Margot S. Witte
Alex Vaughan Williams
I consider the question of whether or not it is permissible to intervene, given a particular medical condition. Typically, we argue that healthy conditions do not permit interventions, while disease conditions do. In this paper, I argue that the distinction between “healthy” and “diseased” is too slippery to be practically useful, and suggest that we should do away with it in clinical practice, substituting a model of asking whether an individual needs help.
Every time a physician faces a condition in clinical practice, they must determine whether or not to intervene. This is an ethical question: “When ought I to intervene?” The centrality of the question in the practical world means that it merits philosophical consideration. In this essay, I will be focusing on the distinction between conditions for which intervention is permissible and conditions for which it is not permissible. The first category of conditions can be further divided into conditions for which intervention is required and conditions for which it is merely permissible, but I will not be addressing this second distinction. It is also important to note that I am concerned in this paper with the question of whether or not intervention is permissible, not whether or not a physician will intervene. The answer to the second question relies on issues like resource allocation and standard practices, which are outside the scope of this paper.
The distinction we draw between conditions that do and do not permit intervention ought to align with our general intuitions. There are two main reasons to pick an intuitive distinction over an unintuitive one. First, intuition is acceptable evidence in ethical decisions. We can see one simplistic reason for accepting this by considering ethical propositions that we take to be true independent of ethical analysis. For example, someone who isn’t familiar with moral theory would say that, all things being equal, it is worse to kill indiscriminately than not to kill indiscriminately. This person’s primary evidence is their moral intuition, and we think that they are justified in their conclusion. The second reason we should accept intuition as evidence in finding a normatively useful distinction between conditions that permit and do not permit intervention is that we require a practical theory. The intention of this distinction is for it to be used practically by real physicians in real clinics. If the distinction goes against general moral intuition, it will not be followed by the majority of physicians.
Often, the distinction between “health” and “disease” is used to make decisions about intervention, where intervention is permissible in the case of disease and impermissible in the case of health – or, in some theories, we should be agnostic about whether to intervene in cases of health . The primary purpose of this paper is to investigate how helpful this health/disease distinction is and whether we need an alternative. I will consider various conceptual analyses of disease and see which, if any, are most helpful. Just as there are different definitions of what qualifies a state as diseased, there are different definitions of what qualifies a state as healthy. The World Health Organization defines health as more than just “the absence of disease and infirmity.” It is also a “complete physical, mental and social well-being” that every human has the right to. This creates three categories: diseased, healthy, and an in-between category, in which people are neither diseased nor infirm, but lack complete well-being. Because I am focused on whether health/disease distinction works to guide us in determining whether or not it is permissible to intervene, a situation with only two options, I will be discussing the theories that have only two categories: healthy and diseased.
The first part of my paper will be concerned with different versions of the health/disease distinction and specific counterarguments to each distinction. I will then consider the possible problems that arise from using the health/disease distinction, however it is drawn, to make the normative decision about whether or not it is permissible to intervene. Finally, I will propose another way to make this distinction and evaluate the shortcomings and potential areas of further investigation for this new theory.
The “Health”/“Disease” Distinction
There are three primary approaches to conceptualizing disease: naturalism (sometimes called objectivism), constructivism (sometimes called normativism), and the relatively recent addition of embedded instrumentalism. In this section, I will consider these three theories of disease and analyze their abilities to provide necessary and sufficient conditions for disease, with the assumption that if there are serious weaknesses with the theory as a definition, it is not advisable to employ it as a normative guide to distinguish between conditions that do and do not permit intervention.
The first theory I will consider is naturalism. Naturalists believe that the label “disease” represents an objective, intrinsic category of conditions and that we can determine whether a condition falls into the category by making empirical observations. Proponents of the theory claim that it is completely value-free and non-normative. Dominic Murphy summarizes naturalism with a two-step classification system meant to determine whether a condition is a disease. The first step is to determine whether a biological organ or system is malfunctioning. The second step is to determine whether the malfunction is harmful to the person it is affecting. As Murphy formulates naturalism, a condition is a disease if and only if the answer to both questions is yes. Most accounts of naturalism follow a similar structure, even if they do not break it down as clearly as Murphy.
