The First Cut is the Deepest

Last week, President Trump publicly unveiled his 2018 budget proposal. If left unchanged, that financial blueprint would increase US federal defense spending by more than $50 billion, while also appropriating billions more to bolster immigration enforcement and build a 2,000 mile-long wall along the US border with Mexico. A self-proclaimed deficit hawk, the President would offset those increased expenditures will sharp cuts to the US Departments of State, Energy, Health and Human Services, and the US Environmental Protection Agency.

In sharp contrast to campaign trail promises to boost the economy, create jobs, and protect Americans at home and abroad, however, Trump’s 2018 budget is likely to do the exact opposite. Consider, for example, the proposal to cut nearly $6 billion from the US National Institutes of Health (NIH).

Made up of 27 different institutions and centers, the NIH is the largest supporter of biomedical research in the world. Through the NIH or other funding agencies, the federal government supports almost half of all the biomedical research in the US. Private businesses support another quarter, and the remainder of biomedical research support comes from state governments and nonprofit organizations.

With an annual operating budget of $30 billion, the NIH provides training and support to thousands of scientists at its main campus in Bethesda, Maryland. Moreover, through a system of extramural grants and cooperative agreements, the NIH provides financial support for research-related programs to over 2,600 institutions around the country, creating more than 300,000 full- and part-time jobs.

Given this, the cuts proposed in the 2018 budget are devastating. Coupled with inflation and the costs of supporting current activities and the activities of the Agency for Healthcare Research and Quality – a $350 million agency whose activities the NIH is expected to absorb this year – a $6 billion reduction would essentially eliminate all new extramural funding programs for 2018. The impact on American science and research, not to mention the US economy, is catastrophic.

The money that the NIH provides to academic institutions through extramural funding and collaborative partnerships does more than pay the salaries of the nation’s top scientists. In order to support studies designed to develop new treatments for diseases like cancer, Alzheimer’s, Parkinson’s, and HIV/AIDS, these researchers also spend billions of dollars to purchase equipment, services, and supplies for local companies. In one analysis that looked at nine Midwestern institutions that receive about $7 billion annually from the NIH, the National Science Foundation, and other funding agencies, economists found that those universities, in turn, spent over $1 billion yearly buying goods and services from various US vendors and subcontractors.

Finally, the NIH is a net generator of jobs and income for the US. The basic research that the NIH and similar federal funding agencies support through extramural grants is used by private biotechnology, chemical, computer, electronic, nanotechnology, pharmaceutical companies, among others, to develop the new technologies and create the new products that have made the US a global leader in science and engineering. In fact, one economic study found that for every $1 spent on NIH-supported projects, there is an estimated return of nearly $2.20 to the US economy.

Admittedly, as a public health researcher, I am a little biased in this regard. For much of my career, my research has been supported in part or in full by federal grants. I also currently direct two federally funded research ethics training programs that face an uncertain future. Those projects are supported by multi-million dollar grants from the Fogarty International Center, the smallest of the NIH’s 27 component parts.

Operating with a minuscule $70 million annual budget, less than half of what the US taxpayer will spend this year on travel and security for Trump’s weekend golf outings at Mar Largo, Fogarty supports a number of collaborative training programs and research partnerships between US and international institutions. Trump plans to eliminate the Fogarty International Center entirely, most likely because the international focus of the Center’s projects – and the fact that US tax dollars are being spent overseas – has drawn the ire of nationalists in his administration.

But this ire is misplaced. Fogarty’s programs and research partnerships are designed to combat global health threats like Ebola, HIV/AIDS, malaria, and Zika virus, the very diseases that increasingly threaten American shores. Ending five decades of US leadership in the area of global health at a time when our nation faces an increasing number of new and remerging disease threats is thus horribly shortsighted. The border wall might prevent undocumented workers from slipping into Texas, but it won’t prevent a Zika-infected mosquito from crossing the Rio Grande.

