Ethics Dialogue: Spelling to Communicate – Reply by Mary Jane Weiss

Abstract

Quigley and colleagues (2024, Behavior Analysis in Practice, https://doi.org/10.1007/s40617-024-01001-4) described a treatment recommendation scenario within a multi-disciplinary team setting for an adult with a developmental disability. The authors presented the information in a standard format to share how the involved parties identified, evaluated, and responded to the recommendation based upon their understanding of ethical decision-making. In this response, the right to effective treatment is emphasized as a primary obligation of the treatment team. The review of the procedure reveals that the intended intervention is one that is both unproven to be effective and similar to an intervention known to be harmful. Multiple available resources support the need to avoid the use of this intervention. Implications and suggestions for decision-making in clinical contexts are highlighted.

A Note from Matthew T. Brodhead, Ph.D., Guest Editor: The following case study and commentaries represent a fresh, yet stark, departure from papers traditionally published in Behavior Analysis in Practice. Unlike traditional peer review where a handling editor may solicit feedback from one or more reviewers, I assumed full responsibility for the review of this paper and did not solicit the views or opinions of anyone who was not masked to the paper’s authors. Given the exploratory nature of the format of this case study and accompanying commentaries, Behavior Analysis in Practice has yet to establish formal guidelines or parameters about whether or not this paper should be categorized as “peer reviewed scholarship” in the traditional sense. The applied value and benefit of this paper to the field of Applied Behavior Analysis are quite clear. Further, I firmly believe this paper certainly qualifies as academic scholarship and this note, alone, should not detract the reader from their willingness to appraise and evaluate this paper as such. That said, how this paper should be represented by readers or future authors (e.g., referring to it as “peer reviewed scholarship”) or reported on an author’s annual evaluations or vitae are less clear.

Describe Antecedent Conditions that Helped or Hindered the Resolution of the Situation

A number of factors seem to have placed this organization in a position of strength in managing this challenge. First, there was a clear organizational structure that facilitated the QIDP approaching the supervisor and expressing their concerns. Second, training had clearly prepared the team to identify interventions that may lack evidence or pose risk. These organizational structures and procedures facilitated an early dialogue within the organization about the intervention and enabled rapid action. The value placed on evidence-based practice was clearly paramount in the mind of all parties and facilitated the discussion of appropriate steps at every level of the organization.

Describe Any Factors that Might Improve the Ability to Detect the Situation Sooner

It appears that this was an immediately recognized issue, and there were no issues associated with delayed reaction. As noted above, the organization had several core features that assisted in a speedy response; the organizational commitment to evidence-based practice served as a compass for the QIDP in alerting their supervisor and for the team in continuing the discussion. The pre-existing training in the nature of evidence-based practice set the occasion for identifying this issue early in the chain.

Describe Additional Considerations for Immediate Reporting

There was not a need for immediate reporting. At times, an urgent issue requires immediate action to ensure the health and safety of all individuals involved. This issue did not meet those standards. Nevertheless, the issue was concerning and warranted swift review. The professionals involved all understood the clinical ramifications of the potential intervention and acted to ensure immediate action.

Describe Additional Factors for Information Gathering Given the Situation

I would be interested in the individual who raised this issue, and in the agency they represent. Given how many agencies share clients, and given how human service organizations tend to serve many similar clients, I might wonder about whether this represents a broader concern. Might this clinician be suggesting this in other contexts with other clients? Is this organization also broadly in favor of this approach? These concerns would be intensified by the actual intervention suggested, as it is known to be ineffective and has been associated with documented harm. My curiosity about these matters would support reaching out to the individual and potentially to the organization, as the dialogue continued.

Describe Any Additional Principles or Codes Related to the Situation. From your Perspective, Describe what Principles and Codes are Most Important and Why

From my perspective, this is a serious issue because of the nature of the intervention. Spelling to communicate is a variant of Facilitated Communication; several permutations of the approach abound, and this is a current variant (Wombles, 2014). FC is not simply a procedure that lacks evidence. FC is a procedure that has been debunked in scientific studies, has been shown to cause harm, removes the individual’s autonomy in communication, and has the potential to create false reality for stakeholders involved with the client (ABAI, 1995; ASHA, 2018a, 2018b; Jacobson et al., 1995; Lof, 2011).

