Long Term Care: The Forgotten Division of Health Care

When overhauling the health care system, an area that needs definite attention, but, I cynically fear will be put on the back burner like always, is long term care. While long term care encompasses several populations, I will focus on care of the elderly in this piece because it is where my experience lies. I am going to discuss what I would like to see happen, while admitting that I do not necessarily know how to implement the critical changes. I am hoping that perhaps my words will reach someone who does know what needs to be done. It will take more than one person to make change of this magnitude a reality. It will take a shift in consciousness and in the way we as a society perceive the elderly.

I have been working in long term care facilities* on and off since 1988, and one thing that I have noticed is that the people residing in such institutions tend to be treated like commodities. This is true even in the best of facilities, and I think the reason is the fact that the facilities are not run by medical professionals, they are run by business administrators.

The facility where I currently work is not only one of the best in the state, but one of the best in the country. It is what is known as a level or step community. The first component is senior apartments where those who need only minimal or occasional assistance, or those who are willing to bring in a dedicated caregiver from an outside agency, reside. Within the same building there is an assisted living section for those who need more help but are still able to take care of activities of daily living primarily on their own. Finally, there is a long term care center which houses people with more severe medical problems requiring constant, dedicated assistance. This retirement community is beautifully constructed and maintained. Even the rooms in the health care center are more pleasant than those in a typical long term care facility. It is free of unpleasant odors such as urine or even strong disinfectant. The workers strive to keep the atmosphere as homelike as possible for the residents.

However, even in this well-run, well-maintained senior community, there is still a tendency by management to see residents as commodities. There is not one medical professional in upper management or on the board of directors. The CEO, junior CEO, and the members of the board of directors are all administrators. Their degrees are from business schools. They have no idea what it is like to deal with people in a caregiving capacity and it is evident in the way they treat the facility residents and in the policies they create.

Frustrating though this situation is, I have worked in facilities that are far worse, particularly when I worked as a CNA for a medical pool. Some of these places not only see the residents as commodities but allow them to be completely dehumanized. The vulnerable elderly are abused by frustrated staff in institutions that resemble prisons more than caregiving facilities. Fortunately, this was not the norm for facilities where I have worked. Unfortunately, it is also far more common than it should be.

Between the extreme cases of places like the one where I work now which strives to provide a homelike atmosphere for the residents and nightmarish institutions which reek of urine and feces and where residents are abused on a daily basis without consequence, the majority of long term care facilities are able to provide their residents with a reasonably clean, small room, three meals a day, assistance with activities of daily living such as toileting and grooming, and medical intervention as necessary. These places are not “houses of horror,” but they often lack basic luxuries such as air conditioning and can be very unpleasant in the summer months. Due to being chronically understaffed, residents often have to wait for care.

In one facility where I worked for a little over a year, there were many times when residents had to wait for care because all staff members were occupied with other residents. Sometimes stressed staff members would step out for a smoke, leaving the floor unattended. The average cigarette takes around ten minutes to smoke. Ten minutes may not be a long time in the scheme of things but can seem like an eternity to someone who needs to get to the toilet but lacks the mobility to do so unassisted, or to someone who is recovering from surgery and requires pain medication. These staff members were not abusive to the residents, but had far too many duties put on them and were frustrated. Given the circumstances, we did our best. But admissibly, our best was often not good enough for people with the high level of need that residents of a long term care facility have.

As well, all long term care facilities are extremely expensive for residents and their families, a room running from $3000 a month and up in the state where I live. A hundred thousand dollars in savings will be gone in less than a year, and many people have much less at their disposal. Families are forced to sell their homes in order to place a spouse or parent in a long term care facility. I consider this to be a travesty.

What I would like to see happen among the other changes that need to be made to our current health care system is a move towards skilled home care. This would be helpful to people such as my parents, whose case is but one among millions. My father suffered a hemorrhagic stroke in June of 2004. He has multiple health deficits, but the one that presents the most immediate difficulty to his primary caregiver, my mother, is the paralysis to his right side. My father is a very large man and my mother is a seventy year old woman of average size who has a bad back and a hip replacement. Although as a retired long term care nurse she is skilled in executing transfers, doing so is difficult. None of the many home care agencies she contacted employ caregivers who can assist with tasks such as transfers. I help where I can but have a full time job and am attending school as well, so the amount of help I can offer is limited. My brother lives 2000 miles away and thus is unable to assist. My mother does not want to put my father into a nursing home so she continues to care for him herself. But doing so is taking a toll on her health as well.

People such as my parents should not have to make the decision to either place a family member in long term care and lose everything they have worked for to pay for said care, or to sacrifice their own well-being to continue caring for their loved one on their own. Instead, people should be able to access skilled, 24-hour home health professionals trained and licensed to do everything that employees in long term care facilities do. Provisions should be made to provide sufficient aides and nurses to do two-person transfers and provide skilled treatments as necessary. This might mean two aides in the case of a person such as my father who requires limited medical intervention but maximum help with movement, or it could mean an aide and a nurse in the case of a person who requires medical intervention such as tracheotomy care or IV therapy.

Allowing people to remain in, and to keep their homes, should be one of the goals of health care reform. We cannot as a society continue to ignore the needs of our fastest growing population: the elderly. Change in the choices for care offered to this group are paramount. I hope that they will be addressed sooner rather than later.

*In order to maintain job security for myself and protect the privacy of facility residents and employees, I have opted not to reveal the names of the facilities mentioned in this article. The situations referenced are all real. Read the next interesting article protect your assets from Medicaid.