HHS “Conscience” Rule: What About End-of-Life Pain Care?

Barbara Coombs Lee

Most reactions to the HHS conscience rule focus on impending damage to reproductive services. But the rule will surely obstruct and delay good care in many instances, increasing the suffering of dying patients and their loved ones.

The administration, hurrying to cement its social agenda in place
before leaving town, adopted a most meddlesome, dangerous rule at
Health and Human Services.

The proposed "conscience" rule is scheduled to take effect on
January 19, 2009. Congress and President-elect Obama have separate and
distinct options to prevent implementation of this rule.

Under the guise of protecting those with strong religious and moral
convictions from workplace "discrimination," the rule encourages
zealous, sanctimonious healthcare workers to act out their convictions
at the expense of the patients they are supposed to serve.

Most commentary on this rule focuses on impending damage to
reproductive services and access to abortion and contraception. But at Compassion & Choices,
our concerns center on end-of-life care, especially the palliative care
measures that rescue patients from unbearable agony. This ill-conceived
rule will surely obstruct and delay good care in many instances,
increasing the suffering of dying patients and their loved ones.

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The pertinent section, 88.4 d 2,
bars health care institutions and employers from requiring "…any
individual to perform or assist in the performance of any part of a
health service program…" if it would offend his or her religious
beliefs or moral convictions. Health care workers cannot be fired or
disciplined for refusing to do their job based on their beliefs.
Absolute job protection extends to physicians, nurses, pharmacists,
respiratory therapists, IV technicians — apparently even cleaning and
maintenance staff.

Compassion & Choices submitted a letter stating its concerns
during the mandatory comment period. The comments went unheeded and the
final rule stands virtually unchanged from the one proposed.

Anyone who works in end-of-life care or health care policy, and
anyone who has cared for a loved one during the final stages of
terminal illness, knows we already have a problem, even without this
rule. Too much pain and suffering goes untreated or under-treated and
too many people die in agony. The Compassion & Choices legal team
has helped raise the standard of care by sponsoring helpful bills and
successfully challenging under-treated pain as a form of elder abuse, but the need for improvement remains great.

Now comes a federal rule encouraging workers to exercise their
idiosyncratic convictions at the expense of patient care. Employees
who, for example, might exalt suffering, or disapprove of discontinuing
feeding tubes or respiratory support have license under this rule to
refuse to deliver or support any treatment or procedure. They can do
this without prior notice or the courtesy of providing substitute
staff. End-of-life suffering often presents as a medical emergency.
Precipitous refusal could leave patients in agonizing pain or gasping
for air while others scramble to fill the refuser’s duties.

Our staff and volunteers deliver information and support to clients
and their families throughout the nation, and we hear many excuses for
under-treating end-of-life symptoms. Some are profound, like doctors
genuinely afraid to prescribe rapidly escalating doses of morphine and
other opioids that are often necessary to stay ahead of pain. They fear
a whistle blower might alert drug enforcement agents, initiating a
federal prosecution. Some excuses are downright silly, like the
determination to keep a dying person from becoming "an addict" in their
last days.

But the most wretched excuse for under-treating pain and other
agonies comes from pious, sanctimonious zealots. I recall one doctor
who told a client’s family not to expect total relief because "we all
have to suffer some" in dying.

This particular conviction finds support in the Ethical and Religious Directives for Catholic Healthcare, (ERDs)
which guide the behavior of every Catholic institution and healthcare
worker. ERD #61 instructs that dying patients whose pain,
breathlessness or other agony cannot be relieved by usual methods
should receive instruction in "the Christian understanding of
redemptive suffering."

Fortunately, presiding bishops and Catholic hospitals enforcing the
ERDs generally lean toward mercy and compassion in their
interpretation. But the existence of this rule threatens that mercy
with a new army of vigilantes authorized to further their patients’
redemption by slowing or withholding the medication that would relieve
their pain. If discovered, such sanctimonious saboteurs could not be
disciplined, fired, or even re-assigned, under this rule.