There is some variation within naturalism about what counts as a “malfunction.” While some theorists appeal to a common sense notion of “functioning,” most argue that a system is functioning if it is working in the way it was evolutionarily intended to work. Under this definition, the structure of the eye was naturally selected for because of its ability to pick up a given range of wavelengths and activate the optic nerve in a given way.
Christopher Boorse, a major figure in naturalism, argues for what he calls a “Bio-Statistical Theory” of what qualifies as normal functioning. He claims that, for any system, we can determine a species-specific standard based on a reference class with an acceptable level of variation. If a particular organism’s system significantly varies from the standard, it is malfunctioning. So, if an eye fails to pick up a wavelength that the statistically standard eye in the appropriate population picks up, it would be considered malfunctioning. Boorse defends his Bio-Statistical Theory on the grounds that it allows us to determine whether or not a system is malfunctioning in an objective manner without inserting our own beliefs about what constitutes “normal.”
The philosopher Elselijn Kingma points out that naturalism, especially as formulated by Boorse’s Bio-Statistical Theory, is not at all free of subjective value-judgments. She claims the organisms that we choose to include in the reference class are determined through normative ideas about what proper functioning is, so it would be circular to use the standard class to make determinations about what qualifies a system as properly functioning. The Bio-Statistical Theory only moves the value judgment problem up a level: instead of making a value judgment about what functioning is normal, we make a value judgment in selecting which organisms are normal and should constitute our reference class.
Besides the problem of circularity, general naturalists face another problem: an organ can be functioning in its proper way according to evolutionary biology, but still be considered “diseased.” Kingma gives the example of an overdose of paracetamol, an over the counter pain reliever that causes liver damage. A properly functioning liver will reduce in function when flooded with the drug. In this case, the liver certainly is not healthy, but it is functioning appropriately, given the unfortunate situation it is in. Even if an organ is functioning properly, external conditions that Kingma calls “stressors” can cause an organ to become diseased. If someone came into a clinic with an overdose of paracetamol and the physician extended the naturalist theory of disease to a normative theory, she would find that the liver was not diseased and that it would be impermissible to treat the patient. The problem of circularity and the practical problem of a somewhat limited idea of diseased both seem to be major weaknesses that stand in the way of using naturalism as a normative guide in clinical practice.
The second conceptual analysis of disease I will consider is constructivism, which makes no attempt to shy away from a value-based, normative conception of disease. Constructuralists see disease categories as formulated based on social constructions about which physical conditions are healthy and which are not. They claim that we cannot understand disease independent of social concepts like “culture, history, meaning, and the constructed nature of medical phenomena.” Because this definition of disease is so rooted in social constructions, constructivists accept (and expect) that the conditions that are diseases will vary across cultures. Some constructivists, like Lawrie Reznek, explicitly reject the idea that a malfunction is necessary for a condition to be a disease.
To support their theory, constructivists often cite conditions that used to be considered diseases but are no longer. A common example is that of homosexuality. Reznek explores the way that conditions can move between the categories of disease and healthy across time and space and uses that as evidence that these are not mere category mistakes, but that the categories themselves are variable. Naturalists respond to this claim by maintaining that they really are category mistakes, and that the removal of homosexuality from the “disease” category was an example of psychologists realizing that they had mislabeled a condition in which all systems are properly functioning a disease, not that the category “disease” had changed to exclude homosexuality.
Constructivists claim that while a disease can be traced back to a real biological process, the determination of whether a specific biological process is a disease relies on social considerations. This determination is based on a shared idea of what constitutes a “normal” and “valued” state. The problem with this approach is that there is variation about what these states are even in a specific community. This begs the question, “What counts as a community?” which naturalists disagree on. It seems excusable that the variation of “normal” across cultures might bleed into a sense of variation of “normal” within a culture, but the theory is meaningless without an idea of “normal” specific to a culture.
There are also structural problems with the constructivist position. Constructivists are most likely correct that some diseases, particular psychological disorders, are based on social ideas about what conditions are valuable, but are they right that the entire category of disease is socially constructed without any naturalistic basis? It seems possible that there are some conditions that are classified as disease merely due to social factors, but that there are others that are true biological malfunctions. This means that constructivists cannot make their case by pointing out individual conditions that have moved into or out of the “disease” category; they need to prove that the entire category is based on social norms and that there are no diseases that can be categorized as such by only empirical evidence without social judgment. The constructivists do not seem concerned with making that sort of argument, though. Constructivist Peter Conrad writes that he is “not interested in adjudicating whether any particular problem is really a medical problem… I am interested in the social underpinnings of this expansion of medical jurisdiction.”
This structural problem of constructivism may be accounted for by the fact that most constructivists are more concerned with social issues than with philosophical definitions, so their arguments sometimes read more as descriptions of the medical method, rather than “necessary and sufficient condition” based arguments. This problem may dissolve if we read constructivism in the tradition of social critique rather than philosophy, but if we are to consider using the theory as a normative – and necessarily philosophical – guide that can help us determine which conditions permit intervention, we must read it as a philosophical theory, and its structural problems become unavoidable.
The second structural problem of constructivism is that society already makes a distinction between those who we think are diseased and those that we disapprove of for other reasons. We do not pathologize every norm-breaking condition (general laziness, ugliness, poor taste in house decor, for example) and when people do things we ethically disapprove of, we often question their morals, rather than their sanity. So if constructivists want to argue that those we classify as having diseases are merely breaking social norms, they need to account for why we classify them differently from other norm-breakers who we don’t classify as diseased. They must explain why those who are diseased are norm-breakers in a health-related way without appealing to biological notions of “health.” This is a difficult explanation to provide, and there is no standard constructivist answer.
The third and final analysis of disease I will consider is that of embedded instrumentalism. Kenneth Richman, who developed embedded instrumentalism, borrowed some elements from constructivism but worried that any theory of disease that is based on culturally-contingent factors could not be universal. He proposed a theory in which health is indexed to goals, such that how healthy an agent is determined by how well they can fulfill their goals. He wanted to propose “a theory of health which characterizes certain states as being valuable neither intrinsically nor merely because they are useful, but rather because of their being in an appropriate relationship to an individual’s actual values.” Richman rejects the view that certain goals are intrinsically valuable. He argues that if we begin with fairly agreeable goals like “The proper functioning of a heart is an intrinsically valuable goal”, we will eventually get to more troubling organs and will have to make claims like “The proper functioning of a set of ovaries is an intrinsically valuable goal.” Of course, about 41.5% of reproductive-age people with ovaries in the United States use some form of hormonal birth control, with the specific goal of ensuring their ovaries are not functioning. Richman thinks that it is impossible to form a coherent argument that a heart functioning is intrinsically good but a set of ovaries functioning is not.
One possible objection to this argument is that someone with very low ambitions might be considered healthy merely by virtue of their laziness. Richman tries to account for this problem by introducing the Richman-Budson view of health. According to this view, a person’s health is not indexed to their actual goals, but to the set of goals they would choose for themselves if they were fully aware of their “objectified subjective interests,” by which he means the goals they would set for themselves if they were perfectly rational and had full knowledge of themselves and their environments.
There is a counterexample to the Richman-Budson view, however. What if the goals we have are unreasonable? If I have the goal of playing 48 simultaneous chess games while blindfolded, but I can’t achieve that goal due to my poor visual memory, lack of practice, etc., am I ill? It seems like obviously, I am not, but that goal is compatible with a full (though generous) understanding of myself and my environment.
Is a concept of disease helpful in deciding whether to intervene?
Beyond the specific problems that each individual theory of disease faces, the structure itself of the healthy/disease distinction may not be a helpful guide for clinicians trying to decide whether or not it is permissible to intervene when faced with a specific condition. I will look at four potential issues with using the health/disease distinction to determine whether to intervene in a specific condition.
First is the threat of circularity. Some philosophers of medicine explicitly use the normative distinction of whether or not a condition allows intervention to ground their healthy/disease distinction, which would make it circular for us to use the health/disease distinction as an ethical guide to determine whether intervention is permissible, and most implicitly use it. One example of the explicit use is John Harris’ “ER test,” in which he argues that a condition is a disease if the condition makes someone worse off and if we would think medical personnel would be negligent if they did not treat this person if they came into an ER. If we were to try to use such a distinction to determine whether or not to treat someone, we would be stuck in a circular argument.
Germund Hesslow makes a related argument that the concept of disease is not normatively useful in clinical practice because it “does not coincide with any clinically important or morally relevant categories.” Regardless of what theory of disease we choose, there are examples of conditions that are not diseased that permit intervention and diseases that do not permit interventions. Hesslow considers three types of conditions where this nonequivalence surfaces. First, doctors regularly treat patients in healthy states. He cites the examples of plastic surgery, gender affirmation surgery, and vaccination. Surely, we do not think that a too-big nose, gender, or a natural susceptibility to infection make a person diseased. Second, there are conditions that are technically pathological which physicians rarely treat, including benign tumors like birthmarks. Third, physicians sometimes intentionally induce pathological symptoms. Hasslow gives the example of sterilization, but we can also consider Richman’s argument about birth control. According to Hasslow, if disease was a clinically useful category, then physicians would never intentionally induce disease-symptoms.
A third argument against using the healthy/disease distinction to guide clinical practice is that the version of the distinctions discussed so far includes too much information in some ways and too little information in others. A theory of disease gets caught up in all the issues of a conceptual analysis. For instance, every theory requires a value-laden discussion of “norms” and “normality.” (Recall that naturalism claims that norms are biologically determined, constructivism claims that they are socially determined, and embedded instrumentalism that they are indexed to personal goals.) If we are only concerned with deciding whether or not it is permissible to intervene, it would be ideal to develop a theory that we can use as a clinical guide without having to develop an entire theory of disease.
In other ways, the theory has too little information to provide practical clinical guidance. If we only consider “disease,” we have no way of determining whether to intervene in cases of disability or injury. But there is no obviously philosophical, ethical, or even ontological distinction between disease and injury or disability. It seems likely that the ethical norms that govern disease should also govern disability and injury, and conceptual analyses of disease fail to provide guidance in these cases.
Ereshefsky makes a fourth argument again the entire project of a conceptual analysis of disease. He claims that there is a structural problem with the health/disease distinction. The distinction must take into account at least two factors: the physical state of the individual and the social value or disvalue of that state. On one extreme is naturalism, which values only the former, and on the other is staunch constructivism in the vein of Conrad, which values only the latter. There are some approaches that try to balance the two, like instrumentalism. But like any philosophical problem of distinction, however we try to balance the two factors, there will always be counterexamples. In this way, Ereshefsky thinks that the project is doomed to fail. The distinction between health and disease does not map onto a permissible/impermissible intervention distinction. At best, it distinguishes between conditions that permit intervention (diseases) and conditions that require more consideration (health). If we say that all healthy conditions do not allow for intervention, we make preventative medicine impermissible. It would be much neater if we had a single theory that could give us normative guidance on whether or not it is permissible to intervene.
A New Theory: “Do you want help?”
I propose a new approach that is still normatively useful in that it helps decide between when intervention is permissible and when it is not, but it does not run into the same difficulties as a conceptual analysis of disease. On my account, the distinction between whether or not intervention is permissible comes down to the question of whether an agent wants help. If they do want help, one is permitted to intervene. If not, one is not permitted. This approach is most closely related to that of embedded instrumentalism but tries to eliminate the aspects of it that are not relevant to the normative distinction between intervening and not intervening. For now, I will take a relatively general view of what qualifies as “wanting help.” I imagine the theory would be used in clinical practice in which a particular symptom is brought to a clinician's attention and they have to determine whether or not it is permissible to intervene. Whether or not help is wanted would be determined by the agent, and “help” would be whatever the intervention the physician is considering. Typically, we think that the phrase “I need help” as remedying some status that the agent considers troubling, but what qualifies it as troubling is up to the agent.
This approach solves some intrinsic problems of using a theory of disease as a moral guide. Although it may seem that this approach is just as circular as using a conceptual analysis of disease, it is not. To see this, we can consider the difference between asking whether someone wants help and whether one ought to help them. The first is a practical question, and therefore can be used to answer an ethical question – “Will I intervene?” – without the threat of circularity. The second is an ethical question and results in circularity when we try to use it in this case. With this new distinction, we are not substituting one distinction in for another; we are using the question of whether someone wants help as a guide to help us understand when we are permitted to intervene.
