Article Text

Download PDFPDF

Artificial nutrition and hydration for children and young people towards end of life: consensus guidelines across four specialist paediatric palliative care centres
  1. Anna-Karenia Anderson1,
  2. Kimberley Burke1,
  3. Lizzie Bendle2,
  4. Michelle Koh3,
  5. Renee McCulloch4 and
  6. Maggie Breen1
  1. 1 Paediatrics, Royal Marsden Hospital, Sutton, UK
  2. 2 Paediatric Palliative Medicine, Evelina London Children's Hospital, London, UK
  3. 3 Paediatrics, Southampton University Hospitals NHS Trust, Southampton, UK
  4. 4 Paediatric Palliative Medicine, Gt Ormond St Hospital, London, UK
  1. Correspondence to Dr Anna-Karenia Anderson, Paediatrics, Royal Marsden Hospital, Sutton SM25PT, UK; annakarenia.anderson{at}nhs.net

Abstract

There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase.

  • artificial nutrition
  • hydration
  • end of life care
  • palliative care
  • children
  • young people

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Key messages

Key statement

  • Current practice relating to artificial nutrition and hydration (ANH) treatment in children towards the end of life varies considerably.

What is already known about the topic

  • There is limited literature on the use of ANH in children and young people and no published guidance on the topic.

What this paper adds

  • This paper provides a starting point by providing consensus guidance on ANH for children and young people at end of life.

Implications for practice

  • This paper provides a framework for health professionals in addressing ANH at end of life.

Introduction

In the final stages of illness, as disease progresses, if a child is no longer able to eat and drink orally or tolerate their usual enteral feeding regimen, healthcare professionals and families may consider artificial nutrition and hydration (ANH). ANH may offer some patients comfort and symptom relief, and potentially address concerns about perceived thirst.1 2 However, it can also lead to unwanted complications, such as fluid retention, respiratory compromise, and abdominal discomfort and distension, in addition to risks associated with medical intervention, such as placement of nasogastric tube (NGT) and the requirement for infusion devices.3–6 Current practice relating to ANH treatment in children towards the end of life varies considerably and there is no standard approach.7 8

Four specialist paediatric palliative care centres collaborated to develop ANH clinical guidelines for children nearing the end of life and set out a practical approach to aid healthcare teams in clinical decision-making. The guidelines are applicable to any child or young person under 18 years of age across all care settings who may be entering their last few weeks of life to which ANH may be considered. These guidelines may provide basis for any clinician involved in providing care to children towards end of life to support clinical decision-making, offer practical guidance and work towards providing a consistent standard of care for all children nearing end of life.

Concepts

ANH can be given via NGT, nasojejunal tube (NJT), and percutaneous endoscopic gastrostomy, intravenously or subcutaneously.9 It may not improve dry mouth or thirst; therefore, continued regular oral hygiene is recommended in the final days of life. Artificial fluids (and feeds) that have been started previously should be reviewed. Clinical decision-making about the benefit and burden of continued feeding should be based on tolerance to the feed and comfort of the child. If the feed or fluid is causing discomfort, reduction or revisiting the route of delivery should be considered prior to a decision about its discontinuation.

In practice the use of non-enteral hydration at the end of life is rare, but can be provided through drip-delivered or machine-delivered infusion either subcutaneously or intravenously (via a central venous access device), maintaining hydration at the end of life for a limited period. These are invasive medical procedures, and consideration must be given to the overall benefit, burden of delivery, monitoring and maintenance of such procedures, and how these can impact on the child and the family’s preferred place of care.

Comfort or ‘taster’ feeds refer to the goals of feeding, which include when to stop feeding, emphasising that the patient will be fed so long as it is not distressing.10 The feedings are comfort-oriented in that they are the least invasive and potentially the most satisfying way of attempting to maintain nutrition. In children towards the end of life, comfort feeds can be administered through an individualised oral feeding plan, where the main goals are enjoyment of small amounts of food or drink, and where hunger may often be ameliorated but may not provide optimal nutritional benefit. Despite there being a level of risk for aspiration, children and professionals may tolerate a higher risk burden to allow the child some feed enjoyment in line with their disease progression.