Our Ethics Code (BACB, 2020) provides tremendous grounding in approaching this issue. Every core principle is instructive, and multiple standards support and direct the course of action. Most notably, the first Core Principle, to Benefit Others, is of primary relevance. Under this principle, behavior analysts are charged with “protecting the welfare and rights of clients above all others.” Furthermore, behavior analysts are tasked with “effectively and respectfully collaborating in the best interests of those with whom they work and always placing clients rights first. In this context, there is no doubt that the client would be placed in jeopardy if the intervention was added. Furthermore, the behavior analyst will be mindful of the obligation to collaborate in the context of the do no harm mandate. In addition, the second Principle, to Treat Others with Compassion, Dignity and Respect, is also equally relevant. The Code states behavior analysts “behave toward others with compassion, dignity, and respect.” Facilitated Communication (and similar approaches) undermine the capacity of the individual to communicate and effectively remove their agency in communication (Chan and Nankervis, 2014; United Nations, 1948, 2006). The American Speech and Hearing Association has position statements on both Facilitated Communication (2018) and Rapid Prompting Method (2018) which clearly outline these issues. Essentially, the use of such procedures can be viewed as a violation of human rights, as the communications assumed to be from the individual are, in fact, not authored by the individual. This can be a complex circumstance to navigate. Under the principle Treating others with Compassion, Dignity, and Respect, The Code also notes that there is an obligation to acknowledge “that personal choice in service delivery is important by providing clients and stakeholders with needed information to make informed choices about services.” First, this emphasizes and acknowledges the client’s view in selecting treatments, which is paramount, and which must be incorporated. Second, it points out to us what our obligation is in this context. This principle supports the action of assembling relevant scholarly information and professional practice guidelines to share with the internal team and with the professional who recommended the intervention. This a due diligence action; in the interests of the client, every effort is made to empower teams, stakeholders, and clients to make informed choices about care.

The two remaining core principles also apply. The third principle, Behave with Integrity, instructs behavior analysts to “actively work to create professional environments that uphold the core principles and standards of the Code.” This principle requires us to create and continuously shape professional conduct in our workplaces and in our professional interactions. The fourth principle, Ensure Competence, states that behavior analysts are to remain “knowledgeable and current about interventions (including pseudoscience) that may exist in their practice areas and pose a risk of harm to clients.” This mandate clearly applies in the current scenario and supports the behavior analyst’s prioritizing this discussion.

A variety of code standards also apply and are relevant in considering this challenge.

• 1.05 Practicing within scope of competence

• 1.10 Awareness of biases and challenges

• 2.01 Providing effective treatment

• 2.09 Involving clients and stakeholders

• 2.10 Collaborating with colleagues

• 3.01 Responsibility to clients

• 3.02 Identifying stakeholders

• 3.12 Advocating for appropriate services

• 4.04 Accountability in supervision

• 4.06 Providing supervision and training

Overall, all of these code sections support due diligence in addressing these issues. Section one standards remind us to be aware of our own biases and any potential limitations in our ability to assess or navigate this challenge. Standards in sections two and three remind us of the primary responsibilities we have to ensure that treatment is effective and evidence-based. Furthermore, this section underscores our obligations to identify stakeholders, work collaboratively with all team members, in the context of effective, evidence-based intervention. Section four standards underscore the responsibilities we have to supervisees and trainees, who require guidance and for whose work we are ultimately held accountable.

What are Other Options for Action? What Would you Choose and Why?

There are essentially three possible courses of action. The team could remain silent and potentially allow this to occur, the team could work to block the intervention from being implemented but not address the treatment risk per se, or the team could work to both block the intervention from implementation and work to inform the team about available evidence. Unquestionably, I would choose the third option, which includes informing the team about available evidence.

This not a benign intervention, and requires the behavior analyst to share information about the lack of evidence and about the risk of harm. A primary focus should be on ensuring that the team is aware of existing evidence and professional recommendations regarding the proposed practice. In the case of an intervention that bears resemblance to FC and RPM, it is helpful to examine resources developed for those interventions. In this case, several position statements exist from several professions. ABAI (1995) has a position on Facilitated Communication. The American Speech and Hearing Association (2018a, 2018b) has position statements on both Facilitated Communication and Rapid Prompting Method. The American Academy of Pediatrics (1998) also has a position statement on Facilitated Communication. The language in these position statements is unequivocal; there is no ambiguity about the evidence or the risks. For example, the ASHA Position on Facilitated Communication, states:

SLPs have a responsibility to inform and warn clients, family members, caregivers, teachers, administrators, and other professionals who are using or are considering using FC that.

1. decades of scientific research on FC have established with confidence that FC is not a valid form of communication;

2. messages produced using FC do not reflect the communication of the person with a disability;

3. FC does not provide access to communication;

4. the use of FC is associated with several harms to individuals with disabilities as well as their family members or teachers; and

5. ASHA’s position on FC is that it should not be used.

One advantage of using position statements from multiple fields is that it underscores the agreement across professions regarding this particular intervention. There is deep consensus on the ineffectiveness and potential harm associated with variants of Facilitated Communication, and the warnings issued across professions are stern. Sharing the interdisciplinary stance on FC may help the professionals, family members, and other individuals involved to see the breadth and depth of concerns that have been expressed.

In addition to the position statements from professional guild organizations, there are other resources on evidence-based practice that can be consulted to see how the intervention has been categorized by expert panels. Several of these resources are commonly cited in reviews of interventions, such as the National Standards Project (National Autism Center, 2015). Facilitated Communication is listed as an unestablished intervention in that resource, indicating that there is no scientific support for its utility/effectiveness. One resource that is very user-friendly is Autism New Jersey’s Treatment Guidelines (https://www.autismnj.org/understanding-autism/treatment/).This resource divides interventions into red light, yellow light, and green light categories. Red light interventions are those that are proven ineffective or associated with harm, and are to be avoided. The list of red light procedures is short, but both FC and RPM are on the red light list. This is a wonderful resource for several reasons. The simple format is clearly organized to assist families and providers in understanding how certain procedures have been evaluated by experts and which interventions merit consideration/pursuit. Most importantly, it serves as a repository of information on procedures that should not be considered or pursued, based on available evidence, including documented harm.

