Is managed care worth the price of a life?

The first time I met Tom his head was on the table at the Christmas banquet held by the mental health support program where I worked. He was sitting next to his wife, who worked on the staff.

Tom’s alcoholism soon brought him into the program, fractured his marriage, and I became his first case manager. The alcoholism had roots in childhood abuse.  Years of drinking followed, with hospitalizations, chaos and plenty of charm and fury. Tom had a huge heart and capacity for engagement. He was a hard worker. Quick, smart and helpful, he was never mean or angry.  People were drawn to him for his sense of humor, warmth and playfulness.  The days he was able to take care of his little daughter were precious to him. His relationship with his wife remained loving, although she soon left the area with their daughter and became a social worker in another state.

And I too left the agency as did some of his original staff. After the requisite two years of no-contact, we all were able to re-connect with him from time to time. He was often a delightful companion.

After years of intermittent crisis and stability, Tom started Seroquel and immediately he was able to maintain his commitment to sobriety. His life became stable, predictable. He found steady work, and moved into a home on the property of one of his steady supporters.

Then, managed care came into the area. The county was forced to assess their clientele and dis-enroll those who seemed to be doing well. Tom’s support program workers were dismayed, and thought long and hard about Tom’s situation. In the end, though, the county cut him loose.

When I ran into him after years of not having seen him, he was still working and living in his home. However, he was very worried, in ways I couldn’t quite understand. He told me he was going to lose his medical benefits, that he couldn’t afford his medicine. He may have also mentioned that his relationship with his daughter and wife had apparently vanished. His thoughts were churning, his distress was evident and I didn’t know what to do about it. I didn’t fully grasp the significance of what I was hearing. I hadn’t known about the critical difference the Seroquel made for him.

Neither, apparently, did the nurse for whom he worked, nor the county worker whose property he was living on and who had seen him through thick and thin. When he started drinking again she told him to stop. He continued to show up for work but often didn’t answer his phone or return messages. There were no calls from his daughter or wife after he had missed her graduation. What they didn’t know, until it was past too late, is that he was supporting a family member with a drinking problem that day. It was a decision that dove-tailed with his dislike of travel and they thought he’d just blown off her special day.

It was the perfect storm. No meds, no calls from his family, no supports, no hope. The day he didn’t show up for work his co-workers went to his rural home and found him. He had shot himself in the head.

The signatures filled the book at the funeral home. The room was packed for hours. Tears streamed down the faces of his adult daughter and his wife. Slowly the pieces came together.

So much love; so much pain.

So, the question remains: what part of “doing well” means that critical supports can be removed?

We know that if a person who does well on a medication and stops taking it, our response is: “help me understand why, if you’re doing better on that medication, did you stop taking it?”  Tom wanted to be well. He didn’t stop taking his meds because he couldn’t handle health. He didn’t have that choice.

Is managed care worth the price of a life?

Kristy Jensch is a former case manager.

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  • http://www.facebook.com/driver.bennett Ben Bennett

     What a twisted tale.  I was a part of psych care for over 12 years, and it’s this current system that supports denial of care to people.  Today, managed care is used to decrease costs for caretakers who must rely on insurance and/or government payments for patient care.  Tell me, what do you call it when you prescribe medication costing $300.00 to a homeless person?  Also, most of us realize we’re just medication junkies and will not be cured with modern medications and only a mentally compromised person would have the nerve to declare himself healed and stop taking his meds because he “feels better”.  Of all the areas where managed care is needed there is none more needed than mental health.

  • http://twitter.com/Hootsbudy John Ballard

    The problem you describe has roots that go way past what later came to be called “managed care.” It began in the Sixties with one of those well meaning trends that has had devastating unintended consequences. It was called “deinstitutionalization.” Look it up. The short version is simple: All over the country state mental hospitals were the repository for just about any poor creature with any kind of condition that family and/or local resources either didn’t or couldn’t handle. 

    Conditions of these “insane asylums” were not uniformly terrible but for the most part they were too big to manage well and too underfunded to be effective. Here in Georgia, Milledgeville State Mental Hospital was considered to be one of the biggest and worst. As a college student in 1963 I was part of a group of students on a day trip there to learn about their budding music therapy program. 

