When Noncompliance With Cancer Treatment Isn’t Really Noncompliance

In hindsight, with all the puzzle pieces laid out in front of us, I wonder how we missed it. But a couple of things kept us from putting it together. It started with our presumption that Jill’s noncompliance was a given. It was because of her quirky personality, her flaky and free spirit attitude, she didn’t want to accept the seriousness of her diagnosis. But it was her ability to seem like she had it together that truly fooled us. She recognized people, asked questions about her treatment plan, joked with others. She did things that made it seem like the reason she missed treatment was explainable.

But our explanations on her behalf piled up too, until they were so high we could not ignore them: she was in denial, she was depressed, she was overwhelmed, she was alone and trying to manage everything herself. She is noncompliant.

Our presumptions and explanations made sense until the day she showed up disheveled and out of sorts. Then those presumptions and explanations no longer made sense. Turned out the actual cause of her noncompliance was brain metastases. Although brain mets are not uncommon with some cancers, it was not expected with hers. Because of the brain mets she lacked capacity. Her lack of capacity meant that even though she seemed to be fully functional she was not.

DISCUSSION

Capacity is an often misunderstood term. Many confuse it with competency. Competency is a legal definition while capacity is, literally, an in the moment assessment. The four components of assessing capacity are based on ability:

• The ability to make a choice about treatment,

• The ability to understand relevant information,

• The ability to appreciate the situation and its consequences, and

• The ability to reason¹ (Table 1).

TABLE 1. Myths About Decision-Making Capacity1¹

Decision-making capacity and legal competency are the same.

Lack of decision-making capacity can be presumed when patients go against medical advice.

There is no need to assess decision-making capacity unless patients go against medical advice.

Decision-making capacity is an “all or nothing” phenomenon.

Cognitive impairment equals lack of decision-making capacity

Lack of decision-making capacity is a permanent condition.

Patients who have not been given relevant and consistent information about their treatment lack decision-making capacity.

Patients with certain psychiatric disorders lack decision-making capacity.

Patients who are involuntarily committed lack decision-making capacity.

Only mental health experts can assess decision-making capacity.

Much like informed consent, there is not a legal burden of proof, just an assessment of a person’s ability to understand the consequences of accepting or rejecting treatment. Rejecting treatment itself is not deemed a lack of capacity, though it is often confused as such.

Not all issues of noncompliance are related to capacity, indeed many are not. But thinking of noncompliance “outside” the box was a critical element to consider. Noncompliance is often linked to denial. Surmising that denial leads to noncompliance, as if both denial and noncompliance are their own diagnosis, is easy.

Reading through many history and physicals (H&Ps) on patients will reveal a comment under Impressions: “pt in denial or non compliant.” As if, once identified, noncompliance does not require further investigation. It cannot be identified the way high blood pressure or diabetes is. Once those are identified the symptoms are addressed. But when noncompliance is identified the rationale behind it may be ignored, indeed when we cannot make sense of noncompliance we may stop there. All is over and done once it is labeled. Often that is exactly what happens.

Noncompliance is an easy explanation when a patient does not follow our very carefully researched treatment plans, does not keep appointments, questions or disregards instructions, easier still if it is first attributed to a case of denial. Of course, we conclude, the reason they do not follow our instructions must be because of noncompliance.

But what if a patient’s noncompliance is instead a symptom of something else?