Communities of Care: From Systems to Lifeworlds

From Systems to Lifeworlds.

“The ‘art of Improvement’ is the radical notion that patients are  people “. Improvement is not a disinterested science. But, humanism per se, as embodied in the individualistic notion of ‘care’, though necessary, is not a sufficient condition.

The true venue of healthcare quality is the community . Systems thinking, if taken seriously, requires that we acknowledge the community and not merely ‘the system’. Healthcare is always a subsystem of society. Without community there are several dimensions eg  equity that cannot be optimized. This cannot be approached by incrementalism or rolling up but only by flipping healthcare. The idea of ‘communities of care’ [ not just communities of practice ]  is the fulcrum.

The patient- centered movement as located within ‘systems’ is likely to be short-lived. For one thing , it operates against the gravity of human psychology. It is impossible for the person who knows and who has worked to get there, to be at the beck and call of the patient. It merely offers a ‘romantic view’ of the market. In the largely mechanized world of manufacturing , Deming’s  call to include the customer in the system was indeed revolutionary. The problem in medicine was not that the patient was outside the system. So let us step back and understand the problem we are trying to solve with ‘patient centeredness’.

None of the quality guru’s with a possible exception of Genuchi Taguchi were concerned with societal costs. Deming, so to speak, explicitly equated the market to the world. In the adoption of improvement methodologies the ‘target problem’ was variation or specifically ‘unwanted variation’. With Patient Centeredness , even if we treat it as a extension of ‘customer focus’ the target problem is the lack of ‘ wanted variation’ or customization. However, Medicine’s ontological challenge is that  it is hyper-personal. We now even  have genomic personalization. So the problem that patient centeredness is setting out to solve is not a epistemic one of variation but a metaphysical one of gross reductionism: The objectification by the clinical gaze. Of reducing the ‘subject’ to an ‘object’. The patient as a ‘case’ , ‘case number’ or simply a thing. Merely , co-opting the patient in co-design, in decision-sharing of process are insufficient as antidotes to ‘de-personalization’. Empowering patients to go beyond ‘needs’ to ‘wants’ is expecting improvement without change. It addresses itself to the challenge of choice and not the challenge of chance.

The quality improvement movement in healthcare had four legacy domains to address but did not do equally well. The first was the polemic with ‘quality assurance ‘ which it found easy to do. It however did not do as well in engaging with the legacy of evidence based healthcare. It was at best apologetic. There were limited attempts to ‘integrate the methodologies’. The third domain is the domain of care. Here again , it has made minimal impact . The agenda ahead is the need to ‘integralise care’. The fourth domain is the community . The agenda ahead is the ‘socialization of quality’. These characterizations are merely the domains constitutive of healthcare and from the point of view of the discipline of Improvement Science.

This post is limited to issues relating to the third and fourth domains. At the risk of crude summarization I wish to re-allocate these two domains to the concept of lifeworlds thus : Micro-life worlds and Macro-lifeworlds. Drawing inspiration from Herbert Marcuse’s complaint of the world becoming ‘one dimensional’, I am suggesting that micro lifeworlds are best constituted by the ‘aesthetization of the personal ‘, while the macro lifeworlds by the ‘aesthetization of the social’. In an interview quite late in his career Donabedian identified the ‘aesthetics of care’ as the final frontier of healthcare quality. Improvement Science in its leap to legitimization has unfortunately neglected the indispensable  role of the art. In the second edition of a classic book on improvement, the authors re-titled a chapter ‘ The Art  and Science of Improvement’ and foregrounded it as merely ‘The Science of Improvement’. The authors have equally championed the ‘art of improvement’ for years and this change shouldn’t mislead newcomers to believe that improvement is a purely ‘positivistic ‘ endeavour.

Prof. Dave Gustafson was among the earliest champions in flipping healthcare. He systematically shifted the focus from patient satisfaction to patient needs or even simply preferences. The idea of undertaking ‘patient journeys’ by literally having himself moved around in a gourney holding a video camera is part of the healthcare improvement folklore. Soon enough there were hospitals that figured out that patient spend most of the time in the supine habitus and had their ceiling covered with paintings, rather than have them on the walls.

The term aesthetics acquired its connotation of being related to art only in the 18th century, with the work of Baumgarten. Interestingly , he was attempting to create a ‘ science of art’. The original connotation derived from the ancient Greeks was aesthesis or sensation or experience.[ The word anaesthesia is merely its apposite, the absence of sensation]. In attributing aesthetization to the life-world I have still to explain for inter-subjectivity. This is the original move from the early to mature Husserl: Phenomenology as a non-empirical science founded on absolute subjectivity to the life-world of inter-subjectivity. Without wading too deep into philosophical waters one does find scope for universal intent in subjectivity, in the Kantian notion of ‘sensus communis’ in aesthetic judgement.

