The costs of care was far beyond her means

Mrs. Sandra Jackson knew that she was no Warren Buffet. She knew that she was no Bill Gates. Instead, Mrs. Jackson knew that she worked two jobs, 7 days a week to support her family. So, she hid her breast condition for a better time, another day. She would ask herself, which was more important: going to a doctor or buying her children dinner? For a true mother, the answer was easy, but the consequences were not.

Months passed and Mrs. Jackson worked harder. She was working against a clock which was hidden from her view and yet, somehow instinctively, she knew the time.  She came to the ER at the end of the last shift she ever worked.

She lifted her blouse and turned her head away, in shame. But I did not cringe, instead I delicately examined the breast which had the appearance of melted wax, disfigured by a flame. “Do you hurt?” I asked, knowing that pain may take many forms.

“Only my bones,” she said as a few tears escaped her proud eyes, cast upward trying to look beyond the room — trying to look back in time or into an alternate reality, anywhere but here, anywhere but now.

I had hoped that her bones were aching from the back-breaking labors she performed day in and day out for her family. I hoped that her pain was that of a worker-warrior, those who push themselves in ways that make the rest of us appear weak and flaccid. I hoped that her pain was anything other than what it was: metastatic breast cancer.

After I confirmed the diagnosis, we sat in silence. I had not told her anything that she hadn’t already known. But, what I said was much less important that what she had to say — the story leading up to that day. Mrs. Jackson told me of her struggles, her fears and her choices: big doctor’s offices with big bills to match, bad news that she could not afford to fight, and children whose own health and well-being depended on what she did or did not do in any given moment.

As she spoke, I entered her story with her and could feel her life as my own. I took off my white coat, and for a while, we were just two mothers, sitting together sharing a very difficult journey. In the end, I did not fault Mrs. Jackson for her choices — instead, I understood her plight. Some may have called her choices “poor” but, I called them “heroic” in a system that proved “poor” for someone whose financial status carried the same name. You see, Mrs. Jackson knew that she was no Warren Buffett. She knew that she was no Bill Gates.

However, Mrs. Jackson did know the cost of her illness … that it was far beyond her means. So, it costed her life.

This patient’s name and some minor details were changed to protect the privacy and identity of the patient.

Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.

The costs of care was far beyond her means

This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.

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  • KrisMurphyBlountCountyAL

    As Monica’s husband, I’m proud of her work and in particular this story. While not related directly to our end-of-life education efforts, clearly this is relevant to an end-of-life scenario which was NOT ACCEPTABLE.

    We happen to be fiscally conservative, Christian, Republicans living in Alabama…but this story flies in the face of the opposition to expanding health care coverage to ALL Americans.

    While the rollout of the ACA / “Obamacare” has been a PR disaster, the goal of providing ALL Americans with some sort of basic health care insurance…that goal…is laudable, even if the execution and effects on some have been negative. And as this story specifically proves, that even those who DO THEIR BEST…WHO WORK HARD…CAN FALL THROUGH THE GAPS IN OUR HEALTHCARE SYSTEM.

    This poor lady did her best to provide for her family. She worked TWO JOBS and still was not provided insurance, nor could she afford it, nor could she qualify for Medicaid.

    As Christians (and as all world religions teach) we believe in the clear direction to care for the sick & poor around us. The problem comes when we try to figure out how to pay for it. Ideally all of that help should come through Churches and faith sponsored & secular charities, but it doesn’t. The Federal and State governments have stepped in to meet the needs…and government is not known for its deft management nor cost efficiencies. So we need to find a solution.

    People of good will from BOTH sides of the political spectrum (and all religious and non-religious affiliations) need to agree on the need to find a solution which provides healthcare for all those who need it…while requiring those who are able bodied to contribute to society…the society which is prepared to assist them.

    May this story motivate those leaders of ours who are sincere, to join in the effort to find a better solution to this LIFE AND DEATH SITUATION! The cost of care should not ultimately cost a life

  • Lisa

    As an agnostic, all I can say God help me if I ever have to depend on a church for help with medical care. I’d rather depend on the government.

    • John C. Key MD

      Where did that come from? Did the essay mention a church, or denial of contributions for care from a church of any type? Or is it just a gratuitous slap at religion in general?

      Was the patient denied medical care at an earlier stage? I doubt it…many people create their own catastrophic delays in care. In decades of practicing surgery I have seen many advanced breast cancers, most in insured individuals. I’ve also seen and treated many in poverty as well, none of which were denied care at any stage of their cancer. I recall one young woman with inflammatory carcinoma of the breast whose entire medical care and expenses were paid by her church (I did not charge her).

      While lack of a good financial picture may make obtaining medical care challenging, it does not make it impossible or even unlikely. Similarly, the availability of medical insurance, private or government in origin, does not guarantee good care or happy endings.

