The KHIT Blog: "Medical kidnapping?"

Tuesday, August 20, 2019

"Medical kidnapping?"

Is this necessary and ethical?

An Oregon court is ordering that a 13-year-old girl with a rare liver cancer have surgery and receive other medical treatment despite the objections of her mother.

The battle over Kylee Dixon's treatment began after her mother, Christina Dixon, halted a doctor-prescribed regimen to instead pursue alternative medicine such as CBD oil and vitamins, NBC affiliate KGW8 in Portland reported.

Dixon has said that after Kylee went through six months of chemotherapy, she could no longer watch her daughter suffer...

As the permanently heartbroken father of two girls lost to cancer, this story grabs me pretty acutely.

What do you think?

I assume the governing case law is pretty clear most everywhere. A minor is not the parents' "property," and has no independent legal "free will" to grant or withhold "informed consent." Broadly, it is uncontroversial that the state can intervene to prevent or mitigate "child neglect / abuse." Where that authority extends to mandating major surgery or other acute tx measures is something regarding which many people will disagree.

Tough situation, this one.

SPEAKING OF CANCER TX

WHY A PROMISING, POTENT CANCER THERAPY ISN'T USED IN THE US

Carbon ion therapy. Like traditional radiation, carbon ion therapy damages the DNA of fast-growing cancer cells, ultimately destroying them. But unlike older forms of radiation, this technique causes minimal harm to normal tissue. It also works against tumors that are resistant to X-ray treatment, and studies suggest it triggers an immune response against cancer.

Globally, carbon ion therapy is viewed as the next horizon of cancer care. About 22,000 patients have received the treatment at 13 centers in Germany, Austria, Italy, Japan, and China. More locations are under development in South Korea, Taiwan, and France.

Yet the therapy has followed an odd trajectory in the US. Although it was developed in California in 1975 and early research pointed to its advantages, not a single carbon ion facility, not even a research-oriented one, exists in the US. Other countries invested public money in the technology, but so far, American proponents of carbon ions have been unable to garner federal construction money or sufficient private backing…

From WIRED. Good article.

ERRATUM: My latest read.

Totally fine. Just finished. Yes, "living" entities emerged from inert matter (albeit "CHNOPS" organic elements at root), and, while based in physics, organic life is evolving stochastically beyond it, in increasing complexity (to include "cultural evolution").

We cannot mathematize the specific evolution of the biosphere. We can, at best, seek statistical laws about distributions of aspects of this evolution. In short, I will claim that no law at all entails the becoming of the biosphere; and that therefore, we cannot reduce biology to physics. The world is not a machine.

Kauffman, Stuart A.. A World Beyond Physics (p. 112). Oxford University Press. Kindle Edition.

TWO UPCOMING TITLES

Are we trapped? Got onto the Robson book via a Science Magazine review, and the forthcoming Markovits book through an Atlantic article. These two will be of interest to me in regard to any additional light they might shed on my episodic riffs on cognition and "scientific thinking."
_____________

More to come...

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Brave New Health

Commonwell Health Alliance

Another important read (pdf)

I love this kind of stuff. It sustains and humbles me. "As politicians, advertisers, salesmen, and propagandists for various political, economic, moral, religious, psychic, environmental, dietary, and artistic doctrinaire positions know only too well, fallible human minds are easily tricked, by clever verbiage... Common language—or at least, the English language—has an almost universal tendency to disguise epistemological statements by putting them into a grammatical form which suggests to the unwary an ontological statement. A major source of error in current probability theory arises from an unthinking failure to perceive this."

Quotes

"An economist is a person who sees something that works in practice and tries to figure out whether it will work in theory."

- J.D. Kleinke, medical economist
___

"The only person who enjoys change is a baby with a wet diaper."

"Every misspent dollar in our health care system is part of somebody's paycheck.

- Brent James, M.D., M.Stat

“We could do healthcare, at markedly higher quality, for everyone in this country, without rationing or denying anybody the care that they need, without having the government dictate how doctors practice or whether hospitals could expand, at half the cost we do it now.”

- Health Care Futurist Joe Flower

Most of the sciences, unlike parts of medical science, are not concerned with the impossible. There is not complementary and alternative physics, or chemistry, or biochemistry, or engineering. These disciplines compare their ideas against reality, and, if the ideas are found wanting, abandoned."

- Mark A. Crislip, MD

"Q: How much alcohol is too much?
A: More than your doctor drinks."

- a physician I once heard speak during a CME presentation

“Just because science doesn’t know everything, doesn’t mean you get to fill in the gaps with whatever fairy tale most appeals to you.”

