Exploring health and disease concepts in healthcare practice: an empirical philosophy of medicine study | BMC Medical Ethics

Defining health and disease

In the interviews, respondents have pointed to various important practical functions of health and disease concepts. In some interviews the influence of certain definitions/approaches was explicitly articulated by participants. Participants talked about practical problems that they experienced and were often able to link these with how health and disease are conceptualized in their fields. For instance, some participants described specific models or definitions, such as the biopsychosocial model [32,33,34] and Positive Health [35, 36] and talked about their significance for their professional fields. In other interviews, however, the link between conceptualizations of health and disease and practical issues was more implicit. Participants would, for example, speak more broadly about ‘biomedical’ and ‘holistic’ approaches, or discussed how thinking in terms of ‘evidence based medicine’ (EBM) could (negatively) affect clinical practice.

While some of the respondents mentioned that it would be convenient to have general, all-encompassing definitions, none of them thought it would be possible to formulate them in a way that they are exhaustive and practically useful at the same time. Instead, in some interviews, viewing health and disease as plural concepts was discussed as being a possible alternative. HD01, says in this regard:

I’m not saying that one type of concept is primary or more legitimate than the other. But if you are talking about a health concept for the use in scientific research, then I would argue for a concept that is more clearly defined. If you’re talking about how people experience things or use, for example laymen, you could be talking about a simpler concept. And I think those things can coexist just fine.

At the same time, other participants were more hesitant when discussing the possibility of having multiple definitions of health and disease. Concerns were raised that such a situation may lead to problems of communication between institutions, (medical) disciplines, but possibly also between doctor and patient. As defining health and disease was viewed by many to be important to facilitate communication, for some participants it also seemed to be problematic to have a plurality of definitions. Furthermore, some participants would also critically question the endeavor of defining health and disease, questioning the goal of defining concepts itself. In several interviews, defining health and disease is described as a continuous process of reflection and adjustment, rather than a pursuit of finding ultimate answers. One participant, HD02, describes that how we define our concepts always have an effect on practice:

I think that every description is functional, in the sense that it always has an effect. Words aren’t neutral so it’s not- I don’t believe in that correspondence theory of there being something in reality that you just have to put the right term on. A word always does something. And I think that’s what it’s more about, so when use a certain view of health, for example, the absence of diagnosis. Then it is important to see, what effect does that have? Who or what is excluded? Or who benefits from this? Who gets worse from this?

Health and disease concepts in practice

One of the key aims of this study was to explore how health and disease are conceptualized, defined or approached, in actual practice. In particular, we were interested what kind of practical functions health and disease concepts have in various contexts. In our analysis of the interviews, we observed that respondents discuss different types of health and disease concepts, working on different levels and as used for various kinds of purposes. If we look at the different type of functions and contexts the concepts are deployed in, and the levels on which they ‘operate’, an interesting picture emerges. We have categorized them broadly into three types of practical functions: (1) a ‘strategic, political and policy-making function’, (2) an ‘institutional and social function’, and (3), ‘guiding clinical practice and medical research’.

Strategic, political and policy-making function

In the context of strategic development, political debates and higher-order policy-making, definitions of health and disease can stay relatively broad and vague. Their function is not, for example, to give clinicians clear thresholds for line-drawing between the normal and pathological. Rather, their function is to steer public health policy, to change current practice within a healthcare organization, or to facilitate cooperation between organizations and institutions. Within this context, health and disease concepts do not need to have the analytical or explanatory power as may be needed in, for example, medical research or clinical practice. The definitions at stake may be demanding and idealistic, as they are used for questioning and/or changing the current state of affairs. Participant HD09 says in this regard:

If you want to explain to a politician why we are going to deploy all kinds of healthcare resources that are not directly focused physically, somatically, then you have to be able to explain it in clearly defined goals, objectives, and health definitions. And in that sense, it is of course also very important for the WHO to adjust such a definition. Because that changes your entire health policy worldwide. For example, it has an effect on what you use for prevention, but it also has an effect on what you use for treatment.

