Vol. 19 •Issue 20 • Page 23
Home Care Vents Offer Lots of Options
But Users Must Still Have Safety Plans in Place
Christopher Reeve, in his celluloid role as Superman, could leap tall buildings in a single bound. That was before he became fully dependent for his next breath from a machine following a sports accident.
This real-life example of the strange workings of Fate is a brutal reminder of how fragile life can be. It is a stark reminder that time is the real commodity in life some of those other things we all tend to focus on.
Ventilator-dependent patients are a growing sector in our world of respiratory care, especially in the home care environment where patients can benefit from their familiar surroundings which support their privacy and autonomy. Home can be the optimal location for long-term ventilator care with its generally lower costs.
However, insurance reimbursement is often inadequate for many individuals, because home care costs are often reimbursed at a lower scale than are long-term health care programs.
Mechanical ventilation is a mixed blessing. We always must remember its potential sometimes outweighs its practical application. While offering a way to prolong life, the machines often collide with the quality of life available to the patient.
Ventilator use may be accompanied by conflicts and interfaces with family attitudes, religion, caregivers’ opinions and economic concerns. The out-of-pocket expenses and emotional stresses associated with home care ventilation and care can be enormous, causing a high degree of anxiety for all concerned.
That being said, we also need to remember long-term mechanical ventilation is generally available for patients with special needs leaving the hospital. Subacute care units of the hospital, long-term care facilities and rehabilitation centers are designed to accommodate, train and prepare vent-dependant patients to regain their autonomy by eventually returning to the own homes.
For patients capable of some degree of independent living but unable to live on their own, accommodations like skilled nursing facilities and congregate living centers provide around-the-clock support systems that can respond to a patient’s needs in a short period of time. This is a comforting thought for the patient.
There are many issues to be considered when a culture of vent-dependent care is examined for the home care scene. Patients living their lives attached to a machine while living at home have traded a normal, free and independent lifestyle for the ball and chain of a machine and a need to develop and organize a daily plan for survival. Being hooked to a machine can be an emotional roller coaster ride.
“It was the enemy,” noted one vent-dependent patient. “How dare a mass of steel and dials and tubing take control of my life.”
Patients, especially the elderly, find that ventilator-related issues impact such basic elements in life like income, social status, friends and spousal relationships.
Fearing something they cannot control can wield a devastating power for many.
Home Care Concerns
The lack of control to perform the simplest of tasks we all take for granted become among the greatest physiological and psychological problems a ventilator-dependent person living at home can face. And always there is an overriding fear something can go wrong.
It is impossible to guarantee complete safety of a ventilator even in a hospital setting much less in a home care setting. Who can prevent a power failure or a natural disaster?
Patients with neuromuscular conditions, acute or end-stage parenchyma lung disease and chest wall disorders like scoliosis, thoracoplasty and obesity are always at the mercy of the elements.
That does not mean they need to live in a continual state of fear. These patients and their family members can build up self-reliance by learning the basics in survival training to include airway maintenance and machine mechanics. They need to come up with an emergency plan with communication and back up systems. All those may be necessary for the survival of the patient.
Technological advances, particularly in the development of compact and portable ventilators, have made mechanical ventilation practical for a wide range of patients with diverse medical needs. While checking the Web recently under home care ventilators, I counted over 40 models and 18 different manufacturers all in the business of providing life support for the breathing-compromised patient population.
Impressive Array of Products
The capabilities and the whistles and bells of these products are impressive. My search focus was the quality of performance and the service and maintenance programs of the ventilator. I found malfunction alarms were standard on the home vent models and a list of service contractors was readily available for companies providing onsite services for hospitals, home care companies and long- term care facilities.
At the same time, if there are vents in operation in the home, there is also a need for some type of oxygen to be in place; often the oxygen can be in a portable pack allowing the user some type of flexibility of movement.
Despite all the options available, it still appears that the home health care companies themselves represent the front line and carry a tremendous responsibility for the health and welfare of their patients and their machine.
That being said, that system can fall apart too.
”Help!” came a message from a 19-year-old girl writing to the California Disability Alliance (CDA). The sender was a two year, post-accident, ventilator-dependent quadriplegic.
The sender, Sara, stated in her message: “My funding for 24-hour-a-day nursing care is better than a majority of other people in my situation. But without warning, my home health agency told me that the nurses were unhappy.”
The following day, home care personnel came to the young woman’s house knowing her mother was not home and she was by herself. “They told me they were terminating my case because my nurses did not want to work with me any more,” she told the CDA.
Later she learned the agency had lost several nurses and was canceling the 19-year-old girl’s care because she got 24-hour coverage and the agency could pull her nurses and fill in all the holes in their schedule.
“If I don’t find nursing care, I will be forced into an institution. Horrible! I need help! I’m terminated! My home nursing agency sent me a 30-day notice of termination. After that?” questioned Sara.
No ventilator-dependent patient in a home should be left unattended. Financial costs and caregiver needs must be adequately met, but meeting those goals depends primarily on the family’s personal recourses and often its access to government-funded programs.
You need to ask yourself these questions: If I were to become ventilator-dependent tomorrow, could I afford the services required to live my life with dignity? Are those services readily available to me?
The availability of high-tech equipment and support programs looks good on the manufacturers’ Web sites, but the reality is there are huge black holes in the system for middle class patients and for those already living on the edge.
Christopher Reeve was an excellent spokesman for the cause of at-home ventilator care. But he could afford the best of the best and surround himself with excellent 24 hour care. There’s a vast difference between his case and the situations of most others.
Ventilator-dependent patients traveling on the reality train must be successful strategists and fully functional self-empowered individuals. They can reduce their dependency on others by taking as much control as possible, but they still need help, and they deserve it.
Michael Donnellan is a California practitioner.