- Dara O’Briain

'[I]t is one small step from using the computer for "helping" doctors to monitoring them, judging them, dictating to them what to do, and withdrawing payment for computer non-compliance. The use of computer data is a multi-edged sword. It can be used for the "good," facilitating diagnosis and treatment and making it more accurate and up-to-date, and for “evil,” invading privacy, inviting security breechs, and making decisions based on the opinions of remote authorities rather than those present at the patient-doctor encounter.'

- Richard Reece, MD

“[T]here ARE statistics which are non-political. Just because The Washington Post/Fox News reports the temperature is 75 degrees doesn’t mean it’s really snowing and sunscreen is a liberal/conservative plot. Even if you earn a living being ideological.”

- Michael L. Millenson

"It is a generally a fairly convincing argument that people shouldn’t have to be subsidized to undertake a change which is in their best interest.

The reconciliation seems to be that EHR is not supposed to make a doctor’s practice more efficient and higher quality. It is supposed to make the system of care more efficient and higher quality, which is not the same thing. Those of you who took calc recall that maximizing the total of variables is not achieved by maximizing any one variable and this is a perfect example of that.

Those of you have served in combat certainly noticed that too — if everyone works as a team the unit takes fewer casualties. If you try to save your own hide, you might, but at the expense of more casualties overall."

- Al Lewis

"There are two ideas to keep in mind about Bayesian reasoning and how we tend to mess it up. The first is that base rates matter, even in the presence of evidence about the case at hand. This is often not intuitively obvious. The second is that intuitive impressions of the diagnosticity of evidence are often exaggerated."

- Daniel Kahneman, "Thinking, Fast and Slow"

"Physicians apply advanced scientific knowledge, but they must do so without the favorable conditions that experimental scientists create for themselves. Multitasking is forced on physicians, often in chaotic environments and under severe time and resource constraints."

- Lawrence and Lincoln Weed, "Medicine in Denial"

"It’s time to stop the whining about Obama care and acknowledge we already have universal health care. We just pay for it in the stupidest way possible that ensures problems are that much more disastrous and complicated when they’re finally treated."

- Mark Hoofnagle, MD, PhD

"Every act of conscious learning requires the willingness to suffer an injury to one's self-esteem. That is why young children, before they are aware of their own self-importance, learn so easily."

- Thomas Szasz, MD
___

"Of course, one reason that process metrics* are so popular is that processes are much easier to define and measure than outcomes."

- The Skeptical Scalpel
___

"There is an “illusion of validity” for any random data point, a seductive sense that is colored by what we hope will be true. Mountains of pharmaceutical claims are often made from mere molehills of data."

- Danielle Ofri, MD
___

"Joy empowers people. It is a source of energy that enables people to hope and plan and change their lives for the better. Spend some time around someone who is relentlessly negative and how do you feel–drained, right? More and more research shows that joy is not something that just happens to you, like a bolt of lightening out of the blue. Joy is, instead, a habit to cultivate. Negative thinking and despair are the crabgrass of our souls–weeds that take root and spread, sometimes to all areas of life. Joy, in contrast, is a soul’s rose–hardy when cared for, able to put down roots over time and withstand disease and extremes. Like a rose, however, your joy can become blighted from neglect or harsh conditions. We all need to tend to our joy–to prune away the badness, and to know that, even though it may look like a prickly bare root, if you invest time in a joyous outlook, gorgeous things will bloom, even in the harshest conditions."

- Dr. Jan Gurley
___

"'Solutions' exist only in mathematics."

- Karen Martin
___

"The issue of how to regulate clinical software is, in the long run, indistinguishable from the issue of how to regulate medicine. The only difference is that medicine is practiced in the open, without secrecy, subject to peer review, and under a merit-based state license."

- Adrian Gropper, MD
___

"Economist, rope, tree: some assembly required."

- Source unknown

DISCLAIMER:

I write this blog wholly on my own time and my own dime. The views proffered are expressly my own as a concerned and active citizen/taxpayer (in addition to being the result of my substantive experience in the various IT fields), and in no way reflect any policy views of my former employer, notwithstanding that some of the thinking has indeed obviously been spurred by the implications of the work with which I have been doing for them.

FAIR USE POLICY
I cite a ton of news and web sources spanning the breadth of relevant technical and policy domains, sometimes at substantial length. I believe I remain well within the bounds of "Fair Use," as [1] I am not doing any of this for profit, [2] I always provide attribution and links -- which, [3] far from negatively impacting any copyright holders' commercial interests, might actually increase traffic to and interest in their offerings.

Nonetheless, should I post anything of yours regarding which you have any objection, just let me know and I will remove it forthwith.

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Tuesday, August 20, 2019

"Medical kidnapping?"

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