Additionally, the question of whether someone needs help has exactly as much information as we need to determine whether or not to intervene. It is not bogged down by the complications of a conceptual analysis, but it covers disability and injury. Because the theory is not supposed to be used as a definition, only as a guide for action, there is no need to hold onto any “intrinsic idea of health” and we can limit the scope of our consideration to the agent’s desires. The theory is also immune to Hesslow's criticism that theories of disease are irrelevant to clinical practice. This approach is built with use in mind such that part of the theory itself is a normative guide for clinicians that clearly determines whether or not they are permitted to intervene.
Although the theory draws significantly on instrumentalism, it doesn’t face the same problems. The primary counterarguments to instrumentalism are that it fails to provide a coherent conceptual analysis, which simply is not a problem for a theory that is explicitly not a conceptual analysis – the theory doesn’t have the same definitional burdens. Unlike instrumentalism, this theory doesn’t have to provide necessary and sufficient conditions to classify a condition as a disease.
This new theory also aligns better with our intuitions about intervention than the normative extensions of the conceptual analyses of disease. As discussed in the introduction, it is in our interests to develop an intuitive theory both because intuition is valid evidence for ethical reasoning and because a theory that is unintuitive is much less likely to be followed and therefore considered useful. We can use case studies to test our intuitive distinction between who wants help and who does not. We can compare how closely the “help” distinction and the normative extension of the theories of diseases align with our intuitions.
Case 1: A person who knows they are pre-diabetic
Intuition: Intervention (education, for example) is permissible.
Case 2: A person seeking an abortion for themselves
Intuition: If we put aside the abortion debate, intervention is permissible.
Case 3: A person with delusion and hallucinations who is isolated from society (i.e. not a danger to anyone; harm to him does not impact others) and does not want help
Intuition (crowd-sourced for three college students): Intervention is impermissible.
A theory that relies on an evolutionary biology definition of “function” would respond that intervention is impermissible in both Case 1 and Case 2 because no system is (yet) malfunctioning. They would likely answer that intervention is permissible in Case 3 because some element of the delusional person’s psychological or physical systems is malfunctioning. These responses are the exact inverse of our intuitive responses.
A constructivist based in a community similar to the one at Brown would respond that intervention is permissible in Cases 1 and 3 and not in Case 2. In Case 1, we value the condition of being pre-diabetic as undesirable. In Case 2, while we do not necessarily value the state of someone who has an unwanted pregnancy, we certainly do not pathologize the state as a disease. In Case 3, we generally see hallucinations and delusions as unacceptable.
An instrumentalist would most closely align with our intuitions. They would likely respond that intervention is permissible in Case 1, assuming the person has some goals that would be more attainable if he were not diabetic. They would certainly respond that intervention is acceptable in Case 2 because we can conclude from the fact that the person is seeking an abortion that they have goals that would better be accomplished if they were not pregnant. The answer to Case 3 would depend on whether the instrumentalist subscribed to the Richman-Budson theory. If they accepted it, they would say that intervention is permissible because if the person had perfect knowledge of themselves, they would most likely have goals that would be better attained if their delusions and hallucinations stopped. If the instrumentalist accepted a more basic idea of instrumentalism where health is indexed to an individual’s actual desires, then they would claim that intervention is impermissible because the person does not have any occurrent goals that are better achieved by the cessation of their delusions.
Independent of its comparison to the theories of disease, there are other reasons to adopt the “wants help” approach to intervention. By focusing on whether or not someone wants help, we are zeroing in on the normatively useful part of the much wider question of whether or not someone is in a diseased state. That is to say, when we ask whether or not someone has a disease in the context of deciding whether or not it is ethical to intervene, what we are really asking is whether or not they need help. Additionally, the theory is more humane and less pathologizing and paternalistic. It focuses on the individual and their self-determination, rather than a particular diagnosis, and it assumes that most people can properly practice their right to bodily autonomy most of the time.
Shortcomings and areas of further investigation
In this paper, I have laid out a new way of determining whether or not it is permissible to intervene in certain conditions, and there, of course, are major shortcomings of this theory. Some of them can be patched up, but most will require substantial consideration and reworking of the theory.
