Kavitha RajagopalanBack to OpinionKavitha Rajagopalan

My father’s battle with modern healthcare

Five years ago, my father started feeling a little bit off. The blues, we said, dismissing his fatigue and slurring speech and slight shuffle. It was all so unlike him – the life of our family’s party boat, the longest, loudest laugh, the strongest opinion, the silliest prank. Go back to school, we suggested, go traveling, try meditating. Instead, he went to the doctor. It was a natural response for the son of a doctor, and a former engineering student himself. Isolate the problem, identify it, solve it.

Five years, dozens of pills and fifteen specialists later, we can safely say that the medical system has failed him. My father is a healthcare orphan.

Three months ago, after fighting a near civil war, the House managed to pass a healthcare reform bill that might lead to one of the single greatest overhauls of social service in our country’s history. But even as the Obama administration limps off to face other proxy battles in the Left-Right war, my father and countless other patients will still be trapped in the nightmare of modern healthcare.

The word “healthcare” itself is deceptive. In his battle with illness, my father has encountered anything but actual care. For that, he has my mother, my brother and my husband and me, but certainly not the many doctors and therapists and health care professionals who have been paid to provide it.

His illness is confounding and exhausting, a degenerative neurological condition affecting how his brain communicates with his body, and over these past five years, it has stripped him of his speech, his handwriting, his balance and his coordination. It has crippled him with stiffness and mind-numbing fatigue, caused him to choke on his food, and altered his personality in dozens of ways. His illness has taken from him the things he loved most in life – travel and sports and conversation. And still, he is the easiest person to make laugh, the most optimistic person in our family about what the future will bring.

How are you so courageous, I asked him just this week? Because, he said, I have hope for a cure.

Because modern neurology relies on groupings of symptoms for diagnosis, and because my father’s symptoms don’t originate in one or another part of his brain, but rather from some kind of short-circuit in his brain’s network, he still has no diagnosis. And without a diagnosis, there can be no treatment and no cure. His many doctors and specialists can only tell him to come back every six months and pay them hundreds of dollars to receive more referrals to other specialists or more tests imaging his brain, assessing his vision and bladder and psychiatric function, monitoring his sleep. The family doctor, who tends to be available, is confounded by the illness and has no more patience for our emergencies and questions. The specialists are inaccessible and only interested in patients that advance one or another research study, in which there are no spots for people without a diagnosis.

Whatever indignities my father’s illness has subjected him to have only been compounded his experiences in the healthcare system. Two years into his journey through waiting rooms and pharmacopeia, one of the leading movement disorders specialists in the country told my upset father, who had started falling without warning, to “stop complaining and get yourself a cute cane.” Two years after that, after a week-long hospitalization and exhausting stint in a rehab facility (with a hearing impaired roommate who left his television blaring all night), an administrative employee with a home health care company called my father and told him that he was not “allowed” to leave his house to go to the theater with his wife because in order to receive the 24-hour care he needs, he had been officially classified as “homebound.”

Not to mention the hundreds of minor and major humiliations he’s had to endure, like being strapped to a gurney for hours after a fall while an on-call nurse finishes a bag of Fritos before calling a doctor to come check on him, or having a trained nurse ask him if he has any trouble “going pee pee and poo poo.”

All of this is expensive, but thankfully, my parents are savvy and bought a blue-chip long-term care policy before my father became ill. My mother also works full-time and has excellent health insurance coverage for her and her spouse through her employer. So, problem solved, right? Absolutely wrong.

The blue-chip long-term care policy, which my parents have already paid for, will only allow my mother to spend $240 a day on in-home care, or $10 an hour. Any professional nursing service charges between $20 and $30 an hour. They require documentation and paperwork for every claim, even a $50 walking stick. They held off reimbursing my mother for nearly one year after she began filing claims, racking up thousands of dollars until their “social workers” had investigated to prove that my father was really sick. My mother’s health insurance plan, in a bid to save money, requires that all prescriptions be filled remotely, by mailing in prescriptions and ordering refills on the telephone. Refills can only be ordered after a set number of days, but prescriptions can take anywhere from seven to, once, 18 business days to arrive. Express shipping costs extra. If my father has an emergency and needs a prescription right away, he has to pay out of pocket for the doctor to call the prescription in to the local pharmacy. My father has been hospitalized six times in the last three years, and each time, various doctors and specialists drop by for a few minutes at a time, charging hundreds of dollars for each visit. After his last hospitalization, the health insurance company sent an investigator to hound my mother like a debt collector, accusing her of committing fraud and leaving messages that came within a hair of actual threats.