The legal framework

The provision or lack of ANH is a controversial area of clinical practice that is surrounded by ethical,11 legal, emotional, cultural and social factors.4 In law, provision of oral nutrition and hydration is part of basic care; however, ANH is considered a medical treatment.12 It is therefore regarded in the same way as other medical interventions, which can be withheld or withdrawn when continued provision is considered ‘futile’ or not in the best interests of the child.12 13 The legal perspective relating to ANH is mainly derived from adult case law13; however, the law and principles are also applicable to paediatric patients.5 The Royal College of Paediatrics and Child Health and the General Medical Council advise that any potential benefit of ANH must be weighed against the possible burden that could affect quality of life, and can only be withheld or withdrawn in circumstances when it is no longer in the child’s best interest.14 15 In the dying phase, a child may not be able to continue to take or tolerate fluid and nutrition as previously. The decision to introduce alternative fluids or nutrition may not provide clinical benefit or may not be tolerated, hence potentially causing harm. Therefore, if ANH is not appropriate, a child should always be offered regular, effective mouth care and symptom control to ensure the child is comfortable.7 14

Parents and professional perspectives

The withholding or withdrawal of nutrition and hydration can raise ethical dilemmas and concerns for both parents and healthcare professionals. For parents, their instinct is to nurture their child, and providing adequate food and fluid is part of their caregiver role.3 4 16 Moreover, parents are concerned about the suffering of their child and the way they would die if they choose to forgo ANH.16 The provision of ANH may provide parents reassurance that their child did not die from perceived starvation and/or dehydration.17 For professionals, decisions around the provision of ANH have been reported as one of the most challenging aspects of providing end-of-life care in both the neonatal18 and the paediatric19 setting. Up to 45% of healthcare professionals state that ANH should always be provided,6 and the withdrawal of feeding has been ranked as the fifth most difficult issue in caring for children at the end of life.19 Forgoing ANH has been found to be less acceptable to healthcare professionals than withholding or withdrawal of other life-sustaining treatments, such as mechanical ventilation.20

Collaborative decision-making

Current clinical opinion does not suggest that fluid administration prolongs the dying process or lengthens survival.8 21 Therefore, the multidisciplinary team (MDT), when assessing the benefits and burden of ANH for an individual child, should consider their legal duty,22 whereby a child’s welfare is paramount and parental responsibility exists, but also their duty of care to the child, where their best interests are upheld. Indeed the introduction and maintenance of ANH may affect the place of care for a child, particularly in community settings. Part of the decision-making process should recognise the resources needed to deliver ANH and the limitations it can cause. The MDT can use the ANH management algorithm (figure 1) to support professional decision-making. A second opinion from another centre may on occasion be sought to introduce, forgo or withdraw ANH. Parents and the child, if able, should be part of the decision-making process, with their concerns heard and their defined goals (eg, being at home) taken into account. The burden of introduction and maintenance of ANH should be fully understood in the holistic context of the individual child.

Figure 1

Professional decision-making algorithm for artificial nutrition and hydration (ANH) management. AH, Critical Appraisal Skills Programme.

Methods

Four clinical specialist paediatric palliative care centres in England collaborated to develop ANH clinical guidelines. The guidelines were developed using a three-step process: (1) literature and relevant guideline review, (2) draft guideline produced through collaborative consultation, and (3) external review.

