The right to be sick

The right to health is one of the most widely proposed and debated positive rights in western society, one that has been increasingly embraced by governments, the medical community and the broader populace over the past 75 years. Starting with Norway in 1912, nearly all western industrialized democracies—the United States being the one glaring outlier—have adopted some form of universal healthcare coverage for their citizens. The Constitution of the World Health Organization embraced the “right to health” in 1946, a principle included in the Declaration of Alma-Ata (1978) and the World Health Declaration (1998). ¹ At the same time, many individuals across the globe face structural barriers to adequate medical care that prevent them from achieving maximum levels of productivity and fulfilment. Among the most serious of these obstacles in developing nations are insufficient financial resources, limited infrastructure, shortages of basic life necessities, and political instability. ² In western democracies, systematic racism continues to limit meaningful healthcare access. ³ The importance of surmounting these hurdles cannot be overstated and progress in these areas is to be extolled. Unfortunately, the “right to health” can all too easily spawn a concomitant ethical or legal obligation to exercise that right whether or not one wishes to do so. What follows is a discussion of this pernicious process and a call for a recognition of a parallel “right to be sick.”

Many individuals choose, for a wide range of reasons, not to pursue healthy living and medical care as understood by allopathic physicians and western public health officials. “Health” is frequently weaponized, either intentionally or unwittingly, against these dissidents.^4,5 Often, the very populations which have historically been prevented from obtaining meaningful access to medical interventions are now re-victimized by an ideology of health that allows limited opportunity to decline the same services previously denied to them. When these individuals are permitted to refuse unwanted medical treatment and health measures, doing so often comes with negative judgment on the part of physicians. In some circumstances, as discussed below, the “right to health” evolves into a legal duty. In many other situations, this right manifests itself more insidiously as a moral exigency or societal expectation that leads to stigma and duress for those who willfully remain unhealthy. On occasion, this stigma may even result in less access to aspects of healthcare these individuals do want.

Needless to say, societal interests may offer compelling arguments for overriding individual autonomy regarding certain medical decisions. For instance, the threat of communicable diseases might justify compulsory vaccination. Severe psychiatric illness may offer an ethical basis for involuntary treatment to prevent violence. On a systemic level, one might argue that participation in a jointly funded healthcare system creates an ethical duty to avoid volitional behaviors likely to increase collective expenditures unnecessarily—although consensus regarding precisely which behaviors are to be eschewed may prove elusive. These issues, often nuanced and challenging, are beyond the scope of this paper. Also beyond the scope of the following discussions are efforts to define sickness and health or to draw distinctions between these two much debated terms. For the purposes of the following discussion, what matters is that, whether subjective or objective, a concept of health exists in the views of physicians that they wish to provide to, or impose upon, patients. In short, the goal of what follows is to advocate for a patient's “right to be sick,” as understood by physicians, in situations in which such a right does not infringe upon the wellbeing of others or society as a whole. Such a right is related to, but distinct from, the principle of autonomy. In legal terms, the right to refuse unwanted care and the “right to be sick” may place similar restrictions upon physicians. However, conceptualizing sickness as a right—a right as fundamental and valid as a right to health—holds out the promise of reshaping for the better how healthcare professionals interact with patients.

The choice to be “sick”

Rational individuals may choose to decline health interventions for a range of reasons. First and foremost, they may not consider themselves to be “sick” at all. That is not to say that they deny the empirical facts of a condition, but rather that they reject its subjective classification as a sickness. Medical history abounds with such classifications that have since been rejected. Antebellum American psychiatrist Samuel Cartwright classified African-American slaves seeking freedom as being afflicted with “drapetomania.” ⁶ From the mid-twentieth century until 1973, the psychiatric community branded “homosexuality” as “pathological.” ⁷ Spiritual visions in one culture may be “brief psychotic disorder” in another. What must be emphasized is that those who refuse “treatment” under such circumstances do not question the underlying fact pattern (e.g. a desire for freedom, same sex attraction, etc.), but rather its categorization as morbid. Similarly, public health authorities may declare war on phenomena, such as obesity, that do have implications for physiology or life expectancy, but which some individuals who display these phenomena merely consider to be normal variants. In contemporary western society, for instance, obesity is a health crisis for some and a source of identity and pride for others. ⁸