Embedded in these (inter)national discussions on definitions, goals and policies, we may find related discussions in the context of policy on local or organizational levels. Participant HD03 explains why defining health and disease concepts are considered to be important for organizational strategy and policy-making within healthcare organizations:

In the academic hospitals, we are primarily using a biomedical approach towards disease. At the same time, we have the ambition to expand to preventive medicine and to strive for positive health, public health, global health, that are all approaches of health. However, as an academic hospital you are only specialized in thinking about disease in biomedical terms.’’ … “So that’s the problem. If you make a strategy, what are you going to focus on? And so, what I say is, the wish is to focus on prevention, public health, global health and to look more broadly at health and disease.

Although broad and vague definitions may be used successfully for the purpose of guiding or changing policy, more concrete definitions may be needed in other contexts and for other purposes.

Institutional and social function

Another practical function that participants ascribed to the disease concept, and more concretely, to medical diagnosis, is a ‘gatekeeper function’ for issues regarding assessing eligibility for reimbursement of treatment and other healthcare arrangements. Examples mentioned by participants include debates on the legitimacy of viewing clinical conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and chronic pain disorders as ‘genuine diseases’. What we consider to be diseases may therefore also be viewed to be a social and political agreement, some argue. Participant HD05 explains why ‘disease’ could be viewed as an institutional concept:

Who will be reimbursed for their medical treatment? That is decided on a political level.’’ … ‘‘And you can say that, at some point you have to say that someone has a disease, within the framework of a certain law, because that is how it has been agreed upon. And that is an institutional fact, because that is what has been agreed upon by various authorities.

What our institutions acknowledge as ‘genuine diseases’ does not only have impact within the medical realm, but also plays an important role in societal and personal debates. What we define as disease has also a social function. It creates a situation in which others take care of you as a patient, but it can also excuse responsibility from social tasks and duties, for example. In this regard, HD09 says the following:

And no matter how you look at it, sickness creates privileges. Because if you’re sick, people will bring you breakfast in bed, or not if you’re vomiting. And then you get get-well cards, people send flowers and you get time off. Then you are very pathetic and that comes with all kinds of perks. And I’m not saying that people get sick on purpose because of the perks, but that is an automatic consequence. Because my demented patients don’t get get-well cards and flowers and breakfast in bed at all, they are looked at strangely in the supermarket. And patients with psychiatric disorders, well, let’s say… they are usually not the most popular. And that has to do with the fact that we, I think, as a society have determined that being sick has to do with physical ailments…. There’s a discrepancy there. Physically ill: pathetic, perks. Not visibly ill: poser, difficult, hassle, hassle, hassle. That stings.

Guiding clinical practice and medical research

In a clinical context, health and disease can be approached in different ways depending on the type and level of care that is provided. For example, in emergency situations a medical doctor needs to focus on the direct biological problem, but when the patient is in a recovery phase they may have to ‘switch’ and take psychological and social aspects more into account. When caring for a patient suffering from a chronic condition a medical doctor may want to focus on aspects such as resilience and adaptation, and supporting the patient in what they consider to be meaningful. By going through these levels of care, health and disease may be approached differently. Here, HD06 explains this process of ‘shifting’ between models:

Of course, healthcare is very broad. The trauma surgeon and the emergency room doctor who provide acute care for a trauma patient, they are mainly focused on the biomedical model, their A, B, C, D, E, breathing, blood pressure, circulation, you name it. But then you end up in a rehabilitation process in which the biopsychosocial model is used. And then you come to an occupational doctor and an insurance doctor where I think it is very important to also use that model of Positive Health. Because there- Well, we see that with trauma patients too. In our research, independent of the seriousness of the injury, impediments to the ability to function were actually caused by all sorts of personal factors. So, you have to support people in finding their own direction and adaptability.

