|Photo of author by Kevin Tomasello c. 2015|
I have had careers as a registered nurse and a speech language pathologist (still currently working in this field). I have worked in three different states for several different types of facilities: hospitals, nursing homes, home health, a university setting, rehabilitation, and transitional care. I take my job very seriously and care deeply for the people in my care. The political climate makes me ill, but no matter who you want for President, our health care system still needs an overhaul. We talk of "patient-centered care," but very few health care systems are set up to actually take care of the patient's needs. People enter the hospital with a given diagnosis and if they have a problem that isn't part of that diagnosis, they are discharged and told to follow up with their doctor for whom they won't get an appointment for weeks or months, depending on what the problem is. Patients are pushed out of the hospital earlier and earlier, unless they have the right type of insurance, then they may stay longer than necessary. A patient came in with a huge tumor on his tongue and one protruding from his jaw and cheek. A chest x-ray revealed more tumors in his lungs, showing that the cancer had spread to other parts of his body. The man was deaf, used sign language, and had trouble speaking because of the tumor on his tongue. The doctor decided that the patient was "mentally retarded based on conversation." She did not order a CT scan of his brain. Instead, she ordered speech pathology to see him for a "cognitive evaluation" to determine if he has capacity to make decisions about his care. This is not even in my scope of practice. I could write about many more disturbing examples I have witnessed, but my aim is to keep this post at a reasonable length. It seems that far too often our healthcare system still can't see the whole picture when it comes to taking care of sick people.
I am a big proponent of palliative care for those who desire it or for families making decisions for loved ones who can no longer decide for themselves. For those who are suffering and have little hope of recovery or for whom continued treatment will offer only more suffering in order to live a few months longer. I have found, though, that palliative care, at least in New York State, is greatly lacking. A friend with metastatic lung cancer to his brain had fought a brave battle and had some success with gene therapy that extended his life and quality of life for two years. When the treatments stopped working and he became very weak and ill, he and his wife decided on comfort/palliative care measures through a home hospice program. When I went to visit him, he could barely speak more than a word or two at a time in a whisper due to his weakened state. He kept asking if he could go back to the hospital. When I asked him why, he didn't say that he was afraid of the pain or that he was afraid of dying. He wanted to lift the burden of care off his wife. His wife explained that my friend was upset because he didn't want her to have to wash him, change him, feed him, and stay up half the night with him when he was restless. He couldn't understand why the hospice people didn't help and why he couldn't go to a facility to receive more care. Aides came in a few times a week for an hour or two at a time to bathe him, but no one came overnight or to take care of anything else, and much of the stress was placed on Joe's (not his real name) wife to take care of his daily needs. This caused him more distress than anything the cancer threw at him. Because they had no children and no family locally, the entire load was placed on Joe and his wife to manage his own hospice care. Joe's wife is a strong lady, but she jeopardized her own health taking care of him. She was pale and thin, chronically fatigued, had to take a leave from her job to care for Joe and she was the one who had to run out to get more supplies, leaving Joe alone in the house each time.
Hospice may work better if you have a large family who can take shifts to help, but this is not the case with many families. Those with the right insurance may go to a nursing home, but there is no guarantee that you will receive more or better care there. Skilled nursing facilities are overcrowded and understaffed. It costs approximately $6,000 a month or more to stay in a Medicare-approved nursing home in New York State. If your hospice care in an nursing home includes procedures that help pain, like radiation to shrink tumors that are impinging on nerves, the cost if greatly increased. Home hospice is less expensive, but you receive much less care and if you enter into any hospice program and you live longer than six months, you have to pay back any money paid by Medicare. Many other insurances don't even cover hospice care. In addition to the burden of watching their loved ones die, families also suffer an often catastrophic financial burden from which they cannot fully recover.
I'm sorry that the United States is not the leader in healthcare it claims to be. People get incredibly worked up when anyone wants to change the system and perhaps those people have been fortunate not to need healthcare to any great degree, but your life can change in an instant. All it takes is one bad accident, one cancer diagnosis, one neurological event to change your life forever. No one is immune and if we can't figure out how to help each other better in this country, I am afraid for its future.