Most vulnerable is the compassionate end-of-life treatment known
variously as "terminal sedation" "palliative sedation" or "total
sedation." Conditions like bone metastasis or bowel obstruction can
cause pain so virulent it is relieved only by placing the patient in a
coma with strong sedatives and maintaining the coma until death. The authors at HHS apparently had terminal sedation (TS) in their sites in the draft proposal.
They revealed their disapproval when they erroneously referred to it as
"euthanasia," citing a 2007 New England Journal of Medicine report that
17% of physicians object to TS on moral grounds. While the final rule
did not refer to this pre-decisional citation, nothing suggests the
department abandoned TS as a target.

Pious believers stress conscious mental preparedness for death and
are reluctant to cause unconsciousness unless they deem it absolutely
necessary. (See ERD #61) Unaware of this, we were initially surprised
when Christian medical societies and Catholic hospitals fought a
California bill to inform patients about palliative sedation. The Right to Know End-of-Life Options Act (R2K) insures
patients will receive information about this treatment option when they
ask. Right-to-life publications reacted to R2K with contempt and
hysteria. They called this simple information law "nurse assisted
suicide," "euthanasia flirtation" and "suicide promoting."

Such vehement objection suggests right-to-life activists may
sabotage terminal sedation as a treatment option, with job security
guaranteed under the protections of the new rule.

Compassion & Choices has worked for years to raise the standard
of care for end-of-life pain and symptom management. We’ve litigated
under-treatment and sponsored bills to establish a right to pain care
and mandate pain care education as a condition of physician licensure.
It dismays us to know policies, laws and education efforts could fall
victim to healthcare workers encouraged to impose their personal
religious convictions on dying patients in every state.

Revocation of this rule should be high on the Obama administration’s
immediate agenda. If procedural requirements slow the revocation
process, Congress should act immediately to prevent the rule from
taking effect. Decency and mercy demand swift action.

Click here to urge Congress to take action today.

This piece is reposted from Huffington Post.

Analysis Human Rights

Living in the Shadow of Counterterrorism: A Daily Struggle for Muslim Women

Kanya D’Almeida

In the second part of Rewire’s “Living in the Shadow of Counterterrorism” series, we look at how Muslim families, particularly women, are forced to confront state violence on a daily basis­­—from living with the stigma of terrorism, to repairing their broken homes, to navigating what they say is a brutal and biased prison system.

This is the second article in Rewire’s “Living in the Shadow of Counterterrorism” series. You can read the other pieces in the series here.

When Virginia native Mariam Abu-Ali was 14 years old, her life abruptly turned upside down. It was 2003, two years after the September 11 attacks and well into an era of counterterrorism tactics that were systematically hollowing out Muslim residents’ civil liberties and constitutional protections in the United States. But the Abu-Ali family never imagined they would be caught up in the dragnet.

Mariam’s then-22-year-old brother, Ahmed Omar, had been studying in Medina, Saudi Arabia, when he was arrested in connection with a series of May 2003 terrorist attacks in Riyadh.

In an interview with Rewire, Mariam says her brother, who was born in Texas, was held in solitary confinement in a Saudi jail for nearly two years without ever being charged with a crime. During that time, Mariam tells Rewire over the phone, there is strong evidence that he was tortured. Although defense expert Dr. Allen Keller, director of the Program for Survivors of Torture at the Bellevue/NYU Hospital, examined Ahmed and testified at his U.S. trial to the evidence of torture, an appeals court eventually ruled that Ahmed’s statements to Saudi interrogators were “voluntary.”

When, after months of legal pressure from his family, he was finally returned to the United States, a court for the Eastern District of Virginia charged him with multiple counts, including conspiring with an Al-Qaeda cell in Medina to carry out terrorist attacks on U.S. soil. Following a trial that permitted the admission of what Mariam called “a coerced confession,” he was eventually sentenced to 30 years in prison, and later re-sentenced to life.

