Breast Cancer

Boo: Scary New Guidelines for Breast Cancer

October 30, 2015 • By

This year, it’s fitting that Breast Cancer Awareness Month is in October, because just in time for Halloween, diagnosis and treatment of early breast cancer just got scary.

New breast screening guidelines are recommending fewer screenings beginning at age 45 instead of 40, as well as eliminating clinical breast exams (See: http://jama.jamanetwork.com/article.aspx?articleid=2463262 and http://www.huffingtonpost.com/2015/10/19/breast-cancer-screening-guidelines-american-cancer-society_n_8337850.html ).

Meanwhile, there is a growing trend to recommend “doing nothing” for a diagnosis of DCIS when there is no way to predict which early breast cancers will remain indolent, and which will become invasive. (See http://time.com/4057310/breast-cancer-overtreatment/ and http://www.wsj.com/articles/debate-over-early-stage-cancer-to-treat-or-not-to-treat-1445276596 )

These are dramatic shifts that fly in the face of the breast health mantra: “prevention and early detection” as explained to women here: http://preventcancer.org/prevention/preventable-cancers/breast-cancer/breast-cancer-prevention-early-detection/.

Right now, the experts in the breast cancer community sharply disagree about screening guidelines and early breast cancer treatment (See: http://www.nytimes.com/2015/10/29/opinion/why-the-annual-mammogram-matters.html?_r=1).

The Principle of Beneficence in clinical ethics obligates healthcare providers to maximize benefits, while minimizing harms. Early detection and prevention fit these criteria, as there is still a greater balance of benefits than harms in stopping invasive breast cancer before it starts. Meanwhile, leaving biopsy-confirmed breast tumors inside of women, when early treatment is available, could violate the Principle of Non-Maleficence, which, at minimum, obligates healthcare providers not to deny patients a standard treatment when one exists. Those who defend “doing nothing” make the “over treatment” argument, and are concerned about false positives and iatrogenic harms. However, millions of women in countries where early detection and prevention are accessible are alive because of early detection, diagnosis and treatment (See: http://www.nbcnews.com/health/cancer/catching-breast-cancer-early-saves-lives-study-confirms-n439591)

Much Ado About Nothing

Merely watching, or observing the natural history of an untreated disease resembles another study that the public eventually found unethical: The Tuskegee Syphilis Study, in which observation (what is generally meant by “active surveillance” or “watch and wait”) of a known disease was presented as a standard of care to poor African-American patients who were not informed that treatment (when it became available) was an option. (See: http://www.cdc.gov/tuskegee/timeline.htm).

The study led to the formation of codified research ethics guidelines in The Belmont Report, which specifically outlined special protections for vulnerable populations in the Principle of Respect for Persons. (See: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html )

Yep, I went there.

Proponents of observational (“active surveillance”) protocols really hate it when bioethicists yell “Tuskegee” in a crowded clinic. But unfortunately, I need to go there because that’s where this is going when you factor in the widening gap in healthcare disparities, poor access to genetic screening for BRCA1 and 2 mutations (costs range from $500-4000), and the dozens of barriers to informed consent that include low literacy, low numeracy, and non-English speaking patients. Few know about “Tuskegee India” – a U.S. funded cervical cancer study in the late 1990s that repeated Tuskegee’s design flaws. Here, over 250 vulnerable women in unscreened control groups — without proper consent — died from cervical cancer in a study designed to look at whether screening made a difference — when we already knew that it did. See: http://www.al.com/opinion/index.ssf/2015/06/india_cervical_cancer_testing.html

If you’re going to change breast cancer screening guidelines, it must be balanced with improved access. Since so many vulnerable populations do not have access to women’s healthcare, it’s ethically problematic to change guidelines to avoid over-diagnosis and over-treatment when so much under-treatment exists. At least 15 million U.S. women have no healthcare access at all (not including undocumented women), while breast cancer continues to affect African American women disproportionately due to both initial access and follow up. See:

The ACS Guidelines even admit: In the United States, barriers to access continue to exist among low-income or uninsured women, those without a usual source of care, or those residing in rural counties.

