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A First Person Account of How The Healthcare Industry is Failing the Disabled and Those Who Cannot Speak for Themselves

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Since my sister's brain injury eleven years ago I have spent more time in hospitals and emergency rooms than I care to remember. During that time I have noticed a frightening decline in the level of care my sister and other patients who are unable to speak for themselves receive.

Perhaps a knee-jerk reaction to what I've observed would be to say that it's all due to "Obamacare"--but that doesn't jibe with my own experience. I began noticing the decline in hospital care long before the Obama administration passed its healthcare legislation. That is not to say that there aren't forces out there so hell-bent on seeing Obamacare fail that they'd have no problem seeing to it that care is withheld from those who need it most. It also would be easy to blame the problem on too few doctors to handle the patient load, or on staffing shortages for nurses or nurse assistants.

While doctors with too many patients and nurse staffing shortages both contribute to the decline in patient care, the problem I am seeing goes well beyond those factors. It seems to reflect both a lack of training in how to care for and treat patients with disabilities and conditions like dementia, and also an outright lack of common sense.

For example, you cannot expect someone who is not able to speak or to use their hands to push the call button to let you know they need to be changed or are in need of some other assistance. Only today, my sister found herself in just such jeopardy. Her mattress/bed malfunctioned, and she was pulled down into it. Her upper body was trapped down at the head of the mattress and her nasal tube pulled taut across her neck, while her legs were up at normal height. To say the least, this was a dangerous position for someone with a feeding tube or a high risk of aspiration.

Other things are commonly neglected that are, or should be, common-sense patient care--from turning on the television or turning up the volume, to opening the blinds or turning on the room lights during the day, or even to equipping patients with their eye glasses. I have come into my sister's hospital room on an overcast day or just before sunset, and found her in a dark room without her glasses. No one had thought to open the blinds that morning or to turn on the room lights as the skies turned overcast. No one had bothered, either, to turn on her television, so she had had to sit in a dark room all day staring at the wall. Whenever I walk into my sister's hospital room and see the look on her face that says "They forgot me," it first breaks my heart and then makes me angry.

When it comes to changing the dress of patients like my sister--those who are unable to move their limbs or who have contractures--I constantly see a lack of attention and common sense. In turning or moving a patient who is unable to actively assist you, it is imperative always to pay attention to the placement of their hands, arms, feet and face. As I've witnessed nursing technicians change and turn my sister, I've more than once had to call out to them to "Watch her foot!" "Watch her foot!" when her foot was caught between the bed and rail. Other times I've had to shout, "She can't breathe!" when her face was buried in the pillow. After every one of those episodes, I've been told, "Oh, its okay." No, it's not okay! A patient is crying out in pain, and no attendant bothers to check why she is crying out and why it was difficult to turn her!? And don't get me started on oral care--or should I say the lack thereof!

I do understand that most hospitals are dealing with staffing shortages. However, most are using travel nurses to cover the shortfall, so there is no excuse. I in fact know of one northern Virginia hospital where about ninety-percent of the nursing staff consists of travel nurses. There are, however, problems with travel nurses. In my experience, they do not seem to have the same loyalty or buy-in to the hospitals they are contracted to as do permanent members of a hospital nursing staff. Perhaps that is because travel nurse contracts at a given hospital are usually for no longer than a year. Moreover, very few travel nurses demonstrate the same level of experience or training as the staff nurses at hospitals. That may be because, in many fields, workers contracted from the outside either do not have or get the ongoing mandatory training required of permanent employees at most institutions today.

With all that said, it is urgent that doctors and nurses of all stripes up their game in patient care. Most people are not able, and should not have, to sit all day in the hospital with their loved ones in order to ensure that the room lights or the television are turned on for them. Yet, in my experience, it seems that more and more hospitals now almost expect them to do exactly that. Things have got to the point where technicians are leaving their duties without giving certain treatments if I am not there to assist them, or my sister is never moved out of her bed and into a chair unless I'm there to do it myself.

The sad and most disturbing aspect of this decline in the level of care for the disabled is that it is just the tip of the iceberg. I have provided only a snapshot of the many ways in which hospitals and the healthcare industry are failing disabled patients, especially those on Medicare or Medicaid. Based on my experience, an increasing number of doctors and hospitals seem to no longer care about patients with disabilities, and have simply written them off. As two doctors at one hospital told me, "I don't understand why we are doing all these tests. Even if we find something we won't do anything [by way of treatment], because it won't cure her underlying brain injury."

Here's a tip for those doctors and others who think like them. Patients with disabilities are people too and deserve to be treated as such. Disabled lives matter. God forbid that one of your own loved ones suffers a debilitating injury or illness and is then subject to the same kind of care I've described. It would behoove healthcare and medical professionals to (1) treat all patients as they would want their closest loved ones to be treated, and (2) remember karma is a b*****.

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I am an individual who believes that as human beings we deserve to be treated with respect, decency, and consideration. I hold a graduate degree in Business, and a bachelors degree is social science.
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