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#Palliative care
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America's largest hospital chain has an algorithmic death panel
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It’s not that conservatives aren’t sometimes right — it’s that even when they’re right, they’re highly selective about it. Take the hoary chestnut that “incentives matter,” trotted out to deny humane benefits to poor people on the grounds that “free money” makes people “workshy.”
There’s a whole body of conservative economic orthodoxy, Public Choice Theory, that concerns itself with the motives of callow, easily corrupted regulators, legislators and civil servants, and how they might be tempted to distort markets.
But the same people who obsess over our fallible public institutions are convinced that private institutions will never yield to temptation, because the fear of competition keeps temptation at bay. It’s this belief that leads the right to embrace monopolies as “efficient”: “A company’s dominance is evidence of its quality. Customers flock to it, and competitors fail to lure them away, therefore monopolies are the public’s best friend.”
But this only makes sense if you don’t understand how monopolies can prevent competitors. Think of Uber, lighting $31b of its investors’ cash on fire, losing 41 cents on every dollar it brought in, in a bid to drive out competitors and make public transit seem like a bad investment.
Or think of Big Tech, locking up whole swathes of your life inside their silos, so that changing mobile OSes means abandoning your iMessage contacts; or changing social media platforms means abandoning your friends, or blocking Google surveillance means losing your email address, or breaking up with Amazon means losing all your ebooks and audiobooks:
https://www.eff.org/deeplinks/2021/08/facebooks-secret-war-switching-costs
Businesspeople understand the risks of competition, which is why they seek to extinguish it. The harder it is for your customers to leave — because of a lack of competitors or because of lock-in — the worse you can treat them without risking their departure. This is the core of enshittification: a company that is neither disciplined by competition nor regulation can abuse its customers and suppliers over long timescales without losing either:
https://pluralistic.net/2023/01/21/potemkin-ai/#hey-guys
It’s not that public institutions can’t betray they public interest. It’s just that public institutions can be made democratically accountable, rather than financially accountable. When a company betrays you, you can only punish it by “voting with your wallet.” In that system, the people with the fattest wallets get the most votes.
When public institutions fail you, you can vote with your ballot. Admittedly, that doesn’t always work, but one of the major predictors of whether it will work is how big and concentrated the private sector is. Regulatory capture isn’t automatic: it’s what you get when companies are bigger than governments.
If you want small governments, in other words, you need small companies. Even if you think the only role for the state is in enforcing contracts, the state needs to be more powerful than the companies issuing those contracts. The bigger the companies are, the bigger the government has to be:
https://doctorow.medium.com/regulatory-capture-59b2013e2526
Companies can suborn the government to help them abuse the public, but whether public institutions can resist them is more a matter of how powerful those companies are than how fallible a public servant is. Our plutocratic, monopolized, unequal society is the worst of both worlds. Because companies are so big, they abuse us with impunity — and they are able to suborn the state to help them do it:
https://www.cambridge.org/core/journals/perspectives-on-politics/article/testing-theories-of-american-politics-elites-interest-groups-and-average-citizens/62327F513959D0A304D4893B382B992B
This is the dimension that’s so often missing from the discussion of why Americans pay more for healthcare to get worse outcomes from health-care workers who labor under worse conditions than their cousins abroad. Yes, the government can abet this, as when it lets privatizers into the Medicare system to loot it and maim its patients:
https://prospect.org/health/2023-08-01-patient-zero-tom-scully/
But the answer to this isn’t more privatization. Remember Sarah Palin’s scare-stories about how government health care would have “death panels” where unaccountable officials decided whether your life was worth saving?
https://pubmed.ncbi.nlm.nih.gov/26195604/
The reason “death panels” resounded so thoroughly — and stuck around through the years — is that we all understand, at some deep level, that health care will always be rationed. When you show up at the Emergency Room, they have to triage you. Even if you’re in unbearable agony, you might have to wait, and wait, and wait, because other people (even people who arrive after you do) have it worse.
