Ventilator-Assisted Living©

Summer 2003, Vol. 17, No. 2

(continued)

Getting Used to Noninvasive
Bilevel Pressure Ventilation

Louie Boitano, MS, RRT, Northwest Assistive Breathing Center, Pulmonary Clinic, University of Washington, Seattle (boitano@u.washington.edu)

A progressive desensitization plan can help you more easily acclimate to NBPV. You can learn to use sensory stimuli to distract yourself and decrease your sensitivity to both the mask interface and the bilevel airflow.

How noninvasive bilevel pressure ventilation (NBPV) is initially set up and started is pivotal to the success of acclimating to this therapy. Your pulmonologist prescribes the initial bilevel pressures – a higher pressure to support inspiration (breathing in) and a lower pressure for expiration (breathing out). Initial bilevel pressures should be set to enable you to acclimate to NBPV, after which the pressures can be adjusted to optimize your breathing support.

Generally in our clinic, the initial inspiratory pressure is 8-9 cm H2O and expiratory pressure is 4-5 cm H2O. Starting with higher pressures may be counter-productive. Unfortunately, sleep studies may often recommend excessively high expiratory pressure. An insufficient difference between the inspiratory and expiratory pressures can make acclimation difficult and does not provide adequate support for people with respiratory muscle weakness.

A progressive desensitization plan can help you more easily acclimate to NBPV. You can learn to use sensory stimuli to distract yourself and decrease your sensitivity to both the mask interface and the bilevel airflow. The following four-step protocol is an example of a patient-directed progressive desensitization plan.

1. On initial setup, a respiratory therapist from the home care company supplying the bilevel pressure ventilator should show you a variety of interfaces to determine which interface is the best fitting and most comfortable for you. (Many people select nasal pillows that fit inside the nostrils because they cannot tolerate a nasal or facial mask.)

If you do decide on a nasal or facial mask, try wearing the mask unconnected to the bilevel ventilator for 15-30 minutes at a time, at least once or twice a day while listening to music, reading, or watching TV so that you focus on something other than the interface. Do this for as many days as needed in order to become comfortable with the mask. If you are having difficulty with claustrophobia, simply hold the mask to your face for much shorter periods.

2. The next step is to attach the tubing (also referred to as the hose or circuit) from the bilevel ventilator to the mask and turn on the ventilator. Try using the system during the day for 15-30 minutes at a time, again while distracting yourself with music, reading, or television, to become comfortable with the airflow from the ventilator. You may want to connect the tubing to the mask slowly so that the airflow is not overwhelming. Adjust the mask and headgear to minimize annoying air leaks. (At first you may only be able to hold the mask, with airflow, to your face for short periods in order to begin acclimation.) This step should also be done more than once a day over several days to help you become comfortable with NBPV.

3. You may find that you feel comfortable enough to fall asleep during these day-time trials and use NBPV for day-time naps. The next step is to try falling asleep at night while using NBPV.

4. When you try NBPV at night, you should again progress according to your own comfort level. If you cannot fall asleep, do not frustrate yourself by continuing to use NPBV while lying awake. Simply try it again the next night, or go back to using it again only during the day. If you fall asleep for a time and awaken unable to fall asleep again, do not frustrate yourself lying awake, but start again the next night. Even a few hours of sleep with the support of NBPV can begin to help your sleep quality and day-time wakefulness.

With the support of your homecare respiratory therapist, a progressive desensitization plan can help you to successfully start and benefit from NBPV therapy.


Adolescence: Transitioning from Pediatric to Adult Care

Howard B. Panitch, MD, and Cherie DeBrest, MSS, The Children’s Hospital of Philadelphia

“The goal of transitioning is not to remove parents from the team when the child reaches the age of majority, but to place the young adult in control of his or her health care needs ...”

Advances in medical care have resulted in an increased rate of survival of children with life-threatening conditions, many of whom have neuromuscular disease (NMD) and who may develop progressive respiratory muscle weakness. However, the weakness may not impair breathing until later adolescence.1,2

These children will require chronic respiratory support, either part- or full-time, during adolescence or young adulthood. Teens who survive severe spinal cord injuries (the incidence of severe spinal cord injuries in children has two separate peaks, with the later one occurring in mid-adolescence in association with sports injuries and more risk-taking behavior3) will also require chronic respiratory support.

In our home ventilation program of more than 220 ventilator-assisted children, approximately 15% are over 16 years of age. More and more are reaching an age when they would traditionally seek medical care from internists or family practitioners. Paradoxically, they continue to be followed by pediatric sub-specialists in pediatric hospitals. The reasons for this are numerous and complex,4 and involve the children, their families, physicians, and health care systems.