The demand for more time , more civility, more role in decision making  etc are not issues to be negotiated at the level of the doctor-patient relationship but at the level of value expectations of the community. The system will be strained as, unlike the ‘efficiency initiatives’, the ’empathy initiatives’ do not have any potential to reduce workloads. Secondly, medicine and caring professions have always been patient centered and have arisen only because there were people with compassion for the needy. Thirdly, the patient is also member of the community and ‘sick role’  is only a temporary and temporal identity. It is important to look at the ‘patient’ always as part of the community.  For this we need alternative ontologies of caring , we need ‘open hospitals’ ie hospitals without walls [ metaphorically]. Merely, instrumentalizing compassion at the bedside  is not enough. The clinical is always political and social.

We need to empower communities not patients. It takes a community to keep a person healthy. The capabilities for quality are not built within systems but within communities. Systems constitute only the supply- side of the equation. The demand for quality, value, safety , sustainability or cost effectiveness has to come from society. There is no need for making distinction between health and healthcare system. You cannot have health without limiting or eliminating disease. Communities without care cannot be crucibles of excellence.

The current formulations of population health actually is about the system acting upon the population:loosely described as the social determinants of health.What is required is not community based  healthcare but community led healthcare. The Jon Hoping country experiment led by Goran Henriks is definitely exemplary but the ‘conditions’ of its success have not been theorized.Community led healthcare can provide a basis for ‘health as a human right ‘ rather than merely ‘ healthcare as a human right’.

The idea of community and aesthetics is a watershed in the methodology of improvement science. Don Berwick in his earlier plenaries would often show case the magnificent humanism of improvement. One of my favourite articles of Berwick is the less well known ‘Quality comes home’.  He continues to call for a curriculum on suffering, and following him, we in the developing world, would in addition call  one for community [including  the inter-sectionality of urbanism, poverty, violence and of course ‘Art’ and Humanities .]

In the rush to agrandize improvement as a science, the art has been forgotten. This post is a call to take stock of the discipline. To raise the ‘question of beauty’ in Improvement Science.  In the history of the healthcare improvement movement before it metamorphosised into a science the ‘idea of value’ and the ‘value of ideas’ has predominated the work of Maureen Bisognano. Fortunately her plenaries are available publicly to help make course correction: The demonstration of the capillary power of improvement science, that goes further than the arteriolar force of sciences such as Implementation, Translation  etc. The preservation of the aesthetics of inquiry: the ‘art of improvement’ requires the idea of beauty, besides  knowledge and virtue.

When a group of ‘sciences’ are brought together, as in the system of profound knowledge, there is equal probability that the discipline that arises is an ‘art’ and not necessarily a ‘science’. Arts are, in a sense, even founded or dependent on sciences. The histories of art such as Painting have benefited by developments in technology , the progress of chemistry and the advancements in optics.  Art and science are not the same but neither are they mutually exclusive.

The tension between science and art is neither new nor limited to medicine or improvement. While there is rich literature on pyschoanalytic art, it is a historical fact that Freud  readily admitted that psychoanalysis ‘must lay down its arms before art’. We have a similar situation where the “‘medicine’- ‘management-consultant’ complex” [ Relman would have forgiven me for this term] has arrived at a limit, if not a threshold, beyond which it cannot proceed without humility: they must learn from Medicine.

The idea of an ‘ engineering model of medicine’ or ‘chassis model of healthcare’ [ I don’t remember if it was Dr Kenneth Kizer who identified the trend in those terms]  has its limits . It is very difficult to imagine a shop-floor worker who is passionate about his widgets but medicine has survived thousands of years because of the passion of those providing care. This explains why healthcare embraced quality more fervently than other non-manufacturing disciplines like software , education or government.

The dynamics of clinical practice cannot and should not be reduced to ‘factory physics’ and its attendant ‘logic of consistency’.We must clearly differentiate problems due to ‘ undesired  variation ‘ and problems due to ‘ reductionism’  or the lack of ‘desired variation’.  Patient centeredness is more than ‘ mass customization’. Healthcare and Healthcare quality must in its turn centralize the ‘ idea of community’ [social and political] and recover the practical [ethical and aesthetic] imagination. Well, it would be even better to combine the two.



This post is inspired by Habermas’ distinction between systems and lifeworlds [as well as dialogical communities]and Agamben’s and Nancy’s ideas on community[singular communities]. I hope to update the post as I continue to read them more closely.  The arguments  for ‘art of science’ is from the philosopher James Blachowicz’s  book ‘Of two minds’. You can read an essay by him in the New York Times here: There is no Scientific Method    which is not without critics   . Dr Abhram Varghese’s call for preserving the ‘art of medicine’ are definitely additional influence. The quote at the beginning of the post is modified from the feminist  literature.







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