Ethical and Legal Challenges in Feeding and Swallowing Intervention for Infants and Children

ABSTRACT

Over the past decade, speech-language pathologists (SLPs) have increased their involvement in the assessment and management of infants and children with complex feeding and swallowing problems. Given the complex problems demonstrated by these infants and children that vary across a range of conditions and degrees of severity, SLPs need to increase their knowledge in all the topics covered in this issue. This article will discuss the current state of evidence-based decision making, levels of evidence for studies of treatment efficacy, ethical principles in evidence-based decision making, and ethical decision-making considerations with feeding and swallowing issues using examples of three types of populations of infants and children with complex feeding and swallowing problems.

KEYWORDS

Dysphagia - deglutition - evidence-based - bioethics - pediatric

REFERENCES

• 1 Maillet J O, Potter R L, Heller L. Position of the American Dietetic Association: ethical and legal issues in nutrition, hydration, and feeding.  J Am Diet Assoc. 2002;  102(5) 716-726
• 2 American Speech-Language-Hearing Association . Code of ethics (revised).  ASHA Suppl. 23 13-15
• 3 Haynes R B, Sackett D L, Guyatt G H, Tugwell P. Clinical Epidemiology: How to Do Clinical Practice Research. Edinburgh, Scotland; Elsevier Churchill Livingstone 2006
• 4 Straus S E, Richardson W S, Glasziou P, Haynes R B. Evidence-Based Medicine. How to Practice and Teach EBM. 3rd ed. Edinburgh, Scotland; Elsevier 2005
• 5 Low J, Wyles C, Wilkinson T, Sainsbury R. The effect of compliance on clinical outcomes for patients with dysphagia on videofluoroscopy.  Dysphagia. 2001;  16 123-127
• 6 Scottish Intercollegiate Guideline Networks.  Methodology Checklists March. 2004;  http://Available at: www.sign.ac.uk Accessed April 17, 2007; 
• 7 Coyle J L, Leslie P. Evidence-based practice - the ethical imperative. Perspectives on swallowing and swallowing disorders.  Dysphagia. 2006;  15(4) 1-7
• 8 Beauchamp T L, Childress J F. Principles of Biomedical Ethics. 4th ed. New York; Oxford University Press 1994
• 9 Horner J. Morality, ethics, and law: introductory concepts.  Semin Speech Lang. 2004;  24 263-274
• 10 Raina P, O'Donnell M, Rosenbaum P et al.. The health and well-being of caregivers of children with cerebral palsy.  Pediatrics. 2005;  115(6) e626-e636
• 11 Sayeed S A. Baby doe redux? The Department of Health and Human Services and the Born-Alive Infants Protection Act of 2002: a cautionary note on normative neonatal practice.  Pediatrics. 2005;  116(4) e576-e585
• 12 Brinchmann B S. ‘They have to show that they can make it': vitality as a criterion for the prognosis of premature infants.  Nurs Ethics. 2000;  7(2) 141-147
• 13 Brinchmann B S, Forde R. What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants.  Nurs Ethics. 2002;  9(4) 388-404
• 14 Noel-Weiss J, Walters G J. Ethics and lactation consultants: developing knowledge, skills, and tools.  J Hum Lact. 2006;  22(2) 203-212
• 15 Brinchmann B S. When the home becomes a prison: living with a severely disabled child.  Nurs Ethics. 1999;  6(2) 137-143
• 16 Carnevale F A, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home.  Pediatrics. 2006;  117(1) e48-e60
• 17 Mackie S B. PEGs and ethics.  Gastroenterol Nurs. 2001;  24(3) 138-142
• 18 Luce J M, Alpers A. End-of-life care: what do the American courts say?.  Crit Care Med. 2001;  29(2 Suppl) N40-N45
• 19 O'Keefe M E, Crawford K. End-of-life care: legal and ethical considerations.  Semin Oncol Nurs. 2002;  18(2) 143-148
• 20 Rousseau P. Ethical and legal issues in palliative care.  Prim Care. 2001;  28(2) 391-400
• 21 Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death.  Dysphagia. 1992;  7(2) 102-105
• 22 Taylor S L. Quandary at the crossroads: paternalism versus advocacy surrounding end-of-treatment decisions.  Am J Hosp Palliat Care. 1995;  12(4) 43-46
• 23 Trnobranski P H. The decision to prolong life: ethical perspectives of a clinical dilemma.  J Clin Nurs. 1996;  5(4) 233-240