The Relational Dimensions of Pharmaceutical Care:
Experience from caring for HIV-infected asylum seekers in Montréal
Authors: David PM1, Robert E. 2, Wong A. 3, 4, Sheehan NL1, 3, 4. Author Contributions:
Conceived and designed the research: PMD and ER. Analyzed the data: PMD and ER. Contributed to the analysis: PMD, ER, AW, NS. Wrote the paper: PMD and ER.
Affiliations:
1 Faculté de pharmacie, Université de Montréal, Montréal, Canada; 2 Postdoctoral Fellow at RI-MUHC, Montreal, Canada.
3 Chronic Viral Illness Service, McGill University Health Centre, Montréal, Canada; 4 Pharmacy Department, McGill University Health Centre, Montréal, Canada;
Abstract:
By describing the experience from dispensing antiretroviral drugs to asylum seekers infected with HIV in Montreal we want to argue for the relational dimensions of pharmaceutical care, beyond specific conditions. Between 2010 and 2016, the Government of Canada changed the medical coverage for refugees and asylum seekers, leading to some uncertainty about what types of care were reimbursable for each migrant status. In Quebec, despite the compensatory coverage provided by the provincial medical insurance board (Régie d’assurance maladie du Québec, or RAMQ), this uncertainty led to a breakdown in patient followup in some establishments. The McGill University Health Centre’s Chronic Viral Illness Service (CVIS) was nevertheless able to maintain continuity of care for refugees and asylum seekers living with HIV. This article looks more specifically at the pharmaceutical care provided during this period and, more particularly, at the convergence of the technical and relational dimensions. The methodology used was a qualitative case study, which made it possible to explore pharmaceutical care, by coonducting qualitative interviews (n=16). Semistructured interviews were conducted with patients and various professionals from the CVIS, including pharmacists. The cultural, administrative, and political dimensions of pharmaceutical care described here appear very important for overall patient care. Further reflection on the importance of relational dimensions of pharmaceutical care and the place and value of pharmaceutical care in the advancement of patient care is required.
Introduction
Between 2010 and 2016, the Government of Canada changed the medical coverage for refugees and asylum seekers, leading to some uncertainty about what types of care and drugs were reimbursable for each migrant status. In Quebec, despite the compensatory coverage provided by the provincial medical insurance board (Régie d’assurance maladie du Québec, or RAMQ), this uncertainty led to a breakdown in patient follow-up at some establishments.1 The McGill University Health Centre’s Chronic Viral Illness Service (CVIS) was nevertheless able to maintain continuity of care and access to drugs for refugees and asylum seekers living with HIV. The team’s interdisciplinary work, rooted in a specific care culture, enabled them to find solutions for the patients.2 The effectiveness of this work was confirmed by a biological study showing that the period of policy change by the Interim Federal Health Program (IFHP) had little impact on the patients’ biological variables.3
This article looks more specifically at the pharmaceutical care4-5 provided during this period and more particularly at the convergence of technical and relational dimensions. We explore how pharmaceutical care, which includes practices beyond clinical pharmacy, contributed tangibly to improved patient follow-up by fitting into an interdisciplinary culture. We argue that pharmaceutical care involves not only technical but also relational dimensions. This then allows us to reflect more generally on the definition of pharmacy and its practice6, the pharmacist's responsibility, the place and value of pharmaceutical care in the advancement of patient care and pharmacists' education.
Two revealing crises for pharmaceutical care
The IFHP was changed both in 2010 and in 2012. These two changes resulted in two “crisis” periods for the staff of the CVIS. Table 1 summarizes the key issues and dates of these changes.
Table 1
The Chronic Viral Infections Service
In 2012, the CVIS was following 1,600 patients living with HIV, approximately 40% of whom were immigrants mainly from African countries and Haiti. Of these, about 150 were covered by the IFHP during the timeframe of our study, accounting for about 10% of active cases. Pharmaceutical care in this context is aimed at those who require close monitoring to encourage adherence, prevent side effects, treatment failure, and/or transmission, but also those who have a precarious socioeconomic status. Pharmaceutical care must therefore also involve the administrative dimensions of
access to care for vulnerable patients whose status is not always clearly identified for the healthcare staff providing the services. These dimensions were particularly pronounced during the changes in the IFHP policy.
As we discovered that the CVIS had managed to provide sustainable access to services unlike many other care providers in Canada and in Quebec1, we investigated the service's history, its dynamics and the determinants of its success. The results about the cultural organisation of the service and its history have been published elsewhere.2 The current paper presents specifically pharmaceutical care in the service in these times of political changes.
