26 - Neurological and neuromuscular symptoms
Editors: Goldman, Ann; Hain, Richard; Liben, Stephen
Title: Oxford Textbook of Palliative Care for Children, 1st Edition
Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)
> Table of Contents > Section 3 - Symptom care > 24 - Feeding in palliative care
24
Feeding in palliative care
Angela Thompson
Anita MacDonald
Chris Holden
Introduction
Feeding in palliative care brings to mind issues relating to artificial nutrition/hydration in the terminal stages, and the ethical dilemmas associated with these challenges. Artificial feeding refers specifically to interventions that bypass the swallowing process, such as nasogastric and gastrostomy tubes, in addition to parenteral forms of nutrition. Whilst these issues are real and relevant, they are only one aspect of the range of nutritional care considerations required for children with a life-limiting condition, whose palliative care needs may extend over months or years. Offering food to a child is one of the most basic of parental instincts. Artificial nutrition, on the other hand, may at times impose burdens on the child that outweigh the possible benefits. Attention to good nutritional care, offered either orally or artificially, has the potential to improve quality of life for both family and child, and should be a priority within their assessments, reviews, and care planning.
A review of ACT/RCPCH 1997 Guide [1] reveals the broad spectrum of conditions that may necessitate provision of palliative care to a child. These range from underlying cancer and irreversible organ failures, through neuromuscular disorders and metabolic disorders to severe multiple disabilities. Some have short and swift terminal-carestages, while others deteriorate steadily over time. Prognostic uncertainty exists in some cases with unpredictable time scales, compounding decision-making and bringing up ethical considerations. With such a range of diagnoses and time scales, what are the common principles that influence the approach to nutritional support? This chapter aims to support decision-making for individuals, based on the available relevant evidence relating to paediatric nutritional support, considered alongside specific palliative care issues, to inform and support sound nutritional care decision-making at the various stages of individual palliative care journeys. It does not ignore the place of common sense , non-technological approaches to improving children's nutritional intake, but seeks to add these to support planning, as the non-assisted approaches become insufficient alone.
All children deserve that we acknowledge the relevance of attention to position [2] and seating, and provide them with encouragement, distraction, and extra snacks, as also with unhurried, small, frequent and colourful, temptingly presented and satisfying meals that are easy to swallow. Strongly aromatic foods should be avoided, especially when nausea and vomiting occur. Taste alteration associated, for example, with rapid cell turnover of the 10,000 taste discerning buds during chemotherapy, can be addressed by undertaking measures such as disguising metallic tastes with sharp or acidic flavours, like lemon juice, and salty tastes with sugar. When not contra-indicated, the use of calorie-dense additions to favourite meals by, for example, adding grated cheese to baked beans or mashed potato, lentils or cream to soups, and icecream to milk shakes provides family members with a way of feeling they are doing something positive to regain control of their child's care. It brings some normality to the child's situation, as does the use of carbohydrate-providing glucose polymers or nutritional supplements, and may do much to relieve tension, especially where artificial feeding brings more burdens than benefits.
P.375
Physical, psychological, and social influences upon feeding
Nutritional care decisions are affected not just by physical factors, but also by psycho-social influences. Societal attitudes to death have changed significantly, such that the death of a child is now often considered to be a medical failure within many societies [3]. Advances have increased the opportunity for technological support in nutritional care, compounding the dilemma at times when a means of nutritional intervention may appear to be available, but inappropriate. Consequently, decisions about whether interventions should be begun, and if so, for how long, and with what aims, as well as decisions about whether to withdraw, are required to be taken more frequently. This adds to the challenges of addressing changing nutritional requirements through the various stages of disease progression, for both families and staff.
Psychologically, strong forces influence attitudes towards nutritional care. A woman's maternal instinct is to nurture and feed her child, and this instinct is naturally strongest when the child is ill. This applies also to the mode of feeding; the desire to orally feed a child is a strongly emotive factor. This can influence both family and professionals to maintain attempts at oral feeding alone, beyond the stage when enteral feeding would have been of benefit to both child and exhausted family.
Whilst the evidence base supports artificial feeding, research suggests that the psychological factors affecting the decision to commence it may be replaced by a different set of psycho-social issues after it commences. Not all families find the move to artificial feeding a positive one [4, 5]. Complications in the procedure itself may occur, along with the possibility of rapid increase in weight gain, increase in the care burden on the family, and urgent needs for equipment provision and housing adaptations.
Poole [6] examined loss of weight and appetite as problems experienced by patients with advanced cancer, and their carers. She suggested that anorexia may be more distressing for the carer than the patient. Holden [7] found that preparation and serving of food was an expression of love and caring, underpinned by the knowledge that intake is necessary for survival'. This perception will be recognised as familiar by those who work with families having children with palliative care needs. Holden noted that the consumption of food acted as a barometer' of a patient's condition, where a reduction of intake was equated with deterioration. Carers were frustrated that they could not influence the patient to eat, and saw it as a source of conflict. This is in contrast to the findings of Justice [8], who describes the natural death, while not eating, as part of the Hindu culture in India. Here, acceptance that food intake will decline as death approaches reduces carer-patient conflict, as the patient prepares for a good , dignified death, with a reduced risk of incontinence. Hence, cultural and religious practices have an influence, and must be accommodated.
These attitudes will also influence decisions made for many children in the earlier stages of their palliative care needs, where prognosis may be months or years, or prognostic uncertainty may exist. The psychological factors influencing the carers' desire to build up the child will be strengthened by the desire to avoid physical effects, witnessed or anticipated. Evidence relating to sub-optimal nutrition has been gathered in respect to children with neurological impairment. Sullivan [9] confirmed that feeding problems in this group were severe and common, citing prolonged feeding times. 38% of the members of this group were underweight, 56% choked on food, 22% experienced vomiting, 59% were constipated, and 31% had suffered at least one chest infection over the last 6 months, while 20% of the parents described feeding as unpleasant. Despite this, 64% of the patients had never had their feeding or nutrition formally assessed.