Step 1: literature review

An initial literature search (databases: Cochrane Library, Medline, Cumulative Index to Nursing and Allied Health Literature, NHS Evidence, and National Institute for Health and Care Excellence (NICE)) of all articles between 2000 and 2016 was undertaken using the following keywords: dehydration, child*, paediatric, pediatric, subcutaneous, enteral, hypodermoclysis intravenous, rehydration, palliative, dying, end of life, bowel obstruction, nasogastric tube/feeding/hydration. No studies were found on the impact or effectiveness of medically assisted nutrition and hydration on survival or quality of life in children at end-of-life care. The 2017 NICE guideline ‘End of Life Care for Infants, Children and Young People’16 concurs with the lack of published evidence. Therefore, a wider literature search on studies exploring any aspect of medically assisted nutrition and hydration was carried out using the same keywords.

Step 2: draft guideline

A professional consensus meeting was held consisting of a consultant in paediatric palliative medicine from each centre, three paediatric specialist registrars from one centre, and six clinical nurse specialists in paediatric palliative care from three of the four centres. Two centres are based in a children’s specialist hospital, one in a specialist paediatric oncology centre and one in a large university National Health Service (NHS) hospital with paediatric tertiary services; all services are situated across London and the South West. The meeting was held at one of the centres.

During the consensus meeting, the extracted literature and existing adult guidance on ANH were reviewed.23 The qualitative studies were evaluated using the Critical Appraisal Skills Programme (CASP) checklist.24 Neither the adult guidance nor the extracted literature provided meaningful practical guidance on the delivery of ANH in children and young people. The adult guidance provided some topic headings to consider in developing the paediatric guidance. An initial draft guideline was developed through discussion and agreement from all attendees. An adapted Grading of Recommendations Assessment, Development and Evaluation (GRADE) of evidence was then applied.25 26 GRADE is a system of rating the quality of evidence and grading the strength of recommendations of systemic reviews and clinical practice guidelines.27 The GRADE process begins with asking an explicit question, and after the evidence is collected and summarised GRADE provides explicit criteria for rating the quality of evidence.25 The recommendations are characterised as strong or weak according to the quality of the supporting evidence. The grading was carried out independently by three consensus meeting members (two consultants and one clinical nurse specialist from two different centres), reaching consensus on the ratings given for each piece of evidence included.

The draft ANH guidance along with GRADE evaluation was sent to all lead consultants and clinical nurse specialists at each centre for further consideration and comments, and consensus was achieved prior to external review. All aspects of the guidance required agreement from the lead consultants of all four centres.

Step 3: external review

The agreed draft guideline was sent for external review to two specialist paediatric oncology dietitians with an interest in paediatric palliative care, two children’s community nurses, each with more than 5 years of experience in their role, and a bereaved parents group with ANH experience with their own children. The dietitians provided expert guidance on volume delivery and feed type. The children’s community nurses considered the applicability and practical implementation of the guidance particularly in community settings. The bereaved parent group provided support to service developments, including patient/parent information, research projects, guidelines and audits for the specialist paediatric palliative care service at one centre. Advice from both the parent and nursing groups consisted of improving clarity and readability of the guidance for the target user, deliverability of the guidance in all care settings, and addressing the needs of the intended population. The ANH guideline (figure 1) and algorithm (figure 2) were presented and discussed at one bereaved parents group with eight parents (two fathers and six mothers). Comments from all three external groups were then collated and shared with the four involved centres. A telephone conference consisting of all four consultant leads for the ANH project to consider the external review comments was held before a final ANH guideline was agreed. The three main contentious issues among the centres were around the inclusion of very rarely used subcutaneous fluids guidance, start volumes for enteral feeds, and the potential for a different approach between a child who was already artificially fed and another orally feeding at the end-of-life phase. The inclusion of subcutaneous fluids provides health professionals guidance for administration, and agreement to include this was based on concern for lack of availability of current standard guidance. The volume of enteral feeds was reduced from the initial recommendation of the dietitians to reflect the experience of clinicians in minimising harm (eg, abdominal bloating and discomfort) on introduction of enteral feeding in a potentially compromised gut. The final agreed guideline achieved complete consensus across the four centres. Furthermore, the guidelines have been approved for use at one NHS Trust specialist centre after submission through the Trust’s guidelines committee, and are currently published for use on the Trust’s intranet.