Both the insurance company and the long-term care company place the burden of proof that my father is actually ill on my father, while the many doctors and specialists still resist giving my father a diagnosis.

And with the quality of his coverage, my father is one of the lucky ones.

I have no real answers to the central question of the latest healthcare reform debate, which is, who should pay for health insurance? But I know that the debate should focus a little less on this question and a lot more on how to care for the very sick in our society.

Kavitha Rajagopalan is a senior fellow at the World Policy Institute, where she writes and lectures widely on immigrant integration, global migration and the informal economy, and Muslim immigrant communities in the West. She is the author of “Muslims of Metropolis: The Stories of Three Immigrant Families in the West.”

 

Comments

  • Carol Wise

    This story is so well told as to how it is with thousands of us trying to navigate the “healthcare” system to find diagnosis and causes of our illness(s). Thank you for submitting this story.

  • Vikram Kilpady

    I feel this is a universal concern. The situation in the US is not very different from India. While it is fashionable to dismiss the public health system here, the private ‘corporate’ hotels are the worst offenders. Some elements of nursing care is left to untrained toilet cleaners since it’s taboo to help a bedridden patient with the bed pan. There’s no care, it’s just bills and bills.

  • Sonia Gupta

    A well written personal story, captures the emotions and feeling of helplessness one feels when facing illness that requires hospitalization in this country. I have faced hospital bills as well for doctors, that come in for a few mins, and send bills of hundreds of dollars. Often they are ‘out of network’ doctors and I have to foot most of the bill. Reform needs to be in making care givers accountable. In making billing/costs transparent and their success/satisfaction/quality of care accessible to patients. The same procedure cost varies greatly from one hospital to another. Any reform will go a long way!

  • Scott A Olson

    Long term care insurance is regulated on both the state and federal level. Every long term care insurance policy has a specific “claims process” that must meet state and federal guidelines.

    Each policy also has a simple, step-by-step “appeals process” if the claim is initially declined. If a claim is declined the insurer is required to delineate the reasons for denial. Appealing a denied claim rarely requires an attorney. In most cases, it simply requires a clarification of information provided by your doctor or care provider.

    According to Sen. Grassley, 70% of LTCi claims that are initially declined are approved after the “appeals process”. This indicates that there is a lack of understanding in the healthcare industry of what is needed to process a claim for long term care. Most healthcare professionals are accustomed to processing medical insurance claims, not long term care claims. Fortunately, the appeals process works.

    According to the March, 2007, NY Times article, the leading long term care insurers average one complaint for every 10,000 policyholders. According to that same article, the largest long term care insurer averages only one complaint for every 12,434 policyholders.

    According to the Des Moines Register, only 18% of long term care insurance complaints are “claims-related”. That means the leading long term care insurers receive one “claims-related complaint” for every 55,550 policyholders.

    The risk of needing 5 years or more of long term care is significantly higher than the risk of having a long term care insurance claim denied.

    Scott A. Olson

  • Maureen

    Story is right on point. I am in a similar position having only now been diagnosed with a “non-differential” auto-immune disease. I live on SSI and Medicare is a horror story although I have better coverage than most. The specialists are just as pictured in Kavitha’s story. I have lost my primary four years ago and have endured humiliating disregard from other doctors. I figure in the last 30 years I have wasted thousands of dollars on inept, non-caring medical care and this is typical of our American style health care. More money is spent on “feel-good” books that give easy answers for difficult questions while patients suffer not only from disease but from medical morons who want a blood test to tell them all. Then they push the newest medication that their Pharma representative has just urged and don’t care whether or not the med is successful or whether the patient’s health insurance will pay. We have come to a new era in callousness – where the patient is to blame for their condition and, since it is their fault, they deserve to suffer.

