What does it mean to treat our Patient as a Person?

Dave Nicholls¹ stated that “greater recognition of the patient-as-person, and not just the ‘body-as-machine’ may be one of the most profound influences in future physiotherapy practice.” (I highly recommend Dave’s book, “The End of Physiotherapy,” and its sequel, “Physiotherapy Otherwise). The patient-as-person is one of the 6 domains of person-centered care (PCC) determined by Lanberg et al in their 2019 systematic review. However, what exactly does the “patient-as-person” mean? What does it mean to treat a patient as a person? To answer this question, I think we need to get a bit philosophical, so please bear with me! The discussion of this domain will be a 2-part blog. In this first part, I will explore 2 theoretical approaches that can help us to understand what it means to treat the patient-as-person. The first is the capabilities approach, which may be expanded upon by the second theory, enactivism.

The Capabilities Approach to treating the patient as a person

In their capabilities approach to the patient-as-person, Entwistle and Watt2 offered an ethical approach to human interaction. They considered the concept of “a person” and justified treatment of humans based on this ethical approach. A person possesses “abilities to reason and communicate, emotionality, abilities to act intentionally, self-awareness, self-regulation, the potential to suffer in particular ways, and interests in preserving and developing self-identity.”² These characteristics differ in prevalence and how they emerge in different situations. Humans are socially situated beings. Thus, patient preferences and values are shaped by social interactions. So while acknowledging preferences and values is a noble way to honor individuality, we must understand that these are affected by the patient’s “capabilities” formed via social and biographical narratives. Treating patients as persons therefore requires recognizing and nurturing the “capabilities” of the individual.²

The premise of the capabilities approach is that a meaningful, good life is the result of the presence of capabilities that allow valued functionings. The person has the opportunities for action that permit them to engage in activities or to exist in ways that are important to them. Focusing on capabilities rather than functionings in healthcare allows the patient the freedom to choose their activities. This avoids imposing ideals on the person. For example, focusing on the capability to be independently mobile in the community, avoids restricting the person to ambulation. It leaves room for other modes of movement such as via wheelchair, or with a 24-hour caregiver who drives the person around the community.

This capabilities approach has two main concepts: “functionings” and “capabilities.” Functionings are actions or ways of being, for example, preparing a meal, walking the dog, being healthy or being literate. Capabilities are the opportunities that allow a person to achieve certain functionings. They are shaped by the social environment, past and present, in which persons are embedded, including social relationships and the physical space the person shares with others. To walk the dog, the person must be physically able to walk, have a dog, a leash and be able to manage the dog on the leash, as well as have an available safe space, free from excessive and dangerous traffic, in which to walk the dog. To be healthy, the person must have access to medical care and good food, a clean environment, and strong social relationships. Such a capability is more socially and environmentally shaped compared to walking the dog, which is more of an individually acquired capability.²

A certain subset of capabilities is particularly associated with the concept of personhood. According to Entwistle and Watt,² the subset includes “capabilities to reason, to feel and to respond to emotion, to intend and initiate action, to be self-aware and self-directing, to experience particular kinds of suffering and so on, and capabilities to participate socially in a group or community of beings.” These are referred to as person-al capabilities, to emphasize the ethical focus on the “person.” Thus, to treat a patient as a person requires us as healthcare providers to recognize and cultivate the patient’s person-al capabilities.

Enacting a capabilities approach in the clinic requires us to treat patients as ethical beings, persons within a social group. Respect and compassion, responsiveness to subjective life experiences, the patient’s unique history, and identity and life world are key considerations.² But what does this look like in the clinic with the patient in front of us? It could be validating the difficult journey the patient has had with her condition. It could be supporting that single mother who cannot come to PT more than once a week because she has no help with her children. That support could look like an individualized exercise program that she can do without much equipment at home on her own. It could be using motivational interviewing to help a patient improve their motivation to exercise for better health.

