Tag Archives: ethics

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Ethical stupor

My friend M is twenty years older than me. A friend of my parents since college. When I went to college in Madison, WI, I got to know her and her husband and their two sons. I lived with them my third year of college and it was a ball! I loved the family.

I visited over the years and more often when her husband had lung cancer and died. She wanted me to come out for her younger son’s fiftieth birthday. Her daughter-in-law said, “It’s nice to meet the daughter.” Apparently M considered me a daughter. I was delighted, since both of my parents had died by then.

A year ago M was feeling less well. She started losing weight. A work up was done, finding no cause. She had a rare cancer that had been treated two years prior. But by July, she had lost thirty pounds.

Thirty pounds! As a primary care doctor, RED FLAG! Very high likelihood of dying, if that went on. She was eighty years old.

I flew out in September. We took a road trip, just the two of us, from Michigan back to Wisconsin. We visited multiple old friends of hers. She thanked me afterwards, because one friend had Parkinson’s and died ten days after our visit. We saw her sisters-in-law and we did a circuit around Madison.

Afterwards, she said that was her last time driving on highways.

By December, she had dropped another ten pounds. Then she had difficulty walking. The daughter-in-law called me. She was having trouble getting any medical attention. They had had trouble for a year! Over a week, M went from walking to not being able to support her weight or stand up. I flew up right after New Years.

Something was wrong, clearly. She’d carried her own bags in September. I was the out of state doctor. The daughter-in-law, B, was moving her from bed to chair alone. I couldn’t. I am 5’4″ and M was 5’10” and now my weight. B found a private practitioner.

On my third day there, M had chest pain. We took her to the Emergency Room. The Emergency Room did the usual things. Then the ER doctor came in. “She is not having a heart attack and she doesn’t have pulmonary emboli. So you can take her home.”

“No, something is wrong! She can’t walk! She could walk two weeks ago! We did a road trip in September!”

The ER doctor shrugged. “What do you expect me to do?”

“Figure out what is going on!”

“She is eighty.” he said. As if eighty meant we stop caring.

“No, we won’t take her home. It isn’t safe. We can’t move her. M, do you want to stay?”

“Yes,” said M.

The ER doctor looked annoyed. “All right. I’ll admit her for placement in a nursing home.”

The inpatient doctor was scarcely more interested.

“What do you expect me to do?” he said, knowing he was dealing with an annoying out of town doctor.

“Steroids.” I said, “Maybe it’s a weird form of polymyalgia rheumatica. She deserves a trial of steroids.”

He too shrugged, and started steroids.

The next day she was stronger, and the third day she could stand. It was SOMETHING, but not clearly polymyalgia rheumatica. The hospital was small and did not have a cancer doctor and did not have a neurologist. They were sending her out on steroids. Follow up outpatient.

We looked at a nursing home, but went to a private assisted living instead. The staff were minimally helpful. We took turns sleeping there. Physical therapy and occupational therapy were started. M was a bit better but not the miraculous return to normal that steroids cause in polymyalgia.

I flew home. The private physician saw her. M was set up to see the U of Michigan. B kept asking if it was lymphoma, because that can be a side effect of the treatment for M’s cancer. M’s cancer doctor said no. M got covid and the appointments were delayed two weeks.

In February she went to the U of Michigan. The neurologists came through and said, nope, not polymyalgia rheumatica, and not neurological. The cancer doctor came through. The GI doctors did an upper endoscopy and biopsied. Cancer. Lymphoma.

M said no to treatment. She was discharged to hospice. She died within 24 hours of reaching the hospice.

The cancer doctor sent an apology to B, who was right all along. This was a particular lymphoma that responds to steroids for a while. M had said that if it was another cancer, she would refuse treatment.

So what the hell is going on here? This: https://www.technologyreview.com/2019/08/21/238642/a-doctor-and-medical-ethicist-argues-life-after-75-is-not-worth-living/

“These people who live a vigorous life to 70, 80, 90 years of age—when I look at what those people “do,” almost all of it is what I classify as play. It’s not meaningful work. They’re riding motorcycles; they’re hiking. Which can all have value—don’t get me wrong. But if it’s the main thing in your life? Ummm, that’s not probably a meaningful life.”