In America, health care is mostly rationed based on your ability to pay. Emergency room triage is one of the only truly meritocratic institutions in the American health system, where your treatment is based on urgency, not cash. Of course, you can buy your way out of that too, with concierge doctors. And the ER system itself has been infested with Private Equity parasites:
https://pluralistic.net/2022/11/17/the-doctor-will-fleece-you-now/#pe-in-full-effect
Wealth-based health-care rationing is bad enough, but when it’s combined with the public purse, a bad system becomes a nightmare. Take hospice care: private equity funds have rolled up huge numbers of hospices across the USA and turned them into rigged — and lethal — games:
https://pluralistic.net/2023/04/26/death-panels/#what-the-heck-is-going-on-with-CMS
Medicare will pay a hospice $203-$1,462 to care for a dying person, amounting to $22.4b/year in public funds transfered to the private sector. Incentives matter: the less a hospice does for their patients, the more profits they reap. And the private hospice system is administered with the lightest of touches: at the $203/day level, a private hospice has no mandatory duties to their patients.
You can set up a California hospice for the price of a $3,000 filing fee (which is mostly optional, since it’s never checked). You will have a facility inspection, but don’t worry, there’s no followup to make sure you remediate any failing elements. And no one at the Centers for Medicare & Medicaid Services tracks complaints.
So PE-owned hospices pressure largely healthy people to go into “hospice care” — from home. Then they do nothing for them, including continuing whatever medical care they were depending on. After the patient generates $32,000 in billings for the PE company, they hit the cap and are “live discharged” and must go through a bureaucratic nightmare to re-establish their Medicare eligibility, because once you go into hospice, Medicare assumes you are dying and halts your care.
PE-owned hospices bribe doctors to refer patients to them. Sometimes, these sham hospices deliberately induce overdoses in their patients in a bid to make it look like they’re actually in the business of caring for the dying. Incentives matter:
https://www.newyorker.com/magazine/2022/12/05/how-hospice-became-a-for-profit-hustle
Now, hospice care — and its relative, palliative care — is a crucial part of any humane medical system. In his essential book, Being Mortal, Atul Gawande describes how end-of-life care that centers a dying person’s priorities can make death a dignified and even satisfying process for the patient and their loved ones:
https://atulgawande.com/book/being-mortal/
But that dignity comes from a patient-centered approach, not a profit-centered one. Doctors are required to put their patients’ interests first, and while they sometimes fail at this (everyone is fallible), the professionalization of medicine, through which doctors were held to ethical standards ahead of monetary considerations, proved remarkable durable.
Partly that was because doctors generally worked for themselves — or for other doctors. In most states, it is illegal for medical practices to be owned by non-MDs, and historically, only a small fraction of doctors worked for hospitals, subject to administration by businesspeople rather than medical professionals.
But that was radically altered by the entry of private equity into the medical system, with the attending waves of consolidation that saw local hospitals merged into massive national chains, and private practices scooped up and turned into profit-maximizers, not health-maximizers:
https://prospect.org/health/2023-08-02-qa-corporate-medicine-destroys-doctors/
Today, doctors are being proletarianized, joining the ranks of nurses, physicians’ assistants and other health workers. In 2012, 60% of practices were doctor-owned and only 5.6% of docs worked for hospitals. Today, that’s up by 1,000%, with 52.1% of docs working for hospitals, mostly giant corporate chains:
https://prospect.org/health/2023-08-04-when-mds-go-union/
The paperclip-maximizing, grandparent-devouring transhuman colony organism that calls itself a Private Equity fund is endlessly inventive in finding ways to increase its profits by harming the rest of us. It’s not just hospices — it’s also palliative care.
Writing for NBC News, Gretchen Morgenson describes how HCA Healthcare — the nation’s largest hospital chain — outsourced its death panels to IBM Watson, whose algorithmic determinations override MDs’ judgment to send patients to palliative care, withdrawing their care and leaving them to die:
https://www.nbcnews.com/health/health-care/doctors-say-hca-hospitals-push-patients-hospice-care-rcna81599
Incentives matter. When HCA hospitals send patients to die somewhere else to die, it jukes their stats, reducing the average length of stay for patients, a key metric used by HCA that has the twin benefits of making the hospital seem like a place where people get well quickly, while freeing up beds for more profitable patients.
Goodhart’s Law holds that “When a measure becomes a target, it ceases to be a good measure.” Give an MBA within HCA a metric (“get patients out of bed quicker”) and they will find a way to hit that metric (“send patients off to die somewhere else, even if their doctors think they could recover”):
https://en.wikipedia.org/wiki/Goodhart%27s_law
Incentives matter! Any corporate measure immediately becomes a target. Tell Warners to decrease costs, and they will turn around and declare the writers’ strike to be a $100m “cost savings,” despite the fact that this “savings” comes from ceasing production on the shows that will bring in all of next year’s revenue:
https://deadline.com/2023/08/warner-bros-discovery-david-zaslav-gunnar-wiedenfels-strikes-1235453950/
Incentivize a company to eat its seed-corn and it will chow down.
