Insights from theory

A good theory provides new insights, alters your thinking, and leads to a paradigm shift. On this page, I consider some new ways of thinking about rehabilitation not covered on other pages. Some strengthen the arguments supporting existing principles; up to this point, the ideas seemed correct but could not necessarily be justified. Another gives a new take on a long-standing, much-discussed problem: how health is defined, especially for people who are born with atypical features, such as cerebral palsy or acquire some persistent but stable loss, such as the amputation of a foot or a spinal cord injury.

Introduction

Rehabilitation grew out of a biomedical approach to healthcare. Although most professionals now accept that rehabilitation should be holistic, person-centred, and tailored to a patient’s needs, the biomedical approach still affects professionals, patients, and families. One often hears phrases referring to patients as non-compliant, unmotivated, or disengaged. Many people still consider rehabilitation as a treatment, and even those who understand that rehabilitation is a process still think of therapy and other interventions as treatments. The biopsychosocial model of illness has helped to reframe perceptions, for example, emphasising the need to be person-centred. However, the change has been small and patchy.

The General Theory of Rehabilitation frames rehabilitation in a completely new way. Rehabilitation is not the main process leading to change. The primary process is adaptation, the only response available to anyone facing a challenge. Adaptation to the environment is a fundamental property of all living organisms, daily and over generations, through evolution. In this context, rehabilitation is an assisting resource, just as the internet, friends, and technology are resources we all use to help us when necessary.

This page explores some of the implications of this approach and the insights it offers.

Insight-1: patients are active, not passive.

Patient involvement in their rehabilitation has been increasingly emphasised over the last 20 years, but mainly because people should take an active interest in their healthcare. There has been no solid drive to encourage it throughout healthcare, and services are often not centred on the patient. The patient is expected to adapt to health service routines and rules.

Once one recognises that a patient is adapting to their illness and that adaptation is an active process that the patient directs, the importance of being person-centred and understanding the patient’s perspective becomes evident. This imperative applies across all healthcare. Our failure to acknowledge the vital role of the patient is exemplified by the words we use about the patient’s engagement, compliance with our professional recommendations, concordance with the professional’s views, and adherence to a given plan. The meaning given to these terms may vary between professions.

Moreover, we still refer to shared decision-making. The NICE guidance on shared decision-making implies that the patient is the junior partner. For example. “You have the right to be involved in decisions with your healthcare professional.” and “This makes sure people have a good understanding of the benefits, harms and possible outcomes of different options.” Throughout, the professional is assumed to be in charge.

The new theory requires the patient to be the leading partner, asking for advice and assistance to achieve their goals. Of course, there is a significant imbalance because the professional has more knowledge and can refuse to offer or give the requested treatment. Nevertheless, the theory requires acceptance that the patient preferably controls the focus of attention and decides.

In practical terms, this paradigm shift has at least three interrelated consequences.

It supports a greater emphasis on teaching self-management in all aspects of the illness. I discussed the need to take a broad view of self-management on the page on predictions arising from the theory. The person should be taught skills such as goal setting, taking responsibility for learning or undertaking activities, and ensuring that professionals justify any recommendations.

As part of this, professionals and organisations must relinquish some of their control. They must reduce their paternalistic and protective attitudes, recognising that people “may make unwise decisions.” This is not to say healthcare professionals should always support the patient’s wish, but they must not overstate risks or harms when talking to the patient.

This, in turn, requires organisations, including commissioning organisations, to be more person-centred. Although most organisation proclaim their desire to be patient-centred, the management arrangement, protocols, and other rules are the antithesis of being person-centred. This has been excellently studied by Tiago Jesus et al. in a paper I summarised in a blog post.

In other words, the theory has significant implications for patients, professionals, and service providers; all will be challenged, though all outwardly support the need to prioritise the person’s views.

Summary.

All parties currently think and act using the dominant and pervasive biomedical model, which frames the patient as a passive recipient of professionally supervised treatment. The theory gives further strong reasons for healthcare to be person-centred and enable patients to control their adaptation, medical, and rehabilitation management as much as possible. This requires a paradigm shift in understanding rehabilitation by all parties: patients, their families, healthcare professionals, service managers, and commissioners.

Insight-2: the environment.

The person adapts to and within their environment. This means, sometimes, that skills learned in one setting, such as a hospital, do not readily transfer to another, usually their home. More importantly, most institutional healthcare environments are positively hostile to anyone with a disability and hinder even essential adaptations. For example, the architect may be pleased with providing an ‘accessible toilet’, but the patient may not be able to get there or even find it; the light may not go on or may go out while the patient is in it; the toilet may not be suitable for someone with visual impairments; and so on.