Figure 2

Enteral feeding plan at end-of-life care in community setting for over 1 year of age. NGT, nasogastric tube.

Results

Step 1: literature results

There were two qualitative studies found in the literature search. In the first study, the withdrawal of ANH occurred in 5.5% of all deaths over a 4-year period in a neonatal intensive care unit in Canada.27 The type of ANH was not specified. Parents were sent a questionnaire about their experiences a minimum of 1 year after the death of their child. Ten parents completed the questionnaire which was combined with a case note review. A median number of two discussions (range 1–4) occurred between families and professionals before ANH was withdrawn. Many of the families describe difficulties in decision-making in addition to worries that their child would experience pain. One parent stated the decision was ‘right but difficult’. Parents describe feeling well supported by professionals and believe their child received good symptom management and end-of-life care.

In the second study,28 six families (six mothers and five fathers) of children aged 1 month–15 years were interviewed up to 5 years from the death of their child. The ANH type included NGT and total parenteral nutrition. Parents in the study report that feeding difficulties (such as vomiting and pain) contributed to their child’s suffering, and the impact this had on the quality of life was a contributing factor in the decision to forgo ANH. No parents reported their child experienced additional suffering as a result of withdrawal/withholding of ANH, and many parents believe their child’s comfort improved once it was stopped. Parental responses showed doubts and mixed emotions about their decision to not continue with ANH; nevertheless, they did not regret their decision and believe their child’s death was peaceful and comfortable.

Both studies demonstrate that decision-making around ANH is extremely difficult for parents.27 28 Central to their decisions was a need to ensure their child was comfortable and did not suffer. Parents experience a range of difficult emotions, including guilt, doubt and uncertainty, and expressed the need for good communication and reassurance from professionals to support them throughout their journey. Both papers were assessed by the CASP qualitative checklist independently by two clinical nurse specialists from two separate centres.24 The papers provided very limited evidence base to draw on to make recommendations, particularly in the absence of comparative studies exploring the views of parents who choose to continue with ANH. Neither paper provided practical guidance around the approach to delivering ANH in children. Further research is needed to improve our understanding, knowledge and practice.

Steps 2 and 3: guideline development for practical approach to ANH for children at end of life

It was recognised that both the literature review and the adult guidance provided very limited practical guidance for ANH for children towards the end of life. Most of the final guidance developed was a consensus agreement based on expert opinion (table 1) across the four specialist paediatric palliative care centres and external reviewers.

Table 1

Summary of level of evidence used in the guidance

The ANH guidance: recommendations for practice

  • If ANH is being considered, a trial (with a timeframe) should be discussed between members of the MDT, the child (as able) and their parents.8 Refer to the dietitian for feeding plan to maintain basic metabolic well-being and/or ‘comfort feeds’ (adapted GRADE of evidence: very low).

  • The benefit versus the risk of oral ‘comfort feeds’, for example, risk of choking versus ANH, should be explained to parents. Comfort feeding with very small amounts of taster food may be one approach taken by parents and professionals alike. Open and transparent discussion should be an ongoing adaptive process (adapted GRADE of evidence: low).

  • The MDT should demonstrate a ‘unified’ team to the parents in offering support and reassurance in decision-making. Preparation and effective communication by the MDT and between team members and parents are essential. Documentation of discussions between at least two professionals and those with parental responsibility is vital.8 (adapted GRADE of evidence: low).

  • ‘Specialist services and professional organisations should consider running and evaluating programmes of education, training, guidance and audit about how to discuss and decide with patients and families how to manage hydration towards the end of life’15 29 (adapted GRADE of evidence: very low).

