Compulsory treatment for diabetes
We often have to contemplate compulsory treatment in lifesaving situations, such as the amputation of gangrenous limbs in patients lacking capacity. But dealing with the necessity of imposing daily treatment is paradoxically far more onerous, arguably impractical.
In a case heard in the Court of Protection earlier this year JJ, a 24 year old man living with his parents, had presented for the first time in May with what proved to be type one diabetes. The court found that he had been a loving and engaging young man who had in his past wanted to ‘look top to bottom’ at his diagnosis of dyslexia, but gave no other hint of any medical history.
At presentation, JJ had received emergency treatment including intravenous insulin and been discharged the following day, with a plan for education and support in the community. Regrettably he refused to take his daily insulin at home and re-presented two weeks later, mid-May, with ketoacidosis. Despite admission, he declined treatment. No mention is made in the judgement as to the state of his capacity at this point but restraint was employed to administer insulin.
JJ found this episode ‘extremely traumatic’, leading to a severe adjustment disorder. This manifested as acute anxiety, stress, hopelessness and sadness, leading him to respond in a disproportionately negative way to his diabetic diagnosis.
Now distrustful of medical staff and concerned about constraints to his liberty, JJ was nevertheless successfully treated, recuperating in the community. But following another rapid metabolic deterioration and significant weight loss he was admitted two months later. He would accept only sporadic doses of subcutaneous rapid acting insulin; he would permit no other treatment for his persistent metabolic derangement. This prompted the court application which was supported by his parents, since his doctors were unable to provide what they regarded as optimal management.
Naturally, the court first needed to establish whether the presumption of JJ’s capacity was rebutted. Liaison psychiatric evidence was adduced that an adjustment disorder met the criterion for a disorder of the mind and brain recognised by the Mental Capacity Act as the ‘diagnostic’ element of the test for incapacity. As to the functional element, the court was told that the manifestations of the adjustment disorder prevented JJ from weighing up the necessary information to make decisions about the treatment of his diabetes, including the consequences of consent or refusal.
On this basis, the judge found that JJ lacked capacity to make decisions relating to his medical treatment. But at the same time, that compulsory treatment, entailing restraint, would lead to further distress. The judge explored the feasibility of JJ participating in the hearing by telephone, offering him the possibility to do so shortly after he accepted a subcutaneous insulin dose; JJ did not feel able to join the hearing in this way.
A care plan for reasonable treatment of ketoacidosis was set before the court, which included necessary and proportionate restraint. JJ’s parents hoped that following this judicial scrutiny, their son would be more accepting of the plan. Provision was made for the involvement of a psychiatrist specialising in diabetology (and, presumably, adjustment disorder) that would start within one week of the judgement being handed down. The court nonetheless implicitly acknowledged the difficulties and uncertainties the future held for JJ with insulin-dependent diabetes. All involved hoped that if he could ‘fully understand, investigate, and familiarise himself…and perhaps with most difficulty, accept his diabetes’, he might maintain a stable life in his community.
This case starkly exposes the limitations of the law. It is one thing to compel a person terrified of treatment to endure it in hospital whilst he is temporarily incapacitated. But aside from treatment of a mental illness, there is only a modest prospect of enforcing the daily grind of regular daily treatment of any of the countless chronic physical illnesses should the adult patient actively refuse to comply, whether or not they have capacity. It is a tribute to the cajolement of innumerable companions or carers that for most of the time, whilst patients may grumble, they acquiesce to medication at home.
Although anathema to clinicians who strive to treat their patients well, we have little or no influence over their compliance. Litigation in this context is highly unusual.
Department of clinical law, December 2019