    A former Georgia first lady (Governor Vandiver’s wife? — not sure) had raised enough money to fund a building and staff improvement program and the hospital was building new facilities and hiring staff as soon as both could be acquired. We were told that the in-patient daily census at the time was about thirty thousand. They were self-contained with a farm which produced chickens and other food used in the food service operations, patients were employed wherever possible which was considered therapeutic, and the campus had more buildings than many colleges and universities. One such place, encircled by high fences with barbed wire at the top, was identified as the place where dangerous criminally insane inmates were kept. 

    Soon after that — and I’m not informed where or how this started — there was a nation-wide movement toward breaking up such places because (and here comes the tragic part) local mental health clinics and other local resources where better equipped to deliver more individualized treatment for many of these “patients” many of whom had no worse issues than what we now called developmental challenges. 

    This is a long and ugly story that still has no ending. Your substance abuse tragedy here is a small part of that misguided policy move. The places were horrible, but in too many cases the alternatives have not been any better. America’s homeless population is in no small way part of the legacy. I am personally familiar with a case where a young woman in her late thirties who was put there as a child, presumably because she was “retarded,” was finally evaluated and released to be on her own. She was sweet and friendly but she had no education or social skills, certainly nothing that would enable her to find and hold self-supporting employment. Her teeth were grey and rotting from years of being medicated and the only people who took her in were a distant relative and his wife whose circumstances were already stretched too thin. 

    When I think of how poorly we treat those with substance abuse, developmental disabilities and/or more serious psychological problems it makes me both sad and angry and this post has pushed another of my buttons. 

    I wish the problem were as straightforward as streamlining “managed care” and adopting digital records all over the place. But as long as millions of people are not even insured (thank God most people are basically healthy and durable enough to get by without much attention) cases such as this will forever be part of what it means to live in America. 

    PPACA is a messy piece of legislative sausage, but it’s the best that can be managed in today’s contentious political circus. Unfortunately the opposition to any public option never made it into existence and the irrational fear-mongering about socialized medicine seems to be getting more traction as we wait for the Supreme Court to decide about many issues and the hit pieces assailing “Obamacare” keep getting more crazy by the week. I wish I could put together a more optimistic comment, but this story has plunged me into a dark funk. Anyway, thanks for reading. 

  • http://nourishourselves.blogspot.com/ Marie

    I must be missing something. 
    How did managed care cost this apocryphal patient his life?    It is mental illness that caused his
    demise, not managed care.  If anything
    failed him, it was the appallingly poor mental health system we have here in
    this country and the people around him who did not act when they saw someone
    unraveling.

     “The county was forced to assess their clientele and
    dis-enroll those who seemed to be doing well.” is stated like an
    indictment.  But dis-enrolling patients
    who no longer need services is fiscally and medically responsible, not
    neglectful.  “So, the question remains:
    what part of “doing well” means that critical supports can be removed?”  I would say the question should be what is
    wrong with the county’s clinical assessment skills that they could not identify
    an actively symptomatic, suicidal patient with a poor support system? 

    Even if he no longer had benefits through the county, there
    are many programs available to fill in gaps in insurance coverage, including
    one through AstraZeneca for Seroquel.  If
    they had to “cut him loose”, why wasn’t he provided with or helped to apply for
    other assistance?  He had a steady
    supporter in his landlord?  “When he
    started drinking again she told him to stop.” 
    Are you kidding me?  The author
    recounts that she encountered an individual who clearly was in crisis, but she
    “didn’t fully grasp the significance” of what she was hearing?

    If true, this is a tragic story, but it has nothing to do
    with managed care.  From his family
    freezing him out because of miscommunication to his caregivers not exploring
    options for him to his choosing his final, violent end, each individual was
    responsible for their own actions or lack thereof.

