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Minimal Cues and Fragmentary Behaviors. An Introduction to Process-oriented Coma Work Methods in Persistent Vegetative States and Coma.

by Pierre Morin

From my work as a head of a brain injury department in one of Switzerland's leading rehabilitation clinic I am aware that treating people in persistent vegetative states is complex and some times frustrating with often only very small progress. There are much more questions than answers and like most health professionals I am also tapping in darkness. Furthermore, the rehabilitation of such patients requires teamwork and the concerted effort of many specialist. Coma work has many facets but most important to me is that it reflects a feeling attitude that sees people in coma or PVS not only as unconscious or vegetating bodies but as sentient beings with potentially meaningful inner experiences. I understand the hopelessness that many family members and professional feel. There is no magic cure but maybe a way to better connect with the states that people are in and better understand the processes they go through.

From a western mainstream medical perspective consciousness and/or awareness of self and environment is supposed to depend on intact integrative neural connections between modular brain networks. These modules are relevant within the associative cortex and between the associative cortex and other brain areas like the reticular formation for attention, the thalamus for synchronization, the hippocampus for cognitive memory, and the amygdala for emotional memory. These modular networks synchronize their state of excitement and form coherent meaning units which can change in very short intervals.

Historically medical approaches to coma or consciousness are based on a deficit model; judgments about someone’s consciousness or awareness are inferred from empirical neurological experience from stroke or other brain injury victims. Focal patho-anatomical brain lesions are associated with losses of sensory perception and behavior. Current clinical assessment tools for coma or consciousness are based on a persons rational expressive behaviors. Behavioral deficits lead to the assumption of consciousness deficits. If a patient shows no evidence of inter-personal contact or awareness of self or environment, which is assessed by his or her ability to follow commands, track objects, communicate verbally or with gestures or respond with some other patterns, he or she is supposed to be in a coma or persistent vegetative state. Observed isolated features like tears, grimaces, vocalizations, and fragmentary movements are interpreted as stemming from lower level brain regions without any purposeful content or intent.

From the outside we interpret consciousness on the basis of what we perceive as rational/consensual expressive behavior. With consensual I mean that we have a consensus about what we perceive as meaningful communication. For example we expect an adult to talk in a certain way, to be oriented about everyday and personal life events, and to be able to meta-communicate about her inner experience and behave appropriately. If that is not the case we often diagnose the person with some sort of pathology. We say she has Alzheimer or a psychosis or is in a coma or a persistent vegetative state.

If there is no expressive or patterned response to stimuli we are likely to think the person is unconscious, non-responsive, and has no meaningful inner experience. People who cannot control their behavior are thought of having different inner experiences than people who respond/behave in a consensual and rational way. In the extreme forms of non-responsiveness like coma or persistent vegetative states we are likely to deny patients any form of inner meaningful experience or cognitive ability.

New research (see further reading list on your handout) with functional brain scanners (fMRI and PET) and event related brain potentials (EEG waves time-locked to particular events) now show that some people in PVS or coma are able to perceive and process various aspects of their environment despite their inability to express or communicate in a meaningful way with their environment. This is very exciting and revolutionizes the concept of persistent vegetative state.

One researcher concludes that it is already clear that higher cortical functions are present in many patients who cannot express their abilities in their behavior. Thus, the identification of consciousness with rational expressive behavior does not hold any longer. Other researchers correlate the remaining residual metabolic brain activity to the observed fragments of behavior. How far these isolated remnants of functional brain networks equate with actual consciousness continues to be unknown and debated. Nevertheless, in many patients that were previously diagnosed with PVS there is at least the possibility for fragments or islands of consciousness. Even if we from the outside don’t understand them and even if consciousness isn’t expressed through intelligible behavior.

We need to reevaluate the way we define consciousness and treat patients in vegetative states. Clinical assessment scales based on expressive behavior like the Glasgow Coma Scale are misleading and misrepresent the patients state of inner experience or cognitive functioning. The usual way we interpret someone’s consciousness is through relatively gross expressive signals. We overlook minimal cues because we don’t know how to interpret them. Now in people who are withdrawn, comatose or in altered states of consciousness these consensual based overt communication signals are less helpful in establishing a rapport. We have to find a different doorway into the person’s inner experience.

Coma work is uniquely qualified for assisting people in coma and offering tools to establish some communication with a person in an altered state of consciousness or with only remaining fragments of consciousness. Coma work provides the methodology that allows to promote the cognitive abilities that are still present and support the healing process. Using minimal cues and behavioral fragments we are able to unfold and expand the range of meaningful behavior.

