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 I eventually discovered, however, that the training involved watching an outdated video on how to use a Bi-Pap machine that did not match the specific model Jacob was using.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.
It essential to have a nursing home for the elderly and those we love Especially in the presence of the Coronavirus, and its presence should be increased because it is one of the basic things in our life.
I live in the states and what you describe is exactly how it is here. We go through 10-15 nurses to find 1 good nurse that is mentally competent, physically able to care for our son. Agency’s have very little accountability to the families and if there is a call off no show etc. then I would be the one taking over for the nurse. This is why I became a nurse in the first place. If I had to work out of my home and didn’t do some of my sons nursing hours I would have been fired and we would lose everything because HC nurses often call off aren’t accountable etc. there are no real benefits. No holiday no paid sick time no retirement no paid vacations. The only reason I do it it because he is my child and I have no choice.
As a Registered Nurse who has worked in the community in a variety of roles, I can say that you are absolutely right about the need for better supports within our home care setting. Our system is very fragmented and often leaves parents struggling to find the adequate care necessary to care for children who have complex chronic conditions.
However, what you say about nurses and their motivation for entering homecare is obsolutely wrong. We don’t go into homecare because we cannot get jobs within a hospital. We go into it because it is a more personal form of care giving. We get to give care that is fundamentally client and family centred. We come into your home and truly get to be partners in your child’s care. We adjust our care to meet the needs of your child’s home environment. Every home is different. Every child is different. Home care nurses are not just the nurses that get rejected from other jobs. We are the ones who are willing to adapt to your home environment to ensure your child’s needs are met.
Often we have families too. We see homecare as an opportunity to be autonomous. We are able to build a schedule that allows us to be home for our families. Something in which a job in a “hospital or medical clinic” will not allow.
Yes. You’re right. The trouble with home-care is ensuring nurses maintain competencies for all skills. It would be great if every single nurse was trained on that particular ventilator your child has. However, there are many different brands out there, that often change based on your location or health care provider. And unlike a hospital, we do not have respiratory therapists in the home to assist us. Our skills and ability to adapt to your environment are our strong suit
As I said before. Every child is different. Every child has very complex needs, and different practices that change. Home care is about continuous learning and training. The nurses that come may not have training in all skills. But we are willing to partner with you to ensure we understand how to care for your child properly.
It’s about partnering with you.
This may be true of the agency you use but not all agencies or nurses..I do home pediatric home nursing because I Love it, Its what Ive always wanted to do.. not because I cant find another job in a hospital or clinic.. I hate hospitals lol. We are trained with whatever equipment the client has in the home.. We are comped in at the home on every piece of equipment. If you get a nurse not trained, call the agency to get the training started. All clients are different and require individual training. I am also the parent of a severly disabled child that receives nursing care in the home.
I am a home care nurse. Thank you for sharing. I think we need to work together to make things better, but it sounds like for the both of us we need better now. The only thing that soothes the ache I experience from lack of paid vacation, sick leave, retirement, education and safety training is social justice work advocating for supports to be put in place. I like your idea except that it doesn’t include nurses like me. I would like to see a strong connection between the hospital and home. If I had access to the great minds at the hospital I may deliver even better care.
What a great idea!!!! I am the mom of a medically complex almost 18 year old – it is SO hard to find home care nurses!! The only downside is the hospitals here are also short staffed – I don’t think they would want to “share” their nurses. Hospitals offer huge bonuses to nurses to get unfilled shifts filled. There is a huge critical nurse shortage across America. Don’t think it’s going to get better soon. It’s a BIG problem.