The dual tragedy of suffering catastrophic illness and being uninsured

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers. He was immediately admitted to undergo a procedure to identify the site of blockage and insert a plastic stent to drain bile externally. While awaiting the outcome, I had a premonition that the worst was yet to come. The doctors brought dreadful news that a massive tumor, too large to remove surgically, lay centrally in the liver. The remote possibility existed of a benign condition masquerading as cancer. The aggressive option was upfront chemotherapy and radiation to shrink the tumor, for possible surgery afterwards. But several surgeons deemed the case hopeless, and estimated my uncle had only 6 months to live. They recommended hospice, and a more comfortable internal metal stent. My family chose not to share these findings with my uncle until he recovered from anesthesia.

The crushing blows continued. Within 36 hours, my uncle lapsed into a coma from kidney failure induced by bile toxins. Knowing the costs, we refused transfer to the ICU. Dialysis was necessary, but the nephrologists regarded the situation futile and refused treatment, comforting us that dying from kidney failure was painless. Miraculously, he rallied. Seeing improvement, the nephrologists started dialysis. We could finally share with my uncle the difficult choices ahead.

He responded “It’s hopeless. Why risk money that could provide my daughters’ education?” He asked to be made “do not resuscitate”, and declined surgery. Two weeks of recuperation made transfer to less expensive skilled nursing care possible, but here I learned it takes money to save money. Ambulance transport was mandatory, costing $1700. As I read the dispatcher my credit card information, I wondered if I could have driven him myself.

In the following days, we tried everything to minimize costs. My uncle had a fever, but refused evaluation in the ER, and was treated with blankets and oral antibiotics. His fever broke, as did the stitches on his stent, which I re‐sutured at the bedside.

In the end, my uncle made the ultimate sacrifice for his daughters by rationing his care. Death came swiftly, only 72 days after he became jaundiced. He never received metal stents, or saw New Jersey again.

His final medical bills totaled over $250,000. Charity care was denied, and MediCal unavailable since he was from out of state. After receiving a 20% discount for paying in a lump sum and in cash, we negotiated a final 40% discount.

The costs of his care can be translated as follows. Each session of dialysis equaled a month of private college tuition. Each day’s blood work would have provided a year of textbooks. The daily hospital room charge would pay for a half‐year in the dormitory. The anesthesia fee would have purchased a full year’s meal plan.

My uncle’s cause of death remains unknown. Weeks into treatment, his tumor markers came back normal. Surgery might have been curative, or confirmed a hopeless situation. The cost to know with certainty would have consumed his inheritance. The World Health Organization recognizes this universal tragedy worldwide: “The poor are treated with less respect and given less choice of providers. In trying to buy health from their own pockets, they pay and become poorer.”

Whenever someone faults the medical system for the epidemic of bankruptcies, I ask instead: My uncle was 59, and for decades had contributed to the system by paying health insurance premiums while employed. Did the system treat him fairly when he needed care?

John Maa is Assistant Professor of Surgery, University of California, San Francisco.

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  • Anonymous

    A very sad story!

    We live in a global economy and were I in a similar position, I would fly the patient directly to San Jose, Costa Rica. Upon arrival, I would immediately check him into one of their private hospitals, all Joint Commission International (JCI) accredited. Most of the docs trained in Europe or the US. Of most impotrance, costs are around 20% of US levels. Hospitals are cleaner, 1/3rd of hospital accquired infection rates, and a much better nurse (RN) to patient ratio. To contrast, a day inpatient, with full nursing, is $400, not hardly 1/2 the US college college dorm cost.

    I spent 3 days touring the Costs Rican private facilities. I’d feel much safer there than in a, any name, US community hospital!

    • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

      Feel free. See if they want to resect that hepatic tumor.

      Doctors recommended hospice. Family went for dialysis anyway.

      If you’re in any UK or European medical utopia, you’re not going to be transferred across the continent just because a family member is an academic on the other side of the country. Your doctor says hospice, you are sure as hell NOT GETTING DIALYSIS, unless you pay for it at a private clinic.What would have happened across the pond would be their version of hospice………which is likely the best choice anyway.