Only one of HCA’s doctors was willing to go on record about its death panels: Ghasan Tabel of Riverside Community Hospital (motto: “Above all else, we are committed to the care and improvement of human life”). Tabel sued Riverside after the hospital retaliated against him when he refused to follow the algorithm’s orders to send his patients for palliative care.
Tabel is the only doc on record willing to discuss this, but 26 other doctors talked to Morgenson on background about the practice, asking for anonymity out of fear of retaliation from the nation’s largest hospital chain, a “Wall Street darling” with $5.6b in earnings in 2022.
HCA already has a reputation as a slaughterhouse that puts profits before patients, with “severe understaffing”:
https://www.nbcnews.com/health/health-news/workers-us-hospital-giant-hca-say-puts-profits-patient-care-rcna64122
and rotting, undermaintained facililties:
https://www.nbcnews.com/health/health-care/roaches-operating-room-hca-hospital-florida-rcna69563
But while cutting staff and leaving hospitals to crumble are inarguable malpractice, the palliative care scam is harder to pin down. By using “AI” to decide when patients are beyond help, HCA can employ empiricism-washing, declaring the matter to be the factual — and unquestionable — conclusion of a mathematical process, not mere profit-seeking:
https://pluralistic.net/2023/07/26/dictators-dilemma/ggarbage-in-garbage-out-garbage-back-in
But this empirical facewash evaporates when confronted with whistleblower accounts of hospital administrators who have no medical credentials berating doctors for a “missed hospice opportunity” when a physician opts to keep a patient under their care despite the algorithm’s determination.
This is the true “AI Safety” risk. It’s not that a chatbot will become sentient and take over the world — it’s that the original artificial lifeform, the limited liability company, will use “AI” to accelerate its murderous shell-game until we can’t spot the trick:
https://pluralistic.net/2023/06/10/in-the-dumps-2/
The risk is real. A 2020 study in the Journal of Healthcare Management concluded that the cash incentives for shipping patients to palliatve care “may induce deceiving changes in mortality reporting in several high-volume hospital diagnoses”:
https://journals.lww.com/jhmonline/Fulltext/2020/04000/The_Association_of_Increasing_Hospice_Use_With.7.aspx
Incentives matter. In a private market, it’s always more profitable to deny care than to provide it, and any metric we bolt onto that system to prevent cheating will immediately become a target. For-profit healthcare is an oxymoron, a prelude to death panels that will kill you for a nickel.
Morgenson is an incisive commentator on for-profit looting. Her recent book These Are the Plunderers: How Private Equity Runs — and Wrecks — America (co-written with Joshua Rosner) is a must-read:
https://pluralistic.net/2023/06/02/plunderers/#farben
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I’m kickstarting the audiobook for “The Internet Con: How To Seize the Means of Computation,” a Big Tech disassembly manual to disenshittify the web and bring back the old, good internet. It’s a DRM-free book, which means Audible won’t carry it, so this crowdfunder is essential. Back now to get the audio, Verso hardcover and ebook:
http://seizethemeansofcomputation.org
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If you'd like an essay-formatted version of this thread to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:
https://pluralistic.net/2023/08/05/any-metric-becomes-a-target/#hca
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[Image ID: An industrial meat-grinder. A sick man, propped up with pillows, is being carried up its conveyor towards its hopper. Ground meat comes out of the other end. It bears the logo of HCA healthcare. A pool of blood spreads out below it.]
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Image: Seydelmann (modified) https://commons.wikimedia.org/wiki/File:GW300_1.jpg
CC BY 3.0 https://creativecommons.org/licenses/by-sa/3.0/deed.en
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13/7/23 // 12.23
Study day for me today aka endless hot drinks and snacks
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344x-azucar · 10 months
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Commission of a scene from the fic Perfectly Imperfect by JustSomeStranger !
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pro-birth · 3 months
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Friendly reminder that prenatal children with a terminal diagnosis have a right to hospice/palliative care, and parents have a right to obtain emotional and psychological support through that time.