The pioneering experiments by Hubel and Wiesel illustrated the crucial impact of the environment, and more recent experiments have found increased synaptic plasticity and cognitive recovery in mice raised in a more stimulating environment after induced stroke. Several clinical studies have shown that improving the inpatient environment is associated with patient behaviours likely to improve outcomes. For example, one study implemented a Communication Enhanced Environment, and another planned and introduced a new trauma ward environment.

An appropriate physical environment that facilitates patient adaptation and maintenance of activities is an essential first step, but there is much more to the environment in any institutional setting. The culture must change from being risk-averse and rule-driven to one that allows patients the freedom to take reasonable risks, encourages patients to experiment and practice, and promotes the assistance of family members. The harm caused by hospital environments is well established; for example, function can deteriorate.

It is possible to undertake effective rehabilitation in an intensive care unit, so there is no reason for not doing so everywhere else. All residential environments should include enough space and suitable privacy to allow patients to wash and dress themselves, somewhere for patients to interact socially, and easy access to an area to get tea, coffee, and snacks.

Summary.

Because healthcare focuses on treatments given to patients, the environment is tailored to deliver treatment, but its influence on a patient’s well-being has been overlooked. The theory is centred on patient adaptation, and a person’s physical and social surroundings play a crucial part in maintaining unaffected activities and facilitating adaptation of other activities. Adaptation occurs constantly, not limited to a short session with healthcare professionals.

Insight-3: what is health?

This model suggests a definition of health appropriate for people with persistent disability. The World Health Organisation defines “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” This definition has two weaknesses: it is aspirational, few people will be considered healthy, and vague and ill-defined. What is complete well-being?

There are many definitions, which Norman Sartorius places in three categories:

The absence of any disease or impairment, a biomedical definition
Adequately managing all demands made by daily life, a functional definition
“A state of balance, an equilibrium that an individual has established within himself and between himself and his social and physical environment.” is an adaptive definition.

Many issues arise when considering whether someone is healthy. Any definition that references normality faces the challenge that normal itself is not easily defined. Georges Canguilhem established this about 80 years ago. There is no agreed standard of normal. One opposite of being healthy is being ill, and illness depends upon the person’s perspective. An alternative opposite is being sick, and sickness depends upon validation by Society. I have discussed the importance of this distinction in a blog post: disease, illness, sickness, and disability.

Many people seen in rehabilitation services have persistent disease, impairment, or limitations on activities and social participation; in some, their conditions start at birth or during early childhood. The question is whether someone with, for example, phocomelia from birth, traumatic loss of a foot at the age of 10 years, or a stroke when aged 45 years can ever be considered healthy. Many patients would say they are healthy, not ill.

A philosopher with a progressive lung condition, Havi Carel, believes someone can have a disabling condition’ and still be healthy. She explores this in two books, Illness and Phenomenology of Illness. In the first, she refers to “… the ability to adapt to new, more limited capacities and the creativity that emerges …”. She prefers the word adaptability to “… refer to the behavioural flexibility of ill or disabled people adjusting their behaviour in response to their condition.”

In her second book, she notes that many people with even quite severe limitations are as happy and report their sense of well-being at similar levels to people considered to be healthy. She says, “Rather, cultivating well-being within illness and learning to live well with physical and mental constraints requires effort and is an achievement …” She is alluding to the processes of goal adjustment and response shift, which I discussed when considering predictions from this theory.

Summary.

The General Theory of Rehabilitation suggests that a person is healthy when they have achieved a homeostatic balance between their various motivational needs and their ability to work towards their goals. Their subjective well-being will be stable within the same range as others in equilibrium.

Other insights

Two insights from predictions made by this theory were discussed on another page.

The focus on adaptation by the patient, rather than interventions by a service, explains the constant challenge of finding the service needed by a patient. No single service will ever meet all the rehabilitation needs of any patient. The only solution is to develop rehabilitation networks that (a) act as a directory of available services and what they can offer and (b) agree on structured procedures for inter-service collaboration. The need to alter the set points in the areas of motivational need was highlighted in the discussion of goal adjustment.

The rehabilitation literature has referred to neural plasticity as an important mechanism underlying rehabilitation. I will be discussing this on a separate page. The brain adapts to change naturally, involving learning and other behavioural changes. As one review said, “… neural plasticity, operationally defined as the ability of the central nervous system to adapt in response to changes in the environment or lesions.” Neural plasticity, a complicated phrase for learning as part of adaptation, will be discussed on a separate page.

Conclusion

This theory may prompt you to consider rehabilitation differently and should help you justify features of rehabilitation that are often not appreciated by others. Until the theory was published, there was no generally accepted theory of rehabilitation; indeed, disagreements about its definition arose from a lack of a theory. This could be considered a paradigm shift in Thomas Kuhn’s phrase, setting out a different conception of rehabilitation. It will not be the last theory. Thomas Kuhn’s analysis in The Structure of Scientific Revolutions proposes that promising paradigms resolve some puzzles and generate new ones that lead to further progress. I hope this theory follows this course.