Over the past few years of pharmacy practice, I’ve felt increasingly unheard and unsupported in my attempts at best practice.i This feeling has been pronounced when attempting to advocate for my patients, most strongly when involving my patients on Opioid Agonist Therapy (OAT).ii The problem as I best understood it upon reflection had a lot to do with the typical practice I experienced undermining what I thought were the goals of therapy.iii Since I originally took the Ontario Pharmacist Association’s OAT continuing education course years ago,1 I came to see harm reduction as the primary goal of OAT,iv and certainly the public communications of prominent organizations and clinics dealing with OAT seem to agree with this, such as those of the Ontario Addiction Treatment Centres (OATC).v But real-world care I was witnessing didn’t seem to match with this. Paternalistic and punitive interventions appeared to support a goal of behaviour change through discipline. Assuming what I thought I was seeing was real, I felt that a mismatch of therapeutic goals could lead to problems in therapy: My interventions at the service of harm reduction likely hurt the effectiveness of disciplinary techniques, and vice versa.vi So I took it upon myself to try and better understand this thing that was so prominent in the culture of treating Opioid Use Disorder (OUD) so that I could better align my practice with other healthcare practitioners if it made sense and was evidence-based.
I read through numerous UpToDate articlesvii as well as recently updated guidelines and recommendations, including the synthesized Canadian guidelines from the Centre for Addiction and Mental Health (CAMH)2 and the recommendations specific to treatment of fentanyl users developed through the Mentoring, Education, and clinical Tools for Addiction: Partners in Health Integration (META:PHI) project,3 and found that disciplinary interventions were almost entirely unsupported, the sole exception being contingency management.viii This occasionally took the form of the discouraging of specific practice methods,ix but more by the type of practice being described consistently across these sources. A major focus of contemporary recommendations concerns not just therapy directed at limiting harms to patients and improving their lives through OAT, counselling, and other psychosocial interventions, but better involving the patient in therapeutic decisions—empowering them and respecting their choices. Some of this involves specific interventions, such as motivational interviewing or cognitive-behavioural therapy,x but also entails more broad ideas, such as empathetic or trauma-informed care.
So I wasn’t able to find justification for the kind of practice I was observing in the resources I read. But then why does this therapeutic culture exist? The META:PHI document suggests a theory:
Although the [College of Physicians and Surgeons of Ontario (CPSO)] discontinued its methadone policy, program standards, and guidelines in March 2021 … these continue to inform the practices of Ontario prescribers who were expected to adhere to the guidelines as a standard of practice against which they would be explicitly assessed.4
This implies that the previous CPSO standards and guidelines could give some insight into my question.xi However, reading through the 2011 guidelines—those that were in place until March 2021—I’m not convinced that this explanation is entirely satisfying. While it’s believable that physicians prescribing methadone may have taken a strict or cautious approach in order to protect themselves in the case of practice assessments, these guidelines still promote an individualized, collaborative, and supportive patient-centred approach to effective therapy, much like more recent recommendations.5,xii
I don’t believe that what I understand to be cultural norms in healthcare just come into existence without some sort of discoverable explanation, but my search for such a thing in this instance felt like I was approaching a dead end. I decided to not dwell on it and move on to unrelated reading, and it was there that I hit on some inspiration in an unlikely place: in the realm of political science. While learning about theories of political representation, I was struck with the notion that these ideas could inform our understanding of the relationship between the healthcare provider and the patient. And this fits in with my purposes here by allowing us to perceive theoretical differences in provider perspectives on patient-centred care that will demonstrate how practice can differ in important ways from the patient-focused approach described in the guidelines and still be viewed as patient-focused by the provider.