Hopefully, our leaders in Congress are not so myopic as those in the Trump Administration. Even though our leaders in Washington have often seemed to ignore science when it suited them – denying the existence of anthropogenic climate change or funding abstinence-only sex education – the NIH has often had bipartisan support. Slashing the budget of that organization will not only result in a net loss of jobs, it will set back scientific research for decades, threaten the nation’s status as the world leader in science and technology, and put us all at risk should there be an outbreak of infectious disease somewhere in the world. It is hard to see how that meets anyone’s definition of “making America great again”!

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 23, 2017, and is available on the WAMC website.]

Posted in Policy, Politics, Research | Leave a comment

The Problem with Binary

Throughout his raucous 2016 campaign, President Trump repeatedly claimed that he would be an ardent defender of the lesbian, gay, bisexual and transgender (LGBT) community. During the Republican National Convention, for instance, he proclaimed that “as your president I will do everything in my power to protect LGBTQ citizens.” Despite this statement (which stood in stark contrast to the Republican Party’s virulently anti-LGBT political platform), and diverging from the public comments and actions when he was still a private citizen, since gaining the nomination and later the presidency, Donald Trump has largely kowtowed to the more homophobic wings of his party.

Although he has yet to repeal an Obama-era order protecting LGBT federal employees from workplace discrimination, for example, he has repeatedly expressed support for the First Amendment Defense Act. Modeled on the anti-LGBT legislation passed in Indiana when Vice-President Pence was governor of the Hoosier State, that Act would allow individuals, businesses, and healthcare providers to deny services to LGBT individuals based on their religious beliefs.

More recently, in spite of prior comments that “people should use the bathroom that they feel is appropriate,” Trump rescinded existing protections for transgender students. Previously, the federal government had issued guidelines that, while not legally binding, required public schools to allow transgender students to use bathrooms that corresponded with their gender identity rather than biological sex. Under the Obama administration, the Departments of Justice and Education had taken the position that existing regulations like Title IX, the federal law that prohibits sex discrimination in schools, also applied to discrimination based on gender identity. That is no longer the case.

By taking these positions publicly, the Trump administration has emboldened anti-LGBT advocates and led conservative lawmakers to push for increasingly restrictive regulations. Just this week, prompted by the federal government’s reversal on transgender rights, the Supreme Court announced that it would not hear the case of Gavin Grimm, a transgender boy from Virginia who is banned from using the men’s room at his local high school. That case has been sent back to the lower courts, which had previously ruled in Mr. Grimm’s favor. Legislators in that state have also introduced a bill that would block transgender people from using the public restrooms of their choice.

Conservative lawmakers in other states have also followed suit, drafting legislation similar to North Carolina’s controversial HB2 bill. That law not only invalidated local ordinances designed to protect LGBT individuals from discriminatio but also required individuals to use restrooms and changing facilities that correspond to the sex on their birth certificates rather than their gender identity. All told, these so-called “bathroom bills” have been introduced in 14 states since the start of the 2017 legislative session, including Illinois, Kentucky, Minnesota, New York, Tennessee, Texas, Virginia, and Washington. Proponents of these bills argue that they are about public safety; these bills are needed to prevent sexual predators from gaining access to women’s bathrooms and locker rooms. This claim, however, is not supported current crime statistics.

Not all of these bills will pass but many are likely to, particularly in more conservative states like Kentucky, Tennessee, and Texas. Consider the pending Texas law: Senate Bill 6. That law, which got its first legislative hearing yesterday, would require school districts and other state entities to limit access to public restrooms and changing facilities based on an individual’s “biological sex.” Biological sex, as defined in the statute, is the condition of being male or female as stated on a person’s birth certificate.

Now consider the controversy surrounding one of Texas’ high school wrestling stars: Mack Beggs. Last week, Mr. Beggs won the state championship in the 110-pound class. But he did so in the girls’ competition, handily beating Chelsea Sanchez for the win. Mack is transgender and identifies as male. Although Mr. Beggs would prefer to wrestle the other boys in the state, he is not allowed to because existing rules in Texas require that an athlete compete according to their birth sex rather than gender identity.

