This morning I came across an ad in Facebook for an organization called Fair Care Ohio. I clicked to check it out, found my way to the organization's website, and found myself looking at information regarding Ohio's funding for home health care, versus the national average, along with a comparison of how fast Ohio's population is growing versus how fast Ohio's population is aging. Elder care is only to become more of a challenge as time moves on. I learned from looking at the information on the site that a lot of home health care options which are covered by medicare in other states are not covered here in Ohio. The more I have read on this subject, the more concerned I've become. This, combined with my own past experience as a caregiver for my aging grandparents, and as a State Tested Nurse's Aide in 2 different Nursing Homes, has prompted me to accept the organization's invitation to use their site to write to my representatives. I chose to personalize the letter, incorporating relevant parts of the site's pre-composed text into my own story and thoughts on the subject. The following is the letter I sent:
As a former caregiver, I really, really hope to see some serious reform related action by our state in the area of elder care. During my days as an State Tested Nurse's Aide (STNA) in the '90s, I saw firsthand how easily the nursing home system could lead to unintended neglect and abuse of elderly residents. I was a whilstleblower against the first nursing home where I worked, calling in the Ombudsman for the elderly after witnessing that neglect and abuse. Among the things which prompted the call were serious violations of staffing requirements put into place to protect patients. Frequently enough to once even occur twice in the same week, I was told at the start of my shift that due to call-offs I had 28 residents (double the legal max) in my care, and we weren't getting anyone out of bed that day. When I told administrators about a staffing agency that could provide temporary workers to substitute when this happened, I was told "we don't do that. Don't bring it up again."
It took 3 more weeks after my phone call to the Ombudsman for anything to get done, after which I was retaliated against by management, who quickly figured out that it must have been the one vocal advocate of the patient who had made the call. I was forced out of the facility, but not before seeing to it that the state stepped in to make things right. Though the state took over the home and initiated reforms, it took a decade for the facility to improve to the satisfaction of the community, because the corporate management and the staff just didn't care. Even at the next facility where I worked, there were issues which went unaddressed by staff. Though the care was by far held to a better standard than at the previous facility, there was still that element of detached efficiency which on more than a few occasions detracted from the quality of care received by the residents. For me, this was a terrible but valuable lesson in the problems associated with elder care. I was glad that lesson came to me before my grandparents' needs evolved beyond their own capacity to care for themselves.
My family took care of my grandparents at home during most of the end of their lives, each until the time that they needed more professional medical assistance than could be accessed in the home. The difference in our ability to make sure they were happy and well cared-for, as compared to that of the ability families had to do the same for residents in the nursing homes where I worked, was immense.
At the first nursing home, as soon as family went home, my co-workers went right back to not caring. The second one had that same issue, though to a lesser degree, as there was a better aide to patient ratio at that facility than the state minimum employed at the previous one where I had worked.
Home, however, was still superior. We were there all the time, giving us a four caregiver to two resident ratio before taking nurse's aides into account, and the caregivers being family, we were more invested in the care of my grandparents than (from my experience with co-workers) nursing home staff would have been. Even when we had to have home health care come in to help, it was US monitoring them, and not some corporate appointed manager who did not know or care about my grandparents. That made a huge difference in their investment of effort and consideration into the care they provided. It also meant someone listened to and took into consideration the aides' observational feedback, something which often does not happen in a hurried and harried nursing home environment where one nurse is given responsibility for up to 28 residents, and at some facilities, does not even have charge of the same people every day.
Before we were able to fully care for her at home, my grandmother spent a month in a nursing/rehab facility. There, she was supposed to be receiving assistance to recover from a broken hip. However, the home was frequently too understaffed for that care to be provided. The culmination of our dissatisfaction, however, came on Easter, when she was served an egg, despite the explicit listing of her allergy to eggs on her chart. I can only thank God that her experiences with allergic reaction in the past had left her with such an aversion to eggs that, despite the foggy memory that comes with Alzheimer's disease, she refused to eat until she received an egg-free tray. We took her home a full month early. Since she was not receiving the requested therapy anyway, there was nothing they were doing for her at the facility that we could not also do at home.
When, at the end of her life, Grandma's health deteriorated enough for her to need to go to the hospital, we were more afraid of the staff's callous attitude toward her suffering than we were relieved to have help with our effort to care for her.
It is horrible and ironic that the nurse who started the Hattie Larlham foundation in the name of love and compassion was treated by her younger peers with total disregard for both her comfort, and her end-of-life-wishes, but that is exactly what happened. Because she could not communicate, she could not ask for it herself. All she could do was show us, by the tensing of her body, the clench of her jaw, and the hurt in her eyes, that she was in pain. Her previously broken hip caused agonizing pain whenever the medicine wore off, yet for some reason the nurses could not tell the difference between that demeanor and the relaxed, relieved manner she adopted whenever the dose was administered. We had to nag someone to come into the room whenever it was time for her to receive her pain medication, and every single time, they argued that she did not need it unless she asked, KNOWING full well that she could not.