  • Roger

    What a whiner! How about showing a little of your Dad’s steely resolve and courage. Or get up off your a$$ and lend a hand personally. I am 17 years in to a battle with Parkinsons Disease and the only reason I can type this is because my Sinemet just kicked in. Society should assist some…but you are your brother’s keeper my friend…and your Dad’s girl. Help him. Donate a % of your salary to finding a cure.

    Roger

  • Stan Divorski

    What a tragic story. I am glad that you used the term “health care”. The debate in the US has focussed on health insurance instead of health care, with the resulting battles that you describe. Instead of bickering about private versus government “health insurance”, americans need to decide what kind and level of health care americans should receive, then decide how it can be provided.

  • Parker

    Roger: Did you finish the article? She can’t “donate a percentage of her salary to finding a cure” because they don’t know what he has.

  • T.M.

    @ Roger, sick or not, YOU are a insensitive, jerk. I hope that as your disease progresses and you become more and more reliant on others that the comments you have made here are not thrown, hatefully back into your own face.

  • Shelly

    Well written, cohesive article…I experienced an ‘atypical’ closing of my throat in the middle of the night…hundreds of out of pocket dollars later, after Medicare paid what they did…I still don’t know ‘Why’…nor do the three different groups of Dr’s — ENT’s, Primary Dr., and etc. Five biopsies of my throat came back negative for any cancers (THAT’s a good thing), but no answers on the why of a very unnerving situation — on the way to the ER the only thing keeping my airway open was ice water through a straw…Interestingly the ONLY person who SAW an anomaly was the technician who took the x-rays at the hospital. I was sent home at 6am only to get a callback from the ‘changing of the guard’ Dr. — three hours later — who actually saw what the technician saw…and ran MORE tests at the hospital and forwaded me on to the ENT Dr…ONE STOP SHOPPING needs to be the order of the day at hospitals…not out the door for more tests, (some duplicated and expensive.) Ridiculous system we have in the good old USA. Everyone has a CYA (cover your ass) attitude & looks out for #1 — THEM not US. Thanks for a very timely article as our government attempts to correct the ills with our medical system.

  • Todd Bandrowsky

    Roger may offend your sensibilities, but he is right. If a woman who has more degrees than a thermometer cannot or will not pay for the health care for her own father, why should anyone else? Or, how can anyone else? Perhaps the medical system hasn’t failed, its just, that people die, and that’s all there is to it.

  • judith

    I would really appreciate it if you tell me the type of personality changes which your Father exhibits.. I am presently in the same situation with my husband ie neurological symptoms with no known cause and very serious personality changes including extreme mania.

  • Joan

    Todd – and what about her own health, her children’s, etc.? She could spend her whole life savings paying for her dad’s health care. Who pays for hers?

    The ugly secret of health care is the paperwork. Just try spending all day on the phone trying to get your daughter’s needed medicine at an affordable price. Try filing appeal after appeal to for denied claims. Try making phone call after phone call to find out why your disabled daughter’s medical coverage was mistakenly DROPPED two months prior and you got no notice. Try finding the right person to get it reinstated. Try filing paperwork over and over again because the insurance company “lost” it. Try to hold a job and take care of the disabled person while doing all this on the side. Try to get help and get put on a waiting list.

    Perhaps health care shouldn’t be a business that makes money by denying claims and pays employees to do nothing but stymie your efforts to help your family.

  • Patricia

    A story that is unfortunately told over-and-over again in a health care system that is costly, burdensome, and treats patients with disdain. As an RN, I see this everyday. As a patient with a chronic and debilitating neurological condition (MS), I experience it first hand. Even if we figure out who will pay for healthcare, we have forgotten compassion, simple kindness, and dignity.

  • Susan

    People who haven’t suffered through this think it will never happen to them. Anyone of us can become a victim. I think long term disability insurance is a scam and have all resources to deny payment on insurance you paid privately for and do qualify for according to the sales brochure version of coverage.