The first potential problem is that if we keep the vague definition of “wants help” that makes paternalistic, value-laden ideas of “normal” and “healthy” unnecessary, we have to accept that some degree of “enhancement” (genetic, pharmaceutical, etc.) is morally permissible. If the agent finds their current situation troubling and wants an intervention that would help them, assuming that they understand the side effects, this theory would permit the intervention. This may be an acceptable conclusion, though, because the “wants help” question would be asked in a clinical setting and would not overrule any external rules or laws. So for example, a “neurotypical” person could not get a cognitive enhancer like Adderall for their SAT because it is against the rules of the College Board, but they could maybe get a prescription to keep themselves focused during a grueling day-long interview at a tech company.
Another more serious problem is that our intuition about who needs help can sometimes differ from who actually wants help. Admittedly, there are significant benefits of posing the question as whether someone wants help, rather than whether someone needs help. It solves the problem of having to determine what it means for someone to need help, and it centers the agent’s autonomy and self-determination. However, someone who we may intuitively think “needs help” may not “want help.” The theory is threatened when we question someone’s ability to decide whether or not they need help. There are four types of cases in which we might think the agent lacks the ability to make these decisions:
Someone who had the ability and lost it (e.g. someone with dementia)
Someone who never had the ability (e.g. someone with a rare genetic disorder)
Someone who may have the ability in the future but lacks it now (e.g. very young children)
Someone who may be a reliable decision-maker but cannot communicate it (e.g. someone in a coma)
When faced with these situations, we have two possible options. We could try to determine whether the person (or some proxy for them) wants help for themselves, or we could appeal to an idea of who “needs” help.
In the first case, we have a reference of who the person was before they lost this ability, and they may even have a written account of what they want. Even though this is unlikely to answer the specific question of whether they want help in that moment, it may serve as a guide. The problem with trying to use what someone expressed in a previous state is that desires and values can change. Someone who we may not think can properly exercise their right to bodily autonomy due to illness may still be able to express feelings about whether or not they want help. The occurrent views may differ from those that they expressed in the past. In these situations, it is not necessarily clear which account to use.
In the second, third, and fourth cases it seems reasonable to use a surrogate, ideally someone who has the agent’s best interests at heart and who we have reason to believe would make similar decisions to the agent if the agent had the ability (i.e. people in their normative community, family members, etc.). We could then base our action on whether the surrogate wants help for the agent. The benefit of this solution is that it resists a didactic idea of who “needs” help and places the responsibility as close to the agent as possible. On the other hand, there is no way of knowing who really has someone’s best interests at heart, and it opens up too much room for variation between what a surrogate wants and what the agent would have wanted in a counterfactual in which they could express whether or not they want help.
Using a surrogate in the third case of the young child introduces new problems. The agent will actually regain the ability to express whether or not they want help, so having someone else make that determination for them is riskier because both the surrogate and the clinician are more accountable to the agent than in the first or second cases. On top of the accountability, it is difficult to determine whether an agent can exercise their bodily rights. With children especially, there is disagreement about what rights children at various developmental stages can exercise, and there is contentious literature to match.,, How much bodily autonomy children, and particularly adolescents have, varies greatly across cultures and even across philosophical theories within cultures.
Using a surrogate in the fourth case of the person in a coma introduces even more problems. In this case, a clinician would be overruling someone’s occurrent wants, even if they were to make the decision to intervene or not intervene that corresponded to the person’s wanting or not wanting help. Despite the fact that we have no access to them, there is something intuitively troubling about this.
This new approach of asking whether or not an agent wants help and making a decision based on that information has advantages over appealing to a conceptual analysis of disease. The question of wanting help cuts straight to the normative question without being caught up in categorical issues and it aligns better with our intuitions. However, the theory has some structural problems, and it cannot account for any situation in which it is not clear what someone wants or in which we have reservations about what they want. Not only that, but fitting the theory into clinical practice would be difficult, if not impossible. Before we can consider what the theory would look like in practice, we must develop a coherent response to the situations in which what the person wants differs from what we think the person ought to have.
 Preamble to the Constitution of WHO as adopted by the International Health Conference, New York, 19 June - 22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of WHO, no. 2, p. 100) and entered into force on 7 April 1948.
 I mean “normative” in the sense of prescribing a specific state as “normal,” as opposed to “normative” in the sense of prescribing a specific course of action.
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