Another consideration when thinking about how we treat patients as persons is an understanding of the need to support the patient’s capabilities for autonomy.² This consideration rejects the consumerist approach to healthcare where our patient is solely responsible for decision-making, yet it respects the ethical principle of autonomy. While some patients may have limited competence in decision-making, such as the intellectually challenged or mentally ill,² or persons with low health literacy and education,^3,4 we can still elicit their capabilities for autonomy in different ways. These can include helping them with reasoning, discussing what is important to them, and helping them develop self-trust or self-efficacy.^2,5,6

The Enactive Approach

The notion of capabilities is similar to that of affordances used in the enactive approach. Like the capabilities approach, the theory of enactivism also focuses on the personhood of the patient. It has its foundations in phenomenology and the works of philosophers like Husserl, Merleau-Ponty, Gallagher and Varela.⁷ It rejects the strict biomedical, reductionist views that sense-making is confined to the brain and its cognitive and neural processes. Rather, it posits that humans are embodied and action-oriented. They make sense of their world through the interplay between themselves and their environment, including their social and physical environment, in which they are embedded.^7–9

Persons interacting with the environment perceive opportunities for action. These perceived opportunities are called the field of affordances, which is the set of relevant possibilities for action. The field of affordances is situated within a larger landscape of affordances, which refers to all the possibilities for action that can be created and restricted by the healthcare system and society. Persons will act based on their own field of affordances. This field is determined by their body and their first-person perspective at a particular time in a particular situation.⁹  There are therefore temporal and relational aspects between a person and their environment which gives rise to the idiosyncratic and variable nature of affordances.

There are four dimensions that determine a person’s field of affordances. Affordances within the field may differ in salience. An affordance may be experienced as more or less relevant (salient) in a particular situation. A person will therefore act upon those affordances she perceives to have a higher salience or force to act. The field of affordances will therefore shrink or expand depending on the number of action possibilities that the person perceives as relevant.⁸

Affordances may also differ in valence. This refers to the attraction or aversion the person associates with an affordance. Affordances with high aversion or negativity are avoided, while those that are attractive or more positive are more likely to be acted upon. If the field of affordances contains many positive possibilities for action, there may be more active engagement with the environment. Conversely, if there are more negative affordances, then the person perceives the environment as threatening and is likely to avoid interaction and withdraw from the world.⁸

Affordances can also differ in perceived mineness. This refers to how the affordance is experienced as being a part of who we are, a part of our identity. Coninx and Stilwell⁸ use the example of running a marathon. For some it may just be seen as a challenge, whilst for others it may be viewed as an achievement that is tightly bound to their self-worth and identity. The degree of mineness differentiates affordances that are simply relevant from those that hold significant meaning to the person. Affordances with greater mineness reflect a close relationship between the person and the world, while those with less mineness reflect alienation and a decreased motivation to act.

The final dimension of affordances is the temporal horizon. This refers to how the patient views the affordances changing with time. A person who perceives many affordances with negative valence and low mineness may feel trapped and pessimistic if there is no foreseeable chance of future improvement in the field of affordances. On the other hand, if the person anticipates an improvement in the field of affordances in the future, then they are likely to be more optimistic.^8,10

To illustrate the notion of affordances, let’s use the example of lifting with low back pain (LBP). The person with LBP is an active gentleman who is a keen power lifter, and for whom returning to the gym is very important. He is presented with the choice of whether to lift an a case of beer. He may choose not to lift the case because it is viewed as a threat. It has a negative valence (affiliation). If the environment is such that there are 6-pack sleeves nearby which he can use to divide the case of 24 into 4 six-packs and move them separately, then he may choose to do this. The environment “affords” this option. This affordance (the 6-packs) has less negative valence and a greater salience (relevance), and therefore a stronger, more attractive force upon which to act.⁸

Because lifting is part of his identity as a power-lifter, lifting has greater mineness.  He may therefore view lifting with a more positive valence and higher salience, and thus be more amenable to lift objects he feels able to handle rather than avoid lifting all together. He is motivated to return to the gym and has an expanded temporal horizon where he sees himself working with his physical therapist, with whom he has a good relationship, and whom he trusts to progress him into lifting heavier objects with time, until he can return to his previous weight. Thus, for this power lifter with LBP, embedded in his particular environment, “embodiment and meaning is always relational – created through interaction with others, including clinicians. Pain is dependent on meaning, which is never context free.”⁷

The way I see it, is that our patients’ affordances and/or capabilities are determined by how they, as unique individuals, interact with their environment, including those other persons within it. Thus, the elements from their unique personhood is woven together with their environment to create a tapestry that is manifested as their capabilities and affordances. The 5 E’s of enactivism can help explain how this manifests.

