Willem Scholten, PharmD, a board member of International Doctors for Healthier Drug Policies, is our Guest Editor this month. Here, Dr. Scholten gives the background to a call on medical journals, their editors, authors and reviewers, on why it’s so important to communicate clearly in ways that benefit patients. This call is also signed on behalf of IAHPC by its Chairman, Prof. Lukas Radbruch.
In a blog on the British Medical Journal’s website, the International Association for Hospice and Palliative Care (IAHPC), together with other organizations, called for awareness that terminology influences patient access to controlled medicines. The call was made jointly with five other medical organizations, including International Doctors for Healthier Drug Policies, the Swiss Romandy College for Addiction Medicine, the World Federation for the Treatment of Opioid Dependence, the European Pain Federation (EFIC) and the Swiss Society on Addiction Medicine.
Our members can help to improve patient access to controlled medicines when they act as authors or reviewers of manuscripts, or as editors(-in-chief) of medical journals. Authors can do so by always using neutral, respectful and unambiguous language when discussing controlled medicines such as opioids when drafting their articles. As reviewers and editors, they can help by accepting manuscripts only after the elimination of inappropriate wording.
There is evidence that choice of language can impede access to medicines, which potentially produce dependence, both for the treatment of pain and opioid dependence. Referring to a person as a “substance abuser” versus “a person with substance use disorder” evokes more stigma and makes it less likely that a person will receive appropriate treatment. 1,2 Moreover, inaccurate terminology may cause an erroneous understanding of a therapy’s character by politicians and administrators (leading to irrational public-health policies), or by patients (who then may decide not to take their medicines). Therefore, we consider the use of appropriate terminology in scientific journals of utmost importance to enhance the quality and clarity of scientific communication and to improve patient access to medicines used to treat both dependence and pain. Others before us recommended against the use of terminology that can stigmatize, 3 but medical journals continue to accept manuscripts with such inappropriate wording.
The focus of using appropriate terminology should be wide and extends to all patients who need controlled medicines, including patients with pain, in palliative care or with substance use disorder. The focus should not be narrowly on medical communication only, but also on policy documents of governments and international bodies, including the United Nations, the World Health Organization and the Pompidou Group of the Council of Europe. And moreover, the focus should be on a range of negative wording; the spectrum of words not to be used includes a number of obvious terms, but also terms that at least may require more debate.
The call notes the most obvious: the word “drug” is ambiguous, as it could mean “medicine” and “non-medically used psychoactive substance”. Most parents and politicians do not like children to use “drugs”, but they are in favor that they receive “medicines” when ill. Therefore, the ambiguity of “drug” could hamper access to controlled (opioid) medicines in cases where their use is fully rational, and the unambiguous “medicine” should be used instead.
Our six organizations request journals to use “person-first” language (e.g., “person with substance use disorder” instead of “addict”). Terminology that is not person-first reduces a person to one characteristic only. Other examples not acceptable any more, are: “abuse/misuse” for (non-medical) use (because this is judgmental); “physical dependence” for tolerance and withdrawal (suggesting that these are true dependence while not meeting the diagnostic criteria for dependence, which has a psychological component too), or, in a medical context, “narcotic” (a legal term from the Single Convention on Narcotic Drugs not accurately representing the character of psychoactive substances, which also can be, for example, stimulants) instead of (psychoactive) substance. “Substitution treatment” or “medication-assisted treatment” ignore that this treatment is based on effective medicines, leading to government policies that exclude pharmacological treatment of substance use disorder. “Opioid agonist treatment” or just “pharmacological treatment” is to be used instead.
Further explanation and alternatives can be found elsewhere. 4,5 In the near future, the presidents and board members who signed the call on behalf of their organizations will publish a more detailed original article under a personal title. Obviously, medical journals are not always aware of these issues and follow the linguistic habits of their authors.
Some people argued that restricting terminology in this way limits the authors’ freedom of speech. It is not the intention of this call to limit freedom of speech in any way. However, freedom of speech should never be an excuse for violating other norms, such as scientific quality and respect towards patients.
1. Kelly JF and Westerhoff CM. Does it matter how we refer to individuals with substance-related conditions? A randomized study of two commonly used terms. International Journal of Drug Policy, (2010) 21: 202–207.
2. Kelly JF, Dow SJ and Westerhoff C. Does our choice of substance-related terms influence perceptions of treatment need? An empirical investigation with two commonly used terms. J Drug Issues, (2010) 40:805. doi: 10.1177/002204261004000403.
3. ISAJE terminology statement; The International Society of Addition Journal Editors recommends against the use of terminology that can stigmatize people who use alcohol, drugs, other addictive substance or who have addictive behavior. Nordisk Alkohol Nark. 2015; 32(5): 539. DOI: 10.1515/nsad-2015-0051.
4. Scholten W. Make Your Words Support Your Message. J Pain Pall Care Pharmacother, 2015; 29: 44–47.
5. Kelly JF, Sitz R, Wakeman S. Language, Substance Use Disorders, and Policy: The Need to Reach Consensus on an “Addictionary”. Alcoholism Treatment Quarterly. (2016) 34:1, 116-123, DOI: 10.1080/07347324.2016.1113103.
Dr. Katherine Pettus, IAHPC Advocacy Officer for Palliative Care Medicines, who is our regular contributor to this page, is currently taking part in workshops in Uruguay and Argentina. Katherine will be back to report on these in the June issue of the newsletter.