I came across The Concept of Representation by Hanna Fenichel Pitkin6 while reading another book that wasn’t mainly focused on political representation,7 but I was intrigued with a brief summary of some important ideas from the Fenichel Pitkin book that were laid out near the end. So I found a copy and read through it, and it fundamentally changed the way I understood the central idea. In The Concept of Representation, Fenichel Pitkin describes what is meant by representation by analyzing the use of the word in various domains historically—including politics, law, literature, and art—and by exploring theories about political representation across multiple eras, using all of this as building blocks to arrive at a more concrete definition of the concept by the end. While I highly recommend reading the book in full, even just to obtain a clearer context for what I’m about to discuss, I want to describe one specific theory of political representation that I plan to relate back to the idea of patient-centred care: that developed by the Enlightenment-era, British politician, Edmund Burke.8
At the time that Burke was expressing his ideas about representation, only an extremely small proportion of the British public had the right to vote in elections and even large cities had no ability to send a representative to Parliament,xiii but Burke argued that this was good for a more general, effective representation, and he even argued against further extension of the franchise.9 This was because Burke believed that the specific things a parliamentarian should be representing are the interests of the nation and its citizens, rather than representing the people themselves.10 He saw interests as objective and unattached to any specific group or individual, that they are broad, lasting, and readily identifiable,11 so long as their identification is attempted through rational deliberation.12 In this way, government and politics should be viewed as “matters of knowledge and reason, not of opinion or will.”13 As such, the best way to find these objective truths were through a ruling group composed of a “genuine elite” or “natural aristocracy,” “superior men of wisdom and ability.”14 This group would be better equipped to judge the best interests of the people than the people themselves, largely on account of their superiority, but Burke also notes that “the people are at a disadvantage in discovering their true interest because they cannot participate in parliamentary deliberations,”15 and “[i]t makes no sense for those present at deliberations on a question to consult with those who were not present.”12 For these reasons, Burke understood that the representative was an independent trustee, that “[the people] owe their representative complete freedom to act as he sees fit,” and that “[i]f he ‘sacrifices’ his judgment to their opinion ‘he betrays, instead of serving’ them.”12,xiv
But this doesn’t mean that Burke believed that the representative should ignore those he is representing, rather expressing that representation requires “a basis in the actual,”16 and this could be achieved in a couple of ways. One was made clear through the suggestion that the House of Commons should be “the express image of the feelings of the nation.”17 Here, Burke identifies another concept separate from “interest” or “opinion”: “the expression of needs or suffering or symptoms, which he refers to as ‘feelings,’ ‘sentiments,’ or ‘desires.’ ”17 This is described further:
“Feelings” are a simple expression of something that is wrong, a complaint. “Opinions” may grow out of these, but they go beyond them into the realm of more abstract speculation, suggesting what may be the cause of the trouble, and what may be an appropriate remedy in the light of interest. Unlike opinions, feelings are reliable; and people are seldom mistaken when they perceive a pain or symptom, be it physical or political. It is only when they attempt to speculate abstractly on the basis of what they feel that they go astray into opinion.17
Burke saw the people’s feelings as a reliable source of data used to inform parliamentary deliberation, but he still viewed politicians as the only ones capable of converting this information into real action in the people’s interest:
The people are the masters. They have only to express their wants at large and in gross. We are the expert artists; we are the skillful workmen, to shape their desires into perfect form, and to fit the utensil to the use. … They are the sufferers, to tell the symptoms of the complaint; but we know the exact seat of the disease, and how to apply the remedy.16
The other way that representation exhibited this “basis in the actual” was through the long-range agreement between the representative and the constituency. Because Burke believed that there is only one “true” or “right” interest, and because any honest and capable representative can discover this interest as distinct from opinion, Burke believed that the constituents would similarly, eventually come to accept it: “Given enough time and thought, any reasonably intelligent and unprejudiced person will find it to be so, just because it is.”18 “Burke makes explicit the parallel between rational deliberation in Parliament and the more slow and irrational, but equally wise sifting of opinions through society over time.”15 In his view, this meant that “[l]ong-range disagreement between representative and constituents can occur only if the representative is corrupt or incompetent,”18 and that “the deliberate wishes of the people must prevail.”15 In short, “when the people as a body … expressed their wishes ‘strongly, decidedly, and upon long deliberation,’ then their ‘general sense’ was to be taken for wisdom.”10
