Ventilator-Assisted Living©

Summer 2003, Vol. 17, No. 2

(continued)

Home Mechanical Ventilation in the Netherlands

Mike Kampelmacher, MD, PhD, Centre for Home Mechanical Ventilation, University Medical Centre, Utrecht

Home mechanical ventilation (HMV) started in the Netherlands at the end of the ‘60s, when the first centre for HMV was established in Groningen. A decade later a similar centre was founded in Utrecht, followed by centres in Rotterdam and Maastricht. Each centre is based within university medi-cal centres and serves clearly defined regions with approximately four million inhabitants each. Together with the Dutch organization, Vereniging Spierziekten Nederland, the centres have established a platform for combined research, external contacts, and development of guidelines and teaching materials.

Currently, the Utrecht Centre for HMV supports a total of 465 patients (35 children) with neuromuscular diseases (64%), chest wall deformities (20%), pulmonary disorders (12%), and various other problems (4%). Most of them (61%) use noninvasive ventilation – this percentage is still growing. Roughly half are ventilated at night only, and approximately 15% are ventilated more or less continuously, either by invasive ventilation or by a combination of nasal ventilation at night and mouthpiece ventilation during the day.

Our team consists of three full-time medical specialists in respiratory home care (including myself), seven intensive care nurses specialized in HMV, three secretaries, a technician and two assistants, and a dietician.

Candidates for HMV, who are often presented during multidisciplinary consults at a rehabilitation centre or referred by rehabilitation physicians or neurologists, are first visited at home or invited to the hospital for an extensive discussion about the pros and cons of HMV for their specific situation. Consequences for (future) care are discussed, and candidates and their relatives are asked to think it all over before an appointment is made in the outpatient department.

In the outpatient department, a diagnosis of nocturnal hypoventilation can only be suspected because patients are seen during the daytime. Suspicion is based primarily on the patient’s history/complaints, blood gas analysis (capillary) and lung function. Patients are then referred to the specialized respiratory unit – located within the Groot Klimmendaal Rehabilitation Centre in Arnhem – for confirmation of nocturnal hypoventilation by nocturnal blood gas analysis (either capillary or arterial), end-tidal CO2 measurement, pulse oximetry, and observation of sleep during one to four nights.

In most patients, noninvasive HMV is only initiated (the day after confirmation of nocturnal hypoventilation) when PCO2 is 50-55mm Hg, and the amount and severity of the patient’s complaints taken into account. Interfaces are nasal or facial masks (about 75% commercially made) or mouthpieces. Generally, pressure-targeted ventilators, like the Breas 403 or BiPAP®, are used for this purpose. The PLV®-100 is used less frequently in noninvasive ventilation. There is a tendency to postpone invasive ventilation as much as possible, but now and then tracheostomies are needed (particularly in ALS).

In ALS, noninvasive ventilation is only started when there are complaints and PCO2 is >45mm Hg. Without complaints, noninvasive ventilation in ALS is usually advised when PCO2 is 55-60mm Hg.

The respiratory unit combines specialized HMV care and rehabilitation for both children and adults with chest wall deformities and neuromuscular diseases in very comfortable surroundings. Since the unit was opened six years ago as an alternative to the intensive care unit (ICU) in our hospital, which was considered the worst place to be for HMV users, nearly 95% of all (future) HMV users are referred to this specialized eight-bed unit. The physician on call from the Utrecht Centre for HMV visits the unit twice a week and communicates daily on all HMV-related issues.

Under supervision of one of our nurses, patients are discharged from the respiratory unit to their home (67%), congregate living (28%), or nursing home (5%). Children are usually cared for by their parents and relatives, and only in special circumstances is professional home care needed. However, as more and more of our HMV users get older (some with Duchenne muscular dystrophy are in their 30s and 40s), home care by elderly parents becomes more difficult. Caregivers, school personnel, taxi drivers, and volunteers in HMV care, receive extensive instruction, particularly about suctioning (the use of the CoughAssist™ is not yet routine) and cannula care.

An individual with an income of less than $35,000 is eligible for the National Health System (NHS). Individuals with higher incomes have private insurance. The insurance companies of the NHS contract with the HMV centre and reimburse for the ventilator, mask, tubing, and supplies; ventilator maintenance and repair; and home visits by the HMV’s nurses, physicians, and technicians (about $10,000 per year).

Home care companies are independent and sell ventilators to the four HMV centres; a very small percentage sells to insurance companies who supply ventilators to their clients, but this does not include maintenance of the equipment or medical care and followup from an HMV centre.

Nurses and/or attendants who provide care in the home are paid by insurance companies up to about $300 per day or are subsidized by the town in which they live. Many people with neuromuscular diseases who use HMV benefit from the latter system which amounts to $50,000–$150,000 per year. From this money, people can buy care for themselves and even pay a relative or friend. Full 24-hour home care by medical personnel is almost never reimbursed by either method and is hard to obtain due to a shortage of personnel. The lack of nursing and/or attendant care personnel, unfortunately, forces some HMV users to move to congregate living or nursing home.

At least twice a year, the effectiveness of the ventilation is checked by a full night of pulse oximetry and capnometry in the home setting. In addition, all HMV users are routinely visited at home one to four times per year by one of our nurses. Additional home visits are made, when needed, to repair a custom-made nasal mask or to adjust the ventilator settings. Once a month consultation is available with an ear-nose-throat surgeon from our hospital for tracheostomy-related problems.

Our centre offers permanent accessibility and continuous availability. If needed, ventilators are replaced within two hours. Because of the small size of our country, we are able to deliver continuous care from the Centre’s nurses and physicians specialized in HMV to the home, where most HMV users are able to stay satisfactorily for a long time.

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