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The needs of patients requiring home enteral tube feeding

Christine A. Russell, SRD.

Head of Nutrition, Nutricia Clinical Care, Trowbridge, Wiltshire

The prevalence of home enteral tube feeding (HETF) in the UK has grown dramatically over the past decade. In 1990, the Parenteral and Enteral Nutrition Group of the British Dietetic Association estimated the number of patients receiving HETF to be in the order of 1000, which increased to approximately 6000 by 1995.

The prevalence of home enteral tube feeding (HETF) in the UK has grown dramatically over the past decade. In 1990, the Parenteral and Enteral Nutrition Group of the British Dietetic Association estimated the number of patients receiving HETF to be in the order of 1000, which increased to approximately 6000 by 1995.

In 1996, the British Artificial Nutrition Survey (BANS) was established by the British Association for Parenteral and Enteral Nutrition (BAPEN). The overall aim of BANS is to audit and review the provision of artificial nutrition support in both hospital and the community in order to improve the quality of patient care and meet a number of local and national requirements. BANS has now gathered sufficient information to allow analysis of trends in enteral tube feeding (ETF) and parenteral nutrition (PN). It is considered to be the largest ongoing survey of its kind worldwide.

At the end of 2000, it was estimated that there were around 20 000 patients receiving HETF in the UK, of whom approximately 15 000 were adults. This paper will draw on information from the latest BANS report (Elia et al, 2001a) to describe the profile of adults receiving HETF and highlight some of the issues facing nurses, other health-care professionals and carers with respect to patient selection, discharge planning and ongoing care.

Prevalence and growth of HETF
The annual growth of HETF during the past five years exceeded 20%, but recently the number of new patients starting HETF per reporting centre has shown signs of slowing down (Figure 1).

It is often assumed that most enteral tube feeding takes place in hospitals. Data obtained from the questionnaires completed by the reporting centres contributing information to BANS, however, showed that, at the end of 2000, there were three times as many patients receiving enteral tube feeding in the community as those in hospital. HETF now accounts for an increasing proportion of the total artificial nutrition support provided throughout the UK and has become one of the fastest growing areas of the home-care industry.

Patient profile
Information gathered by BANS between 1996 and 2000 has shown that the age distribution of adults receiving HETF shifted towards the older age range. At the end of 2000 over 50% of patients were more than 70 years of age, the most common age band being 71-80 years (Elia et al, 2001a).

Each year patients with disorders of the central nervous system have accounted for about 60% of patients receiving HETF, with cerebrovascular accident being the most common primary diagnosis in 32-35% of patients. Not surprisingly, problems with swallowing were the main reasons for starting HETF in over 70% of all patients (Elia et al, 2001a).

The second most common diagnosis was gastrointestinal (GI) disease, including malignancy of the GI tract. About 12% of adults receiving HETF at the end of 2000 had oesophageal/oropharyngeal cancer. The impact of cancer has become progressively more significant during the past five years and accounted for one in four patients who were discharged on HETF in 2000 (Elia et al, 2001a).

The majority of patients starting HETF are fed via a gastrostomy tube (85%) and relatively few patients (14%) are able to return to full oral feeding after 12 months (Elia et al, 2001a).

While most adults requiring HETF are discharged back into their own homes to be cared for by a family member, almost 40% receive their care in a nursing home and over 90% of all patients receiving ETF in nursing homes have a gastrostomy tube in place (Elia et al, 2001a).

Activity levels of patients progressively fall with age. Approximately 25% of patients over the age of 75 years have limited activity and 67% are housebound and bed-bound. The ability to manage also diminishes with age, with almost 60% of all patients receiving HETF at the end of 2000 requiring total help (Figure 2).

In summary, adult patients discharged into the community on HETF during 2000 were older, generally more disabled and required more help and support than those starting HETF in 1996.