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wellsbering · 6 months
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i generally don't post about my personal life on here, but i went to high school with ariel and watching her cystic fibrosis progress so rapidly in recent years has been devastating. she's entering hospice today and is raising money to pay for her care, as her insurance won't cover all of her medical bills and as we all know healthcare in the united states is unbelievably expensive.
please donate if you're able, and please reblog this so it can reach other people.
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thirtytwoelvismovies · 6 months
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Arcade cat! 📸 by my significant other.
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nerdgirlnarrates · 1 year
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Recently I was talking to another med student and shared that before my grandmother died, her heart failure had gotten so bad that her doctors couldn’t effectively diurese her and she ended up needing several thoracenteses. The other med student suggested that these procedures were too aggressive and my grandmother’s doctors should have let her die instead. And I’m confused, because these procedures were very much palliative in nature: it is painful to have a pleural effusion preventing you from breathing well. She needed surgery to address the valve issues causing her heart failure, but she was not a good candidate for surgery, so she had already foregone curative measures. Also, my grandmother did not want to die of a pleural effusion. I’m not saying her quality of life was good--it wasn’t--but she didn’t want to essentially drown to death. And I’m kind of upset at the notion that her doctors should have forced her to die that way. That’s not humanity, peace, or dignity in death. Maybe I’m misunderstanding something, but the conversation has left me unhappy.
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A ‘twisted’ experience: How KY’s abortion bans are depriving pregnant patients of health care
BY ALEX ACQUISTO
On the way to her 20 week ultrasound, Amy English texted her family group chat inviting guesses on her baby’s biological sex.
“Baby boy English muffin!” her father in-in-law texted.
“I thought boy at first but I’m thinking girl now,” her sister-in-law said. “My official guess is a girl :).”
It was December 28. Earlier that morning, Amy, 31, her husband David, and their 20-month-old daughter Annie had celebrated a belated Christmas at their house in Louisville with family visiting from out of state.
Amy and David had planned this pregnancy, and it was, in a way, perfectly timed. Their baby’s due date was five days after Annie’s birthday. Her children would be two years apart almost exactly to the day — a reality Amy was “ecstatic about.”
Sitting in a fluorescent-lit room inside Baptist Health Louisville, Amy looked for familiar shapes on the screen as an ultrasound tech probed her abdomen. Familiar with radiology in her career as a physical therapist, she has a baseline understanding of how to read ultrasounds: gray shapes usually indicate fluid, and bone shows up as white.
Amy remembers seeing her baby’s arms, legs and the curve of its back. But there was no recognizable outline where the skull should be.
“I couldn’t see the top of my baby’s head,” Amy said in an interview with the Herald-Leader. “I kept waiting for the tech to move the probe in a way where we could see what we should be seeing. I could tell she was searching for it, too.”
Amy had also learned in school about anencephaly, a severe fetal birth defect impacting the brain and skull. A lack of folic acid early in pregnancy increases the likelihood of this happening. This possibility flashed in her mind but she quickly batted it down; she’d been taking her prenatal vitamins, rich in folic acid, for months even before discovering she was pregnant.
The tech paused, then spoke.
“What we’re looking for here is an outline of the baby’s head, and right now I’m not really seeing that,” the woman explained before calling in Amy’s longtime OBGYN.
Over the next few minutes, Amy remembers the room blurring as she heard her doctor use the word “acrania,” which is when a fetus matures through pregnancy without ever developing parts of its skull. It can spur anencephaly, when the brain, too, is underdeveloped and partially missing. Pregnancies with either of these conditions are nonviable.
Amy’s baby, which they learned was a boy, had both. He would not survive into childhood, likely not beyond a few minutes after birth.
This, alone, was devastating news. Her dismay was compounded the next day when she learned that terminating her nonviable pregnancy, even by way of an early induction — a commonplace and provider-recommended method of treatment for such a diagnosis — couldn’t happen.
Even though Amy’s baby would never survive outside her womb, the pregnancy still had a fetal heartbeat — a technicality, considering the diagnosis. Coupled with the lack of immediate threat to her health, her doctors explained they couldn’t induce labor, much less give her an abortion. Kentucky laws forbade it, they said.
“I don’t know what was more shocking: to find out the baby had anencephaly, or that I would have to go out of state to get this care,” Amy said.