Sub-optimal nutrition has been shown to have many health consequences. Russell [10] showed a decrease in muscle strength, predisposing to ineffective cough reflex and aspiration pneumonia [11]. Poor circulation time results in limbs developing cold, mottled peripheries [12], and disturbances of the immune system, predisposing to infections, especially of the urinary and respiratory tract, along with reduced healing of pressure sores. Stallings [13] considered that poor nutrition may be associated with irritability, and decreased motivation and energy available for non-essential activities such as play. Such effects are no longer considered inevitable and irremediable, but planned assessment is required to reduce their prevalence, and improve the quality of life of the child and family.
Case A 4-year-old-girl with a degenerative neurological condition was under regular multidisciplinary review. She developed a series of chest infections, during which she suffered associated weight loss and general deterioration. Her parents reported adequate nutritional intake. Referral was made for terminal-care support, but assessment revealed malnutrition, and a concern that malnutrition was the root cause of her rapid demise. Oral supplementation was replaced with nasogastric feeds, and she made an almost immediate and sustained improvement in energy levels, motivation, cognitive functioning, weight gain, skin condition, with reduction in severity and frequency of chest infections. She tolerated nasogastric (and subsequently, gastrostomy) feeds well, and the family's experiences with exhaustion over long pre-nasogastric feed periods ceased, reducing their stress and improving quality of life, replacing misery and distress with good-quality times in the later stages (years) of her disease progression.
P.376
When decisions have to be made
How can we best approach decision-making at different stages, from decisions to increase oral supplementation, through enteral/parenteral feeding, to issues of withholding or withdrawing artificial nutrition or hydration, for both families and professionals (see Chapter 4, Ethics, Larcher)?
No one professional group can support the nutritional care needs of a palliative care child. Support from a nutritional care team (including nutritionalists, nurses, paediatricians, dysphagia specialists, psychologists, etc), is essential [14], supplemented by access to information from those who know the child and family well. Many nutritional support teams are based in regional centres. As the number of children managed within the community with enteral/parenteral feeding is increasing rapidly, multidisciplinary forums are also developing within community settings, to support the delivery of care to children with life-limiting conditions. These work alongside the regional centre teams to ensure smoothly planned, timely transition of care between care settings, and to enable families' needs to be met locally. Since the number of professionals involved with any one family can be considerable, it is important that each has a key worker to coordinate and access care, and that the young people themselves are included in the decision-making, where appropriate.
Nutritional issues are rarely managed in isolation; their impact upon prognosis adds weight to the importance of including the young person in any decision-making.
Whilst decisions regarding nutritional intervention are required throughout the disease trajectory, decisions around the terminal phase involve challenging issues of artificial nutrition and hydration. A fierce debate has been held, primarily in the context of adult palliative care, on the subject of the need to withdraw or maintain hydration for comfort. Disadvantages of withdrawal may include thirst, dry mouth, nausea, postural hypotension, tachycardia, cognitive deficit, fever, constipation, and increased risk of tissue breakdown. However, symptomatic distress from oedema, respiratory secretions, urine output, etc, may occur when artificial hydration is continued in the terminal stage, as lower fluid volumes are required by terminal cancer patients than the average medical or surgical patient [15, 16].
These decisions are no less taxing in paediatrics. Two guiding principles remain, however.
Assessment and consequent planning needs to be made for each child on an individual basis.
No individual should make such decisions alone.
Statements exist from national bodies and ethical committees, to steer and underpin these decisions.
The National Council for Hospice and Specialist Palliative Care Services [17], produced a statement concerning assisted artificial hydration. It emphasises that decisions of this nature should involve a multi-professional team and family, although the senior doctor has ultimate responsibility for the decision. It states that:
A blanket policy regarding artificial hydration is ethically indefensible.
When near death, a person's desire for food and drink diminishes. Artificial hydration in the imminently dying patient influences neither survival nor symptom control, and as such, may constitute an intrusion.
Thirst or dry mouths may be caused by medication.
Appropriate palliative care will consider using artificial hydration where dehydration results from potentially correctable causes, such as diuretics, sedation, vomiting, diarrhoea, and hypercalcaemia.
The clinical team has responsibility for the decisions, which must be reviewed on a daily basis.
Relatives often express concerns about lack of nutrition or hydration. Professionals should not be subordinate to relatives' anxieties, but should strive to address them.
The Royal College of Paediatrics and Child Health [18] drew up a framework for practice in withholding and withdrawing life-sustaining treatment. It states that the role of assisted feeding by nasogastric tube or gastrostomy should be considered very carefully and discussed fully with the family'. It suggests that whilst it may be appropriate in a child with a progressive neuro-degenerative-disease-related swallowing disorder, it would rarely be introduced in a child with a rapidly progressive, disseminated malignancy. It also places emphasis upon the inclusion of competent children in the decision-making process.
The United Kingdom's General Medical Council (GMC) produced good practice guidelines in 2002 [19]. Key points were:
The benefits of artificial nutrition and hydration are different, and should be assessed separately.
Agreed trial periods may be appropriate, where the balance of benefit/burden is unclear.
Where death is imminent, it is not usually appropriate to start artificial nutrition or hydration, but artificial hydration by less invasive measures may provide symptom relief.
Where death is imminent, and artificial hydration and/or nutrition are already in use, it may be appropriate to withdraw them if the burdens appear to outweigh the benefits.
Where death is not imminent, it is usually appropriate to continue artificial nutrition and/or hydration. If the prognosis is poor, however, and it is felt that the artificial nutrition/hydration is causing suffering or an intolerable burden to the patient, it is best to seek independent consultation.
Where significant conflicts/dissent arise, or may arise, legal advice should be sought as to whether the courts should be applied to for a ruling.
P.377
The British Medical Association (BMA) in 1999 [20] made some statements of clarity:
Basic care should always be provided, including the offer of oral nutrition/hydration.
Artificial nutrition/hydration refers specifically to techniques to bypass the pathology in the swallowing process nasogastric tubes, gastrostomies, and total parenteral nutrition.
Artificial nutrition/hydration is regarded as a medical treatment, and as such, may be withdrawn in some circumstances.
Where nutrition and hydration are provided by ordinary means (cup, spoon or other method of delivering food or nutritional supplements into the patient's mouth) or moistening of a patient's mouth for comfort this forms part of basic care, and should not be withdrawn. It should be offered to, but not forced upon, the patient, so long as there are no significant risks of choking/aspiration of the food or fluid.
