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Infants and Children

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Life-limiting conditions in the infant and children populations
Guidelines for Management
The Speech Pathologist's Role
Dysphagia
Speech
Holistic Management
Information for Families
References

Life-limiting conditions in the infant and children populations

Sadly, infants and children can also face life-limiting conditions and thus require a palliative care approach. The care of these infants or children is multidisciplinary (Bosma, 1997), and may involve speech pathology input*.

Conditions encountered in paediatric palliative care may include terminal cancer; brain tumours; muscular dystrophy; life-limiting forms of cerebral palsy; multiple organ failure; various neuro-degenerative diseases, such as infant Motor Neuron Disease (MND) and Huntington's Disease; genetic conditions; cystic fibrosis; and syndromes, such as Leigh Syndrome or Fazio-Londe Syndrome* (*these were listed as conditions encountered by speech pathologists surveyed; see also Muscular Dystrophy Australia, 2005; Very Special Kids, 2004a; Palliative Care Australia, 2003; Mashford et al., 2001). Cancer is reported as the second most common cause of death in children, after traumatic accidents (Wolfe et al., 2000); however, little is known about the symptoms and suffering that these children face (Wolfe et al., 2000).

Infants in neonatal intensive care units (NICU) may also face early death due to prematurity, complex medical problems and/or multiple congenital anomalies (Yam, Rossiter & Cheung, 2001). Neonates and infants have the highest death rate of the paediatric population, yet again there is a lack of research concerning their end-of-life care (Pierucci, Kirby & Leuthner, 2001).

Guidelines for Management

There has been very little research done specifically on palliative care practices with paediatric patients (Hinds et al., 2005; Nuss, Hinds & LaFond, 2005; Rowe, 2003; Cooley et al., 2000) due to the nature of this care setting (see the ETHICS AND RESEARCH section of this website). Further research in this area is considered essential to guide practice and reduce suffering for paediatric clients receiving palliative care (Hinds, Oakesa, Hicksa & Anghelescua, 2005).

General management guidelines or philosophy of care statements should be drawn upon to guide the practice of all members of the health care team*. These general guidelines for care may be found within hospital units that are specialised to provide palliative services for infants and children. For example, the Royal Children's Hospital (RCH; 2003) has developed a set of general management guidelines for paediatric palliative care - see http://www.rch.org.au/rch_palliative/prof/index.cfm?doc_id=1652. Such guidelines outline an overall approach to care, with components such as individualising care, and minimising distressing symptoms (RCH, 2003). They do not necessarily include specific practices of the speech pathologist in paediatric palliative care.

Due to a lack of literature on the speech pathologist's role in paediatric palliative care, the following information has primarily been obtained via survey responses of speech pathologists experienced in the palliative care of infants and/or children*.

The Speech Pathologist's Role

Paediatric palliative care is a very specialized area of speech pathology practice. Nevertheless, speech pathologists working in acute or other paediatric settings may be involved in the care of an infant or child whose needs become palliative*. Speech pathologists working with children receiving palliative care may be expected to assess and intervene in similar areas as with adults in palliative care (see sections on DYSPHAGIA, SPEECH, COMMUNICATION and COGNITION). However, there are added complexities and different issues when dealing with infants or children*, and findings from studies with adult populations may not be able to be generalised (DeMatteo, Matovich & Hjartson, 2005; Hinds et al., 2005; PCA, 2003; Mashford et al., 2001).

The primary goals of providing paediatric palliative care are to enhance comfort of the infant or child and their family, provide support to the family or caregivers, and facilitate end-of-life decision-making (Hinds et al., 2005).

The following sections describe specific roles of the speech pathologist in paediatric palliative care.

Dysphagia

Many of the conditions faced by children or infants in palliative care can involve problems with swallowing or eating and drinking (Mashford et al., 2001). Speech pathologists with experience in paediatric palliative care report receiving referrals for dysphagia assessment and management with such cases*.

Children with severe neurological conditions have been reported to have an aspiration prevalence of 68-70% (DeMatteo et al., 2005). Arvedson et al. (1994) found a 94% rate of silent aspiration in a study of children with severe neurological conditions (as cited in DeMatteo et al., 2005). In addition, aspiration is the most common cause of respiratory illness in children with cerebral palsy, which can subsequently lead to, or hasten, death (Mashford et al., 2001).

Prematurely-born infants who are not expected to survive to full development can also suffer problems with oral feeding (Hurst, 2005), as well as severe respiratory difficulties* which may impact on the infant's ability to receive oral intake.

Assessment
In children or infants facing the end-of-life, it is understood that in some cases the assessment and management of dysphagia may not be a main priority of the child or their family*. However, there are benefits to assessing a child or infant's swallowing in palliative care. A swallowing assessment provides the speech pathologist with information, allowing him/her to better explain the infant or child's swallowing difficulties to the child and family, in order for them to make informed decisions regarding oral versus non-oral intake*. Assessment also provides information necessary for the speech pathologist to determine appropriate feeding recommendations*.