Telling women to skip their screenings (which include some 5-10% of women in the general population who do not know they are BRCA1 or 2 carriers) is ethically problematic. Telling women with biopsy-confirmed breast tumors that observation is a “reasonable treatment alternative”, when there is not enough evidence to conclude that, is also ethically problematic unless women are told what the risk of doing nothing entails. In our unequal healthcare system, where coverage is not uniform, informed consent my be insufficient, and many are lost to follow-up, these new guidelines are…well… just scary.

 

Reproductive Endocrinology

Planned Attack on Women’s Reproductive Healthcare

September 30, 2015 • By

Yesterday, Cecile Richards, president of the Planned Parenthood Federation, testified before Congress regarding the now-infamous doctored videos manufactured by anti-choice activists. (See: http://www.nytimes.com/2015/08/28/us/abortion-planned-parenthood-videos.html  and http://www.c-span.org/video/?c4552968/cummings-planned-parenthood-hearing.)

You can watch the entire testimony here: http://www.c-span.org/video/?328410-1/planned-parenthood-president-cecile-richards-testimony-taxpayer-funding.

Despite the facts, Republican members of the House Oversight and Government Reform Committee continued their line of questioning as if the videos were factual. Their questioning also revealed such alarming ignorance of women’s healthcare, and the organizational structure and funding of Planned Parenthood, that one wonders whether they truly demonstrated an adequate level of decision-making capacity — a basic standard we demand from patients for informed decisions, which requires Understanding, Appreciation and Rationality. Most of the questions asked of Ms. Richards did not meet this standard, including one member asking her if she believed in “selling baby parts”— phrasing that demonstrates stunning levels of medical illiteracy and ignorance of the laws surrounding fetal tissue research (see: http://www.hhs.gov/ohrp/policy/publiclaw103-43.htm.html).

The Chairman of the committee belligerently presented an inaccurate slide from a pro-life organization, claiming it came from Planned Parenthood (see: http://www.c-span.org/video/?c4552966/rep-chaffetz-caught-lie). When Ms. Richards politely noted the source of the slide was from “Americans United for Life,” an anti-choice lobby, and assured the Chairman it was not accurate, he yielded the floor.

Any provider of women’s healthcare should be alarmed that funding for critical reproductive healthcare services are being debated by Congressional representatives who don’t seem to meet the same standards of decision-making capacity we would demand of patients or their surrogates. They do not understand or appreciate the facts of how Planned Parenthood is funded; what fetal tissue research is; or even, at minimum, that the videos in question are not authentic.  Further, they do not demonstrate rationality — an ability to reason with the information provided to them by Planned Parenthood.

The only thing that was clear about this “hearing” was that the Republicans were unable to listen.

 

Uncategorized

Lessons About Death and Dying on 9/11

September 11, 2015 • By

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.

Uncategorized

The Aftermath of Hurricane Katrina: A Disaster for an ENT Surgeon

September 1, 2015 • By

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 19th Century medicine needed to be practiced at the turn of the 21st 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

 

Diabetes

Lessons from Hurricane Katrina: Diabetes in the Population Below See-Level

August 29, 2015 • By

Today marks the 10th Anniversary of Hurricane Katrina, which revealed alarming data from an “accidental” 2005 diabetes care study funded by “Mother Nature” in a state that ranked at the time 48th in levels of health insurance, 45th in public health, and 50th in overall health (See: http://www.ncbi.nlm.nih.gov/pubmed/16239669).

This event revealed clear health disparities to the average television viewer. The incidence and co-morbidity of diabetes and/or diabetes complications in the population that stayed behind — the lower income and largely African-American community — overwhelmed the ability of public health agencies to respond in this national emergency (See also: http://www.ncbi.nlm.nih.gov/pubmed/16373918 and http://www.ncbi.nlm.nih.gov/pubmed/16221772 )

Diabetes complications interfered with evacuation, rescue for those who survived, and appropriate resources for evacuees with limited supplies. Some authors liken Katrina to the infamous distributive justice tale of the Titanic, in that there were clearly “not enough lifeboats” for diabetes patients in “steerage class”.