These points highlight the difficulties in paediatrics, where, for example, many of the children with neuro-degenerative disorders will already have artificial nutrition/hydration because of the high risk of aspiration, and withdrawal would not be followed by the option of oral nutrition/hydration. Hence, withdrawal may hold even greater significance and potentially ethical dilemmas than in adult oncology-based palliative care.
Managing the feeding of a child with palliative care needs
The management of a child with palliative care needs, therefore, begins at diagnosis, and includes input from a nutritional care team (where available), for assessment and nutritional planning according to anticipated energy and nutritional requirements. An approach of regular reassessment of nutritional intake according to need will enable an establishing of trust between the families and the professionals. This in turn paves the way for possible decision-making, including withholding/withdrawing artificial hydration/nutrition, as the family has witnessed decisions being made in the child's best interest throughout the course of the disease progression.
The role of a nutritional care team can be illustrated by considering a child with a malignant disease. Malnutrition is not a significant finding in the majority of children with malignant diseases at presentation. The effects of cancer and its treatment can, however, result in malnutrition [21]. All three modalities of chemotherapy, surgery and radiotherapy are known to have significant negative effects on nutritional status. Careful attention to nutritional status has been shown to reduce complications of, and delays in, treatment. Chemotherapy, which may have taken its toll even before palliative stages are reached, or continue within them, can cause nausea, vomiting, anorexia, changes in taste, mucositis, diarrhoea, constipation, and liver damage, while steroids may cause muscle wasting and worsening of protein malnutrition. Disease-specific associations need careful consideration children with brain tumours often have problems with swallowing when neurological deficits occur. The Cochrane review of post-BMT patients showed that reduced appetite, mucositis, and gastrointestinal failure often give rise to malnutrition, but that glutamine in association with parenteral nutrition may reduce the relative length of hospital stay and infection rates [22].
The nutritional assessment for an oncology patient contains the expected anthropometrics, biochemical indices, dietary intake details and clinical examination. Weight-for-height has been found to be one of the most useful parameters for assessment and monitoring of children with malignant diseases [21]. The history of weight change, treatment type, duration and intensity, and any infectious and surgical complications enables determination of the need for aggressive nutritional support. Careful nutritional assessment, using a battery of tests, thus has the aim of preventing the onset of malnutrition. Consequent potential benefits for families having children with palliative care needs are: the child's increased energy levels, decreased irritability, and greater motivation, and : a reduction in complications, resulting in an improved quality of life, within the knowledge that the child was supported in achieving his best nutritional status through active efforts to ensure access to appropriately intense, timely treatment.
Likewise, consideration of the underlying disease process will support nutrition management for children with non-malignant life-limiting illnesses. Those with neuro-muscular disorders may find small pieces of food moistened with sauces more manageable, and purees easier to swallow than liquids. Children with cardiac disease often develop hepatomegaly-related abdominal discomfort, nausea and vomiting, in relation to increased pressure on the stomach and compromised blood supply to the bowel. Frequent small-volume feeds may support, and a low-fat diet may ease stomach emptying and
P.378
nausea. Those with renal disease may find that uraemic nausea is reduced by a high-carbohydrate diet [23]. A review of symptoms in the last month of life revealed substantial suffering, with poor nutritional status contributing to fatigue, the most commonly reported significant symptom [24]. Gastro-intestinal problem-related symptoms of poor appetite (80%), nausea and vomiting (57%), constipation (53%), and diarrhoea (45%), were all felt to warrant symptom control to improve well-being in the terminal month.
Whilst anorexia and dehydration are frequently reported in children nearing death, Goldman [23] reports that they naturally become less interested in food, and may survive many weeks with little nutrition, without discomfort. In such cases, it is important to ensure that there is no contributory nausea, vomiting, depression, constipation or sore mouth. Since steroids can produce significant mood swings in children, and rapid onset of Cushingoid appearance, they are not recommended as appetite stimulants in children. A sore mouth is the main symptom of dehydration observed in children, and may be managed with moistening and good attention to mouth care, with regular checking for candida, and treatment with nystatin. Chemotherapy-related mouth ulcers are common, and may significantly affect nutritional intake. Relief can be afforded by benzydamine hydrochloride spray. Management of other symptoms affecting nutritional intake are addressed elsewhere, but it should be remembered that nausea and vomiting in children with palliative needs is relatively common, and that anti-emetics according to presumed cause, for example, cyclizine in raised intracranial pressure, should be prescribed. Likewise, prophylactic regular laxatives should be used for opiate related constipation, and loperamide may be required to control diarrhoea in HIV/Aids.
Children with palliative care needs therefore require sound nutritional assessment, with application of good practice in nutritional care to their individual circumstances. This has to take account of treatment, disease, complications, and anticipated energy needs, placed within the psycho-social context of the family.
What then is evident as good practice in nutritional care in children with chronic and serious illnesses, which can be applied to children with palliative care needs? What is known about nutritional requirements, modes of delivery, care planning, training and support? These issues need application to the individual child's care, and will be addressed here.
Nutritional assessment
The three main functions of nutritional assessment are:
to identify patients at risk of developing malnutrition;
to quantify risk of developing malnutrition-related complications;
to monitor adequacy of nutritional intervention.
There is no global gold standard for determining nutritional status, because, (1) there is no universally accepted definition of malnutrition; (2) all current accepted parameters are affected by illness and injury; (3) it is difficult to isolate the effect of malnutrition from the disease on clinical outcome, and, (4) it is not clear which of the commonly used assessment techniques is the most reliable, because of the paucity of comparative data [25]. The clinical assessment of nutritional status should involve a focused history of physical examination, in conjunction with selected laboratory tests aimed at detecting specific nutrient deficiencies, and identifying patients who are at high risk of developing future nutrient abnormalities. The nutritional assessment should also include a psychosocial history, feeding history (Table 24.1), medication review for potential drug-nutrient interactions, and evaluation of ability to chew, swallow, digest and absorb adequate nutrients to meet nutrient requirements. Serial weight and height (length) are usually the main anthropometric measurements, but the adequacy with which these are carried out, documented, and interpreted is far from optimal [27].