Evaluation of the feeding process in infants or children may involve a range of disciplines, including developmental paediatrics, neurology, psychology, radiology, surgery, rehabilitative medicine, nutrition, occupational therapy and speech pathology (Bosma, 1997). The clinician immediately involved in assessment and therapy for feeding impairments is usually a speech pathologist, though in the United States an occupational therapist is often also directly involved (Bosma, 1997).

It is suggested that both informal and formal assessments are used as appropriate, depending on the individual client and their needs*.

As part of a swallowing assessment, the speech pathologist may interview parents and children regarding the child's feeding difficulties*. A clinical or bedside evaluation* (Miller, 1997) of the infant or child's swallowing is then necessary for determining appropriate feeding strategies and recommendations (Sheckman & Manno, 1996, as cited in DeMatteo et al., 2005). Informal assessment may also include an oral peripheral examination or bulbar assessment*.

In a study by DeMatteo et al. (2005), the presence of a cough was found to be the single most significant predictor of aspiration of fluid in 75 children with feeding problems, ranging from 0-15years of age. The aspiration risk factor increased when other factors were also present, such as voice changes, colour changes, and/or delayed swallow (DeMatteo et al., 2005).

Videofluoroscopic swallowing studies (VFSS) have been said to be an important part of paediatric swallowing assessment* (DeMatteo et al., 2005; Zerilli, Stephans & Dipietro, 1990), as clinical evaluation of swallowing may fail to detect aspiration or penetration of food or fluid into the lungs (Groher, 1994). However, it may not be necessary to conduct both types of assessment. It has been suggested that VFSS may be overused in children for whom it is not needed (DeMatteo et al., 2005). The appropriateness of this assessment will depend on the child's age and ability to sit through the procedure, and must be determined on a case-by-case basis*.

In a study by DeMatteo et al. (2005), it was found that clinicians with greater than 5 years' experience were highly accurate in detecting fluid aspiration and penetration via clinical evaluation. Thus, it is also suggested that clinicians who are uncertain about a client's aspiration risk should use their uncertainty as an indicator that a further videofluoroscopic examination may be required (DeMatteo et al., 2005).

The clinician should also consider whether the results of a videofluoroscopic assessment would be likely to alter the diagnosis or management of a given case (Miller, 1997). For example, children who are expected to live for a number of weeks or months and their parents may benefit from the child undergoing a videofluoroscopic assessment, as it can allow the speech pathologist to explain more clearly the reasons for the child's swallowing difficulties. It may also facilitate the provision of some simple, specific strategies for improving the child's ease of oral feeding*. On the other hand, for some infants or children, and their parents, feeding may not be a major priority, and thus a videofluoroscopic assessment may be deemed inappropriate*. Please see the DYSPHAGIA and ETHICS sections of this website for further advice on decision-making regarding appropriateness of formal swallowing assessment.

Intervention
"The appropriateness of invasive interventions needs to be weighted against the imminence of dying" (Hinds et al., 2005, p. 58). In paediatric palliative care, the speech pathologist's role in dysphagia intervention primarily involves providing strategies to compensate for impaired swallowing function*, to enhance the ease and safety of oral intake. Strategies given may include postural changes; changes in rate of food presentation; use of modified feeding tools; and modifications to the amount and texture of food presented*, such as softer consistencies and thickened fluids (Bosma, 1997). During feeding, the child may benefit from additional strategies such as taking smaller mouthfuls; chewing on the stronger side; double-swallowing; and suctioning when necessary*. It is also important to try and make the child's food preferences available to them wherever possible*. Appropriate strategies and types/consistencies of food must be determined for each child on a case-by-case basis following a clinical evaluation of swallowing (Sheckman & Manno, 1996, as cited in DeMatteo et al., 2005).

For some infants or children, use of a nasogastric (NG) tube or percutaneous endoscopic gastrostomy (PEG) feeding may be indicated*. In these cases, the speech pathologist and other team members should provide the family and caregivers with clear and comprehensive information regarding the risks and benefits associated with oral versus non-oral (i.e. tube) feeding options*.

Other parts of the speech pathologist's role in dysphagia management of children or infants in palliative care may include:

Holding phone consultations with parents or caregivers regarding the child's swallowing function*.
Recommending appropriate bottles and teats for infants receiving palliative care*.
Dealing with oral hygiene issues (see ORAL CARE section of this website), however, this aspect is reportedly usually managed by nursing staff*.

Speech

Many of the conditions faced by children in palliative care can involve deterioration of, and difficulties communicating via, speech* (Mashford et al., 2001).