Moreover, for the past two years, Mack has been taking testosterone as part of his hormone therapy, giving him a more ‘male’ pattern of physical development. This includes greater muscle mass compared to women of a similar age, raising questions whether or not he had an unfair advantage over his female opponents. It also raises a real concern about safety, rather than the red herring argument used by bathroom bill supporters.

Controversies like these highlight the problem with these so-called bathroom bills. By trying to force people to meet a binary definition of sex, rather than recognizing the fluidity of gender identity, we end up creating more problems than we solve. If anything, these bathroom bills and other anti-transgender policies are little more than bigoted answers to questions that don’t exist.

As the visibility of this community increases – through the public activism of celebrities like Laverne Cox and the private courage of kids like Mack Beggs – our society is going to have to address the issue of transgender rights head-on. Cautious estimates put the number of transgendered Americans upwards of 1.4 million individuals. That’s a large number of people, and they are our coworkers, neighbors, friends, and relatives. They deserve respect and recognition of their humanity, despite what opportunistic politicians like Trump and Pence might think.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 9, 2017, and is available on the WAMC website.]

Posted in disadvantaged, Discrimination, Homosexuality, Human RIghts, Policy, Politics, Uncategorized | Leave a comment

Drop the Kleenex and Put Your Hands Up!

For the past week, mainstream, alternative, and social media outlets here in the United States and abroad have been consumed with discussion and debate about the legality and morality of President Trump’s recent travel ban. However, the so-called Muslim travel ban is not the only set of potentially controversial restrictions put into place recently.

Unbeknownst to most, the federal government is also planning to expand greatly the power of the US Centers for Disease Control and Prevention (CDC) to detain people who are suspected of carrying a dangerous communicable illness. Also known as quarantine – a term that comes from the Italian word for forty, in honor of the practice in Early Renaissance Venice to make trading vessels remain anchored offshore for 40 days before entering the port – the detention, isolation and even forcible treatment of those potentially exposed to a infectious disease like tuberculosis or Ebola is one of the most powerful and one of the most contentious tools in the public health arsenal.

The authority of local, state, and federal officials to do this comes from the parens patriae powers of the state. Latin for “parent of the nation,” parens patriae refers to the legal doctrine that the government has a responsibility to protect those who cannot care for themselves. This includes, for example, the power of the state to intervene against an abusive or negligent parent. More broadly, it also encompasses the government’s responsibility to protect the health and welfare of the general population, which is accomplished through public health policies and practices like food safety inspections, fluoridation and chlorination of municipal water supplies, immunization programs and requirements, and the use of isolation and quarantine to prevent the spread of disease.

The decision to quarantine a person is not something to be taken lightly. Doing so places restrictions on an individual’s civil rights, including their right of movement and their right of assembly. They may also experience significant economic, psychological, social, and even physical injuries as a result of being quarantined.

Thus, quarantine can be justified only if it is absolutely necessary to protect others. To put it another way, the forcible detention of someone believed to be infected with a dangerous infectious disease is ethically and legally defensible only if it meets the standards of the harm principle, as originally articulated by philosopher John Stuart Mill. In his classic work On Liberty, Mill argued that “the only purpose for which power can be rightfully exercised over any member of a civilized community against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant.”

Most public health ethicists and lawyers argue that the use of quarantine must not only meet the harm principle, but it must also be proportional to the danger faced and be transparent in its application. For example, you wouldn’t quarantine someone with a disease that cannot be spread from person to person. Similarly, quarantine might be made voluntary rather than compulsory. It is also expected that public health authorities clearly communicate the reason for the quarantine order and allow for a process of appeal.

This is why the expanded powers of the CDC, should they be enacted, raise considerable concern.