Table 24.1 Important information from a feeding history (adapted from Coad [26]) | ||
|---|---|---|
|
P.379
Nutritional requirements
In the United Kingdom, energy and nutrient requirements are detailed in the 1991 Department of Health document Dietary Reference Values for Food Energy and Nutrients for the United Kingdom' [28]. Dietary reference values (DRV's) are not just a single set of figures, but four sets of figures providing guidance on average needs, recommended intakes, minimum needs and safe levels of intake as appropriate for each nutrient. The reference nutrient intake (RNI) is the amount of a nutrient (EAR + 2 standard deviations), which is sufficient for almost all individuals (97.5%). By definition, it exceeds the requirement of most people, and habitual intakes above RNI are almost certainly adequate.
Requirements for energy and nutrients are thought to fulfill children's needs in proportion to the metabolically active tissue at various stages of development. The basal metabolic rate is the same for girls and boys until they enter puberty, when it increases more rapidly to meet the demands of their higher percentage of muscle mass. However, the RNIs do not cover additional needs, which arise from increased catabolism due to disease, malabsorption, or decreased utilisation from metabolic abnormalities, or the increased requirements necessary for catch-up growth to occur.
Energy requirements
To estimate an individual's true energy requirements, adjustments are necessary to account for special circumstances, such as activity levels, illnesses, and other factors. Individual requirements will vary widely, even for children of the same age and sex, who are afflicted with the same disease. For example, fever raises energy needs by 12% for each degree above 37 C. Illness, trauma, and recovery from malnutrition can almost double energy requirements. However, decreased growth and activity during severe illness can decrease energy needs considerably. Children with disabilities are likely to have lower energy needs than healthy children.
Therefore, individual energy requirements may only be determined on a trial and error basis, and regular monitoring of weight changes, growth and actual energy intake versus prescribed intake are important. Changes in clinical condition, such as increased seizure activity or infection, may affect requirements. Pragmatically, for infants and children who are underweight, it may be sensible to initially increase their usual energy intake by 20%, and evaluate the effect of this. For children with a low height or length-for-age, it may be better to calculate energy and nutrient intakes based on actual height-based age calculation, rather than chronological age. Children who have been chronically underweight may gain excessive weight when on tube feeds, sometimes to the point of obesity.
Protein requirements
This is a crucial determinant of linear growth, as it provides nitrogen and essential amino acid requirements for synthesis of body tissues. The protein-energy ratio is important, and normaly in infants, 7.5%-12% of the energy should be derived from protein, while at least 9% of energy for catch-up growth should be derived from protein.
Fluid requirements
In healthy children, fluid requirements vary from 150 ml/kg/day (0 3 month-old infants) to 50 ml/kg/day (teenagers). Water must be provided in sufficient quantities to replace fluid losses and allow for normal metabolism, although it is not known what the fluid requirements are in the terminal phase. Fluid requirements depend on many variables, including urine output, sweating, vomiting, fever, and stool output (constipation or diarrhoea). Constant drooling also contributes to fluid losses. Many children appear to require much less than the usual amount of fluids at the end of life. At these times, it is important to maintain comfort by maintaining good mouth care and hygiene with local measures. Excess fluids can lead to increased secretions and respiratory distress, frequent urination, and at times, even heart failure.
When to use tube feeding
Every effort should be made to optimise oral food intake before embarking on tube feeding. This may involve many measures, including change of posture, special seating, feeding equipment, oral desensitisation, food texture changes, thickening of liquids, increasing energy density of food, use of energy and nutritional supplements, and treatment of reflux or oesophagitis. However, tube feeding can play a role in both short-term rehabilitation and long-term nutritional management. The extent of its use ranges from supportive therapy, in which the enteral feed supplies a proportion of the needed nutrients, to primary therapy, in which the enteral feed delivers all of the necessary nutrients.
Some parents may find it difficult to consent to enteral feeding, and they need support and understanding. They may see artificial nutrition as a poor alternative to real food. It may arouse feelings of guilt, as the parents may feel that they have failed to provide nourishment to their child. However, most children receiving enteral feeds can continue to receive oral food and drink, and this should be actively encouraged so that they can enjoy the pleasurable and social aspects of eating.
Before initiation of enteral tube feeding, the child needs an assessment to: (1) ensure that there are no contra-indications for enteral feeding; (2) assess any possible gastro-intestinal
P.380
problems (e.g gastro-oesophageal reflux, risk of aspiration); (3) determine the optimal delivery site for the feeding (i.e. stomach, duodenum, or jejunum), and (4), determine an appropriate oralmotor stimulation programme.
Tube feeding should be considered when one or more of the following factors are identified:
unsafe swallowing and aspiration;
inability to consume at least 60% of energy needs by mouth;
total feeding time more than 4 hours per day;
unpleasant feeding;
weight loss or no weight gain for a period of 3 months (less for younger children and infants);
weight-for-height (or length) less than 2nd percentile for age and sex.
Choice of tube feed
Choosing the best formula for paediatric patients depends on several factors, including:
nutritional requirements
gastro-intestinal function
underlying disease
nutrient restrictions
age
feed characteristics (nutritional composition, addition of novel components, viscosity, osmolality, availability and cost). Standard, nutritionally complete polymeric formula can be divided into 3 groups, according to age or weight: (1) 0 1 year, (2) 1 6 years (8 20 kg), and, (3) 7 12 years (21 45 kg).
Children 0 1year. It has been traditional practice to tube feed term infants with normal gastro-intestinal function either breast milk or normal infant formula, during the first year of life. Energy supplements, in the form of glucose polymer and fat emulsion, were commonly added to increase energy density, but this has several disadvantages, including preparation errors, feed contamination, dilution of nutrient composition, and reduction of the protein: energy ratio. Another option is the use of high-energy, nutrient-dense infant formula, specially produced for infants who are failing to thrive. These provide approximately 1.0 kcal/ml, and are enriched with extra protein, vitamins and minerals. Initial evidence suggests that these formulas are well tolerated, and when compared with energy-supplemented normal infant formula, result in better growth in boys [30].