Methods
This qualitative case study offered an opportunity to explore the pharmaceutical services provided during extreme times, particularly in regards to access to treatment. The study was conducted from June 2014 to March 2017 in the CVIS. It has obtained ethics approval (MP-CSSS-DLM-M-13-019). The director agreed to reveal the name of the CVIS. All the other participants remained anonymous, and the confidentiality of the interviews was maintained, except for those of the two pharmacists who are co-authors of this article.
Semi-structured interviews were conducted with patients (n=6) and various professionals (n=9) from the CVIS, including pharmacists (n=3). In addition, a deliberative interview7, was conducted with two CVIS pharmacists participating in the research (co-authors of this paper). This interview enabled to discuss and to compare points of view on the implications of this experience for pharmaceutical care. All but two of the interviews were recorded and transcribed. Notes were taken during the two interviews that were not recorded. Consent forms were signed prior to the interviews. The discussions were analyzed with NVivo software, using an interpretive approach and a categorical construction.8
Results
1) The cultural dimension of pharmaceutical care
For the CVIS in general and for the clinic’s pharmacists more specifically, the patient’s culture is immediately identified as an opportunity to form a closer human connection with the person receiving treatment. Culture was also considered something to be "understood" and sometimes “overcome” in order to provide optimal care. Indeed, the place of origin of asylum seekers is identified as a potential explanation for certain behaviours or attitudes regarding medicine or medications:
“The other problem encountered with this clientele is that, often, these are people who didn’t necessarily have access to medication in their country, who had more beliefs in things other than traditional medicine—a lot of
religious beliefs: “God will heal me.” This is an aspect we had to work on a bit, to explain that the drugs were there to help them, to keep them alive and healthy for as long as possible. So, that’s an aspect—a cultural aspect —that needed to be overcome” [translation] (A6).
“Yes, it takes more energy, because battling people’s cultural prejudices to get them to admit that they need to take medication, really does takes time, and it takes energy. It takes an approach that I call very non-judgemental (…)” [translation] (A6).
Taken as a whole, the excerpt thus shows the extent of difficulty involved for the team in “taking care” of people: balancing respect for the individuals while ensuring that the treatment’s benefits are achieved.
The deliberative interview pointed at the cultural competency, not as an exploration of various cultures or as a way to better “communicate,” but rather as a form of open-mindedness that allows pharmacists to understand the experience of the people they treat.
"Something that really helped us develop those skills was the psychosocial rounds. At least once a week, we met, there were always pharmacists, nurses, social workers, psychologist, sometimes MDs. That's where we discovered the rest of the patient's story, not just the medication. It was there that we were quite aware of the complexity of these people. It gave a little more perspective [translation] (D1).
The social status is one of the key aspects of people's experience in the service. Indeed, the migrant status of the patients is also a particularly delicate issue that must be handled by the team regularly. This status not only determines the extent of a patient’s medical coverage but also significantly influences the patient’s state of mind. This is acknowledged by the CVIS, as this member states:
“Often, getting refugee status is the medication, in the sense that they will feel better once they get that status” [translation] (A5).
Despite the fact that facilitating access to medication is one of the responsibilities of pharmacists, the amount of work needed for patients with a precarious migrant status is clearly greater. The CVIS team also tacitly agrees to play an instrumental role in the specific case of requests from asylum seekers to have their status authenticated. For this, the staff is required to complete documents, fill out forms, and write letters. In this context, pharmaceutical care takes into account much more than just the patient’s clinical reality: it proposes interventions that go well beyond traditional adherence support, by helping patients on their life path, since this is understood to be a pre-requisite for achieving improved health.
From an organizational point of view, the team’s multidisciplinary make-up reflects a very particular culture of care, which has been described elsewhere.2 This experience with the IFHP reforms to medical coverage, led the pharmacists to take the cultural identity as well as the social status into account seriously. The regularly held psycho-social meetings served as important reminders to keep a focus on the patients’ realities within their biomedical and pharmaceutical care management.
2) The administrative and political dimensions
As changes were made to the IFHP, the CVIS first worked to prevent any discontinuation in its patients’ treatments. Many healthcare providers were refusing to take on refugees and asylum seekers, regardless of their legal coverage, for reasons of administrative complexity, poor knowledge of the terms of coverage for medications, and the timeframe for reimbursement from the IFHP. Given this situation, the pharmacists at the CVIS gradually became a problem-solving hub integrated in a particular interdisciplinary work and culture of care.2 Specifically pharmaceutical care truly integrated administrative and political dimensions.