Currently, the CDC is limited to detaining those who are entering the country or crossing state lines unless they get approval from local and state officials. The agency is also limited to quarantining people exposed to a handful of deadly and highly infectious diseases, such as cholera, tuberculosis, and plague.

Under the new regulations, however, CDC officials will be able to detain anyone in the country who is exhibiting signs that they are infected with a potentially dangerous disease, such as a high fever, headache, or cramps. Of course, these symptoms are pretty indiscriminate; a person with a fever of 104°F may be infected with Ebola or they may just have a bad case of the flu. The proposed rules will also allow the CDC to detain someone for up to 72 hours before their case is subject to medical and legal review. That review will be conducted by CDC officials themselves, raising concerns about transparency, objectivity, and due process.

It should thus come as no surprise that many public health practitioners and health policy experts are concerned about these newly proposed quarantine regulations. Not only are they worried about the lack of legal safeguards and the potential for abuse by overly zealous officials, most believe that the expansion of the CDC’s quarantine powers may actually elevate the threat of epidemic disease. People who are experiencing clinical signs of a dangerous illness, for example, may choose to hide their symptoms from public health authorities rather than run the risk of being detained.

Quarantine is a very potent weapon in the fight against infectious disease, but the decision to deploy this “nuclear option” should be done carefully and judiciously. Individual civil liberties must be protected even during a public health crisis. But as we saw during the 2014 Ebola outbreak, when public figures like Donald Trump and Chris Christie called for a blanket quarantine of those returning from West Africa despite the lack of an evidence-based reason to do so, government officials are far too quick to pull this trigger.

Giving the CDC greater authority and power to detain people on public health grounds will do little to prevent new outbreaks of infectious disease in the US, but it will further chip away at our already eroded civil liberties and rights.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on February 9, 2017, and is available on the WAMC website.]

Posted in Human RIghts, Policy, Public Health | 1 Comment

A Public Cervix Announcement

On Monday, just days after millions of women (and their allies) marched in political demonstrations, researchers reported a disturbing new finding that could affect the health and wellbeing of these protestors. In a study published in this month’s issue of the journal Cancer, scientists found that a woman’s risk of dying from cervical cancer was much higher than originally suspected.

Cervical cancer is the fourth most common cancer in women worldwide. It also has the fourth highest mortality rate. Approximately 13,000 cases of invasive cervical cancer are diagnosed annually among American women. The number of women diagnosed with cervical cancer has decreased significantly over the past 40 years, largely due to the widespread use of the Pap test (or smear) to screen for the presence of precancerous lesions on the cervix, but over 4,000 women still succumb to the disease every year.

Previously, health experts had used those numbers to estimate that cervical cancer killed approximately 5.7 of 100,000 black women and 3.2 of 100,000 white women in the US. That racial disparity in death rates is pretty stark, particularly when you consider rates of cervical cancer incidence and mortality among other racial and ethnic groups. For example, Latinas have even higher incidence rates than black women — Hispanic women in the US are more likely to be diagnosed with cervical cancer — but in recent years the death rate in this group has fallen to the point where it is similar to that of white women.

What is particularly disturbing is we now know that those death rates are wrong and that the racial disparity is much worse than we assumed. Previous estimates of cervical cancer mortality failed to account for women who had undergone a hysterectomy to treat other conditions like endometriosis, fibroids, pelvic inflammatory disease, or ovarian and uterine cancer; almost one-third of American women will undergo a hysterectomy by the time they are 60. Because a hysterectomy almost always involves the removal of the cervix, which eliminates a woman’s cervical cancer risk, failing to exclude these individuals leads to a significant underestimate of the true rate of cervical cancer death.

When researchers adjusted these estimates to exclude women who had had hysterectomies, the results were startling. In fact, the actual cervical cancer death rate is 4.7 per 100,000 white women and 10.1 per 100,000 black women. Those are rates that are 47% and 77% higher than previously calculated. Moreover, despite the fact that Hispanic women were not included in this study, the racial disparity in cervical cancer death rates is much wider than originally thought. Black women in the US are dying of cervical cancer at the same rate as women living in less developed countries in Africa, Asia, and Latin America.