Children 1 6 years (8 20 kg). There is now a selection of standard, low-residue, nutritionally complete, ready-to use feeds, of 0.75, 1.0, and 1.5 kcal/ml, (with or without fibre, providing between 0.5 0.75 g fibre/100 kcal). They are all based on caseinates, maltodextrin, and vegetable oils, with or without added medium-chain triglyceride oil, and are clinically lactose-free, with a low osmolality. They are well tolerated and effective in improving nutritional status in this age group. Their long-term use also leads to a normal biochemical micronutrient profile[31]. Unfortunately, there is little data on fibre requirements in paediatrics, to help determine ideal feed composition. Initial data suggests that the high-fibre feeds are well tolerated, improve stool characteristics and reduce laxative usage. In a group of 20 developmentally disabled children, during a 2-month randomised crossover study, a high-fibre feed containing 10g/litre reduced use of laxatives, and had no abnormal effect on growth or biochemistry [32].
Children 6 12 years (21 45 kg). Standard nutritionally complete, 1.0 and 1.5 kcal polymeric feeds (with and without fibre) have recently been introduced for this age group. Their micronutrient composition is in between feeds designed for 1 6 years and adult feeds, but as yet, there is no published work demonstrating their efficacy and safety. However, feeds designed for younger ages or adult feeds are unsuitable. Feeds designed for 1 6 years are low in electrolytes, whereas adult formula contains excessive amounts of protein, electrolytes, vitamin, and trace minerals.
Energy density of whole protein feed
Whole protein tube-feeding formulae with varying energy densities are available. The choice of an appropriate energy density depends on energy requirements and tolerance. For children with cancer and cystic fibrosis, energy requirements may not be met by standard formula (1.0 kcal/ml), because of low infusion rates during initial days of feeding, feed interruptions due to medical procedures or illnesses, gastro-intestinal intolerance or sub-optimal prescribed volumes. In children with cancer, high-energy density formula (1.5 kcal/ml) has been shown to be more effective in improving nutritional status of children with cancer, during the intensive phase of treatment, than standard formula (1.0 kcal/ml)[33].
Route of feeding
The feeding tube is placed either nasally or surgically Table 24.2, and the choice of placement depends on many factors:
preference of the caregiver(s);
expected duration of the tube feeding;
community support for enteral feeding;
family's ability to learn the feeding technique;
child's safety;
development of normal feeding behaviour;
minimising trauma and discomfort.
P.381
Table 24.2 Route of feeding | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
|
Nasogastric feeding. The simplest and most obvious route for artificial enteral feeding. Selection of an appropriate size and type of nasogastric tube will depend on its material and the anticipated duration of feeding.
Types of tubes
For most children, the best method of enteral delivery is a fine bore nasogastric tube (FBT), generally made from soft polyurethane or silicone elastomer, with a diameter under 3mm. Polyurethane tubes are inserted using a guide wire, which is flexible enough to aid easy insertion and passage, avoids damage to the tube, and does not coil. This type of tube can be left in place for 4 6 weeks before needing to be changed.
A polyvinyl chloride tube may be considered if the child is likely to vomit frequently, as it is less likely to be vomited up. Unfortunately, this type of tube needs to be changed on a weekly basis, as it stiffens, over time, and is likely to cause more nasal irritation.
Techniques for insertion: Parents can be taught how to pass nasogastric tubes, but should not be pressurised into doing this. Information must be given by an experienced Nurse and Play Therapist, to decrease the anxiety of the parent and child and improve their ability to cope, by making the procedure understandable and less frightening.
Tips to maintaining integrity of tubes: Nasogastric tubes require flushing with 5 mls of cool, boiled or sterile water every 4h, to prevent occlusion of the tube and maintain the tube's integrity. A 50ml syringe must always be used (as per manufacturer's instruction) when flushing the tube, as smaller syringes create an increase in pressure, which can perforate the tube.
Gastrostomy feeding. Children who are likely to require feeding for more than 3 months should be considered for gastrostomy feeding. Percutaenous endoscopic gastrostomy (PEG), first reported by Gaurderer et al. [34] has become the preferred approach for children requiring prolonged tube-feeding support. Following the development of the gastrostomy button, skin-level gastrostomy devices are now frequently utilised when the PEG catheter is replaced. Although commonly used, it is not without mortality [35]. Complications include leakage at the site, tube displacement, stomal and gastro-intestinal infections and gastro-oesophageal reflux.
Children with poor gastric emptying and/or severe reflux or intractable vomiting are of particular concern. Such children have an increased risk of aspiration, and therefore, may be candidates for a simultaneous fundoplication.
Jejunostomy feeding. This can be achieved using naso-jejunal jejunostomy, or trans-pyloric jejunostomy, or trans-gastric jejunostomy placement. Jejunostomy feeding is rarely used in paediatrics, but may be indicated in children with persistent vomiting or severe delayed gastric emptying.
Feeding regimen
Feeds can be delivered by intermittent bolus feeds, continuous pump infusion, or a combination of the two (Table 24.3). Certain clinical situations dictate a specific regimen, but a
P.382
flexible approach to feeding should be taken wherever possible, and compromise is usually necessary. Priority should be given to the child's, parents' and siblings' quality of life, and the feeding regimen should be adapted to the family's routine and lifestyle as closely as possible. This enables the child to maintain his or her usual day-to-day activities. A regimen that keeps the parents up all night or demands that the parents spend all day feeding the child, is unlikely to be successful. In fact, in one small study (n = 10), all mothers described their prescribed feeding schedules as unrealistic and altered these to make them more compatible with their children's needs [37].
Table 24.3 Choosing a suitable feeding regimen (Adapted from Holden et al. [29]) | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
|
Bolus feeding. Bolus feedings are delivered three to eight times per day; each feeding lasting about 15 30 min. Bolus feeds do not interfere with the daily activity, are simple, and do not require a pump. They are more physiological than continuous feeds, and allow freedom of movement for the patient, so that the child is not tied to a feeding bag. They are usually well tolerated when digestive function is normal. Their disadvantages include increased risk of aspiration, in some children, they may cause bloating, cramping, nausea, and diarrhoea. It may not be practical to bolus-feed a child when the volume of formula is large, and demands that the child needs to be fed around the clock.