Kentucky’s abortion bans do not legally permit the standard of care treatment for a nonviable pregnancy like Amy’s. As a result, doctors must refer patients needing otherwise medically-recommended terminations out of state in droves, along with people desiring elective abortions, according to interviews with seven providers across four hospital systems. Providers who terminate pregnancies in violation of the trigger law can be charged with a felony in Kentucky.
Though this scenario is increasingly common statewide, it’s one arbiters of the state’s laws have yet to remedy, and one lawmakers are not publicly working to resolve.
Kentucky’s trigger law, enacted in late June 2022, criminalizes abortion except to prevent a “substantial risk of death,” or to “prevent the serious, permanent impairment of a life-sustaining organ of a pregnant woman.” The fetal heartbeat law also includes these exceptions but otherwise bans abortion except in a “medical emergency” once fetal cardiac activity begins, usually around six weeks.
Any time a pregnancy is terminated, each law requires a provider to document in writing why it was necessary to, in the case of the six-week ban, “prevent the death of the pregnant woman or to prevent a serious risk of the substantial and irreversible impairment of a major bodily function of the pregnant woman.”
The law permits the Cabinet for Health and Family Services to audit any licensed health care facility to make sure its abortion reporting requirements are “in compliance” with the law.
Both bans allow physicians to use their “reasonable medical judgment” when deciding whether pregnancy terminations are medically necessary. But providers interviewed for this story said that guidance is antithetical with the rest of the law’s limits, which only permit terminations in medical emergencies. There are no exceptions for fetal anomalies, or for the gamut of conditions that may make a pregnancy nonviable but don’t pose an immediate or emergent health risk to a pregnant person.
Moreover, the lack of uniform guidance from the state on what’s considered an emergency means definitions across hospitals sometimes vary, the Herald-Leader found. This has created a legal thicket for health care institutions. As a result, the final say on some critical medical decisions affecting pregnant patients is falling not to medical experts, but to hospital attorneys and administrators, who are worried about legality, liability and reputation.
The Herald-Leader asked the University of Kentucky, UofL Health and Baptist Health for insight into how their respective risk management teams and providers are navigating the laws. None responded to multiple questions about respective protocols for deciding when terminations are legally defensible, or how risk management teams, administrators and providers go about deciding.
“Clinicians have a responsibility to provide compassionate, evidence-based care and counsel to their patients, and also comply with the law,” Baptist said in a statement.
“UofL Health is committed to provide comprehensive health care to all its patients and their families,” UofL said in a statement. “In the case of a nonviable pregnancy that poses a health risk to the mother, we explain options for care while complying with all state and federal laws.”
“Although we cannot discuss when or how our legal counsel gives advice,” UK HealthCare said, “in Kentucky, state law prohibits the University’s physicians and staff from performing abortions except when the mother’s life is in danger. In the case of a nonviable pregnancy, our health care staff work with patients to determine the best course of care for the patient that is consistent with state and federal law.”
‘WE COULD NOT PROVIDE THIS SERVICE HERE’
The morning after Amy learned her baby likely had a fatal birth defect, the diagnosis was confirmed at a second ultrasound with a high-risk specialist. The buoyancy and excitement of the prior day was replaced with dread and grief. Amy remembers the quietness of the room during the second ultrasound, the hollow clicking of the keyboard keys and the intermittent clicking of the computer mouse.
Baptist Health refused to make Amy’s doctor available for an interview. But their conversation was outlined in Amy’s medical records, which were provided to the Herald-Leader.
“I discussed this finding with the patient and offered my sincerest condolences — that this was not compatible with life and that I am so sorry she and her husband are in this situation,” the doctor wrote in her notes. “She was understandably tearful.”
Amy listened as her provider explained her two options: Amy could carry her son to term and deliver him via C-section. He would immediately be taken to palliative care, where he would live a few minutes, maybe hours. Grief counselors would be on standby.
Her second option was to terminate the pregnancy early by way of an abortion or preterm induction. “Choosing not to continue the pregnancy: we discussed that this is also a loving choice for a baby that will certainly not survive,” her doctor wrote.
Pre-trigger law, termination under these circumstances would’ve happened in a hospital, and Amy’s health insurance likely would’ve covered it.
“No part of me wanted to be pregnant anymore,” Amy said. “Every flutter and kick he gave felt like a literal gut punch reminder that I would never get to take him home.”
