12 Intensive-Care Unit for Vegetative State: Management Guidelines
This chapter aims to present various modalities, parameters, references, and suggestions which in clinical experience have proved helpful and often indispensable for the correct management of a department dedicated to treating patients in the vegetative state. Apart from the directives and detailed obligations that are typical of each country’s medical legislation, the setting up of a department of this type should be guided by specific indicative criteria that affect both the structural project and the functional organization – two intertwined and correlated aspects.
General Organizing Criteria
In medical practice and culture, a clear need has emerged that the complex welfare problems of patients in the vegetative state be approached by assigning the patients to qualified teams and including them in specialized programs, characterized by: identification of the prevalent organic pathology; definition of progressive stages; and overall coordination of interventions, starting from the acute state and continuing up until social reintegration.
In this type of department, the process of rehabilitation is given its real status as a holistic approach, ensuring all the diagnostic and therapeutic procedures that are indispensable to guarantee full recovery. Rehabilitation therapy is not carried out in a simplistic way; instead, global care is taken of the person in relation to his or her whole pathological condition, not only by defining and treating the basic illness, but also by avoiding and/or treating complications or associated disorders.
Neurorehabilitation could be described as the end point of a series of complex operations, among which physiochinesy therapy (FKT) is one therapeutic step in the context of the broader and more modern concept of “restorative” medicine, the highest level of health care designed to guarantee the best possible outcome.
Residual disability is often due to primary damage as well as to chains of events that take place after the acute state, ranging from lack of prevention and/or care for resulting impairments, to complications caused by lack of adequate management of patients in a frail condition, for whom immobility itself often produces irreparable clinical disasters.
Prevention, diagnosis, and treatment, integrated into multidisciplinary activities, must be thought of as different steps in a single operation, namely neurorehabilitation; the latter should therefore address everything that precedes, accompanies, and follows the frequent and prevalent phenomenon of severe head trauma.
Clinical departments for patients in the vegetative state were originally regarded as a combination of intensive care and neurosurgical acute-phase treatment in the rehabilitation period (as traditionally considered). The department is highly specialized and provides high-level assistance; it should either be located near a large multidisciplinary hospital or form part of the hospital itself, although distinct from the other operating units. This type of department, the intensive-care unit for patients in the vegetative state, is designed to provide selective care for patients with complex internal medicine problems and severe consciousness alterations. Patients are admitted immediately after they have opened their eyes and have achieved stable respiratory function.
Arousal without (clinical) signs of consciousness, the presence of a tracheostomy cannula, long-term artificial feeding through a gastrostomy, dysautonomia, septic conditions, absence of spontaneous motility problems due to immobility, often complicated in important cranial traumas by various kinds of fractures, a potential for neurologic complications, total inability with regard to all personal needs-all of these situations, as well as others, approximately describe the critical clinical situation that makes these patients almost totally dependent on others and easily prone to complications (especially septic ones).
The clinical management of a patient in the vegetative state is very hard work, and specific departments must guarantee integrated and coherent management. Any activity must follow flowcharts, consistently fulfilling the following fundamental goals:
• Support for vital functions and maintenance of stable systemic conditions
• Support/maintenance of residual organic resources
• Reactivation of autonomous functions
• Help in regaining damaged functions
Standardization of all medical care provided, through the use of periodically revised flow-charts, is necessary to achieve these goals.
The whole management at this stage is guaranteed by a team in which each professional, while maintaining his or her own specific competence, collaborates in identifying personalized models that may suit each specific patient, avoiding the adoption of fixed roles, being well aware that the way in which each action is performed can actually elicit or inhibit a patient’s reaction. A complex form of interaction is therefore needed: it is necessary for the whole team to treat patients in order to facilitate the recovery of consciousness, but at the same time, it is also necessary to stimulate environmental contact through multimodal stimulations during everyday care activity.
During the arousal phase after coma, the patient does not seem to perceive external stimuli; it is only at a certain point the during clinical course that this perception appears in a global protopathic modality, without intermediate or discriminating “nuances.”
Since the patient is in a state of complete perceptual isolation, the facilitation/promotion of physical experience should be the common feature in all aspects of intervention. Physical experience is the only possibility of “being” – “esse est percipi” (G. Berkeley, Treatise on the Principles of Human Knowledge). It is through our own body perception that all new experiences take place and that we build up a consciousness of “self.”