Continuous feeding. Continuous drip feeding may be delivered without interruption for an unlimited period of time each day. However, it is best to limit feeding to 18 h or less. Feeding around the clock is not recommended as this limits a child's mobility, and may elevate insulin levels contributing to hypoglycemia. Commonly, it is used for 8 10 h during the night, and smaller bolus feedings or oral feeding may be used during the day, so that there is no interference with daytime activities.
Children who are sensitive to volume, at high risk of aspiration, or children who have gastro-oesophageal reflux, may tolerate continuous feeds better. Continuous feeds also increase energy efficiency, allowing more calories to be used for growth. This can be important for severely malnourished children. In addition, stool output is reduced: an important consideration for children with chronic diarrhoea. However, continuous feeding may interfere with serum concentration of some drugs, or the drugs may even reduce the even nutrient composition, for example, vitamin C concentration of the feeds [37].
Teaching home enteral feeding
Ideally, experienced professionals, who discuss both the social and mechanical aspects of feeding, should, administer training. Training programmes should be individually tailored, and parents should receive verbal and written information. Importantly, families should talk to other parents about their experiences of caring for a child on home enteral feeds, so that they can gain insight about the effects of tube feeding on daily social life.
Psychological preparation of a child pre- and post-feeding is essential, and experienced play therapists provide invaluable support to children. Imaginative and interactive training aids should be used. Videos and computer training, as well as written and pictorial guides for feeding, are helpful for families.
Teaching programmes should include technical aspects, and risks and complications and their prevention. Parents should also receive verbal and written information about the social and emotional impact feeding may have [38]. Fathers and other relatives should be encouraged to learn how to give enteral feeds, to lessen the burden on the maternal carer.
P.383
Any special needs of the child and family should be identified, and arrangements made to fulfil these needs, prior to hospital discharge. Ongoing 24-hour telephone support is essential for these families, particularly for children on overnight continuous feeds.
Holden [39, 40] recommends that teaching sessions with the family or carer should be short, to minimise stress. Increasingly, pictorial teaching aids have been used to help non-English speaking parents and those unable to read and follow written guidelines [41, 42].
Teaching programmes should include:
reasons for home tube feeding;
safety aspects of care;
checking tube placement;
hygiene principles;
feed preparation;
use of feeding equipment;
psychosocial implications of feeding for the child and family;
problem-solving advice, and what to do in an emergency;
encouragement of oral stimulation during feeding;
telephone contacts of hospital and community staff;
how to obtain equipment, for example, via home delivery company, or from the community.
Home enteral feeding support and monitoring
Ongoing monitoring of children receiving home enteral feeding is essential, in order to assess the child's response to treatment, re-evaluate aims, ensure the feeding regimen and route are appropriate, and reduce the risk of complications which may lead to unnecessary hospital admissions. Regular monitoring of nutritional intake, growth, and biochemistry is essential. Enteral feeds are formulated to be nutritionally complete, but biochemical nutritional adequacy should be checked in children receiving long-term tube feeding. Annual or more frequent estimations of analysis of serum albumin, electrolytes, and haemoglobin are useful, as are as assessments of mineral and trace element status. These are particularly important in children with high requirements or malabsorption (e.g. children with cystic fibrosis).
Townsley and Robinson [43, 44] have highlighted many weaknesses in home enteral nutritional support. Problems include lack of co-ordinated health care, with no single person carrying out a specific remit for home feeding, lack of enteral feeding knowledge and training amongst community staff, funding confusion, inadequate family training, and families, unsure who to contact in the community, returning to specialist units for support. There may also be poor co-ordination, co-operation and communication between hospital and community settings, which can only disadvantage children and their families.
Problems and complications with home enteral nutrition
Holden [45] has identified that the practical, social, and emotional impact of tube feeding is often overlooked or grossly under-estimated by health and social care professionals. Families regularly experience sleep disturbance due to enuresis, diarrhoea, anxiety, and changes to overnight feeding equipment and other feed related problems. In the British Artificial Nutrition Survey [46], 25% of families said they received no practical help, in terms of domestic/laundry services. 25% said they received no help regarding respite facilities for their child. When a child was on a nasogastric feed, people stopped and stared when passing by, and so, parents were concerned about their child's physical appearance with a tube. Some avoided feeding outside in public places. They also commented that when their child eventually had a gastrostomy, they were happier due to the fact nobody needed to know. Many parents with children on long-term tube feeds may not seek professional health advice, preferring to devise their own strategies and solutions.
When families are asked about enteral feeding, their concerns include: finding a caretaker to tube feed their child; public ignorance about tube feeding; planning their social life around feeding schedules, and sadness over depriving a child of the pleasure of eating. Some parents find passing of a nasogastric tube distressing.
Common clinical complications associated with tube feeding include vomiting and aspiration; rapid feed delivery, gastro-oesophageal reflux, and tube displacement into the oesophagus are possible causes [47]. Diarrhoea, possibly due to high feed osmolarity or feed contamination, may cause dehydration, hypernatraemia, and hypoglycaemia.
Parenteral nutrition
Patients who are terminally ill with a severe immunodeficiency or malignancy may be considered for home parenteral nutrition. This is an invasive therapy with inherent risks, and is rarely required in palliative care. In 1998, of the 64 patients registered with the British Association for Enteral and Parenteral Nutrition (BAPEN), only one child was registered
P.384
with a malignancy [48]. Ethical issues should be carefully thought through before embarking on treatment of such patients.
Parenteral nutrition needs careful supervision from a multi-disciplinary regional centre that has a member available 24 h a day, to give advice and support. Catheter related sepsis is one of the most common complications, and parents are taught about signs and symptoms, and closely monitor their child's temperature. Adjunctive nutritional support either enterally or parenterally, supports the patient during therapy with surgery, chemotherapy, or radiation. Many studies have now shown that a nutritionally replete patient tolerates therapy better, and in some paediatric malignancies, this may enhance survival.