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Yet as legal experts like Elaine Cassel, author of The War on Civil Liberties: How Bush and Ashcroft Dismantled the Bill of Rights, have pointed out, “Nowhere in the indictment [was] Abu-Ali tied to any terrorist event or action”—either in the United States or in Saudi Arabia.

Instead, his case fell under the shadowy material support statutes that have governed much of the United States’ counterterrorism operation in the years since 9/11, under the USA Patriot Act of 2001. This set of laws allows the U.S. government to preemptively prosecute individuals for engaging in terrorism based on their perceived predisposition toward violence, rather than their actions.

Over the past 15 years, hundreds of Muslims have disappeared in a warren of these convoluted laws; they are currently locked up in high-security prisons around the country.

A constellation of families, scholars, activists, and civil rights organizations have long challenged the effects of material support charges, as well as the unfair trials and the lengthy and harsh prison sentences that tend to follow them. Over the past few years, they have come together in a campaign called No Separate Justice, an attempt to unite far-flung groups and individuals who are working to dismantle what they say is a parallel and unjust legal system for Muslim residents in post-9/11 America.

Women like Mariam Abu-Ali have been at the forefront of the movement—along with Zurata Duka and Shahina Parveen, whose stories Rewire has previously reported on—advocating on behalf of their loved ones.

In the second part of Rewire’s “Living in the Shadow of Counterterrorism” series, we look at how families, particularly women, are forced to confront state violence on a daily basis­­—from living with the stigma of terrorism, to repairing their broken homes, to navigating what they say is a brutal and biased prison system.

“Dangerous” Minds, Draconian Measures

Mariam Abu-Ali says her brother’s case represents many of the civil rights violations that have marred the decade and a half since 9/11, a sentiment that is echoed in the final opinion on Ahmed Omar’s case penned by the U.S. Court of Appeals for the Fourth Circuit.

In its unanimous decision to uphold the guilty verdict on nine terrorism-related counts against Ahmed in 2008, the three-judge bench wrote:

Persons of good will may disagree over the precise extent to which the formal criminal justice process must be utilized when those suspected of participation in terrorist cells and networks are involved … the criminal justice system is not without those attributes of adaptation that will permit it to function in the post-9/11 world.

While the opinion does not explicitly state what these “attributes of adaptation” are, studies on counterterrorism indicate they could refer to any number of legal practices that have become normalized since September 11. In particular, they could refer to the use of material support statutes, which have played a significant role in the prosecution of Muslim Americans like Ahmed Omar.

As FBI Assistant Director Gary Bald testified to the Senate Committee on the Judiciary in 2004:

It would be difficult to overstate the importance of the material support statutes to our ongoing counterterrorism efforts. The statutes are sufficiently broad to include terrorist financers and supporters who provide a variety of resources to terrorist networks. The statutes provide the investigative predicate which allows intervention at the earliest possible stage of terrorist planning to identify and arrest terrorists and supporters before a terrorist attack occurs. [Emphasis added.]

In short, material support statutes have enabled federal authorities to prosecute people based on suspicion of what they might do in the future rather than any overt criminal act. The statutes primarily refer to “support” for terrorist networks as weapons, arms training, or direct funding. Prosecutors, courts, and juries, however, have interpreted the laws much more broadly to encompass the sharing of religious or political texts online, casual conversations between friends, or charitable donations to organizations in areas controlled by terrorist groups.

In many instances, material support charges have amounted to nothing more than thought crimes, in which law-abiding Muslim residents have been penalized simply for expressing their religious and political views.

According to a 2014 report by Human Rights Watch, material support cases rose sharply in the decade following the September 11 attacks. Prior to 9/11, just six individuals had been charged under these laws in the United States. In the decade following, 168 of 917 domestic terrorism convictions analyzed by HRW fell under such statutes, accounting for 18 percent of all terrorism-related convictions in that time period.

Even a cursory look at some of these cases is sufficient to grasp the breadth of these laws, which have pushed deep into Muslim communities, tearing through many layers of social fabric along the way.

In 2012, the New York Times published an op-ed by Yale professor Andrew March on the case of Tarek Mehanna, a Pittsburgh-born doctor and community leader who was sentenced to 17 and a half years in prison because his opinions about Islam, expressed online, were deemed a form of material support for terrorist causes.

March wrote in the Times:

As a political scientist specializing in Islamic law and war, I frequently read, store, share and translate texts and videos by jihadi groups. As a political philosopher, I debate the ethics of killing. As a citizen, I express views, thoughts and emotions about killing to other citizens. As a human being, I sometimes feel joy (I am ashamed to admit) at the suffering of some humans and anger at the suffering of others. At Mr. Mehanna’s trial, I saw how those same actions can constitute federal crimes.

March’s op-ed illustrates a frightening truth about material support statutes: They allow for the preemptive prosecution of individuals who have not yet committed a crime but whom the government deems capable of possibly committing a crime in the future.

Other cases, such as the Holy Land Five, demonstrate a pattern in which material support laws have essentially criminalized charitable giving. The case involved the founders of the Holy Land Foundation, a Muslim charity that provided humanitarian aid to the needy, including women and children in Palestine. Though the government concluded that the Holy Land Foundation never directly aided a terrorist organization, it nonetheless prosecuted five of its members for funneling aid through charitable committees into areas controlled by Hamas, a designated Palestinian terrorist group, thereby violating material support statutes. Journalists called the verdict an attack on Islam itself, particularly the practice of zakat, which mandates that Muslims allocate a portion of their wealth or earnings for charitable causes.

Because cases based on material support statutes tend to paint the accused as extremely dangerous persons, they are often accompanied by harsh conditions of confinement, both pretrial and following a conviction.

From its very inception, the No Separate Justice (NSJ) campaign has fought this flawed notion, with mothers and sisters of the accused becoming the movement’s most prominent spokespeople. NSJ initially coalesced around the case of a Muslim American named Fahad Hashmi.

Hashmi had been working toward a master’s degree in international relations at London Metropolitan University when he was arrested at Heathrow Airport in 2006. In 2007 he became the first U.S. citizen to be extradited following the loosening of restrictions around the process after 9/11, according to an article by Jeanne Theoharis, a political science professor at Brooklyn College and co-founder of the NSJ campaign, who taught Hashmi as an undergraduate.

He was initially held in pretrial solitary confinement at the Metropolitan Correction Center (MCC) in downtown Manhattan. MCC’s notoriety was cemented in a 2010 New York Times article that quoted a former Guantanamo detainee, who was also held at the MCC, as saying the Cuban military prison was “more pleasant” and “more relaxed” than the federal detention facility in New York City.

Hashmi was also subjected to special administrative measures, government restrictions on a terror suspect’s communications that amount to a gag order on the case and their conditions of confinement. Advocates say these were drastic measures relative to the charges against him: Hashmi’s only crime, according to Theoharis’ article, was allowing an acquaintance to spend a night in his apartment, an acquaintance who would later deliver a suitcase of raincoats and waterproof socks to Al Qaeda members. This same acquaintance would later become a cooperating witness for the government in exchange for a more lenient sentence, and testify against Hashmi in a trial that ended with a guilty verdict and a 15-year sentence.

Stunned by Hashmi’s conditions of confinement, a group called Theaters Against War linked arms with Educators for Civil Liberties and the Muslim Justice Initiative to host weekly vigils outside the MCC in 2009. These gatherings, which continue to this day, form the nucleus of the NSJ movement.

“We wanted to build a coalition so people from different backgrounds could bring their institutional expertise and moral conscience into the same arena as family members, and create a space where people could express outrage at what was happening,” Sally Eberhardt, one of NSJ’s earliest organizers, tells Rewire.

