By Ruby Shanker
Despite strides made in research and clinical practice of Western medicine to improve the management of illness trajectory, the rising utilization of complementary medicine among persons living with chronic illnesses can be baffling to clinicians. “I have so much to offer my patient. Why would they turn to complementary therapies?” Such a query requires thoughtful reflection on the living experiences of persons with chronic illnesses.
Receiving a chronic illness diagnosis can be a life-altering event. Whether relating to cardiovascular, respiratory, endocrine, or autoimmune conditions, the patient experience literature describes expressions of helplessness, frustration, and loss of control. Diabetes and chronic renal failure feature prominently in patient experience discourses where the overall management tends to be described as hijacking one’s life choices. Hemodialysis up to a few times per week means heavy-duty time commitments for individuals who then worry about disruptions to employment, financial well-being, care of dependents, and sometimes unstable housing. Clinic appointments, transit woes, chronic fatigue, and depression can interfere with the ability to engage in meaningful relationships, and may even rob from younger individuals a carefree childhood or youth. These impediments significantly impact the individual’s ability to exercise relational autonomy, or sense of self and determination based on how one situates themselves within meaningful social relations.
Diet restrictions can be devastating when unable to savor foods that one attaches to comforting memories and cultural identity. The presence of highly involved family members can be a boon for support, but also a bane for those dreading loss of independence. Stigma attached to chronic illnesses or attributions of personal responsibility for acquiring what are deemed lifestyle illnesses may force patients’ to keep their illness hidden leading to social isolation. Being reduced to merely an identity of illness is a constant nightmare. Loss appears embedded in the narratives of patients with chronic illness, almost as if one may be continually grieving.
Systemically, our labyrinthine healthcare system isn’t the easiest to navigate or flexible for those trying to live a life beyond their illness. Inequitable access to nutritious yet affordable foods disadvantage those from lower socio-economic backgrounds or geographic food deserts. Patients may experience discrimination based on their identities of race, ethnicity, gender, sexuality, and/ disability. Clinical teams may be perceived as unyielding authorities of power that dictate care, impacting patients’ willingness to trust information provided for crucial healthcare decisions. Unsatisfied with care and yearning for more control over life choices, it should not be a surprise that patients living with chronic illnesses may at some point be drawn to explore the benefits of complementary medicine.
Complementary medicine ranges broadly across diet, body techniques, and energy therapies. Most are philosophically oriented towards holistic approaches to lifestyles, and sometimes offer a centering sense of identity where there is cultural familiarity. However, patients may be enticed to unregulated complementary medicine for unsubstantiated symptom relief, promises of less restrictive diets, or speciously, for “a cure”. Concerns here are ethically justified in terms of potential harms. Ingestion of certain herbal therapies have been known to cause severe drug interactions and sometimes fatal organ failure. When performed poorly, manual manipulation can inflict musculoskeletal injury, worsen vasculitis, and cause internal bleeding. Unbridled hope for “cures” can prevent appreciation of declines, acceptance of scam therapies, and cause moral distress to those involved in caring and supporting the patient.
There is certainly need for more prospective, large-scale, and validated research on the efficacy of complementary therapies, as well as better regulation of standards to instill confidence in clinicians wishing to encourage integration. In the interim, the Internet continues to serve as a vortex of free, readily accessible and unverified information. In comparison, validated research on western medicine remains beyond the reach of patient populations behind journal pay-walls. How can we expect patients to unconditionally trust the healthcare system when we live in different information universes?
Yet offering copious amounts of evidence based information on western medical therapies is insufficient, and may convey resistance to differing worldviews. Further, patients may be reluctant to disclose use of complementary medicine for the fear of being judged. That individuals with chronic illnesses perhaps look to complementary medicine as better avenues for compassion, trust, and sense of hope because they are embraced as persons beyond their illness, is a somber realization of the gap between the intent and the impact of the care we offer.
As philosopher Onora O’Neill reasoned, trust must be earned by first proving one is trustworthy. Clinicians who invite non-judgmental dialogue on use of complementary medicine express attentiveness to their patients’ interests, proving efforts towards trustworthiness. Exploring the patient’s notions for hopes and quality of life can allow for sharing of care expectations. Persons living with chronic illnesses may interpret benefits and risks differently as they endure interventions with a higher degree of invasiveness and frequency than most patient populations. While clinical teams may be oriented towards long-term improvements, patients with chronic illnesses may focus on short term wins that contribute to their on-going quality of life. Involving an ethicist can be fruitful where clinical teams, patients and their families wish to recalibrate understanding, and holistically integrate approaches to strengthen trust within the therapeutic relationship. Life with a chronic illness does not have to be about loss or isolation. It can be a narrative of persisting on new and empowering journeys beyond an identity of illness.
Ruby Shanker is the Bioethicist for the Toronto General Hospital (University Health Network) and Women’s College Hospital, an Adjunct Lecturer in the Dalla Lana School of Public Health, a PhD student in Health Professions Education Research at the University of Toronto Institute for Health Policy, Management & Evaluation, and a Member of the University of Toronto Joint Centre for Bioethics.