Hurricane Katrina put the health effects of poverty and race in plain view, although the health disparities in the incidence and management of Type 2 diabetes had long been documented at the time of the storm (See: http://www.ncbi.nlm.nih.gov/pubmed/15983347):

  • African-Americans are twice as likely as Caucasians to have diabetes.
  • African-Americans suffer greater diabetes-related complications.
  • Uninsured diabetes patients in 2005 had a 25% greater risk of premature death.
  • The percentage of uninsured African-Americans in 2005 was 73% greater than in the Caucasian community.
  • African-American diabetes patients in 2005 were less likely to have their A1C measured.
  • Usual care for African-American diabetes patients in 2005 failed to meet published diabetes care guidelines.

Hurricane Katrina taught us that chronic disease management is a critical public health need in a disaster — on par with infection control. Stockpiling supplies for diabetes care should now be part of Disaster Planning.

In 2012, diabetes patients with end-stage renal disease caught in Hurricane Sandy were at risk again. (See: http://www.nj.com/healthfit/index.ssf/2015/08/hurricane_sandy_diabetics.html).

How many hurricanes does it take to get disaster diabetes care planning right? We’re not there yet, but we do know that diabetes and poverty always spell disaster for stranded vulnerable populations.

Hypothyroidism

Why Hillary Clinton’s Thyroid Needs Healthcare Reform

August 7, 2015 • By

As a bioethicist, I’m disturbed that the person highly likely to be the next President of the United States is receiving substandard treatment for hypothyroidism. Hillary Clinton’s health records were just released to the public, which was not a HIPAA violation but standard protocol for Presidential candidates as health and fitness for office are released to the voting public.

Unfortunately, it was revealed that Hillary Clinton is not being properly treated for hypothyroidism. Instead of being prescribed the standard of care — levothyroxine sodium — she is being prescribed desiccated thyroid hormone — which is an antiquated and less stable form of thyroid hormone replacement, as any board-certified endocrinologist or physician with demonstrable training knows. Here’s the report from the Daily Mail that makes public her doctor’s report:

http://www.dailymail.co.uk/news/article-3181683/Hillary-Clinton-s-doctor-gives-clean-bill-health-2012-concussion-says-s-blood-thinners-clot-sinuses-takes-thyroid-pills-day.html)

Levothyroxine sodium has been the standard of care for many years, so it is not easily explained why Ms. Clinton’s internal medicine physician would not follow the standard of care. The most recent clinical practice guidelines from both the American Association of Clinical Endocrinologists (AACE) and the American Thyroid Association (ATA), strongly recommend against the use of desiccated thyroid hormone. See Recommendations 22.1 and 22.4 in the joint ATA/AACE “Clinical Practice Guidelines for Hypothyroidism” (https://www.aace.com/files/final-file-hypo-guidelines.pdf) and Recommendations 1a and 12 in the ATA “Guidelines for the treatment of hypothyroidism” (http://online.liebertpub.com/doi/full/10.1089/thy.2014.0028 )

The site, “Quackwatch”, managed by Dr. Steven Barrett, even has a warning about physicians who prescribe desiccated thyroid hormone: http://www.quackwatch.org/01QuackeryRelatedTopics/armour.html

There are only two reasons why a physician would prescribe desiccated thyroid hormone to a hypothyroid patient in the year 2015 (as opposed to the year 1915):

