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Presentation by Elke Grenzer, Vice President of the Patients' Association of Canada, as part of the panel: 'An Organized Patient Voice for Primary Healthcare,' presented in partnership with the CHSRF at the CIHR Primary Healthcare Summit, 'Patient-Oriented Primary Healthcare -- Scaling Up Innovation', in Toronto, on January 19, 2010.
First of all, thank you to CHSRF for inviting us here today. I would like to extend a discussion we initiated in the fall of last year about engaging the patient voice as a way of influencing the Canadian health care system. We are especially happy to contribute to this conference since the changes we seek are related to the special possibilities that primary care offers for humanizing the tension between one’s medical record (which is often distributed across different institutions and care providers) and the opportunity that a strong relationship with one’s family doctor creates for making sense of one’s personal medical biography. Our understanding of our health can be affected by improper diagnoses; by the conditions of our illness; and by the unpredictable ways in which symptoms, treatments, and emergency situations affect our judgment. When we add to this the ways that health and illness management can be confounded by specialists and a fragmented health system, it becomes apparent that primary care doctors are at the forefront of patient care, but cannot bear the responsibility alone.
One of the most striking things about the Patients’ Association of Canada’s meetings and the way that we have collectivized as patients is that we have had the opportunity to talk in a sustained way over time about our encounters in the health care system and about our experiences as patients. In the past two years, our commitment to organizing a patient voice has deepened, and it is particularly edifying to hear my panelists all agree that the patient voice is excluded from the health care system and that we must urgently attend to the gaps. We have all reached the same conclusion, despite our different fields and our respective positions as physicians, patients, researchers, and advocates.
From Dr. Dawes, we gain insight into a fragmented health-care system that systematically ignores the needs of patients, particularly when primary care workers are forced to act as technicians rather than teachers, mediators, and even healers in their family practices. Dr. Fuks offers a distinctive picture of how medical education too often excludes pedagogies that engage the point of view of the patient and the need to attend to the very difference between medical science and the consultation between doctor and patient. Elsewhere, he has written about the rhetorical devices we use to talk about disease and how this rhetoric reveals some of the fundamental ways we systematically eliminate the patient’s voice. For example, when we use militaristic metaphors by referring to a “war†on cancer, we limit our conception of disease to that of an “enemy†that must be defeated with an arsenal of “weapons.†This is a telling instance of how the patient’s point of view is lost to a science that conceives of illness as a battlefield. In his talk, Andre Picard collects some of the serious ways in which the patient voice is externalized and proposes health-care reforms that position patients as people having needs and moreover by aligning those needs more with customer care than with the demands of a faceless bureaucracy.
The Patients’ Association of Canada does not disagree with the problems outlined here and we treat these as openings for thinking about and strategically engaging the needs of patients. As patients, we have had to contend with a system that is driven by increased specialization and expanded forms of technological testing and diagnosis, but that also relegates the quality of our experiences to marketers who use a corporate model of satisfaction and service. Our work begins with the question, how can we chronicle the lived experience of the patient in a way that doesn’t just note dissatisfaction in the way of the survey, but includes instead the different registers of the eventfulness of being a patient? What I would like to suggest today is not that we dismiss our discontent and frustrations; in fact, the Patients’ Association of Canada is rooted in an earlier organization that acted as an outlet for patients to gripe about their experiences. And yet, the Association has developed beyond griping and now envisions ways to transform the alienating and destructive ways medicine is practiced Our core members have done more than vent their disappointment with a failing system, and have instead challenged one another from within their respective fields in health and medicine. We have tempered our understanding of our own encounters with the health system according to our various experiences as nurses, consultants, health policy workers, statisticians, physicians, former Hospital CEOS, lawyers, obstetricians, playwrights, professors, and researchers in the humanities and the sciences. More importantly, the Patients’ Association allows us to accomplish something that we haven’t achieved within our respective fields: to speak from the position of our experience as patients. At the core of our purpose is a simple view: the patient perspective must be provided by patients and not by focus groups, surrogates, or experts who speak on our behalf.
