that there was need for more comprehensive national guidelines for patient selection1. The BSG published detailed guidelines in 20102, and a more reflective document on “Oral feeding difficulties and dilemmas”, the report of the Royal College of Physicians/BSG working party was also published in 20103. Nutrition Teams have become commonplace in UK hospitals, but are still a rarity in Ireland. These teams have a varying membership, but would generally consist of a gastroenterologist, a specialist nurse, a dietitian and a speech and language therapist. All patients referred for PEG should be assessed by the nutrition team. There is some evidence that complications relating to tube feeding are less common in hospitals with Nutrition Teams11. Specialist PEG nurses provide on- going care for patients discharged home or to long-term care, and tube-related problems can be dealt with in the community without admitting the patient to hospital. The specialist nurse acts as a liaison with the patient’s family, and provides counselling, advice and general support (services which the gastroenterologist may not be able to provide). Difficult decisions are better addressed by a Multidisciplinary Team rather than by an individual endoscopist.

The “Cooling-Off” Period

This is a widely-employed approach: having seen and assessed the patient, the Nutrition team leaves a gap of at least a week before scheduling PEG insertion12. This allows the patient and their family to reflect on the many issues relating to PEG insertion. During this period, some patients (or their surrogate decision-makers) may change their mind and decline PEG insertion. The Cooling-Off period also allows the patient’s clinical condition to stabilize: NCEPOD cautioned against PEG insertion in patients who have active sepsis, or other causes of instability, such as heart failure. In the NCEPOD report, of those patients who died within 30 days of PEG insertion, 43% died within the first week: a 7-day waiting policy for PEG would allow the sickest patients to succumb without the added insult of PEG insertion.

Education and the PEG Referral Form

A well-designed PEG referral form not only streamlines patient selection, but also informs and educates other healthcare staff on appropriate use of PEG feeding. There is some evidence that education of healthcare staff regarding appropriate use of PEG improves patient selection and reduces mortality: a “multi-faceted quality intervention” – ie, assessment of patients by a specialist nurse/nutrition team, introduction of a referral form and formal education of staff appears to be the most effective approach13.

Interaction with relatives/surrogate decision makers

Many patients referred for PEG insertion may not be competent to make an informed decision, and consent will be obtained from family members or other surrogate decision-makers. There is good evidence from around the world that the decision- making process is frequently unsatisfactory, with relatives “often compelled to make decisions about long-term enteral feeding under tragic circumstances and with incomplete information”14. This process is more effective if the family members have one main contact person, ideally a specialist nurse. The “cooling-off” period allows time for relatives to reflect and ask further questions. Difficulties can arise when other health-care workers, such as speech and language therapists, dietitians, nurses and referring physicians inform relatives that a decision to proceed with PEG insertion has been taken before the patient has been assessed by the specialist nurse or nutrition team. If the patient is not suitable for PEG, then unceratinty and conflict can arise. Education of healthcare workers should lessen this difficulty over time. There is some evidence that relatives may have unrealistic expectations of the benefits of PEG feeding15, and one of the roles of the specialist nurse/nutrition team is to foster a realistic attitude to this intervention. Occasionally, there may arise an irreconcilable difference of opinion, typically in patients with advanced dementia. Compared to gastroenterologists, other physicians may have a more optimistic view of PEG feeding in patients with advanced dementia16, and this along with institutional pressure dictated by the need to transfer the patient to a long- term care facility may increase the pressure for PEG insertion. Relatives understandably worry about the risk of starvation. Careful explanation of the metabolic status and nutritional requirements in dementia as well as poor outcome following PEG insertion may resolve this conflict, but occasionally this proves impossible. My own practice in this scenario is to elicit the opinion of another gastroenterologist, and to seek the views of the referring physician. In exceptional circumstances the hospital ethics forum may need to examine the case.

Issues relating to nutrition and feeding may elicit complex emotional responses in relatives, and their concerns need to be carefully listened to and addressed. Feeding is a powerful symbol of caring for both relatives and health workers. Paradoxically, there is evidence that many relatives requesting a PEG would decline a PEG for themselves17; there is some evidence that this applies also to health-care staff16,18.

Conclusion

PEG feeding is useful for many, but not all, patients with feeding difficulties. Assessment by a multidisciplinary team improves patient selection, and support from a nurse specialist is invaluable. A “cooling off” period of one week following the decision to proceed with PEG gives patients and relatives the opportunity to reflect, and may eliminate those very ill patients who will not benefit from PEG. A referral form based on the BSG guidelines should be used, and regular education of medical, nursing and other health-care staff improves patient selection and outcome. The hopes and fears of patients and relatives need to be addressed with sensitivity and tact. References

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