In summary, the components of the Burkean theory of representation are as follows: (1) representation of interests, rather than people; (2) interests as objective, broad, lasting, and identifiable through rational deliberation rather than opinion; (3) an elite group composed of men with superior wisdom, rationality, and judgment being better able to arrive at the truth of these interests rather than an inferior public; and (4) requiring the elite decision-makers to rely on the good, real-world information composed of the public’s feelings and long-standing, deliberate wishes to inform and judge the merits of these decisions. If we consider these broad concepts as they relate to healthcare, we start to form a picture of the healthcare provider that may employ paternalistic or disciplinary methods while still seeing their care as patient-focused or patient-centred. Should the provider see their role as supporting the interests of the patient, rather than supporting the patient and their opinions on what that interest is, this view is consistent. Should the provider believe that they possess greater knowledge and skills than the patient has, which allows them to better determine what this interest truly is, this view is consistent. And the notion of involving the patient or hearing the patient need not require the active participation of the patient in therapeutic decisions; a clinician that effectively hears a patient’s real complaints or symptoms and uses the information to direct therapy independent of the patient may still feel that their care is collaborative. But does any of this actually live up to the substance of what is meant by patient-centred, patient-focused, supportive, empowering, or collaborative care? Does this simply follow the letter, rather than the spirit, of the idea?
Turning back to The Concept of Representation can provide us with a more nuanced understanding of what constitutes “good” representation, in a way that can hopefully extend to our understanding of patient-centred care:
[R]epresenting here means acting in the interest of the represented, in a manner responsive to them. The representative must act independently; his action must involve discretion and judgment; he must be the one who acts. The represented must also be (conceived of) capable of independent action and judgment, not merely being taken care of. And, despite the resulting potential for conflict between representative and represented about what is to be done, that conflict must not normally take place. The representative must act in such a way that there is no conflict, or if it occurs an explanation is called for. He must not be found persistently at odds with the wishes of the represented without good reason in terms of their interest, without a good explanation of why their wishes are not in accord with their interest.19
This seems more in line with what comes to mind for me when I consider what is truly patient-centred, and it similarly appears more in line with the care described in OAT guidelines and recommendations, though with some needed clarifications. From a healthcare perspective, it’s likely more appropriate to look at “action” as being less one-sided, for there are certainly things that the healthcare provider will do that the patient is unable to do, but there are also plenty of decisions made by the patient and actions they’ll perform independently of the provider that will greatly influence therapeutic outcomes. It’s probably more instructive to look at both as independent actors who can either work together or in opposition. Another important point to examine more closely is that the represented must be “capable of independent action and judgment.” Here, we approach some potential difficulties especially in the case of mental health disorders that can impair a patient’s judgment, such as OUD. Part of this is explained in CPSO’s discontinued guidelines when describing considerations after a toxic dose of methadone is ingested and the patient refuses to go to an Emergency Department (ED) against medical advice:
The patient has a mental health diagnosis (addiction) that makes it difficult for them to appreciate the need for medical treatment. (Clinical experience suggests methadone patients tend to be far more concerned about methadone withdrawal than intoxication. The [Methadone Maintenance Therapy] patient might be worried that they will receive naloxone in the ED or that their next methadone dose will be reduced or delayed.)20
I wouldn’t take this to mean that the typical OUD patient is incapable of judgment, and because interventions requiring the patient to use their judgment, such as motivational interviewing and cognitive-behavioural therapy, seem to show some effectiveness on clinical outcomes, the evidence likely supports this. Rather, this should probably reinforce the idea that a clinician truly acting in an OUD patient’s interest will likely find themselves in conflict with the patient’s wishes at some point, simply by the nature of the condition being treated. The important thing, then, is for the provider to be sure that they can justify to the patient the decisions being made, and that they should be mindful not to be in conflict with the patient’s wishes consistently, otherwise the very idea that they are acting in the patient’s best interest should probably come into question.