While taking account for ‘personal’ factors such as adaptability (or resilience) and societal participation may be of relevance for the treatment and revalidation of patients, and thus could be considered as being part of ‘health’, in context of medical research such factors are usually separated from health and disease outcomes and viewed as determinants instead. This allows researchers to measure causal relations between factors such as societal participation and health in a better way. Taking all kinds of (intra)personal and societal factors as being part of the health concept may result in problems for causal explanations in scientific research. Participant HD01 says the following regarding this tension:

The moment you use a broad concept of health, in which all these things are lumped together, you risk that the causality is not actually clear. So, in that sense, I’d like to stick to defining health as biomedical and mental functioning. And I would like to keep those other factors in their own place. And then you can look much better at, what causes what? Or how are things connected?

Problematic situations in practice

A second key aim of this study was to ask participants if they did experience problematic situations in practice that are caused by or related to conceptual issues. In the interviews, a large variety of problematic situations were discussed, including various clinical, epistemological, and ethical issues. Some participants described more abstract problems such as ‘medicalization’ or ‘healthism’ in a broad sense, while others described more concrete issues, such as social or bureaucratic problems in case of patients with medically unexplained symptoms (MUS). Because of the diversity of participants included in our study (i.e., people working in different fields and organizations), the answers to our questions were also diverse and related to their particular context. We have clustered the problematic situations which were brought up in the interviews into 5 types:

1) Illness without identifiable pathology

2) Biomedical versus holistic approaches

3) Line-drawing and threshold problems

4) Problems with translational medicine: from research to the clinic

5) Communication problems

Illness without identifiable pathology

One issue that was discussed in several interviews is the problem of patients suffering from illness without identifiable pathology (or, ‘disease’). This includes patients suffering from ME/CFS, functional neurological disorders, chronic pain disorders, and other conditions that are often described under the umbrella term ‘medically unexplained symptoms’ (MUS). As illness is often viewed to be secondary to disease, and as it is commonplace to think that in order to overcome the illness, one has to cure the underlying disease, it seems only logical to search for the causing pathology. However, in many cases this search does not lead to a clearcut answer. As a result of this, unfortunately, the suffering of the patient is sometimes not taken seriously by medical professionals.

Besides being taken serious by medical professionals and getting the care they need, patients suffering from illness without known pathology may also encounter other type of problems. For example, for patients who cannot work due to illness a medical diagnosis is a necessary criterium to be met for being excused from work and to gain access to certain social and financial resources^{Footnote 2}. HD07 explains the institutional aspect of medical diagnosis:

Well, in this sense, we are dealing with legal frameworks. The law prescribes that to be able to claim a sickness benefit, one must be diagnosed with a disease. If it stops there, then we do not need to test those other two criteria. And sometimes you will find yourself in a gray area. Because yes, for example, I am also thinking about an example that I have. Social problems can also often lead to dysfunction. In the case of a social problem, there is not by definition disease, but can become one. And we often have to deal with those kinds of dilemmas, that if you see someone with informal care, with a financial problem, just to name a few- Those people who are walking on eggshells at a given moment when they come to us. We establish that, legally, there is no disease. But it might turn into disease.

In line with the situation sketched by HD07, HD15 argues that this problem of not getting recognized by our institutions as having a genuine disease, is a terrible experience for patients. HD15 explains that this in matter of fact urges their organization, a patient organization, to ‘medicalize’ the condition:

Then it will get very bad for them. Because people have a disease on the one hand, on the other hand, they always have to prove that they have it, and then there is also a financial need. So, that’s really the crux of the story. And, of course, we try with our work to make it clear as much as possible, that it is a progressive, biological condition, biomedical condition and that just needs research.

On the other hand, negative aspects of medicalization were also mentioned throughout the interviews. Participant HD14 mentions that including a condition in the ICD should be done with precaution:

The bottom line is that I’m a huge proponent of including pain in the ICD-11, the way as it is now. But I also see that there, I also see that in that balance of those arguments, there are, well, let’s just call it dangers. And that is that you do indeed have things that are normal part of life, which we are going to call disease. And that medical procedures are set up by people, who say, ‘hey, come to me, because I can solve it’. And that is, we have to be very careful about that, in communication, on the one hand to recognize that pain that is there, et cetera, and to take it seriously and with all the benefits that entails. But at the same time to ensure that we do not make it too medical where it is not desired.

