Karen E. Faith 2017-09-30 07:30:45
Although Angela* is three years old, her diet consists of milk and limited purées. Her paediatrician suspects she has symptoms related to avoidant/restrictive food intake disorder (ARFID). He makes a referral to a community-based occupational therapist (OT) who is part of a specialized clinic treating children with sensory and motor issues. ARFID is a relatively new diagnosis with symptoms that may include “significant restrictive eating leading to weight loss or lack of weight gain, nutritional deficiencies, reliance on tube feeding or oral nutritional supplements and/or disturbances in psychosocial functioning.” A proportion of children diagnosed with ARFID are found to have sensory issues. Angela’s physician is concerned about whether Angela’s nutritional requirements are being met, and about her weight loss and delayed speech. Following an assessment, the OT concludes that Angela has sensory sensitivities that cause anxiety and refusal of any new foods. The clinic’s speech–language pathologist agrees that Angela has significant oral motor issues affecting speech and food management in the mouth. During the assessment, Angela’s mother asks whether Angela should be tube fed or, as her husband had suggested, be allowed to go hungry until she has no other choice but to eat solid food. She explains that she and her husband are very stressed by this situation and have been at odds about Angela’s problems. Angela’s father is not fully supportive of this referral to the clinic. The parents’ role As is frequently the case in paediatric care, parents must act as surrogate decision-makers in matters of consent. The OT knows that the recommended treatment for Angela’s problems may be uncomfortable, coercive and even frightening for her. Intrusive measures such as the OT probing Angela’s mouth and introducing objects orally to help strengthen the muscles needed for chewing and speech will be employed. Angela will receive benefits, but will also face burdens from this treatment. The OT has the task of deciding what is clinically required and ethically acceptable in treating Angela, and how to manage consent. The OT worries that the parents are distressed and in conflict, and that they might have unrealistic expectations for immediate improvements, given Angela’s oral motor function, her avoidant behaviour and sensory difficulties. Perhaps the biggest challenges the OT faces are to build a therapeutic relationship with Angela and to earn the trust of both parents. Ethics experts favour a “triadic” model for decision-making in the treatment of children. This approach respects the “complex nature of parent–child relationships, the dependence and vulnerability of the child and the child’s developing capacity for decision-making.” If a health professional proposing treatment determines that a child lacks capacity for consent, legal guidelines require that consent be obtained from the child’s legal guardian. Most clinicians endeavor to gain the child’s assent towards treatment consistent with the principle of beneficence. Assent would involve giving Angela information in a way that is suited to her age and ability to understand. In gaining her young client’s cooperation and engaging her as an informed and active participant in her treatment, the OT hopes to reduce Angela’s distress. Building trust Initially, the OT worked towards building trust with Angela while engaging both parents in a process of consent. She scheduled a meeting in which the treatment approach was outlined to Angela’s parents in writing. She described the risks and benefits of the recommended approach, and explained that some of these interventions will feel intrusive or coercive to their daughter. The father wanted to discuss the option of allowing Angela to go hungry until such time as she has no other choice but to eat solid food. The OT explained how, as a regulated health professional, she must ensure that treatment will provide the desired health benefits while reducing or avoiding risk or harm. From an ethics perspective, the risks must be minimized and the likely benefits must outweigh both the risks and harm to the client. Although the OT was familiar with the method described by Angela’s father, her opinion was that it was not suited for Angela. Angela’s inability to chew and safely swallow solid food at this point meant that Angela would be at risk of aspirating. In addition, she felt it was uncertain how much this approach might compromise the child’s trust in her relationship with parents and in the therapeutic process. The OT maintained that harm of this approach would likely outweigh the possible benefits. While acknowledging the underlying conflict between the parents, the OT emphasized to them that informed consent for Angela’s treatment would require their agreement. Eventually, the parents provided their proxy consent. Using child-centred methods In her early sessions with the OT, Angela refused to allow the OT’s hands or oral motor tools to come close to her face. She refused many times, which is not uncommon. The OT had to determine the best clinical approach to the situation while maintaining her ethical obligations regarding autonomy and beneficence. Consistent with play-based methodology, the OT employed techniques such as placing the objects on top of her own head and throwing the objects in the air in a way that engaged Angela’s enjoyment of play. Eventually Angela tolerated objects on her face, was able then to kiss them and allow them to be placed in her mouth. The OT respectfully acknowledged Angela’s refusals. Through play, she found a way to diminish Angela’s fears and engage her cooperation in the treatment process. By using child-centred techniques, the OT hoped to reduce the burden of fear or anxiety that Angela might experience. Angela’s parents attended the therapy sessions, observing and participating. The OT explained that it was imperative that both parents attend equally and follow through with the home-based strategies. The father’s initial reticence decreased as he saw his daughter progress to eating solid food. Progress in treatment was closely tied to the level of trust that Angela and her parents invested in the therapeutic relationship. Earning trust In the treatment of children, health care providers must not only ensure that the best methods are used to address the child’s health needs, but also employ child-centred treatment approaches and communication skills. To earn the child’s trust in the therapeutic relationship, health care providers should seek a holistic understanding of the child, her family and her experience of illness. Clinicians working with children must carefully balance the clinical considerations with ethical duties regarding consent. Potential harm or risks to the child should not outweigh the desired and likely benefits to be derived through treatment. To balance these obligations, clinicians need to have appropriate communication skills, ethics insight and recognition that the parent–child relationship is central to not only establishing a relationship of trust, but to the ultimate success of the treatment process talking POINTS 1) Perhaps the biggest challenge health care providers face in treating children is building a therapeutic relationship with the child while earning the parents’ trust. 2) In accordance with provincial health care legislation, the appropriate surrogate decision-maker must provide consent for treatment on behalf of a child who is found incapable of consenting. This does not pertain to a situation in which emergency medical care is urgently required. 3) Clinicians working with children must carefully balance clinical considerations with ethical duties, which requires ensuring that harms or risks are ethically acceptable and do not outweigh the likely benefits of treatment. References available upon request. Karen Faith BSW, MEd, MSc, is a bioethics consultant, writer, public speaker and member of the Joint Centre for Bioethics at the University of Toronto. She has served on the staff of the Sunnybrook Health Sciences Centre, and currently works with regional and community-based health care organizations. Karen is Jessica Faith’s mother. Jessica B. Faith BSc OT, OT Reg (Ont), is assistant director at Ellen Yack and Associates Paediatric Therapy Services. Jessica provides treatment services for children, as well as training for parents and professionals. Her clinical focus is on disorders relating to autism spectrum, sensory processing, developmental coordination, learning disabilities, feeding challenges and self-regulation. *The scenario described reflects actual events. All names and identifiable information have been changed to protect the privacy of the client and her family.
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