Doctor's making judgement calls based on behavior

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http://well.blogs.nytimes.com/2015/06/1 ... treatment/

This is an outrage. This could be my husband on a bad day.

Cliff note version...

Guy in this late 50s. Not married. Lives/lived with parents. Had a job.Sounds like parents helped him out in more ways of just giving him a roof over his head.

Diagnosis with leukemia. Only support system is elderly parents. No other people in his life.

Things ground to a halt after the man's parents died. Because the patient wasn't as articulate as the doctor liked, had no real support system, showed up in dirty clothes and gave minimal answers, the health care team pulled his chemotherapy pills. Their excuse was since he wasn't "good at communicating", amd they were worried he wasn't taking the pills correctly, all treatment was stopped.

Why? The guy was still showing up for his apointments.

He could be on the spectrum. He could be schizoid. Maybe mild brain damage. Supposedly a social worker (eye roll) and a psychiatrist (even bigger eye roll), sort of threw up their hands and shrugged. The man wasn't deemed psychotic, and with no money, not worth their while to explore beyond the basic psych assessment.

What kills me is how the doctor justifies his reasoning to stop treatment. Like no visiting nurse referal? No church outreach group to check one him? Because the man was not witty, not "clean", had trouble communicating, not married, no kids, relatives or friends, it's a huge SUCK TO BE YOU, DIE?

If this article doesn't make the hair stand up on the back of your neck, nothing will.

How many Aspies are in near shut down mode at a doctor's appointment? So now your doctor's decision on treatment is based on all the BS that goes into a job interview.

UGH.

Stuff like this makes me hate humans.

That is infuriating. They couldn't get a clear answer from him whether or not he was taking the correct amount of medication so they just stopped so he couldn't accidentally overdose? That sounds almost ok on the surface. Those drugs are toxic and overdose is a legit concern.

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How about a liver enzyme test? Weren't they doing those all along or did they just hand him the drugs and hope for the best? Most chemo drugs will cause at least transient elevated liver enzymes but a spike or scary upward trend could indicate he wasn't taking them correctly. They said they had social workers on the case (but what did they actually do?) so how about a visiting nurse coming by on a schedule to do status checks at home? Or draw blood at home for more frequent liver enzyme tests? It's not like they have to re-admit him to keep an eye on him. There are other options which it looks like they only half heartedly explored.

There are a lot of patients who are uncommunicative. Some of them have caretakers who can be i charge of the monitoring but not all. Just throwing up your hands and saying "we got nuthin'" is just unacceptable.

At least the comment section lambastes him. The odds are he'll read the comments since it's something he wrote and he's probably curious. Maybe then he'll re-think his position. Wanting to avoid an overdose is important. But giving nothing as your way of avoiding an overdose is unacceptable. If the patient can't adequately communicate how often they take the drugs, you find other ways to get that info: blood tests and/or outside supervision such as a visiting nurse.

What makes me so angry is my Aspie husband communicates in a similar fashion. He HATES small talk. Everything is yes/no. He doesn't give any extra information out.

There is a huge difference to my husband with these two questions..

"How are you spending your days? Are you as busy as you'd like to be?"

"We are worried you are depressed. Are you socially isolating? Are you having issues motivating to wash/feed/take your medication?"

Both of those questions are asking the exact same thing. My husband would have answered "fine" to the first one, even if he was horribly depressed. You might get more out of him with the second one because they are.specific questions.

So doctors use small talk to gather information, amd if you stink at small talk, you're screwed?

(back from my angry google searching)

The problem of non-compliance with outpatient chemo drugs has been studied.

[url=http://www.oncologypractice.com/index.php?id=62537&type=98&tx_ttnews[tt_news]=62105&cHash=da03e20e36]study on what to do if patient self reports are unreliable[/url]

The researchers give reasons why self reporting can be unreliable. This patient fits.

This patient ticks the boxes of comorbid conditions (probably- it's not like the blogging doc checked very hard) and lack of social support from living alone.

The researchers recommend withdrawing treatment in the above situations......
.......oh wait, they don't! because that would be horrible. They raise the suggestion I made of measuring liver enzymes and other things that can be measured in blood and urine. They then point out that those measures are only valid as a brief snapshot of the time the blood/urine was taken and not adequate information to monitor an ongoing situation. They bring up other ways that could work in this situation (I'm leaving out the ones unlikely to work in this specific situation).

1)monitor refills via the hospital pharmacy (although this wouldn't work if he just didn't take them but got a refill anyway or if he took them on the wrong schedule)

2)text message/phone call reminders to "take X medication now" (this would help only if he wants to/can use the technology and if he would follow that direction)

3)an electronic bottle cap on the medication


On the one hand, 99$ sounds expensive for a bottle cap. On the other hand, it's a lot less than the drugs themselves. It seems like the sort of thing the hospital could actually buy in bulk far cheaper although the researchers think it should be paid by insurance companies or the patients. The possibilities here are sufficiently intriguing that a way to make this more affordable seems important.

4)"nursing intervention"- that must be a visiting nurse


The researchers finish with this:



bolding mine and it bears repeating, "Clinicians cannot simply depend on self-reports or pill counts to identify non-adherent patients." Not that this guy even did pill counts, instead relying exclusively on patient self-report. Nowehere in the paper does it recommend withdrawing treatment because you don't know if the patient is compliant. That's not even supposed to be on the table.

You shouldn't be screwed because that shouldn't be the measure. It is with this bozo doctor but hopefully he's the exception not the norm. That's why I googled to find out what doctors are actually supposed to do if they can't figure out if a patient is taking the meds in the manner prescribed. Unsurprisingly, "withdraw treatment" is not one of the suggested options.