Other individuals may choose to be “unhealthy” because they weigh the risks and benefits of particular actions differently. Smoking tobacco significantly reduces life expectancy. ⁹ At the same time, many smokers find the habit to be highly pleasurable. Comparing the value of living longer against enjoying one's life is an inherently non-scientific endeavor. The same calculus applies in clinical care. For some patients, the side effects of medication do not justify the “health” benefits of treatment. Turning down dialysis or a life-preserving transplant may seem inexplicable to doctors, but perfectly sensible to a patient with different values or priorities. Occasionally, one individual's pathologic symptomology is even another's source of joy or relief. For example, some patients with schizophrenia who experience auditory hallucinations develop “rich relationships” with these voices and view them through a positive lens. ¹⁰ Rejecting a neuroleptic agent intended to suppress voices that one cherishes as close friends is a perfectly logical choice for these patients, even though doing so challenges the norms of western psychiatric care. Of course, not all patients who choose to be sick do so for rational or coherent reasons; however, many such choices are grounded in the same logic that physicians use to justify treatment.

The medical gaze

Social scientists have long recognized that physicians view their patients through a distinctive professionalized lens. ¹¹ Many future doctors are initially drawn to their calling by a desire to heal their fellow human beings, a goal reinforced by years of training and apprenticeship. While contemporary medical ethics places considerable value upon patient autonomy, few young people are drawn to the medical field by an abstract wish to facilitate autonomy—and probably none by a desire to watch passively as their fellow human beings suffer or die from remediable conditions. In the same way that the Maslow's proverbial man with a hammer sees all challenges as nails, many physicians view patients in terms of diseases to be treated and health attributes to be improved. Under such circumstances, the age-old ethical tenet of “nonjudgmental regard” ¹² yields to the ingrained biases of the medical profession.

In theory, contemporary bioethics emphasizes both the values of autonomy and beneficence. In practice, of course, these two principles often stand in opposition to each other. While the law in a particular case may prioritize autonomy—as it does, for example, when allowing capacitated patients the right to refuse life-saving medical care—that does not mean that physicians themselves are without biases toward beneficence in many of these same circumstances. In the extreme, respecting such autonomy can cause providers moral distress. ¹³ The principle of autonomy requires physicians to honor the “wrong” choices of patients, but does not require neutrality regarding those choices. Medical professionals may grudgingly concede that patients have a right to refuse care, but they do not esteem such decisions. The notion that the patient may have a “right to be sick” is entirely alien to the thinking of many doctors.

Clinical implications

The consequences of imposing a medical gaze upon a dissident patient are not benign. Rather, this lens impacts many aspects of clinical care. At the most extreme level, some physicians will prove overtly judgmental, questioning patient choices under the guise of education. While physicians are certainly entitled to their personal opinions, and to share them outside the clinical context, the distinctive nature of the physician–patient relationship with its inherent power dynamic creates additional ethical responsibilities. Providing sufficient data for patients to make informed choices is certainly one element of a physician's role, but the line between delivering helpful information and expressing disappointment in those who choose to use it differently can prove thin. Gratuitously urging a patient to lose weight or quit smoking at every visit may serve public health ends, but at the expense of respecting the patient's choices. Negative judgment may also be communicated unwittingly. A clinician who views a patient's choices as detrimental may strive to appear nonjudgmental, but may nonetheless convey a disapprobrium through word choice or body language. A remark as seemingly innocuous as, “You’re still smoking,” said in a particular tone, delivers a message. In response to these negative reactions by clinicians, some patients may avoid care entirely. The patient who is ashamed to encounter his physician after nonadherence to medication for hypertension may delay visiting that same provider if he experiences intermittent chest pain. The cumulative effect of unwanted counseling, unsought referrals and relentless motivational interviewing may leave a patient feeling unheard and misunderstood.