Assessment
The goal of assessing a child's speech in palliative care is primarily to obtain the information necessary to ensure that the child has an effective means of communication as their condition progresses*. This information may also allow the speech pathologist to better explain and discuss the child's speech difficulties with the child and their family.

Speech pathologists working with children who are receiving palliative care have reported using the following formal and informal speech assessments where appropriate*:

The Fisher-Atkin Articulation Survey
Apraxia Profile
Speech sample analysis, and thus classifying the type of motor speech impairment (e.g. dysarthrias or dyspraxia)
Informal analysis of perceptual voice features
Parent/child interviews

By the time a child enters the palliative stage of care, standardised assessments may have already taken place earlier on*. Results of these procedures and of ongoing assessment should be used to guide individualized intervention procedures.

Intervention
In cases where speech and/or language skills are deteriorating over time, speech pathology intervention may include*:

Educating the family or caregivers regarding adaptive strategies to enhance their child's communicative effectiveness
Educating the child regarding methods of repairing communication breakdown, and/or speech modification strategies, such as over-articulation or amplification, to improve intelligibility
Providing an electronic communication device
Implementing non-electronic augmentative and alternative communiation (AAC) boards
Instigating the use of signing
Holding phone consultations with parents or caregivers regarding the child's AAC device and/or swallowing function*

Effective use of communication strategies and/or devices should be employed as early as possible in the disease progression, and continued by the family and child with ongoing support from the speech pathologist as required*.

Holistic Management

It is important to remember to keep the "bigger picture" in mind throughout all stages of management*.

The following list contains general advice for the speech pathologist working in paediatric palliative care. This advice is applicable throughout assessment, intervention, and in the process of facilitating end-of-life decision-making.

Provide parents with clear facts about their child's feeding and/or communication status, and information about the complexities of continued care. Such information from health professionals has been identified as one of the most frequently reported factors influencing parents' decision making during palliative care of their child (Nuss et al., 2005).
Use of visual aids such as videos (e.g. videofluoroscopy assessment videos) combined with verbal explanations has been found to be useful in informing parents of their child's swallowing ability and risks associated with oral feeding*.
Make an effort to meet with the parents regularly*.
Provide support, and listen and respond to concerns of the parents throughout their child's care (Nuss et al., 2005).
Support parents through the transition from curative or acute care to palliative care*.
In making recommendations, consider the family's main concerns and priorities; the child's age, symptoms, prognosis, cognitive level, and quality of life*; and the overall aim of intervention (Hinds et al., 2005).
Include the child in treatment decisions to the greatest degree allowed by their decision-making capacity (Burns & Mitchell, 2005; Hinds et al., 2005; Rowe, 2003; American Academy of Pediatrics, 1995).
Acknowledge and work within the family's values, beliefs, parental understanding of their child's condition, and family and client preferences (Hinds et al., 2005).
Support parents' decisions* and acknowledge their efforts to improve their children's comfort (Hinds et al., 2005).
Continually check client information regarding team members' assessment and management, the child's progress and prognosis*.
Regularly evaluate treatment decisions and outcomes (Hinds et al., 2005).
Ensure regular, honest and open communication with parents and other members of the interdisciplinary team (Hinds et al., 2005; Ziev, 1999). This will help in optimising holistic care, and ensuring a reliable point of contact and consistency in information sharing for parents*.
Find resources to better support parents (Hinds et al., 2005).

Being involved in the care of infants and children with palliative needs can be a stressful, daunting and emotionally challenging task* (Palliative Care Victoria, 2005; Hinds et al., 2005; Yam et al., 2001). Informal debriefing, often in the form of discussion with colleagues, is extremely valuable* and can help reduce emotional distress associated with this field of work (Yam et al., 2001). Please see the SELF CARE section of this website for advice on how to prevent and minimise the negative emotional effects of working in this field.

Information for Families

This section of the website is primarily an educational resource for speech pathology professionals who work with children who have a life-limiting illness. The information included is often technical and not intended for families. The following websites provide information and useful links for families of children receiving palliative care:

References

American Academy of Pediatrics: Committee on Bioethics (1995). Informed consent, parental permission, and assent in pediatric Practice. Pediatrics, 95, 314-317.

Bosma, J. (1997). Development and impairments of feeding in infancy and childhood. In M. Groher (Ed.), Dysphagia: Diagnosis and management (3rd ed., pp. 169-190). Melbourne: Butterworth-Heinemann.

Burns, J., & Mitchell, C. (2005). Is there any consensus about end-of-life care in pediatrics? Archives of pediatrics and adolescent medicine, 159(9), 889-891.

Cooley, C., Adeodu, S., Aldred, H., Beesley, S., Leung, A., & Thacker, L. (2000). Literature review. Paediatric palliative care: a lack of research-based evidence. International Journal of Palliative Nursing, 6(7), 346-51.

