Int J Clin Pharm DOI 10.1007/s11096-015-0104-5

COMMENTARY

Reflecting on patient-centred care in pharmacy through an illness narrative Ros Dowse1

 Koninklijke Nederlandse Maatschappij ter bevordering der Pharmacie 2015

Abstract Patient-centred care (PCC) is rapidly adopting a central position in discussions on the quality of healthcare, with patient-centredness deemed essential to transforming the healthcare system. PCC speaks to the quality of patient-provider relationships and has been defined as an approach to providing care that is respectful of and responsive to individual patient preferences, needs, and values, while ensuring that patient values guide all clinical decisions. However its place within pharmacy practice is unclear and is as yet undefined, particularly in relation to pharmaceutical care. Through my personal illness narrative, I briefly explore the visibility and evidence of PCC in the pharmacy literature as well as from personal experience of pharmacy care, and find it lacking. I conclude that an integrated, seamless understanding of PCC and the use of shared language within the health professions is essential in successful teamwork with both the patient and with other health professions. Keywords

Patient  Patient-centred care  Pharmacy

Impact on Practice •

The pharmacy profession, at a global level, should address the confusion of terminology related to patient care (medication reconciliation, medicines use review, medicines optimisation, pharmaceutical care etc.) and clarify the role of patient-centred care in pharmacy.

& Ros Dowse [email protected] 1

Faculty of Pharmacy, Rhodes University, P. O. Box 94, Grahamstown 6140, South Africa





Pharmacists should be more visible on hospital wards to interact with patients in addressing medicine-related issues. As patient-centred care is about ‘‘how’’ things are done, rather than ‘‘what’’ is done, acknowledge patients as people, not merely as clients/conditions to be treated with medicine. Please smile at us patients, and encourage and acknowledge our input.

My illness narrative Patient-centred care (PCC) has become an increasing focus of research, practice and policy, but there is little consensus on the meaning of this concept within the pharmacy literature [1]. Has this concept been incorporated into pharmacy discourse and can we describe our profession as patient-centred? Grounded by my personal ‘‘illness narrative’’, I present my reflections. An academic pharmacist for 30 years, I have also become an ‘‘expert patient’’; rheumatoid arthritis for 35 years, treatment for extra-pulmonary TB for 13 months and a 17 year journey with oral cancer. I was diagnosed with squamous cell carcinoma of the tongue early 1998 and had three occurrences of cancer, a 6-week course of radiation and four operations on tongue and neck by 2001, culminating in my first life-changing operation when almost half the tongue was excised and replaced with a vascularised forearm flap. The following 9 years included extensive dental and prosthodontic work to prevent chronic infections and loss of the mandible due to post-radiation tooth decay and xerostomia. In 2010 cancer was re-diagnosed by biopsy behind the lower front dental implants, necessitating further surgery. Although a subsequent PET scan showed no evidence of cancer, in 2012 extensive

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surgery revealed malignancy in the mandible around the implants. The traumatic, life-changing year of 2013 started with a 12 h operation for a mandibulectomy, the harvesting of a fibula used to fashion a prosthetic jaw and extensive microsurgery to establish blood supply to the fibula graft. The 3 week hospital stay was a traumatic one, stimulating me to start walking the path as a patient advocate to the health professions, as I constantly found myself wondering how seriously ill patients ever made it out of hospitals alive. I experienced the very best and, unfortunately, the very worst of hands-on ‘‘care’’, communication styles and (un)professional attitudes. However with my high health literacy skills, I was equipped to identify errors, correct nurses, and demand responses from doctors. Despite this, I felt as though the health system often worked against rather than with me, and had, on occasion, thrown me to the floor and deliberately ground me to a pulp beneath its foot. How do other patients fight back and challenge the system? In accordance with findings from quality of life studies in head and neck cancer patients [2] my basic life functions are now severely compromised: I have impaired swallowing and a tendency to choke easily; I cannot process most foods with my immobile tongue so exist on a soft diet; compromised lip closure affects all eating and drinking and results in constant drooling; my speech is severely affected, although with significant energy and effort I can make myself understood. Along with an altered physical appearance, I am no longer a ‘‘normal’’ social being and I am unable to function socially in a ‘‘normal’’ and acceptable manner.