This is particularly troubling for a number of reasons, most notably because cervical cancer is largely preventable.

First, almost all cases of cervical cancer are caused by the human papillomavirus (HPV). HPV is a sexually transmitted disease believed to infect nearly 80% of the adult population. Luckily, there are now vaccines on the market that protect against the types of HPV that cause 70% of cervical cancers in women. Studies suggest that these vaccines, if given before a woman becomes sexually active, are likely to be highly effective in preventing cervical cancer. Widespread vaccination of adolescents against HPV would largely eliminate this deadly disease.

Second, for those already infected with HPV, regular Pap smears (or more modern and less invasive tests) can be used to identify precancerous cervical lesions early. The potentially cancerous cells can then be excised, frozen or destroyed by using a laser. Without treatment, these precancerous lesions will progress to invasive cancer in about 30 to 50% of cases. With treatment, less than 1% of them do.

So, the fact that so many women still die of cervical cancer, and the fact that black women die at significantly higher rates than white women, raises serious questions about their access to the HPV vaccine and to cervical cancer screening and treatment programs. For example, only 40% of American girls aged 13 to 17 have been fully vaccinated against HPV, and geographic, socioeconomic and racial disparities persist. Similarly, despite expert recommendations, only about half of American women undergo regular Pap smear screening. Oddly enough, rates of Pap smear testing are remarkably similar between black and white women, suggesting that the difference in death rates may be a result of disparate access to treatment and care rather than to the screening programs themselves.

Whatever the reason for the difference, these new findings – particularly the observation that black women in the US are dying from cervical cancer at the same rate as their counterparts in far less economically developed countries – suggest that our current prevention, screening, and treatment programs are insufficient.

Sadly, given the political winds currently blowing in Washington and various state capitals, we probably won’t see any improvements soon. When a prominent anti-vaxxer is tapped to chair an important vaccine panel, when a vocal opponent of Planned Parenthood is nominated to head the Department of Health and Human Services, and when the first goal of the new Administration is to repeal a program that provides preventative health care to millions, a new and concerted push to promote cervical cancer prevention and treatment programs is unlikely to occur.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 26, 2017, and is available on the WAMC website.]

Posted in Cancer, Clinical Care, disadvantaged, Health Care | Leave a comment

The Breast Intentions Are Fraught With Disappointment

About once a year on average, I seem to create a bit of a stir with a commentary on breast cancer and screening guidelines. In those commentaries, I sometimes question the message that is given to American women about the utility of breast cancer screening programs. In the weeks that follow, both my email and my answering machine tend to fill up with people suggesting that I am wrong, sharing personal tales of invasive cancers that were detected only because of screening, and sometimes (although very rarely) hoping that a relative of mine is stricken with the disease.

Given this, let me start by saying that I take the topic of breast cancer very seriously. Breast cancer is one of the leading causes of cancer death among American women, second only to lung cancer. Nearly 250,000 new cases are detected each year in the United States, and over 40,000 women die annually from the disease.

All told, nearly 1 in 8 American women will be diagnosed with breast cancer during their lifetime, most of who have no familial history or genetic predisposition to the disease. Few families thus remain untouched by breast cancer, including mine. My aunt Kathryn finally succumbed to the disease in 2015 after battling it for nearly two decades.

Breast cancer is a public health crisis and one that deserves a strong, concerted and well-reasoned response. The problem, however, is that current public health messages about breast cancer screening and treatment are disjointed at best and dangerous at worst. Currently, different professional organizations in the US offer differing and often contradictory advice about if, how and when women should be screened.

For instance, the American College of Radiology takes a very aggressive stance on screening and treatment, recommending that all women get annual mammograms starting at the age of 40. Private organizations like the Susan G. Komen for the Cure similarly promote earlier and frequent screening.

