"Informed Refusal" or "Non-Compliance"? Who Gets to Decide?
And, following on from my article about the DSM with regard to the Lindsay Clancy case, a Reddit comment piqued my interest: "The defendant was non-compliant with her medication." I had to confess that I was completely stumped, because of course the comment raised the question "who is the referee when it comes to informed refusal versus non-compliance?"
"I will not see CL as a patient because she is CLEARLY non-compliant with her medication." Whoa, dude, who? Me? Non-compliant? I had been on the same medication for decades, took it every morning at exactly the same time on an empty stomach, stomached that short kick of nausea twenty minutes in, and then counted the next forty until I could break my fast with a delectable cup of hot steaming tea. The seismic shift in my blood results indicated that something had changed and there was clearly a problem. But my investigations were stymied because this moron, who had neither seen nor treated me, had deemed me "non-compliant". And the result of his uninformed decree was that I, in an instant, became a proverbial medical pariah.
Informed refusal is the right to say no. One has the right to refuse medical treatment, a pill, a procedure, an operation that might save one's life. A family history that makes a particular drug feel like a threat. A fear of side effects or a quiet sense that this is not right for one's body. In theory, the doctor advises and the patient decides. However, the vocabulary, seemingly benign, does matter. Quite a lot as it turns out. An "informed" refusal is a right. Yet that same refusal labelled "non-compliant" is a defect. Thus, through no fault of my own, I am now a "defective" patient.
Human beings, perhaps through an inherent predilection for linguistic shortcuts, have allowed "non-compliance" to seep into areas of our vocabulary where its misuse can and does cause grave harm. In a custody dispute, for example, "they were non-compliant with their medication" may be offered as proof that they cannot be trusted with their children. It also appears in questions about whether someone should be held responsible for what they did ergo Lindsay Clancy. It is pronounced as a neutral clinical fact, yet carries an implication of blame, irresponsibility or wilful refusal that may not reflect, adequately or all, the full circumstances.
Was Lindsay Clancy able to understand and retain the relevant medical information, and to weigh the likely consequences of accepting or declining her prescribed treatment? This is where mental illness can make everything extremely difficult, because the condition requiring treatment may also be said to affect the patient's judgment or decision making capacity, creating two diametrically opposed scenarios.
The first scenario is the taking away of a person's autonomy simply because they have a diagnosis. But remember, a diagnosis is not the same as incapacity. Many people who are unwell make clear, thoughtful decisions every day, and overriding those decisions "for their own good" is a grave encroachment upon their basic human rights.
The second is to assume that a person's ability to make decisions is never affected by illness. Sometimes it is. A person may refuse treatment because their illness is influencing their thinking to such an extent that they are unable to make a fully free and informed choice. In those circumstances, treating the refusal as unquestionably their own decision may mean failing to provide the care and support that they require.
So what is to be done? The dilemma cannot be answered by a diagnosis or a label in a medical record. It requires a careful and honest assessment of the person, the decision, and the circumstances at that particular moment in time. A decision that is inconvenient, unusual or unwise is not necessarily a decision made without capacity. To confuse an unwise decision with a lack of capacity is to fail the very people who rely on professionals to assess them fairly.
This article first appeared on LinkedIn.