Imposing the medical gaze on healthcare dissenters can have even more malignant consequences when medico-legal issues arise. Current ethical norms require that when assessing decisional capacity in clinical care, “an individual is presumed to be competent unless demonstrated to be otherwise”—a principle reflected in the Mental Capacity Act in Great Britain and a combination of common law and statue in the United States. ¹⁴ In practice, patients are all too often expected to prove their capacity by demonstrating specific skills. ¹⁵ Similarly, many jurisdictions and institutions require a so-called “safe discharge” plan prior to departure, overriding the choices of patients to leave in situations that the clinical staff consider dangerous.^16,17 The well-resourced patient may combat such requirements and ultimately find vindication in the court system, but not without considerable delay and distress; many patients with more limited economic and social capital end up yielding to the preferences of their caregivers. Exiting a hospital “against medical advice” is itself often a challenging and stigmatized process. The problem here is not the letter of the law, which often favors abiding by patient choices that strike providers as highly unwise. Rather, the perspective of these providers shapes how facts are interpreted and decisions are rendered.

Toward a “right” to be sick

The “right to be sick,” as advanced in this paper, is neither a novel legal standard nor new bioethical principle—the two being reflected already in the right to refuse care and decisional autonomy respectively. Rather, “the right to be sick” is a mindset. That should not render its value any less significant. The ethical importance of “naming” in such areas as diagnostics is widely recognized; what physicians call something—if they have a term for it at all—shapes their understanding of it. ¹⁸ Recently, the medical community has come to acknowledge the significance of explicit labeling to draw attention to moral lapses, most clearly in areas such as scientific racism and the “whitecoat washing” of human rights abuses.^19,20 Reframing disparate ideas related to the right to refuse care, the importance of nonjudgmental regard and respect for decisional autonomy under the broader construct of the “right to be sick” may, over time, reshape the attitudes of physicians towards those individuals who reject their guidance. By accepting the “right to health” and the “right to be sick” as parallel rights of equal validity, medical professionals will be able to meet their patients where they find them—rather than where they would like them to be. At the same time, the “right to be sick” must not replace or undermine the “right to health” and should certainly not be allowed to convey to patients that they should tolerate conditions that require complex or expensive interventions. A just society will ensure that both rights are preserved and that neither is permitted to encroach upon the other.

Changing minds rarely occurs without concrete action. Although how to operationalize this reconceptualization is not the focus of this paper, a non-exclusive list of first steps toward this goal might include: (1) incorporating the “right to be sick” as the subject of didactic material in medical school and devoting meaningful time to the concept and its application; (2) including the “right to be sick” in patients’ bills of rights and other documents posted on hospital walls and shared with patients, so that they come to understand their choice to decline care as a “right” and thus feel empowered to do so; (3) adding the “right to be sick” to codes that advance the “right to health,” including those of professional organizations and international bodies. Medicine is often a “healing” profession, which is what many patients desire, but it would better be framed as a “helping” profession—offering healing to those who seek such treatment and respecting those who do not wish to be “healed” on allopathic terms.

Conclusion

This paper is not intended to encourage patients to reject allopathic medical treatment or to discourage clinicians from providing it. The many medical “miracles” available today to those who have access to them are cause for celebration. Nor is the purpose of this paper to question laws requiring medical care when refusing care places the public welfare at risk; such an outcome is neither sought nor desirable. At the same time, calling for a “right to be sick” is not merely the rebranding of established ideas. Words matter. Decisional autonomy and the right to refuse care are rather sterile, abstract concepts that may reshape what physicians do, but not how they envision what they do. Openly acknowledging a “right to be sick” is a next crucial step in the long journey from the paternalism of the past to the patient-centered care of the future.