Endocrine Ethics Blog

2019 marked a number of 50^th anniversaries in the field of bioethics. Two of the biggest bioethics anniversaries included the 50^th anniversary of Elizabeth Kubler-Ross’ On Death and Dying, which laid the groundwork for all end of life discussions and care delivered today (see: https://www.tandfonline.com/eprint/UYRGE3RPJPEKCDNHSIET/full?target=10.1080/15265161.2019.1674410)

Another major 50^th anniversary was the founding of The Hastings Center (see: https://www.thehastingscenter.org/who-we-are/), which was the first bioethics think tank that began to publish and articulate important concepts for bioethics, and eventually led the field into various subspecializations, such as transplant ethics, research ethics or pediatric ethics – in which practitioners and scholars began to formulate applied ethical frameworks for particular fields. Similarly, Endocrine Ethics is a new subspecialization (see further).

The American Journal of Bioethics listed the top 10 bioethics stories of the years here (see: http://www.bioethics.net/2019/12/top-ten-bioethics-stories-of-2019/), many of which directly affect the practice of endocrinology, including the sweeping abortion restrictions that are now affecting the practice of reproductive endocrinologists who may have to rethink more preventative strategies, such as aggressive counseling about hormonal contraception, and creating greater restrictions regarding fertility treatment and the creation of high risk pregnancies that may not be allowed to be terminated in multiple states. The American Society of Reproductive Medicine strongly opposes so-called “personhood” laws that frame these new restrictions (see: https://www.asrm.org/about-us/media-and-public-affairs/public-affairs/asrm-position-statement-on-personhood-measures/).

Notwithstanding, the biggest Endocrine Ethics story of the year is also its oldest – access to insulin.The New England Journal of Medicine covered this story in November 2019 (see: https://www.nejm.org/doi/full/10.1056/NEJMp1909402), which is really more about the failings of the American healthcare system (which practices “healthism” and “wealthcare”) than it is about a diabetes crisis. The crisis is from the high cost of insulin leading to the rationing of insulin, which has put thousands of insulin-dependent diabetes patients at risk of dying from a disease we’ve been able to treat since 1921. In fact, access to insulin was one of the first uniquely endocrine ethics issues that emerged in the 20^th century, and it seems we’ve come full circle. The precedent set by the co-discoverers of insulin (a wild research ethics story in its own right) of making insulin widely accessible by selling the patent for $1 to the University of Toronto,  led to widespread accessibility of other wonder drugs years later, including the polio vaccine.

Other endocrine ethics stories dominating the news include the continuing controversies over treating well-differentiated thyroid cancers and Graves’ disease and a concerning spread of disinformation surrounding so-called “risks” of radioactive iodine that are unsubstantiated (see, for example: http://am2016.aace.com/presentations/thursday/T22%20&%20T53/ain_radioiodine_remnant_%20ablation.pdf). This has led to disparate standards of care, and many seasoned thyroidologists’ warning of the coming tsunami of patients who will present with iodine non-avid thyroid cancers because of the withholding of the standard of care. 

Finally — as you can see, Endocrine Ethics Blog was a little less active in 2019 than in previous years, but that’s because one of the biggest Endocrine Ethics stories this year involved me: I founded in October 2019, along with three other colleagues, the first professional society for endocrine ethics issues: The Endocrine Ethics Association (see: www.endocrineethics.org). You will hear more about this organization in conjunction with this year’s Endocrine Society Meeting in March 2020. 

In 2020, here’s to solving the insulin crisis so that thousands of insulin-dependent diabetes patients can see clearly for as long as possible. 

This month started out with a remarkable advance directive on display: John McCain’s funeral, which he meticulously planned and choreographed. Bioethicists frequently recommend that patients and their families fill out advance directives to guide end of life care. But an important part of death and dying is the closure that comes with marking a death: burial and ritual. How typical is it for those at the end of life to plan their funerals? Well, funeral directives are becoming more common, and there are different state laws surrounding how much control you have over your funeral in every state. In the State of Arizona, laws surrounding self-directed funerals are very specific, and John McCain surely was familiar with them. In Arizona there are legal protections that ensure you can control your burial and and funeral proceedings. (See: https://funerals.org/?consumers=legal-right-make-decisions-funeral).

