There is much commonality between us as people. We share physical structure and trajectories of development. Much of what we are or happens to us is reasonably predictable or stable across groups of people.
This kind of commonality is also a feature of many physical disorders, such as severe genetic conditions like phenylketonuria, or a child’s greenstick fracture of the arm incurred by falling off a playground swing. Of course even these predictable disorders give rise to unique ‘stories’ for the patients involved, and their families. But at a useful level their management can be reasonably and safely ‘guide-lined’, at least in respect of what the immediate physical treatment response should be after their detection.
But there is a problem, because modern medicine and its guideline industries function almost entirely around this kind of commonality, around essentialised generic features and trajectories of physical diseases irrespective of their complexity.
I have been intimately and uncomfortably involved with the processes of Guideline construction for the common condition called Chronic Spontaneous Urticaria. Every four years allergists and dermatologists from around the world meet in Berlin to assess the literature evidence for effective drug treatments, and to vote on what should or should not be in the Guidelines for the next four years. Centres of Excellence (so-called) for the treatment of Urticaria are being formed around the world, partly around compliance with such protocols. The foci of this Urticaria Consensus Conference include the Randomised Control Trial evidence for the effectiveness of drugs, biological markers of the disease, and the learned views of competing, voting experts, influenced by lurking issues such as biological causation, professional reputations, health economics, practice structures and commerce, and clinician-pharmaceutical company interdependence.
Certainly there is considerable concern in this consensus conference about patient quality of life, and a growing awareness of the need for ‘personalised’ medical approaches to each patient, which largely focuses around how to sort out the best drug for treating a particular case, or ‘object-body’, or physical phenotype.
Some clinicians will acknowledge privately that stress can be a factor in chronic urticaria, but stress is hardly considered central to clinical consideration, and the time given to emotional factors in these discussions is negligible.
And yet, in my clinical experience, addressing the ‘story’ in chronic spontaneous urticaria massively reduces the need for drug treatment, and virtually none of my patients require the use of drugs like omalizumab (hugely expensive and non-curative) or cyclosporine (an immunosuppressive agent with significant side-effects), which are used extensively internationally.
This pattern of physician response, in which the subjectivity aspects of a patient’s personhood are considered irrelevant to the healing trajectory, is typical of the treatment of most physical diseases in Western healthcare.
What to make of all this from a whole person treatment perspective?
A person is not a series of compartments (mind, body, spirit or whatever dimensions we consider typical of personhood) tenuously interconnected like space station modules with awkward, hard-to-negotiate corridors. That is the erroneous dualism of modern medicine, in which, with respect to the management of physical disease, the mind module is ‘out there’, separated, beyond the physician’s sight and interest. The body compartment is sufficient for him. All the relevant activity occurs in the ‘object body’, or so he believes. The ‘subject body’ is ‘unthought’.
Persons are unitive wholes. Our bodies and our subjective, experiential or mental capacities are developmentally co-emergent from the beginning of life. Illnesses arise within this unity, this indivisible integration of physicality and subjectivity, and are therefore potentially, even inevitably, multifactorial and multidimensional.
More than that, every disease emerges in a unique whole, the person, who is both uniquely bodied and uniquely storied, notwithstanding some important features in common with other persons. This latter commonality does justify certain levels of guide-lining, but neither commonality, nor guidelines wrapped around commonalities, are a universally sufficient focus for good clinical treatment.
I want to examine this problem from the perspective of whole person care in which we assume:
• Persons are unitive wholes
• The uniqueness of each person, both body and ‘story’.
• Normative biomedical approaches are part of the approach to the whole
• The unique story gives access to more of the whole person
• Body (normative medical) and Mind (or ‘story’) data are both there to be mined
• Responding to both is therapeutically relevant
• The clinical relationship allows both kinds of data to emerge
Given these emphases, it is obvious that the orthodox biomedical approach and the whole person approach can be compared and contrasted in numerous ways. But, in the context of a Guideline discussion, the focus here will be the structure and venue of clinical activity.
At risk of over-simplifying the matter, the structure and venue of orthodox biomedical activity is:
• The object-body (and its symptoms) of the patient as object of interest
• The expertise of the clinician, powerful and agentic
• Emphasis on drugs and physical measures altering the structure and behaviour of the object-body
• The patient as both choosing and yet passive in receipt of this power
Given this framework, guidelines are structured around research evidence concerning the effectiveness and safety of drugs and technical procedures. This evidence is largely based on RCT analysis of treatment of patients grouped according to commonalities (specific diagnostic patterns). Individual uniqueness is erased in such a process. These guidelines inform the clinician what he/she could or should do next, as long as the patient agrees (which is where choice starts and finishes).
Thus in biomedicine the venue of activity, information, and power is effectively constituted as largely external to, but, of course, directed towards the patient. And this works very well when common sense and pragmatics dictate a focused attention on the ‘object body’, for example in pencillin treatment of a sore throat to prevent rheumatic fever, or the many other circumstances where the biomedical focus has proven a boon to humanity.
But how does this work if we must include consideration of the ‘psychosocial’ or story or life experience elements in this approach?
The first is the ‘clip-on’. In my experience this appears in institutions as a (short) seasonal enthusiasm for person-centredness, emphasising ‘social and moral language’ and focussing on such values as collaboration, respect, participation, and empowerment.
In reality, this model takes the form of a central biomedical focus and practice, but with an adjunctive wrap-around or clip-on ring of humanistic values, hopefully permeating a bit into the fundamental core. It assumes a fundamental and essential biomedical base mitigated or improved by a desirable (but not fundamentally essential) humanistic influence. In this attempt to be more person-centred what I see is clinicians and systems constantly defaulting back to the much more highly valued biomedical focus, like a compass needle swings back to North.