Following are some possible minimal cues and behavioral fragments you can interact with while treating a person in a vegetative state.

Table 1. Minimal cues as doorways to communicating with people in coma.

Respiratory rate: is it erratic or regular, labored or light, deep or shallow. Breathe with the person, in the same rhythm and pace. Talk to her following her pace.
Eye movements, twitches, flickers. Use subtle touch to amplify the sensory perception of these cues.
Skin changes in color and moisture. Notice them, speak to them, and use them as doors into the unknown.
Body language, posture, movements of limbs, and muscle tension. Use body-work techniques to unfold the inherent meanings.
Vocalizations, coughs, sneezes, unidentifiable noises, unintelligible speech. Add your own sounds and tones and follow the patients feedback.
Atmospheres, moods, your own reactions and feelings. Take them seriously with openness and curiosity. They might give you significant leads into the patients process.
This work takes time when you start doing it, you need time to feel yourself into the state, pace the person’s breathing etc.. After a while it becomes a second language, more natural and can be used in any little interactions.

From our work with people with long term health problems we understand illness as a deeper and meaningful process beyond everyday reality. The wisdom embedded in body sensations and symptoms speaks to a mythical, spiritual or soul reality which complements and expands our everyday experience. A medical or spiritual crisis often requires us to reevaluate our lives and search for meaning in a different way. Serious illness is, at times, a chance to reconnect us with a spiritual or larger dreaming process. To readjust to everyday life might then be difficult unless you stay connected with these deeper dimensions of life. Based on this experience we developed methods of working with the patients internal resistance to actively participate in his or her own healing process. By exploring and joining the deeper meanings of the altered or withdrawn states we are able to affiliate with the clients own interest in healing and growth and gain his or her compliance.

Table 2: Three levels of consciousness

Consensus Reality includes a biophysical allopathic view and treatment of the body, but also regular nursing practices, like making someone comfortable, rehabilitative and palliative care, issues that need to be taken care of in regard to someone dying or being placed in a hospice, living will, advanced directives etc..
The Dreaming Level is our term for the realm of subjective experiences, including unintentional processes in our bodies, dreams and images that accompany us throughout our lives, emotions and reactions we have to people and the atmospheres we sense around them. In coma or persistent vegetative state they manifest through minimal cues, behavioral fragments and unintelligible utterances
The Sentient Level is the realm of the non dualistic experiences of the life force. Observer and observed, patient and caretaker are being seen as one unit. As an observer it refers to a state in which you feel your way into the person’s altered states. It reflects an experience in which you have the sense of joining the comatose person in her world, rather than feeling like an outsider.

People in persistent vegetative states live outside of our consensus reality world (see Table 2). Their movements and vocalizations are incomprehensible from a consensual perspective; but they can be very meaningful if addressed from a dreaming and or sentient. Once they slowly recover they often stay for longer periods in altered states of consciousness or confused, withdrawn states that are closer to a dreamlike realm; they speak in metaphorical analogies without meta-communicating about them. Joining them into their experiential world, following, interacting with their signals and non-consensual expressions is the door to discovering the possible meaning. There is a deeply ethical dimension to that kind of approach. If you continue to relate to a person in such a state only from a consensual level, you in some ways deny their experience, you marginalize the person and her experience, you contribute to their isolation. An approach based on a different set of signals (minimal cues) is more appropriate and allows us to join the person in her state or inner experience.

In empirically differentiating between three levels of experience we provide the base for an integrative treatment for patients in persistent vegetative states (see Table 2). We think that all levels are important and can be addressed simultaneously or alternately. For example if you need to take care of some rehabilitative need (e.g. as a PT if you have to apply a redressing cast to prevent further contractures) you can speak and stand for the medical intervention and simultaneously remain aware of the minimal cues and behavioral fragments, relate to them and use them for feedback. At times I have made the experience that after I had briefly interacted with a patients spastic posture and limb movements the muscle tension decreased and a certain intervention like the one mentioned above became easier to perform. If we train our awareness to enter dreamlike states, follow subtle body feelings and notice minimal cues while appreciating the everyday medical world we can understand the consensus reality dimensions of a symptom like coma and remain open to other non consensual realities too. The energy in a tense muscle is a limiting process that needs to be treated for rehabilitative reasons and the expression of a innate power that may need recognition, some guidance and direction.

Pierre Morin MD, Ph.D.