  • Richard

    Many of the heartless comments here along with the content of this article confirm an impression I’ve been developing about this country over the last several years. Although it is difficult to make a generic statement about a country with so many variables within that country, I believe America – as an entity – lacks a collective heart and soul.
    When Reagan coined the term “Evil Empire”, who would have thought he might be describing his own country – a country that self-righteously goes on killing sprees in distant lands while despising the basic human duty to care for its people. Enough said. This is an opinion – nothing more , nothing less – and unfortunately for America and its future, sadly not far from the truth.

  • T.M.

    Thank-you, Richard. Very well stated. I, for one, totally agree with you.

  • Sheila

    this story hits home – on two levels – my Mom was diagnosed (who knows if it was truly the right diagnosis or not) with sporadic cerebellar ataxia about 20 years ago. no cure, just like ALS but you can live for years in a downward spiral until you end up with a feeding tube and can’t move a muscle, even the ones necessary to speak. Sounds like your Dad has something similar. Mom, after 10 years of progressive deterioration, died of a heart attack, not related to the ataxia, because you can’t die from the cells in your cerebellum ceasing to function. A horrible nursing home death. So, now, so many years later, my stepmom gets billed for a $700 ambulance ride to the hospital (a two mile drive) and has to pay it, no choice. How do we let anyone, let alone seniors, be ripped off like this? Heartless? you bet.

  • Yenta

    I will be 64 in October and have no health care at all. I gave it up. I have been in generally good health and gambled that the money that I was paying for my plan wasn’t worth it. As an attorney in private practice, I was in a group of lawyers who were aging and the premiums went sky high for crummy insurance with huge deductibles. Most of my bills were paid out of pocket. So, I canceled the group insurance. I will know when I reach 65 whether it was a good gamble, but I don’t have to deal with health plan jackasses anymore. If I go to the doctor, I pay. Health insurance is a bad joke in this country and the lack of a good mandatory public option is going to make it more of the same before everyone realizes that the public option is the only answer. I can’t wait to be 65 to qualify for Medicare. At least it is real insurance–although what it actually will be when I qualify, well, who knows?

  • Katie

    I don’t have the words to express my frustration with the “healthcare” system we have or my sympathy with the writer’s situation. I think “care” should be completely removed as a descriptive for what we currently have. No one who favors the current system has ever experienced it enough to appreciate it’s real insanity.
    Even with the best policy, it’s hopelessly bogged down with an obsession about making money rather than care for patients. I’m all for capitalism, but when it’s at the expense of human lives, there’s some perspective that’s been lost. The motive isn’t care, it’s profit. Patients aren’t valued human beings but profit/loss generators, and hospitals do everything they can to cut costs at the expense of patient care and comfort.

  • Elizabeth

    Was Parkinson’s Disease ruled out? Ruled out MS? Parasites? Accupunture to rpossibly pinpoint what body system(s) is affecting him. Pray to God, pray the rosary, you do not have to be Catholic and ask God for a diagnosis.

  • Rhea

    Each day at work, as a theapist ,I see these same cases, We may not be allowed to treat the patient after a week or two because Managed Care Insurance decides the person has progressed enough and no longer need any therapy. Managed Care companies must believe in miracles to expect someone who has had a recent stroke to be independent within 3 weeks and ready to go home. And there ones who have not insurance? No way do they receive any therapy.We need to take the profit motive out of health care. It is ruining our health care as well as our heakth and denying us the care and comfort we need when we are ill. Many people could live longer, happier lives if we decrease the medications and increase the number of caregivers AND pay those caregivers, the CNAs, a living wage.

  • NLF

    Rlhea,
    I have to admit, at least there is one like you.
    I was a CNA, workerd very hard trying to take care of 27 patients in a Nursing Home Facility, but there was not much help. Imagine, trying to care for all those people in 8 hours. People like Rodger the Dodger above, has never done anything like that. I bet if you paid him twice the going rate he would have walked away. But yet he has got many negative statements toward the author.
    This is why America will take a long time to change.

    Roger the Dodger should be sent back in time to experience the Maurading Hordes like Gengis Khan, Kublai Khan, The Romans, the Tartas, the Vikings, the Azstecs and many others who ruled and were brought down to their knees.
    Go Roger Go!!!.