In the interviews, many participants argue that, in clinical practice, the illness-experience of the patient is most important and deserves recognition. HD08 argues:

I think a disease is largely about the experience of the patient. And again, of course there is a biological construct underneath, but not always, eh. There are also people with a disease without a biological construct. And just to say, those people are not sick, I think that is far too short-sighted.’’ …. ‘‘We relatively often see people with a functional disorder, something that used to be called conversion or functional neurological symptoms. Those people can suffer a lot from this, but there is no biologically identifiable cause. And I think you shouldn’t dismiss those people as posers or say, you have nothing. No, they do have something and they do suffer from it and that leads to hindrance in daily life. So, I think you can speak of disease.

Biomedical versus holistic approaches

A broader issue that came up in many of the interviews is one that may be best described as problems that are due to biomedical versus holistic approaches towards health and disease. Participants discussed that focusing treatment primarily on a biomedical parameter while paying less attention to the experience of the patient as a whole can be problematic for providing good clinical care. That is, patients may be treated for their medical condition without taking sufficient account of their personal circumstances and/or life goals. Participant HD11 said in this regard:

Of course, you can approach disease in many different ways. If you approach it cell-chemically, so to speak, disease is what damages, or attacks, or if you will, the biochemical integrity of your cell. But if you look from a patient’s perspective, or from a doctor’s perspective, then a disease is something that hurts, bothers, hinders that patient. And the perspective of the patient, but also the approach of society, of course, plays a very important role in this.

In some cases, the emphasis on the biomedical paradigm may even lead to instances of ‘treating’ biomarkers that may not have a clear clinical significance. HD11, discussing the implications of the new drug (aducanumab) for Alzheimer’s Disease, explains that:

The bottom line is, there is a new drug that, if you look at the cellular level, biochemical level, it absolutely does something. It does something to the proteins in your brain, period. However, if you look at the clinical effect on the patient, and what it can do for the patient, it does nothing. Patients don’t improve, we have no improvement, cognition does not improve, general daily activities neither, nothing. The FDA has approved it on the grounds that, despite the fact that it doesn’t do anything clinically, biochemically the evidence is so clear that it does something, it’s bound to do something clinically. While it just doesn’t.

Yet, also in cases where a biomedical treatment has proven to be clinically effective, it could be nevertheless problematic to forget about the patient’s personal circumstances. Sometimes it may be more important to help people with psychosocial issues, for example, than to direct attention to the medical problem. Participant HD10 discusses person-centered care for diabetes patients and argues that taking care of the patient – improving their health – includes more than treating the disease biomedically:

That also touches on the need for person-centered care, – that the care providers really can actually see from the patient’s eyes which approach they should take. Do they really have to focus on that disorder or do they indeed have to focus on the social realm?

Another related problem that was mentioned in the interviews is that of prioritizing biomedical diagnosis over other holistic aspects when assessing the prognosis. Although the diagnosis may give important information regarding the development of a disease and about chances for successful treatment, other non-medical factors may have an underestimated influence on the prognosis as well. In some instances, psychosocial aspects may even show a stronger correlation with prognosis and treatment than the medical diagnosis does, participant HD04 says in this regard:

The classic assumption is very much like, if you know a diagnosis, then you know the prognosis and then you know whether or not you need to do something to influence that prognosis. Whether or not you can do something to influence that prognosis. And what we are gradually noticing is that that prognosis may well be determined by many other factors and that the diagnosis is only a small part of it and therefore only partly determines what the prognosis is. The prognosis is also determined by all kinds of other factors. other variables, to put it in scientific terms.