The 5 E’s of enactivism:

There are ‘5 E’s’ that ground enactivism, which reflect a new way of thinking about cognition and how persons make sense of the world. The ‘5E’ theory proposes that cognition is 1) embodied, 2) embedded, 3) enacted, 4) extended, and 5) emotive.⁷ Embodiment refers not only to the physical expression of some idea/thought/feeling, but recognizes that meaningful experience is shaped by being embedded in, and relating to, the physical, social and temporal environment. A person’s behavior and posture reflect their perception of their environment. As described by Moya,¹¹ Gallagher and Zahavi showed that “perception is not a passive reception of information, but instead implies activity, specifically, the movement of our body.” Merleau-Ponty differentiates the ‘lived body’ from the ‘living body’ in order to highlight the first-person experience, or what it means to be embodied. The living body refers to the more biomechanical processes of kinesthetic movement and how we move. This is the ‘body-as-object.’ The lived body involves the first-person subjective experience – the ‘body-as-subject.’

Stilwell and Harman⁷ cite a number of studies that demonstrate this lived body in persons with pain. For example, pain can increase perceptions of distance compared to pain-free controls. Thus, a person in pain may perceive the distance to be walked uphill as being further than the distance perceived by someone without pain. Another study demonstrated that by embodying the illusion of a strong and muscular back, patients with low back pain and negative beliefs about their back were able to lift an object with less pain and fear compared to when they visualized their back as normal, or not strong.¹² This is the body that has agency, and is actively engaged in and responding to the mind, itself and the environment.¹³ The embodied person is therefore a product of being embedded or immersed in the environment.

Through a person’s embodied interaction with the world, cognition or meaning is enacted or brought forth.⁹ We can attempt to understand how a person makes sense of their situation by how they enact their perceptions. To understand this in greater depth, I like to draw on Stilwell’s descriptions of previous works by Varela and Gallagher.⁷ Living organisms are considered autopoietic systems. An autopoietic system is an “operationally closed system that is self-creating, self-maintaining, precarious”⁷ and adaptive. Although a closed system with boundaries, autopoietic systems can interact with the environment in a form of structural coupling that results in sense-making. This is then “enacted (brought forth) through an organism’s embodied interaction with the world”⁷ in which it is embedded, and which offers certain affordances or opportunities for action.

As autopoietic systems are precarious, they are under threat from the unpredictability of changes within the environment and self. The system must therefore adapt to threat by regulating the relationship between the organism and the environment. This concept is well-illustrated in persons with CLBP. If pain is seen as a protective response to threat, then the person in pain regulates their system by reducing their perceived field of affordances. This can include actions such as avoidance of activities with negative valance like lifting, exercise and work, and facilitating affordances that become more salient such as rest, seeking care from a HCP, and changing the way they verbally and non-verbally communicate with friends and family.

In the clinical encounter, the provider acts as a participant in the patient’s environment through whom the patient generates meaning. Together, through their interaction, the patient and provider as 2 interacting autopoietic systems, make sense of the situation together. This is called “participatory sense-making,” which occurs when two people, both of whom are embodied and embedded in the world, interact and connect to produce meanings of a phenomenon which could not be produced by one person alone.⁷ This has deep implications for the therapeutic alliance in healthcare.

We also make sense of phenomenon through emotion which we attach to our perception of things. Thus sense-making is also emotive, which is the fourth ‘E’ of the enactive approach.⁷ We direct attention and act on things in the environment that we care about, such as threat. Cognition and emotion are tied closely together because of our embodied and embedded character. Thus, “emotion should be conceptualized as a faculty of the whole embodied and embedded organism.”⁷  We therefore enact versions of our emotions that reflect our perception of the experience in an attempt to self-regulate and manage the perceived threat.

Emotions such as fear and anxiety in the person with CLBP may be enacted by managing the field of affordances. If sitting is associated with increased pain, chairs may take on a negative valence and be avoided as the person would have increased fear and anxiety over the action of sitting. Conversely, a bed or couch may become more salient if the patient perceives it as helping to reduce pain and “decompress” the spine. The patient would have a more positive perception of lying and therefore beds or couches would assume a more positive valence. However, distraction from sitting through being embedded in social engagement with close friends may result in decreased perception of pain. The patient may therefore be able to sit for longer periods during these positive social experiences.

