Author: Ann Marie Marciarille

She writes, of the fundamental unknowability of something you have not lived:

Before I was a mother, I was pretty sure what it entailed. It was boring, trivial, sentimental, stultifying, gross… The actual experience of motherhood scuttled my arrogant assumptions.  When my son was born, I crossed the divide and was permanently humbled. Now I look ahead to another rite of passage, and wonder what further education is coming.

 

 

The July 14, 2019 New York Times Sunday Magazine had a "The Ethicist" article concerning a letter from a reader puzzled by their urologist's refusal to offer a recommendation on the best way to treat their prostate cancer. The patient was, instead, urged to do their own online research and develop their own plan.

Interestingly, The Ethicist's answer leads with a long discussion of how physicians hate patients who think a Google search makes them an expert on a diagnosis.  I think The Ethicist answered the letter with a confusing and mis-conceived letter of his own.

Here is what I would have written, instead:

Your doctor appears to have taken the current encouragement of shared decision making in the health care context all the way to abdication of the physician role.  You need a different urologist.

The urologist's job was to learn enough about you to understand what questions you might have about the array of treatment (and non-treatment) choices before you for your diagnosis. The urologist's contribution should have included information on which are the most common treatment  and n0n-treatment plans, patterns of post-treatment feedback from patients, and a discussion of the risks attendant on each approach.

As you are by now no doubt aware, treatment (and non-treatment) for prostate cancer can affect sexual function. The risk of such an outcome may be difficult for some individuals to discuss kindly and rationally, which is why anyone who cannot perform this essential step should not be a urologist. Indeed, if "just Google it" was the urologist's best advice, you are entitled to a refund of any fees charged for this visit.

 

 

 

 

The fact that the single leading purpose of Go Fund Me campaigns has, sadly, become to fund health care or, even, health research. What a people we are that, though apparently immune to the pain of millions of Americans who lack health insurance or adequate health insurance, we are moved to fund one-off charitable campaigns for rare disease treatment and rare disease research.

Yes, it is much harder to ignore the desperate individual right in front of you. But, the last Democratic Presidential campaign debate had an odd moment where several of the candidates seemed to represent that expanding decent health care to all would be free of costs to all taxpayers.  And, then each would try to slip into an obviously well-crafted and well-rehearsed anecdote about an individual experiencing the cruel realities of our health care system.

Because, it is hard to ignore the individual suffering right in front of you.

Jill Lepore's friend, Jane, was diagnosed with an eventually fatal case of leukemia right about the time Jill, herself, became pregnant. Jill Lepore writes: 

She's found out she had leukemia right about when I started trying to get pregnant. Her cells divided. My cells divided. Our selves divided.

The power and poetry of those words and has stayed with me for weeks.

Buried deep within his New Yorker article on "New Blood" looking at what are popularly known as  cell therapies, Siddhartha Mukherjee finally notes that these cell therapies are genuinely expensive to produce."The estimated cost to manufacture a typical CAR-T infusion is close to six figures."  

This was Siddhartha Mukherjee's moment to discuss how the roll out of expensive but effective new drugs or therapies in the United States plays a significant role in our health care costs.

Did he turn and confront the ways that Medicare, Medicaid, and commercial insurance mount modest efforts (and, often, inconsistent efforts) to try to determine when a new product or treatment should be covered by insurance? No, he did not.

Next article, Mr. Mukherjee?

 

I spy several news reports today citing a limited scope study from the Journal of the American Osteopathic Association discussing what some Colorado anesthesiologists have observed about pain tolerance in disclosed cannabis users in the surgical context.  A few of these articles link to the newest guidelines of the American Society of Nurse Anesthetists discussing drug abuse and anesthesia.  It is worth noting that ASNA's new guidelines target those with substance abuse disorder. Is recreational use the same as drug abuse?

This is a very small study, mostly remarkable for what it says about the need to study cannabis use's effects on all sorts of health care outcomes, including surgical ones.  Such comprehensive research is  all but banned by the government, of course. The federal government acknowledges the severe administrative barriers to federal government authorized research on the health effects of marijuana use.

Given the stigma attached to illegal activity, how do we know any of the patient disclosed data produced, even in this small study, is accurate?  And, given the not unreasonable fear of a crack down on state experimentation with legalization of cannabis use, how many individuals want their history of cannabis use in medical records that could hardly be described as genuinely secure?

 

 

 

 

I am thinking of you today, Harry Truman, with gratitude.

 

 

By now you may have learned all about Missouri's new abortion bill that effectively bans all abortions after eight weeks of pregnancy. What the exception for medical emergency means is anybody's guess but it explicitly does not include rape or incest as within the definition of medical emergency.  Rumor is, Governor Pearson is planning to sign this into law in the coming week.

After Alabama's law banning all abortions at any stage of pregnancy, with exceptions only for a threat to a woman's life or lethal fetal condition, a number of states have been busy implementing variations on a theme.

It is the title that gets me.  Does Missouri stand for the unborn? By any calculation, wouldn't the top priority for the unborn be to have a mother alive?  And, yet, Missouri's maternal mortality continues to outpace even the mind-boggling rate of the overall United States.

We know of at least one recently arrested Kentucky physician who apparently prescribed opioids to Facebook friends who would then drop by his home to pick them up. If you saw that April announcement of arrests  from the work of the drug abuse task forces in Alabama, Kentucky, Ohio, Tennessee, and West Virginia, then you are already familiar with the lurid details of Tennessee's "Rock Doc" and the physician operated Ohio pill mill, allegedly dispensing 1.75 million opioid pills in a two year period.

If you were shocked, so was I. So should we all be. But were you also shocked that the drug abuse task force targets were all prescribers with no apparent focus on the actual physical dispensers such as pharmacists and drug companies, all of who have a duty to monitor extraordinarily high use.  But, maybe you weren't surprised if you know that most Americans appear to place the blame for the opioid epidemic on prescribers and not on others.

Personally, I see this problem as one with considerable complexity, involving the cooptation of all kinds of people: illegal consumers of opioids, consumers of opioids, the drug companies, prescribers of all sorts, pharmacists.  But offering complex answers is not in vogue.

 

 

 

One answer is you could get the threatening-to-spin-out-of-control Ebola outbreak in the Eastern Congo.

Another answer is you could get a threatening-to-spin-out-of-control measles outbreak in the United States.

I have written elsewhere about how cultural and political tensions surrounding infectious diseases are as much a first world as a developing world concern.