According to HD04, it is common for medical professionals to focus too much on biomedical diagnosis and to underestimate the influence of ‘non-medical’ variables on the prognosis and the well-being of patients – which, she beliefs, should be the ultimate aim. This does not only go for patients with medical unexplained symptoms, for which finding the right diagnosis is considered to be very difficult. Also for diseases that can be diagnosed straightforwardly there seems to exist a disparity between a biomedical view of disease and more holistic ones. HD04 gives the following example:

Examples abound. People with rheumatoid arthritis, we can diagnose rheumatoid arthritis fairly well with lab tests, with clinical tests, with imaging tests. We have criteria, you can always argue about that, but we generally agree on that. And then we also have a measure of the disease activity. So, if you have a very high sedimentation rate, then you have a high disease activity, for example. And if you then look at the severity of the complaints and the disability that people have and relate that to disease activity, then that is not a nice linear relationship. So, then there are people with, if you would look at it as a rheumatologist, as a doctor, if you look at it as a doctor, then well, that disease is just well under control, hardly swollen joints, no increased sedimentation rate, goes well, but in fact people suffer very much.

Line-drawing and treatment threshold problems

In the interviews, problems with drawing the lines between states of health, disease, or ‘being at-risk’, and problems with determining the right thresholds for starting medical interventions, were considered important reasons for having clear definitions. Having clear cut-offs for diagnosing disease and for starting treatment is seen as convenient for clinical practice. Participants expressed a desire to have objective measures to decide whether we are talking about disease, and when to start treatment. Yet, they were also highly doubtful if such clear lines could be drawn. On the one hand, they said diagnostic tests are used to examine if a patient deviates from the (objective, biomedical) norm. On the other hand, participants also argued that patients’ symptoms should be viewed as central to drawing the line. This also seems to be problematic, however, as patients may sometimes deviate from the norm but do not experience symptoms, or vice versa, patients may experience symptoms but test results do not show significant abnormalities. HD08 talks about the challenges of the line-drawing problem for clinical-decision making:

Of course, it is difficult, because doctors like to work neatly, like to work according to scientific evidence, like to work according to guidelines. And a guideline only works well if you can make hard statements, otherwise you have a guideline that says about everything: you ‘may consider this’. And yes, that is how guidelines end relatively often, but then it is not very useful in practice, because you want such a guideline to guide you. And the surgeon, just to name one, who wants to determine whether he should operate. And it’s easy if that just has a cut-off point that says, you have to operate above 23 and not below, just to name something. So, whenever there’s a big gray area, it’s complicated and leads to subjectivity and also different doctors making different decisions.

This was also discussed in relation to prevention, when patients are ‘treated’ with medication to prevent future disease(s) while they do not experience symptoms at that point of time. In particular, participants pointed to the lowering of diagnostic and treatment standards for risk-factors such as high blood pressure and high cholesterol as examples in which it is difficult to draw the line. Participant HD09, who reflect on this problem, says the following:

But you can get quit some muscle cramps from cholesterol lowering drugs. Yes, so it may be that he has one in twenty, one in thirty less chance of that stroke, but in the meantime, he is no longer able to walk down the stairs and do his own shopping because of those muscle complaints and perhaps even take a fall. Well, and it’s not the case that everyone has muscle problems, so for the people who don’t get this it might be the best treatment. That is the way you have to look at it. And also evaluate, eh, and that’s about when you start something, you have to follow up what it does to someone, even if someone has been using it for some time, because that can change.

When participants were asked if they could identify reasons for this trend of lowering diagnostic and treatment thresholds, some suggest that cultural values and norms play an important role. Not only there is an increasing societal pressure on living a healthy life, health is also increasingly viewed as a moral good. It is this normative shift, in combination with ever growing technological possibilities, that is suggested to lead medicine to focusing on early detection and treatment of health risks more and more – even if chances of developing actual diseases are expected to be low. Patients may desire more diagnostic testing or more frequent health check-ups and medical professionals may feel obliged to grant their requests, since the technology is available. This is not without consequences, however. HD11, for example, explains that excessive diagnostic testing may lead to overdiagnosis. In particular, ‘incidental findings’^{Footnote 3} are considered to be a problematic situation:

And that is, I think, also an ethical dilemma that doctors have, because then you find something and what do I do now? They have no complaints at the moment, so I don’t really have to do something with it now. But imagine that it is cancer, and in four months they will come in with metastatic disease, and then I could have prevented that. That’s difficult. And then the technology renders it unlikely that such a patient says, never mind, we’ll see how things will go. Because everyone says oh, yes, if something can be done about it, then let’s do that scan, then do that biopsy, then do that incredibly complicated procedure.