Adolescence is about spontaneity, risk-taking, and asserting oneself among the peer group. As these teens try to become independent and separate emotionally from parents or other adult caregivers, their care can become more complex. Limitations in mobility necessitate assistance with transfers from bed to chair, more specialized equipment, and architectural changes around the home. The adolescent should be physically and emotionally pulling away from the parental safety net, but instead must remain squarely within it.

As the health status of older adolescents changes, they may feel particularly vulnerable and, therefore, unwilling to transfer trust in medical caregivers to a new health care team. Care needs also can become more complex because other body systems (i.e., cardiac, digestive, renal) may become involved and require the attention of additional sub-specialists.

Family attitudes towards the natural course of a child’s illness may influence both parents and child. Families of ventilator-assisted adolescents may feel uncomfortable transitioning to adult programs. For example, expectations about survival of children with NMD into adulthood5 may be low enough that the families do not want to expend their efforts on meeting new health care providers at this late stage of the child’s disease.

A paradigm shift occurs in the relationship between parent, child, and the pediatric and adult health care systems. Pediatricians are accustomed to considering a child as dependent, with health care decisions largely reliant upon parental influence. Internists view the patient as the decision-maker and the person who ultimately determines the medical course.

Adolescents who successfully take their college entrance tests may hesitate to answer questions during routine pulmonary office visits or defer important decisions (such as when to shift from noninvasive mechanical ventilation to tracheostomy) to their parents. Adolescents who are passive participants in the exam room may assert themselves at home through nonadherence.

Some parents need to feel as if they are still ultimately in control, not over the adolescent, but over the disease process. The goal of transitioning is not to remove parents from the team when the child reaches the age of majority, but rather to place the young adult in control of his or her health care needs, with guidance provided by parents and the medical team.

Many of the diseases that result in respiratory insufficiency in later adolescence arise from childhood diseases about which internists are less familiar. Thus, these physicians may be unwilling to assume the care of patients for whom they have not received formal training and whose complex care requires the involvement of multiple sub-specialists.

An independent young adult who is learning how to advocate for herself/himself may not realize how much she/he relies on the accessibility and invaluable case management services provided by nurse practitioners and social workers. Issues with pharmacies, insurance, schools, or transportation may take hours or days to resolve. This amount of quality time is expensive, not well reimbursed, and difficult to obtain in the adult medical world.

The biggest obstacle to successful transitioning of ventilator-assisted adolescents involves insurance benefits. Generally, ventilator-assisted children and adolescents are insured under their parents’ commercial insurance as the primary payer. Medicaid in Pennsylvania is the secondary payer for hospitalizations, durable medical equipment and supplies, and up to 16 hours of skilled nursing care per day.

A cornerstone of home care for ventilator-assisted adolescents is the provision of skilled nurses so the family is able to live, work, sleep, and still have the mental energy to fight disease progression. Seventy-two percent of our adolescents receive skilled nursing care for part or all of the day. Families are trained in all aspects of care, but as care becomes more complex and the child becomes bigger physically, some assistance is mandatory.

When commercial insurance coverage ends, either because of circumstances or because the child becomes too old to remain under the parents’ policy (depending on student status), Medicaid becomes the sole provider for all health care needs. It does not include provisions for shift care nursing delivered in the home for anyone, whether 21 or older. Medicaid deems that someone with a medical condition meeting the criteria for requiring 24-hour skilled care should be in a nursing home environment. (Nick Dupree challenged Medicaid in Alabama on this and won – www.nickscrusade.com.)

Transitioning of ventilator-assisted adolescents and young adults represents a process that, despite many obstacles, remains a worthy and important goal.

References

1. Brooke, M.H., Fenichel, G.M., Griggs, R.C., et al. (1989). Duchenne muscular dystrophy: Patterns of clinical progression and effects of supportive therapy. Neurol, 39(4), 475-81.

2. Bach, J.R., Alba, A. Pilkington, L.A., & Lee, M. (1981). Long-term rehabilitation in advanced stage of childhood onset, rapidly progressive muscular dystrophy. Arch Phys Med Rehabil, 62(7), 328-31.

3. Brown, R.L., Brunn, M.A., & Garcia, V.F. (2001). Cervical spine injuries in children: A review of 103 patients treated consecutively at a level 1 pediatric trauma center. J Pediatr Surg, 36(8), 1107-14.

4. Schidlow, D.V., & Fiel, S.B. (1990). Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult heath care systems. Med Clin North Am, 74(5), 1113-20.

5. Boland, B.J., Silbert, P.L., Groover, R.V., et al. (1996). Skeletal, cardiac, and smooth muscle failure in Duchenne muscular dystrophy. Pediatr Neurol, 14(1), 7-12.

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