By contrast, the US Preventive Services Task Force, an independent and non-partisan group of healthcare experts that looks at the risks and benefits of clinical screening and disease prevention programs, recommends that most women should delay getting regular mammograms until after they turn 50. The Task Force also recommends that screening be done every other year, not annually. Only women with a familial history of breast cancer should be screened earlier and more often.

Finally, groups like the American Cancer Society have staked out the middle ground. That organization, for example, recommends that women get annual mammograms from age 45 to 54, followed by screenings every other year once they turn 55.

This is all very confusing for most women, and it is about to be made even more so as a result of a Danish study published in this week in the Annals of Internal Medicine. That study, which looked at nearly 100,000 women diagnosed with breast cancer between 1980 and 2010, found that as many as one-third of those women might have been over-diagnosed and over-treated.

By comparing the medical records of those who participated in a mammographic screening program with those who did not, the Danish researchers discovered that there was no significant difference in the number of invasive tumors detected in the two groups. There was also no significant difference in the number of lives lost to cancer. Moreover, the number of non-malignant or slow-growing tumors detected was much higher in women who underwent regular mammography. Over 30 percent of the women in this group were diagnosed with a condition known as ductal carcinoma in situ, or DCIS.

Experts disagree on whether or not DCIS should be treated. It isn’t immediately life threatening, but some doctors still recommend treating it quickly and aggressively with chemotherapy, radiation or surgery in order to prevent it from becoming cancerous. Others, however, argue that DCIS carries such low risk of becoming invasive that it should be monitored only. The risks of treatment, these experts believe, outweigh the benefits. The Danish data, particularly the fact that the number of women with advanced tumors did not decrease despite an increase in the detection of ductal carcinoma in situ, would seem to support this theory.

As I have suggested previously, the information being given to women and to their doctors about if, when and how often to get mammograms is becoming increasingly confusing and conflicted. Rather than rely on one-size-fits-all guidelines from the American Cancer Society, American College of Radiology or the US Preventative Services Task Force, women should instead decide what is best for them based on their own personal circumstances, medical histories and prevention goals.

Someone with a familial history of cancer or someone who worries about their individual risk of cancer might choose to undergo more frequent screening, so long as they understand the potential harms of over-diagnosis. Others might instead choose to undergo less frequent screening, concluding the possibility that they might develop invasive cancer early doesn’t outweigh the risks of over-treatment.

I’ve said it before and I’ll say it again: screening saves lives, but not everyone needs to be screened early and often as some experts suggest.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 12, 2017, and is available on the WAMC website.]

Posted in Cancer, Clinical Care, Women | Leave a comment

A New Hope for Mental Illness

Every year, my husband and I throw a big New Year’s Eve party. Most of the time, we celebrate the coming of a new year with food, champagne and the company of good friends. This weekend’s party will be particularly poignant for me. I will be toasting not to the coming of 2017 but, rather, to the end of 2016.

This year has been particularly tumultuous for me, characterized by significant professional challenges and two recent hospitalizations. This year was also capped off by the passing of my mother, who recently succumbed to the very health problem that I have been struggling with for the past three months. The only positive thing to say about 2016 is that I have a new found appreciation for all that I have, and a plan to achieve better work-life balance in the coming year.

Of course, I am not the only person who has faced personal and professional challenges this year. In fact, my own struggles cannot compare to those whose lives have been irreparably changed by the war in Syria, the gun violence in Chicago, or the terror attacks in Belgium, Florida, France, Germany and elsewhere.

We’ve also lost what seems to be an extremely long list of political figures, sports legends, and celebrated entertainers in 2016, including Cuban revolutionary Fidel Castro, boxing champion and political activist Muhammad Ali, and award-winning artist Prince. In the past couple of days, we’ve even lost two of my teenage idols: musician George Michael and actress-writer Carrie Fisher [Author’s Note: After this commentary was written and recorded, it was announced that Carrie’s mother Debbie Reynolds also passed away unexpectedly]. While I don’t normally pay too much attention to comings and goings of celebrities like George and Carrie, I think it is worth commenting on the tragic deaths of these two public figures.