According to the key informants, these "problem-solving" activities happened when patients advised the CVIS’ pharmacy team that community pharmacies were refusing to provide their treatments. Lasting negociations between governmental authorities and pharmacists owners professional association led to ehoes and proofs of how patients were denied their medications in a lot of community pharmacies.Over several weeks, the team used various strategies to maintain the continuity of its patients’ treatments: i) first they established a list of all the patients covered by the IFHP; ii) they then contacted them to enquire about the status of their prescriptions; iii) they made requests for free medications (antiretrovirals and medications for opportunistic infections) to pharmaceutical industries on compassionate grounds if necessary; or iv) they referred patients to community pharmacies known to continue to provide treatments to patients covered by the IFHP, despite the administrative ambiguity about the reimbursement of drug costs.
The pharmaceutical team endeavoured to increase patients’ awareness on the importance of planning ahead for their drug renewals in order to avoid treatment interruptions:
“[at that time] We would tell patients when we saw them to renew for more than one month. But sometimes the drug store would block this because those patients normally are only entitled to renew one month at a time. So then we would tell them, ‘Renew at the start of the month and then again two weeks later. Even if you’re not due for your medication, get a renewal anyway. That way, at least, it will give us a good two weeks of manoeuvering time to try to resolve [any problem]” [translation] (A4).
The lack of clarity about the different rights of refugees and asylum seekers, depending on their categorization in one of the 11 migrant categories, the sharing of drug coverage between the provincial and federal levels, and the new administrative procedures deterred many healthcare providers.2 In fact, after the new regulations, physicians had to write the clinical code for the diagnosis on each prescription to allow the insurer to validate the prescription, while the community pharmacist had to write the drug code. The team of pharmacists at the CVIS therefore had to familiarize themselves with the contents of the new administrative regulations and then spread the word to the clinic’s physicians and to the community pharmacists with whom the team interacted regularly. For this, the support of the volunteer lawyer and of lawyers in the community seems to have been invaluable in clarifying the various migrant categories and their respective
rights. One of the strategies adopted was to write an information letter to explain the steps and procedures of reimbursement and coverage to community pharmacists. This letter was attached to patients’ prescriptions by the administrative staff. Pharmaceutical care was therefore closely linked to much-needed administrative work in order to ensure the ongoing care for patients.
During the second IFHP crisis, in tandem with the mobilization of the pharmacy team, the CVIS team also took an advocacy approach.2 For instance, the medical director of the CVIS had discussions with Immigration and Citizenship Canada and with Quebec’s provincial medical insurance board (Régie d’assurance maladie du Québec) to inquire about coverage for diagnoses and medical care for diseases other than HIV/AIDS. The deliberative interview also pointed at the links between the CVIS experience and political claims such as the one for free treatments, which would have resolved the problem of patients being denied treatment in community pharmacy before they were sure to be reimbursed by IFHP program.
"We had made a letter to the deputy for free ARVs or to get community pharmacists to accept the supplement cards, which is another example where we tried to influence" [translation] (D2).
Advocacy work continued internally, within the hospital, to allow non-covered patients to obtain care that fell outside the CVIS’s purview. This meant picking up the phone for every case, calling the person in charge to describe the situation and to make a case for the required surgery, treatment, or X-ray. Thus, pharmaceutical care found itself inserted within a whole set of services that had a highly political dimension for the most vulnerable people.
Discussion
1) Qualitative methodology and pharmaceutical care
With a small sample of semi-structured interviews it is difficult to quantify the weight of verbatims presented above. In this particular case study we had access to a limited number of pharmacists. Nevertheless, qualitative methodology is more about having a diversity of perspectives emerge and specify them. To better describe these perspectives, the deliberative interview helped co-construct the various dimensions of pharmaceutical care experienced during this period of political changes by considering pharmacists as informants but also as "partners" in the research7. In line with other qualitative perspectives on pharmacy practice9-10, our qualitative results challenge a restrictive and technical definition of pharmaceutical care. As defined by Alleman and colleagues, "Pharmaceutical care is the pharmacist's contribution to the care of individuals in order to optimise medicines use and improve health outcomes". The means for this are too often reduced to technical applications of clinical pharmacy. In the experience described above, thanks to qualitative methodology, pharmaceutical care appeared with tangible health impacts (continuous access to treatments, prevention of drug supply shortages, and the absence of virologic rebounds3), and as part of a broader
multidimensional and collaborative care involving not only technical dimensions but also cultural, administrative and political ones.