Other resources that can help in this regard include decision-making models. Several exist within the behavior analytic profession. Some decision-making aides have focused on the complexity of the issue. Bailey and Burch’s (2016) white water rafting analogy helps the practitioner to evaluate the severity of the ethical challenge, by examining whether there are ethical code violations, rights violations, legal issues, organizational issues, or personal risk. This rubric also poses a question about scope of authority, helping the practitioner to identify the need for additional guidance in the process of resolving the matter. If a practitioner were to look at this dilemma in the context of the rapids analogy, they would quickly surmise that it is very serious indeed, and that supervisory notification is essential. Brodhead’s (2015) model is a very relevant resource here, as it focuses on interprofessional collaboration contexts and can be used to navigate the suggestion of a non-evidence-based intervention. Brodhead’s model begins with a question about client safety. It then asks whether the clinician is familiar with the treatment. If the practitioner is not familiar with the treatment, they begin the process of familiarizing themselves with the treatment and safety is then reassessed. Next, the practitioner assesses the extent to which the procedure can be translated into behavior analytic principles and whether it might interfere with goals. Ultimately, the practitioner decides whether or not the treatment needs to be addressed. In other words, one weighs the logistical and interpersonal issues with the assessment of risk, and this helps guide the decisions about how to proceed with raising the issue within the team. In this case, the practitioner would clearly identify the inability to translate the intervention into behavioral principles and would decide that the issue must be addressed with the team. Newhouse-Oisten et al. (2017) is also a relevant resource, despite its intended purpose for collaboration with prescribing professionals regarding medical interventions. This model presents a 2 × 2 grid for analyzing the potential intervention; essentially the clinician assesses whether the proposed intervention is evidence-based or not evidence-based and then whether it is compatible or incompatible with behavior analytic interventions. In this case, it is clear that the proposed intervention is both incompatible with ABA and not evidence-based. This is the simplest cell of the 2 × 2 grid, as it suggests that the intervention should not be integrated. Several other broad-based models have been proposed to methodically analyze ethical challenges. Rosenberg and Schwartz (2019) propose a decision model that begins with “ethical radar,” or the detection of the ethical issue, followed by the identification of the issues and the codes that are applicable. It then moves the practitioner through additional steps of brainstorming solutions and the evaluation of each, considering a variety of contextual factors that should be considered in the process. Finally, it moves into implementation of the chosen alternative, followed by evaluation of the impact. In this model too, the ethical radar would signal a major issue, centered on the right to effective treatment and the use of evidence-based practices. Most recently, we also have the BACB Decision Making Model, which is now embedded into the Code (BACB, 2020). This 11-step model includes many of the steps highlighted in the other models and trees, and provides a comprehensive and systematic manner for the navigation of complex challenges. Several steps are especially helpful in this context, particularly step 6, Consult available resources. All of the resources cited here would be helpful in illuminating the path forward.

What are Recommendations for Professionals Encountering a Similar Situation? How does this Scenario Relate to Other Ethical Scenarios?

Behavior analysts may encounter circumstances where advocacy is essential and where concerns regarding evidence-based practice must be raised. Our objections must be raised in the context of respect for other professions, and our interactions should always reflect an understanding of the unique value and specialized expertise of each profession in the interdisciplinary team (LaFrance et al., 2019). It is important that concerns are raised professionally, respectfully, and in the context of the client’s needs. Interprofessional collaboration is an area of great expansion in current training (Boivin et al., 2021; Bowman et al., 2021) and is related to other identified priorities in training practitioners, including compassionate care and cultural responsiveness skills (e.g., Taylor, LeBlanc, & Nosik, 2018; LeBlanc, Taylor, & Marchese, 2019; Hughes Fong, Ficklin, & Lee, 2017; Wright, 2019).

The other crucial component skill needed for navigating this dilemma is the ethical navigation skill set. Practitioners must possess skills in signal detection (ethical radar), in identifying/pinpointing the issues precisely, in identifying relevant core principles and standards from the Code, in identifying affected parties, in analyzing contextual variables, in exploring a variety of behavioral options and their likely consequences, in selecting the best option for action, in implementing the option, in evaluating the results of the action, and in ensuring comprehensive reparative and preventative follow-up. It is certainly a complex set of skills, requiring professional judgment and nuanced interpersonal skills. Consulting resources can help guide practitioners and can provide materials for the dissemination of information to stakeholders and team members. This example illustrates the resources within our code, which is an effective compass for this example. The Core Principles, standards, and decision-making model all support the practitioner in securing the right to effective treatment.

Declarations

Conflict of Interest

I have no known conflict of interest to disclose.