Strangers were already approaching her at the grocery to ask to touch her stomach. Her patients at work often asked how far along she was. It seemed emotionally unthinkable to continue subjecting herself to a life where, at any moment, she would be forced to repeat that her growing body was nurturing a baby that wouldn’t live, she said.
Termination was what Amy wanted. She erupted into sobs when her doctor told her that under her current circumstances (her life wasn’t immediately threatened, and there was still a fetal heartbeat) it wasn’t an option.
“We discussed that due to our current Kentucky laws, we could not provide this service here,” her doctor wrote in her records.
“I’m sorry, I’m sorry, I’m so sorry,” Amy remembers the specialist saying.
She gave Amy a list of hospitals and clinics in surrounding states that might be able to terminate her pregnancy. Her doctor recommended calling Northwestern Memorial Hospital in Chicago, or another clinic in Illinois, where abortion is widely available.
“Am I just supposed to Google the number, call the front desk and ask, ‘How do I get an abortion at your hospital?’” Amy remembered thinking.
Over the next few days, she, her husband and sister-in-law cold-called a handful of clinics to request a dilation and evacuation abortion, common in the second trimester. But a combination of abortion restrictions in Indiana and Ohio, including gestational limits on when abortion is legal — Amy was 21 weeks along at this point — left her with few options.
Then, Amy’s sister, a nurse anesthetist at Northwestern Medicine Kishwaukee Hospital in Dekalb, west of Chicago, stepped in. Her hospital lacked the equipment for a D&E, but they agreed to induce Amy.
On January 4, after driving close to 400 miles, Amy was induced and gave birth to a son she and her husband named Solomon Matthew. He didn’t cry. His heart beat for about two minutes before it stopped.
‘NOT KNOWING WHAT TO DO’
The Republican-led General Assembly has made no moves to amend or further clarify either abortion ban since both took effect seven months ago, even though the combined impact has harmed patients, doctors have told lawmakers.
The Kentucky Supreme Court still hasn’t issued a preliminary opinion on whether either law infringes on a person’s constitutional right to bodily autonomy and self-determination. Deciding so would temporarily block one or both bans from being enforced. Convened for a regular session through March, the Republican supermajority has yet to file any bills related to reproductive health care access and likely won’t until the high court weighs in.
In the meantime, there’s disagreement about whether or not either ban infringes on providers’ ability to dole out the standard level of care to pregnant patients.
Kentucky Supreme Court Justice Michelle Keller and former Deputy Chief Justice Lisabeth Hughes raised this point during November oral arguments in the pending court case from the state’s two outpatient abortion clinics challenging the constitutionality of both laws.
The trigger law “doesn’t recognize an exception for women who are under the care of a physician who tells them that the standard of care would be to terminate the pregnancy,” Hughes told Solicitor General Matt Kuhn, arguing on behalf of the Attorney General’s office.
As a result, “What’s really happening is physicians in (hospitals) all over the commonwealth are calling the risk managers and attorneys for the hospitals not knowing what to do,” Keller added. “You’re obfuscating what this trigger statute says. There isn’t a strict life of the mother exception.”
The law’s proponents, including Republican Attorney General Daniel Cameron, have cited the provision in the law that allows for use of “reasonable medical judgment” as protecting doctors’ autonomy, and that any challenge to that fact is overblown.
“The law has an explicit health exception, (which) depends on a ‘reasonable medical judgment’ from physicians,” Kuhn told Kentucky Supreme Court Justices that day. There’s been “a lot of misinformation” suggesting the law doesn’t adequately protect a pregnant person’s health, he said, citing two advisories Cameron’s office has issued since both measures took effect. Both clarify that in vitro fertilization, and abortions as treatment of miscarriages, preeclampsia and ectopic pregnancies don’t violate the law.
As for the host of other conditions not mentioned, “we are continuing to work with Kentucky doctors giving guidance on that,” Kuhn said.
But no written evidence of that guidance appears to exist. In response to an open records request from the Herald-Leader, Cameron’s office said this week it had no written or electronic records of communication between the Attorney General’s office and licensed health care facilities or providers regarding the trigger law or six week ban.
‘AN UNNECESSARY PHYSICAL AND PSYCHOLOGICAL RISK’
It was mid June when Leah Martin, 35, discovered she was pregnant with her second child.