  1. The physician is not aware of the standard of care, and offered it as an option. Although it’s true that physicians with no special training or board certification in endocrinology manage many hypothyroid patients, clinical practice guidelines put out by specialty organizations exist for the purpose of educating and updating these colleagues about the acceptable and recommended standards of care. Internal medicine practitioners, such as Ms. Clinton’s physician, have a legal and ethical duty to stay up to date and proficient in standards of care for multiple common conditions. Since hypothyroidism is one of the most common conditions seen by internal medicine practitioners, prescribing a medication that is below the standard of care – particularly to the former Secretary of State and potentially future POTUS, is ethically concerning. If Ms. Clinton was offered desiccated thyroid hormone as an equal alternative to levothyroxine – either by her internist or a different physician — then she was unable to provide informed consent.
  2. The patient has declined the standard of care. Many hypothyroid patients search the Internet or popular health books about treatments. Unfortunately, purveyors of misleading information that desiccated thyroid hormone is “natural” and therefore better for you, is a common false message patients will find. Many physicians spend considerable effort to educate (or de-program) hypothyroid patients that desiccated thyroid hormone is below the standard of care, but some patients insist on it against medical advice. Or, a patient may refuse to switch to the standard of care if desiccated thyroid hormone was prescribed by a different physician. In these cases, it is ethically permissible to prescribe (or renew) desiccated thyroid hormone because it is, at least, better than nothing. Not providing thyroid hormone replacement would lead to severe hypothyroidism, which could mean loss of decision-making capacity in the short term, and myxedema coma in the long term.

This situation leads to wider, unintended consequences for thousands of hypothyroid patients, which I call the “Oprah Problem”. Oprah Winfrey’s 2007 diagnosis of what was probably Hashimoto’s thyroiditis led to her promoting non-standard therapies on her show, endorsed by factitious experts with no training in thyroidology (See: http://www.newsweek.com/why-health-advice-oprah-could-make-you-sick-80201). Patients assume that women with the power and stature of Oprah Winfrey or Hillary Clinton must be receiving the very best care in the United States and may request the same non-standard therapies. This results in pointless harm. Unfortunately fame is often a barrier to good care for reasons having to do with “VIP Syndrome” – when physicians become star-struck, and are reluctant to refer their famous patients to more experienced physicians.

Considering Hillary Clinton’s long dedication to American healthcare, she deserves, at least, the prevailing standard of care, not a level of care that is so far below the community standard.

Diabetes

Hey, Hey, LBJ: How many Seniors did you Save Today?

July 31, 2015 • By

If you’re an endocrinologist who takes care of seniors with diabetes, you should say “Thank You!” to Lyndon B. Johnson.

Yesterday marked the 50th anniversary of Medicare (see: https://www.medicare.gov/anniversary/index.html). And while the politics and questions about this program continue (see: http://www.huffingtonpost.com/entry/medicare-was-born-50-years-ago-today-and-its-still-under-attack_55b93d85e4b095423d0db7f9?), it marked a healthcare ethics milestone in the United States.

Medicare has had an especially profound impact on ethical care for people with diabetes, and end-stage-renal disease (see: https://www.annanurse.org/download/reference/health/esrdReimbursementFactSheet.pdf)

But Oh — The Times They Are A-Changin’…

When Medicare was signed into law on July 30, 1965, just 1.2% of the population had diabetes, which translated then into 2.39 million Americans. In 2014, the CDC reported that 29.1 million Americans (9.3% of the population) have diabetes, but of those, 8.1 million remain undiagnosed (see: http://www.cdc.gov/diabetes/data/statistics/2014statisticsreport.html). You can view the growth in diabetes prevalence from 1958-2013 here: http://www.cdc.gov/diabetes/statistics/slides/long_term_trends.pdf

The sharp increase in diabetes was likely never foreseen, but we now know how much this is tied to obesity and our toxic diet, particularly the aggressive marketing of sugary drinks. (http://endocrineethicsblog.org/mad-men-finale-and-type-2-diabetes-what-happened-when-we-bought-the-world-a-coke/)

Countless people with diabetes may not be diagnosed until they have access to primary care and health coverage, which is why last month’s SCOTUS ruling on the Affordable Care Act is so important. (http://endocrineethicsblog.org/bench-to-bedside-how-the-supreme-court-decisions-this-week-affect-endocrinologists/)

It was also reported yesterday that only 1 in 3 seniors are actually well controlled http://consumer.healthday.com/diabetes-information-10/demographic-diabetes-news-177/seniors-diabetes-control-diabetes-care-jhbsph-release-batch-1857-701577.html), and some of these reasons may have to do with continuing health disparities.