  • Parental concern about perceived discomfort or distress in their child should be addressed as part of the end-of-life care symptom management plan (adapted GRADE of evidence: low). Pain rating tools, for example, the revised Face, Legs, Activity, Cry, Consolability (FLACC) observational pain tool, Faces pain scale, and Numerical Rating scale,30 are validated to assess acute pain; however, they are not validated as a discomfort scale for ANH.

  • There should be close monitoring and regular review of decision-making for initiating or withholding ANH since for some children with uncertain disease trajectories there may be several potential end-of-life episodes from which they recover31 (adapted GRADE of evidence: very low).

An algorithm (figure 1) was devised by the three nurses leading the project and was then reviewed and modified by all involved centres to guide professionals in the decision-making process on the role of ANH management.

Indications for initiating ANH towards end of life

  • Neurological impairment leading to inability to feed orally and/or risk of aspiration.

  • Malabsorption due to intestinal disease, gastrointestinal failure or short gut syndrome.

  • To relieve symptoms of hunger or thirst in children unable to maintain sufficient intake due to a progressive, life-limiting condition in the final stages of illness.

Overall symptoms should be considered within the context of the child’s clinical condition, particularly those children who, due to cognitive impairment or inability to verbalise, may show signs or symptoms of hunger (headache, lack of concentration, irritability, easily agitated) and/or thirst (fatigue, sunken eyes, dry mouth and vomiting). Each symptom identified or observed should be addressed in turn since each may have various attributed causes. Supporting parents in identifying and managing symptoms presented by their child, offering rationalisation, and addressing concerns around the symptoms they perceive may occur are important aspects of management.

When considering enteral feeding at end of life

The guidance is mainly focused on those over 1 year of age, but most aspects are applicable to those under 1 year of age. Additional considerations particularly in the neonatal period may be needed, including, for example, the role of breast feeding, colostrum and sucrose for comfort.

The role of enteral feeding towards the end of life

The role of the enteral feeding regimen is usually to attempt to alleviate symptoms of hunger and dehydration, particularly in those children who are unable to take adequate quantities of food or fluid orally. The aim of such feeding regimens is not to meet the child’s full nutritional requirements and not to prevent deterioration in nutritional status at this stage of illness. An algorithm (figure 2) has been devised to guide decision-making about enteral feeding planning at end-of-life care in a community setting for children over 1 year of age.

Optimising an individual feeding regimen

Several considerations should be made when determining an optimal feeding regimen.

  • The route of access.

  • Consider NGT placement as this can be placed most easily in the home or hospice setting. However, placement of the NGT can be distressing and uncomfortable initially and can also mask the child’s face. Education around its use is needed, and checking the position using an X-ray, requiring hospital review, may be needed if the appropriate pH is not obtained on the aspirate.

  • NJT will generally need endoscopic placement or radiological confirmation to guarantee correct positioning. In most cases an enteral feeding pump is the best option for both continuous and bolus feeding as it is easier to control the rate. However, when a feeding pump is not available, the gravity drip feed can be used as an alternative.

Starting enteral feeds

If after a comprehensive MDT discussion it is agreed that enteral feeds should be started for an individual patient, we recommend the following approach: For a new patient starting feed (over the age of 1 year), it is recommended that a 1 kcal/mL feed is used. Elemental feeds may be considered for ease of digestion. For those patients less than 1 year of age, the most appropriate feed should be discussed with their paediatric dietitians. Fibre-containing feeds can be considered if feeding is tolerated; it is worth noting that the fibre content of such feeds does not effectively manage constipation in the immobile child. The use of a fibre feed may indeed contribute to the risk of abdominal discomfort and possible diarrhoea in some patients. For patients with difficult-to-control diarrhoea, a trial of peptide feeds may be worth considering if the standard feeds cause worsening in symptoms. Where additional hydration is required, dioralyte may be tolerated at higher rates than milk feed. Care should be taken with the positioning of the child when administering fluid at faster rates. Refeeding syndrome, while rare, can occur in children who have been without food for long periods and have become malnourished. In this situation professionals should consider biochemical monitoring, with a refeeding programme being started cautiously. The MDT should consider the appropriateness and benefits of introducing feeding at this stage in the context of a child at high risk of refeeding syndrome.

Maintaining enteral feeds

If the child stabilises or improves clinically and is considered not in the end-of-life phase, then an individualised feeding plan should be sought from local or specialist dietetic services. The ideal feeding regimen for the patient will be determined partly by gastric function. The MDT needs to minimise emesis, optimise gastric emptying and normalise bowel function as much as possible. To minimise regurgitation of feed, the position of the child when feeding needs to be considered and prokinetic agents may need to be administered. Pharmacological gastric protection may also be required.

Subcutaneous fluids for children towards the end of life

Before subcutaneous fluids are considered, the goals of the treatment must be addressed by the healthcare team and the parents/carers and discussed with the child (as able) with regular review. Artificial hydration may occasionally be indicated towards the end of life to satisfy thirst or alleviate symptoms of dehydration when prognosis is more than 24 hours. The subcutaneous route is an alternative option in restoring and maintaining hydration in the short term if the enteral route is not available.32 However, its use can be problematic in the paediatric setting with limited practical experience with regard to its use, limited knowledge on the decision-making around the volume of fluid needed and the potential complications that can occur.

Indication

The main indication for use would be to maintain hydration and to reduce sensation of thirst in those patients who are unable to sustain adequate oral or enteral fluids. Subcutaneous fluids would be contraindicated in those children who are imminently dying and for whom hydration will not improve symptom relief,33 or those who are fluid-restricted, have cachexia, have limited subcutaneous tissue or are at risk of fluid overload (eg, ascites and peripheral oedema), or who may experience subcutaneous site problems due to bleeding or skin disorders, for example, thrombocytopaenia.

Practical issues

Overnight subcutaneous infusion may meet baseline fluid requirements and relieve the burden of restricting movement during daytime. A suitable site with plentiful subcutaneous tissue (eg, abdominal wall, upper thigh) if available is preferred, avoiding areas with skin damage, for example, oedema, lymphoedema or radiotherapy sites. The site should be checked daily and rotated every 48–72 hours, which may be contrary to other subcutaneous infusion administrations. The reduced timeframe is to minimise tissue damage and poor absorption. Skin breakdown, line occlusion or displacement, infection, and local oedema are all risks associated with subcutaneous fluid use. The subcutaneous fluids can be infused by gravity or pump in any care setting. The composition, viscosity and concentration of the subcutaneous fluid affect flow. Roller clamps used to adjust and maintain rates of flow on gravity infusions vary in their efficiency and accuracy and are also affected by patient movement and by the height of the infusion container, which should be 1–1.5 m above the infusion site.

Formulations for subcutaneous infusion pump and gravity flow rates

The formulation for subcutaneous pump volumes and flow rates is derived from adult guidelines and adapted for children by the specialist guideline group. The child’s weight guides the volume of fluid deliverable over a 24-hour period. The total volume of fluid determined may be initially based on a percentage (eg, 10%–30%) of standard intravenous fluid maintenance guidance. It is likely that significantly lower volumes are initially used and increased if tolerated. The amount of fluid to be delivered in a 24-hour period is a clinical decision based on the child’s hydration status, underlying disease, tolerability to the volume delivered and their current clinical state.

The subcutaneous infusion pumps or gravity flow rates are calculated using a formula (box 1) that requires the following information33 34:

Box 1

Stepwise approach to subcutaneous infusion volume and flow rate

Step 1: determine the child’s intravenous maintenance (100%) fluids.

For example, a 25 kg child would receive 100 mL/kg for the first 10 kg and 50 mL/kg for the second kg and 10 mL/kg for further kg: (100 mL×10)+(50 mL×10)+(10 mL×5)=1550 mL/24 hours (100% intravenous maintenance fluids).