It must be borne in mind that mistakes in the early phase may produce irreversible impairments and may be the main reason for therapeutic failure in patients affected by significant difficulties and a slow tendency toward improvement. A combined form of management, with a concentric view of the patient as representing the cornerstone around which different professional figures work to provide global, polymorphic support, appears to be the best type of assistance, targeted at the best possible outcome.
In this team, beyond the boundaries of different medical specialisms, professional nurses and rehabilitation therapists acquire fundamental roles, contributing both to the diagnostic definition and to monitoring of the clinical course. New professional profiles therefore take shape: while dropping traditional roles, staff acquire increasing autonomy, with the new operating model being characterized by team activity and a multidisciplinary approach. From time to time, this multidisciplinary operating model should set achievable objectives for each patient, at each specific moment.
The criteria for admission and discharge of patients in an ICU for the vegetative state can be summarized here. The ICU’s mission starts when the patient opens his or her eyes and achieves stable respiratory function; it ends as soon as the patient begins interrelating with the outside world. The patient must therefore not be in coma and must have had autonomous and stable respiratory functions and well-functioning vital organs for at least one week. Imminent surgery, or conditions demanding highly specialized clinical treatment such as dialysis or severe hepatorenal failure, or hematological illnesses such as diffuse intravascular coagulation, etc., must not be present.
Discharge generally involves transferring the patient to an intensive neurorehabilitation department to ensure the best possible recovery of motor and neuropsychological sequences, or to a long-term medical department in which basic assistance and maintenance of regained functions is guaranteed.
The patient is ready to be transferred to a new department when, after a mainly reactive phase characterized by reflex motoricity and altered perception, he or she reaches a more selective perception phase and finally a level of motor performance that allows intentional behavior and interacting with the surrounding environment. A patient presenting simple but constant answers, even if restricted to single expression modalities, and with good and stable vital functions must be immediately transferred to a neurorehabilitation department to continue rehabilitation programs with a view to recovering the contents of consciousness and all other damaged functions.
We believe that a patient in post-traumatic vegetative state must receive intensive rehabilitation treatment in an ICU at least for 1 year after the traumatic event. When an evaluation by the whole rehabilitation team shows that the patient has not presented any changes in conscious functions over the last 3 months, the conclusion can be drawn that that patient’s potential for recovery is limited. He or she should therefore continue rehabilitation therapy and maintenance support of general conditions in a long-term specialized unit. This decision must be supported by additional preparation and care. A detailed clinical evaluation is written up in the patient’s hospital file by the department team and is communicated to the family in advance.
Recovery of conscious activity may become evident even after 1 year or even later, but the longer it takes, the worse the prognosis for recovery is, and the patient often remains in a minimally responsive state (see p. 110).
Direct discharge from hospital to the home for a patient who has not shown a good recovery is a rare occurrence; it would be an extremely difficult situation. The patient’s family (especially parents) should have adequate social and economic resources and an adequate and preventive practical and psychological training.
The functional organization of the facilities described above is the basis for defining the process the patient should follow from the vegetative state to recovery of contact and relationship with environment and people.
The structural equipment and instruments used depend on the kind of patient being treated and his or her clinical condition and potential outcome. Building structures, equipment, and removal of architectural barriers have to follow the legal standards that apply in each country.
The number of beds must be calculated in proportion to those in the intensive-care unit and intensive standard neurorehabilitation unit and long-stay unit, maintaining a ratio of 1 : 4.
The organizational arrangements should make it possible to follow a complete rehabilitation program, thereby achieving the best recovery results and ensuring patient turnover and rapid fulfillment of admission demands. In relation to the cost-benefit ratio and experience in existing units, the ideal number would appear to be not less than eight or more than 16.