Comfort eating
The social and psychological bonds maintained through mealtimes are very important to parents, and it is important that artificially fed children are still encouraged to enjoy the taste and feel of food, if this can be done safely [43, 44]. Even if it is unsafe for a child to eat, it still should be possible to at least offer some form of oral stimulation, that is, by offering dummies to decrease hypersensitivity in the mouth. Advantages of oral stimulation include: bringing pleasure to the child through different tastes, fulfilling parental need to nurture, maintaining oral hygiene, preventing children from feeling excluded at mealtimes, promoting skill in managing secretions, and improving quality of life.
Conclusion
Children with palliative care needs present changing challenges in nutritional care as their disease progresses. Regular nutritional assessment, taking account of the psycho-social needs of the family, the child's underlying condition, the stage of progression, and treatment and associated complications as well as anticipated energy and nutritional requirements, should be undertaken. Where available, a nutritional care team, in conjunction with the child's specialist team, the family, the child (where appropriate), and the primary care and local palliative care teams, will be involved at various stages. The central aim is to support good quality life in the child's palliative care stages, and hence, the balance of benefit/burden of any planned intervention should be carefully assessed for each child and family within their unique situation.
Addressing feeding issues in palliative care, therefore, begins at an early stage, from diagnosis, through progression, to terminal care stages. It returns to families a means of some control within their child's devastating situation. The consequent building of trust that the child's nutritional needs are being managed appropriately, so affording the child with the best chance of a good quality life, can do much to improve the child's and family's ability to manage the trauma of the palliative care situation. It should be considered by staff as a high priority, at the heart of palliative care at all stages of care planning, to make practical solutions, determined by whether the goal is aggressive support or comfort and enjoyment of life, available to the family. It carries a tangible message to the child and family, which underpins the approach to their care, that their individual and unique life, and its quality, is valued and respected. It provides hope, and demonstrates that all those involved in their care are working together, despite many and changing challenges, to enable the child and family to live the best quality of life possible within their circumstances, acknowledging that the child is recognized and respected as having a lot of living to do .
References
1. ACT/RCPCH. Guide to the Development of Palliative Care Services, Section 1.2, 1997.
2. Larnert, G. and Ekberg, O. Positioning improves the oral and pharyngeal swallowing function in children with cerebral palsy. Acta Paediatr 1995;84(6):689 92.
3. Evans, P.R. The management of fatal illness in childhood Proceedings of the Royal Society of Medicine 1969;62:549 50.
4. Darwish, H. Living with cerebral palsy and tube feeding: easier to feed but at what cost? J Paediatr 1999;135:272 3.
5. Day. A.S., Beasley. S.W., Meads. H., and Abbot. G. Morbidity associated with gastrostomy placement in children demands an ongoing integrated approach to care. N Zea Med J 2001;164 7.
6. Poole, K. and Froggat, K. Loss of weight and loss of appetite in advanced cancer: A problem for the patient, carer or health professional? Palliat Med 2002;16:499 506.
7. Holden, C.M. Anorexia in the terminally ill cancer patient: The emotional impact on the patient and the family. Hosp J 1991;7:73 84.
8. Justice, C. The natural death whilst not eating; a type of palliative care in Banares, India. J Pall Care 1995;11:38 42.
9. Sullivan, P.B., Lambert, B. Rose, M., Ford-Adams M., and Griffiths, P. Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study Dev Med Child Neur 2000;42:674 80.
10. Russell, D.M., Leiter, L.A., Whitwell, J. Marliss, E.B., and Jeejeebhoy K.N. Skeletal Muscle function during hypocaloric diets and fasting: A comparison with standard nutritional assessment parameters. Am J Clin Nutrit 1983;37:133 8.
11. Efthimiou, J., Fleming, J., and Spiro, S.G. The effect of supplementary oral nutrition in poorly nourished patients with chronic pulmonary disease. Am Rev Resp Dis 1998;137:1075 82.
P.385
12. Patrick, J., Boland, M., Stoski, D., and Murray, G.E. Rapid correction of wasting in children with cerebral palsy. Dev Med Child Neurol 1986:28;734 9.
13. Stallings, V.A., Charney, E.B., Davies J.C., and Cronk, C.E. Nutrition related growth failure in children with quadriplegic cerebral plasy. Dev Med Child Neurol 1993;35:126 38.
14. Puntis, J.W.L. Establishing a nutritional support team. In Baillieres Clinical Paediatrics. Bailliere Tindall, 1997;5(2):177 187.
15. Steiner, N. and Bruera, E. Methods of hydration in palliative care patients. J Pall Care 1998; 14:2,6 13.
16. Fainsinger, R.L. and Bruera, E. When to treat dehydration in a terminally ill patient? Support Cancer Care 1997;5(3):205 11.
17. National Council for Hospice and Palliative Care Services/Ethics Committee of the Association for Palliative Medicine of Great Britain and Ireland. Joint Working Party. Ethics and Nutrition/Hydration, 2002.
18. Royal College of Paediatrics and Child Health. Withholding and withdrawing life sustaining treatment in children. A framework for practice, 1997.
19. General Medical Council. Withholding and Withdrawing Life-prolonging treatments: good practise in decision making. London, 2002.
20. British Medical Association. Withholding and withdrawing life-prolonging medical treatment. Guidance for decision making. BMJ, London, 1999.
21. Sheard, N. and Clarke, N. Nutritional management of paediatric oncology patients. In S.B. Baker, A.D. Baker, ed. Paediatric Enteral Nutrition, London: Hoddor Arnold, 1994; p. 387 97.
22. Murray, S.M. and Pindora, S. Nutrition support for bone marrow transplant patients. Cochrane database Syst Rev. 2002(2): CD002920.
23. Goldman, A. Life Threatening illnesses and symptom control in children. In D. Doyle, G. Hanks, N. Macdonald, ed. Palliative Medicine, 2nd Edition, 1998; p. 1033 43. Oxford: Oxford University Press.
24. Woolfe. J., Grier. H., Klar. N. et al. Symptoms and Suffering at the end of life in children. N Eng J Med 2000, 342 (5): 326 333.
25. Klein, S., Alpers, D.H., Grand, R.J., Levin, M.S., Lin, H.C., Mansbach, C.M., Burant, C., Reeds, P., and Rombeau, J.L. Advances in nutrition and gastroenterology: Summary of the 1997 A.S.P.E.N. Research Workshop. JPEN J Parenter Enteral Nutr. Jan-Feb 1998; 22(1):3 13.