      • Lisa

        It was in response to the author’s husband response to the article:

        “As Christians (and as all world religions teach) we believe in the clear direction to care for the sick & poor around us. The problem comes when we try to figure out how to pay for it. Ideally all of that help should come through Churches and faith sponsored & secular charities, but it doesn’t. The Federal and State governments have stepped in to meet the needs…and government is not known for its deft management nor cost efficiencies. So we need to find a solution.”

        Breast cancer was probably not the best illustration the author could have used as there are federal programs that provide medical coverage for poor women who have been diagnosed with breast cancer. What if she had used the case of someone who needed a hip replacement and couldn’t get it due to the lack of insurance? I needed a hip replacement, had good insurance and had no problem getting the replacement. Without the replacement, I suspect I would have wound up in wheel chair as I had AVN and the ball of my femur was collapsing. I am not poor, but couldn’t have afforded the cost of a hip replacement in the US without the insurance provided by my employer. Maybe I could have gone to Belgium or India for surgery. I know people without insurance who have taken that route, but I don’t know of anyone who has gotten a hip replacement paid for through charity.

        I don’t think insurance guarantee’s good care or happy endings, but it does make it a lot easier to find good care and it makes happy endings more likely.

        • John C. Key MD

          Thank you. My wife just had a total hip last week due to AVN. And yes, we were very happy to have insurance. I’m not belittling that.

          • Lisa

            I hope your wife is having a easy recovery.

            I’ve actually had both hips replaced – the second was due to OA (5 years after the first) so it wasn’t as urgent as the first one, with AVN. I am thrilled with results! I am back to climbing and hiking and can do anything I want but run.

      • Kristy Sokoloski

        While lack of a good financial picture may make obtaining medical care challenging, it does not make it impossible or even unlikely. ”

        Dr. Key,

        Interesting statement that you made. Please explain to me then how it is that so many are not able to get the care they may need? And that includes even for a “benign” illness. There are a lot of people that end up where they do because of their situation financially because of circumstances beyond their control. And that includes many who have insurance. The reason? Because they can’t afford the copays and coninsurance that is required by their insurance for the care that they received. That’s good that you were able to help the young woman that you did. I don’t know of too many churches nowadays that can afford to help someone pay for the cost of their medical treatment due to the economic situation as it is at the present time. I know that if I had a situation where if I had to ask the congregation where I worship to help with costs of my medical care for any reason they would not be able to afford to do that. And even if they could, and then tried to help others as well in a situation like this young woman the congregation would struggle to stay afloat financially. And in turn would not be able to pay for the other expenses necessary to keeping the congregation going.

        I am sorry that you think that many people create their own catastrophic delays in care. And the reason that I am sorry that you feel this way is because there are so many that would say otherwise. The reason? Because they know their situation financially and otherwise better than anyone else.

        • John C. Key MD

          All communities are different, perhaps I have been blessed to be in ones that are more generous. But those of you who see the government putting on a white hat and riding to rescue the distressed are in for disappointment. Just like the current ACA, government provides a great bureaucracy but leaves little for patient and provider.

          • Kristy Sokoloski

            Dr. Keys,

            My insurance coverage is through the federal government for my entire life (yep, long before the ACA came in to being) and I have not had any problems with getting care. If you would like to know more about my particular situation please let me know and I will be glad to give you my e-mail address and we can discuss it in further detail away from the blog.

  • PCPMD

    People voluntarily pay a higher cost for what they perceive is a higher value. For those who are willing to pay for it (the vast majority of the country), we have better access to most/all care compared to the rest of the world. Clearly, some believe this access is worth the cost. They also have better healthcare outcomes than most other people in the world, adjusted for age and comorbidities.

    Your strategy is to then take money from them by force, b/c in your belief, they are not spending it “correctly”, in order to pay for the wants of others, who you deem more worthy. You also fail to acknowledge that this forced redistribution of wealth will degrade the quality of care that the formerly happily insured individual could acquire (either because they can no longer afford it, or because the quality of the care they can purchase has been heavily diluted in order to make it “affordable” for the subsidized poor). I’m pretty sure there’s a name for that political system…

    • Lisa

      I am sure poor people would be willing to pay for medical care if they had the money. Also, health care is not a want, it is a need and the only way to make it somewhat equitable is to have single payer health care. If is socialism and that means taxing people I am fine with that.

      • PCPMD

        That healthcare is a need is your opinion. What is a fact, is that air, water and food are the only needs humans have. Somehow, for 200,000 years, humans survived and thrived just fine without healthcare. So no, it’s not a need in any objective sense of the word. Its a want. It makes life more pleasant, and more abundant, but is not necessary for life to exist.