As an organized movement, we are aligned with some of the developments in patient-centred care. We subscribe, for example, to the notion that the patient is not an object to which medicine is merely “administered.†We also recognize that the practice of doctoring can never live up to the fantasy of a perfect transmission or communication but will always remain an imperfect translation between doctor and patient. The consultation, or what we might call the scene of communication between physician and patient, has the capacity to break down and to rebuild itself according to different interpretations, varying perspectives, different socioeconomic levels, gender, ethnic background, circulating ideas about what constitutes health, well-being, education levels, etceteras. It is therefore particularly important that the voice of the patient is not taken for granted as a monolithic voice. However, when we examine the fairly recent shift to patient-centred care, the patient experience is often glossed over, despite all of the good-hearted attempts to empower patients to manage their own care. This focus on autonomy, while welcome in some respects, nevertheless ignores the elementary situation of the patient: we are sick, and some of us are traumatized by a system that has failed to listen, made mistakes, lost records, cancelled appointments, and has abandoned us to an indifferent bureaucracy of care. Often, the emphasis upon patient-centred care places the burden upon patients, families, and friends at a time when they are most vulnerable and most in need. I want to flag this concern as we consider the distinction between physician-centred care and patient-centred care offered by Laine and Davidoff nearly fifteen years ago (JAMA Jan 10, 1996). They ask us to consider an example of a woman whose routine examination reveals a malignant breast mass:
In a physician-centred era, the physician might have told the patient that she had a ‘lump’ and would have proceeded with the evaluation. After evaluation and biopsy, the lump might still have been euphemistically labeled a ‘growth’ or ‘cyst’. The patient would undergo surgery and awaken following a mastectomy to which she may not have specifically consented. Still, the physician would skillfully avoid using the term ‘cancer’ to explain the reason for the mastectomy. The success of the procedure would be measured by survival time or tumour size after treatment. Her physician might have scolded her for being non-compliant if she missed appointments for her radiation treatment. She might have been allowed little choice in the specifics of her terminal care, and she might not have been aware that students and residents participated in her care. Her physicians would have been assured that they provided high quality care if they followed a physician-generated checklist defining ‘standard of care.’ In a patient-centred age, professional responsibility dictates that the physician tell the patient the true diagnosis. The patient might inquire about estrogen receptor status after reading about her illness. The physician would discuss the various treatment options with the patient. She is likely to sign an extensive consent form for the treatment selected. The success of her treatment would be measured in units of functional status and quality of life as well as years of survival. Hospital staff would elicit her wishes regarding terminal care…Prior to discharge, she might complete a survey about her care and she might evaluate the performance of trainees in her care.
Now, from this example or contrast, it may appear that we can trace a transfer of power from doctor to patient, and we can also note that patient-centred care emphasizes the agency of the patient. We can glean from this example that patients are emancipated because we are now endowed with the capacity or capability of being informed, of doing research, of asking for specific treatments, and of making determinations about appropriate courses of action. We are no longer in the field of paternalistic care per se, and we have moved from a form of decision making based on the notion that “doctor knows best†towards a model that values self-sufficiency and that positions the patient as the primary agent of his or her care. Yet, following Foucault, we must note that the power relation doesn’t disappear; in Foucauldian terms, it becomes invisible but doesn’t go away. Which is to say that even though the power relation may not be as self-evident as that involved in paternalistic care, the patient-centred model nevertheless disguises the increased responsibility placed upon the patient to negotiate the thickets of medical information, opinion, and advice involved in the consultation and treatment process. In other words, autonomy is prescriptive here and operates within the confines of a system that demands more of the patient and offers less in the form of care.
We need to expand participation to include the possibility both for patients to speak up and for questions of governance beyond self-management. This expanded participation would require patient representation on various public and private health-care committees, ethics approval boards, hospital boards, and policy groups. We all know that primary care is important and requires reform, but the challenge remains for us to rethink our models, including patient-centred care, to include the possibility for translation between the physician and patient, from patient to physician, physician to specialists, and patient to patient. If we conceive of patient centred-care as something done to and for patients, then we run the risk of supporting a more insidious form of paternalism.
As a public forum, the Patients’ Association of Canada creates the possibility for people to come together and bring their particular experience to bear upon a better understanding of what an improved experience entails for all those that have a stake in health care – from professionals to policy makers and researchers. To this end, it is essential that patients have an opportunity to speak about their experiences in a way that effectively influences the various ways that health care in Canada is organized, funded, and implemented. The patient experience must be included at every level of health-care practice: at the level of the clinic, the hospital, the health record, and policy-making. According to these imperatives, the Patients’ Association has initiated a range of research activities, including gathering, analyzing, and publishing patient narratives; using standardized professionals (actors) to help patients engage with the health system; and commissioning health policy research. Our membership is growing, and as we prepare for our official launch later this year, we encourage dialogue from all who are interested in improving the health experience.