As an indication of potential equipment needs, a 10-bed unit can be expected to require:
• A surface area of approximately 500 m2, subdivided as follows:
– One or two rooms for in-patients, 150 m2
– One or two single rooms, 40 m2
– Water therapy area, 50 m2
– Gymnasium, 90 m2
– Two rooms for special treatment, 30 m2
– One prothesis workshop, 10 m2
– Medical and nursing working areas, 30 m2
– Dirty and clean depots, 40 m2
– Common areas, 40 m2
– Service area (kitchen, etc.), 20 m2
• Specific equipment for each area listed
• Biotechnology facilities
• Human resources
• Specialist competence and reference diagnostic services
It is necessary to provide an access area where the whole staff can dress up and change clothes at the beginning and at the end of each shift. An electronic checking system at the entrance may be useful. Admittance to the unit is through a filter area in which all staff members, relatives, and any other occasional visitors (consultants or maintenance staff) must ensure a “clean” approach to patients (by wearing uniforms, covering shoes, washing hands, etc.).
The structure must have numerous, user-friendly washbasins.
The residential area must be organized into one or two large areas, and the beds should be located around the perimeter, with a central observation nursing area, in order to maintain direct visual monitoring of each patient, not only using electronic supports (these patients are not able to use any alarm systems properly).
The area for each bed must be calculated so as to ensure easy access from both sides with wheelchairs, lifters, or any other equipment. Each bed must be easily transferable, and each single bed place must be thought of as an independent functional unit, with points for electricity, oxygen, and compressed air, etc. Shelves for monitors, leaning surfaces, nourishment or infusion pumps and various rods must be fixed to the wall or ceiling, using supports that leave the beds free from any anchorage. The patient must be easily transferable on the bed or wheelchair. Beds should preferably work electrically, with blocking devices, and must be capable of verticalizing up to 90°. Latex antidecubitus mattresses must be supported by more complex ones, with computerized air flow.
Electronic monitoring equipment for each single patient’s vital functions must be capable of transferring video and numerical data via monitors to an observation and control station. All vital parameters must be retroactively transferable to files. Alarm systems should be constructed in such a way that in each room in the department, a very distinct light signal will show that one of the monitors in the unit is signaling an alarm.
The walls between in-patient areas and common areas must be made of glass.
Single bedrooms are necessary when the patient’s clinical condition requires the presence of a relative (in critical situations) or for special infections (for isolation). They are also useful when the patient has regained the contents of consciousness and there is a delay in the transfer process for various reasons. Some centers use single bedrooms to teach relatives about nursing maneuvers and patient management, if a domestic transfer has been planned. Single bedrooms need to have an area large enough to allow the entrance of any kind of equipment that needs to be placed around the bed, which should be easily transferable. Single bedrooms must have a bathroom with shower and a large pool for hydrotherapy, water mobilization, and post-relaxation stimulation.
The hygiene facilities must be regarded as therapeutic areas, and must be subdivided into compartments along one pathway:
• Washbasin area with a mirror wall
• Shower area with a walled WC
• Butterfly pool area
Bathrooms require ultraviolet light for sterilizing the room; they also need a door with a safety device allowing the ultraviolet light to be turned on only when nobody is in.
There should be a doctors’ room, with an adjacent visiting room. The infirmary is designed only as a ward sister’s organizing room and as a depot for drug and therapeutic preparations. There should also be a staff meeting room.
The gymnasium is one large room dedicated to multifunctional activity, with one mirror wall. It should be large enough to contain 10 patients at the same time, making it possible to carry out different activities simultaneously, such as standing and lying exercises, wheelchair positioning, rolling, and individual deambulator exercises, etc. The following should be provided for inside the gymnasium:
• Occupational therapy area and thermoplastics
• Instrumental therapy area with suitable equipment (for physical therapy, analgesic currents)
• Prosthesis workshop adjacent to the gymnasium
There should be two rooms for individual therapy, sensory stimulating treatment, swallowing and breathing exercises, and cognitive therapy.
Finally, there should be a very spacious and comfortable room for relatives (at least 20 for 10 patients), with refreshments available (including a food dispenser).
There should be an air-conditioned room for hydrotherapy in the butterfly pool.
In addition to the specific rooms described above, it is necessary to organize:
• A clean linen depot
• A dirty linen depot
• A wheelchair depot
• A kitchen for food preparation
• A rubbish drop-off room
• Principal access
• Emergency exit (suitable for this type of patient)
The distribution of rooms should follow an ideal pathway from clean to dirty.
