MDU member Dr Dan Owens presents a case study that raises questions around the treatment and management of a young patient.
A teenager not adhering to treatment is a common scenario facing clinicians who care for adolescents. The evolving nature of capacity to refuse treatment is a familiar issue, but how does this relate to poor treatment adherence? More specifically, what steps can the clinician take to make sure they practice in the adolescent's best interests while also respecting their right to make autonomous choices?
The following fictitious example is a potential case that highlights some of the dilemmas a clinician may face when treating teenagers who are not adhering to treatment.
A patient in her mid-20s with type 1 diabetes brought a claim against her former paediatrician. She was under the care of the paediatrician between her diagnosis at age 11 and 17 years, at which point she transitioned to the adult diabetic services.
Throughout her teenage years there were problems with adherence to her insulin regime, frequently presenting in diabetic ketoacidosis because of not taking her insulin. Efforts were made to educate the patient about diabetes and to engage her family and school in the process, and referrals were made to the mental health team for psychological support and social services, but adherence nevertheless remained poor. The patient subsequently developed diabetic retinopathy and nephropathy, which was accelerated by poor adherence to medication.
There were two elements to the claim. Firstly, it was alleged that the efforts at educating the patient were insufficient and not appropriate to her age and needs. Secondly, it was claimed that during her teenage years the patient did not possess the capacity to refuse treatment and that her wishes should have been overridden and treatment enforced.
Dr Dan Owens BM MRPCH
Dan qualified from the University of Southampton in 2011 and is currently a paediatric registrar in the Wessex region.
Medico-legal adviser Dr Beth Durrell Potter offers a commentary on the above case.
Dr Owens presents an interesting case study regarding a patient who had not adhered well to prescribed insulin during her teens, and had suffered complications as a result.
It can be difficult and frustrating for clinicians when patients seem to be making unwise decisions. In essence, an adult with capacity has the absolute right to refuse treatment under the Mental Capacity Act 2005. However, if there are adverse consequences from the patient's decision, questions may be asked (by the family, the coroner or others) about their capacity and whether they had all the necessary information to make the decision.
In this particular case, the patient was not adhering to treatment during her teens. At the age of 16, a young person is considered to have the mental capacity to consent to medical treatment, but the age at which a young person's refusal of treatment becomes valid remains an uncertain area of law.
In many ways the legal position is not the central factor in such cases - even where an adolescent might not have the maturity to take decisions about their care, there may be no practicable way of enforcing them to adhere to treatment.
This patient's parents may not have been aware that she wasn't fully adhering to her treatment, as adolescents will often manage their own insulin and meals and spend much of the day away from the home. Nevertheless, it remains important to ensure that the maturity of the child and their capacity to make decisions is assessed, and that strategies to encourage engagement with treatment take this into account.
The treating team for this patient had made attempts to educate the patient and family, but the patient claims that this was insufficient. When allegations like this are made, careful documentation of the attempts made by the medical staff and other members of the multidisciplinary team to educate and support the patient can be helpful in constructing a defence.
This could include what strategies were used to maximise the patients understanding of the information provided, while details of what written information or contacts with support groups has been provided can also be helpful.
It can be difficult to prove that a meaningful discussion with the patient took place but strategies such as documenting each of the risks discussed with the patient, and the patient's response, can show that care was taken to explain the consequences of non-adherence. I would also encourage the doctor to ensure that the patient's GP is aware of the risks and the lack of adherence to treatment.
In rare cases you might face circumstances where a child or young person lacks the capacity to consent to treatment, and the parents appear not to be acting in the best interests of their child. Should those arise, we would advise members to contact the MDU and the safeguarding team at their trust to assess how to proceed.
Normally, where there is a difference of opinion between a young person, their parents and the treating medical team, a meeting to discuss the situation and come up with a plan in the young person's best interests can help resolve matters without recourse to the courts. It may be helpful to include the hospital team, GP, the school nurse and social worker if applicable.
Careful records of those discussions and the views of those present about the treatment options and the child's maturity and best interests is of course essential. Where an agreement can't be reached, and the parents do not appear to be acting in their child's best interests, it may be necessary to seek advice from the court of protection. Ultimately, the trust's solicitors might need to be involved if it is necessary to authorise treatment refused by the child and the parents.