period of nutritional support of up to six weeks inpatients with internal pancreatic fistulae, provided thereis clinical evidence of improvement during this period.The addition of a somatostatin analogue to the totalparenteral nutrition regimen was shown to be costeffective. More recently we have tried pancreatic ductstenting in the management of such patients but patientnumbers are too small to evaluate this method oftreatment.

Short-bowel syndrome

Serious metabolic and nutritional abnormalities occur inpatients with more than 70% of their small bowelsurgically removed. The role of nutritional support inthe adaptive phases of the short-bowel syndrome is wellestablished. 40 patients with short-bowel syndromefollowing massive short-bowel resection mainly due tomesenteric artery occlusion, small bowel volvulus,adhesive intestinal obstruction and massive disembow­elment or abdominal gunshot injury were treated in ouralimentation unit. Prognosis was better in youngerpatients with an intact ileocaecal valve, no co-existing

Too little or too much?

SUSANNE WOOD

cardiac disease and a remaining small-bowel length of75cm±30cm (mean±SD). For socio-economic rea­sons, patients tend to be frequently re-admitted becauseof fluid and electrolyte abnormalities and protein-caloriemalnutrition. Home pareteral feeding is not a viableoption in our patient population.

Miscellaneous conditions

Patients with acute intestinal failure needing nutritionalsupport mainly on an out patient basis include thoseon chemotherapy for cancer and patients with HumanImmunodeficiency virus infections. The latter group ofpatients without surgical problems are treated inmedical wards. Treatment is mainly supportive, withenteral nutrition being the preferred method of nutri­tional repletion.

References

I. Haffejee A A. 0 J Du Plessis Lecture. Surgical Research ­Reflections and a vision. S Afr J Surgery 1998; 36: 10-16

Nutrition Nurse Specialist, Kingston Hospital- Kingston Upon Thames, Surrey, KT2 70B, Englande-ma,z" sruberry@aol.com

Learning objectives

By the end of the session the delegates will be able

• To understand the disabilities arising from intestinalfailure.

• To recognise the factors influencing patient views.• To appreciate the need for a clinical and ethical

framework to facilitate care and treatment planning.

Introduction

Intestinal failure can be devastating for the patient anddaunting for those caring for them. Short term intestinalfailure lasting up to approximately 10 d, is common,particularly following abdominal surgery and is usuallyfollowed by a return to oral feeding. While detailed careis needed in the management of all patients it is thosewith medium or long term, intestinal failure that posesthe greatest difficulties.

Sepsis, high intestinal losses via fistula or stomas,difficult wounds, fluid, electrolyte and nutrition imbal-

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ance, pain and psychological disturbance are commonfeatures. They arise from an underlying disease which init's self is likely to be complex, having resulted in the lossof a major organ function. In addition those patients forwhom return to adequate function cannot be envisagedmust face the practical, emotional and social implica­tions of artificial nutrition in the community

The focus of care

One of the purposes of health care is to increase qualityof life. When treating a condition which cannot be'cured', and where the patient is left with residualdisabilities this entails the relief of the physical,emotional and social consequences. Without attentionto logical care planning a regime of treatment can bedeveloped which is overwhelming for the patient andboth professional and informal carers.

Compromise is often required, the most effectivetreatment being that which is safe but acceptable to thepatient, rather than one that will achieve normal

nutrition and biochemistry while defeating the patient inthe process.

There is a balance between the benefits to be gainedfrom therapeutic interventions and the risks andburdens they impose on the individual. In intestinalfailure this balance needs regular, formal reassessmentparticularly when treatment is prolonged (1). Localmeasurements of quality of life, patients' experience oftherapy and cost effectiveness can be made to bench­mark against national and international data.

Assessment of benefit, risk and burden

Assessment is a sophisticated process built on knowl­edge of current research related to intestinal function,the underlying disease, pharmacology, clinical nutritionand the psychology of chronic illness. The politics oflocal health service organisation will influence thefinance and logistics of home artificial nutritionalsupport, which may impact on clinical management.Creating a plan of care requires the systematic applica­tion of this knowledge to evaluation of the patients'needs made by doctors, general and specialist nurses(nutritional, stoma care, pain management) phy­siotherapists, dietitians, pharmacists, social workersand members of other disciplines. Integrated carepathways and models of care specifically for homeparenteral nutrition have been suggested as planningaids (2). Central to the planning process are the wishesof the patient.

The patients wishes

Patient views are influenced by many factors includingprevious experience of illness and perception of theprogress and likely outcome of the current disease,observation of, or discussion with, other patients, painand other physical symptoms and the attitudes of healthcare professional looking after them.

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Professional attitudes to patients with intestinal fail­ure can be complex. The acutely sick patient, withgastro-intestinal fistula for example, needing arduousdaily care and making slow progress can result indemoralisation of both patient and staff. No one wishesto see a patient in their care suffering and the emotionaldiscomfort this engenders in professionals can increasethe difficulty of communication between each other andwith the patient.

Both patients and professionals are also influenced indecision making by legal requirements and culturalexpectations. An example is the wide difference in theuse of home parenteral nutrition in patients with cancerbetween the Netherlands and the United Kingdom (3).

Ethical dimensions extend to the level of nursingsupport provided to patients receiving home artificialsupport. Studies have indicated that after the closestfamily member it is the nurse with specialist knowledgeof home care who is the most significant source ofsupport (4).

Finding to correct balance between too little treat­ment and care and too much intervention requires asystematic approach to care planning, and regularreassessment. Most of all the wishes of the patient needto be understood and acted upon (5).

References

I. Baptista R J, Lahey M A, Bistran B R, Champagne C D. MillerD G, Kelley S E, Blackburn G L. Periodic reassessment forimproved. cost effective care in HPN: a case report. JPEN 1984; 8:708-710

2. Ireton-Jones C, Orr M, Hennessy K. Clinical pathways in homenutrition support. J Am Diet Assos 1997; 97: 1003-1007

3. Van Gossum A, Bakker H, Bozzetti F et al. Home parenteralnutrition in adults: a European multicentre survey in 1997. ClinNutr 1999; 18: 135-140

4. Heaphey L L. Survey results provide insight into psychosocialissues. Lifeline Letter of Olney Foundation Nov/Dec 1988

5. Wheatley C. Ensuring equity of access and quality of care;patients' perspectives and results of our national survey. OnlineMarch 2002