A doctor at that hospital waited for my parents to be unavailable for a few hours, and then bullied, badgered, and guilt-tripped my 80+ year-old grandfather into signing for a feeding tube, treatment that Grandma's living will specified that she did not want. This was done just for the purpose of having something more for which the hospital could bill Medicare. Had Grandma been at home, we never would have allowed that to happen. As soon as she awakened after surgery, her blood pressure began fluctuating, and within 48 hours, she was gone. The state medical board told us that the doctor's behavior was "standard care." My family disagrees. I think it is terrible that we were not given a choice, and even worse that that doctor is still practicing at that hospital.
Similarly, when the time came that we had no choice but to allow my Grandfather to spend time in that same hospital ten years later, he developed a staph infection in his eye, something that I know occurred because someone there did not follow Universal Precautions when administering his eye medication. The end of his life was hastened by that infection, and made more uncomfortable than it had to be, something that would not have happened had we been able to bring nurses in to care for him at home.
Each of my grandparents was dying at the time of entering the hospital, but they were dying peacefully, and at their own pace. They needed nursing care for support and comfort, to prevent a painful and traumatic death, not to take life saving measures.
Each of their deaths was hastened and worsened by someone's incompetence, indifference, and negligence as soon as younger family was unable to be in the room for a few hours, and in both cases, this can be traced back to budget and staffing issues that would not have occurred had their care taken place in the home.
That this can happen, and does happen, is wrong, and it needs to stop. People need to be able to bring end of life health care home, rather than having to leave home to access it. At the very least, elderly patients and their families should have a choice as to where they want to receive care.
In addition to allowing closer monitoring by family, home care would eliminate some of the cost of elder care which is associated with housing.
The cost of home and community care is 1/3 the cost of nursing home care. While nursing home care includes the costs involved with maintaining a facility, home and community care would eliminate those expenses, focusing only on the expense of personnel. This shift in expenses would ease the strain on Ohio's budget without raising the strain on the taxpayer, who is all ready paying for housing. In the case of the 63% of nursing home residence that is funded by taxpayers, this means that Ohio residents are paying for housing twice, whether we are using it or not.
My experience as an STNA, as well as an at-home family caregiver dealing with home health STNAs coming to our house, has shown me that being a home-health aide is a much more attractive option for a professional health care provider. It is more rewarding, and more fulfilling to do the job while answering to the people who love and care for the individual receiving one's assistance than it is to work for a system of management staffed by people who do not even bother to get to know their clients, as happens at regular nursing home facilities. Families want caregivers to exercise compassion, consideration, and humanity, while facility management most value detached efficiency that maximizes profit, often at the expense of residents' end-of-life experiences. I believe that increasing patient access to home health care will result in an increase in the number of individuals interested in joining the health care profession, giving caregivers and staffing facilities more choices among the personnel available and allowing them to better fit the aide to the patient's personality and needs.
Our institutionally biased system is unsustainable. As Ohio’s senior population skyrockets, Ohio will see unprecedented pressures on our economy, health care system, transportation, housing, social services, emergency planning, long-term care resources and more. As this happens, care-giving facilities will see a drop in the quality of provided care. This is not because people in the health care profession are bad, but because they are human. An overburdened system means overburdened staff, and that means more mistakes, and a less choosy hiring situation. Rather than ensuring that they have the best and most responsible staff, nursing homes with their population stretching their facility to maximum capacity will have to take what they can get, and often there is not enough professional nursing personnel included in the staff to ensure careful monitoring and mentoring of the Nurse's Aide activity.
In addition to the issue of staffing, nursing homes are by nature a one-size-fits-all kind of employer. Residents live there full time, without families there to care for them. A resident who needs only part-time care still lives in a facility that must have a full-time staff due to the needs of other residents. At home, the resident may only have to employ part time help, as we did for my grandparents, with an aide coming by for a few hours each day, and a nurse checking in once or twice a week. This is much less expensive than a full time staff at a full-time facility. It also allows for something workers can't get at a nursing home; part-time employment with moderately flexible hours. Such a situation would actually improve the job market in the STNA field, and even for Licensed Practical Nurses (LPNs, a 2 year degree) and Registered Nurses (RNs, a 4 year degree) as care could be fitted to the patient's needs instead of that of a facility.
Neglect and other abuse of nursing home residents and elderly hospital patients is all ready bad enough in our currently overloaded system, especially at bare bones facilities that do only what they must to comply with state minimum requirements. As the Baby Boomer generation ages, the influx of new patients and nursing home residents will only exacerbate the situation. Those who are healthy enough to remain home if they could just receive assistance will be all right due to their mobility and their ability to communicate and assert their rights, but those whose health deterioration has left them unable to help themselves or even ask for help will suffer, some of them for years.
I urge you to make Ohio’s home and community care equally accessible in order to allow more older adults the opportunity to receive care in their own homes and in their families' homes. Doing so will not only save Ohio money, it will save a lot of elderly Ohioans from abuse and neglect, and a lot of Ohio families from a lot of heartache.
Please support the rights of the elderly, and help to stretch our tax dollars and boost our economy, by making it possible for more frail elderly to get the care they need in the comfort of their own homes.
Thank you for your interest in and attention to this vital matter.
Sincerely,
Hannah Wallen
