The health care industry accounts for a substantial and expanding portion of the U.S. economy. Funders of health care aim to get better value for their money.1 The pursuit of this so-called “high-value health care” has turned care into the means by which health care corporations achieve their industrial ends.2 Nowhere is this reality starker than in the industry’s sometimes-cruel response to patients with chronic conditions. Those of us involved in medical education must prepare the next generation of clinicians to reject the business logic at the heart of industrial health care and replace it with a commitment to careful and kind care for all.
The Burden of Treatment
Much of health care research, education, and practice is focused on fixing. Fixing is what we clinicians do when we resuscitate, operate, and cure. Yet, the most likely adult person to walk into our outpatient clinic lives with one or more chronic conditions—ongoing conditions that, regrettably, we cannot fix. Chronic disease has become increasingly common as a result of the expansion of what counts as disease; as a side effect of an aging population; and as a consequence of poverty, violence, and alienation.3 Patients living with chronic conditions define health as their ability to cope, adapt, self-manage, and thrive.4
Unable to fix, health care fixates on control. Evidence-based guidelines recommend lifestyle and pharmacological approaches to achieve targets of disease control (e.g., blood pressure or HbA1c levels). These targets are surrogate measures that do not reflect the experience of patients with chronic conditions such as hypertension or diabetes.5 For patients who have been diagnosed with several chronic conditions, multiple guidelines apply. These disease-specific guidelines are typically agnostic to patients’ other conditions and are blind to the personal and social context of their lives—for example, whether the patient lives alone or has adequate social support, is destitute or wealthy, has no access to reliable transportation, or is well connected to available resources.6 If clinicians do not tailor the suggested regimens, some patients receiving guideline-compliant care will experience adverse drug–disease and drug–drug interactions.7 Yet, payers, to ensure they get value for money, have developed policies that threaten clinicians who deviate from these recommendations with loss of reputation and income. The proportion of patients with diabetes at recommended HbA1c levels, for example, is used both as a publicly reported measure of quality of care and as a modifier of clinician compensation. As recommendations for care accumulate, the burden of treatment increases.8 Many patients must then shoulder an ever-expanding array of complex disease-related tasks. For example, some must implement and sustain diet and activity modifications, organize and take medications, self-monitor for efficacy and safety, and arrange and attend medical visits—all of which can match or exceed the demands of a part-time job.8
These demands, however, are okay for the industry. Under the façade of asking patients to take personal responsibility but blind to the extant treatment burden, the health care industry allots patients and their families an ever-increasing list of additional medical errands.9 Patients are expected to review videos about their condition; prepare for consultations with prioritized issues and questions; take notes or record their visits; access, interpret, and proofread their medical records; collect and transmit self-measured steps, sleep, and weight; review and pay bills; complete satisfaction surveys; take part in research; and keep loved ones informed and engaged. These errands, each alone perfectly reasonable at face value, collectively create an emotional and practical workload that overwhelms the capacity of patients and their informal caregivers.9
When patients leave medical errands incomplete, health care often responds by labeling them “noncompliant.” A “noncompliant” woman with poorly controlled diabetes who once again misses her appointment may also be a single mother who diligently cares for both her disabled child and her elderly parents while meeting all the expectations of her job. Rather than drawing attention to such patients’ problematic situations, the label “noncompliance” unkindly criticizes those who are in need and their character. Characterizing patients as noncompliant also sabotages the possibility of discovering, or inventing a resolution to, patient troubles. Instead, “noncompliance” unhelpfully triggers a cascade of more education, motivation, nudges, carrots, sticks, or treatments. These interventions often do little to improve patients’ situations, while frustrating patients and clinicians.
Yet, for clinicians to appreciate each patient and their situation during infrequent and brief patient appointments seems impossible. Clinicians afford patients 11 seconds to make their case10 before turning to the computer to focus on documentation and billing.11 Patients become a blur to these clinicians, who, burned out, no longer feel in charge of their practice, are unable to find mission in their daily work, and eagerly await their medical mission trip to an underserved locale. These are also the clinicians who discourage young persons from pursuing a career in patient care.
