Plight of Caregivers
Since I’ve retired, I’ve found myself on a mission to do something about the plight of caregivers. Why am I so stirred up? It’s because there is a severe lack of training for family caregivers. The lack of training is especially true in rural areas where families are expected to perform medical procedures with little to home health resources.
Rural Areas Have No Pediatric Services
Did you know that in rural America, where I live, many counties have no pediatric home health services? Even adult services are challenging to find in some of those rural areas. I now have access to adult services, but ten years ago, I did not. Now, the home health nurses who monitor my husband’s care cover five counties and travel over a hundred miles between patients.
Home Health Nurses Poorly Compensated
Nurses who work for agencies funded by Medicare and Medicaid receive pay based on caseload, not how many hours they work. They receive compensation based on the complexity of the case. The compensation does not consider the time spent at home training the family, documenting the care, or traveling to the location from the last patient’s home. Therefore, in the eyes of the nurses, their wages do not compete favorably with the local nursing market. Many nurses leave their jobs after a short stint of working long hours and driving hazardous country roads. Trust me; they seriously are underpaid.
Significant Staffing Shortage
The result is a significant shortage of registered nurses in rural areas to perform necessary medical procedures on patients sent home with tubes, wound care, IVs, ostomies, and other new devices.
Imagine you are a Primary Progressive MS patient who has a neurogenic bowel. You have decided to get a colostomy for better bowel management. Deciding to get a colostomy was a tough decision. However, for years, you struggled with a very time-consuming bowel regimen and fear of having “accidents.” Surgery has the potential to free you from these struggles. So, it is with hopeful expectations that you schedule the colostomy.
The procedure goes well; however, you have some MS complications from the anesthesia and are unable to care for the ostomy yourself for the first few days. Your insurance does not allow you to have additional time in the hospital for training. Your discharge occurs three days post-op as scheduled, with a home health referral for follow-up teaching.
Ten-Minute Training Before Discharge
A nurse meets with you and your wife the night before you go home to show you how to take care of your colostomy. She has a booklet called “What You Need to Know about Caring for Your Colostomy.” She adds that if you have any questions, call the hospital’s number printed on the front. She smiles, says, “Have a good night,” and leaves. You’re on your own.
Unfortunately, this is not an exaggeration. Scenes like this are happening every day. Patients go home with IV lines that allow access directly to the aorta and other major blood vessels through PIC lines and Porta Cath. They must access these lines to prevent drops in blood pressure, give medications, or take in nutrition. Parents manage their child’s nutritional needs using feeding tubes. They calculate calories based on the amount of table food taken by mouth and the total calories needed daily. The amount left over at the end of the day is given using a tube feeding supplement.
What is This Tube Supposed to Do?
Then there are the extra tubes that get used, like the ones I do at my house:
- intermittent catheterization
- indwelling catheterization,
- external ventilator management,
- administer IV antibiotics and
- initiate oxygen therapy based on oxygen saturation levels and behavior.
I remember the first time I had to use a catheter on my husband. He was sent home from the hospital with catheter supplies after a nurse removed an indwelling catheter. The catheter had been in place for a month, but the medical team forgot to order the procedures to wean his bladder from the catheter to prepare it for removal. When they took the catheter out, the nurse said, “Sometimes patients can’t go independently when they have had a catheter in for a long time. If he hasn’t voided in the next six hours and he feels distended, go ahead and insert a catheter to empty his bladder. He might have trouble starting back on his own.
That was the extent of my instructions. The nursing staff assumed that since I had been a nurse, I knew what to do, but no one checked to ensure that I knew how to catheterize. I could have been a mental health nurse with no experience.
Families Need as Much Training as Possible
My daughter has a nine-year-old child who receives total parental nutrition (TPN). An infusion pump delivers TPN through a central IV line that threads through the skin into the blood vessels ending near the heart. The child gets a continuous infusion of TPN around the clock. She carries her little backpack around with her on her back, which contains the IV pump and bag of fluid. Mom has to do sterile dressing changes, IV tubing changes, hang the medication, and manage emergencies like Central line infections and broken IV line tubes. A Central Line infection results in an almost immediate temperature spike up to 1070F. An IV tube break means that a large bore tube that opens directly to the heart runs wide open with blood pouring out until someone can clamp it off. It also means lots of germs are pouring into her bloodstream — just another day in the life of a family caregiver.
Parents, spouses, and significant others often do not get the respect they deserve from healthcare providers. Many in the healthcare profession have an attitude of superiority toward family members. The difference in educational levels sets up a bias in expectations. Unfortunately, the training delivered is often minimal due to that expectation and insufficient to prevent post-discharge problems.
Families Want to Provide the Best Care Possible
While not always true, most families want to do a good job. If patiently given information in a way understandable for someone not trained in healthcare, families jump at the chance to learn. Why aren’t they given that chance? Why aren’t families allowed to learn as much as they can about the care needs of their significant other?
Why not let the family learn everything they can while at the hospital rather than after they go home alone? Let them see the entire chart. Let them be in the room, see it all, hear it all, and answer their questions. They need to know and understand. Once home, there is no reference point to know if your actions are right or wrong.
Performing wound care, they wonder, “Does that wound look healthy or infected?” How do they know if they don’t know what it looked like before? It’s no wonder that many patients return to the hospital within thirty days of discharge with an infection or complication.
I think it’s time for a change.
- I think family caregivers should be allowed to receive reimbursement by insurance as paid providers of care when they stay home to care for their family members. Many are physically harming themselves, trying to work and care for the family at the same time.
- Online training should be available as a free resource and readily available as a reference tool to help families know what to do in a pinch.
- Hospitals and healthcare providers must immediately start to teach families and patients every time they meet with them. They need to tell them about everything. Tell the family about the patient’s condition, what risks to avoid, why those things are risks, and how they can help. Allow the family to be part of the team, indeed. The family should share the co-captain role with the patient and have an equal voice with the doctor in being heard.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC and has been reposted with permission.
