LSHSS

Clinical Forum

Ethical Issues in Providing Services in Schools to Children With Swallowing

and Feeding Disorders

Nancy P. Huffman Churchville, NY

DeAnne W. Owre Woonsocket School System, Woonsocket, RI

I ndividuals across the life span with swallowingand feeding disorders (dysphagia) receive treatmentand management services from speech-language pathologists (SLPs). The 1999 American Speech-Language-Hearing Association (ASHA) Omnibus Survey reported that more than 50% of SLPs were involved in the clinical management of dysphagia (ASHA, 1999). Persons with dysphagia receive treatment in a variety of settings. Treatment occurs at home via home health care, at early intervention program sites, hospitals, residential facilities, nursing homes, daycare centers and nursery schools, facilities and

worksites for individuals with developmental disabilities, rehabil- itation facilities, clinics, agencies, and private practices. As part of their workload, SLPs in school-based settings routinely provide services to students who were born prematurely or who have neurologic conditions, craniofacial anomalies, complex medical conditions, head injury, or other serious chronic illnesses and in- juries. Many of these students1 require dysphagia treatment and management. On the 2006 ASHA Schools Survey (ASHA, 2006a), 10% of respondents reported that they regularly serve students with dysphagia and that the average number served in the caseload was four students.

Regarding schools in relation to other, primarily medical, settings, Logemann and O’Toole (2000) observed,

Differences between professionals working in each setting are decreasing for two reasons. First, more sick children are expected by their third-party payers to receive their dysphagia management in the schools and, second, schools are billing third parties for the kinds of speech and swallowing treatment being provided in the educational setting. Although, obviously, there are continuing differences between the various work settings, in the area of dysphagia, many commonalities exist between the medical and school settings. (p. 79)

This article will review and explore ethical issues in dysphagia treatment that confront the SLP, including practice and ethical considerations in the context of the school setting.

ABSTRACT: Purpose: This article is a commentary and discussion of ethical issues in dysphagia services as related to school-based practice in speech-language pathology. Method: A review of the literature on ethical issues in the provision of speech-language pathology services to individuals with dysphagia was conducted, with particular emphasis on students receiving school-based services. Results: Issues in dysphagia management that were identified in the literature review are discussed from the perspective of biomedical ethics, professional ethics, and professional practice issues pertinent to the school setting. Conclusion: Considerations, suggestions, and resources for ethically responsive action on the part of the school-based speech-language pathologist are provided.

KEY WORDS: ethics, dysphagia, schools, competence

1Given the focus of this article on school-based practice, the term “student” is used when referring to infants, toddlers, children, and youth receiving services via school-based programs.

LANGUAGE, SPEECH, AND HEARING SERVICES IN SCHOOLS • Vol. 39 • 167–176 • April 2008 * American Speech-Language-Hearing Association

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ETHICS AND DYSPHAGIA: LITERATURE REVIEW AND DISCUSSION

Basic Concepts: Biomedical and Professional Ethics

An understanding of basic ethical concepts of self-determination, beneficence, nonmaleficence, and justice (Beauchamp & Childress, 2001; Horner, 2003; Strand, 1995) is necessary for the provision of ethically responsible service to all persons who are served by SLPs. Self-determination or autonomy refers to the professional’s responsibility to respect the right of the individual to make care decisions for him- or herself. Beneficence refers to the profes- sional’s responsibility to act for the benefit or good of the client. Nonmaleficence refers to the professional’s responsibility to avoid unnecessary harm to the client. Justice refers to the professional’s responsibility to act fairly, to distribute resources fairly, and to see that the client receives the service that he or she deserves. Horner provided a tutorial on values, morality, philosophy, ethics, and law and their relationship to one another in guiding courses of action relative to these concepts. Consequently, in the provision of care to persons with dysphagia, SLPs must strive to (a) respect the wishes of their clients or their surrogate decision makers (e.g., desire for oral feeding/desire for tube feeding); (b) do good or do the “right thing” (e.g., provide for appropriate intake of nutrition); (c) prevent harm (e.g., reduce negative, even life-threatening, consequences associated with eating/feeding); and (d) do this by fairly allocating resources, both human and financial.

Much of the speech-language pathology literature on ethical decision making in dysphagia explores in depth the concepts of self- determination, beneficence, nonmaleficence, and justice in vari- ous situations (Flather-Morgan, 1994; Goldsmith, 1999; Groher, 1990, 1994; Landes, 1999; Lazarus, 1996; Lefton-Greif, 2001; Lefton-Greif & Arvedson, 1997; Pittenger, 1997; Rubin, Wilson, Fischer, & Vaughn, 1992; Segal & Smith, 1995; Serradura-Russell, 1992; Sharp & Genesen, 1996; Shelley, 1995; Strand, 1995, 2003). In providing dysphagia services, SLPs must deal with medical realities, the client’s personal preferences, and considerations for quality of life. This must all be done within a larger context of considerations including family preferences, care team preferences, caregiver preferences, legal/regulatory rules, costs, and adherence to professional ethical obligations. Decision-making models for dysphagia services (as well as other life-impacting medically com- plex conditions) attempt to balance the basic tenets of autonomy, beneficence, nonmaleficence, and justice given the client’s cir- cumstance (Beauchamp & Childress; 2001; Flather-Morgan, 1994; Lefton-Greif, 2001; Lefton-Greif & Arvedson, 1997; Sharp & Genesen, 1996; Strand, 1995, 2003).