    • http://twitter.com/Hootsbudy John Ballard

      Marie, you seem to have answered your own question when you said “If anything failed him, it was the appallingly poor mental health system we have here in this country.”  The term managed care is a euphemism for saving expenses by providing as little “care” as possible. The metric is not care but costs. If the metric were care, the term would be coordinated care, not managed care.  Good coordinated care by definition must include mental health. (Truth be known, it should also include dental health also, but I’m afraid we are still too primitive for that to even be considered.)

      Until we have a medical records system for every patient complete enough to include every problem — including substance abuse, personality profiles and psychiatric anomalies — we can expect cases like this one to remain part of what the military calls collateral damage. 

      • http://nourishourselves.blogspot.com/ Marie

         I agree, coordinated care (including dental, which can lead to myriad health problems) would be the gold standard.  But, cost aside, we cannot even get healthcare providers to agree on electronic medical records, never mind what kind of care a patient should be getting.  Saving money gets in the way, but so does egotism, self-interest and personal greed  (as opposed to corporate greed). 

        Providers who truly put the patient’s interests first are few and far between.

      • Codyblue

        Bravo. Well said.
        And while we are at it, hearing care services too.
        All of these are critical.
        Thank you.

    • Codyblue

      First, this is not an “apocryphal patient.”  He was a real person. A man who was working and paying taxes as we all do.
      Yes, he had a mental illness, which when the medication which controlled his anxiety was not available to him, he managed with alcohol. Is mental illness an indictment?
      My premise is that he did not “no longer need services”. He did need them, they assisted him in keeping his balance. Why does looking healthy automatically disenroll one from life-sustaining service?
      And yes, it was a perfect storm. But there was no way to get him back into services once he was disenrolled.
      The tragedy is the apathy with which this situation is responded to by some of these writers. Are we all so overwhelmed by the needs and limits to our reasonable abilities to serve that we can no longer afford to care?

  • sFord48

    It’s not like we as a culture care about those people that die from lack of healthcare.  So what is that life worth?  A mandate?  Socialized medicine?

    The government was paying for Tom’s healthcare.  It stopped.  Aren’t we happy that Tom was no longer living off the government?  Aren’t we happy he had some “skin in the game?”

    • http://www.facebook.com/people/John-G-Self/1354275188 John G. Self

      Of course the Patient Protection and Affordable Care Act is not even close to socialism. It represents only about 30 percent of what President Nixon proposed.  Sen. Kennedy said the biggest mistake he ever made was not taking the Nixon healthcare deal.

    • merc

      sFord48, someday I hope you develope empathy, and the ability to learn what you don’t want to learn.

  • http://www.facebook.com/people/John-G-Self/1354275188 John G. Self

    The truly sad part of this story is that it is not that uncommon.  I have been in healthcare for more than 30 years, as a CEO, senior executive, program manager, etc.  I know that we are about to experience a massive transformation owing to the budget deficit crisis. Medicare, the single largest contributor to our annual deficit, is financially not sustainable for future generations.  In fact, in less than 12 years, we will face an epic financial crisis in our ability to pay claims. “We will have to make some hard choices,” as politicians like to say as they reward their respective supporters. 

    There will be many tough challenges, but our biggest will be to minimize the number the number of tragedies like Tom who will be ignored, lost in the system,  or crushed by these systemic changes.  In a country that has made right to life such an important issue, these stories will reflect another of our great ironies.

  • buzzkillersmith

    Many people who need medical care are unable to pay for it, either directly or through insurance.  It was like that when I started seeing patients in 1984, and it is like that today.  I suspect it will continue.  America has two choices: pay for the medical care that these people need or let them suffer.  If you choose the former, pony up.  If the latter, don’t whine when bad things happen, maybe to one of your family members. If you don’t like it, get involved and change your society–or move to Canada, if they’ll take you.
    This is not a call for us doctors to make–it is your call, America. We each have one vote, just like you. Put a patient in front of most of us and pay us to take care of the patient, and we will.  Don’t pay us and we won’t, kind words and sympathetic gestures notwithstanding.

    • http://twitter.com/Hootsbudy John Ballard

      Whew! That’s cold-blooded.

      • buzzkillersmith

        Whadya expect? My name is buzzkiller.