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.

Thanks

And no thanks do I get
for thirty years in medicine
for thirty years of rural work
for working alone without a net
not a whisper from officials

The thanks I get are on the street
in the shops, at live music
at Gallery Walk, at thrift stores
walking through town, from friends
from patients or spouses or mothers or fathers
who thank me and update me

Thank you, Beloved, for my odd career
for leading me rural, leading me to primary care
endless learning daily and people
they are all interesting, all different
all have depths that none would guess
all of your beautiful people, Beloved

Thank you for all of it

For the Ragtag Daily Prompt: tiara.

This is one of those poems where I started grumpy and did not know where it was going until it went there. The light at the end of the tunnel photograph is on the Metro in Washington, DC last week.

Tiaras probably quality as stuff.

We change

In clinic, a very common complaint was, “My body has changed!” This was often with shock or annoyance or betrayal. Weight up, a knee hurting, headaches, menses behaving badly as menopause approached, gentlemen with their own problems.

My muscles are getting stronger but are really grumpy. I am starting to rebuild muscle and endurance but my muscles and joint complain. I think that pain is the pain of wisdom. I am clearly very very wise, if that pain is wisdom pain. It feels better to frame it as wisdom than as “Oh, I am old.” Also it’s fun to watch people when I say, “My wisdom is really acting up today.” They get a funny look on their faces.

Medicine changes all the time too. Isn’t that a little unsettling? Science changes, ideas change, frames change. A treatment that I used 15 years ago would not be done for the same problem now. And we can treat hepatitis B and C! Hepatitis C was still named “Non A, non B hepatitis” back when I was in residency in the early 1990s. Hoorah for some things getting better.

It’s been interesting watching the changing ideas about Long Covid. Over the last year they’ve said, “Better in nine months.” “Mostly better by a year.” “Better by two years, mostly.” Also the estimates of people affected in the US have ranged from 3% to 7.4%. There is not even agreement about the definition, with the CDC talking about symptoms staying present after four weeks. Meanwhile the World Health Organization says, “It is defined as the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.” Here: https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition. CDC here: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html.

I hope that we vote grown ups into office. I hope we aren’t tempted by the childish want to be dictators who say, “I can fix anything, I can do what I want, I am so great. I can make YOU great too.” I think the pandemic was very frightening and the temptation is to try to hide in an imaginary past or freeze the future or think that if we make everyone behave a certain way, no further pandemics will come. I do not think that will work, people. Vote for adults.

The photograph is from the US Botanic Gardens. Here is the model, inside:

The sculpture faces are over each arch. Here is a close up.

I think the carved face will last the longest, then probably me, then the one on the model. The model looks like it would be delicious for various smaller creatures.

For the Ragtag Daily Prompt: change.

Home Hurrah!

New Year’s Eve was a travel day for me, flying from Dulles to SeaTac. This time my checked bag came along and did not divert to party in Chicago, as it did on the trip out. I had a wonderful two weeks in Arlington, Virginia and Rockville, MD with old friends and my son and daughter-in-law and daughter. Very kind friends picked me up at SeaTac and drove me the two hours home. I slept for three hours on the plane and another hour in the car. The pair of socks on yesterday’s Ragtag is for one of the two people who picked me up.

The plane was about 40 minutes early and the airport was impressively empty. There was some traffic on I5, but it was not crazy. There was quite a bit of fog all the way home.

Yesterday morning we went to the climbing gym for the second time in the two weeks. I had not climbed in maybe three years? And I have never done a lot.

The rest of my family climbs like squirrels and spiders. I currently climb more like a panicked sloth, but I did a 5, a 5.6 and a 5.7 the first day. Yesterday I planned to take it easy, but I roped up for one and it was the wrong one, so I tried a 5.8. My family was clambering up 5.11s. Whew. It was really fun and loads of fun to watch them. And hurrah that I can climb some after Long Covid and two years with unhappy muscles!

Peace and joy to you and yours.

For the Ragtag Daily Prompt: Hurrah!