The floor, walls and ceilings must be made of fire-resistant material that easily allows cleaning and disinfection, avoiding inaccessible corners and surfaces. Colors, for example in frames and furnishings, should preferably be pastels or shades that create a pleasant and peaceful atmosphere, avoiding the cold or very medical appearance typical of intensive-care units. The room should be bright in natural daylight but not directly exposed to sunshine.
Equipment and Biotechnology
There should be an air-conditioning system to guarantee thermal stability (21 °C in winter, 24 °C in summer) with a humidification gradient of more or less 65 %, with eight exchanges of sterile air, filtered with eight changes per hour. It is important maintain a slight overpressure in the department to prevent the entry of untreated air or dust.
There should be a ceiling-track lifting system, arranged in different rooms and in the in-patient bedrooms, common areas, gymnasium, and swimming-pool (this reduces work and ensures easy and safe movement of patients). Other items of equipment include:
• Computer system
• Monitor controlling system
• Sound diffusion system
• Eight pulsed oximeters
• Two electrocardiography (ECG) machines
• One defibrillator
• One sterilizer
• One blood gas analyzer for measuring electrolytes and glycemia
• One flexible fibrobronchoscope
• Ten pumps for enteral feeding
• One portable oxygen respirator
• One movable radiography device
• One emergency intubation and tracheostomy trolley
• Centralized vacuum and oxygen installation
Some of the instruments mentioned above are needed to ensure that the unit can function autonomously in emergency situations.
• Multi-articulated tilting beds that can be verticalized up to 90°
• Antidecubitus mattresses
• Bed head with centralized O2 and vacuum equipment, calling system, and lights
• Container modulus for each patient, with various shelves for clean linen, hygienic material, outdoor clothes
• Small and easily sterilizable basket or container next to the bed, in which small prosthetic materials or positioning supporters can be placed; must be individual
• Working shelves
• A U module equipped for nursing observation
• Special wheelchairs
• Ten slings to lift patients
• Two elevators
• Two patient weighing systems
• Two shower stretchers
• One spoon stretcher, one weighing system
• One emergency trolley aspirator
• Three bed-pan washing machines
• Mirror wall 8 m long
• Three double wall bars
• Carpets of different sizes to cover a total area of 20 m2
• Two tatami mats
• Two standing devices
• One parallel bar
• Two shaped tables of different sizes for occupational therapy
• Two adjustable stools
• One pool for thermoplastic material
• Teaching materials for occupational therapy
• One electrostimulation device
• Shaped modules of different sizes
• Two kinetic lower limbs
• Two kinetic upper limbs
• Washbasins fitted for handicapped people, at variable heights, fixed to a single mirror wall
• Butterfly pool
• Material container
• Adequate containers for hydrotherapy
• Two shower stretchers
• Various models of sling
For ten beds, it is necessary to provide:
• Four doctors on internal attendance duty service
• Five therapists
• A sufficient number of nurses and auxiliary staff, excluding cleaning staff, to ensure 10 hours’ assistance out of the 24 h for each patient
In view of the complexity of the treatments, the medical staff must have a stable nucleus of doctors on the permanent staff, who may have differing basic areas of expertise, such as internal medicine, resuscitation, neurology, neurosurgery, or physiatrics, but who should also have acquired special experience in this field.
Medical assistance necessarily has to be integrated, with constant collaboration among doctors belonging to different specialized fields, both in surgery and internal medicine. We believe it is important to emphasize again that when a coma ICU department is set up, it should either form part of, or be situated nearby, a specialized multidisciplinary general medical center.
Nurses, physiotherapists, and auxiliary staff must have acquired or should be acquiring specific experience through training courses, refresher courses, and continuous training work, and support for participation in training schemes should be provided by the specialists managing the department.
The specific psychological aspects of the work and the nature of the medical and social relationships involved make it valuable to have a psychologist and social assistants as part of the unit’s basic staff.
Twice-weekly meetings are a crucial part of any personnel training program. All staff members should take part in these, and the aim of the meetings is to develop a common professional awareness through continuous assessment of both clinical problems and the inevitable ongoing revisions of working strategies. The group meetings also make it possible to develop a supportive and collaborative working approach through which, with the predominant group dynamics involved, staff can learn to manage and control any individual disruptive dynamics.