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Locked‐in syndrome is a severe neurological condition characterised by total or near total paralysis of motor function with preservation of vertical eye movements. Quadriplegia, lower cranial nerve paralysis and mutism are particular features of this neurological state.1 In contrast with other neurological disorders such as akinetic mutism, coma or vegetative state, consciousness in locked‐in syndrome remains intact, as do intellectual and linguistic abilities and emotional functions.2,3 However, communication capabilities are severely limited because the motor abilities required for self‐expression are lost.
The study of psychological adjustment to this extreme condition provides the potential for insights of wider psychological and philosophical interest as well as for important clinical implications not only for patients with locked‐in syndrome but also for others with extreme disabilities.
The patient described here suffers from chronic locked‐in syndrome following a brainstem stroke 4 years ago. He has found an outlet for his thoughts and feelings through his poetry. These poems provide the opportunity for this study.
PK was born in Poland in 1956. He obtained his art qualifications in Poland where he worked as a satirical cartoonist. He obtained several awards for his drawings which were exhibited internationally and also won the National Award for Poetry in Poland.
On the 1 April 2001, PK suffered a brainstem stroke. After a few months, PK was able to make consistent upward movement of his eyes sufficient to establish effective communication by means of an alphabet board. PK expressed a wish to be able to dictate poetry through this medium.
The 36 poems written by PK were analysed as a source of qualitative data using Glasser and Strauss's version of grounded theory.4 A process of coding was carried out which involved labelling concepts from the text that were potentially relevant to the problem being studied. As coding of the sentences proceeded, eventually the concepts recurred in subsequent pieces of data (poems).
Concepts were then grouped under more abstract, higher order concepts described as “categories”. A category referred to a problem, an issue or an event that was defined as being significant to the participant.
Two independent raters were involved in establishing the categories. There was 100% agreement when establishing the main themes. Minor differences were noted when referring to the subcategories.
Our identification of categories from the data has culminated in establishing 12 main themes. These are: (1) women; (2) love and beauty; (3) humour; (4) optimistic/positive thinking; (5) memories; (6) disability/discomfort; (7) unpredictability of life's events; (8) death and finality; (9) religion; (10) rich and poor; (11) politics and history; (12) advice giving.
These categories were then grouped into three higher order themes. These were: (1) hopeful themes (women, love and beauty, humour, optimistic thinking, memories):
“You return week upon week with no pain of which to speak
A carbon copy of carefree spring
The sunny summer feelings that you bring
A clearing full of flowers
Lost in a forest of emerald green towers
A burst of joy for Christmas time
A mindful eye for harder rhyme”
(2) helpless themes (disability/discomfort, unpredictability of life's events, death and finality):
“It doesn't feel great on my own… gloomy boring sad… there's nobody to slap on the face or nobody to get slapped from”
(3) observant themes (religion, rich and poor, politics/history, advice giving, existential questions/reflections):
“And two and two that adds to four
Is sometimes less and often more”
The themes were also divided according to their range of applicability (eg, widespread general themes were referred to as “philosophical”). Themes that reflect on personal memories, present condition and personal enjoyment were designated as “personal” themes.
Locked‐in syndrome represents an extreme form of imprisonment. The individual is not merely locked‐in a prison cell but within their own body. On reading PK's poems it becomes clear that his emotional and spiritual existence is similar to that of any able‐bodied person, covering the full range of experience. There are moments of lightness, of humour, thoughts of women and his family, with bleaker moments represented too. Despite the extremity of his condition he has realistic goals for his future and believes in himself and his abilities.
It is clear PK loves life and wants to live. He makes every effort to be happy in his imprisoned existence. A former agnostic, he now acknowledges the existence of God, who gives him strength and the will to live.
For PK, being able to create and engage in his artistic endeavours is a motivating factor and a coping strategy. His 3 year creative heritage of outstanding poetry since the material incident has been acknowledged in numerous national poetry competitions.
Locked‐in syndrome represents a condition where the body can no longer be “used” to act in a wilful manner. Yet in this condition cognitive processes still function and hence the person lives in their consciousness, as we all do, but is unable or less able to influence their external environment.
It is vital that all staff caring for someone with locked‐in syndrome, from cleaner to consultant, are aware of the full and vital inner life that continues in the apparently inert body. While the person with locked‐in syndrome can only exert choice independently in their own thoughts, they can also exert choice if others are available and prepared to act on the external environment for them. The important issue here is one of diagnosis, differentiating between those in locked‐in syndrome and those where awareness and cognition are also affected. Recent studies suggest that, on average, diagnosis takes 2.5 months and in some cases it has taken 4–6 years.5
These clinical issues are not without cost implications. Communication is a slow, one‐to‐one process. Yet this is the only way in which such patients can be (partially) freed from their imprisonment.
The importance of providing opportunities for those with locked‐in syndrome to communicate and hence articulate and elaborate their cognitive adaptation to their condition may seem obvious but can be easily overlooked, because of the precedence staff may give to physical care and because it is so difficult and requires much patience and time. However, not to enable the patient to communicate is analogous to keeping someone in solitary confinement and passing their food under the door.
The authors are extremely grateful to PK for his willingness to participate in this research. They also wish to acknowledge the support given by the Royal Hospital for Neurodisability, the Neurodisability Research Trust and the Disabilities Trust/Brain Injury Rehabilitation Trust.
Competing interests: None.