John McCain’s beautiful funeral was a unique example of how end of life wishes are not completed with one’s last breath; Senator McCain was able to speak to the country directly through surrogate voices that clearly knew his values, wishes and preferences.  Aside from his tragic illness and death from glioblastoma – passing on the 9^thanniversary of Senator Ted Kennedy from the same illness – we knew that John McCain had moral distress over what he must have viewed as a growingly mean-spirited country and congress  that was becoming crippled. John McCain’s advance directive was intended to remind the country about moral community and moral leadership. Remarkably, he clarified in his arrangements that a sitting President of the United States was not invited, and not be allowed to speak on his behalf. Instead, he chose the last two Presidents of the United States, indicating that he does not recognize the sitting President in that same role. By doing so, John McCain gave the country something it hasn’t had in a long time: a day of silence from vitriol, and a day to remember what moral leaders supposed to look like. He openly shamed his Republican colleagues in Congress by forcing them to listen to voices of reason, but more importantly, to rejoin the moral community.

John McCain’s funeral can be used as an example in end of life discourse that crucial conversations and closure can still go on, and patients can still control what happens and what is said in their name. The “Who Will Come to my Funeral” scenarios that often occur when patients are confronted with life-threatening illnesses can also be about “Who should NOT Attend my funeral”.  Undoubtedly, Senator McCain envisioned that his passing would prompt a national mourning befitting of a Presidential Eulogy. Once he considered that, he took control of which Presidents would deliver his eulogies. In the end, it was his daughter who said it best: “John McCain was not defined by prison, by the navy, by the senate, by the Republican party or by any single one of the deeds in his absolutely extraordinary life. John McCain was defined by love.”

Based on the coverage and analysis of his funeral, it seems the country heard his voice loud and clear:

https://www.washingtonpost.com/politics/mccains-funeral-was-a-melancholy-last-hurrah-for-whats-been-lost-in-trump-era/2018/09/01/156784c6-ad46-11e8-b1da-ff7faa680710_story.html?utm_term=.0d63a5382dca

https://www.esquire.com/news-politics/politics/a22893069/john-mccain-funeral-service/

https://www.theatlantic.com/politics/archive/2018/09/inside-the-pomp-and-circumstance-at-john-mccains-funeral/569197/

This month, the Trump Administration introduced a mechanism through HHS for healthcare providers to object to performing procedures they find morally distressing or objectionable based on their religion, or as reported:  to “ease the way for doctors, nurses or other medical professionals to opt out of providing services that violate their moral or religious beliefs” (See: https://www.washingtonpost.com/news/to-your-health/wp/2018/01/18/new-hhs-civil-rights-division-charged-with-protecting-health-workers-with-moral-objections/?utm_term=.81912e085354).

HHS will soon create the Conscience and Religious Freedom Division — an entire division devoted to conscientious objection.  The vast majority of bioethicists find this announcement to be cause for concern because it introduces further barriers to healthcare for many groups already disenfranchised or vulnerable, including women needing reproductive healthcare or transgender patients.  But it also violates what bioethicists see as clear duties of care inherent in the medical profession (See: https://www.reuters.com/article/us-usa-healthcare-religion/u-s-government-to-shield-health-workers-under-religious-freedom-idUSKBN1F7262).

I have mixed feelings about this new division, which may become a cautionary tale for the Trump Administration. Moral diversity and “moral objection” swings many directions, and by creating an official conscientious objection division, the Trump Administration must now allow for a wide range of moral protections for practitioners.  In some ways, this could provide unanticipated protections for the very groups the Administration seeks to inconvenience.

First, most hospitals already have these institutional policies in place. As a clinical ethicist, I invoke these policies frequently to protect and preserve the moral integrity of healthcare providers involved in care plans they find objectionable. I have rarely invoked these policies, however, for objections on religious grounds. I have mostly used them to relieve moral distress over medically inappropriate care plans in which limits to autonomy have not been properly asserted or championed by the institution, such as in situations where surrogates are demanding treatments that make no medical sense, and practitioners feel they are crossing ethical lines to appease surrogates. I have also invoked these policies to excuse practitioners from being forced to care for patients who have personally threatened them or their families, which sometimes includes situations where patients or surrogates are making personally racist statements, or when hateful misogynists make statements against their female doctors. In the Trump Era, healthcare providers newly exposed to racist comments are immigrants with accents from all parts of the world – many of whom are permanent residents or U.S. citizens.

In many of these cases, conscientious objection has worked well; in most institutional policies, there is a  mechanism for transfer of care or referral, and in extreme situations, transfer care to the Chief Medical Officer. Thanks to the Trump Administration, practitioners who experience racist patients, can now use the HHS’ new division to “object to care” on moral grounds. White supremacist patients, or patients who are anti-immigration, may be in for a shock when their practitioners “object” to caring for them because the patients’ personal views violate their moral integrity. Alternatively, practitioners who don’t believe women are equal based on their religion, for example, may decide that they don’t want to work with female colleagues in a secular environment and invoke “conscientious objection” to having to converse with another female colleague. The Trump Administration may become mired in all kinds of sticky cases arising from conscientious objection that has nothing to do with reproductive care. Could LGBT practitioners “object” to being forced to caring for patients who don’t support LGBT rights? Or, in a politically divisive country, perhaps Democrats can now morally object to caring for Republican patients, or vice versa. What might count as a legitimate claim of moral objection? Good luck with that.