It’s worth noting that these ideas can likely inform the way we look at the provider-patient relationship more generally, outside of OUD and OAT. And ideas like these can help develop a theoretical language that allows providers to better describe and judge therapeutic culture, even aiding in the creation of practice benchmarks and ideals to strive for. To do so, it’s important to make these types of conceptual connections, and to think about them and talk about them critically. Though it may not yield anything groundbreaking by the end, developing these types of ideas and subjecting them to this type of process is necessary if healthcare providers want to change and adapt to meet patient needs rather than simply accepting the status quo.
i. The dissatisfaction that resulted was part of the reason I changed career paths multiple times in the somewhat recent past. The experience I’m relating here comes from previous positions and not from the position I currently hold.
ii. This includes those prescribed methadone, Suboxone (buprenorphine/naloxone), and Kadian (slow-release oral morphine) for OUD.
iii. Almost the entirety of my practice involving OAT has been out of Thunder Bay, Ontario, so I understand that my perspective and resulting insights may be limited in their applicability to other practice locations. However, multiple OAT clinics in Thunder Bay employ telemedicine, with prescribers based elsewhere in Ontario, meaning that this sort of practice extends elsewhere in the province at least to some extent. I also should note that I haven’t been working in a practice environment with a major focus on OAT for a few months at the time of writing, and so it’s possible that I’m unaware of extremely recent practice changes.
iv. Harm reduction principles involve reducing the negative consequences of drug use, encouraging safer and managed drug use, with a goal of improving the lives and health of drug users. Though abstinence may be a part of individualized therapy, it’s not a requisite part of therapy. Good sources of further information on harm reduction include the websites of the U.S.-based National Harm Reduction Coalition and Harm Reduction International.21,22
v. The Vision Statement reported on OATC’s official website specifies that, “[t]he Ontario Addiction Treatment Centres will be the recognized leader in the provision of high quality, innovative harm reduction and supportive strategies for individuals living with the devastating effects of drug addiction.”23
vi. Disciplinary techniques involve the targeting of specific behaviours of individuals, encouraging positive behaviours through the provision of rewards and discouraging negative ones through punishment. To effectively employ these types of interventions, one must be strict and consistent, and this is how a practitioner who isn’t on the same page can disrupt their effectiveness. An example of such an intervention I commonly witnessed in my practice is holding a patient’s methadone dose for a missed urinary drug screen (UDS). From a disciplinary perspective, to encourage habitual, scheduled sharing of illicit drug use information from the patient, the practitioner rewards the obedient patient by providing the dose and punishes the disobedient patient by holding it. From a harm-reduction perspective, however, holding a dose encourages illicit drug-seeking behaviour from the patient who is either craving opioids or attempting to treat or prevent withdrawal symptoms, and so it still makes sense to provide safer supply despite disobedience because the benefits outweigh the harms. Here, the disciplinarian can theoretically change behaviour over time by being strict and consistent, but a harm-reducer discourages this and, as such, will likely reduce the effectiveness of these attempts. A good source of information on theories of discipline is Michel Foucault’s Discipline and Punish.24
vii. UpToDate is a high quality resource for evidence-based therapy that supports clinical decision making for healthcare professionals. Topics are written by experts and updated regularly after newer evidence is rigorously reviewed.25
viii. Contingency management is a treatment strategy that involves the provision of incentives to reinforce target behaviour, such as reducing illicit drug use or improving medication compliance or therapeutic attendance.26 I’ve only observed this in real-world practice as increases in carry-home doses in exchange for UDS free of illicit substances. (Patients will often have to attend a clinic or pharmacy on a daily basis for an observed dose of an opioid. When they consistently provide UDS samples and screen negative for illicit substances, they will slowly be given additional doses on observation days to be taken at home on “carry” days. For methadone, one weekly carry is typically provided after two months of clean UDS alongside other measures of clinical stability, and another weekly carry will be added for every four weeks this is maintained—though there are exceptions to this schedule. Carry doses can be taken away based on positive UDS or other indications of clinical instability or risk, including attempted UDS tampering or diverted doses.)27 However, contingency management can also involve awarding prizes or monetary incentives to reward target behaviour, though I haven’t witnessed these kind of rewards in practice. Both kinds of rewards have been studied and found to improve measures such as treatment retention and abstinence from illicit drugs,28,29 though benefits have not been shown to be sustained long-term after removal of the incentives.30