Both Carrie Fisher and George Michael – just like far too many celebrities and average folk — struggled with addiction. Mr. Michael’s abuse of cocaine and heroin was largely secret, coming to light (and inappropriately so, I might add) as the result of post-mortem interviews and tweets by his so-called friends and colleagues.

By contrast, Ms. Fisher’s battle with alcohol and prescription drug abuse was well known, chronicled by the actress herself in the autobiographical novel Postcards from the Edge. In going public about her struggles with sobriety, one of only a handful of celebrities who have done so willingly , Carrie helped to humanize the problem of addiction. One need only look to the flood of posts on social media following the news of Ms. Fisher’s death to understand just how much of an impact that she had in inspiring others to come to terms with their own addiction. Moreover, it wasn’t just alcoholism that Carrie Fisher struggled with. She was also an outspoken advocate for other mental illnesses, courageously sharing her own experience with bipolar disorder.

Sometimes called manic depression, bipolar disorder is a common illness that is characterized by sudden and extreme mood swings. As many as six million Americans — almost 3% of the adult population — suffer from the illness, experiencing dramatic shifts in mood and energy that range from euphoric highs (mania or hypomania) to crippling lows (depression). A related illness, major depressive disorder, affects approximately 15 million Americans; in any given year, nearly 7% of the adult population in the US will suffer from depression.

In most cases, depressive and bipolar disorders can be controlled with medication and psychological counseling. Because of the social stigma associated with mental illness, however, more than half of those living with these disorders go undiagnosed or untreated. Sadly, untreated depressive and bipolar disorders are a leading cause of suicide in the US, accounting for nearly two-thirds of the 30,000 suicides reported annually. Studies also suggest that 55% of those whose illness is untreated abuse illicit or prescription drugs while 45% abuse alcohol. Carrie Fisher herself believed that her years-long battle with addiction was a result of her undiagnosed bipolar disorder.

Along with other well-deserved epithets, 2016 will be remembered as the year that the mental health community lost a remarkable advocate. Despite Ms. Fisher’s untimely passing, however, there is still some hope (even “a new hope” should we want to play off of the subtitle to Star Wars Episode IV, the movie that made Carrie a household name). Shortly after her death last Tuesday, the hashtag #InHonorOfCarrie began to trend on Twitter. Within a couple of hours, nearly 200,000 people had used the hashtag to open up publicly about their own fight with mental illness.

Like her on-screen persona Leia Organa, Carrie Fisher seems to have inspired a revolt against the stigma of living with mental illness, inspiring a generation with her words. As she so famously stated in her 2008 novel Wishful Drinking, “being bipolar can be an all-consuming challenge, requiring a lot of stamina and even more courage, so if you’re living with this illness and functioning at all, it’s something to be proud of, not ashamed of. They should issue medals along with the steady stream of medication.”

Like so many who have left us this year, Carrie will be missed but the Rebellion that she once commanded will continue on.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 29, 2016, and is available on the WAMC website.]

Posted in Celebrities, Discrimination, Uncategorized | Leave a comment

Means to an End

My mother passed away last Wednesday. She was found unresponsive on the floor of her kitchen early Tuesday, in severe septic shock from untreated peritonitis and a perforated intestine. Although she was admitted to the intensive care unit and given aggressive medical treatment, she never regained consciousness. Because of her age and her poor health – exacerbated by the fact that she had ignored the signs and symptoms of sepsis for nearly a month – her body was simply not strong enough to fight the infection. Less than thirty-six hours after she was admitted to the hospital, we let her peacefully and painlessly slip away.

