2001 Conference Proceedings

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Generating Responses in Vegetative Children

H. Todd Eachus, Ed. D.
Advocate Schools
Grand Terrace, CA

Children who are diagnosed as being in a Persistent Vegetative State (PVS) are considered incapable of benefiting from any additional clinical treatment other than those necessary to maintain life. Attempts to evoke responses to environmental stimuli through occupational, physical or speech therapy are not made. PVS children are kept clean, warm and nourished. They are provided medications to reduce the risk of infection, prevent seizures, reduce respiratory problems and otherwise maintain the highest level of health possible. Ordinarily, few additional treatment services are offered.

The use of the PVS diagnosis has been the subject of discussion in the literature concerning accurate assessment and certain ethical considerations. Wilson and Thwaites (2000) have reported the use of an assessment tool in working with individuals in PVS. They were able to distinguish between those who emerged and who did not emerge from PVS on the basis of scores using the Sensory Modality Assessment and Rehabilitation Technique (SMART). In another study, an assessment methodology for use in studying response to instructions in minimally conscious patients has been reported by Whyte, DiPasquale and Vaccaro (1999).

The accuracy of assessment in treating minimally responsive patients goes beyond the technical aspects of the assessment. There is a lack of information about the effect of clinical setting, family involvement and instructional activities in the implementation of interventions with such patients (Piguet, King and Harrison; 1999). The diagnosis may be taken as an absolute thus providing no further consideration of treatment for the individual. McMillan and Herbert (2000) report the use of neuropsychological assessment findings in a case involving a minimally functioning patient. This patient was being considered for withdrawal of feeding. Evidence of communication and responsiveness resulted in withdrawal of a court petition to terminate feeding. The patient remained dependent six years post injury, but was talking and eating by mouth and showing insight into her condition. There may be a spectrum of conditions involved in PVS which should be periodically assessed. Without some periodic review, there is no likelihood that treatment services will be resumed.

This may present certain ethical issues as well. Cranford (1998) raises questions of ethical concerns with the PVS diagnosis such as PVS being ". . . the paradigmatic neurologic syndrome for decisions to discontinue treatment." McLean (1999) discusses ethical issues in the use of the PVS diagnosis. He expresses concern that the diagnosis may be inappropriately used to support end-of-life decisions that constitute non-voluntary euthanasia. Certainly efforts to evoke responsiveness in PVS patients are rare, if they occur at all.

Recently, an educational program for thirty-five children residing in a sub-acute care facility was structured to replace an earlier one. These children are victims of catastrophic illness or injury and some present with severe birth defects. Thirteen of these children had been diagnosed as PVS and are the focus of this paper. None of the thirteen was receiving any OT, PT or Speech clinical services at the time the program was begun. These children had been brought to the on-site classroom with their peers for up to six years prior to the start of the new educational program. The school staff working with these children had been stable for that time. Subjectively, the teacher and aides reported that "something was going on." They felt that they were able to distinguish mood changes in their students, that some of them responded to instructions and that they enjoyed such activities as hearing stories read or listening to music. However, monthly reviews by the attending neurologist and other physicians did not reveal any change in the status of these children.

In reviewing school and medical records on these children, several were noted to orient to light or sound, to grasp objects, blink their eyes, or turn their head. Some appeared able to operate switches with physical assistance. In developing the educational program, it was decided to assess each student to determine whether a switch of some kind could be used to generate a voluntary response to instructions from staff. In addition to a variety of switching devices, simple augmentative communication devices were made available. Since many of the students had no apparent ability to move their extremities, a device called Cyberlink was added to the array of assistive devices. This device enables a person to control a computer mouse through variations in EEG patterns in the frontal lobes.

The basic target of this work is to find the means to permit each child in the program to respond to events in the environment. Once that means is determined, then the student is guided toward greater independence in interacting with educational and leisure material.

Method

Subjects

The thirteen students in this study ranged in age from 3 to 20. Eight are female and 5 are male. Three of the children had been victims of near drowning. Three had been struck by a motor vehicle. Two others had experienced hypoxic encephalopathy. At least one was born with the congenital disorder of microcephalus and one was born hydrocephalic. Each of these thirteen children carries other secondary diagnoses. Several have no detectable vision and some have moderate to severe hearing impairments. None of the PVS children could take anything by mouth and many are ventilator dependent. All are on an extensive regimen of medications to preserve their health. Many of them sleep for extended periods of time and are often not alert during their scheduled classroom time. These children are particularly susceptible to respiratory infections. Each is easily fatigued.

Equipment

A switch assessment kit was provided to the teachers in the classroom. Appropriate mounting devices for switches were also made available. Simple augmentative communication devices such as 'Cheap Talk' were added as well. Three computer systems were placed in the classroom; two wall-mounted PCs and one laptop for bedside use. The wall-mounted units were equipped with touch screens for use by other students in the program. Each of the three computer systems had a Cyberlink device as well. A PC switch interface was added to the wall mounted units. This permitted each computer to be used with children of widely differing abilities.