ix. A good example here involves the use of UDS. In the CAMH guidelines, it’s made clear that UDS should not be used punitively (or to “catch a patient lying”), but “to provide information to help assess and manage risks and guide treatment decisions between clinician and patient.” An emphasis is made to use clinical judgment and tailor UDS frequency to patient preferences and individual circumstances, and to attempt to address patient concerns and eliminate barriers when patients miss collections or tamper their specimens.31 The META:PHI document discusses the limitations of UDS and recommends focusing on the usefulness of UDS to the patient. (As an example passage: “Urine testing should always be an option for patients who find it helpful and reinforcing to see their results and for those concerned with possible exposure to contaminants in their drug supply.”) The section on UDS concludes with the notion that, “[u]rine testing should not be required for dose adjustments, and doses should not be withheld if a patient does not provide a urine sample,” though it should still be viewed as a requirement for patients wanting take-home doses.32
x. Motivational interviewing is a counselling technique that involves collaboration with the patient and eliciting techniques used to help resolve ambivalences about changing behaviours that are unhealthy. Using this intervention, the practitioner seeks to understand the patients’ perspectives and help guide them toward making positive change, effectively supporting patients to drive the change themselves.33 Cognitive-behavioural therapy is a type of psychotherapy aimed at building patient awareness of thoughts, emotions, and physical sensations that can affect behaviours such as opioid use, and vice versa, learning how such behaviours affect these domains. Skills are then developed to help patients to modify or accept them.34 Both interventions have positive-leaning, but mixed, clinical evidence.35,36
xi. Current methadone maintenance therapy prescribing advice by the CPSO is much less in depth and leaves a great deal more room for professional judgment than the 2011 guidelines. It’s also entirely in line with other contemporary guidelines as far as I can tell—with a note of endorsement of the CAMH guidelines, in fact.37
xii. A summary of major changes to previous CPSO recommendations specific to fentanyl users is provided in the META:PHI document. The main focus of the changes is on reaching therapeutic doses quicker and improving treatment retention of those with higher opioid tolerance.38 I had observed an uptake of these updates by some, but not all, local OAT prescribers while I was still practicing in Thunder Bay.
xiii. According to London’s National Archives, “A survey conducted in 1780 revealed that the electorate in England and Wales consisted of just 214,000 people – less than 3% of the total population of approximately 8 million,” and “[l]arge industrial cities like Leeds, Birmingham and Manchester did not have a single MP between them.”39
xiv. All this can explain Burke’s opposition to extension of the suffrage. Allowing more people to vote is harmful as “it takes an elite group of voters to select the most elite rulers.”40 He also viewed it as unnecessary, because he saw an elite group of rulers deliberating and making the best decisions toward the objective interest of the nation and its citizens as looking after the interests of even the disfranchised, since this is a matter of an objective good and not conflicting opinions.9 It was only where a group could demonstrate “real” grievances rather than just “speculative” ones that Burke could be convinced that no one in Parliament represented their interests and he felt they were deserving of extension of the vote, such as with Irish Catholics or American colonists.11
- “Opioid Addictions and Substitution Therapy.” Ontario Pharmacists Association, opatoday.com/product/opioid-substitution/. Accessed 2 Oct 2021.
- Opioid Agonist Therapy: A Synthesis of Canadian Guidelines for Treating Opioid Use Disorder. Centre for Addiction and Mental Health, May 2021. www.camh.ca/-/media/files/professionals/canadian-opioid-use-disorder-guideline2021-pdf.pdf. Accessed 14 Aug 2021.
- Bromley L, et al. Methadone treatment for people who use fentanyl: Recommendations. Toronto, ON: META:PHI, 30 Jun 2021. www.metaphi.ca/assets/documents/provider%20tools/MethadoneForFentanyl.pdf. Accessed 15 Aug 2021.