A  2012 law review piece by Paul-Emile suggests that we should make every effort legally and ethically to  accommodate any patient’s request to see a different practitioner — even if the grounds are racist (See: https://www.uclalawreview.org/patients’-racial-preferences-and-the-medical-culture-of-accommodation/) as neither the practitioner nor patient is served when there is a breakdown in patient-practitioner trust.

Transfer of care or referral is an important caveat in any ethical conscientious objection policy, and the HHS’ new division will be no exception. In cases where the objector refuses to transfer care because of claims of “moral complicity”, this is where such policies become unworkable. I’ll be looking carefully for that “parachute clause” in the division’s language.

So, in response to the new HHS entity: conscientious objection swings both ways. Most of the care providers will object to care plans that probably have nothing to do with reproductive care. This new, controversial division may lead to a tsunami of moral assertions that block access to care for its most enthusiastic supporters because they may not realize that some of their own moral assertions may not be shared by the practitioners they will confront in the real world.

This is an “I told you so” that ethicists have seen many times. When you find ethical integrity problems once with an individual – especially a physician — it is indicative of a larger pattern. To that end, Dr. Price’s ethical misconduct surrounding his extravagant travel tastes should come as no surprise to anyone — considering that he already was found to be self-dealing when he was a member of congress. He held stock in drug companies that he personally helped as a legislator. (See: http://www.wsj.com/articles/donald-trumps-pick-for-health-secretary-traded-medical-stocks-while-in-house-1482451061.) Typically, the laws of politics should have prevented his confirmation, but that didn’t happen. He was confirmed as Secretary of HHS by a Republican congress despite his glaring conflicts of interest, questions raised by the Office of Government Ethics (see: http://www.cnn.com/2017/01/18/politics/tom-price-conflicts-interest-oge-ethics-office/index.html), and concerns about his ethical integrity raised during his hearing (see: https://www.nytimes.com/2017/02/10/us/politics/tom-price-health-and-human-services.html). But he was not even unique. Just about everyone in this Administration’s cabinet has something to hide, and is either openly self-dealing or suspected of such. All political ethical norms have been shattered in this Administration, leaving those of us in the ethics business so morally upended, “moral distress” doesn’t seem like an apt definition anymore.

The only thing about Dr. Price’s resignation as Secretary of HHS that is unique is that the laws of political gravity seemed to work in this situation. Secretary Price, who, as it turns out, was not a particularly effective cabinet member, and did not mesh well with the President, was seen as disposable. He made the President look bad, which seems to be the reason he was asked to resign (See: https://www.theatlantic.com/politics/archive/2017/09/tom-price-resigned/541608/). Had the President liked him, and Dr. Price had been successful in helping to gut our healthcare system by leaving millions of Americans at the bottom of the sea, his tenure would have been considered a success, and his travel misdeeds would have surely been excused. I was genuinely concerned that Dr. Price would prove competent in his role, and do the damage he was hired to do (see: http://endocrineethicsblog.org/putting-a-price-on-healthcare/). Dr. Price’s own self-interest and hedonistic tendencies were his Achilles heel. Since he’s an orthopedic surgeon, maybe he can see an orthopedic colleague for that problem.

We will need to do a Price Comparison on his successor, and see if he or she can will end healthcare for millions, or actually heal it, as the Washington Post is hoping for (see: https://www.washingtonpost.com/opinions/the-opportunity-in-tom-prices-resignation/2017/09/30/f4c722f8-a5ee-11e7-b14f-f41773cd5a14_story.html?hpid=hp_no-name_opinion-card-c%3Ahomepage%2Fstory). I predict this Price Fix is only temporary.

As we begin to reflect on the chaos of 2016, there is only one major bioethics story for healthcare providers: the fate of American healthcare access. Again. As December began, the picture for 2017 was beginning to fill in – particularly with the Cabinet pick of Dr. Tom Price as HHS secretary. Here are some alarming facts in a compelling piece published in the New England Journal of Medicine: (See: http://www.nejm.org/doi/full/10.1056/NEJMp1615714)

The authors, who both formerly served as Assistant Secretaries at the Department of HHS, make these points:

• “…Price’s record demonstrates less concern for the sick, the poor, and the health of the public and much greater concern for the economic well-being of their physician caregivers.”
• Price supports changing the Medicare and Medicaid systems so substantially that it would “shift financial risk from the federal government to vulnerable populations.”
• “Price has also been a vociferous opponent of the Affordable Care Act (ACA) and a leader of the repeal-and-replace movement.” Essentially, Price endorses a dismantling of the American healthcare system with a “regressive” plan that “offers much greater subsidies relative to income for purchasers with high incomes and much more meager subsidies for those with low incomes.”