A library of age appropriate, high interest software was purchased. The Cyberlink device includes a CD-ROM with training sequences in the form of simple video games. The collections of low vocabulary-high interest stories by Poe, Twain, London and Stevenson produced by Don Johnson were available as well. A phonics program was added to the library.

Procedures

The new educational program was initiated in July with seven instructional staff members. Three of the original teaching staff remained in the new program and were very familiar with the students. The subjective impressions that these staff members had formed over the years of what might serve as a response from each child became the starting point for determining what assistive device might be most functional. The assessment of children began by mounting a variety of switches and prompting their use to operate a cassette tape player. In each case, full physical guidance was needed. As physical assistance was decreased for a given switch, that device was used daily in the classroom and was sent to the students' bedside for use throughout the rest of the day and evening.

Due to the limited endurance of all the children served in the program, classroom sessions are limited to 45 minutes per day, five days per week. On days the children are unable to be transported to the classroom, instruction is done at bedside. Training trials began in mid-July following the assessment. Daily charting was done recording the degree to which each child required physical or verbal prompting in the use of a device. A simple eight-step scale was developed to indicate the degree of independence the student displayed in using a device. The scale ranged from 0-100%. Zero indicating no attempt and 100% indicating full independence without verbal or physical prompts. The intermediate steps are: 15%-physically guided through total task; 29%-physially guided through a portion or portions of the task; 43%-3 or more physical prompts; 57%-1 or 2 physical prompts; 71%-3 or more language or gesture prompts without physical prompts; 83%-1 or 2 language prompts without physical prompts. This scale enabled the staff to track progress over trials.

For those students with no motor control of their extremities, the Cyberlink or a head switch was tried. Head switches were mounted on the student's wheel chair and bed. The Cyberlink was used in the classroom only. The Cyberlink (Dellapena, 1998) consists of a headband that places three sensors over the frontalis. Training begins with calibrating the sensors to the student's basal muscle tension. The software provided with the device enables a computer mouse cursor to move through four directions and to click on and click off. The up-down function is trained by instructing the student to relax their forehead and then to raise their eyebrows. When this is done there is an immediate effect on the monitor. To move the cursor left-right, the student is instructed to look left or right. The click function is accomplished by opening and closing the mouth. Since the children studied were not capable of full range in any of these activities the calibration on the device permitted cursor response to very slight changes. The training sequences for these functions appear as video games in the form of mazes, pong, etc. Once some degree of reliable management of the computer cursor and click function had been established with the Cyberlink or a head switch, high-interest reading material was introduced along with simple concept-formation and phonic software. The amount of physical and verbal prompting needed by students each day was charted.

Results

Results are being presented in the form of individual case reports rather than as group data. Thirteen of the children in this program carried the PVS diagnosis at the start. Seven have made sufficient progress to have the attending neurologist remove that diagnosis. The data taken were estimates of the degree of independence shown by the student when attempting to use a particular switch or the Cyberlink during a class session. The scale ranges from zero to 100. The physical limitations of the students resulted in many absences from the classroom or days in which the student was sleepy from medication. Many of the children experienced frequent medical problems that prevent their attendance in the school program. Therefore, the data appear scattered in several of the graphs below. The progress these seven children have made is reported as follows:

Subject 1 is a 5-year-old girl who was diagnosed as PVS following a near drowning at age 16 months. In additional she has a seizure disorder, osteoporosis, asthma and cerebral palsy. She is ventilator dependent and is tube fed. Notes found in her chart at the time the new educational program began indicated that she orients to sound, makes eye contact and can operate a switch by hand. She also is able to turn her head. The initial switch assessment found that she was more adept at turning her head in response to an instruction than she was at pressing a switch by hand. A head switch was mounted on her wheelchair and later on her bed. The initial training sequence for this child began with operating the switch to turn on a tape cassette player to listen to music. Later in training, she operated the head switch to choose between two objects presented on a computer monitor to follow an instruction such as "Which is big?" This child has been able to demonstrate increased consistency in using the head switch to operate a tape player and to make choices between items displayed on a computer monitor. She has used the switch at bedside to play music as well.

Subject 2 is a 20-year-old young man who was diagnosed as PVS at 21 months following a near drowning. He is also diagnosed with cerebral palsy, seizure disorder, osteoporosis and has a history of reactive airway disease. He has a tracheostomy and gastrostomy. He responds to light, uses his right arm, turns his head, shakes hands, enjoys music and can use a switch.

Following a switch assessment he was provided with a Big Red Switch mounted to his wheelchair. The switch was also made available at his bedside. He has demonstrated a good degree of independence in using the switch to play music or to listen to stories on tape.