        Further, I will posit that however you contort the word “need”, regular exercise, healthy moderated eating, and the avoidance of vice (tobacco and alcohol) are fare more vital to maintaining health and longevity than “health care”. Its an absolute fact that forcing people to maintain a desired weight, exercise regularly (and avoid tobacco and alcohol) will yield far more tangible benefits in terms of reduced deaths, longer life-spans and cost absolutely nothing.

        Are you willing to say that exercise, a healthy diet, and the avoidance of vices are “needs” that must be mandated by society, at the point of a gun if necessary? If not, why not? It serves the purpose you seem to want (better health for the poor) at far lower cost. If you don’t believe a forced healthy lifestyle is just, then why are you ok with forcing some, at the point of a gun, to pay for the healthcare of others, which is a far less effective and efficient means of ensuring health and wellness?

        • Lisa

          1) People have always have medical care – not as medical care as we know it now but that does not mean there was no medical care.

          2) I don’t think you can mandate exercise, diet or the avoidance. It just doesn’t work.

          3) I think paying taxes is part of living in society. I pay taxes for all sorts of things that I don’t support and that is just the way it is. There are things that I think should be supported through taxes – roads, education, health care, parks.

    • http://onhealthtech.blogspot.com Margalit Gur-Arie

      We take money from people by force to pay for wants of others all day every day. It’s called democracy. Why is health care different than say, tanks, NSA datacenters, drones, corn subsidies, bailouts, First Lady’s vacations, etc. etc. etc.

      • PCPMD

        1) Tanks = national defense = necessary function of any government.

        2) Everything else – an excellent example of what’s wrong with wanting government to solve everything. I think we’re in agreement that all of those programs should be eliminated. I also believe they will continue as long as we worship at the alter of big-government as the solution to all of life’s problems.

        • http://onhealthtech.blogspot.com Margalit Gur-Arie

          Not all tanks are for national defense :-)
          http://www.foxnews.com/politics/2013/04/28/army-says-no-to-more-tanks-but-congress-insists/

          I want good government. Don’t really care if it’s big or small.

          • PCPMD

            That’s where the real divide is. You believe a government can be large, complex, all-powerful and yet remain benevolent. I see it as a necessary evil, primarily to provide for national defense, and maybe a few other tasks that cannot be done individually or privately. Giving it power beyond that allows it to encroach on the freedoms of the citizenry.

            “A government big enough to give you everything you want, is big enough to take away everything you have”. Many of the egregious infractions on individual freedom you listed, including NSA snooping, data-centers, IRA scandal, extraordinary rendition, secret detention centers, drone attacks, eminent domain, etc. exist b/c we’ve funded a large, complex and powerful government bureaucracy, all the while assuming it will remain benevolent indefinitely. I choose to not be so trusting, and I believe history and recent events prove my point. I believe in the individual’s right to choose their own path in life, contribute voluntarily towards the betterment of others, and expect to receive only what they can earn, or obtain through the charity of their family and community.

  • Kristy Sokoloski

    And unfortunately, many more people are choosing to make the decision not to treat a cancer diagnosis even in spite of the prognosis. It is too cost prohibitive. Even if you have health insurance which is supposed to cover a good sized (although I realize this is shrinking for many people as the years and time continues to go by) portion of the cost of the care the cost sharing that is the patient’s portion is also problematic. Fifteen to twenty percent or more for the patient’s part is still a lot. And if you don’t have the financial means to pay those costs then there’s big trouble coming. The trouble? That if you don’t pay your portion after the insurance pays theirs the doctor’s office can refuse to continue to see you until that cost is paid. And for some people the cost of their portion of the cost sharing is never paid which means that when the doctor lets them go because they can’t pay (and yes, I am talking about those that try to work out payment plans but still can’t afford to make the payment due to their financial situation) then no treatment for them. And then of course if they don’t get treated (regardless of what reason it was that made them choose not to treat) they die. People who make the choice to not treat cancer because of said costs are looked down on as those that don’t care about their health or for whatever other reason they are looked down on that would make it seem like it is not normal. Not a normal part of society for this country because as has been said in other blog entries over the last several years so many in this country are afraid of death and dying. It’s doing everything at all cost to try and keep the person alive. But how do we help those that make the choice to want to treat their cancer (regardless of the reason for their choice) or other chronic illness for that matter that may have health insurance, but still can’t afford to pay the copays and coinsurance that come with that said treatment so that they get the help they need? Some people truly can’t afford to get to a doctor for regular care. And regardless of what some may think of the healthcare law it has been said (and don’t know how true this is) that there will still be people that can’t access healthcare at all even if they have health insurance. This is why it concerns me when it comes to some of the discussion about the issue of Primary Care and what others think is a good idea for trying to help save Primary Care. I understand why some think that going to Direct Care or Conceirge care is a good idea, but there are going to be a lot of people that are going to lose out on being able to access a doctor because they won’t be able to afford the costs set out by the practice. I know that some have the idea that a lot of people have what is classified as “luxury” expenses and that is true for some. However, that is not the case for all. And it’s these ones that do not have a luxury expense that will have the most problems trying to get care from a doctor due to their financial state. Many of them being in extreme poverty. It’s too bad that people have to make the decision not to treat the cancer diagnosis or other kinds of chronic illnesses because they just can’t afford it. And for these people in this situation it doesn’t matter whether they have insurance or not. They truly can’t afford it. So how do we help them so that they can get the care they need without it being a burden to their financial situation? I wish I knew the answer to this one, and unfortunately there is no one simple solution to the problem. I truly wish there was.