Ok, so now some doctors don’t care once you reach 75. That’s it. They define everything as “useful and productive” and if you are not doing meaningful work, well, you’d might as well die. I hope that doctor does die. Slowly. And that everyone around him refuses to do any tests to see what is happening. And who the hell defines what is meaningful work? That can be helping raise grandchildren, like, hello!

I have another friend who is going through the same thing. She is failing and the medical community in my town is shrugging their shoulders. She should have a head MRI, says the cancer doctor. So that was a month ago and it still isn’t scheduled.

Some of this is pandemic fatigue and backlash. People refusing to get vaccinated, people refusing to believe that Covid-19 exists, doctors and nurses dying of Covid-19, people refusing masks. If everyone is exhausted, what do you let go?

Apparently people over 75. But NOT everyone over 75. If you are wealthy, you will get care. Our Senators and House of Representatives certainly get care after 75. It is the isolated, the rural, the poor, the ones who don’t have an advocate, who will be sent home to die.

I took my friend here to her primary. “What do you want me to do?” he says.

“Here is the Home Health paperwork and she needs disability tags.” My friend is falling, five times that week.

“Ok,” says the primary. “I will set those up.”

When Home Health arrived, she had fallen. She had been down for 15 minutes and unable to get up. Home Health called the fire department. The fire department helped and also came back to put no slip pads on the steps. If she can buy the wood, they will build a ramp for her.

And I will go with her to the cancer doctor and I will rattle cages. She lives alone, she has no children, she has a brother in Alaska. But she also has an advocate. One who knows the medical system and who is not in an ethical stupor.

For the Ragtag Daily Prompt: stupor.

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Dream stealer

I am taking your dreams because you don’t want them.
You don’t want him. Your small child.
You let him out to play with me, for a while.
But you say you you are always happy.
You say things are perfect.
You say our friendship is forever.
Then you start to back away.
You take music first: I can’t sing along.
You stop teaching me your instrument.
You stop me from listening to practice.
You sing to me on my guitar
but you never listen.

You keep me from your friends.
You keep me from your family.
You don’t want to say
that you love me as a friend.

The connection dies as you hack parts away.

Only the beach is left.
Your small child plays and laughs with me
at the beach.
And that is gone too.

I am hurt. I block the connection for a year.

A year is gone.
You won’t come back.
You can’t come back.
I do not want you back.
But I open the connection.
I want your small child
and all the monsters you keep hidden.
Bears and monsters, come.
Come with the small child and play.

Is it unethical to steal a soul
if it is not loved?
If it is not listened to?
If it is trapped and frightened?

I am stealing your dreams because you don’t want them.
And I do.

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I look for dream stealer myths. Not a succubus. Nor a dream weaver. Something else. Maybe something that is not textbook. Or a kitsune?

For the Ragtag Daily Prompt: textbook.

I took the photograph on North Beach yesterday.

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A Good Reaction 2

I am still working my way through my immune response to an influenza shot and six days later, my Covid-19 booster.

I am kicking myself a bit for having them that close together, but at least my immune system responds. I think my immune system takes a shotgun approach and raises ALL the antibodies, and since I most probably have some antibodies that attack my own tissues, it’s not terribly much fun. I’ve had to put pulmonary rehab on hold until my fast twitch muscles work again. They aren’t working and my slow twitch muscles are very pissed off and stiff at having to do double duty. If I do aerobic things, my rib muscles hurt for two days. THAT feels awful.

The good thing (ha.) is that I am having the antibody response but I do not have pneumonia. The working theory is that I have PANS and antibodies to tubulin. Tubulin powers muscles, including lung cilia. Their job is to clean any trash out that gets breathed in. I am at much higher risk for getting pneumonia while the lung cilia are on auto-immune vacation. I am mostly staying home and masking when I go out. A friend got exposed to Covid-19 and refused to test at day five. Well, ok for him, but he could be asymptomatic. So he’s not allowed anywhere near me for at least another ten days. I disapprove of his callousness towards me and others.