Nurse involvement
Nutritional support is usually begun in a hospital setting and so hospital nurses may be involved in the selection of patients for HETF and in discharge planning and training of patients and carers. A nutrition nurse specialist may carry out this role although, currently, only about 38% of UK hospitals have a nutrition support team and only 73% of these employ such a nurse (Elia et al, 2001a). Burnham and Barton (2001) recommend that multiprofessional nutrition support teams are best placed to optimise patient care and minimise the risk of complications in patients on artificial nutrition.

Community nurses and nurses working in nursing homes may be involved in the long-term management of patients receiving HETF, which raises resource and training issues that must be addressed. Increasingly, nurses employed by enteral feeding companies play a role in the training of patients and carers and in long-term follow-up. The wide variety of staff involved makes it imperative that nurses work to agreed standards and that there are clearly defined lines of communication and responsibility. Although HETF is often initiated by a hospital nutrition support team, this team may not have the resources to offer a follow-up service in the community. Scott et al (2001) have shown that regular follow-up after percutaneous endoscopic gastrostomy (PEG) insertion by a multidisciplinary nutrition team has significant benefits for the quality and cost of patient care.

Patient selection
HETF is considered to be a medical treatment, and as such it may be withheld or withdrawn if the burdens outweigh the benefits. However, decision-making can be fraught with difficulty. Hughes and Bowling (2001) have shown that, in most hospitals, tube insertion (PEG) is undertaken by gastroenterologists who act as technicians only. In 25% of cases the gastroenterologist does not know the outcome of any patient assessment and 71% have no mechanism for review of patients afterwards. Key staff may thus be unaware of poor patient outcome and clearly this is a clinical governance issue.

The BANS data show that 2% of stroke patients receiving HETF are unconscious and this raises ethical, financial and quality-of-life issues that need to be recognised and aired by the multiprofessional team. Generally, the level of dependency among stroke patients receiving HETF was higher than with any other diagnosis (Elia et al, 2001b). Indeed, 43.9% of the patients were bed-bound and a further 30.3% were housebound. This suggests that quality of life may be poor in these vulnerable people and this should be taken into consideration in the decision-making process. Dementia is another controversial indication for HETF as there is little evidence that the quality or length of life is improved. However, Scheider et al (2000) have reported improved quality of life after starting HETF in a mixed group of patients. Further research is needed.

Informed consent
Some 85% of patients on HETF are fed via a gastrostomy tube and this figure rises to 92% among stroke patients (Elia et al, 2001b). When patients are offered gastrostomy tubes with a view to discharge on HETF, it is important that patients' relatives or carers have an accurate expectation of HETF so that consent is as informed as possible. This may include a discussion about life expectancy while on tube feeding and also the chance of swallowing being regained. Overall mortality at one year after starting HETF is higher among adults (34%) than children (6%) (Elia et al, 2001a). Mortality varies according to disease category and sometimes with age.

Nurses must advocate for patients by ensuring good practice in obtaining consent. Nurse managers will be involved in the implementation of Department of Health guidance (2001) on consent to examination or treatment. This will be particularly helpful in protecting those adult patients who are unable to provide consent for themselves.

Identification of carers
Henwood (1998) has shown that, in Britain, one in eight people is a carer. Half of the respondents to a Carer's National Association survey had not been told that they were carers. Neither were they informed about how to make contact with carer support groups, which can be a great source of information, advice and mutual support (Box 1).

Training
In 2000 only 10% of BANS reporters felt that sufficient time was always allocated to patient/ carer training before discharge (Elia et al, 2001a). Furthermore, not every patient had their home environment assessed before or soon after discharge on this complex home therapy. This constitutes a clinical risk and nurses need to be sure that patients being discharged on HETF are either competent in their new skills or will be supported by professionals in continuing to learn once home. The nature of any home assessment should be documented, as should the patient/carer training.

The ability of the patient or carer to acquire new skills will be influenced by, for example, pain, weakness, medication, stress, visual acuity, manual dexterity, environment and age. Training should reflect these factors and it should not be rushed.