DeMatteo, C., Matovich, D., & Hjartson, A. (2005). Comparison of clinical and videofluoroscopic evaluation of children with feeding and swallowing difficulties. Developmental Medicine and Child Neurology, 47(3), 149-157.

Groher, M. (1994). The detection of aspiration and videofluoroscopy. Dysphagia, 9, 147-148.

Hinds, P., Oakesa, L., Hicksa, J., & Anghelescua, D. (2005). End-of-life care for children and adolescents. Seminars in Oncology Nursing, 21(1), 53-62.

Hurst, N. (2005). Assessing and facilitating milk transfer during breastfeeding for the premature infant. Newborn and Infant Nursing Reviews, 5(1), 19-26.

Mashford, M., Aranda, S., Ashby, M., Bowman, J., Brooksbank, M., Cairns, W., Currow, D., Hynson, J., Kissane, D., Maddocks, I., Mitchell, G., O'Connor, M., Poole, S., Ravenscroft, P., Robinson, J., & Smith, M. (2001). Therapeutic Guidelines: Palliative Care, Version 1. North Melbourne: Therapeutic Guidelines Limited

Miller, R. (1997). Clinical examination for dysphagia. In M. Groher (Ed.), Dysphagia: Diagnosis and management (3rd ed., pp. 169-190). Melbourne: Butterworth-Heinemann.

Muscular Dystrophy Australia (MDA) (2005). The Home of MDA. Retrieved September 22, 2005, from http://www.mda.org.au/

Nuss, S., Hinds, P., & LaFond, D. (2005). Collaborative clinical research on end-of-life care in pediatric oncology. Seminars in Oncology Nursing, 21(2), 125-134.

Palliative Care Australia (PCA) (2003). Palliative care service provision in Australia: A planning guide. Retrieved June 10, 2005, from http://www.pallcare.org.au/Portals/9/docs/publications/Planning%20guide2003.pdf

Palliative Care Victoria (2005). Support for families. Retrieved October 6, 2005, from http://www.pallcarevic.asn.au/

Pierucci, R., Kirby, R. & Leuthner, S. (2001). End-of-life care for neonates and infants: The experience and effects of a palliative care consultation service. Pediatrics, 108(3), 653-660

Rowe, M. (2003). When children die: Improving palliative and end-of-life care for children and their families. Archives of Pediatrics and Adolescent Medicine 157(10), 1035.

Royal Children's Hospital (RCH) (2002). Palliative care: For families. Retrieved October 6, 2005, from http://www.rch.org.au/rch_palliative/families/?doc_id=1651

Royal Children's Hospital (RCH) (2003). Palliative care: For health professionals. Retrieved October 6, 2005, from http://www.rch.org.au/rch_palliative/prof/index.cfm?doc_id=1652

Very Special Kids (VSK) (2004a). Who we are. Retrieved August 25, 2005, from http://www.vsk.org.au/Whoweare

Very Special Kids (VSK) (2004b). Welcome to Very Special Kids. Retrieved October 16, 2005, from http://www.vsk.org.au/

Wolfe, J., Grier, H., Klar, N., Levin, S., Ellenbogen, J., Salem-Schatz, S., Emanuel, E., & Weeks, J. (2000). Symptoms and suffering at the end of life in children with cancer. The New England Journal of Medicine 342(5): 326-333.

Yam, B., Rossiter, J., & Cheung, K. (2001). Caring for dying infants: Experiences of neonatal intensive care nurses in Hong Kong. Journal of Clinical Nursing, 10(5), 651-659.

Zerilli, K., Stephans, V., & Dipietro, M. (1990). Protocol for the use of videofluoroscopy in pediatric swallowing dysfunction. American Journal of Occupational Therapy, 44, 441-446.

Ziev, M. (1999). Earliest intervention: Speech-language pathology services in the neonatal intensive care unit. American Speech Language Hearing Association, 41(3), 32-36.

Please note: Asterisk (*) indicates that information is based on the survey responses of 13 experienced speech pathologists working in palliative care in Victoria.

Disclaimer: The purpose of this website is to provide speech pathologists with a summary of the available evidence-base and current practice when dealing with patients in palliative care. The guidelines provided may be used as a guide for providing palliative care; however, cases will undoubtedly arise for which our findings may not be readily applied. The information contained in the website is not intended to prescribe specific procedures to use with palliative patients referred to speech pathology, but rather aims to assist speech pathologists by outlining the available evidence base and current practice methods used in the area. Information regarding current practice in palliative care was obtained from surveying thirteen speech pathologists with experience working in palliative care. It must be noted that not all speech pathologists surveyed contributed equally to all sections of this website.

© Copyright 2005.
Website developed by forth year speech pathology students Jane-Frances Gooden, Courtney Jones, Alyssa Mann, Marita McDowall and Jo Shugg. Supervised by Louise Brown.
School of Human Communication Sciences, La Trobe University, Melbourne, Australia.