      No insurance in the USA, you are found to have a hopeless, terminal condition…..as far as I know, you will get plugged into a hospice straight away if you choose it.

      This big medical bill was run up because the family wanted aggressive services, of little benefit; services that would not have been provided across the pond………and appropriately so.

  • http://pulse.yahoo.com/_GXO5UT3MGTPBRYKXHHFG6NCRO4 S

    So what’s the answer Dr Maa? A “socialized” system like Europe with rationing that controls costs? Maybe, but Americans would have to be on board with rationing, even if this is in a “rationale” way unlike the US .I have seen no evidence to support that proposition from the US population. See a politician bring up this important issue for discussion? No and there is an obvious reason for that too…. pandering to votes as opposed to a politician doing his job. Also, in many european countries your uncle very simply would have NEVER had dialysis….period.  
    Another issue Dr Maa is why was it a requirement for your uncle to come across the country? There are good hospitals in NJ that could have done the EXACT same thing. This would have resulted in likely access to NJ medicaid, depending on finances. Medi-Cal should not be expected to pay for it. Could it be because YOU are an academic surgeon at UCSF and wanted your unlce to get the “best care” (in your eyes). That is fine but accept the consequences of your decision. You must have known medical and NJ medicaid wasn’t going to cover these expenses. This country is not set up to have insurance agencies retroactively “cover” patients who were once on there roles. Is that what your are honestly proposing?

    • http://pulse.yahoo.com/_VM5ZKYTEEAO4KZZG23W3HL2ERQ marc

      Oh dear – what nonsense. In European countries this man would have received free and probably emergency care under national insurance. In the UK he would not have had to pay a cent. And what European countries would deny dialysis? Is this a right wing talking point you’ve picked up?  

      • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

        That’s too easy. Search “NHS rationing” and get buried with articles about that very subject in the UK press. Specifically dialysis. Look it up yourself.

        If there’s anyone oversensitive with “talking points”, it’s you and “niernews”. We’re likely too aggressive with dialysis. I’m with “S” on this one.

    • http://twitter.com/niernieuws Redactie NierNieuws
    • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

      ” This country is not set up to have insurance agencies retroactively “cover” patients who were once on there roles. Is that what your are honestly proposing?”

      Sometimes they actually pull that off. I had an uninsured person, barely getting by on odd jobs, walk in my office with a headache. The visual field cut and a hemineglect made me suspect there might maybe be something more to the headache.

      Neurosurgeons saw the patient without regard to insurance in the first place. Medicaid retroactive coverage and operated in about two days. Glioblastoma multiforme. She lived two years.

  • http://pulse.yahoo.com/_GXO5UT3MGTPBRYKXHHFG6NCRO4 S

    Really. I have spent significant time in europe with european (mainly English) doctors on a exchange program, I actually DO know what I am talking about. Do you?  Are you a European MD or just an editor talking about something you have done a few interviews/stories about?  Are you HONESTLY telling me a male with an inoperable liver tumor in which several tertiary center surgeons (per Dr Maa) have stated is incurable and recommended hospice would get dialysis? I have been around enough of these conversations on your side of the pond to already know this answer. 
    I have little doubt the US has the worst life expectancy in the west on dialysis. Think maybe it is because we in the US are dialyzing people we shouldnt be? Dear sir, you are acting insulted when honestly you have no reason to be. As a US MD who has spent time in Europe (and therefore I can make the contrast), I have found the US system extremely wasteful completing expensive inappropriate procedures in futile situations on a regular basis. All at the same time being way behind our european counterparts on the numbers of patients getting preventative healthcare. There is reason why 1/2 of our healthcare dollars go to 5% of the population mostly in the last 6 months of life. This is in a setting of a system (medicare) that is presently not financially viable in the intermediate-longterm. Europe has already answered this issue by “rationale” rationing in which procedures of dubious/questionable are not done. Your societies have had this debate and answered it, mine has not and given the lack of backbone in the political arena likely never will. I really do have to laugh when people like Marc insinute I am some type of “tea partier”. What I want is a simple national discussion of how best to spend finite dollars in a way that A: Supports EVIDENCE-BASED medicine to best benefit the patient. B: Allows long-term solvancy of a program that is at the brink of a financial abyss. All the US congress/president is doing is kicking the can down the road when it is still yet a bigger problem. To be apolitical, every US congress/president has been doing this as long as I have been in medicine.

    • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

      +1 what S said.

    • http://pulse.yahoo.com/_VM5ZKYTEEAO4KZZG23W3HL2ERQ marc

      So when you said ‘Also, in many european countries your uncle very simply would have NEVER had dialysis….period.’
      you meant this is as an advantage, right? 

      The truth though is that in the UK, where I live, many people do have dialysis as part of end of life care. 

    • http://twitter.com/niernieuws Redactie NierNieuws

      I originally reacted on your statement about dialysis (period!), not on the background of “uncle’s case”. 
      The essay does not provide enough information to diagnose whether dialysis, chemotherapy, an operation or whatever were viable options in uncle’s case. What it is all about is, that in Europe uncle would have been totally free in choosing any option mentioned in the article without the terrible burden of having to consider  the availability of enough money for his daughter’s study. Discussions about money should not be necessary when life is at stake. Health insurance for everybody should be part of every society where people really care about each other. We call that solidarity.

      • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

        Google “abuse of euthanasia Netherlands” and read of some of their other “solidarity”.

        • http://twitter.com/niernieuws Redactie NierNieuws

          Actually far more people suffer in Italy because they can not have euthanasia than people in The Netherlands who can. Sir. 
          [leaving discussion]

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

            Don’t let the door hit you on the way out.

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    “Please do not write about things you have no knowledge about whatsoever. ”    

    I read enough of the European press to know that your advice works both ways.

    Search “two-tier medicine” “ration medical care” in any language and find examples in the local press. Though I do agree the USA has lower dialysis life expectancy. It reflects more aggressive treatment here. And it’s probably too aggressive. I doubt a patient like the one described would even be considered for anything beyond hospice in most of Europe, as described by S above.

    One wonders if he should be considered for anything beyone hospice in the USA either.

    • http://twitter.com/niernieuws Redactie NierNieuws

      I originally reacted on your statement about dialysis (period!), not on the background of “uncle’s case”. This short essay does not provide enough information to diagnose whether dialysis, chemotherapy, an operation or whatever were viable options in uncle’s case. Where it is about is, that in Europe uncle would have been totally free in choosing any option mentioned in the article without the terrible burden of thinking about the money for his daughter’s study. 
      Discussions about money should not be necessary when life is at stake. Health insurance for everybody should be part of a society where people care about each other. We call that solidarity. 

  • Anonymous

    From the post: “He responded “It’s hopeless. Why risk money that could provide my daughters’ education?” He asked to be made “do not resuscitate”, and declined surgery.” I was struck how this man voluntarily rationed his care. How many of us or our families would make the same decision. It is irrelevant where he came from or where he was.

    If people insist on always bringing socialized medicine into the conversation, let’s do a thorough econmic analysis of the situation. Because this gentleman refused care, how much money, time, and resources did he save the system? If he or his family insisted on all tests, procedures, reviews, in the face of insurmountable odds of survival, how much would it have cost? Perhaps his decision to deny extra-ordinary care actually saved the system more than he cost. Maybe we should be sending the family a check for not using the health care system. Maybe we should checks to all people who have no insurance because they free up resources for those of us who do have health insurance to consume.

  • http://www.facebook.com/rfdbbb Robert Bowman

    This one hurts as my mom chose also this route for her pancreatic cancer. My brother in one of many hospitalizations before his cancer death had a very bad experience with a surgeon who assumed cancer as a cause and refused to cut, until forced to do so. And she found obstructed bowel without tumor and a patient relieved of suffering and her own situation saved.

    Medical students have poor coverage and are exposed. Physicians do have catastrophic illnesses and cannot practice – resulting in loss of insurance and some on Medicaid. At least one such physician has been vocal about the various cuts impacting millions – including those who need just a little help to tide them over to a recovery of life and practice.

    When calling members of a physician association to ask them to continue to be members, we were counseled to be open to their individual situation. It was wise counsel as many did have overwhelming health, family, or life situations. It was good to grant a gratis continuing membership but it was a sobering reminder of situations facing others just like me.