Subject 3 is a 12-year-old girl who was struck by an automobile at age 7. She suffered a traumatic brain injury, cerebral palsy, spastic quadriplegia and scoliosis. She was diagnosed as PVS. She has a tracheostomy and gastrostomy. Her chart notes that she tracks visually, uses eye-blink to indicate yes/no and that she can use switches with physical prompting. This child was provided with a Cyberlink device to control a computer mouse. She has been successful in acquiring skill in manipulating a cursor on a computer monitor. The data shown from the summer months were the result of training sequences. The data from September, October and November were taken as she was using the Cyberlink to operate software with short stories and to develop concepts of similarities and opposites. The degree of independence demonstrated during this work was less than during the training sequences. This may be due to the increased difficulty of the material.

Subject 4 is a 17-year-old young man who was struck by an automobile at age 16. He suffered cardiac arrest, severe encephalopathy, seizure disorder, anoxia and has experienced recurrent pneumonia. Chart notes indicate that he is able to turn his head slightly and has vision and hearing within normal limits. He is tube fed and ventilator dependent. He watches sports events on television and enjoys listening to music. He began using the Cyberlink in mid September and was only partially successful. His disabilities made it necessary to work with him at his bedside, many times with family members present. The instructional staff noted that this student performed better on those days that the family was not present. A head switch is being tried now to see if he provides a more consistent response to it than to the Cyberlink. This subject will soon be discharged to a residential setting near his family home in northern California. The devices and curriculum materials that have proven useful in working with him will be sent to his new placement.

Subject 5 is a 13 year old girl diagnosed microcephalic at birth. She carries the PVS diagnosis as well as anoxic encephalopathy, seizure disorder and spastic quadriparesis. She has a tracheostomy and gastrostomy. She uses her right arm, will hold hands, and uses a switch to play music and stories. A Big Red Switch and a tape player have been most effective in generating a reliable response from this student. She requires occasional physical prompting with the switch, but has been consistent in using it over the past three months.

Subject 6 is a seven-year-old boy who suffered anoxic encephalopathy, cerebral palsy, epilepsy and spastic quadriparesis and is diagnosed as PVS. He is tube fed and has a tracheostomy. He does not track light or sound. He also has experienced several medical problems during the Fall and has not been attending class consistently as a result. However, he has been fully independent in using a switch to operate a tape player during the last half of October.

Subject 7 is a four-year-old girl who was victim of a near drowning at 8 months. This left her PVS with cerebral palsy, spastic quadriplegia and a seizure disorder. She turns her head and is facially expressive and can hold objects. She has been only infrequently able to use any assistive technology due to medical problems. However, on those occasions when she has been well and alert in the classroom, she has made substantial progress and has been fully independent during October and November.

These students continue to make progress in independent use of various switches and with the Cyberlink. The remaining five children who are PVS continue to participate in the program and are re evaluated monthly by the neurologist. Their progress has not been as rapid as the other seven children, but there are indications that they are becoming more responsive.

Discussion

The setting in which PVS children are served is primarily concerned with maintaining their health. The day-to-day medical status of these children many times limits their access to educational resources. Gains in skill occur slowly and in small increments. The remarkable thing is that progress is made. In the present study, seven of 13 students have been able to produce responses in interaction with their environment. The remaining five continue to receive services from the educational program and attempts to identify an effective assistive device continue to be made.

The early progress with PVS children in this program suggests that the diagnosis should not serve to limit services to them. Exploration of suitable assistive technology for such children may provide the means for them to respond to their environment and gain skills in operating devices, making their needs known and in acquiring new concepts. Staff members who work with such children over long periods can provide information that may suggest ways in which the child may benefit from certain forms of assistive technology. A very long view of what constitutes assessment is needed in such cases.

REFERENCES

Cranford, R. E. The vegetative and minimally conscious states: ethical implications. Geriatrics, 1998 Sep, 53 suppl 1:, S70-3.

Dellapena, D. Mind over matter. PT – OT – SPEECH TODAY. 1998, Jun

McLean, S. A. Legal and ethical aspects of the vegetative state. J Clin Pathol. 1999 Jul, 52:7 490-3.

McMillan, T. M. and Herbert, C. M. Neurophychological assessment of a potential "euthanasia" case; a 5 year follow up. Brain Inj. 2000 Feb, 14:2, 197-203.

Piguet, O., King, A. C., and Harrison, D. P. Assessment of minimally responsive patients: clinical difficulties of single-case design. Brain Inj. 1999 )ct, 13:10, 829-37.

Whyte, J., DiPasquale, M. C., and Vaccaro, M. Assessment of command-following in minimally conscious brain injured patients. Arch Phys Med Rehabil, 1999, Jun, 80:6, 653-60.

Wilson, S. L., Gill Thwaites, H. Early indication of emergence from vegetative state derived from assessments with the SMART-A preliminary report. Brain Inj. 2000 Apr, 14:4, 319-31.


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