I put off writing this post until the very last minute. It isn't the very last minute, but perhaps you get my meaning. Discussing health care and the idea of rationing and the explosive medical costs involved - how to make decisions and whether those decisions should be in the hands of individuals, doctors, insurance companies, or healthcare organizations, or (gasp) politicians through legislation - suffice it to say, this is no easy topic.
The cream that rises to the top in discussions of health care and reduction of costs has produced a lot of incendiary dog whistles, especially in the last couple of years.
However, I'm not going to write up a wonkish post on how many points of view there are on healthcare and "rationing". This is a kind of "dark-of-the-night" musing on how we think about the future, health care reform or not, how we determine our own level of care, the extent to which we want care, and for how long, and how much we can, as a society, afford it for all. We are heading into an uncharted monster forest, where our population over 65 years old, the demographic requiring the most in medical care, will approximately double in the next 15 to 20 years. We do not have the resources or infrastructure to deal with this population shift.
Demographic trends in the health workforce will mirror many of the trends in the overall population. In many health care occupations, there are a significant number of baby boomers that will retire just as demand for their services is increasing. This is especially true in nursing. An emerging nursing shortage is likely to be exacerbated starting in approximately 2010 as a large portion of the nurse workforce nears retirement.
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Of those physicians under 65 years of age in the AMA MasterFile in 1999, 18.9 percent were under age 35, 32.4 percent were age 35-44, 31 percent were age 45-54, and 17.8 percent were age 55-64... Specialties with a high percentage of physicians nearing retirement are especially vulnerable to a rapid decrease in number of active physicians.
Changing Demographics and the Implications for Physicians, Nurses, and Other Health Workers
What defines the issue of rationing? Is it distilling and reducing health care in certain areas to cut down on the use of predetermined and statistically proven "unnecessary" procedures, regardless of the age or health status of the patient? I italicize unnecessary because it can certainly be a subjective determination, depending on which side of the fence you stand as patient, provider, or insurance administrator.
Is it limiting expensive tests and scans that appear to provide no benefit to extending the quality or length of life in terminal patients? Is healthcare rationing about denying care to the poor and those who have no voice in the crowd of lobbyists?
Is it rationing when an insurance company refuses to cover a pre-existing condition, or charges a cost too high for such?
Or is rationing what we already do, as our industrialized and wealthy nation turns a blind eye to the growing numbers who are uninsured or underinsured?
Is it rationing if we consider discussing the reduction of extraordinary measures that keep a premature infant alive when they are not medically viable at birth, and said procedures for that infant may lead to a life of considerable disability and constant medical care over time?
Is it rationing if the topic is end-of-life care and whether excessive tests and scans should be ordered for an elderly patient who has no hope of improving quality of life, or for a terminal patient who is experiencing complications that can temporarily be relieved during the inevitable slide to death?
I recently cared for a man in his late 30s whose heart failure, a result of severe coronary disease, had progressed to the point where his kidneys had nearly stopped working. Michael spent most of his days sitting in a chair, head resting on his palm, unable to complete a sentence because of shortness of breath. Intravenous drugs dripped into catheters in his arms, which were so waterlogged that a hospital ID band dug a deep furrow into his wrist.
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...A few days later I got a call at 6:45 in the morning from the microbiology lab telling me that blood cultures, drawn while Michael was in the E.R., were positive for a particularly virulent bacteria. Did I want to prescribe antibiotics to treat the underlying infection? Or simply tell the hospice nurse to alleviate any fevers with Tylenol and ice packs?
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So, after consulting with Michael and his family, I ended up ordering an IV antibiotic. But then an infectious-disease specialist told me it wasn’t safe to administer the drug without drawing blood for certain tests — an electrolyte panel, a complete blood count and a drug level — at least once a week. At first I resisted. Wasn’t this something to
be avoided? But in the end I acquiesced, convincing myself that giving the drug without proper monitoring might lead to greater discomfort.
(full article - Between Comfort and Care, a Blurry Line)
Is it rationing if Medicare or an insurance company denies advanced treatments like chemotherapy and radiation, or experimental drug trials to those who choose hospice when they are diagnosed as terminal?
The succinct answer to all questions above is yes. Which is why we have no response readily at hand when it comes time to debate the true merits of public options or single payer. This is a "yes" full of emotion, mixed with incomplete statistical data, stirred with anecdote, and topped off with the hoary implication of government intervention.
It shouldn't have to be pointed out that we already limit access to healthcare in this country. Even for the fully insured...
We underpay primary care doctors, relative to specialists, and they keep us stewing in waiting rooms while they try to see as many patients as possible. We don’t reimburse different specialists for time spent collaborating with one another, and many hard-to-diagnose conditions go untreated. We don’t pay nurses to counsel people on how
to improve their diets or remember to take their pills, and manageable cases of diabetes and heart disease become fatal.
Health Care Rationing Rhetoric Overlooks Reality
For the uninsured and underinsured, we do much worse.
In 2002, the Institute of Medicine (IOM) estimated that 18,000 Americans died in 2000 because they were uninsured. Since then, the number of uninsured has grown.