Step 2: determine the percentage of maintenance fluids to deliver (start low and titrate as tolerated).

For example, 20% of maintenance fluids in a 25 kg child: 20%×1550 mL=310 mL in 24 hours.

Step 3: determine how long to run the infusion in a 24-hour period, for example, over 12 hours or 24 hours.

In 24 hours: run rate=310 mL/24 hours=13 mL/hour.

In 12 hours: run rate=310 mL/24 hours=26 mL/hour.

Step 4: determine the equipment to deliver the infusion.

Either use an infusion pump and run the volume over the required time period, for example, 12 or 24 hours, or use gravity and calculate a drip rate using the drip rate formula.

Step 5: for drip rates, use the drip rate formula.

Drip rate formula.33 34

Administration rate of a continuous/intermittent infusion =

Embedded Image

For example, in a 25 kg child starting 20% of maintenance fluid over a 24-hour period.

Embedded Image

  • Adapted from adult formulae: Campbell and Partridge33 and Dougherty and Lister.34

  • The volume to be infused.

  • The number of hours the infusion is running over.

  • The drop rate of the administration set.

Infusion pumps can be used, but in a community setting they are rarely used or readily available. Therefore, a traditional drop rate method (drip rate formulae) can be considered. The number of drops per millilitre is dependent on the type of administration set used and the viscosity of the infusion fluid. For example, crystalloid fluid (sodium chloride 0.9%) must be administered via a solution set delivered at a rate of 20 drops/mL.

Limitations of the guidance

This guidance is a starting point in addressing the gap in knowledge and guidance around ANH in children nearing the end of life. The guidance mainly consists of specialist consensus experience due to the lack of evidence base, and it is recognised as a starting point to develop and promote auditing of current practice and consideration of future research.

Postimplementation

This guideline has now been incorporated into one paediatric centre’s Trust policies, and the four collaborating centres involved in the development of this guideline are seeking to audit the guidance. The process will include review of all deaths in the last few weeks of life and the decision-making and role of ANH.

Discussion

The role of ANH in children’s care towards the end of life

There is strong emotional and social symbolism associated with feeding. Feeding is a fundamental component of the parent and child relationship, and thus discussions on ANH can be emotionally charged and challenging. Clinical judgement for ANH will be based on the need to provide comfort care weighed against the burden of delivery and tolerability of the child to ANH, their predicted length of life (eg, hours, days or weeks), their quality of life (as perceived by family and professionals) and specific concerns regarding the individual child. This must be discussed openly with parents or carers, and where appropriate the child or young people. It is advised that clinicians set clear expectations about ‘when to stop’ ANH and the complications which may arise.35

The balance of symptom relief, using comfort feeds, rather than a meticulous nutritional support plan, should be explored and a paediatric dietitian engaged to advise on ANH feeding plan if required (figure 2).

Conclusion

There is a paucity of evidence on the role, use and benefit of ANH in children. Even in the adult literature, there is insufficient evidence available to provide evidence-based recommendations for clinical practice on the use of artificial nutrition36 and hydration37 towards the end of life. These consensus guidelines from four paediatric palliative care centres seek only to provide discussion and a practical guide on the use of enteral feeding and subcutaneous hydration for children at end of life. Decision-making requires careful deliberation and a wider MDT discussion to establish clear goals of care for the child and their family.

Acknowledgments

The authors wish to thank Sally Nissen (tutor, King's College London, previously nurse lead, Palliative Care Children Trust) and Gayle Black and Louise Henry (senior paediatric dietitians, Royal Marsden NHS Trust) for their contribution.

References

Footnotes

  • Contributors A-KA: concept, design, analysis, consensus review, draft, revision. KB: literature review, draft, revision. LB: analysis, interpretation, consensus review, draft, revision. MK and RM: concept and design, consensus review, draft, revision. MB: concept and design, literature review, analysis, consensus review.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.