The second response is even more frustrating. We ask a psychologist or psychiatrist to investigate the ‘stress’ or affective elements associated with a physical disease presentation and the responding clinician may go looking for diagnoses of anxiety or depression, or in research studies apply psychological measurement scales exploring anxiety, depression, anger, or stress. The patient becomes a tested ‘feeling object’, analogous to the way the physician applies his predetermined investigative grids to the ‘object-body’ in diagnosing physical disease.
I do not discount the usefulness of such scales under some circumstances. The problem is that if the scales do not pick up individual ‘stories’ (which generally they don’t) then the patient with ‘normal’ readings on the scales will be cleared of ‘story’ involvement in the disease. If one thinks about it for a moment, the story being pursued here is the clinician’s assumptions (already-decided ‘story’) about what is going to be important.
In contrast to this biomedical venue, with its focus on external clinician activity, information, frameworks, and power, the primary venue in whole person care of physical illness is the individual clinical relationship. Why?
Because physicality and subjectivity, or body and mind, are indivisible and potentially crucial for the emergence of illness, neither can be neglected. No one doubts that we must attend closely to the bodily symptoms and to all the good things that biomedicine has brought to this part of the healing venture. But we must also ask and listen for the patient’s ‘story’ too. It is just as important, and frequently more important than the biomedical data.
The consultative clinical relationship has to now change to become a ‘space’ in which both body and mind (‘story’) data can emerge. Because the patient is unique and individual the ‘story’ cannot be done adequately with instruments that focus on commonality.
The trajectory of biomedicine over the last century reveals that biomedical data collection and response can be enacted very technically and non-relationally (though patients hate being treated impersonally). But the ‘story’ part absolutely requires warm empathic relationship, if we are going to hear from the patient what was really going on when they got sick.
“I felt like she really listened to me, she didn’t just throw questions at me like a lot of previous people I have seen did.. She’s not intimidating, she’s not sort of sitting there legs crossed just you know…. her mannerisms and the way about her made me feel very comfortable as opposed to some other people who I have seen who seem very you know like I’m just another product”.
Being Seen as a ‘Whole’: What can clinicians learn about caring for chronic illness from persons’ experiences of non-dualistic healthcare in a biomedical setting?
G. Barhava-Monteith PhD Thesis 2017
So, really, is the whole person approach just about warm and compassionate relating? Not at all. There are plenty of nice, warm and compassionate health professionals who are thoroughly biomedical in their orientation, and to whom the patient’s story is entirely invisible.
But the shift to privileging and focusing on the relationship is the beginning. It is in this framework of relationship that one actually seeks the ‘story’ of the person (the patient) who is a non-dualistic unitive whole.
In this process of relationship, the patient and the clinician shift from an object/expert dyad to a more two person dyad in which both the biomedical data and the story data emerge and can be included and responded to. The patient tells about his symptoms and his unique story. The clinician brings into the relationship his/her relational capacity and his professional knowledge and expertise. It is here in the relationship that non-dualistic attention to all the dimensions of illness can be enacted. Both persons are properly present, trusting and collaborative. The body and its symptoms and the wider subjective story can both be included.
In another perspective the issue is ‘who gets to select the story data?’ From the externalised perspective of the biomedical model the clinician goes hunting for what he or she already knows, from her study of groups of patients who have the disease X in common.
From the whole person perspective the importance of the unique, subjective ‘story’ relevant to the disease means that the clinician and the patient must move into a relational mode in which the ‘story’ can/will emerge between them. Of course the clinician brings his or her background knowledge of people and other ‘stories’ into the frame but there is a recognition of the uniqueness of each story, which prevents jumping to conclusions.
Margaret Drabble, the British novelist, in her book The Sea Lady, tracks the experience of two distinguished academics as they journey separately to an awards ceremony and a precarious reunion after three decades apart. In the story Drabble utilises the device of a commentator titled the Public Orator who, reflecting on the evolution of the story so far, says:
“we know we are on a journey….not even the Orator knows the shape of the end….the Orator’s problem lies in the selection of memories, of anecdotes, of telling moments. In the selection lies the meaning. From the selection, for better or for worse, will unfold the sequence and the ending……..The Orator disdains the primary vulgarity of plot…….The Orator is stubborn and fastidious. If there is no meaning, then meaning will be withheld, renounced. It is all so easy to impose a semblance of meaning. It is all too easy to play tricks, to conjure up fantastic reconciliations, where Jack shall have Jill and nought shall go ill. Most fall back wearily on such devices.”
(words in bold, my emphasis)"
One of the things we see Drabble playing with here is the problem of the expert selecting beforehand, prematurely, what he or she will look for, foreclosing on possible emergent outcomes, by prior definition of plot.
Who knows, and who is best to tell the story behind and woven into a disease? Of course it is the patient. We must restrain imposing our meanings on patients. That is why relationship is so central, and unless it has certain qualities the patients will not tell us those crucial, unique, individual things deeply relevant to the emergence of disease.
Putting it another way the clinician must not only believe in a unitive, non-dualistic whole but also be ‘expert’ (sic) in relationship. In that ethos, the clinician can ask what was going on around the time of the start of the illness, and listening very intently to the words of the patient, will get the opportunity to hear and respond to the material ‘selected’ by the patient to express his or her meaning.
This kind of relationship-based expertise is radically different to the orthodox externalised, knowledge-based expertise typically privileged in the biomedical framework of care.
How does one create a guideline around such material?