Lifeworld…is the background of ordinary life: mainly private, somewhat naive and biased, but also authentic and essential to our satisfaction as human beings.
Health problems happen in the “lifeworld” – the deeply individual, imperfect, meaningful and authentic experience each of us has living in the world. The way our health care system is designed, however, makes it hard for even the most engaged patients to bring their lifeworld with them into the health care world.
Even when patients are expertly coached through treatment choices and offered the best that evidence-based medicine (EBM) has to offer, they may have trouble reconciling what they take away from clinical encounters with their lives outside of health care. Ironically, evidence-based medicine – the marriage of clinical research and the experience and expertise of clinicians to improve the safety and effectiveness of care – may seem especially out of step with the real-world challenges patients face.
When patients need to decide about a course of treatment, for example, they may find that guidance from EBM, while helpful, runs counter to their needs in the lifeworld, as if the right hand knows not what the left hand needs. Knowing that a certain option has been clinically proven to deliver a good outcome is important. But that outcome may or may not match the patient’s goals. Or the treatment regimen may be unrealistic given the patient’s lifeworld circumstances and preferences. That these conflicts exist is not surprising; it’s disappointing that the disconnect persists even with increased attention to patient satisfaction and patient centeredness.
Undergoing treatment, many patients feel they’ve entered a separate, parallel universe, and in many ways they have. With some exceptions, patients can’t just leave their lifeworld behind, nor would most want to. The problem is that the health care world doesn’t adequately take the patient’s lifeworld experience into account when planning and evaluating care. Patients and lay caregivers are often left to figure out what to do on their own. Even in organizations that practice “patient-centered care,” information and options tend to be presented from the medical establishment’s perspective, which is often out of synch with the rest of the patient’s world.
The Evidence-Based Medicine Bias
I first encountered the word “lifeworld” in an article about the mismatch between evidence-based medicine and the lifeworld of patients. Five authors with significant experience in health care as patients, family caregivers, teachers and researchers, have written about the tension between the medical establishment and the everyday lives of patients in the context of evidence-based medicine.
The evidence in evidence-based medicine is the result of clinical research – traditionally the realm of randomization and generalizability. The higher we go on the heirarchy of evidence, toward stronger indications that an action or treatment is effective, the farther away we travel from the messy, unpredictable lifeworld. For the good of the population and individuals in general, strong evidence for treatments and procedures is crucial but not sufficient guidance for medical decisions. Individual patients and their friends and family members must negotiate all manner of personal details when choosing among treatment plans. Rarely does the experience of a disease in the real world match the disease as presented in research.
The authors identify six ways in which EBM is “biased” toward science, often at the expense of the lifeworld experience of patients. They are careful to say that the bias is rooted in the scientific paradigm of EBM, not necessarily in the clinicians who practice it. While there is no easy fix to this complex problem, awareness is a good start, for both patients and their care providers.
Bias 1. Most published research lacks input from patients. There are efforts underway in the U.S., U.K. and Canada to involve patients in all stages of planning, funding and evaluating research.
Bias 2. EBM’s hierarchy of evidence undervalues the experience of individual patients. The “lower” levels of evidence, including case reports, providing context and information that may be helpful in individual cases and balance the science of EBM.
Bias 3. Tools used for shared decision-making tend to be biased toward “objective, scientific management” of disease. Using them as a sole source of information may not adequately take into account the patient’s preferences and experience. Decision-making tools can be helpful to patients but should be used ideally as an informational support in the context of a clinical relationship based on personal understanding. The authors note, “…the success of the evidence-based consultation depends on its humanistic elements as much as on what information is shared and how.”(p5)
Bias 4. An imbalance of power can suppress the patient’s voice. Even engaged patients equipped with understanding and a desire to participate may find it difficult to overcome the system’s bias toward the knowledge and experience of clinicians.
Bias 5. Shared decision-making is often limited to the dyad of clinician and patients. Many patients rely on the tacit knowledge of friends, family members and support groups (formal and informal) in addition to their clinicians for feedback and guidance. The authors observe that the two worlds – EBM research findings and patient-focused collaborative communities – are “developing separately rather than in dialogue with one another.”(p7) Stitching the two worlds together is not easy.
Bias 6. EBM focuses on those who are sick and seeking care and doesn’t take into account the experience of those who need care but are not willing or able to access medical services. Not only does this mean people are going without needed care, it also keeps their experiences hidden from measures of care quality.
Despite the challenges, patient and their families do succeed in working with clinicians and designing care plans that can be incorporated into their lifeworld and fulfill their goals. Contributors to this blog come to mind — Danny van Leeuwen, for example. If you know of others or have a personal story to share, we’d love to hear from you.
This post was first published on EngagingPatients.org on February 27, 2019.