Caregiving Perspective: Training Needed for 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.
Challenges of home health care in rural counties
Did you know that in rural America where I live, many counties have no pediatric home health services at all? In some of those rural areas, even adult services are challenging to find. I now have access to adult services, but ten years ago, I did not. Now, the home health nurses that monitor my husband's care cover five counties and travel over a hundred miles between patients.
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 take into consideration the amount of time spent at the 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.
Signifcant shortage of home health nurses in rural areas
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 regiment 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.
You're on your own
The procedure goes well; however, you have some MS complications from the anesthesia and are unable to care for the ostomy yourself the first few days. Your insurance does not approve 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.
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 to call the hospital's number printed on the front. She smiles, says, "Have a good night," and leaves. You're on your own.
Patients going home with IV lines
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 Caths. 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 per day. The amount left over at the end of the day is given using a tube feeding supplement.The tubes at my houseThen there are the extra tubes that get used like the ones I do at my house:intermittent catheterizationindwelling catheterizationexternal ventilator managementadminister IV antibioticsinitiate oxygen therapy based on oxygen saturation levels and behaviorUsing a catheter on my husband for the first timeI 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 a month, but the medical team forgot to order the procedures to wean his bladder from the catheter to prepare it for the removal. When they took the catheter out, the nurse told me, "Sometimes patients can't go on their own 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 since I had been a nurse, I knew what to do, but no one checked to make sure that I knew how to perform a catheterization. I could have been a mental health nurse with no experience.My daughter administers total parental nutrition to her childMy 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. 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 107F and an IV tube break means possibly bleeding to death. It also means exposure to lots of germs pouring into her bloodstream.More respect and training is neededParents, spouses, and significant others often do not get the respect they deserve from health care providers. The attitude given to family members by many in the healthcare profession is one of superiority. 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.While not always true, most families want to do a good job. If patiently given information in a way that is understandable for someone not trained in healthcare, families jump at the chance to learn. Why aren't they given the chance to learn as much as they can about the care needs of their significant other?Training should happen while at the hospitalFamilies should be allowed to learn everything they can while at the hospital rather than left to learn on their own after they go home. Indeed, let them see the entire chart. Allow them to 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 point of reference to know if what you're doing is 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 a significant number of patients return to the hospital within thirty days of discharge with an infection or complication.The changes that need to happenI 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. It should be made readily available as a reference tool to help families know what they need 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. In fact, the family should share the co-captain role with the patient and have an equal voice with the doctor in being heard.
Does your employer provide workplace accommodations due to your MS?