Patients in normal society, patient choices and patient voices Where do overt functionality and altered appearance issues place patients such as myself in society? Within our changed lives and selves, how are we seen by ‘‘normal’’ people, cope with our compromised quality of life, make meaning of this new way of being within a wider social world? Sociologists refer to ‘‘biographical disruption’’ in which the relations between body, mind and everyday life are threatened [3]. Sociologist Frank writes [4]: ‘‘Serious illness is a loss of the ‘destination and map’ that had previously guided the ill person’s life: ill people have to learn ‘to think differently’.’’. He speaks to the disempowerment experienced by patients by saying: ‘‘Seriously ill people are wounded not just in body, but in voice. They need to become storytellers in order to regain the voice that illness and its treatment often take away.’’. But what resonated so deeply within me, as a teacher, was his use of the term ‘‘the pedagogy of suffering’’ which he clarified as: ‘‘one who

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suffers has something to teach…and thus has something to give’’. We patients need not be restricted to being passive recipients of care, but can also (if we choose) actively engage with society and make meaning of our experiences by teaching others, especially I would argue, our healthcare professionals (HCPs). We patients do have a choice. As Holocaust survivor Viktor Frankl [5] so profoundly writes: ‘‘Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way’’. But does the health system allow patients a choice? Increasingly over the past few decades, patients have started exercising this choice, forcing the shift to greater patient-centredness. The previously dominant biomedical model, with its focus on expert knowledge of the disease/body part, restricted the role of the patient to ‘‘complying’’ with instructions, progressively silencing the patient voice and making no place for illness narratives describing the lay experience of illness. Many patients, finding it easier to succumb to the power of the healthcare system, adopted a passive role, devolving responsibility for their treatment choices to others. But with the rise of chronic diseases in the mid-twentieth century, the single cause/curative focus of the biomedical model became inappropriate for managing chronic disease. Important markers in this paradigm shift in the 1970s– 1908s include Engel’s proposal of the biopsychosocial model [6], taking into account the patient as a thinking, feeling, social being as opposed to merely a body in need of repair. Kleinman’s definitions of ‘‘illness’’ and ‘‘disease’’ [7] reflect the patient’s subjective experiences of illness, in marked contrast to the doctor’s biomedical understanding. In the 1990s, increased accessibility of information via the internet narrowed the huge gap between ‘‘expert’’ and ‘‘lay’’ knowledge and contributed to increased lay involvement in healthcare. The doctor is no longer accepted as always ‘‘knowing what is best’’ as patients increasingly demand involvement in the decisionmaking process.

Patient-centred care In 2001, PCC was enshrined by the US Institute of Medicine’s ‘‘quality chasm’’ report as one of six key elements of high-quality care, being defined as ‘‘…an approach to providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions’’ [8]. PCC, rather than centred round disease, doctors, hospitals, professional expertise or technology, speaks to the quality of personal, professional, and organizational

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relationships [9]. HCPs should be empathic, respectful, compassionate, tolerant, honest, accountable and self-reflective [1, 9]. Partnerships should be built with the patient through collaboration, aimed at ensuring a mutual understanding of roles and responsibilities and encouraging participation in decision-making. PCC encompasses the obligation to care for patients who are known as unique individuals and to try to understand the whole person (biological, psychological, social), eliciting their needs, values, preferences, beliefs, feelings, concerns, and expectations, as well as acknowledging the patient’s illness experiences and how they influence everyday life [1, 9, 10]. Importantly, it does not comment on professional skills or the need for specialised expertise—that aspect is taken as a given.

Patient-centred care in pharmacy In contrast with other health professions, global and national pharmacy organisations do not appear to have engaged with focused discussion on the concept of PCC or how it has been/should be incorporated into practice. A limited number of reports and pharmacy research papers have alluded to pharmacy PCC, while others have altered it to ‘‘patient-centred pharmaceutical care’’ and, variously, have: •









encouraged pharmacists to ‘‘…meet the changing needs of patients…’’, ‘‘counsel[ing] on disease prevention and lifestyle modification…’’, and adopt ‘‘…shared decision-making on how to take medicines…’’ [11]. explained to pharmacists that ‘‘The scope of pharmacy practice now includes patient-centred care with all the cognitive functions of counselling, providing drug information and monitoring drug therapy…’’ [11]. informed pharmacists that ‘‘…the demand for pharmacists’ specialist skills in patient-centred pharmaceutical healthcare will grow markedly…’’ [12]. defined the role of pharmacists as having ‘‘…evolved from that of a provider of medicines to that of a provider of patient-centred pharmaceutical care [11]. described ‘‘…patient-centred pharmaceutical care processes’’ to include ‘‘…assessing patients’ medical and drug-related therapies, developing a care plan and evaluating outcomes…’’ [13].

