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.


Anonymous said...

Thank you for your post. The difference between health care as a human right and health care as a profit maker is enormous - and heart breaking.

When I was in my 20's, working full time and attending college part time, I began growing weaker and weaker with a persistent cough. I didn't have insurance. I finally saw a doctor, who said I was fine. Two days later, I collapsed with severe chest pain and was taken by friends to the emergency room. I had an advanced case of pneumonia, sufficient to cause all kinds of codes to be announced and a rush of medical personnel. As I was being wheeled to ICU, someone called a stop, stating that my insurance card was needed. I didn't have one. The sudden rush of care halted. I was wheeled back to the ER, told to get dressed and leave, which was difficult since I could no longer stand, let alone walk.

Friends did get me home, clutching some antibiotic samples a member of the hospital staff had slipped into my hands. I did live (obviously), but I was on my own, bedridden, in pain, and scared. By the time I was strong enough to pick up my mail, the hospital was threatening a collection action against me for my ER bill.

And the doctor who said I was fine? He wanted his bill paid, as he told me, breathing on my neck and stroking my arm. (I'm happy to say that I joined with some other female patients to bring a successful action against him.)

Fast forward: I learned my lesson and found a policy so I could pay for protection from the thugs. Yep, protection money against the health care mob.

After the birth of my first child, my partner and I returned to his country - one of those evil places with "socialized" medicine. We were expecting our 2nd baby, but fate did not agree. I found myself in "casualty" a/k/a the emergency room, losing my sweet baby too soon for a happy outcome. Despite my sorrow, I blocked the staff from bringing me a new box of tissue for my tears and anything to eat or drink b/c I knew that they would charge me at least $100 for a box of kleenex, based on my US experiences. The staff figured out that I was not crazy, rather I was from the US. They gently explained to me that I would not be charged for anything.

And those dear, kind people gave up their meal and tea breaks to ensure that someone was always with me, holding and comforting me through my time of grief. They did not have to make their time and deeply appreciated kindness fit into an insurance code.

Writing, I am so sorry for your loss and your worries about the role of insurance. And I am so sorry that kindness and loving care is not yet in the American health care paradigm. Please, please let this be the time that we join the modern, civilzed world and extend care to all of our citizens!

Jamie said...

OMG! My brother has ALS (with dementia) and is his condition is quickly degenerating. We are doing all that we can to juggle his various policies - he had very good coverage thanks to his job, yet now that he is retired on disability we are forced to understand the changes in his policies with the addition of SS benefits, etc. Luckily, his needs should be covered at least if we can keep him at home (he is now at our mom's). He is 52. While in NYC, one of his doctor's offered him an experimental treatment that at best makes him feel better and a bit stronger. The doctor kept insisting that what mattered for him was that Michael was getting the treatment, even if it meant delaying his payment until his insurance kicked in or not being paid at all. A true angel!

But flashbacks to my dad who had early-onset Alzheimer's which degenerated rapidly over the two years of his illness. After 30+ years working a govt job at NASA and serving in the Naval Air Force during WWII (serving in the Pacific), we learned that Reagan had eliminated Alzheimer's Disease from the list of diseases covered under his Veteran's Benefits unless he could prove a direct link from his time served in WWII!! Needless to say, nothing was covered, my mom had to take care of him (while she worked full time) and pay for everything. What thanks is that for a man who served his country his whole adult life?

I live in France and although the system is far from perfect, we are secure in the fact that no matter what happens, we are covered.

Thanks for this post and I, too, am so sorry for your loss and what your mom went through.

Anonymous said...

I am so sorry to hear about your mom. She should never had to have lived her last days like that.

You are right, it is all about the insurance issue. If she'd have been covered things would have been much different. Whether she would have lived longer or not I couldn't say, but her quality of life would have been much greater and that is a sorry fact for those of us who have had illness without insurance.

We need this health care reform. So many of us are just a single paycheck away from financial devastation because of health care costs.

I'm living in Canada right now and everyone is covered. Yes we do have some problems, it is not perfect, but it is there for everyone. Personally I am happy paying the 5% GST (government sales tax) on just about everything I purchase. It pays for my health care. It pays for a lot of government programs. It is worth it, and I think as much as Pres. Obama would be loath to do so, he should put a GST on all non essential POS purchases in or out of the country.


ellen said...

I am so sorry to hear about the uncaring and inhumane treatment your mother This is unheard of where I live. I work in an ER and we treat all equally regardless of ability to pay. We have a large population on public assistance and we are also part of a system that provides "free care." Still I support a national health care system so that everyone has access to basic health care. No one should have to lose a home or have to worry when ill about how they will pay for care. This would never happen here. We have a very active legal system and so we over treat rather than risk a lawsuit.

Aviva Gabriel said...

A person shouldn't have to fight insurance to get necessary treatment. Not when they're DYING. That's all I have to say.

That's Beth speaking. Her story is more important than all my little stories about personally battling medical insurance companies (and doctors).

Please watch Beth's video, in which this mother (of two young girls) tells her story about her advanced breast cancer, about why her cancer became advanced (unknown to her until it was possibly too late), and the pain of having to fight (unsuccessfully) with her medical insurance company (of many years) to get medically-necessary care: