Health care law (including regulatory and compliance issues, public health law, medical ethics, and life sciences), with digressions into constitutional law, statutory interpretation, poetry, and other things that matter
Saturday, July 18, 2020
Playing politics with H1N1 vs. COVID-19 testing . . .
Friday, July 17, 2020
D.C. Circuit Drives Another Nail into the ACA's Coffin
Early on in the Trump administration, the Departments of Treasury, Labor, and HHS rules that short-term limited-duration health insurance plans should be available without complying with various underwriting rules that would otherwise be required by the ACA. These are cheap policies that don't cover very much. Once upon a time, they were designed for an initial coverage period of up to six months and were intended to provided "gap" coverage for individuals who were between real health insurance plans. The 2017 rule, however, allows these all-but-worthless plans to be sold for an initial period of three years and to serve as the primary health coverage provided by employers. It doesn't take a genius to figure out what the Trump administration had in mind: provide employees with the option of low-cost alternative to more expensive (and better) health plans and they will probably take it.
Today the D.C. Circuit in a 2-1 decision upheld the rule. You can read the opinions in Association for Community Affiliated plans v. U.S. Department of Treasury here. The majority opinion is pretty depressing. Judge Judith W. Rogers -- one of the few bright lights left on the D.C. Circuit Court of Appeals -- dissented in an opinion that really should have been a majority opinion. Her introductory paragraph says it all:
I hope the en banc court takes this up, or that SCOTUS will fix it, but I am not holding my breath. Perhaps a new administration in 2021 will get this right.Today the court upholds a Rule defining “short-term limited duration insurance” (“STLDI”) to include plans that last for up to three years and function as their purchasers’ primary form of health insurance, in stark contrast to the gap-filling purpose for which such plans were created. Because STLDI plans are exempt from the requirements of the Patient Protection and Affordable Care Act (“ACA”), insurers offering them can cut costs by denying basic benefits, price discriminating based on age and health status, and refusing coverage to older individuals and those with preexisting conditions. As a result, they leave enrollees without benefits that Congress deemed essential and disproportionately draw young, healthy individuals out of the “single risk pool” that Congress deemed critical to the success of the ACA’s statutory scheme. 42 U.S.C. § 18032(c)(1). The Supreme Court has instructed courts to interpret the ACA’s provisions in a manner “consistent with . . . Congress’s plan.” King v. Burwell, 135 S. Ct. 2480, 2496 (2015). Because the Rule flies in the face of that plan by expanding a narrow statutory exemption beyond recognition to create an alternative market for primary health insurance that is exempt from the ACA’s comprehensive coverage and fair access requirements,I respectfully dissent.
Tuesday, July 14, 2020
Hospitals ordered to bypass CDC with Covid data & report it to HHS
Pandemic kills off health insurance coverage for 5.4 million
The heartlessness of this administration's position, which offers no alternative to the ACA, borders on depravity. The ACA works. Granted, it's not perfect and hasn't been since Day One. Like every other health care plan in the world, the ACA needs to be regularly tweaked to respond to conditions on the ground. But undoing a healthcare program 10 years later, despite substantial public support for it, is the equivalent of using a stick of dynamite to smooth out the edges of a rough plank.
This is the biggest reduction in coverage in our history, according to the NY Times (7/13/20). Meanwhile, back in Washington, Trump's Justice Department filed a brief in the Supreme Court that asks the Court to wipe out the ACA, which would potentially result in:
- millions more being thrown out of the insurance market,
- pulling the rug out from under states that took the U.S. at its word and expanded Medicaid eligibility on the basis of a generous federal match, as well as
- the reversal of such popular policies as:
- coverage for children until age 26,
- protection against discrimination based upon preƫxisting conditions,
- annual and lifetime caps on coverage, and
- rescissions triggered by the filing of claims.
Thursday, July 09, 2020
CDC sticks to its guns on guidelines for school reopenings
Tim Jost's summary of the Supreme Court's decision on contraceptive coverage and the ACA
His short piece for the Commonwealth Fund is a masterpiece in concision.
Wednesday, July 08, 2020
SCOTUS (7-2): Any company that wants to eliminate contraceptive coverage now gets a free pass to do so
In Little Sisters of the Poor Saints Peter and Paul Home v. Pennsylvania, the Court held that the Health Resources and Services Administration -- which the ACA authorized to come up with a list of mandatorily covered FDA-approved drugs and devices -- was also given the power to decide who would be subject to the mandate as well as what the mandate covered. Five justices (Justice Thomas, who wrote the majority opinion, and the four conservative justices everyone assumed would vote to uphold the regulation) agreed that the ACA was clear that HRSA could decide both the who and what questions. Justice Ginsburg, joined by Justice Sotomayor, dissented on the ground that the ACA was clear that HRSA had delegated authority to decide only the what question, not the who question.
Neither the majority nor the dissent mentioned Chevron deference, but Justice Kagan's concurring opinion (joined by Justice Breyer) did. (In their previous lives, both Kagan and Breyer were prominent administrative-law scholars while on the Harvard Law School faculty.) As Kagan wrote, sometimes when she squints real hard, the ACA looks as though its delegation to HRSA is broad enough to include the who question. And other times, the ACA seems to delegate only the what question to HRSA. In other words, either choice would have been a reasonable one for HRSA, in which case Chevron requires deference to the choice made by the agency.
This decision is bad news for women, make no mistake about it. As Lourdes Rivera of the Center for Reproductive Rights stated, "Today’s ruling has given bosses the power to dictate how their employees can and cannot use their health insurance — allowing them to intrude into their employees’ private decisions based on whatever personal beliefs their employers happen to hold."
But this isn't the last word on the subject. The case now goes back to the trial court to decide a potentially dispositive question under the Administrative Procedure Act: Whether the Trump Administration's rule is arbitrary and capricious. Five justices (the liberal/moderates plus Chief Justice Roberts) have recently demonstrated a willingness to hold this Administration's feet to the APA's fire in a few big cases (the citizenship question on the census questionnaire, DACA), and Justice Kagan's concurrence devotes 3-1/2 of its 6-1/2 pages to an analysis of the ways in which the HRSA rule might fail the APA's "arbitrary and capricious" test. They include (bulleted points are quoted from Justice Kagan's opinion]:
- Most striking is a mismatch between the scope of the religious exemption and the problem the agencies set out to address. In the Departments’ [HRSA, which promulgated that rule, and the Departments of Health and Human Services, Labor, and the Treasury, which "incorporated" them] view, the exemption was “necessary to expand the protections” for “certain entities and individuals” with “religious objections” to contraception. 83 Fed. Reg. 57537 (2018). Recall that under the old system, an employer objecting to the contraceptive mandate for religious reasons could avail itself of the “self-certification accommodation.” Upon making the certification, the employer no longer had “to contract, arrange, [or] pay” for contraceptive coverage; instead, its insurer would bear the services’ cost. 78 Fed. Reg. 39874 (2013). That device dispelled some employers’ objections—but not all. The Little Sisters, among others, maintained that the accommodation itself made them complicit in providing contraception. The measure thus failed to “assuage[]” their “sincere religious objections.” 82 Fed. Reg. 47799 (2017). . . . Given that fact, the Departments might have chosen to exempt the Little Sisters and other still-objecting groups from the mandate. But the Departments went further still. Their rule exempted all employers with objections to the mandate, even if the accommodation met their religious needs. In other words, the Departments exempted employers who had no religious objection to the status quo (because they did not share the Little Sisters’ views about complicity). The rule thus went beyond what the Departments’ justification supported --raising doubts about whether the solution lacks a “rational connection” to the problem described. [emphasis added]
- And the rule’s overbreadth causes serious harm, by the Departments’ own lights. In issuing the rule, the Departments chose to retain the contraceptive mandate itself. See 83 Fed. Reg. 57537. Rather than dispute HRSA’s prior finding that the mandate is “necessary for women’s health and well-being,” the Departments left that determination in place. HRSA, Women’s Preventive Services Guidelines (Dec. 2019), www.hrsa.gov/womens-guidelines-2019; see 83 Fed. Reg. 57537. The Departments thus committed themselves to minimizing the impact on contraceptive coverage, even as they sought to protect employers with continuing religious objections. But they failed to fulfill that commitment to women. Remember that the accommodation preserves employees’ access to cost-free contraceptive coverage, while the exemption does not. See ante, at 5–6. So the Departments (again, according to their own priorities) should have exempted only employers who had religious objections to the accommodation—not those who viewed it as a religiously acceptable device for complying with the mandate. The Departments’ contrary decision to extend the exemption to those without any religious need for it yielded all costs and no benefits. Once again, that outcome is hard to see as consistent with reasoned judgment. [emphasis added]
- Other aspects of the Departments’ handiwork may also prove arbitrary and capricious.
- For example, the Departments allow even publicly traded corporations to claim a religious exemption. See 83 Fed. Reg. 57562–57563. That option is unusual enough to raise a serious question about whether the Departments adequately supported their choice. [emphasis added]
- Similarly, the Departments offer an exemption to employers who have moral, rather than religious, objections to the contraceptive mandate. Perhaps there are sufficient reasons for that decision—for example, a desire to stay neutral between religion and non-religion. See 83 Fed. Reg. 57603–57604. But RFRA cast a long shadow over the Departments’ rulemaking, see ante, at 19–22, and that statute does not apply to those with only moral scruples. So a careful agency would have weighed anew, in this different context, the benefits of exempting more employers from the mandate against the harms of depriving more women of contraceptive coverage. In the absence of such a reassessment, it seems a close call whether the moral exemption can survive. [emphasis added]
Monday, July 06, 2020
The Virus Rolls Along; Nurses are in Shorter Supply than Equipment
The Republican members of Congress and the Texas legislature -- including Lt. Gov. Dan Patrick -- who resist orders to wear face masks in public as unconstitutional need to have an adult explain the constitution to them. The power of the state to impose mandatory public-health requirements on citizens was upheld in 1905 by a conservative Supreme Court of the United States in Jacobson v. Massachusetts. The Court agreed that an exception could be made when the public-health measure in question (smallpox vaccination) constituted a medical threat to an individual, but otherwise, reasonable public-health mandates do not violate the due process clause of the Constitution.
Saturday, July 04, 2020
New FTC-DOJ Guidelines on Vertical Mergers
Follow-up on Haavi Morreim's post re: triage protocols
As an attorney and emergency physician practicing in Arizona, Texas, and Colorado, your bottom-line prediction is correct. It is not within our DNA to ration healthcare. Our medical community is extremely resourceful and generous sharing resources within the state and across state lines. If the patient reasonably needs something, we find a way to get it for them. On my last shift this week, I transferred a patient hundreds of miles away via fixed wing aircraft to get the ICU resources they needed. Our hospital had run out of remdesivir as well. This was an intubated 67 year old hispanic gentlemen with COVID with a history of diabetes, hypertension, hypercholesterolemia, and a prior coronary by-pass surgery. The discussion of this patient's comorbidities was never raised when deciding to push forward with advanced medical care. The states can enact rationing of resource protocols, but the physicians are not necessarily going to adhere to them. Just like the minority patients have a distrust of the healthcare system, the medical community has a general distrust that they will NOT be legally protected if these rationing algorithms need to be instituted.
Triage Protocols and Disparate Racial Impact
Issues of triage and rationing in Covid-19 have been discussed extensively within the bioethics community. One prominent protocol (adapted and/or adopted at many sites) aims to maximize lives saved, and also life-years saved; additionally it emphasizes transparency with both the community and the patient/family. The authors of these protocols have strived mightily to achieve something intellectually satisfying, ethically excellent.
A major flaw has been that, to maximize life-years saved, we look to co-morbidities. So guess which communities have the highest rates of co-morbidity - - yes, it's minority communities. Add to this the fact that the SOFA score these protocols use is well-acknowledged not to be highly accurate in predicting mortality ("yes we know, but it's the best we have").
And now add in the huge mistrust that many minority communities have for the healthcare establishment. At the front end, that mistrust has many in these communities reluctant to be tested at all (fear that "you're putting the virus on that swab so you can give me the disease" has been documented) - - and indeed, sometimes reluctant to seek regular care (my pediatrics colleagues find some of their minority mothers reluctant to accept routine vaccinations for their children, citing fear that the vaccines now have the virus inserted into them).
And now add in transparency + that mistrust. We're supposed to tell a minority family "your dad won't be intubated because he doesn't meet our criteria." "Our criteria . . . " So we (the ones they mistrust) will supposedly assure them "our criteria" are racially neutral. But in fact they are not. Check out NEJM, online June 18: Vyas et al, "Hidden in Plain Sight - Reconsidering the Use of Race Correction in Clinical Algorithms" (attached). It has long been documented that racial minorities receive less care, on many fronts. This piece explains part of the reason why. Minority distrust of the healthcare system is not some sort of mindless, baseless paranoia.
My prediction -- and what has actually happened, so far, across the country -- is that healthcare providers will not actually implement these protocols. They will find another vent, split a vent 2 or 4 ways, retrain another nurse . . . do whatever it takes to avoid this sort of rationing. And they will be right to do that.
Where is OSHA? AWOL, apparently
Thanks to Feedspot
Friday, July 03, 2020
Heading in the wrong direction
American Airlines is dropping the ball big-time
Thursday, July 02, 2020
Medicaid Expansion in Oklahoma and North Carolina (sort of) -- What's Up, Texas?
Oklahomans voted Tuesday to alter their state constitution to expand Medicaid over nearly a decade of opposition by Republican governors, making their state the first to widen the safety-net insurance program as the coronavirus pandemic steals jobs and health benefits.
The expansion’s approval, by a slender margin, means that an estimated 250,000 additional Oklahoma residents will be eligible for the public insurance, including nearly 50,000 who have lost coverage as unemployment has soared this year.And from The Raleigh News & Observer (7/2/2020), news that the governor of North Carolina has signed a bill to create a private Medicaid managed care option sometime between now and July 2021. The devil's in the details, and Medicaid managed care is notoriously difficult to implement, but the move is being hailed as a first step toward Medicaid expansion.
Meanwhile Texas -- with the highest rate of uninsured persons in the country -- continues to freeze out 1 million people who would be covered if the state were to join 38 other states (including deep red Oklahoma) and expand eligibility requirements (with generous federal matching funds) pursuant to the Affordable Care Act. (Texas Tribune, 2/27/20).
Racism and COVID-19
COVID-19 has affected an estimated 10.7 million people, resulting in an estimated half a million deaths globally, including more than 128,000 deaths in the US. As the COVID-19 pandemic unfolds, stark disparities in infection and mortality risk along racial lines have emerged.
Understanding and addressing racial disparities in COVID-19 requires attention to the root causes of health disparities—and, in particular, to the health impacts of racism. Racism, be it overt, structural, or environmental, is an undeniable part of the United States’ history and present.
Writing on Health Affairs Blog, researchers and providers explore the intersections of racism, health disparities, and COVID-19.
Dismantling health care inequities will require addressing the structural racism at the root of both COVID-19 disparities and the murders of George Floyd and other Black Americans, Alexander Bryan and coauthors write.
Sandra Soo-Jin Lee and coauthors say the COVID-19 recovery phase presents “a rare and critical opportunity” to pursue audacious policies that dismantle structural inequities and address structural racism, including redirecting state spending on prisons to public health.
Despite racism’s alarming impacts on health and health care, preeminent scholars and the journals that publish them, including Health Affairs, routinely fail to interrogate racism as a critical driver of racial health inequities, Rhea Boyd and coauthors write.
Drawing lessons from Critical Race Theory, Michelle Morse and colleagues argue that the COVID-19 crisis offers a unique opportunity to mobilize US physicians to advocate for progressive social policies that dismantle structural racism and structure our society more equitably.
Acknowledging the urgency of both health and racial justice in this moment, Sheila Foster and coauthors set forth a legal agenda to fight the health effects of racism in housing, policing, the environment, and other areas.
As Health Affairs Editor-In-Chief Alan Weil wrote recently, the legacy of racism “is baked into our institutions, our thinking, and our policies.” Racism must be explored as a key driver of health outcomes and health disparities.
Follow the conversation on Twitter @Health_Affairs.
Wednesday, July 01, 2020
Public Health System in Tatters
From Kaiser Health Network (KHN) and the Associated Press (AP):Hollowed-Out Public Health System Faces More Cuts Amid Virus
By Lauren Weber and Laura Ungar and Michelle R. Smith, The Associated Press and Hannah Recht and Anna Maria Barry-Jester
The U.S. public health system has been starved for decades and lacks the resources necessary to confront the worst health crisis in a century. An investigation by The Associated Press and KHN has found that since 2010, spending for state public health departments has dropped by 16% per capita and for local health departments by 18%. At least 38,000 public health jobs have disappeared, leaving a skeletal workforce for what was once viewed as one of the world’s top public health systems. That has left the nation unprepared to deal with a virus that has sickened at least 2.6 million people and killed more than 126,000.Here are six key takeaways from the KHN-AP investigation:
- Since 2010, spending for state public health departments has dropped by 16% per capita, and for local health departments by 18%. Local public health spending varies widely by county or town, even within the same state.
- At least 38,000 state and local public health jobs have disappeared since the 2008 recession, leaving a skeletal workforce in what was once viewed as one of the world’s top public health systems.
- Nearly two-thirds of Americans live in counties that spend more than twice as much on policing as they spend on non-hospital health care, which includes public health.
- More than three-quarters of Americans live in states that spend less than $100 per person annually on public health. Spending ranges from $32 in Louisiana to $263 in Delaware.
- Some public health workers earn so little that they qualify for government assistance. During the pandemic, many have found themselves disrespected, ignored or even vilified. At least 34 state and local public health leaders have announced their resignations, retired or been fired in 17 states since April.
- States, cities and counties whose tax revenues have declined during the current recession have begun laying off and furloughing public health staffers. At least 14 states have cut health department budgets or positions, or were actively considering such cuts in June, even as coronavirus cases surged in several states.
Tuesday, June 30, 2020
Nero + Fiddle = Covid-19 disaster
Breaking News: Dr. Anthony Fauci warned the U.S. could see 100,000 new coronavirus cases a day, citing surges that put “the entire country at risk.” “It could get very bad,” he said.Watch his Senate testimony live here.
Commentary on June Medical Services v. Russo
They're right to be worried. Justice Roberts made it perfectly clear that on the merits he believes Louisiana was within its rights to require doctors who perform abortions to have admitting privileges in a nearby hospital.
This, of course, is a position the Court rejected four years ago in Whole Women's Health, which involved a nearly identical Texas requirement (and from which CJ Roberts dissented). But doing the math in 2020, there are now five justices who believe Whole Women's Health was incorrectly decided. Chief Justice Roberts' concurring opinion yesterday was based on the slenderest of reeds -- stare decisis -- and, although it provided the fifth vote to doom the Louisiana law, clearly signaled that a majority of the Court is open to an interpretation of Casey's "undue burden" test that allows states to impose draconian and unjustifiable burdens on a woman's right to choose.
The Roe/Casey consensus hangs by the slenderest of threads.
One pill retails for $15.98 or $0.11: Who decides?
The pharmacy tech took pity on me and said, "Let's see if we can get you a better price on that." Ten minutes later, he found a manufacturer's discount that's available for Blue Cross/Blue Shield subscribers, and now my co-pay (for this 90-day supply as well as each of the next three 90-day supplies): $10.00. That's not a typo; that's ten bucks.
Total one-year savings off the list price equals $5,711.92 (who pays that? people with no insurance, that's who), and total one-year savings off my co-pay amount equals $1,680 (and who pays that? my employer (SMU) and fellow BC/BS subscribers (or at least the ones in the SMU health plan). On a personal note, I really owe that Tom Thumb pharmacy tech. On a more meta level: Would anyone design a health care system this random and capricious?
Sunday, May 03, 2020
Liability protection for employers in a post-pandemic world
Monday, April 27, 2020
A Victory for the ACA in the Supreme Court
Tuesday, March 17, 2020
Smart comments on responding to the coronavirus pandemic
Monday, March 02, 2020
Covid-19 and politics
Our patchwork "system" of health care
- CHS to end inpatient care at 2 Florida hospitals Full story
- Texas health system files for bankruptcy, owes BCBS $29M Full story
- Children's Hospital of Philadelphia pumps $3.4B into expansion Full story
SCOTUS to review 5th Circuit's bizarro-world decision in the ACA case
California v. Texas
Docket No. 19-840
Issues: (1) Whether the individual and state plaintiffs in this case have established Article III standing to challenge the minimum-coverage provision in Section 5000A(a) of the Patient Protection and Affordable Care Act (ACA); (2) whether reducing the amount specified in Section 5000A(c) to zero rendered the minimum-coverage provision unconstitutional; and (3) if so, whether the minimum-coverage provision is severable from the rest of the ACA.
Sunday, January 19, 2020
WaPo: The health care industry is letting surgeons behave like muggers
It’s not only surgeons, of course, but this Washington Post story lays out the problem pretty clearly. Surprise billing can happen whenever a cross-covering physician is out-of-network. A colleague checked before scheduling spine surgery to make sure the scheduled anesthesiologist was in-network. Absolutely, the office manager replied. Not so much the day of surgery, when a different — out-of-network — anesthesiologist was substituted in at the last minute. That’s how a $1500 bill became a $15,000 one.
There is only word for a fractured health care “system” this unresponsive to the needs of patients and the requirements of contract law: broken.
Friday, January 03, 2020
20 Democratic-led states ask SCOTUS to review the 5th Circuit's ACA opinion
There's every reason to think the Supreme Court will decline the request: the decision wasn't final (there was a remand back to Dist. J. Reed O'Connor to reconsider the severability issue), there's no circuit conflict, and it would be a huge partisan issue during a presidential election year. On the other hand, four justices can grant review, so the five conservatives can't stop four more moderate-to-liberal justices from accepting review. Even if that happens, there are a number of obstacles between the grant and an opinion on the merits, including a DIG (dismissal as improvidently granted). Stay tuned . . .
Link to Professor Bagley‘s commentary on Fifth Circuit ACA opinion
Wednesday, January 01, 2020
More on the Fifth Circuit’s partisan hatchet job in the ACA case
Monday, December 30, 2019
2019 - Going, going, gone . . .
First, on Dec. 18 (revised Dec. 20) the Fifth Circuit decided that the ACA's individual mandate was unconstitutional because, once Congress repealed the tax/penalty the mandate lost its constitutional footing. It's a mechanistic (which is to say either naive or political, and "naive" isn't a word lightly to be applied to these judges) performance. The court's reason tracks that of District Judge Reed O'Connor in his December 2018 opinion (which was roundly and soundly criticized): The Supreme Court's 2012 decision upholding the ACA for the most part (with the major exception of the Medicaid expansion provision) held that the Taxing Clause provided the necessary constitutional hook for the individual mandate. Take away the tax/penalty and you take away that hook, as Congress did in 2017 (Pub. L. No. 115-97, § 11081, 131 Stat. 2054, 2092 (2017); see also 26 U.S.C. § 5000A(c)), eff. January 2019. In the view of the Fifth Circuit majority, once there's no tax involved, the mandate is an act of pure coercion, to which the court takes objection. As Nick Bagley at Michigan has argued (see my next post), it's hard to see how taking away the tax/penalty makes the mandate more coercive than it was with the mandate (which the Supreme Court upheld in 2012).
Second, the Fifth Circuit's opinion (above) is notable for what it didn't do: It didn't affirm Judge O'Connor's conclusion that, because the individual mandate no longer has a constitutional basis, the entire ACA must be thrown out as well. Judge O'Connor's sweeping decision was based upon what he deemed to be the inseverability of the individual mandate from the rest of the ACA. Unfortunately, the appellate court didn't reverse Judge O'Connor on this point, even though this part of Judge O'Connor's opinion is worse than his analysis of the mandate question; rather, it merely remanded the case back to the judge for reconsideration. Katie Keith has a nice summary of the implications of this decision in Health Affairs.
Third, on the Medicaid expansion front, four more states came aboard in 2019 (more or less -- political and legal prospects are not crystal clear). This leaves 14 states that haven't adopted the expansion, leaving billions of federal dollars on the table that could be paying for low-income health care.
Fourth, litigation and growing uncertainty surround the formerly settled concept of "brain death." Thad Pope does a good job of following the developments over on the Medical Futility Blog.
Fifth, the Supreme Court will hear oral argument on March 4, 2020, in two abortion cases. This is from SCOTUSBlog:
June Medical Services LLC v. Gee, No. 18-1323 [Arg: 3.4.2020] |
Gee v. June Medical Services, LLC, No. 18-1460 [Arg: 3.4.2020] |
Wednesday, August 15, 2018
Physician-assisted suicide (or Aid-in-Dying) ain't easy
‘No One Is Ever Really Ready’: Aid-In-Dying Patient Chooses His Last Day
JoNel Aleccia, Kaiser Health NewsIn the end, it wasn’t easy for Aaron McQ to decide when to die.
The 50-year-old Seattle man — a former world traveler, triathlete and cyclist — learned he had leukemia five years ago, followed by an even grimmer diagnosis in 2016: a rare form of amyotrophic lateral sclerosis, or ALS.
An interior and urban designer who legally changed his given name, McQ had been in pain and physical decline for years. Then the disease threatened to shut down his ability to swallow and breathe.
“It’s like waking up every morning in quicksand,” McQ said. “It’s terrifying.”
Last fall, McQ decided to use Washington state’s 2009 Death With Dignity law to end his suffering. The practice, approved in seven states and the District of Columbia, allows people with a projected six months or less to live to obtain lethal drugs to end their lives.
Although the option was legal, actually carrying it out was difficult for McQ, who agreed to discuss his deliberations with Kaiser Health News. He said he hoped to shed light on an often secretive and misunderstood practice.
“How does anyone get their head around dying?” he said, sitting in a wheelchair in his Seattle apartment in late January.
More than 3,000 people in the U.S. have chosen such deaths since Oregon’s law was enacted in 1997, according to state reports. Even as similar statutes have expanded to more venues — including, this year, Hawaii — it has remained controversial.
California’s End of Life Option Act, which took effect in 2016, was suspended for three weeks this spring after a court challenge, leaving hundreds of dying patients briefly in limbo.
Supporters say the practice gives patients control over their own fate in the face of a terminal illness. Detractors — including religious groups, disability rights advocates and some doctors — argue that such laws could put pressure on vulnerable people and that proper palliative care can ease end-of-life suffering.
Thin and wan, with silver hair and piercing blue eyes, McQ still could have passed for the photographer’s model he once was. But McQ’s legs shook involuntarily beneath his dark jeans and his voice was hoarse with pain during a three-hour effort to tell his story.
Last November, doctors told McQ he had six months or less to live. The choice, he said, became not death over a healthy life, but a “certain outcome” now over a prolonged, painful — and “unknowable” — end.
“I’m not wanting to die,” he said. “I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”
In late December, a friend picked up a prescription for 100 tablets of the powerful sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.
“I was not relaxed or confident until I had it in my cupboard,” McQ said.
At the time, he intended to take the drug in late February. Or maybe mid-March. He had wanted to get past Christmas, so he didn’t ruin anyone’s holiday. Then his sister and her family came for a visit. Then there was a friend’s birthday and another friend’s wedding.
“No one is ever really ready to die,” McQ said. “There will always be a reason not to.”
Many people who opt for medical aid-in-dying are so sick that they take the drugs as soon as they can, impatiently enduring state-mandated waiting periods to obtain the prescriptions.
Data from Oregon show that the median time from first request to death is 48 days, or about seven weeks. But it has ranged from two weeks to more than 2.7 years, records show.
Neurodegenerative diseases like ALS are particularly difficult, said Dr. Lonny Shavelson, a Berkeley, Calif., physician who has supervised nearly 90 aid-in-dying deaths in that state and advised more than 600 patients since 2016.
“It’s a very complicated decision week to week,” he said. “How do you decide? When do you decide? We don’t let them make that decision alone.”
Philosophically, McQ had been a supporter of aid-in-dying for years. He was the final caregiver for his grandmother, Milly, who he said begged for death to end pain at the end of her life.
By late spring, McQ’s own struggle was worse, said Karen Robinson, McQ’s health care proxy and friend of two decades. He was admitted to home hospice care, but continued to decline. When a nurse recommended that McQ transfer to a hospice facility to control his growing pain, he decided he’d rather die at home.
“There was part of him that was hoping there were some other alternative,” Robinson said.
McQ considered several dates — and then changed his mind, partly because of the pressure that such a choice imposed.
“I don’t want to talk about it because I don’t want to feel like, now you gotta,” he said.
Along with the pain, the risk of losing the physical ability to administer the medication himself, a legal requirement, was growing.
“I talked with him about losing his window of opportunity,” said Gretchen DeRoche, a volunteer with the group End of Life Washington, who said she has supervised hundreds of aid-in-dying deaths.
Finally, McQ chose the day: April 10. Robinson came over early in the afternoon, as she had often done, to drink coffee and talk — but not about his impending death.
“There was a part of him that didn’t want it to be like this is the day,” she said.
DeRoche arrived exactly at 5:30 p.m., per McQ’s instructions. At 6 p.m., McQ took anti-nausea medication. Because the lethal drugs are so bitter, there is some chance patients won’t keep them down.
Four close friends gathered, along with Robinson. They sorted through McQ’s CDs, trying to find appropriate music.
“He put on Marianne Faithfull. She’s amazing, but, it was too much,” Robinson said. “Then he put on James Taylor for, like, 15 seconds. It was ‘You’ve Got a Friend.’ I vetoed that. I said, ‘Aaron, you cannot do that if you want us to hold it together.’”
DeRoche went into a bedroom to open the 100 capsules of 100-milligram secobarbital, one at a time, a tedious process. Then she mixed the drug with coconut water and some vodka.
Just then, McQ started to cry, DeRoche said. “I think he was just kind of mourning the loss of the life he had expected to live.”
After that, he said he was ready. McQ asked everyone but DeRoche to leave the room. She told him he could still change his mind.
“I said, as I do to everyone: ‘If you take this medication, you’re going to go to sleep and you are not going to wake up,’” she recalled.
McQ drank half the drug mixture, paused and drank water. Then he swallowed the rest.
His friends returned, but remained silent.
“They just all gathered around him, each one touching him,” DeRoche said.
Very quickly, just before 7:30 p.m., it was over.
“It was just like one fluid motion,” DeRoche said. “He drank the medication, he went to sleep and he died in six minutes. I think we were all a little surprised he was gone that fast.”
The friends stayed until a funeral home worker arrived.
“Once we got him into the vehicle, she asked, ‘What kind of music does he like?’” Robinson recalled. “It was just such a sweet, human thing for her to say. He was driving away, listening to jazz.”
McQ’s friends gathered June 30 in Seattle for a “happy memories celebration” of his life, Robinson said. She and a few others kayaked out into Lake Washington and left McQ’s ashes in the water, along with rose petals.
In the months since her friend’s death, Robinson has reflected on McQ’s decision to die. It was probably what he expected, she said, but not anything that he desired.
“It’s really tough to be alive and then not be alive because of your choice,” she said.
“If he had his wish, he would have died in his sleep.”
Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.
Tuesday, August 14, 2018
Billion-dollar Medicare fraud case in Miami on the ropes
https://www.miamiherald.com/news/local/article216589740.html
Saturday, July 28, 2018
First: smoke and mirrors. Followed by: pure bunkum.
First, the rules disappointed even some of its most ardent supporters by imposing limits that will increase employers' costs for too little in return.
Second, despite the administration's claim that AHPs will provide drastically improved coverage for far less cost than "the failed Obamacare, the exact opposite is true and always has been. The Democrats correctly label the AHPs "junk" that workers will find offers skimpy-to-no coverage for premiums that have been poured down the drain. This is precisely the problem that the ACA's minimum health benefits were intended to cure.
Third, President Trump is now hailing the AHP rule a raging success. At an Iowa roundtable with his HHS secreatry, Alex Acosta, the president had this to say:
“Alex, I hear it’s like record business that they’re doing,” Trump said of the plans, which aren't available for another five weeks. “We just opened about two months ago and I’m hearing that the numbers are incredible -- the numbers of people getting really, really good healthcare instead of Obamacare, which is a disaster.”Sounds good, eh? The only glitch is that the plans won't be available for purchase until September. If there are "incredible" numbers in July, imagine how huge the sales will be when the plans actually become available in September.
Wednesday, July 25, 2018
Why is this man smiling?
Lots of us who supported the ACA nearly a decade ago knew no law would be perfect. We also knew that experience with the consequences -- intended and otherwise -- would require near-constant revision. When it comes to health reform, there's no such thing as "one and done." But what is it about the poorest 10+% of the population getting health care that drives lawmakers from "fix it" to "kill it"? From a cost-benefit perspective, which should appeal to business-oriented (and -financed) legislators, our health care system ranks behind that of every other developed country in the world. Our administrative costs are many multiples of those of other nations. "Private profit above public welfare" is an old story, but when the result is avoidable morbidity and premature death for neighbors, we need a new narrative. The ACA was a step in the right direction, but try telling that to the political right!
Thursday, July 19, 2018
When futility itself is futile
Monday, July 16, 2018
Johnson & Johnson mega-verdict
"Johnson & Johnson should ready itself for a flood of new lawsuits after a jury ordered the company to pay $4.69 billion to 22 women who blamed their ovarian cancer on asbestos in its talc products, legal experts say.
Wednesday, July 11, 2018
Some Democrats, still seething at the shabby treatment Chief Judge Merrick Garland (Chief Judge, mind you, of the same court upon which Judge Kavanaugh sits), are apparently inclined to vote against confirming Judge Kavanaugh on a sort of sauce-for-the-goose theory. CJ Garland is, if anything, even more experienced in all manner of government lawyering than is Judge Kavanaugh, and Leader McConnell's justification for denying President Obama his appointment barely passed the smile test (and wasn't much better when, years earlier, it had been proposed by Sens. Schumer and Biden). If the Democrats vote against Kavanaugh on this basis, it would be for a primarily institutional reason, not necessarily on the merits of the nominee. (Although it would be hard to argue that misgivings about Kavanaugh as a Supreme Court Justice would be irrelevant to such a vote.)