- Ibid, pp. 4-5.
- Smith C, et al. Methadone Maintenance Treatment Program Standards and Clinical Guidelines. College of Physicians and Surgeons of Ontario, Feb 2011. www.researchgate.net/publication/271076438_Methadone_Maintenance_Treatment_Program_Standards_and_Clinical_Guidelines_College_of_Physicians_and_Surgeons_of_Ontario. Accessed 23 Sep 2021.
- Fenichel Pitkin H. The Concept of Representation. University of California Press, 1972.
- Jacobs LR and Shapiro RY. Politicians Don’t Pander: Political Manipulation and the Loss of Democratic Responsiveness. The University of Chicago Press, 2000.
- Fenichel Pitkin H, op. cit. pp. 168-189.
- Ibid., p. 179.
- Ibid., p. 182.
- Ibid., p. 178.
- Ibid., p. 170.
- Ibid., p. 189.
- Ibid., p. 169.
- Ibid., p. 181.
- Ibid., p. 184.
- Ibid., p. 183.
- Ibid., p. 180.
- Ibid., pp. 209-210.
- Smith C, et al. op. cit. p. 72.
- “Principles of Harm Reduction.” National Harm Reduction Coalition, harmreduction.org/about-us/principles-of-harm-reduction/. Accessed 3 Oct 2021.
- “What is harm reduction?” Harm Reduction International, www.hri.global/what-is-harm-reduction. Accessed 3 Oct 2021.
- “Our Mission, Vision, & Value Statement.” Ontario Addiction Treatment Centres, www.oatc.ca/mission-vision-and-value-statement/. Accessed 2 Oct 2021.
- Foucault, M. Discipline and Punish: The Birth of the Prison. Vintage, 1979.
- “About UpToDate.” Wolters Kluwer, www.wolterskluwer.com/en/solutions/uptodate/about. Accessed 3 Oct 2021.
- Peavy KM. “Psychosocial interventions for opioid use disorder.” UpToDate, 7 May 2021. www.uptodate.com/contents/psychosocial-interventions-for-opioid-use-disorder. Accessed 21 Jul 2021.
- Smith C, et al, op. cit. pp. 50-52.
- Chutuape MA, Silverman K, Stitzer ML. Effects of urine testing frequency on outcome in a methadone take-home contingency program. Drug Alcohol Depend. 2001;62:69-76.
- Chen W, et al. Effectiveness of prize-based contingency management in a methadone maintenance program in China. Drug Alcohol Depend. 2013;133(1):270.
- Benishek LA, et al. Prize-based contingency management for the treatment of substance abusers: a meta-analysis. Addiction. 2014 Sep;109(9):1426-36.
- Opioid Agonist Therapy. CAMH, op. cit. pp. 17-18.
- Bromley L, et al, op. cit. p. 15.
- Ingersoll K. “Motivational interviewing for substance use disorders.” UpToDate, 15 Mar 2019. www.uptodate.com/contents/motivational-interviewing-for-substance-use-disorders. Accessed 26 Jul 2021.
- Peavy KM, op cit.
- Smedslund G, et al. Motivational interviewing for substance abuse. Cochrane Database Syst Rev. 2011.
- Magill M, Ray LA. Cognitive-behavioral treatment with adult alcohol and illicit drug users: a meta-analysis of randomized controlled trials. J Stud Alcohol Drugs. 2009;70(4):516.
- “Advice to the profession: Prescribing drugs.” College of Physicians and Surgeons of Ontario. www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Prescribing-Drugs/Advice-to-the-Profession-Prescribing-Drugs. Accessed 4 Oct 2021.
- Bromley L, et al, op cit. p. 19.
- “Getting the vote.” The National Archives. www.nationalarchives.gov.uk/pathways/citizenship/struggle_democracy/getting_vote.htm. Accessed 7 Oct 2021.
- Fenichel Pitkin H, op. cit. p. 171.