This example reflects studies that demonstrate that focusing attention away from threatening affordances can reduce pain.^7,14 Moseley and Arntz¹⁴ designed an experiment where a stimulus (-20 degrees C) was touched to a subject’s hand at the same time a light connected to the stimulus was displayed. The light displayed was either red (to indicate heat, and tissue damaging) or blue (to indicate cold, less tissue damaging) and subjects were asked to rate their pain experience. The stimuli paired with the red cue was rated as hot and more tissue-damaging, and therefore the pain was more unpleasant and intense than the stimuli paired with the blue cue, which was considered less damaging. Thus, attention to an object in the environment can moderate meaning. How we conceptualize meaning is therefore contextual. Stilwell describes this as being “enactive-emotive where verbal suggestion, visual cues, and other contextual factors combine with past experience, knowledge, and attention/expectations to form meaning.”⁷

The four of the five ‘E’s’ described above clearly demonstrate the close relationship between the mind, the body and the environment. The fifth ‘E’ builds on this and describes the “extended mind.” It contests the common belief that cognition has boundaries, such as the skull and skin. It also contends that the person does not construct a model of the world. Rather, the person is the model because the person embodies their own model. They are inseparable from the world, which shapes them and is also shaped by them.⁷ For me, this is the essence of what it means to be a person, and how we should consider the personhood of our patients.

Enactivism therefore offers an all-encompassing framework to understand the patient, her unique values and preferences, and what it means to be a person. Appreciating the patient-as-person, requires a comprehensive view of the embodied patient’s world – the patient’s “big picture.” From this position, we as  HCPs can determine the most appropriate intervention, and approach to our relationship with out patients. I therefore believe that an enactive healthcare approach to the patient-as-person is the foundation of person-centered care.

So, I bet that after this deep philosophical dive, you’re certainly more than ready for a break. I’ll end part 1 of this topic here. Part 2 will be less intense and more empirical, so stay tuned because I hope to drop it soon!

Please feel free to comment on the topic or ask questions below! Also, I welcome all feedback and healthy discussion!

References:

1.         Nicholls DA. The End of Physiotherapy. Routledge; 2018.

2.         Entwistle VA, Watt IS. Treating Patients as Persons: A Capabilities Approach to Support Delivery of Person-Centered Care. Am J Bioeth. 2013;13(8):29-39. doi:10.1080/15265161.2013.802060

3.         Hirpa M, Woreta T, Addis H, Kebede S. What matters to patients? A timely question for value-based care. Fong ZV, ed. PLOS ONE. 2020;15(7):e0227845. doi:10.1371/journal.pone.0227845

4.         Wang MJ, Lin HM, Hung LC, Lo YT. Non-health outcomes affecting self-care behaviors and medical decision-making preference in patients with type 2 diabetes: a cross-sectional study. BMC Med Inform Decis Mak. 2020;20:74. doi:10.1186/s12911-020-1095-2

5.         Cribb A, Entwistle VA. Shared decision making: trade-offs between narrower and broader conceptions: Ethics of shared decision making. Health Expect. 2011;14(2):210-219. doi:10.1111/j.1369-7625.2011.00694.x

6.         Entwistle V, Cribb A, Watt I. Shared decision-making: enhancing the clinical relevance. J R Soc Med. 2012;105(2012):416-421. doi:10.1258/jrsm.2012.120039

7.         Stilwell P, Harman K. An enactive approach to pain: beyond the biopsychosocial model. Phenomenol Cogn Sci. 2019;18(4):637-665. doi:10.1007/s11097-019-09624-7

8.         Coninx S, Stilwell P. Pain and the field of affordances: an enactive approach to acute and chronic pain. Synthese. Published online 2021. doi:10.1007/s11229-021-03142-3

9.         Stilwell P, Stilwell C, Sabo B, Harman K. Painful metaphors: enactivism and art in qualitative research. Med Humanit. 2021;47(2):235-247. doi:10.1136/medhum-2020-011874

10.       de Haan S, Rietveld E, Stokhof M, Denys D. The phenomenology of deep brain stimulation-induced changes in OCD: an enactive affordance-based model. Front Hum Neurosci. 2013;7. doi:10.3389/fnhum.2013.00653

11.       Moya P. Habit and embodiment in Merleau-Ponty. Front Hum Neurosci. 2014;8. doi:10.3389/fnhum.2014.00542

12.       Nishigami T, Wand BM, Newport R, et al. Embodying the illusion of a strong, fit back in people with chronic low back pain. A pilot proof-of-concept study. Musculoskeletal Science and Practice. 2018.

13.       Øberg GK, Normann B, Gallagher S. Embodied-enactive clinical reasoning in physical therapy. Physiother Theory Pract. 2015;31(4):244-252. doi:10.3109/09593985.2014.1002873

14.       Moseley LG, Arntz A. The context of a noxious stimulus affects the pain it evokes. Pain. 2007;133(1):64-71. doi:10.1016/j.pain.2007.03.002