Pregnancy at ages 35 and above is considered geriatric. Aware that her age meant she faced a heightened risk, she opted for genetic testing early on to gauge any abnormalities.
Her first ultrasound didn’t raise any alarm. At just over nine weeks, Leah took a prenatal genetic test. The results a week later showed “low fetal fractal numbers,” she said in an interview.
That result, her OBGYN told her, could mean there hadn’t been enough material collected to show a clearer result. It could also signal an abnormality.
Leah, wanting to be judicious, got a more exact genetic test just before 12 weeks. She quickly learned her fetus had triploidy, a rare condition that causes the development of 69 chromosomes per cell instead of the regular 46. It causes not only severe physical deformities, but triploidy stunts development of crucial organs, like the lungs and heart. It means a fetus, if it even survives to birth, will likely not live beyond a few days.
What’s more, Leah was also diagnosed with a partial molar pregnancy, which causes atypical cells to grow in the uterus and, as Leah’s doctors told her, could lead to cancer.
It was mid-July, and Kentucky’s trigger law and six week ban had been in effect for barely two weeks. Leah was familiar enough with what both laws restricted and assumed that because her pregnancy could cause her cancer and was nonviable, she would lawfully qualify as an exception.
So, she weighed her options with her doctors at Baptist Health Lexington, who included Dr. Blake Bradley, her longtime OBGYN.
Similar to Amy’s diagnosis, Leah’s doctors told her that even if she opted to carry the pregnancy to term, her baby “would live a short life in palliative care, most likely never leaving the hospital. It would really be a quite painful existence,” she said.
“I have a 2-year-old at home, and I’m 35, weighing how I would like to expand my family. It seemed like the safest option for me and the compassionate choice for my unborn child was to terminate the pregnancy,” she said.
Like Amy’s, a medically-necessary abortion under these circumstances would typically take place at a hospital, doctors interviewed for this story said. Leah’s health insurance had already agreed to cover it. It was also the quickest way to help Leah to her end goal: getting pregnant again in order to birth a child that would survive.
It was July 21 and Leah was just over 12 weeks pregnant when she learned that Baptist’s legal counsel had blocked her doctors from giving her a dilation and curettage abortion.
“I was told the hospital refused to perform the procedure while the case was being litigated. I was dumbfounded,” Leah said. Hospital lawyers cited an ongoing lawsuit from Kentucky’s two outpatient abortion providers that’s pending before the Kentucky Supreme Court.
According to Leah, hospital providers, relaying the message from administration and risk management, reportedly said if her fetus died on its own, doctors would be able to terminate her pregnancy. But their hands were tied as long as it had a heartbeat.
“People minimize that pregnancy, even under its best circumstances, is associated with life-threatening risks, life-altering risks and emotional impacts,” Bradley told the Herald-Leader. “So, to compel a woman to continue a pregnancy that is by everyone’s assessment, doomed, by definition places that woman at an unreasonable and unnecessary physical and psychological risk, period.”
Baptist Health refused to make Leah’s high-risk doctor available for an interview.
The following Monday, July 25, Leah had an ultrasound at the hospital to confirm what she already knew. As an ultrasound tech probed her abdomen, a wheel of dizzying emotions spun in her head: she desperately wanted a baby, but she didn’t want to birth a child into a painful existence.
Already faced with a gutting dilemma, she felt further burdened by having such an intimate choice ripped from her. And she was furious at now being forced to remain pregnant despite there being no chance for survival, despite the risks continuing such a pregnancy posed to her own body.
She remembers staring at the ultrasound screen waiting to hear the muffled heartbeat of her fetus, racked with guilt because she hoped she wouldn’t.
“It was such a twisted experience being pregnant with a baby I desperately wanted, lying there hoping its heart had stopped,” she said shakily. “It was horrible to have to wish for that in order to receive care. It just felt so unsafe and cruel.”
Leah had already arranged to drive to Chicago to get an abortion when a Jefferson Circuit judge issued a preliminary injunction on July 22, temporarily blocking the state from enforcing both bans. She immediately called EMW Women’s Surgical Center in Louisville — one of the plaintiffs in the lawsuit against the state — and made an appointment.
On Wednesday, July 27, almost 13 weeks pregnant, Leah paid $950 out of pocket for her abortion. Her insurance wouldn’t cover it, since it was considered elective. The following Monday, the Kentucky Court of Appeals overturned the circuit court injunction, reinstating both abortion bans.