Tobacco also paralyzes lung cilia. When I was working I would warn smokers that they might cough more when they stopped smoking, because the cilia would wake up and clean house. “Hey! No one has swept here in years!” A year after quitting smoking, the lung cancer risk drops almost to that of a non-smoker, because those cilia clean house. Isn’t THAT cool?

I don’t know how long my fast twitch muscles will be screwed up. With the last pneumonia, it was nearly a year before the antibodies finally went down. I woke one morning with my slow twitch muscles insanely stiff and my fast twitch back but weak as a newborn kitten. My slow twitch muscles were yelling at my fast twitch: “Where have you BEEN? We’ve been doing YOUR WORK!!” My fast twitch were confused, weak and surprised. I could barely walk down my stairs that day.

Even so, I am lucky. I have a version of chronic fatigue, but because only my fast twitch muscles are affected, I can still do stuff while sick. The people who can barely get out of bed, my working theory is that it is both the fast twitch and the slow twitch muscles that are affected.

And then there are the brain antibodies. Ugh. The silver lining is that the antibodies make me a bit OCD and a bit ADHD, so I am organizing the house. I vacuumed the stairs. That sounds trivial except that I HATE the vacuum. I usually use this peculiar cat hair sponge thing on the stairs, but this time I got the vacuum out. I think organizing and vacuuming are hella funny symptoms of autoantibodies.

Here is a blog post by another physician, also about brain antibodies and encephalopathy. Brain inflammation.

https://www.potomacpsychiatry.com/blog/infectious-diseases-and-psychiatric-illness

Great blog post. And the NIH paper on multiple studies of encephalopathy:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6455066/

If I have the energy today, I may try to look up the trajectory of antibody rise and fall after immunization. My brain tells me somewhere between 6 weeks and 6 months, pulling old data from somewhere, but I took immunology classes when I was working at the National Institutes of Health (late 1980s) and in medical school (early 1990s), so there may be new information. Science changes. I am hoping for less than six months really, and meanwhile trying not to get pneumonia.

Blessings and peace you.

I took the photograph in 2021, while I was REALLY sick. Glow in the dark Zombies stealing the cat food. I have to entertain myself somehow when I have pneumonia.

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Is this a tree?

Is this a tree?

I would not call this a tree. I would call it a cone. It contains seeds. It is not a tree.

A pregnancy is called an embryo until 8 weeks after conception and then a fetus until birth. It is not a baby, any more than a seed is a tree. Here is a link to a picture of the embryo developing:

https://en.wikipedia.org/wiki/Human_embryonic_development#/media/File:HumanEmbryogenesis.svg

It’s a bit difficult to call the embryo a baby.

After 8 weeks (10 weeks from the last menstrual period) the developing pregnancy is called a fetus. It cannot survive outside the womb. A term pregnancy is 37 weeks, and the due date is at 40 weeks. The earliest survival, certainly not natural, is around 24 weeks. This takes heavy intervention and technology, a premature infant on a ventilator for months. There is risk of damage to the eyes from high oxygen and risk of spontaneous brain bleed and cerebral palsy, because the newborn can weigh half a pound. Once born, the fetus is termed a baby.

This is important from a medical standpoint and pounded into us as physicians. WHY? Because in a trauma situation, the life of the mother comes first. In Obstetrics and Family Medicine, the life of the mother comes first. In Oncology, the life of the mother comes first. My sister was diagnosed with stage IIIB ductal breast cancer at age 41. She was engaged and it turned out that she was pregnant. She wrote this essay on her blog, Butterfly Soup:

The hardest loss of breast cancer.

She had an abortion and chose chemotherapy, because it was her or the fetus. If she had chemotherapy pregnant, at that time she was told that it would probably kill the fetus or cause terrible birth defects. If she held off on chemotherapy for seven months, her oncologist thought she would die. She had a very very aggressive cancer and she already had a daughter who needed her.

She lived until age 49, with multiple rounds of chemotherapy, radiation, gamma knife radiation, whole brain radiation. And she lived until her daughter was 13. Without the abortion, her physicians thought she would have died when her daughter was 7.

