Vol. 17 Issue 10
Numbers climb each year
In order to appreciate what society enjoys because of advancements in technology, it is often necessary to reflect on earlier times when conditions were not as rosy and life-saving equipment was not particularly user friendly. A blast from the past can sometimes jog our memories to those days we perceive as being friendlier, to an era when health care practitioners and patients enjoyed a truly personal relationship with physicians and to an age where there seemed to be a feeling of trust that we thrived in a health care system specifically designed to care for our medical needs. That year might well be 1950.
Those of us who remember the 1950s, however, can vividly recall the polio epidemics which transformed the devastation of an unfortunate illness into the shaping reality of thousands of people.
Polio left, among its wreckage, several forms of disability including respiratory system dysfunctions requiring long-term ventilator support. Basically the only respiratory support available at the time was a metal box-like body container which carried the ominous sounding name of the iron lung. So much for the myth of warm medical care.
In the midst of the epidemic, Time magazine published a picture showing a high- school gymnasium packed with iron lungs. They were carefully placed side by side and took up the floor space of the entire room. Sadly, each of the iron lungs, stretching row after row, contained a patient. Countless people housed in that gym were dependent on an iron torpedo to generate a negative pressure so their inhabitants could experience what everyone else takes for granted–a breath.
Patients in the iron lungs were given a new lease on life, something not available to earlier residents felled by polio. At the same time, the survivors were strictly confined to the iron walls of a man-made prison. Such confinement resulted in development of new, less cumbersome equipment. As a result, most iron lungs have been long junked or are warehoused in some forgotten storage building. New technology now affords patients with a chronic debilitating disease an opportunity to experience a higher quality of life. Certainly, the improvements in technology are worthy of recognition and praise.
DOWNSIDE TO CARE
On the other hand, our new and improved equipment still carries some inherent downsides, some of which are only now beginning to show. Many patients compromised by disease, drugs, trauma or some surgical procedures have discovered that in order to prolong their lives, they have been forced to trade freedom for dependency on mechanical ventilation. While not as confining as the iron lungs of 50 years ago, the new ventilator care equipment still puts restraints on individuals, tethering them to a machine.
Specific populations using long-term ventilators are diverse and include pre-term infants, adolescents and adults of all ages. The only thing binding these individuals is a common goal to survive what Fate has handed them. Many ventilator-dependent individuals must integrate a unique blend of medical, physiological, and psychological disorders as they struggle to remain alive.
Some vent-dependent patients have healthy lungs but require mechanical assistance in order to augment the work of their respiratory muscles to move air in and out. Some do not require 24-hour mechanical assistance and may be able to breathe on their own for sizeable chunks of a day, requiring assistance only at night to give their overworked breathing muscles a respite.
For them, the problems are not as severe.
And while millions of people have benefited from short-term ventilator care over the past 40 to 50 years, long-term ventilator care is another story entirely. Those requiring long-term or lifetime care will be impacted by the high costs of hospital, home care or institutional care, and quality of life issues will emerge at nearly juncture.
For the young, those who live at home with their families will have special needs when they travel to school or move anywhere in the outside world.
Just as importantly, as the health care industry has provided new equipment, society has moved ahead with new ways of helping the ill cope with the financial side. But even this has a downside. Once upon a time in this country, up to the past few decades, home care was provided by family members, sometimes in conjunction with religious foundations and charities. Primarily the care was given by a family member, typically a mother; and equipment and relief help would be provided by charitable organizations.
That type of organization is not always possible today for several reasons. First, we have an increased number of people needing such services. Second, stay-at-home moms are exceptions rather than the norm, as economic pressures generally force both spouses to work outside the home. Third, family composition has changed dramatically over the years. Today there is a greater number of single-parent households. Finally, conditions of the patients are more complex, and conditions that would have resulted in mortality 40 or 50 years ago can sometimes be managedÉat least to some degree.
Professional home care providers have stepped into the breach in some instances, offering everything from ventilator and tracheostomy care to nutritional education. These caregivers meet a wide spectrum of medical needs inherent in the hidden lifestyles of the disabled and chronically ill.
Sometimes this care is highly invasive. Consider the care required to provide mechanical ventilation for a patient through an endotracheal tube or a tracheostomy tube. In most long-term dependent cases, a tracheostomy is the best means of connecting the patient to the ventilator. The trach provides direct access to the airway with a fairly secure interface and offers safer access to the breathing system when 16- to 24-hour support is needed. The population of tracheostomized patients is large.
Communication is vital to all patients, and vent-dependent patients are no exception. Need is the mother of all invention, and speaking valves have been designed to give patients a voice. Devices such as talking tracheostomy valves, or one-way valves, restore the patient's ability to communicate.
The speaking device coupled with the appropriate rehabilitation in the use of the tool allows patients to interact with the world. This ability greatly influences and controls their quality of life.
Ventilator-dependent patients with tracheostomy tubes have a few options for breathing assistance. They can use either positive pressure or negative pressure devices. While the majority is positive pressure today, negative pressure, similar to that provided by the old iron lung, has not fallen completely from use. The high-tech version of the negative pressure iron lung is a pressure device known as a pneumowrap. This is a chamber that encapsulates the chest and the abdomen creating a negative pressure, allowing for the chest to expand causing inspiration for the lungs.
Regardless of the advances, the negative downside continues to rear its ugly head. A continually increasing number of children being saved in the nation's NICUs today will be dependent on technology to stay alive for both the long term and short term. Much discussion is currently under way in medical circles regarding the care of these children. Some will eventually reside in acute care wards or in specialty units where specialty care can be provided round the clock. Others, if blessed by sound social, financial and family structures, can live at home in an environment most resembling the way non-technology dependent children grow up.
A natural home environment will likely yield the best outcome for the child. However, the reality of this happening is usually a bit harsher.
Many technology-dependent children do not have an option of living within a natural family home. It is difficult to place these children in foster homes. Some families will reach out to these special-need children, but these resources are minimal too. As they dry up, children requiring highly specialized long-term care are likely to become part of an institutionalized population.
We seem to have arrived already at a point in our health care system where the only option available is to group patients with similar problems in group homes. These are community-based options lying somewhere between institutionalization and the family home. Group homes have existed in England and France for a number of years.
A few scattered facilities of this nature have already opened in California. Louisiana is considering creating a group home that will accommodate ventilator-dependent children, some with additional developmental disabilities. States like New Jersey and Pennsylvania likewise have such communities.
If anything, such centers represent a growing industry. With a growing population needing care and fewer people available to provide it, our options for caring for the technology-dependent, especially children, will be exceptionally limited. We have already seen such needs result in the creation of specialty hospitals and units for ventilator-dependent adults. Group homes for vent-dependent adults, although limited in number, likewise are part of our health care structure today too. Funding concerns will continue to be an issue too, and there is little doubt new pressures on the existing system will create some additional problems in providing care for this special needs group in the years ahead.
Michael Donnellan is a California practitioner.