After Leah’s abortion, she sent a message to her high-risk doctor. Her doctor responded the following day. Leah shared that correspondence with the Herald-Leader.
“You’ve been on my thoughts a lot,” her doctor wrote. “Words cannot express the dismay I feel right now. I’ve spent my whole adult life learning how to care for mothers in heart wrenching or dangerous situations like yours, and the politics now make it not only impossible, but to work to take care of patients like they deserve — with compassion and science — in these horrible situations is wrong and immoral.”
“I hope your procedure yesterday was smooth, though I know it was hard,” her doctor wrote. “I’m so sorry we could not (were not allowed, rather) to take care of you here.”
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masterofescapism · 7 months
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I’ve been dying for so long now that I’ve become used to it, but signing the DNR (do not resuscitate order) and starting palliative care has been eye opening.
Being online is so difficult now. EVERYONE talks about the future. Things they look forward to, things they want to change, saying that things will change. Will get better.
I even find myself thinking about books, movies, and tv shows, new seasons of the shows that’ll come out and that I don’t even know if I’ll be alive to see any of them.
It’s just really depressing and really hard knowing that things will not get better for me. It’s only going to get worse from here. But the world just spins madly on.
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bengesko · 5 months
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Had a small argument with someone about geriatric pet care, and this topic has me a bit incensed.
If your pet is in their twilight years, or is older than their expected lifespan, it is NOT abuse to consider palliative care for them.
My cockatiel is 35. Not a typo. Thirty-five. In human years. He hatched in 1988, the same year as my younger sister. He came into my life in 1992, and has been a part of my family ever since.
I've seen him age from a spunky, devious little shit who loved to fly, into a sedentary, curmudgeonly old fart who only lives for love, scritches and millet.
Gino had a stroke almost eight years ago, and he hasn't been able to fly since. He had a fall over a year ago and now has reduced motion/use of the leg on the same side as his bad wing. He's 50% blind in the eye on that side.
He has seizures because of his stroke, that lead into night frights. He has arthritis that's painful, so preening is harder for him, which means more baths, because otherwise his nose gets clogged with dust.
There are treatments to "try" to "fix him." There's expensive, unnecessary physical therapy to try to "get him into shape."
I don't want to extend Gino's life if it means putting undue stress on him. He's been a motivation throughout my life, my best friend since I was a child- a sibling and a son, a life partner, all in one.
Why would I torment my loved one just to extend his time with me? It's selfish.
I am very lucky to have found a vet that believes in palliative care. Gino is on gabapentin for his seizures, and meloxicam for his pain. I was given some exercises for his leg and wing to keep him comfortable and avoid pressure sores/bumblefoot. I have changed his cage arrangement to be more comfortable/safe for his disabilities.
Gino gets whatever food he wants, cuddles, scritches, treats, etc, whenever he wants them. Sleep/naps as long as he needs.
Because I want his twilight years to be comfortable, dignified and full of love.
I am not "giving up" on him because I refuse to pour money I don't have into a loved one who has exceeded his expected lifespan.
I am giving him the dignity and comfort he deserves for being my lifelong companion, and making sure his last years with me provide happy memories that are of us enjoying time together, instead of memories I might regret for putting him through unnecessary treatments that might- at best- give him a few more months.
And I say unnecessary because even at 35, despite everything, Gino's weight/appetite is good. He's still alert, happy, and chatty- he's just a sleepy old man. He has his medical issues, but so do I.
There is nothing wrong with ensuring quality of life instead of length of life. A longer life for your pet means nothing if they're not happy and comfortable.
Palliative care matters, and should never be seen as "giving up."
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hernameispekka · 9 months
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Gearing up to spending a few hours by mormors (my grandmothers) bedside today again. Thankful that I get to keep her company since she's very clearly ready to move on soon. I'm very much her grandchild, packing down some mending and needle+thread so I have something else to do than be on my phone the whole time, haha!
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abs0luteb4stard · 6 days
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22/7/23 // 15.18
Benefits of being a hospice gal- you get to sit with all the pretty flowers 🌸
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naomiknight-17 · 1 year
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Dinner's done, time to eat the towel and blankets
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pro-birth · 4 months
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This is what pro-life, palliative care looks like for the child with a terminal diagnosis.
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honeylover · 22 days
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cancer uh oh
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