My ethics in medicine are that patients have autonomy. I would NOT have wanted my sister to choose to refuse chemo and try to bring a baby to term while dying of breast cancer. However, it was HER CHOICE, not mine. It was private and no one else’s business and how dare people make moral judgements about another person’s medical choices. I give my patients CHOICES. They can choose not to treat cancer and go into hospice. They can choose surgery or refuse it. They can choose to treat opioid addiction or refuse. They may die of a heroin overdose and I grieve. I try to convince them to go to treatment and I give them nalaxone to try to reverse overdoses. I refuse a medication or treatment that I think will harm my patients, but my patients have autonomy and choices. That extends to women and pregnancy as well.

It is NOT a baby in the womb, however emotionally attached people are to this image. It is an embryo first and then a fetus. And in a car wreck, the woman comes first and the fetus second.

For the Ragtag Daily Prompt: explain.

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website ethics and mine

Two days ago I wrote to the owner of the website that “separated” me for “not explicitly breaking the rules”.

I have not gotten an answer.

Doesn’t matter, you say. I disagree. I think our ethics matters and it matters on line. Isn’t that part of what we are fighting about?

Let’s drill down. The editors stated on this obscure not to be named site that they were tightening rules and removing write-ups that should be logs or are just not high enough quality, and letting the writers repost them as logs. So far they have removed over 250 of my writeups. Ironically, I was one of the two most prolific writers in the last year. Let’s kill the golden goose because she’s annoying, won’t we? The other writer has not been “separated”.

I note that they have removed my write up called “birth of ——–“. Now, this interests me. This was a well received write up, had up votes, and was the start of a category. The category was people explaining how they chose their on line name.

So: the editors are liars and abusing their power. They have removed a well received and well liked write up because they have personal animosity towards me. I have protested the removal of 250+ writeups and asked that they be reposted as logs. No answer.

The other writeups in the how I chose my name category are still there. So this is PERSONAL and the editors of the site are unethical.

Therefore, I hope the site dies. Or gets rid of those editors. I think I want it to die, even though it has writing by my sister. This does matter. As a species, we will either learn to be fair and human on line as well as off line, or we will end in conflagration. The site will certainly not be there if we start lobbing nuclear bombs at each other. The owner works for the US government. Why is he/she not paying attention to this obscure website that he/she owns?

Whether or not the world burns this month, if the editors are manifestly unfair on the site, the site will die and deserves to die. I wish that I could have my sister’s drafts before it shuts down.

I ended my email that is not answered with this: Good luck. I hope that ethics matters to both of us.

Thank you.

on line site name

_______________________

I will not name the site here or anywhere again, until and unless those editors are shut down and the site becomes ethical.

We are fighting this fight as a species, as humanity. We have to learn to be as ethical on line as we are in person. Well, you say, some people AREN’T ethical. Yes, that is true. As a rural physician, my goal is to take care of ANYONE WHO COMES IN. The emergency room physician cares for the family of four hit by the drunk and the drunk too, even if there is a dead child in the family of four. We set our judgement aside and do the best for each and every patient, regardless of the story. At least, that is the goal. It is the highest goal I know of.

Blessings and be your ethical self on line. As my children said to me when I threw their father out of the house once, “We don’t care what he does. We want you to be polite to dad no matter what.” And they were RIGHT! We answer to ourselves and to the Beloved and to our children.

Blessings.

The photo is me and my sister, dancing before my wedding in 1989. She died of cancer in 2012.

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solitary tree and thought

Sunrise in Wisconsin last week.

My solitary thought this morning is about ethics. It does not matter what the other person has done, we still must be true to our ethical values. This means that a contractor can’t refuse to pay a worker. I am thinking of my own behavior but I am also thinking of the White House. I want an ethical president, a president who takes responsibility, a president who does not blame others, a president who stands up for what is right. A president who put ethical values first. Not money. Not predation. Not fake news. Not lies. Not corporations over citizens. Citizens are people. A corporation is not a person.

I want an ethical president who will not lie.