Written guidance
Enteral tube feeding is invasive, artificial and is associated with increased risks of infection (Anderton, 1995). Patients receiving HETF may be immunosuppressed because of the underlying disease, extremes of age, malnutrition or drug therapy. Yet the BANS data reveal that one in 20 patients receives no written information about hygienic techniques. Nurses caring for people receiving HETF have a responsibility to work with dietetic and other colleagues to ensure that such materials and nurse contact details are available.

Follow-up
Follow-up may take place in the community, in multiprofessional clinics or endoscopy units, dependent on local resources and patient dependency. The BANS data reveal that 12% of patients on HETF have no arrangements for follow-up made before their discharge and 13% do not have regular follow-up for their nutrition therapy.

Elia et al (2001c) suggests that lack of follow-up at home increases the burden on carers. Peristomal infections are a relatively common feature of patients with gastrostomy tubes. It is important that these are dealt with quickly, effectively and sympathetically. There is clearly a role for nurses in the management of these chronic wounds.

Follow-up should not be the sole responsibility of the dietitian. Among patients with dysphagia regular assessment by a speech and language therapist is important in order to establish whether oral diet and fluids could safely be reintroduced. A multiprofessional PEG clinic has been shown to be an effective and efficient means of providing follow-up to people receiving HETF (Biddle et al, 2001)

Finally, 29% of BANS reporters said that they kept no records of patients discharged on HETF (Elia et al, 2001a). Clearly this has legal implications for the trusts involved. Without detailed records people on HETF and the care they may (or may not) receive are invisible to health professionals, managers and health planners. There is no place for this situation in a modern, dependable health service.

Conclusion
Nurses involved in caring for patients requiring HETF are faced with a challenge. Only by increasing their knowledge, strengthening teamwork and improving communication will this challenge be met.

BANS report
Copies of the latest BANS report are available for purchase at a price of £10 (UK) and £13 (overseas) from:

BAPEN Office, Secure Hold Business Park, Studley Road, Redditch, Worcestershire B98 7LG.

Anderton, A. (1995) Reducing bacterial contamination in enteral tube feeds. British Journal of Nursing 4: 7, 368-376.

Biddle, C., Charles, D., Gibson, F., Williams, R. (2001)A multidisciplinary approach to PEG clinics. Complete Nutrition 1: 6, 29-31.

Burnham, R., Barton, S. (2001)The role of a nutrition support team. In: Payne-James, J., Grimble, G., Silk, D. (eds). Artificial Nutritional Support in Clinical Practice (2nd edn). London: Greenwich Medical Media.

Department of Health. (2001)Reference Guide to Consent for Examination or Treatment. London: The Stationery Office.

Elia, M., Russell, C.A., Stratton, R.J. (2001a)Trends in Artificial Nutrition Support in the UK During 1996-2000. Redditch: BAPEN.

Elia, M., Stratton, R.J., Holden, C. (2001b)Home enteral tube feeding following cerebrovascular accident. Clinical Nutrition 20: 1, 27-30.

Elia, M., Stratton, R.J., Holden, C. et al. (2001c)Home artificial nutritional support: the value of the British artificial nutrition survey. Clinical Nutrition 20: (suppl 1), 61-66.

Henwood, M. (1998)Ignored and Invisible? Carers' experience of the NHS. London: Carers' National Association.

Hughes, A.J., Bowling, T.E. (2001)Is the Current Service for the Insertion of Endoscopic Feeding Tubes Appropriate and Acceptable? A UK survey (Abstract C28 of the BAPEN Annual Meeting, 2001). Available at: www.nutsoc.org.uk

Scheider, S.M., Pouget, I., Staccini, P. et al. (2000)Quality of life in long-term home enteral nutrition. Clinical Nutrition 19: 23-28.

Scott, H.F., Smedley, F., Timmis, L. et al. (2001)Prospective Randomised Controlled Single-blind Trial of the Effects of Multidisciplinary Nutrition Team Follow-up for 12 Months after Percutaneous Endoscopic Gastrostomy Insertion (Abstract C65 of the BAPEN Annual Meeting, 2001). Available at: www.nutsoc.org.uk.

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