Marcy White is a writer and special needs advocate.
In just one year, my son, Jacob, was put on Bi-Pap in the PICU on four separate occasions. Only a respiratory therapist was allowed to put the device on him or make adjustments when he was in the hospital. On the first occasion, he was not allowed on any other hospital unit while dependent on Bi-Pap. On subsequent occasions, he could transfer to the General Pediatrics unit as long as his Bi-Pap needs remained stable but, should his Bi-Pap needs increase, he would be transferred back to the PICU.
After a 236-day hospital stay, Jacob was discharged with his own Bi-Pap machine. But without a respiratory therapist to help manage his breathing challenges at home, it was up to me to ensure that Jacob had a clear airway and was hooked up to the ventilator 10-12 hours a day, or more if he was unwell. The home care nurses who were assigned to work with him were also responsible for managing his ventilator needs.
According to the agencies responsible for staffing government funded home care, these nurses had been trained before being dispatched to our home, and were allegedly capable of caring for my medically fragile son. I eventually discovered, however, that the training involved watching an outdated video on how to use a Bi-Pap machine that did not match the specific model Jacob was using.
It quickly became clear to me that most nurses in the HC system are woefully inexperienced and under trained. As time passed and several agencies continued to send candidates whose knowledge was not adequate, I began to realize that home care nursing fails to meet the needs of the community’s most vulnerable patients.
Jacob’s health progressively went from stable to extremely unpredictable. During this time, I learnead that the Hospital for Sick Children began to discharge more and more medically fragile patients back into the community; many of them dependent on technologies or a standard of care that, historically, had been exclusively available in medical settings under the watchful eye of properly trained multidisciplinary medical teams.
Home care nursing may attract nurses who cannot find work within a hospital or medical clinic. New graduates may be hired by an agency and quickly assigned to patients where the sole source of backup in an emergency is to call 911. Many bide their time with agencies, quitting as soon as they are hired by a hospital or clinic. If a home care patient is hospitalized, the nurse may be out of work until the patient is discharged or until a new placement comes up. Home care nurses are paid much less than hospital nurses, often with poor benefits, but their responsibilities are enormous.
As a parent of a child with a neurodegenerative disease who has been dependent on home care nursing for almost 17 years, I’m exhausted. I’m tired of watching inexperienced and inadequately trained nurses deliver potentially dangerous care to my son. I am desperate to ensure my son has a full life and to change the system.
Nobody disputes the fact that home care nursing is stretched too thin. And most agree that this problem will only worsen as medical technologies improve to allow complex patients to live longer than ever before in their own homes.
What if the system was redesigned to deliver proper training and support to home care nurses in order for them to meet the needs of complex patients? What if families could enjoy time with their loved ones without worrying about whether they will have to fill a nursing shift, or live without the fear that a nurse might mistakenly administer a feed through the wrong tube? What if technology-dependent patients living at home were considered extensions of local hospitals and were set up to receive consistent care from nurses who know them? And what if those nurses received an incentive for working with patients with medical challenges, rather than receiving low pay? Maybe then, discharging vulnerable patients back into the community would become a safe and more responsible option.
Hospitals could also consider adding a category of nurses who work, for example, 80% of their shifts in the hospital and 20% with complex patients in the community. This way, if a home care patient is hospitalized, they would receive consistent and competent care from a nurse who is able to identify unique changes in their baselines, possibly avoiding crisis situations. This strategy might even save the government money as it would reduce the exorbitant cost of nursing agencies for the patient population that requires home care.
This novel nursing structure is my dream and with the proper support, it has the potential to become a reality for the growing number of families like mine.