Ventilator-Assisted Living©

Summer 2002, Vol. 16, No. 2

ISSN 1066-534X

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Read selected articles from this issue ...

Long-term Ventilation: The Jerusalem Experience
Eliezer Be-eri, MD

From Negative to Positive
Lewis Gumerman, MD

David Jayne Goes to Washington
NCAHB Update

Congestive Heart Failure, OSA, and BiPAP
Fred Schroader

Medicaid and People with Disabilities: Living in the Community

Potpourri: Direct Relief International; Old Respiratory Equipment;

Book: Look Beyond This Cover: The Bryan Pratt Autobiography

New Interfaces; Equipment News

Journal Articles

Long-term Ventilation: The Jerusalem Experience

Eliezer Be'eri, MD

Alyn Pediatric and Adolescent Rehabilitation Center in Jerusalem provides a full spectrum of rehabilitation services for children from all parts of Israel. (See IVUN News, Vol. 12, No. 4, Winter 1998.)

In January 2000, the independent Respiratory Rehabilitation Unit, dedicated to addressing the rehabilitation needs of ventilator-assisted children, opened. The 13-bed unit accepts patients up to 24 years of age. Most referrals come from the various neonatal or pediatric intensive care units around the country. The most common referring diagnoses are congenital myopathies, severe bronchopulmonary dysplasias, upper airway abnormalities necessitating tracheostomy, and post-traumatic cervical spine or head injuries.

Treatment goals for individual patients range from weaning (with subsequent decannulation) to initiation of long-term mechanical ventilation, fulltime or nocturnal, invasive or non-invasive.

One of the major problems that we encountered in the unit, somewhat to our surprise, was the phenomenon of parents becoming excessively dependent on the unit to the extent that discharge home was significantly delayed. This was due not to the child’s medical condition but to the parents’ fear of resuming sole and constant responsibility for a ventilator-assisted child, which seemed to be related to a lack of self-confidence on the part of the parents and a mindset of chronic hospitalization. These factors were compounded by the limited amount of assistance that ventilated patients receive from their HMOs in Israel. (Adults using long-term ventilation have a better support infrastructure than children have. The HMOs manage home ventilation programs effectively in the major cities, but not in outlying areas.)

As a result, the parents arrived in our unit believing that a meaningful family life would be impossible to establish at home with their child. As the child gradually responded to rehabilitation therapy and improved, the parents’ fear of discharge home, somewhat paradoxically, became even worse: “If we leave now, our child’s progress will stop or be lost.”

To break this cycle and to facilitate the process of going home, we addressed the issue of discharge pro-actively. We established a protocol that the topic of discharge home would be raised with all families within two weeks of admission. A timeline would be set, with a realistic target date for discharge. Parents would be encouraged to take the first steps towards discharge, usually by filling out forms requesting assistance from various bureaucracies, long before the child was ready to leave.

Most importantly, we ensured that the parents and child would leave the hospital briefly – to visit a park or shopping mall or just walk around the neighborhood – as soon as possible after admission and regularly thereafter.

Dalia, a young girl with arthrygroposis an dhypoplastic lungs, feeds an elephant.In April 2002, all of the children in the unit, accompanied by their parents, siblings, and medical staff, visited the local zoo. Not only was the outing great fun for the children, but it was also an eye-opener for the parents. They were having a family outing and enjoying it! Once the mold of passivity induced by chronic hospitalization had been broken, we found that parents advocated for discharge home for their children far more actively and effectively. They became pro-active members of the rehabilitation team.

In addition to the Respiratory Rehabilitation Unit, Alyn also houses a 12-bed residential wing for long-term ventilator users. These people, now between 15-40 years of age, had been admitted to Alyn in the years prior to the development of a home ventilation program in Jerusalem.

They continue to live in the residential wing due to lack of an appropriate home care setting. Most have been diagnosed with Duchenne muscular dystrophy and all use 24-hour mechanical ventilatory support via tracheostomy. They are fully mobile, with LP10 ventilators mounted on their wheelchairs, and travel outside of Alyn daily for work, studies, recreation, etc.

The mean period for using assisted ventilation by this group is eight years, with the oldest member (age 40) using full mechanical ventilation for the last 21 years. At 18 years of age, this patient decided to commence mechanical ventilation, against the will of his parents. Six months ago he completed a 10-day sightseeing tour of France, a longstanding ambition of his. A production team from a local film school produced a TV documentary of his travels, which shows how he attempted to use the Paris Metro – unsuccessfully – despite their claim of wheelchair accessibility.

A striking characteristic of this group is their above average intelligence. This observation has led us to ask, “Is high IQ a predictor of a positive long-term outcome for home mechanical ventilation in people with Duchenne muscular dystrophy?”

The third arm of the respiratory rehabilitation service at Alyn is the Respiratory Rehabilitation Outpatient Clinic. The clinic follows 150 patients with progressive neuromuscular disease, particularly Duchenne muscular dystrophy, and offers both invasive and noninvasive long-term ventilation protocols, depending on individual preferences and suitability for each patient.

In the clinic, we monitor lung function tests, capnography, oxygen saturation, and sleep studies in order to guide patients through a program of respiratory exercises, mechanical in-exsufflations, assisted coughing, and mechanical ventilatory support via facemask or mouthpiece.

Unfortunately, the CoughAssist™ is not recognized as part of a comprehensive long-term mechanical ventilation protocol by the HMOs, and many patients are unable to afford it. To remedy this, we have developed a less expensive in-exsufflator of our own by combining a standard ventilator (which patients do receive from the HMO) with a household vacuum cleaner. Initial clinical trials of the device demonstrate its effectiveness, and the device is patent-pending.

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