In essence, Price opposes any cost-sharing subsidies, which could “doom millions”. See: https://www.washingtonpost.com/national/health-science/trump-could-quickly-doom-aca-cost-sharing-subsidies-for-millions-of-americans/2016/12/21/05349066-c2fc-11e6-9a51-cd56ea1c2bb7_story.html?hpid=hp_hp-top-table-main_costsharing-10pm%3Ahomepage%2Fstory

Price is a polarizing figure for American doctors. Although the American Medical Association endorsed Dr. Price as a pick, many of its members were dismayed. Over 5,000 doctors have signed a petition opposing him, while many AMA members have spoken out, or not renewed their memberships. (See:

http://www.nytimes.com/2016/12/26/us/tom-price-hhs-donald-trump-cabinet.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=first-column-region&region=top-news&WT.nav=top-news

Price also is a member of the Association of American Physicians and Surgeons (AAPS), which has been coined a “crank medical society” by Scienceblogs.com. The AAPS is noted for its anti-vaccine stance. (See: http://nymag.com/scienceofus/2016/12/tom-price-belongs-to-a-really-scary-medical-organization.html)

Advocates of women’s health are concerned that even the most basic contraception for women would become a challenge because “the extremity of Mr. Price’s views on women’s health.” For example, he was a co-sponsor of legislation that defines life at conception, arguing that “common forms of birth control constitute a murder weapon.” (See: http://www.nytimes.com/2016/12/28/opinion/how-donald-trumps-health-secretary-tom-price-endangers-women.html?action=click&pgtype=Homepage&clickSource=story-heading&module=opinion-c-col-right-region&region=opinion-c-col-right-region&WT.nav=opinion-c-col-right-region&_r=0

It gets worse. Price has alarming conflicts of interest according to a Wall Street Journal Report. He has all kinds of ties to the pharmaceutical industry, having traded over $300,000 in big pharma stock while in Congress. See: http://www.wsj.com/articles/donald-trumps-pick-for-health-secretary-traded-medical-stocks-while-in-house-1482451061

and

https://www.statnews.com/2016/12/02/tom-price-hhs-stock-portfolio/

Of course, the HHS Secretary cannot, alone, repeal the ACA. That is an act of Congress, which has made clear that it’s the first thing on its agenda in 2017. That is sending “red flags” (no – not the Russia hacking thing) across the healthcare spectrum. For example, as the New York Times reported:

“In a letter to Mr. Trump and congressional leaders this month, the two biggest hospital trade groups warned of ‘an unprecedented public health crisis’ and said hospitals stood to lose $165 billion through 2026 if more than 20 million people lose the insurance they gained under the law. They predicted widespread layoffs, cuts in outpatient care and services for the mentally ill, and even hospital closings.” See:

http://www.nytimes.com/2016/12/28/health/hospitals-medicaid-obamacare-trump.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=first-column-region&region=top-news&WT.nav=top-news

It’s clear to any bioethicist that the new GOP-led Congress is about to step into the mire of what scholars call a “wicked problem”. Anyone who looks closely at the muckiness of the U.S. healthcare system will see that there are two options: a market-based system, which basically looks like the ACA, or some form of a single-payer universal healthcare system, which is what every other democracy has. So for the GOP, it’s a wicked problem of BernieCare of ObamaCare, because voters will not like any of the voucher-based plans they have been discussing for years, which do not resolve distributive justice problems.

The GOP Congress, in recognition of this “wicked problem” has come up with a “neither fish nor fowl” solution, called Repeal and Delay. But that has problems, too, according to the Urban Institute, which estimates that “repeal and delay” would “increase the number of uninsured by 4.3 million people near immediately”. (See: https://www.brookings.edu/research/why-repealing-the-aca-before-replacing-it-wont-work-and-what-might/)

As for the Trump voters, they don’t want to see the ACA repealed, either, which makes their vote for Trump perplexing. In two of the poorest states (one of them, mine), the uninsured rate has fallen from 25 percent in 2013 to 10 percent today. One reporter decided to investigate the paradox of the Trump voter and ACA-lover, and took a deep dive into my own state of Kentucky (See: http://www.vox.com/science-and-health/2016/12/13/13848794/kentucky-obamacare-trump.) Voters who understood that their Kentucky healthcare of “Kynnect” was “Obamacare” simply didn’t take Trump seriously about taking it away. They thought he was kidding, proving the adage of “taking him seriously but not literally”. Other voters who love their healthcare in Kentucky, didn’t understand that what they love, is in fact, Obamacare, proving there is a wide gap in understanding the law. (See: https://www.washingtonpost.com/opinions/trump-voters-didnt-take-him-literally-on-obamacare-oops/2016/12/20/46ef3cae-c6f3-11e6-bf4b-2c064d32a4bf_story.html?hpid=hp_no-name_opinion-card-c%3Ahomepage%2Fstory&utm_term=.0decc010c34c )

Patients who voted for change are going to get it in 2017. It just may not be the change they want. And many bioethicists fear some may have unwittingly voted for their own executioner if their healthcare goes away.

On November 9, 2016, as the stock market fell 800 points and the Canadian immigration website crashed, we elected what other countries call a “dangerous” and “unthinkable” President. Here is Germany’s take: http://www.spiegel.de/international/world/spiegel-editorial-trump-is-a-dangerous-president-a-1120925.html.  Canada had this to say: https://www.thestar.com/news/world/uselection/2016/11/09/donald-trump-wins-america-elects-an-unthinkable-president.html.

In the U.S., more than half the population of this country (particularly those who work in the areas of bioethics, health law, healthcare, or human rights ) compared waking up on November 9^th to waking up in a nightmare. Here’s a sample of the editorials from that morning:

http://www.nytimes.com/2016/11/09/opinion/were-near-the-breaking-point.html?action=click&pgtype=Homepage&clickSource=story-heading&module=span-abc-region&region=span-abc-region&WT.nav=span-abc-region

https://www.washingtonpost.com/opinions/a-prayer-for-america/2016/11/08/05fee4d2-a5e8-11e6-8fc0-7be8f848c492_story.html

In terms of national and global impact, the reality of a Trump Presidency is only comparable to 9/11. What some are calling “mourning in America”; “11/9”; “Trumpocalypse” or an “electoral catastrophe”, the United States under a President Trump will be, for many, like watching a car crash in slow motion. Aside from the risk of global and climate disasters at the hands of a President who does not believe in climate change, can still be “baited with a tweet”,  and has declined (as of this writing) his daily intelligence briefings, bioethics in the United States is about to go through a hostile takeover. There are four main categories that will be affected once the transfer of power is complete.

Healthcare access. Repeal of the Affordable Care Act as well as repeal or reform of Medicare and Medicaid are on the agenda. This seems especially likely with the pick of Tom Price for Health and Human Services Secretary. See: http://www.nytimes.com/2016/11/30/opinion/tom-price-a-radical-choice-for-health-secretary.html?action=click&pgtype=Homepage&clickSource=story-heading&module=opinion-c-col-right-region&region=opinion-c-col-right-region&WT.nav=opinion-c-col-right-region&_r=0

and

http://www.nytimes.com/2016/11/28/us/politics/tom-price-secretary-health-and-human-services.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=a-lede-package-region&region=top-news&WT.nav=top-news&_r=0

Reproductive justice. Attempts to defund Planned Parenthood, not cover contraception, and repeal of Roe v. Wade are all on the 2017 menu. Although Trump’s first SCOTUS appointment does not necessarily guarantee revisiting Roe v. Wade, challenges to the law are sure to come. If abortion law returns to the jurisdiction of individual states, there could be access in blue states, but most of the country is currently under Republican rule. So we could be looking at more stories like this:  http://www.nytimes.com/2016/11/29/us/tennessee-woman-accused-of-coat-hanger-abortion-faces-new-charges.html?module=WatchingPorta

Human rights violations. Since the election, white supremacy hate crimes – especially targeting Muslims, Hispanics, African Americans and Jews – have skyrocketed. How will we navigate the intersection of healthcare and human rights? For example, will Muslim healthcare providers feel safe in a post-Trump America? Will Muslim patients? What about the prospect of “sanctuary hospitals”? With a reported “white nationalist” appointed as Chief White House strategist (see: http://www.nytimes.com/2016/11/15/us/politics/donald-trump-presidency.html)  and an Attorney General pick with a documented history of racism (see: http://www.cnn.com/2016/11/17/politics/jeff-sessions-racism-allegations/) things are getting morally uncomfortable. Here is the ACLU’s position on some of these issues: https://www.aclu.org/letter/aclu-letter-president-elect-trump-published-new-york-times

