Academy Society Spotlight Bioethics in Pediatric O&P: Assent
April 2021 Issue
A few months ago, I treated a bright and mature 12-year-old girl with adolescent idiopathic scoliosis (AIS). She and her parents were there to discuss the differences in a Rigo-style TLSO versus a nighttime Providence TLSO. What was unusual was that the young girl was given sole decision-making power about which TLSO she would wear. The parents explained to me that they wanted her to have all the medical information so she could make an informed decision. While we had a pleasant 45-minute discussion about the two orthoses, I still wonder if she fully understood the decision she was left to make on her own.
Another 12-year-old patient I met recently had a hemipelvectomy and contralateral transfemoral-level limb loss. To make matters more complicated, she also presented with bilateral, transradial limb loss. She had a well-fitting hemipelvectomy prosthesis and a two-year-old transfemoral-level prosthesis. Even though the girl hadn't used the prostheses often, her mother wanted her child to get new prostheses to have the potential to ambulate. Based on previous history, this was all family-driven and not patient-driven.
In each scenario, who should make the medical decision plan? Is it the 12-year-old? Is it the parent or guardian? Where do we fit in as medical professionals? What if these scenarios were the same except with a seven-year old? Or a 15-year-old?
In 1995, the American Academy of Pediatrics published a piece in the Journal of Pediatrics titled "Informed consent, parental permission and assent in pediatric practice." It states, "Decision-making involving the healthcare of young patients should flow from responsibility shared by physicians and parents. Practitioners should seek the informed permission of parents before medical interventions."1 Typically, in O&P, this informed permission has already been taken care of by the referring physician.
However, the article also discusses involving older children and adolescents in the decision-making process: "We should not necessarily treat children as rational, autonomous decision makers, but we should seek assent from the patient." How many times have we had an adolescent patient not want to wear an AFO or a scoliosis brace because of fear of judgment from his or her peers? As healthcare providers, we should empower children to the extent of their capacity.
The Journal of Pediatrics article suggests assent should include the following elements:1
- Helping the patient achieve a developmentally appropriate awareness of the nature of his or her condition.
- Telling the patient what he or she can expect with tests and treatment(s).
- Making a clinical assessment of the patient's understanding of the situation and the factors influencing how he or she is responding (including whether there is inappropriate pressure to accept testing or therapy).
- Soliciting an expression of the patient's willingness to accept the proposed care. Regarding this final point, we note that no one should solicit a patient's views without intending to weigh them seriously. In situations in which the patient will have to receive medical care despite his or her objection, the patient should be told that fact and should not be deceived.
Especially in the evaluation/measurement appointment for a patient with AIS, a significant portion of the appointment time is spent gaining assent from the patient. A physician may have provided the prescription and referral, and the parents may already agree with the treatment plan since they decided to schedule the appointment to see an orthotist, but the adolescent patient may still be quite skeptical.
Thus, within our evaluation, there are a few factors I find significant. I want to ensure the patient (and family) understands the condition of scoliosis. How much do they know? What do they perceive are the short-term and long-term effects of the condition? We also should inform the patient and the family that treatment success with a scoliosis TLSO includes preventing progression of the curvature, not long-term correction. With a scoliosis TLSO, the patient should know how many hours a day he or she is prescribed to wear the orthosis, as well as the indicators for us to know when we can end orthotic treatment, including post-menarche status, Risser level, and Sanders scores. Additionally, we should spend time talking about compliance being a factor in success. According to Katz and Herring et al., brace wear control of curve progression confirms that total wear time is correlated with the lack of curve progression in AIS.2 By providing this information, we can empower and obtain assent from our pediatric patients.
In the first scoliosis example, it was clear I already had assent in treating this patient with a scoliosis TLSO. The only question was between two very different versions of treatment. While many within the O&P profession may have a strong opinion on the Rigo or Providence brace based on previous experience and practice, most will agree that there is some gray area between various orthotic treatment methods. Based on the patient's age and presentation, I could not definitively say one orthosis was better than the other. I provided as much information I could about the two differing treatment options to her and her family. She wanted time to think about such options and we scheduled an appointment for her to come back in a couple of weeks once she made her decision.
As for the patient with limb loss, the decision-making process was parent-driven when she was younger. The child went through the process of the castings, diagnostic fittings, dynamic fittings, definitive fitting, and countless physical therapy appointments to reach a point of independent ambulation. All of this was done when she was already independent through usage of manual wheelchair and would zip up and down the hallways in her wheelchair without hesitation.
When I last saw her, it was clear she had not assented to treatment with prostheses. She was well aware of her condition and the expectations and process of being treated with prostheses. During this appointment, we discussed the benefits of prosthesis usage, and we discussed the benefits of wheelchair usage. In the end, the family was made more aware of reasons she did not want to wear prostheses and considered her opinions more openly.
When treating pediatric patients, whether they are younger or older, we need to consider involving them in the decision-making process. While younger patients may only be provided choices about the transfer pattern for an orthosis or the fabric for a prosthesis, in a way, this is a small step toward gaining assent. On the other hand, adolescents should be met at their level of maturity and understanding. In a talk given by Douglas Diekema, MD, the director of education at the Treuman Katz Center for Pediatric Bioethics, he suggests that time is one of the best tools for decision-making. Providing time during and after the appointment for consideration of the options will help in gaining assent from your pediatric patients, and in turn, lead to better treatment outcomes.3
Scott Thach, MSPO, CPO/LO, is the chair of the Spinal Orthotics Society and a member of Craniofacial Society of the American Academy of Orthotists and Prosthetists (the Academy) and a prosthetist/orthotist with Children's Healthcare of Atlanta.
Academy Society Spotlight is a presentation of clinical content by the Societies of the Academy in partnership with The O&P EDGE.
1. American Academy of Pediatrics Committee on Bioethics. 1995. Informed consent, parental permission and assent in pediatric practice. Pediatrics 95(2):314-17.
2. Katz, D., A. Herring, et al. 2010. Brace wear control of curve progression in adolescent idiopathic scoliosis. Journal of Bone and Joint Surgery 92(6):1343-52.
3. Diekema, D. 2020. Medical Decision-Making in Pediatrics: When Parents and Providers Disagree. Presented at Ethics Grand Rounds, via Webex hosted at Children's Healthcare of Atlanta.