Professional ethics are promulgated in codes of ethics such as the Code of Ethics of the American Speech-Language-Hearing Association (ASHA, 2003a). Professional codes involve rules or standards that have been agreed on by the members of the or- ganization or profession and that govern the conduct and activities of its members.

The ASHA Code of Ethics (ASHA, 2003a) consists of four principles of ethics that constitute the moral basis for the code. These four principles deal with responsibilities to persons served professionally, responsibility for one’s professional competence, responsibility to the public, and responsibilities involving inter- and intraprofessional relationships. Each principle has its associated

rules of ethics that further elaborate on acceptable or unacceptable conduct.

Professional ethics and biomedical ethics are indeed intertwined. As students with medically compromising issues (such as dysphagia) continue to enter school caseloads, SLPs in schools will find themselves involved in discussions not only within the framework of professional ethics but also, and to a greater extent than pre- viously, within the framework of biomedical ethics. That is, bal- ancing doing what is of benefit to the student (beneficence) with doing no harm (nonmaleficence); considering the wishes of a parent or a surrogate acting on behalf of the student who legally, and/or because of age, or because of the degree of disability, is unable to express wishes or participate in decisions (client autonomy in self- determination); or determining type, intensity, and frequency of services given the school district’s resources (justice).

Arvedson (2000), Brady (1998a), Lefton-Greif and Arvedson (1997), and Lefton-Greif (2001) focused on pediatric populations. Informed decision making brings its own set of issues in pediatric populations where parents act on behalf of their child. For exam- ple, questions may arise as to whether in acting “on behalf of their child” a parent is acting “in the child’s best interest.” Treatment planning also brings its own set of considerations. For example, in the pediatric population, children are developing and changing. Their medical and communicative status must be monitored as a function of growth and development or lack thereof. As children change or present with additional challenges, modifications in treatment may need to occur or new technology may need to be introduced. Issues between caregivers and care providers on how to proceed may arise and need to be resolved. Service delivery in natural environments (home, daycare centers, preschools, schools) has its set of considerations. For example, issues may have to be resolved regarding safety, availability of emergency help, transition from one setting to another, or consistency of techniques between settings (e.g., home and school) and caregivers.

Riquelme (2004) explored dysphagia services with regard to the SLP’s cultural competence. He wrote that decisions are in- fluenced by client/family dietary rules and conventions, concepts of wellness, concepts of time, feelings about types of medical intervention, access to medical care, family rules for decision making, beliefs about medicine, and the primary treatment pro- vider used by the family. All have potential issues of ethical significance in dysphagia treatment. Sensitivity and respect for what the client brings to the situation is critical. ASHA’s Issues in Ethics statement—Cultural Competence (ASHA, 2005a)— provides an expanded discussion of cultural competence, ethics, and the need for the practitioner to recognize one’s own cultural and life experience as well as that of the client in planning and delivering ethically responsible services.

Case Scenarios

Ethical issues, dilemmas, and debates usually arise because of circumstances and relationships surrounding the people involved, such as issues of attitude, competence, education, and expectations. Ethical issues also arise out of circumstances involving workplace systems, workplace operating procedures, legal mandates, regulatory requirements, reimbursement streams, employer expectations, and site-specific planning and preparedness or lack thereof. When considering ethical issues in providing services to individuals with dysphagia, instructive guidance comes through the presentation of

168 LANGUAGE, SPEECH, AND HEARING SERVICES IN SCHOOLS • Vol. 39 • 167–176 • April 2008

case studies. By reviewing and analyzing case scenarios, it becomes clear that there may not be a “single” or “right” or “wrong” answer to the ethical questions posed; rather, there may be several ethically responsive alternatives to handling a situation. As Groher stated, “each individual presents with a unique set of medical circumstances and a unique set of beliefs as they relate to their medical care” (1994, p. 11). Groher continued by pointing out that the complexity of interactions between the persons involved (i.e., client, physician, parent, family members, professionals, other team members) rarely results in the same decision when identical dysphagia scenarios are presented (1994). Several case studies are available (Brady, 1996a, 1996b, 1997a, 1997b, 1998b, 1999, 2000, 2001; Goldsmith, 1999; Lefton-Greif, 2001; Lefton-Greif & Arvedson, 1997; Pittenger, 1997; Sharp & Genesen, 1996; Strand, 1995). Table 1 depicts a representative example of topics of ethical interest in dysphagia that are covered in these case scenarios.

One case study (Brady, 2001) will be elaborated on primarily because it takes place in a school setting. It is demonstrative of the dynamic between parent, teacher, SLP, and physician. This sce- nario is illustrative of ethical issues related to autonomy, in terms of respecting the wishes of the child’s parent/decision maker; beneficence, in terms of the SLP’s need to promote what is believed to be good for the child; and nonmaleficence, in terms of the SLP’s concern that oral feeding may cause harm. In Brady’s opinion, the scenario represents “one of the most challenging ethical dilemmas speech-language pathologists face—when the expressed preference of a parent for their child is in direct opposition to what is (at least initially) seen to be the most ‘beneficent’ plan of care” (p. 20).