Conflicts of Interest. The President-Elect has a dizzying and multi-layered thicket of conflicts of interest that violate the Emoluments Clause, even if his children run his business instead. How can any healthcare provider be expected to adhere to conflicts of interest policies when POTUS 45 could openly use the Presidency to enrich himself? See:

http://www.nytimes.com/2016/11/26/us/politics/donald-trump-international-business.html?_r=0

http://www.nytimes.com/2016/11/25/opinion/donald-trumps-caldron-of-conflicts.html?action=click&pgtype=Homepage&clickSource=story-heading&module=opinion-c-col-left-region&region=opinion-c-col-left-region&WT.nav=opinion-c-col-left-region&_r=0

http://www.huffingtonpost.com/entry/donald-trump-conflict-of-interest_us_58349547e4b09b6055ff367d?section=us_politics

More veterans. With the pick of Michael Flynn for the NSA, we may see a fresh ground war and a draft. (But — perhaps a decline of obesity in those we draft.) See: http://www.nytimes.com/2016/11/19/opinion/michael-flynn-an-alarming-pick-for-national-security-adviser.html?action=click&pgtype=Homepage&clickSource=story-heading&module=opinion-c-col-left-region&region=opinion-c-col-left-region&WT.nav=opinion-c-col-left-region.

Presidential Capacity. With a President who struggles with impulse control, shows clear signs of narcissistic personality disorder, and questionable competencies to run the country, there may indeed be a need for invoking the 25^th Amendment, section 4. Let’s see what happens in December before I go into this.

One thing is clear: we’ll certainly have a White Christmas in a Trump Administration.

The most dominant ethics story this month is the unfolding public health and pediatric ethics disaster caused by unethical and incompetent actors in Flint, Michigan.

The saga and health consequences of the decision to switch Flint’s water source to the Flint River is nicely outlined in the Time cover story published January 21, 2016: (See http://time.com/4188328/the-poisoning-of-an-american-city/) . If you can’t get past the “pay wall” to “The Poisoning of an American City”, here are other good reviews of the crisis:

http://www.nytimes.com/interactive/2016/01/21/us/flint-lead-water-timeline.html?_r=0

http://www.nytimes.com/2016/01/21/us/flint-michigan-lead-water-crisis.html

http://www.motherjones.com/environment/2016/01/flint-lead-water-crisis-timeline

The consequences of lead poisoning to endocrine development can be explored here, although more research is clearly needed within the pediatric endocrine context: http://www.ncbi.nlm.nih.gov/pubmed/19411819

Flint is an organizational ethics story that became a health disparities story. In this case, shortsighted decisions were motivated by budgets and greed. There was no consideration of potential environmental or health consequences of switching water sources, which is the hallmark of competent decision-making. Such considerations are especially critical when children’s health is at stake, as special protections in public health decision-making need to be in place for our most vulnerable populations.

What makes this a health disparities story is that once the water was switched, the complaints from a poor community were disregarded, as those who became ill from the water were disenfranchised.

This isn’t the first time poor American children have been lead poisoned this century. Researchers were called out in 2001 for exposing poor children to lead in an infamous paint study: (See: http://www.nytimes.com/2001/08/24/health/children/24LEAD.html)

Baltimore has had a particularly shady history of lead exposure in poor communities: http://fivethirtyeight.com/features/baltimores-toxic-legacy-of-lead-paint/

For more on lead poisoning and race, see: http://www.motherjones.com/kevin-drum/2016/01/lead-and-race-flint—and-everywhere-else

Although the Flint water crisis has been compared by others to Hurricane Katrina, this crisis is more comparable to the terrible decisions made in the early 1980s surrounding the public blood supply. In the early days of AIDS, the blood industry decided it was too expensive to screen potential blood donors, which led to the unnecessary spread of HIV/AIDS into the public blood supply, but particularly into the pediatric population. We are still recovering from those decisions. The Executive Summary of the Institute of Medicine Report, HIV and the Blood Supply can be seen here: http://www.ncbi.nlm.nih.gov/books/NBK232406/

Flint echoes many painful health disparities and global health episodes in which members of a disenfranchised community were not heard.

What may be the most instructive about the Flint saga are the moral heroes of the story. (See: http://www.motherjones.com/politics/2016/01/flint-water-crisis-lead-heroes ). Of note is Dr. Mona Hanna-Attisha, who demonstrated moral courage and spoke up on behalf of her vulnerable patients and their families.

Ultimately, this infamous public health disaster we will now always refer to as “Flint” is about sickening business decisions and a failure of accountability.

The biggest bioethics story of the year was the breakthrough in human genome editing using CRISPR-CAS9. As one bioethicist put it, long-term employment is here to stay for all bioethicists in light of these new, truly slippery slope technologies (See: http://ieet.org/index.php/IEET/more/caplan20151210).

While it’s nice to know that bioethicists will have job security, I’m not sure the bioethics community is comfortable about the reason.