I believe overwhelmed patients and burned-out clinicians are products of industrial health care. In industrial health care, payers hold patients and clinicians accountable, expecting both to do their part to create value. Patients must be “engaged,” and “providers” must efficiently “deliver care” judged to be of “high value” for a population (but not for a particular person). Greed then extracts this value as corporate profits, either by inhibiting health care utilization (as payers do) or by promoting it (as companies that sell tests and treatments do). Patients and clinicians are caught between the frustrations of the former and the seductions of the latter. And as more value gets extracted, so too the pressures to produce more with less and to invest in profitable ventures increase. These efficiencies and investments improve industrial bottom lines but not the work of clinicians, nor the life and care of their complicated and “noncompliant” patients.
The Heart of the Matter
To respond to the challenges that patients face, clinicians must be able to see each patient in high definition—that is, understand the productive and detrimental interactions among their health, their care, their lives, and their loves.12 This understanding requires leaving behind efficiencies without effectiveness and replacing them with unhurried consultations, elegant in that they accept neither waste nor haste. In these consultations, a patient and a clinician collaborate to respond to the patient’s particular situation with an evidence-based plan that takes into consideration this patient’s values and preferences: a plan for this patient, perhaps deviating from what is recommended for patients like this. Then, systems need to implement the resulting plan reliably and safely, applying technology able to support care without interrupting it.
Clinicians should diagnose an imbalance of workload and patient capacity instead of noncompliance.13 Interventions to reduce patient workload or support patient capacity would then follow. De-prescribing, shared decision making, and continuity and coordination of care could help reduce patient workload. Coaching and self-management training could be deployed to support capacity; palliative care to manage fatigue, insomnia, dyspnea, and pain; physical and occupational therapy to mitigate disability; and social work to mobilize community and financial resources. The optimal caring response must be both minimally disruptive and maximally supportive: helping patients adapt, cope, and thrive while minimizing the burden of illness and treatment.
Where Hope Lives
Just as industrial health care underinvests in social work, rehabilitation, mental and behavioral health, and palliative care, the medical curriculum and major medical textbooks include little to nothing on the work of being a patient or on the burden of treatment. This omission may go unnoticed in a curriculum increasingly primed to train health care providers who are savvy about the health care industry. These trainees will become high-income earners (which justifies obscene medical school tuition payments) who will be focused on population health, adherent to guidelines, efficient during brief appointments, adept at improving satisfaction scores and billing, and technically gifted at fixing.
The omission of patient burden, however, would be unacceptable in a curriculum that prepares clinicians and policy makers to resist the pressures of misplaced standardization and efficiency, to circumvent policies that cruelly harm those seeking relief, and to overcome the corruptions in caring that stem from greed. Resistance, however, is neither sufficient nor sustainable. Patients also need a cadre of clinicians ready to pursue the longer-term project of definitively turning away from industrial health care toward careful and kind care for all.
Patients need professionals who can help effect a fundamental change in what counts as health care, who value care more than they care for value, and who stand up (rather than look around the room) when asked who is in charge. We need a new generation of leaders who can ensure that care is not the means by which health care satisfies its industrial mission, but the end for which it exists and for which it mobilizes its means. We need a generation of innovators who can design practices able to support elegant care, who can help clinicians find mission and renewal in caring for and about their patients. We need a generation of clinicians, humbled by the privilege of the bedside, who can turn away from the profits of industrial health care and build in its stead a system fueled by solidarity, not greed, capable of love, not cruelty. These are the clinicians that schools must place as role models before their students. Imagining this alternative to industrial health care and working to realize it may just be the most important reason young people need to pursue a career in patient care. This is the awesome calling in front of us: We must bring about careful and kind care for all.
Acknowledgments: For their valuable and generous feedback (without implied endorsement), the author thanks Maggie Breslin, Juan Pablo Brito, Kathryn del Valle, Natalia Genere, Fred Hafferty, Ian Hargraves, Anja Fog Heen, Brian Kilen, Marleen Kunneman, Christina LaVecchia, Aaron Leppin, Paige Organick, Sara Segner, Kerri Sperling, Stephanie Starr, Claudia Tabini, and Anjali Thota.
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