A 2014 review exploring patient–pharmacist communication styles [14] found that only eight of 31 studies provided evidence of a patient-centred communication model. This was noted as occurring primarily in specialty clinics and was practised by pharmacists with a specific clinical focus or with additional training, appearing to substantiate the prevailing perspective that in pharmacy,

PCC is closely linked to specialist skills and advanced cognitive services.

Have I experienced patient-centred care from pharmacists? PCC demands patient-pharmacist interaction, therefore necessitating pharmacist visibility on the wards. However, during 16 hospital stays I never encountered a pharmacist on my ward. I certainly identified medicine-related issues relating to e.g. nasogastric administration of medicines, the need for an alternate dosage form due to my inability to swallow tablets, unnecessary distress due to unacceptable delays after requesting medicine for an itchy heat rash, gastro-oesophageal reflux or nausea. These medicine-related issues, however, do not speak to the ‘‘how’’ of PCC, but to the ‘‘what’’—the type of problems a pharmacist could address. Questioning the absence of pharmacist input was also motivated by the daily visit from the specialist physician who was responsible for my overall care and medicines. Why not a pharmacist for overseeing the medicines? I often felt the need for someone within the system to speak on my behalf—to be my patient advocate—and felt how appropriate such a role would be for a pharmacist. On discharge, PCC was markedly absent at the outpatient dispensaries where I was often presented with the timeworn axiom ‘‘but the doctor prescribed this’’. Any meaningful interaction, in essence PCC, would have identified me as a patient post-oral surgery unable to swallow the prescribed tablets. Along with minimal eye contact and a distinct lack of warmth, I felt I was there to be ‘‘processed’’, not respected as a vulnerable patient with special needs. My operations and convalescence all took place 1000 km from my small home town and I was therefore unknown to the community pharmacists I encountered. I was ‘‘processed’’, mostly efficiently, but with little more than a rapid, impersonal repeat of the medicine-taking instructions, a process unlikely to be described as PCC. This markedly contrasts with the service and quality of pharmacy care I receive from my community pharmacist in my home town who is familiar with my medical history, greets me with a smile and is respectful of my needs. I feel acknowledged not merely as a patient in need of medicine, but as a vulnerable person in need of care. We have a good, trusting relationship which provides the foundation and the ‘‘space’’ for me to feel comfortable sharing my illness story with her as she is prepared to take the time to actively listen and to respond with empathy, usually discussing options with me—in essence exemplifying PCC. I do not believe PCC to be contingent on only advanced clinical

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expertise—it can be a component in any patient-pharmacist relationship. In support of calls advocating for closer attention to PCC in pharmacy [14, 15], I am left with some questions for our profession: •







Has pharmacy acknowledged the origin of the term PCC and the philosophy underpinning this concept within broader healthcare? Are we aware that our profession appears to interpret PCC differently from other health professions; is this deliberate and, if so, are we comfortable with this positioning? What is the relationship between PCC, and pharmaceutical care as defined recently in a paper published in this journal? [16]. Can PCC really only be offered by specialist or clinically orientated pharmacists?

In conclusion, and speaking to a 2014 paper titled: ‘‘Pharmacists need recognition as providers to enhance patient care’’ [17], I believe that an integrated, seamless understanding of PCC and the use of shared language within the health professions to describe this construct is essential in complying with one of the important principles of PCC; teamwork with both the patient and other health professions. Pharmacy should use this term consciously, in a manner that is consistent within the other health professions as, on behalf of patients, I believe that PCC should be universally understood to represent the same philosophy of and approach to care received from all healthcare professionals. Acknowledgments The approach taken in this paper to explore concepts and ideas relating to patients and the pharmacy profession were presented at the 2014 annual conferences of both the South African Association of Hospital and Institutional Pharmacists, and the Pharmaceutical Society of South Africa. A conference paper was subsequently published in the South African Pharmaceutical Journal and formed the basis of this adapted commentary. Funding

None.

Conflicts of interest

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None.

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Reflecting on patient-centred care in pharmacy through an illness narrative.

Patient-centred care (PCC) is rapidly adopting a central position in discussions on the quality of healthcare, with patient-centredness deemed essenti...
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