What is really upsetting, is he is a big deal oncologist at a big deal hospital, who had no issues writing about how he basically pulled the plug on a patient he was tired of dealing with.

I get the doctor thought this guy had no "upside". No money, no insurance, no wife or kids to raise hell. If this man was an adorable, 80 year old single woman, who was a delight to be around, and had no supports to take pills, would the doctor have done the same thing? I f*****g doubt that. Some nurse would have rallyed her church group, and magic would have happened. Grandma would have gotten some help.

Cleveland Clinic is a big deal cancer hospital. It's not like the low rent, human-step above PetCo's dog clinic hospital in my area. This s**t shouldn't happen at Cleveland Clinic. That place is what all other oncology hospitals shoot for carewise.

If I was a parent of an ASD child, this article would give me nightmares. How many other treatment options are never offered because a spectrum person is deemed too big PITA to deal with? We'll give the base line and nothing more since you make our jobs harder with your actions.

The saddest thing of all, is the oncologist writing the article and thinking he deserved a medal because of this wonderful decision he made. The only thing it showed is god f*****g help you if you have to go through a medical crisis alone with limited social and language skills.

Your post really hit home for me.

This is exactly the type of structural violence many ASD peopke face daily. And it's really all based on NT judgement calls. As if the past 300 years of brutality and violence of NTs wasn't proof enough that NTs aren't fit to judge anyonE !

These "big deal" doctors that attended the highest universities in the land, who are "highly educated", and supposedly enlightenef beyond us "lay people", throw their hands up and turn into medical death panels because the ASD patient isn't up to snuff, socially speaking. Because they don't play ball, have a wife and kids and the rest of that nonsense means they're left to die, like a poodle with kidney disease. Not worth investing in.

I agree with u.
Humans are less than dog turds.
And by many documented dcientific accounts, humans are the LEAST caring of all the apes, in the ape kingdom. Surprisingly, especially when it comes to infants. I can show you the documentation on this research if you wish.

Very sad.

I think of myself in these situations,
I know I wouldn't fare well.

I strongly suspect my mom was on the spectrum, and she had a somewhat distressing time with a cancer surgeon.

To be clear here it is likely she would have died even if the surgery was performed, so I'm not claiming anything except the surgeon did not make clear to her what was required instead he assumed anyone would know what he meant.

He had told her he would like to get a stress test done first and she said no she didn't want to go on a treadmill, then he said she could do mall walking to build up stamina and she said it looked too strenuous for her.

So on a next appointment he told her the surgery was off and good bye basically. She was shocked, she thought these things were suggestions not requirements. Also he told her she had a long and full life, she thought this meant he thought she was a good person he was going to help, not that he was telling her she was terminal. I just thought he should have directly told her either do this or no surgery, instead of dancing around it in vague language. Others told me anyone of normal intelligence would understand exactly what he meant, and if my mom had a condition it should have been told to him.

Also she had an almost impossible time getting pain meds, even though she had stage four cancer that was very painful and externally visible. I at one point told her to ask for pain meds point blank, she said the doctor told her in a scolding tone that these things "are addictive and illegal like marijuana" and she was shocked and angry at me for getting her in trouble with her doctor, she thought maybe the doctor would call the police with her mentioning illegal drugs. Eventually with my sister going with her and demanding pain meds she was RXed 15mg morphine tabs, that was all she ever got.

After she passed a family member even told me you know she was so funny, like she was naive or did not understand how the world works.

@TheSperg...

My heart just breaks reading about your mom. My husband is the same way. If a doctor doesn't lay it out in a linear fashion, and tell him "this is a requirement", it just baffles him.

The cancer surgeon was an a**hole. My husband would have been EXACTLY like your mom. He has migraines and his neurologist treats him like s**t. My husband can't be confrontational, so this guy is not aggressive with treating my husband's issues. I want to go ghetto on the doctor's ass, but as of now my husband doesn't want to upset the doctor.

WHY? THE GUY IS AN ASSHAT! And he isn't that good... (minor vent..lol)

Your mom sounded like a nice person. How horrible to see her suffer like that. And I know the surgery might have not helped...but that surgeon....UGH!
for you

Tawaki

It seems like someone needs to go to his house with the pills and watch him take the prescribed pills each day.

Sadly, that's how it works.

My dad was nearly killed by medical incompetence. Had loss of memory, mental capacity, etc. Went in for pre-physical for shoulder surgery, and the ANESTHESIOLOGIST was the one who recognized his carotid arteries were almost completely blocked. In 24 hours they were going in to fix them. Once blood flow was restored to the brain, he got back his faculties. The "doctors" ignored his complaints.

Later, he goes to have the blockages checked. They say he's good. Has a stroke a month or so later and a more precise test shows they are almost completely blocked. Eh? WHY DO YOU DO A TEST REPUTED TO BE UP TO 25% INACCURATE ON SOMEONE WITH A KNOWN HISTORY FOR BLOCKAGES? He needed the more precise test, but the medical system went with the cheaper (and less accurate) test.

He's getting bad, again, and something needs to be done surgically. Granted, at his age and condition, he might not survive another surgery, but it should be HIS choice as the alternative is ever diminishing capacity waiting for the issue to just outright kill him. I get that a doctor might not feel up to doing the surgery and promising any hope of surviving the procedure, but that's when you refer the patient to someone more skilled in dealing with complicated cases.

The medical profession (in the USA), by and large, ignores patients. You need to be your own advocate or have someone willing to fight so that you get proper care.