Fears of human genome editing were simmering by Spring 2015, after multiple studies published by various research groups around the world surrounding gene editing using the technology CRISPR-CAS9 (See: http://motherboard.vice.com/read/germline-engineering). In response, there was a call for a moratorium on gene editing of human germ lines because there were concerns that the science was ahead of the ethical implications (See: http://www.nature.com/news/don-t-edit-the-human-germ-line-1.17111 and http://www.sciencemag.org/content/348/6230/36.short).

But it was too late; a Chinese team of researchers published in April 2015 that they had performed such an experiment on human embryos. (See: http://link.springer.com/article/10.1007%2Fs13238-015-0153-5 ).

And then the debates raged regarding the ethical implications:

• http://www.nature.com/news/chinese-scientists-genetically-modify-human-embryos-1.17378
• http://www.nytimes.com/2015/04/24/health/chinese-scientists-edit-genes-of-human-embryos-raising-concerns.html?_r=0
• http://www.scientificamerican.com/report/customized-human-genes-new-promises-and-perils/

The year closed with an historic summit on human gene editing held December 1-3, 2015. This summit was comparable  to the 1975 Asilomar conference, in which the scientific community felt that self-regulation about recombinant DNA technology was necessary (See: https://en.wikipedia.org/wiki/Asilomar_Conference_on_Recombinant_DNA).

The International Summit on Human Gene Editing held December 2015 led to moral consensus on three key issues:

1. Refrain from research and applications that use modified human embryos to establish a pregnancy.
2. Caution in development of clinical applications until we know more about safety and efficacy, and the risks of inaccurate editing.
3. Moratorium on ‘germline’ editing — the deletion of a gene prenatally in an effort to erase an inherited disease from an embryo and prevent it from being passed on to future generations.

Here is the position paper:

http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12032015a

See also this summary of the position paper in Nature: http://www.nature.com/news/gene-editing-summit-supports-some-research-in-human-embryos-1.18947

Other summaries of the Summit are here:

• https://www.washingtonpost.com/national/health-science/its-too-early-for-gene-editing-of-human-reproductive-cells-experts-conclude/2015/12/03/d251c39a-99fc-11e5-94f0-9eeaff906ef3_story.html
• http://www.nytimes.com/2015/12/04/science/crispr-cas9-human-genome-editing-moratorium.html?ref=health&_r=0
• http://www.nature.com/news/global-summit-reveals-divergent-views-on-human-gene-editing-1.18971
• http://blogs.plos.org/synbio/2015/12/07/international-summit-on-human-gene-editing/

A good perspective on the Summit authored by one of the organizers is here:

http://www.nature.com/nature/journal/v528/n7580_supp/full/528S6a.html

Although the Summit concluded with a moratorium on germ line editing, reproductive endocrinologists already use PGD to eliminate genetic diseases, which some argue should be the superior method to deal with genetic disease in which there are some normal embryos (See: https://www.ipscell.com/2015/04/crispr-versus-pgd/). I blogged about PGD in July 2015 (see: http://endocrineethicsblog.org/preimplantation-genetic-diagnosis-safe-sex-in-a-gattacan-world/).

Jumping ahead, what are the basic ethical implications of human gene editing? Well, that’s the problem – we just don’t know. Based on the questions raised by PGD, it’s not just about access issues, “super race” or designer babies, but we could be eliminating “defects” from the genome that are, in fact, attributes, or introducing “attributes” that wind up changing the human condition in unfathomable ways.

Some food for thought with your champagne tonight!

On this 14th Anniversary of 9/11, healthcare providers of all disciplines should remember the lessons about death and dying on 9/11, elucidated in my 2013 paper: “The End-of-Life Experiences of 9/11 Civilians: Death and Dying in the World Trade Center.” (See: http://www.ncbi.nlm.nih.gov/pubmed/24416875)

The powerful lesson from those trapped and dying in the World Trade Center 14 years ago this morning was truth-telling. These tragic civilians still had decisions to make, and needed the truth so they could make decisions about where to die and how to die. In the North Tower, civilians who called emergency operators by dialing 9-1-1 were told: “Stay where you are”, which was a high-rise fire script that was completely inappropriate for what was unfolding on impact floors. Trapped civilians — who realized they were at the end of life —  made other decisions: they exercised their right to palliative approaches to an imminent death by breaking windows (when they were told not to) and jumping. Some made the choice to call loved ones and guarantee that their coordinates and circumstances were known. These were short calls, as time was short, with a consistent message: they told a loved one that they were trapped in a fire; they couldn’t get out; and they loved them.  Voicemails later became critical forensic evidence in deaths that were classified as homicides.