26. Coad, J. and Moloney, B. Nutritional assessment of children's nutritional state during illness. In C. Holden and A. MacDonald Nutrition and Child Health. London: Bailliere Tindall, 2000, p. 251 264.
27. Bunting, J. and Weaver L.T. Anthropometry in a children's hospital: A study of staff knowledge, use and quality of equipment. J Human Nutr Diet 1997;10:17 23.
28. Department of Health. Dietary Reference Values for Food Energy and Nutrients for the United Kingdom. Report on Health and Social Subjects No 41, London: HMSO 1991.
29. Holden, C., Johnson, T., and Caney, D. Nutritional Support for children in the community. In C. Holden, A. MacDonald, eds. Nutrition and Child Health. London: Bailliere Tindall, p. 176 184.
30. Clark, S. MacDonald, A., and Booth, I.W. (1998) Abstract: Improved growth and nitrogen deficiency in infants receiving an energy-supplemented standard infant formula. Proceedings of the 2nd Annual Spring Meeting, Royal College of Paediatrics and Child Health 1998, p. 75.
31. Walsh, 1994.
32. Tolia, V., Ventimiglia, J., and Kuhns, L. Gastrointestinal intolerance of a pediatric fiber formula in developmentally disabled children. JAm Coll Nutr 1997;16:224 28.
33. den Broeder, E., Lippens, R.J., vant Hof, M.A., Tolboom, J.J., Sengers, R.C., van den Berg, A.M., van Houdt, N.B., Hofman, Z., and van Staveren, W.A. Nasogastric tube feeding in children with cancer:The effect of two different formulas on weight, body composition, and serum protein concentrations. JPEN 2000; 24:351 60.
34. Gauderer, M.W., Ponsky, J.L., and Izant, R.J. Jr. Gastrostomy without laparotomy: A percutaneous endoscopic technique. J Pediatr Surg 1980;15:72 5.
35. Kastner, T., Criscione T., and Walsh, K. The role of tube feeding in the mortality of profoundly disabled people with severe mental retardation. Arch Pediatr Adolesc Med 1994 May;148:537 8.
36. Spalding, K. and McKeever, P. Mothers' experiences caring for children with disabilities who require a gastrostomy tube. J Pediatr Nurs 1998;13:234 43.
37. Gorman, S.R., Armstrong G., Allen, K.R., Ellis, J., and Puntis J.W. Scarcity in the midst of plenty: Enteral tube feeding complicated by scurvy. J Pediatr Gastroenterol Nutr 2002;35:93 5.
38. Chaplen, C. Parents views of caring for children with gastrostomies. British Journal of Nursing 1997;6(1):34 8.
39. Holden, C.E. and Macdonald, A. Nutrition support at home: Emotional support and composition of feeds. Current Paediatrics 1997: 218 22.
40. Holden, C.E., Sexton, E., and Paul, L. Enteral nutrition for children. Nurs Stand 1997;11(32):49 56.
41. Shah, R. Practice with attitude: Questions in cultural awareness training. Child Health 1994;1:245 9.
42. Sexton, E., Paul, L., and Holden, C.E. A pictorial assisted teaching tool for families. Paediatr Nurs 1996;8:24 6.
43. Townsley, R. and Robinson, C. Comfort eating. Nurs Times 1997; 93:1997.
44. Townsley, R. and Robinson, C. Online support: Effective support services to disabled children who are tube fed. The Norah Fry Research Centre, Bristol, 1997b.
45. Holden, C. Implications for families: enteral and parenteral feeding. MSc University of Wolverhampton, 1994 (unpublished).
46. Bans, 2002.
47. Colomb, V. Home artificial nutritional support in gastrointestinal disease. Curr Opin Clin Nutr Metab Care 1998;1:395 9.
48. Elia, M., Russel, C., and Stratton, R. Trends in artificial nutrition support in the UK during 1996 2000.A report of the British Artificial Nutrition Survey (BANS), Maidenhead, Berks, 2001.
49. Cook, P. Family support in the community. Chapter 13; 177 187 in Supporting Sick Children and Their Families 1999. London: Bailliere Tindall.
50. Cronk, C., Crocker, A. C., Peusche, l. S. M. et al. Growth charts for children with Down's syndrome: 1 month to 18 years of age. Paediatrics 1998;81:102.
51. Hill S., and Long, S. Home enteral and parenteral nutrition for children. In J. Nigtingalr ed. Intestinal failure. Greenwich Medical Media: London, p. 438 446.
P.386
52. Johnson, T.E., Janes S.J., MacDonald, A., Elia M., and Booth, I.W. An observational study to evaluate micronutrient status during enteral feeding. Arch Dis Child 2002;86:411 5.
53. Kirk, J. Growth and nutritional assessment of children. In C. Holden, A. MacDonald eds. Nutrition and Child Health. Bailliere Tindall, London 2000; p. 161 176
54. Knowles, M.R. Diabetes and cystic fibrosis. New questions emerging from increased longevity. Journal of Paediatr 1988; 112:415 16.
55. Maynard, L., Barclay, S., Palmer, R., Todd, C., and Vickers, D. Families in need the needs of families caring for children with life-threatening illnesses in Cambridge Health District. Cambridge Lifespan Healthcare NHS Trust, 1996.
56. Nardella, M. Early nutrition intervention with Williams syndrome and hypercalcaemia. Nutrtio focus 1996;11:1 8.
57. Wolley, H, Stein, A., Forest, G.C., and Baum, J. D. Imparting the diagnosis of life-threat illnesses in children. BMJ 1989;298:1623 26.
EAN: 2147483647
Pages: 47
- ERP Systems Impact on Organizations
- The Effects of an Enterprise Resource Planning System (ERP) Implementation on Job Characteristics – A Study using the Hackman and Oldham Job Characteristics Model
- Intrinsic and Contextual Data Quality: The Effect of Media and Personal Involvement
- Relevance and Micro-Relevance for the Professional as Determinants of IT-Diffusion and IT-Use in Healthcare
- Development of Interactive Web Sites to Enhance Police/Community Relations