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.
This is the most fucked up thing I’ve ever read, ““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.”
I hope whoever wrote that finds out that when a person is finally released from a “meaningful life” they often finally have the opportunity to BE themselves, to DO what pertains to them. Holding up the sky, patching things up and holding them together is NOT necessarily a “meaningful” life. “have value”? Way more than that. They ARE life. It’s like Prof. Keating said in DPS, about poetry, it’s what makes life worth living.
When my mom was out of her head and in the hospital I met this attitude for the first time. In her case it didn’t seem that the age thing was the big deal (for me) but that she was definitely very very very far out there and hated me so much that there was no way I was stepping up to be her room mate so she could go home. But the doc said, “Well, she’s 74.” I got his point, but it seemed very very cold. What if there WERE hope for her to recover? Would he have helped? OH well. I see it in my own doctor and me. I pretty much get whatever treatment I ask for. Knowing that and having been through this with my mom and various aunts I have made decisions about what I will and will not do. No one is going to step up and help me out. It’s on me. Fine. I’m 72 in a few days.
I agree!
So frustrating, especially for a physician who knows what could be done. Stay strong, best wishes for this year.
Thank you and you too.
Thankfully my Primary is an older MD for whom medicine was a late calling. He gets it that older people have value. but Ith all the stress of practice these days I think there is a subconscious sort of triage going on in EW, and some practices. the first time I get the routine of “Oh, you’re in your late seventies…” I’m going to go full irritated codger, and rip someone a new one.
Good. I love my grumpy codgers. They try to scare me but they are total softies inside.
Please don’t tell anyone else!
So sorry to hear of your loss. Most of us don’t have advocates like you, and I’m afraid you are right about post covid fatigue in health care.
I highlighted the same paragraph you did in Emanuel’s essay, about “play” and “meaningful”. I know this is a complex issue. We do spend an inordinate amount at the end of life, to prolong the dying process. Is it because we are afraid of dying? (And are we afraid of our own death or, as health care practitioners, afraid of “failing” because our patients die?) On the other hand, the essayist’s position almost seems to be that we should die at work so we can stay “meaningful”; though I could argue that there is nothing “meaningful” about many jobs in our society.
The organization “Not Dead Yet” is a disability rights group. They want to make sure that we get to make those decisions ourselves; that they are not economic decisions made for us. It almost sounds as though Dr Emanuel argues for putting people with disability to death with his question of “whether our consumption is worth our contribution.” As long as he argues for himself I have no problem with his death on his 75th birthday. (I know that is not what he actually said.)
I could also argue (and have) that life may have no intrinsic meaning; that we bring meaning to life, not the other way around. He can’t tell me if my life is meaningful. Only I get to do that.
I’m reading his original article in the Atlantic. I do agree that a lot of the “Life Extension” stuff is stupid crap, but my experience with the doctors for both these patients is “What do you want me to do?” Neither was listening or thinking about what the patient needs or what the family needs. Families don’t know what the services are: they don’t know about Home Health or Dial a Ride or that if you are legally blind there are a lot of services that are covered and available. Yes, I think the article skirts putting people to death if not “contributing” too — but how much is HE consuming? Does he fly to travel a lot? What is his carbon footprint? Does his work as a physician justify it? Who decides? I chose family practice because I think the family matters, and when an elder is sick and failing and we are met with “Well, she’s 80.” or “What do you want me to do?”, that is a total failure of medicine and compassion. Thank you and I will check out “Not Dead Yet”.