I’m telling you this story not to garner sympathy, but rather to share with you a lesson that I learned. Because my mother was unmarried and because she was unable to consent for treatment, according to the laws of the state in which she lived I was the de facto decision maker about her medical care. This is quite common. Unless otherwise indicated, family members – usually the spouse, adult children, adult siblings, and parents, in that order – are assumed to be the surrogate decision makers for a patient who cannot provide consent.

The decisions that I had to make, most of which were made at 2:30 in the morning after chatting briefly with the clinical care team, included the decision to make my mother DNR (‘do not resuscitate’) after her heart stopped for the third time. I also made the difficult decision to stop aggressive medical treatment and to move my mother to comfort care after a neurologist concluded that she had suffered extensive and irreversible brain damage.

A surrogate like myself is supposed to make these decisions by using a concept that we ethicists call substituted judgment: they should try to make the choice that the patient would have made had they be able to make decisions on their own behalf. Hopefully, I made the same decisions about my mother’s care that she would have had she been conscious and able to speak.

In reality, however, all of my decisions were made without any sense of what my mother would actually want. Although I am a bioethicist – part of my job involves teaching students about the importance of planning for situations like this – my own mother had not made any decisions about her end-of-life care. For example, she did not have an Advance Directive. Sometimes called a Living Will, an Advance Directive is a legal document that specifies the type of medical treatment a patient would want or not want should they be unable to make decisions for themselves.

My mother was not alone in lacking an Advance Directive. According to a recent survey of nearly 8,000 Americans, over two-thirds do not have an Advance Directive, Living Will, Health Care Proxy or similar document like the Physician Orders for Life-Sustaining Treatment (POLST) form. They don’t have these documents because they don’t know about them or because they assume their families already know their end-of-life wishes.

Unfortunately, the few studies that have looked at the accuracy of family decision-making have also found that most health care proxies, like myself, might as well just guess what their loved one wants. Surrogate accuracy is only slightly above chance, with rates of accuracy running about 50-65%. This is largely because too many people avoid conversations about end-of-life planning. Talking about death is difficult even under the best of circumstances, let alone our own end-of-life wishes. Even when we do touch upon the issue, it’s usually some glib remark about “not wanting to be a ‘vegetable’”.

This was exactly the situation that I faced. Other than an off-the-cuff remark over a decade ago about the Terri Schiavo case, my mother had never spoken about her end-of-life wishes with myself, my sister, or even her unmarried partner. Moreover, because my sister and I had a relationship with my mother that could be described as complex at best and tumultuous at worst, the likelihood that she would actually have been open to having this conversation was slightly less than zero. I knew she wouldn’t want to spend years in a persistent vegetative state, but I had no idea if she would want to be intubated, I had no idea if she would be willing to spend months in rehab, and I had no idea if she would be happy even if she had to spend her remaining years in a long-term care facility.

I’m at peace with the choices that I made regarding my mother’s care. Given the severity of her situation, it was not a question of if she would pass away. It was a question of when, and the decisions that I made in consultation with the critical care resident ensured that her last hours were comfortable and pain-free.

I consider myself lucky in that regard. While I regret the fact that I will never again have the chance to address the unresolved issues that made my relationship with my mother so challenging, I wasn’t forced to make any decisions that could have resulted in weeks, months or years of a slow and lingering death. Sadly, far too many spouses, adult children, and other surrogate decision makers aren’t so blessed; they spend months or years as caregivers and health care surrogates, watching a person they love battle illness without ever knowing if they made the right decisions.

And this is why it is so important that we all talk about end-of-life decision making with our loved ones, no matter our age or current health status. We all expect to live for decades more. But life is unpredictable, and the only thing that is certain is that none of us get out of it alive. While it might be difficult to contemplate our own mortality, we owe it to those that we love to make sure that they know what we want when the inevitable comes.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 15, 2016, and is available on the WAMC website.]

 

Posted in Decision Making, End-of-Life, Health Care | 1 Comment