One thing is certain: LBJ did the right thing 50 years ago. And your patients are still benefiting.

Reproductive Endocrinology

Preimplantation Genetic Diagnosis: Safe Sex in a Gattacan World

July 24, 2015 • By

Earlier this month, 60 Minutes re-broadcast a segment called “Breeding out Disease” which discussed the ethical implications of preimplantation genetic diagnosis (PGD), a technique already in use for several adult onset diseases. You can watch the segment here: http://www.cbsnews.com/news/breeding-out-disease/

This aired a day after Independence Day, perhaps to imply the ultimate in reproductive freedoms and procreative liberty. The ASRM Ethics Committee endorses the use of PGD for adult onset disorders in its 2013 Opinion under certain conditions, which most bioethicists would agree with (see: “Use of PGD for Serious Adult Onset Conditions” here: https://www.asrm.org/EthicsReports/).

But the recommendation by the experts interviewed for the 60 Minutes segment goes farther: that natural breeding should be discouraged in favor of using PGD to breed out known genetic diseases. Lee Silver, Co-Founder and Chief Science Officer of GenePeeks, stated: “ I see a future in which people will not use sex to reproduce. That’s a very dangerous thing to do.” This certainly puts a new spin on the term “safe sex”.

For years, I’ve been teaching the 1997 film, Gattaca (http://www.imdb.com/video/imdb/vi3722551321) as a springboard to discuss the unintended ethical, legal and social implications of “breeding out” natural breeding. In 1997, Gattaca spoke to cultural anxieties about the new reproductive technologies that were defining reproduction for millions, particularly in the areas of sex selection. The film was released before the complete mapping of the Human Genome. Here is the original 1997 New York Times review on the film’s release: http://www.nytimes.com/movie/review?res=990DE4DD103EF937A15753C1A961958260

The slippery slope is that PGD could become eugenics “on steroids” once breeding out “undesirable traits” is on the menu. Endocrinologists are already familiar with parents who insist on medically inappropriate growth hormone so their children can be taller. What happens when we can identify specific genes on the autism spectrum? Would we be breeding out future Newtons, Einsteins, or Edisons — all reported to have had Asperger’s?

We already have a society in which the poor die of preventable diseases (note how many cases of renal failure are related to untreated and undiagnosed Type 2 diabetes). Imagine how the gap could widen where half the world selectively breeds using PGD and the other half throws the genetic dice through natural breeding (often unintended). That dystopian world may be closer than we think.

It’s certainly easy to see the benefits of preventing a harmed life; some bioethicists have argued that in select cases, it may even be “unethical” to have a baby if you’re knowingly passing on a terrible disease. In the endocrine world, PGD can have vast implications, including breeding out identified RET mutations in MEN 2 families (See Recommendation 12 in the 2015 MTC guidelines: http://online.liebertpub.com/doi/abs/10.1089/thy.2014.0335).

The President’s Commission on Bioethics provided an opinion on PGD in 2004:

https://bioethicsarchive.georgetown.edu/pcbe/reports/reproductionandresponsibility/chapter3.html

This  opinion stands the test of time: “Biology is not destiny…The ability to affect the genetic make-up of the next generation may also exacerbate the tendency to assign too much importance to genetic make-up, and so may promote an excessively reductionist view of human life. These new practices may lend undue credence to the notion that human characteristics and conditions are simply or predominantly genetically determined—a too-narrow understanding of human freedom, agency, and experience, and a simplistic understanding of human biology.”

Uncategorized

Bench to Bedside: How the Supreme Court Decisions this Week Affect Endocrinologists

June 28, 2015 • By

June 25 and 26, 2015 stand as Morality Markers for the United States. How does the ruling on the Affordable Care Act (King v. Burwell) http://www.nytimes.com/2015/06/26/us/obamacare-supreme-court.html and marriage equality (Obergefell v. Hodges) http://www.nytimes.com/2015/06/27/us/supreme-court-same-sex-marriage.html affect ethical issues in everyday endocrinology?