2) Cultural competencies and pharmaceutical care
Pharmacists’ cultural competencies (in combination with technical skills) are also important to offer optimal pharmaceutical care to the most vulnerable groups. People from cultural and linguistic minorities often have poorer health than those in the majority group.11 Various factors come into play to explain this disparity, including the social determinants of health of minorities and the fact that the care provided by healthcare professionals (from diagnosis to treatment) may not necessarily be adapted to the minorities.11-12 Under these circumstances, cultural competencies are important at all levels of care provision, including that of the pharmacist.13 Indeed, it is essential that the cultural and relational aspects of the treatment experience be taken into account to foster trust and patient-adapted pharmaceutical care.14 This cultural and relational dimension of pharmaceutical care should therefore be taken seriously in the initial training of future pharmacists, by taking the cultural aspects into account but not by reifying patients in a cultural identity. Indeed the experience in the service showed that these cultural issues can be subsumed under broader social conditions.
3) Pharmaceutical care and inter-and intra-professional collaboration
The links between pharmacist and other professions in the service have also broadened the vision of what could be done to improve patients 'access, such as the psycho-social meetings, showing the importance of how pharmaceutical care is positioned in inter-professional dynamics. Indeed, interdisciplinary work has been shown to contribute to the development of trust-based relationships, to foster collaboration, and to enhance professional image.15 Crisis experiences and potential breakdowns in care, like those described in this research are also, paradoxically, apt to provide recognition for pharmacists as important professionals within multidisciplinary care teams.16 Intra-professional collaboration is also important for enhancing this image and the quality of pharmaceutical care, since it notably allows for information sharing and the continuity of pharmaceutical care between the first and second lines. Conditions for collaboration, such as those observed in this research, should be integrated in an overarching view of the different aspects of pharmaceutical care, located at the boundary between administrative regulations and professional ethics.
4) The pharmacist as a political actor in care
In a broader perspective, this research invites further reflection on the role of the pharmacist as a political actor in patient care and patient advocate. In fact, this role is often instrumentalized by the authorities to help control the practice of medicine. For instance, within hospitals’ antibiotic stewardship teams, pharmacists have had a major impact on the rational use of antibiotics, while also contributing to improving antibiotic governance.17-19 In our case, the pharmacists’ political role resulted from their dual activity—at the clinical and administrative levels—in providing access to medication, and this role allowed them to understand the obstacles in accessing treatments and the possible impacts on patient health. This specific position occupied by pharmacists should also be used to make pharmacists fully-fledged political actors, that is to say
people who have an overview of the healthcare system, its efficacy and its issues, and who can commit themselves as citizens to policies that are just, inclusive and effective in order to improve health outcomes related to medications. In this sense, the commitment of the Canadian HIV and Viral Hepatitis Pharmacists Network for universal access to antiretroviral drugs20, and the participation of the Canadian Pharmacists Association in debates as fundamental as the development of a pan-Canadian drug insurance plan21 has a specific echo in the perspective of patients' uncertainties generated by political changes evoked above. The experience presented in this paper, for instance, shows very specifically how having multiple insurance plans can cause confusion at sites offering services and lead to a breakdown in care and in access to medication, even for people who are theoretically covered. One undeniable advantage of having a national insurance plan would be to simplify complex situations and to ensure access to medication.
Conclusion:
In 1990, Helper and Strand defined pharmaceutical care as "the responsible provision of drug therapy for the purpose of achieving definite outcomes that improve a patient’s quality of life". We understand the needs of a standardised definition and acknowledge the discussions clearly stated around the 2014 PCNE definition. Yet, the experience presented in this paper hints at what might have been lost in this definition: particularly the word "responsibility". Without responsibility, pharmacists involved in the care described above would never have committed themselves in the way they did. We argue that this commitment was also linked to a specific pharmaceutical social responsibility. Indeed, the various dimensions of pharmaceutical care presented here invite reflection on other “values” that can be attributed to pharmaceutical care, without reducing its care to a utilitarian vision of its biological and economic outcomes. On the other hand, this case reveals the relational and political values of pharmaceutical care that should also feed the "future vision" of pharmacists and their "social responsibility".
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