On the merits, though, opponents have been kicking up all kinds of dust. Kavanaugh, Trump, and Trump's press office insist that Roe v. Wade wasn't discussed before the nomination. Cynics might say that it didn't need to be in order for the president to know what he was getting. Maybe. Kavanaugh was one of 13 authors of a massive tome entitled The Law of Judicial Precedent in 2016, and by most accounts in that treatise, standard principles of stare decisis seem to support retention of the Roe precedent (at least as modified by the Webster case).
The argument I don't quite get is that Kavanaugh should be denied a seat on the Court because he would probably be an enemy of the Affordable Care Act. This argument seems to be based on a serious misreading of his dissent in the case that upheld the ACA in his court while a similar case was on its way to the Supreme Court, which also upheld the ACA the next year.
Two things are worthy of note: (1) His dissent was based upon the Anti-Injunction Act, which denies the federal courts jurisdiction to issue an order enjoining the assessment or collection of a tax. Challenges to a tax, as a result, can only be brought after the tax has been paid. And in the case of the ACA, nobody had been assessed a penalty by the IRS for violating the individual mandate. (2) In the same opinion, Kavanaugh pointed out that if the penalty (which the Obama administration tried to sell to Congress as "not a tax") were re-enacted as a tax, it would have fallen comfortably within Congress's taxing and spending powers. In fact, that is precisely how Chief Justice Roberts managed the next year to uphold the individual mandate. Without waiting for Congress to re-enact anything, Roberts characterized the "penalty" (the actual term in the ACA) as a "tax" and upheld the constitutionality of the individual mandate on that basis. Far from being a foe, it is possible that Kavanaugh was instead throwing out a lifeline to the Court to save one of the most contentious (and probably the most reviled) provision of the ACA. [Postscript: The Washington Post's Colby Itkowitz and others agree with me on this.)
We will hear much about Judge Kavanaugh's record in the months that follow his nomination. The emerging picture is of a judge who supports executive power and frequently opposes what he regards as administrative agencies' "overreach." Both of these strands of his judicial philosophy (and, more broadly, of his theory of government) might lead him to be skeptical of Obama-era healthcare regulations and to be more favorably inclined toward Executive Orders that seek to cut back on key aspects of that law's implementation. EOs have turned out to be one of President Trump's favorite actions (despite his criticism during the 2016 campaign of Pres. Obama's use of EOs). His ACA-limiting EOs include Nos. 13765 and 13813.
If this is what opposition to Judge Kavanaugh comes down to, he should be confirmed. He's conservative, yes. And yes, he probably wouldn't have voted with the Roe majority in 1973 (which is not the same as saying he would vote to overrule it in 2018 or later). But he's getting a bum rap on his ACA vote. He's also superbly qualified in terms of education and experience.
And elections have consequences. The Republicans have the White House and Congress. If they want to solidify a conservative majority on the Court, one judicial appointment at a time, they can do that.
Friday, May 25, 2018
Hoping to visit this blog more than once every four years!
Wednesday, May 28, 2014
American University's 7th annual Health Law & Policy Summer Institute
“American University Washington College of Law’s 7th annual Health Law & Policy Summer Institute will run from June 16 to June 28. The Institute’s flexible schedule includes day, evening, and one online course. Faculty and guest lecturers bring tremendous experience, and courses are designed to combine both theory and practice so that participants gain a well-balanced understanding of each topic. All of the courses are open to law students and lawyers, and several are open to non-attorneys as well. This year’s courses focus on a variety of topics, including pharmaceutical law, bioethics, healthcare fraud and compliance, healthcare antitrust, and the economics of healthcare reform. To learn more about the Institute, please visit http://www.wcl.american.edu/health/institute/ or contact health@wcl.american.edu."It looks like a terrific line-up of courses and knowledgeable speakers. Thank you, Matt, for bringing this to my attention.
P.S. As careful readers of this blog will no doubt have noticed, it's been four years since the last post to this blog. This one instance of breaking radio silence may (or may not) be the rebirth of this blog. Time will tell . . . .
Friday, December 31, 2010
Sunday, September 27, 2009
Dallas Morning News' excellent series on health care costs (and other things that matter)
Sun., 9/27: High prices, red tape fuel popular Dallas doctor's move to Temple
Sun., 9/27: Focus on cost efficiency, quality pays off for Temple-based Scott & White Healthcare
Sun., 9/27: No country has perfect system, but there are lessons to learn
Wed., 9/23: Critics see home health care boom as wasteful, but others tout benefits
Tue., 9/22: Cost of Care: Medical imaging a growth industry, but some say unneeded scans increase expenses
Mon., 9/21: Cost of Care: Doctor-owned hospitals a lucrative practice, though opinions split on benefits
Mon., 9/21: Cost of Care: Baylor Medical Center at Frisco poised to net big payoff for doctor-investors
Sun., 9/20: Cost of Care: Dallas sees no relief in health care expenses as competition drives up costs
Sun., 9/20: Feeling no relief in Dallas: City outspends most on medical care
Patients' stories:
Regional disparities in Medicare spending: http://www.dartmouthatlas.org/interactive_map.shtm