Sticks and stones ...

I begin with "dirty" and "clean" -- the less commonly examined adjectives that piqued my interest a couple of months ago. Every month or so, a clinical staff member and I co-lead an informal discussion about a recent article that has something to say about insightful, nuanced and sound practices in addiction treatment and care. The article in one of these discussions was called "Are drug treatment services only for 'thieving scumbag junkies'? Drug users and management of stigmatized identities." This article by Radcliffe and Stevens, appearing in a 2008 issue of Social Science & Medicine, explored the impact of public perceptions on access to drug treatment services. The perception at issue: that these services are primarily for those labelled as junkies and those whose drug usage has resulted in criminal behaviour.

The article's introductory section offers an interesting historically based explanation of how drug users came to be known as "junkies." Briefly: in New York City in the 1920s, individuals using heroin helped pay for the drug by sifting through industrial waste sites to retrieve salvageable, and therefore sell-able, metal items. Association with scrap or junk eventually resulted in factual statements being replaced by moral statements. In other words, statements reporting observable behaviours were replaced by statements about the person's character as presumed based on such behaviours. These people were considered tainted, polluted, dirty. Social distancing, blame and intolerance became fitting public responses. A further harmful and demeaning consequence was self-stigmatization, wherein drug users internalized criticism and deemed themselves less deserving of various citizen rights, governmental assistance and general kindness.

Almost 90 years later, lab technicians and health care clinicians often use the adjectives "dirty" and "clean" to describe urine screening results of people with substance use issues. I would guess that these adjectives are sometimes used deliberately, other times, from habit. But I doubt whether these adjectives are used in urinalyses for bladder infections, kidney stones or diabetes.

Participants at this particular discussion session agreed that clinicians and technicians should use more ethically appropriate adjectives such as "negative" or "positive" when discussing urinalysis results with those seeking assistance for substance use problems. The same thinking applies to needles used to inject illegal or abused prescription medications. Instead of talking about or documenting "clean" and "dirty" needles, recommended adjectives are "hygienic/safe" or "non-hygienic/unsafe" needles.

This is not about political correctness (a common reply of those who are privileged). It's about fairness, not causing harm and true respect. A simple way to test whether a word reflects inequitable double standards is to apply it to yourself or to more privileged groups. Consider "clean" versus "dirty" in the context of health care workers forgetting to wash their hands in between physical contact with patients. What would be their likely reactions if a colleague or supervisor said "You need to stop what you're doing right now. You're working dirty"? The reaction would probably be immediate and pronounced. The more likely comment is "You're working unsafely" or "Your practice is unhygienic."

The second adjective I want to consider is "compliant." Compliance typically refers to whether patients follow prescribed treatment regimens. It's usually binary: either the person is compliant or isn't. For many years, the ethics community criticized the use of "compliant" and "non-compliant" because they portray clients as passive recipients of clinicians' expert knowledge and authority. In recent years, many in the medical and research communities have agreed. These adjectives are antithetical to contemporary models of care, such as the recovery or sanctuary model, and to well-known ethical concepts, such as patient autonomy and human dignity. For instance, it is contradictory to link empowerment and self-determination with compliance.

Testing these words strengthens the point. If a therapist promises her client a self-administered questionnaire by e-mail, but doesn't send it until the morning of their next session, isn't the therapist non-compliant? If ward staff do not follow a hospitalized client's behaviour management plan consistently or fully, aren't they non-compliant? If such language feels harsh and dismissive of clinicians, the same applies for clients.

While "concordance" has been a suggested alternative (English teachers might like it!), "adherence" is the adjective now replacing "compliance" in the medical literature. It feels gentler, but perhaps that's only because it carries no "baggage" as yet. As Bissonnette notes, how it is defined varies considerably. Moreover in her study of 141 published articles on adherence, published in 2008 in the Journal of Advanced Nursing, no substantive differences between adherence and compliance were found.

It is a real concern - for clients, their families, clinicians and researchers alike - when clients do not take or participate in a treatment at a level that is expected to be beneficial. This applies across health care settings, not just in mental health and addictions care. Non-adherence rates are estimated at 50 per cent or higher. There are now tools for practitioners to use to help them figure out the reasons and barriers to such participation. An article by Smith and colleagues in a 2005 issue of Patient Education & Counseling offers such "verbal compliance-gaining strategies." In a 2009 issue of the Journal of Psychiatric Practice, Julius and colleagues review a large number of psychiatric articles about compliance or adherence and identify four risk areas: those relating to the medications themselves (e.g., undesirable side-effects), client psychology (e.g., level of insight), demographics (e.g., age, marital status), and social or environment circumstances (e.g., quality of the therapeutic alliance). The authors also note that client versus clinician perceptions about treatment adherence can be tellingly different.

Guided by many of the articles I read prior to writing this entry, the agreed upon response is to expect that people won't participate to the extent or at the frequency recommended by clinicians, and the reasons will vary a lot. Clinicians should proactively talk about "how it's going with medication X, therapy Y or program Z" and listen for the person's views about what contributes to and frustrates sufficient participation. Moreover, reasons for sufficient or insufficient participation need to be shared with team members so they too can tailor their interactions and work to the lived reality of having a particular illness or health problem. Just reporting "He is non-compliant" or "She is compliant" is not saying enough.

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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that may arise in the mental health and addiction fields. Barbara is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. Barbara is also a contributing editor to the Journal of Ethics in Mental Health.

Submit your ethics questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.