Incidental findings may be clear instances of pathology, and in these cases, it may be regarded as fortunate that the patient can be treated for a disease that may otherwise have gone undetected until it was too late. However, in other cases incidental findings may be benign deviations or anomalies and it is questionable if the patient will benefit from further diagnostic testing and/or medical intervening, as it is not clear if the anomaly will ever lead to clinical symptoms. Again, this begs the question where to draw the line between normal and abnormal, between health and disease.

Problems with translational medicine: from research to the clinic, and beyond

In the interviews, some participants also discussed problems regarding translating medical scientific findings from a research context into clinical practice. One approach that was mentioned by participants as particularly problematic was ‘evidence-based medicine’ (EMB)^{Footnote 4}. While medical professionals may be aware of the different aims and goals of medical research versus clinical medicine, and of the problems surrounding EBM, they may feel bounded by institutional agreements and regulations. For example, insurers may only reimburse treatments that are proven to be effective according to standards of EBM and therefore may not sufficiently allow for tailoring treatment to the personal needs of the patient. HD09 explains how the broad implementation of the EBM style of reasoning, from research to the clinic and beyond, to institutional arrangements, is not without danger:

Evidence-based medicine, with its mono-focus thinking, traditionally, it’s fortunately changing, can also bring real dangers, because what you see is that politics and insurers are very much steering policy and reimbursing on the basis of guideline indicators.

HD13 goes even a step further by provocatively referring to EBM as ‘pharmaceutical-based medicine’. He argues that medical professionals are restricted by the rules and regulations of the healthcare institutions such as the National Healthcare Institute (‘Zorginstituut’), which require treatments to be ‘evidence-based’ before they can be considered eligible for reimbursement. As a result, HD13 claims, we end up with suboptimal medical treatments:

The entire ‘pharmaceutical-based medicine’ is currently ‘the’ steering element of the National Healthcare Institute and of affordable care in the Netherlands, of reimbursed care. And it’s not the best treatment that gets reimbursed, but the treatment that has been the most researched; not the one with the best outcomes.

Another problem that was particularly mentioned in the interviews was that of generalizing medical knowledge from the research context to the clinical context. As diseases and their treatments are commonly researched in study populations that do not represent patient populations in clinical practice – e.g., age range between 18 and 50, mostly Western, male subjects, having only one disease instead of several – a rather homogenous picture of specific disease entities with specific treatments is generated that often does not match the heterogeneous reality in clinical practice. Moreover, while medical research is often focused on curing a disease, or at least reducing its symptoms, patients may in fact have different goals and wishes that need a different approach. Participant HD09 argues that the goals of medical research do not always match the goals of clinical medicine:

So, the average patient in a trial is a middle-aged man. The average user, who is treated according to the guideline based on those trials, is an old woman or one who has more medical conditions and uses several medications. And then it is also the case that those trials are aimed at preventing a new event or surviving. And, for example, not having a second heart attack, not having a stroke. Well, those may be things that are important to someone, but I just said that is often not the most important thing. Those people are not all at about living longer, they care about function preservation. And then it can still be important to prevent that stroke, but then you really have to look at it in a different way.

Especially in case of (chronic) multimorbidity, in which patients suffer from multiple diseases at the same time and also use multiple medications, it can become questionable what is treated, exactly. A set of separate diseases, or the combined physiological effects and symptoms of a multitude of underlying pathologies, or even of the medications used? As a consequence, ‘evidence-based’ treatment protocols could potentially harm patient populations that do not fit the assumptions on which the treatment is found to be efficacious. Furthermore, diseases and also the medications that are used may interact, resulting in a clinical picture that is very different from what is expected. We might describe this situation as one that is epistemologically opaque: it seems to get very difficult, if not impossible, to distinguish cause and effect. HD09 explains:

And then the question is whether it will work the same way with that woman with all those old age conditions compared to what happened with that fifty-year-old man. So, it probably reacts differently as well. It reacts differently, because there are multiple diseases, interaction with disease. And it reacts differently because there are a whole lot more medications, interacting with medication. And it reacts differently because the body is different.