The ACA Ruling:

This ruling was about healthcare access for millions of American patients. The question was whether patients who purchased health insurance through the federal exchanges — in states refusing to set up their own exchanges—could keep their subsidies. Several states refused to set up their own exchanges due to partisan politics. But keeping federal subsidies is what made this care accessible for patients. After the ACA passed, endocrinologists were starting to see the impact on the uninsured. For the first time, they were seeing new patients with prolonged and severe endocrine diseases that had gone undiagnosed and untreated. Patients first presenting with severe diabetes and hypothyroidism were finally getting access to care; patients with aggressive thyroid cancers were able to get surgery and post-surgical treatment. Had the Supreme Court ruled in favor of the plaintiff, the payment structure that enabled truly affordable health insurance premiums, would have gone away, affecting care for untold thousands of endocrine patients in dramatic ways.

Now that major challenges to the ACA are over, we still need to work on improving the law: http://www.nbcnews.com/health/health-care/bioethicist-obamacare-here-stay-now-lets-fix-it-n382591.

Nor is the law immune from sabotage: http://www.nytimes.com/2015/06/28/opinion/sunday/the-fight-for-health-care-isnt-over.html?ref=opinion&_r=0

Marriage Equality:

Surrogate decision-making is governed by state law, and many states follow the family hierarchy surrogacy laws, in which surrogate decisions are automatically designated to family members on a hierarchy unless otherwise stated in Advance Directives. The first family member on the hierarchy is typically the legal spouse. However, in states that had banned, or did not recognize same sex marriage, same sex spouses needed to specifically designate one another in Advance Directives, which was a burden heterosexual couples did not need to assume. While endocrinologists are not typically engaged in critical care, many endocrine patients require surrogate decision-makers, particularly when hospitalized. Here are some common examples:

  • Poorly controlled diabetes patients
  • Thyroid cancer patients requiring surgical management
  • Impaired hypothyroid patients (See: http://www.ncbi.nlm.nih.gov/pubmed/18177258

Finally, gay  patients who are married no longer have to worry that their spouses will be passed over as a surrogate decision-maker when they do not have full capacity.

Menopause

Ethics of Authorship: What’s So New About the Upcoming Clinical Practice Guidelines for Menopause : They’re Written by Women

June 14, 2015 • By

When I attended the 2015 Endocrine Society meeting in San Diego, I was struck by the sessions about the upcoming clinical practice guideline on menopause (Treatment of Symptoms of the Menopause): they were authored by women. Here’s an interview with Cynthia Stuenkel, MD, Chair of the Menopause Clinical Practice Guidelines Taskforce for the Endocrine Society: https://www.youtube.com/watch?v=zqDxGy41Uc8

Ethically, does gender really matter when it comes to producing evidence-based practice guidelines on menopause? Yes. It does when it’s about menopause.

When considering beneficent therapies for peri and post-menopausal women, it’s still difficult for male practitioners to understand and appreciate subtle and nuanced qualitative differences in menopause symptoms. The most caring and sensitive male practitioner has still never experienced an ordinary period and cramps, flooding, hot flashes, and bloating. And for many women reaching their career peaks in peri- and post-menopause, it’s difficult for males to imagine these symptoms while chairing a meeting or making a major presentation. Several professional women in this phase of life pack plenty of red clothing (pant suits, dresses, or skirts) when traveling because of the unpredictable nature of their menses.

From a medical sociological perspective, women bond over their uterine experiences. Transgendered females (who transitioned from males) have noted the differences in intimacy between female and male friendships, for example: women talk about their bodies. Women who don’t know each other may immediately share information about the state of their uterine health in a public bathroom or private boardroom.

Clinical practice guidelines authored by female experts in menopause hormone therapy may help to ensure that patients’ reported symptoms help to guide goals of treatment. At the same time, patients may begin to place trust in evidence-based guidelines for hormone therapy when they can no longer just brush them off as a “male-dominated industry”.