Monday, July 20, 2009

Bloggers, Obama, Health Care and How my Mother Passed Away.

When I saw that President Obama had asked bloggers to help spread the word on health care I realized I have an experience to share. I have done without health insurance most of my adult life, and I have been fortunate. What few ailments I had were comparatively easy to deal with and most didn't require a doctor as I was lucky enough to make use of the knowledge of a good herbalist for most things. Fortunately for me, that was a successful option. But the experience with lack of medical insurance that matters in the current debate is the death of my mother some 17 years ago.

In the fall of 1991 my mother started having symptoms that indicated something was seriously wrong. She was living in the Southwest, and I was on the West Coast some 2,000 miles away. Our frequent phone calls began to include her concerns about not being able to walk up the three steps from her living room to the raised patio. She could only leave her house by the side door where there were no steps. She had great difficulty in getting into the truck my dad drove, so she began to stay at home more and more. She told me of leaning over to feed the cat and falling down. She had to drag herself to the couch to get back on her feet. During the weeks that these events transpired, I kept asking her to go see a doctor, but she was concerned that she and my dad had no health insurance. She was in her early 60's and just two years short of qualifying for Medicaid. Now, looking back, it seems that whatever was happening to her body was also effecting her thinking. Her outlook was narrow and she couldn't seem to understand the implications of letting such serious issues go undiagnosed and untreated.

My parents hadn't always lacked health insurance, in fact at one time they had excellent coverage. My dad had a good job, great benefits and the promise of a good retirement. All that disappeared when the company he worked for changed hands. The new owners laid off all the workers and then rehired some, and released others from their positions. Just a few years short of retirement, my dad was one of the people who was not rehired. After working in a supervisory position, he went back to the kind of work he was doing when he and my mother were young. He cut firewood, he drove a snow plow, and he drove a delivery truck. It was hard work, long hours and difficult working conditions, but he did it. After a few years, they sold the house and land they owned and moved to another state. They bought a place where they could have their own small business and owned the house outright in a short time. But they were still without health insurance or any significant source of income. The loss of my dad's job left them without any of the benefits they had planned on and worked for. So, when my mother began showing signs of illness, it seems they just kept hoping it would go away. My mother kept repeating that she couldn't go to the doctor because of the expense.

Finally, one of my mom's long time best friends talked her into going to see an acupuncturist in a nearby city. After a quick exam, the acupuncturist insisted she see a regular doctor and referred her to someone he knew. The doctor in short order told my family that she believed that my mother had ALS, also known as Lou Gehrig's disease. Arrangements were made for her to have tests done at a local university teaching hospital, but the tests were scheduled for several weeks in advance. By now, she was using a wheelchair and was having trouble combing her hair and taking care of herself. My dad dedicated himself to her total care.

In early May, my mother was admitted to the hospital. Already anxious and by this time quite weak, the MRI's and other procedures were extremely difficult for her. She was the only case of diagnosed ALS in the hospital and her attending physician couldn't seem to resist the temptation to make her an exhibit for touring interns, even if she was sleeping or needed quiet time in her room. After a few days, her doctor told her she might as well go home and that he only expected her to live another 3 days. My dad requested an ambulance to take her the two-hour drive back to the house. Knowing that my parents had no insurance, the doctor would not write an order for an ambulance instead his suggestion was that we rent a station wagon and let her lie down in the back. Fortunately for our family, some of my Dad's siblings had come in to help and to spend time with my mother. They paid for an ambulance to take her back to home. She died there three days later.

To this day, I don't know if she really needed to die when the doctor told her she would. She was so emotionally distraught from the illness and suffered from such great anxiety over the rapid changes in her body, that his prognosis may have been a self-fulfilling prophecy. To this day I don't know if my mother was diagnosed correctly. Though some of her symptoms seemed to coincide with those of ALS patients, she also exhibited symptoms and changes in her symptoms that didn't follow the pattern, only one of which is that ALS patients were generally expected to live for two to ten years after the onset of symptoms. My mother died within seven months from when she first began to notice the intial weakness in her legs and ankles. Once she was gone, I really didn't want to know if there was another explanation. What if we found out it was a mistake? How much harder would that be to bear?

So, if it is possible that she would have been treated with more thorough and considerate care if she had health insurance, we can talk about that. If it is possible that someone else won't be hurried out of the hospital to die and told to go home lying down in the back of a station wagon because they don't have health insurance, we can talk about that, too. If it is possible that her diagnosis, treatment and outcome would have been different if she had health insurance, that I can't talk about, but I really hope you will.