So, while medical research tries to reduce complexity and look into single homogenous diseases and patient groups, in clinical practice disease often manifests very differently.

Communication problems

While participants were generally doubtful about arriving at univocal and all-encompassing definitions of health and disease and favored the idea of conceptual pluralism, some participants also expressed concerns with regard to communication. If we all use different definitions or different health and disease concepts, how do we know we are still speaking of the same thing? As clear-cut definitions are often desired precisely for the purpose of solving ongoing problematic situations in medicine, it may seem paradoxical to accept conceptual pluralism. In practice, having multiple ways to understand a disease can lead to communication problems, participants fear. For example, when medical specialists’ views differ so significantly that they almost literally speak about different diseases, it is questionable if they are still able to sufficiently communicate with each other and their patients.

In an interview with HD08, opposing views on Alzheimer’s Disease among medical specialists were discussed. Alzheimer’s Disease was originally diagnosed on the basis of clinical signs and symptoms, but in recent years a part of the neurologist community has switched to prioritizing biomarker testing (i.e., primarily the presence of beta-amyloid) over clinical presentation. However, the problem is that the group of patients with positive biomarker tests do not completely match the group of patients who get symptoms. Therefore, changing the way of diagnosing Alzheimer’s disease in patients also seem to imply changing the definition of Alzheimer’s disease. Hence, it becomes unclear if medical specialists are still discussing the ‘same’ disease. HD08 says the following about the opposing views:

Well, I think there’s- You could almost say, it’s kind of a clash of civilizations. You have the people who just want a hardcore biological substrate and then have little regard for other aspects. And you have people who say yes, maybe it is not possible to classify it exactly into careful categories, let’s also take into account the less ‘hard’, less definable aspects that are important for the functioning of a patient.

While acknowledging the challenges and pitfalls that come with speaking different ‘medical languages’, at the same time, participants also see benefits of having different approaches towards health and disease. Some of them note that we already are using different languages, scientific explanations and medical classifications, and that this could be viewed as something valuable. In a combined interview with HD13 and HD14, HD14 discusses the different classification systems that are being used for chronic pain patients among different (para)medical professionals:

No, I think you should cherish that, because an anesthesiologist can do things that a rehabilitation doctor cannot do, and vice versa. So, you really have to use each other for that and that also applies to all those other medical specialists and paramedical specialists. So that in itself is not a big deal. What- Or rather, that’s very functional, that’s excellent. At the same time, we must speak each other’s language and that must be the same language with each other, but we must certainly not forget the patient. And, because the patient must also be at the center of our interprofessional communication. And, but also the wishes and needs of the patient. So, if HD13 says ‘I’m good at ICD’, and I’m good at ICF, to put it very bluntly, that’s not going to work. I need to know about ICD, enough to talk to HD13. And HD13 needs to know about ICF, enough to talk with me. But really, we should all be able to know enough to be able to talk to the patient properly.

Thus, interestingly, the suffering of one patient could be classified in several different ways, depending on the classification system that is used. While recognizing the challenges this brings for medical professionals, HD13 and HD14 also see the benefits of looking through different lenses – as long there is sufficient common ground to communicate with each other and the patient. So, concepts of health and disease seems to be approached differently at different levels of care (i.e., primary, secondary, and tertiary lines of healthcare) and between different types of (para)medical professionals. The situation as sketched by HD13 and HD14 seems evident for healthcare as arranged in The Netherlands, where various classification systems are indeed being used in different levels and types of healthcare practices^{Footnote 5}. Every classification system has its strengths and weaknesses. An ongoing challenge seems to lie in being able to sufficiently understand each other’s ‘medical language’.