    • Lisa

      I see a lot of fund raising web sites and local fund raising efforts. People shouldn’t have to beg for to get medical care.

      There is a solution, but conservatives won’t go there – single payer, tax funded health care. This is a proper role for government, imo.

      • Kristy Sokoloski

        Lisa,

        I agree with you that people should not have to beg to get medical care. Unfortunately, there are some people even in spite of their financial situation can’t make use of the help from fund raising websites because their finances don’t allow them to be able to access it either because they are over the number that is considered qualified for the help, or they don’t make enough. It’s crazy.

        I agree there’s a solution. There’s a blog entry that got posted on one of the other medical blogs about the Primary Care health system in Sweden. It was interesting reading and I expect it to soon be posted over here for the readers.

  • querywoman

    Many lower income people who work hard know they cannot be turned away at the emergency room. The cost of medical care was only one issue with her. She was in a work trap, working seven days a week at two jobs.

    This was the only life she knew. It’s hard to escape from that. I used to work, constantly ill, and wonder if one day I would just pass out and be carted out. I did not have children at home to support either.
    No one could make her go to the doctor.
    I assume she died young and left minor children.

  • Victoria

    Luckily I live in the UK and we have the National Health Service. It isn’t perfect but it is a right that includes all British citizens.

  • querywoman

    You say your husband is semi-disabled. Do you know anything about living without money? You sound like a responsible person who has always worked.
    I come form a blue collar family that always worked. It’s always been very hard for me to get a job, but I couldn’t get rid of them once I got them. I had health problems.
    I went to work in public welfare in the early 1990s and left in the early 2000s.
    I discovered, shortly after I went there, that there are all kinds of social programs to help people in trouble. This was toward the end of the 1st Pres. Bush’s recession toward the end of his 8-year term, preceded by Reagan’s 8-year term.
    I found that there all kinds of programs to help people, in spite of what I had heard for 16 years about “cutting welfare.” Republicans don’t necessarily oppose social services; they prefer block grants to the state.
    Even in chinchy Texas, I could find an answer for almost any social need except adult dental.
    I often found that higher income people who had bottomed out could handling asking for help more easily than middle income people. A lot of times people with money got it through risk taking. Of course, most of the poor know how to ask and and whine for more.
    Sometimes I’ve thought of staying a night in a homeless shelter without any ID and finding out what it’s like. For me, I’ve rejected the need to do that.
    Survival matters more than paying the bills! That’s something very important that I learned.
    I already posted something on hre about how this woman’s delayed medical care request was not just due to fear of medical bills.
    Some people just hate it here when I mention working in welfare. I’ve seen lots of “situations.” I’ve seen lots of parents with terminal illnesses trying to provide for their children before they die, like getting the children quality medical care for their own illnesses.
    This woman could only see the immediate, not being able to feed her kids’ dinner. Was she thinking about what would happen if she died? Surely a little, but not enough. She was too lost in the now.
    I feel confident that she probably knew it was breast cancer and that she was dying from the way the doctor described her case.

  • Lisa

    And how do you determine chooses not to work? We do not have guaranteed employment in this country and the last I heard it can be very difficult to find employment. I know I am being a bit sarcastic, but I really think the last thing this country wants/needs is a board that determines if you are choosing not to work or not finding a job despite your best efforts.

    • KrisMurphyBlountCountyAL

      You have heard of the WPA? Bottom line is to get GOP support (and a lot of it could be gotten), the issue of “freeloaders” MUST be addressed. The GOP will NEVER support expanded entitlements without reforms…work requirements, etc.

      • Lisa

        I’ve hiked on many trails constructed by the WPA.

        I think the a new WPA would be a great idea. But one problem with the WPA is that it didn’t include any training. I’d like to see a combination WPA/job training program.

  • Rginsberg2

    Short, poignant, instructive. Great piece! Some day, we will succeed in changing this disastrous situation of unaffordability.

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