  • NLF

    To ALL believers,

    This is the only country in the world that makes healthcare a business.
    America has no conscience, they pretend to have religion. but even that is turned into a business. Look at the dummies on the programs in Radio and TV. They talk about GOD. Even the Presidential elections was governed by it. WHY?.

    How dumb are Americans. Or maybe, most of them who talk are Republicans because they are the ones controlling the Media.
    The minority are the ones who suffer, and because there is no one fighting for them they will continue to suffer until the Rich get Stonedwalled, but their own greed.

  • Rhea

    It would seem that a Unioin of sorts would be a GOOD idea for CNAs in all situations. It is wrong to expect those of us who do the really hard work in health care to be so negelcted in rewrds. I daily thank those strong and loyal people with who I work for making my job easier because of the assistance and the information they provide. In the south that word can get me fired, but it seems the only way to insure that those who provide care

  • NLF

    Rhea,
    My civil case after 2 and a half years came to an end on the end of June. I had no help from the EEOC and the list of lawyers about 65 in all of them, that they pretend to recommend from, all Human Resources from the hospital and all Bar Associations in Maricopa county in the Phoenix area. I, not knowing any legal terms or legal matters, had to fight on my own skills. The Hyprocracy of this country in saying that they have justice is a laugh. The Judge, and I mean the one supposed to rule on JUSTICE, has no sense of right or wrong.
    I, with the greatest difficulty managed to answer all legal terms, but the Judge had no compassion or empathy in dealing with my case. Needless to say, I lost.

    My next objective is to write to Obama, although I have written to him, and get only replies from his subordinates, I hope to at least make his office know what is going on.

  • NLF

    To Add to my above statement:

    The Human Resources in the Hospitals are a Joke. They are the counter-feit agents and will only fight against you and take the side of Management. And according to law, that is what they are about, they pretend to listen to you but do NOTHING.

    If any of you have a friend in a Hospital. Tell them so.

  • Richard

    Re. NLF’s realization of how “things work” in today’s America.
    The American people have been brainwashed. The American people live in a dream world completely unaware of the here and now present-day America. America remains self-identified with a fabricated American identity. Americans continue to believe the America of Rosie the Riveter, the Triumphant WWII American Servicemen returning to tickertape parades and a Vital Industrial Might second to none – living in a place where justice and freedom will forever reign supreme – still exists. It does not. Period. Without a dramatic change in awareness – a massive wake up call for example, do not expect anything different from America as ” Island America” is frozen in time and will not change. This is not that dreamy, fair and idealistic country portrayed in the many and varied forms of cultural propaganda. It’s a country and culture of, dare I say, “Liars” on all levels – as exemplified at the top by Mr. Bush’s audacious “Weapons of Mass Destruction” basis for the attack, killing and continued occupation of the sovereign nation of Iraq. Americans are unknowingly living a lie played out in their firsthand daily experience – as in the case of NLF- with the judicial system, Human Resources…and the list goes on depending upon the particular situation. And no one will do anything about the status quo as it is accepted and complained about but nothing more will ever be done about it. Ever. Roll over and accept what is. Please prove me wrong – if you can.

  • NLF

    Richard,

    Freedom, as defined in America is not Freedom.
    I have retired but because I live just above the poverty line, and I mean, almost walking in the street – Poverty line, I don’t want to loose my AHCCCS benefits. I being in this state of needing medical care, have to make sure I don’t go beyond $10,000/-
    a month. This is barely enough for my basic needs, and having no one else to support me, I am, by law, not entitled to go out and work, to have a little spending money. The cost of living is too high, compared to the Third-world country I came from. People in America, don’t know any better. If I had basic minimum wage in my country I would have all benefits including free medical aide. This Americans can’t comprehend, because that is the way they were brought up.

    But for all it is worth, and I have read some books, we just can’t give up!!. We have to keep trying to make it known, as to what is going on. I am writing to Obama, not that he would do anything but maybe his office look into the matter.

  • NLF

    Funny how the comments stop.

  • bookworm worm

    There are several medical questions that are raised by a wrong diagnosis.