Based on the IOM's methodology and subsequent Census Bureau estimates of insurance coverage, 137,000 people died from 2000 through 2006 because they lacked health insurance, including 22,000 people in 2006.
Uninsured and Dying Because of It
The constraints of the two studies used to determine those statistics above hint that the mortality figures in reality are much higher for the uninsured in 2010. In the last four years, employers have dropped health coverage due to economics or by simply going out of business, individuals have halted COBRA payments and their own insurance payments because of the extraordinary monthly cost and percentage of income, and many insurance companies have introduced new benefits packages that no longer cover formerly insured procedures.
In my own case, I've fit into a couple of those questions at one time or another in my life. I went for a few years without medical insurance and incurred big debt and subsequently bankruptcy. I'm employed and insured now, but diagnosed as terminal, well, stage IV metastatic cancer. Imagine if my sequence of events were somewhat different - diagnosed with this stuff at a time when I had no insurance. Many of you are there and experience that singular and terrifying knowledge that without coverage, there is no option for any significant treatment, or quality of life extension.
I'm lucky.
I look down the road, or out into the future, and there are ethical questions I ask myself. In the last six months of chemotherapy, I've incurred somewhere in the neighborhood of $150,000 in treatments, tests, doctor bills, and hospital stays. I'm at a pause now in treatment. Decisions are being made, beyond my purview, of what course of treatment I embark on next. Surgery is one possibility. Surgery, where what remains of my right atrial tumor is resected and the wall of the atrium is repaired with bovine tissue. More chemo, another possibility. Maybe a combination of both - surgery first, chemo after, or more chemo, then surgery if the tumor I have appears to stabilize.
Or no surgery at all if the surgeon doesn't consider me an appropriate candidate, as I have cancer that has already sought another location beyond the cancer's primary growth.
Or no surgery if the insurance company decides the procedure is too experimental, with an unknown benefit towards guaranteeing me a significantly longer life.
Boiling down my options, I see the odds are against me either way. Surgery provides the chance to extend my life if it goes well. One patient with my kind of cancer has survived over ten years post surgery; another has been at this for over seven years, with two separate operations on his heart to remove the first tumor, then the second recurring mass two years later. Now he's at a third recurrence, with little or no surgical option due to the location of this most recent appearance of the sarcoma.
Other cardiac angiosarcoma patients who've had this surgery within the last ten years are out there, perhaps a baker's dozen at best. There are several who've had this surgery (of the few of us who've been diagnosed while living) and have achieved no better than their odds would have been without surgery, or without chemotherapy. Mean survival rates post-diagnosis are somewhere between 6 months and 14 months for most.
Not a cure.
Do I have a right to consider surgery? Is this a personal ethics question I should ask myself? Everything I've read and digested, from conversations with my oncologist, to discussions in cancer forums, to debates on the extraordinary costs and potential risks of heart surgery, seem to indicate the election of surgery is the "Hail Mary" pass to a blind receiver downfield who has his fingers taped up?
Am I thinking about this surgery as an option because the prospective diverging path is too hard to imagine? I imagine progressive and possibly rapid respiratory failure, the weakening of my heart both from chemo and from the tumor effects, the edema that is likely to return to my pericardium if chemo is not effective, or no longer an option because of the devastation chemo causes to the rest of my system. It's hard to breathe, it's hard to breathe, it's hard to breathe, and as of now, there's nothing particularly wrong with my lungs.
Today, I'm not sick. I can breathe, no issues, few pains beyond joint aches, no coughing up blood as I was during the summer of 2009. During this respite from chemo, I feel almost normal (except for the Nosferatu-like appearance in the mirror). It might now be easy to say, let's go ahead with this surgery, if you say so, doc. I can imagine a mental state where I delude myself that this will give me a chance; I will recover like no other. I will be cured.
Not a cure.
I can also imagine choosing to do nothing further, because right now I feel alright.
I live with an unrepentant and recidivistic murderer in a randomly chosen death row of cancer. A brain is a box and my square corners are draped with threadbare theatrical curtains flung aside whenever periodic daily health skits play out. I silently and mentally jump at every bone twinge, every odd-feeling contraction of my heart when I lay down at night.
I sympathized with President Clinton in his quest to remain normal, even supernormal, as he experienced those twinges in his heart last week. I know that when you have a "broken" heart, it's easy to let negative thoughts creep in. Act normal and look normal, but the susurrant mind queues "Is this the damned stuff starting again? Am I looking at the moment where things are going south, downhill, fatal again? What steps do I take, how do I place my foot so that my mental precipice doesn't crumble into an abyss?"
Back to that question, that last one - about choosing surgery. Do I have a right to surgery when the odds are so poor? Do I have a right to suck up more health dollars in a society where there is a high dollar amount on care? When the value of every human life in general is diminished because healthcare is not available to everyone?
About rationing. The question is, what do you think?
"Out, damn'd spot! out, I say!"
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Food for thought:
A Chance to Pick Hospice, and Still Hope to Live
Between Comfort and Care, a Blurry Line
In New York City, Two Versions of End-of-Life Care
Aging: Hospital Type May Play Role in Decision on Feeding Tubes