In the South Tower, hit second, but first to collapse, civilians had a close-up view to the horrors unfolding in the North Tower, and perceived their lives were threatened in the 16 minutes prior to their own tower being hit. Despite hearing an intercom message that their building “was secure” and to “return to your offices”, many made autonomous choices to self-evacuate and leave the building, saving themselves from being trapped on impact floors. Some made a different choice in those 16 minutes: they made “reassurance calls” to family members with a consistent message that they were in the “other building” (Tower 2), and they were safe.  Some of those calls delayed evacuation, but illustrate that connection and communication was a priority. Those in the South Tower who were trapped also made calls to 9-1-1 operators demanding to know whether firefighters would get to them in time as their environment deteriorated, but they were denied proper end-of-life dialogues. Instead of being asked by a skilled responder: “Is there someone I can call for you?” when callers explained they could no longer breathe, they were asked to spell their names, and even transferred or put on hold. This interfered with critical closure calls many would have made to family members instead of dying on hold with a 9-1-1 operator. Some callers simply called family and died on the phone with their loved ones. Several of these calls are available in the public record: (http://www.nytimes.com/packages/khtml/2006/03/31/nyregion/20060331_TAPES_AUDIOSS.html
and http://www.nytimes.com/2006/04/11/us/11cnd-moussaoui.html?_r= )

The lessons learned about death and dying on this terrible morning on September 11, 2001, are not new: they reinforce what end of life experts have known for over 40 years (See: Kubler-Ross, E., 1969 On Death and Dying. New York: Macmillan). People at the end of life want the truth so they can make choices about how to die and where to die.

In recent years, endocrinologists have found themselves in the position of needing to have end-of-life discussions. Especially those who deal with end-stage renal patients who are not transplant candidates, or patients with devastating diagnoses such as anaplastic thyroid cancer (See http://www.ncbi.nlm.nih.gov/pubmed/23130564). If you can’t tell the truth, reach out to a colleague who is expert in end-of-life dialogues so you can allow patients to make critical decisions. Trapped civilians who were in the towers teach us that even in the most imminent and dire circumstances, we can still make a myriad of end-of life decisions so long as we are told the truth.

Imagine learning that the surgeon who performed the total thyroidectomy on your thyroid cancer patient was being charged with homicide for deliberately euthanizing ICU patients ?

Ten years ago today (September 1, 2005), one ENT surgeon, Anna Pou, found herself in the eye of the storm’s crippling aftermath, and instead of relying on her surgical skills, was thrust into the role of having to make disaster ethics triage decisions for a group of very sick ICU patients – most of whom were ventilator-dependent, who had been stranded in Memorial hospital in the wake of Hurricane Katrina.

Is this part of the training of an ENT surgeon? No. And that proved disastrous for Anna Pou, who had to endure, along with two of her colleagues, charges of homicide consequent to evidence of euthanasia. (She was never indicted, and the charges were eventually dropped.)

Here is the 60 Minutes clip which originally aired 9/24/06 chronicling the ordeal of Dr. Pou and her nurse colleagues: http://www.memorialhospitaltruth.com/VTS_01_1.m4v

In 2013, Sheri Fink’s Five Days at Memorial (See:  http://www.nytimes.com/2013/09/04/books/five-days-at-memorial-by-sheri-fink.html?_r=0), which won the 2013 Pulitzer Prize, chronicled the events that went on at Memorial Hospital during the catastrophic flooding following Hurricane Katrina, in which 19^th Century medicine needed to be practiced at the turn of the 21^st Century.

Many of the same challenges played out again during Hurricane Sandy: (See, for example: http://www.npr.org/sections/health-shots/2014/11/13/363606765/hurricane-sandy-stranded-dialysis-patients-lessons-learned and this: http://www.huffingtonpost.com/2012/10/30/hurricane-sandy-hospitals_n_2044000.html

What these events teach us is that Disaster Ethics has to be taught in medical schools and residency programs. We’re living in a time of climate change, a future of more powerful and frequent hurricanes (See: http://news.nationalgeographic.com/news/2014/03/140331-ipcc-report-global-warming-climate-change-science/), combined with vulnerable infrastructures (see: http://www.cbsnews.com/news/falling-apart-america-neglected-infrastructure/

Every healthcare provider in training or practice today is at risk of being in the eye of a storm as weather will only get worse, and vulnerable populations will only increase. Weather is predicted to get far more severe, and hospitals will need to ride out hurricanes, flooding, tornadoes, blizzards, and ice storms. All of these weather systems can and wreak havoc on aging infrastructures, and knock out power, but the power grid itself is vulnerable even in the absence of extreme weather (see: http://www.weather.com/science/environment/news/climate-change-power-grid-risk-climate-central and http://www.wsj.com/articles/SB10001424052702304020104579433670284061220