At first, larger civil liberties groups kept their distance, possibly because “this isn’t exactly the most funder-friendly issue in the world,” Eberhardt suggests. But advocates persisted, holding candlelight protests even on the bitterest winter nights, singing songs and chanting poems in the shadow of the detention center. Those intimate gatherings formed the basis of what is now a national movement, encompassing multiple organizations and dozens of families.

Two outspoken leaders are the Sadequee sisters, Bangladeshi Americans who have been among the strongest advocates of prisoners’ rights and the most public critics of the government’s targeting of Muslim men—including their brother, Shifa.

From the Streets to the Prayer Rug: Pushing Back Against State Violence

Ehsanul “Shifa” Sadequee was born in Virginia and grew up in Atlanta, Georgia, the youngest of four siblings in a Bangladeshi-American family. According to his sisters, he was a curious and exceptionally kind child, who by his early teens had grown into a devout and diligent religious scholar.

In 2005, when he was just 18 years old, Shifa traveled to Bangladesh. In April 2006 he got married, but 12 days after his wedding, Bangladeshi authorities took and detained him, apparently at the behest of the U.S. government, for allegedly making false statements to the FBI at John F. Kennedy Airport on his way to Bangladesh the previous year.

Shifa’s sister Sonali, who is based in Atlanta, tells Rewire that this initial charge and arrest, which the High Court Division of the Supreme Court of Bangladesh later deemed a violation of international laws, was a terrifying process for the entire family. For days after Shifa was taken they had no news of his whereabouts. Fears that he would somehow wind up in Guantanamo, ensnared in the web of the “war on terror,” gnawed at the edges of their minds but the family pushed these aside, telling themselves that because Shifa had done nothing wrong, they had nothing to fear. With the phone ringing off the hook and the television on 24/7, they gleaned what scraps of information they could from CNN news reports.

It transpired that upon his arrest in Bangladesh, Shifa was stripped naked, wrapped in plastic, and flown via Alaska to New York, Sonali says, where he spent over three months at the Metropolitan Detention Center (MDC) in Brooklyn before being transferred to the federal penitentiary in Atlanta, Georgia. Shifa spent more than three years in pretrial solitary confinement before ever being formally charged with a crime, his sister said.

Once Shifa was inside the criminal justice system, Sonali explains, federal authorities quickly dropped the initial charges against him and began to build a case around allegations of material support.

At the heart of the case was Shifa’s renown as an Islamic scholar with a larger-than-life online persona—he had studied classical Arabic and the history of religion as a student in Canada and was a gifted translator, often sharing interpretations of Islamic or political texts on the internet. The Sadequee family says Shifa’s trial was riddled with shortcomings, including the use of previously classified evidence and the selection of jurors who admitted to having anti-Muslim bias—which Human Rights Watch says is a common problem. In addition, the prosecution used Shifa’s ideology as a brush with which to paint him as a fearsome radical, on the verge of carrying out a violent attack on U.S. soil.

Although Shifa, according to Sonali, never engaged in any actions beyond practicing free speech, he was found guilty on four terrorism counts in 2009 and, at the age of 23, sentenced to 17 years in federal prison. He represented himself at the trial, making him one of the first Muslim youth to do so in a national security case, according to his sisters.

Both Sonali and Sharmin Sadequee, who is based in New York, have been mobilizing on his behalf for over a decade. After years of shielding themselves from the backlash of isolation and Islamophobia that invariably accompanies charges of terrorism, the young women have turned their advocacy into an art form.

In an interview with Rewire, Sonali explains that when her brother was arrested, the women in her family developed an organic division of labor that allowed them to form a united front against the horror and uncertainty that had descended on their lives.

“I was already plugged into the social justice community in Atlanta, so I saw my role as tapping into that support network, bringing resources to my family to make sure we all understood the human rights issues involved, ensuring we had the skills to confront the media, which was bombarding us at the time,” she says. Her sister, meanwhile, dealt with the prisons, navigating bureaucratic visitation rules and ensuring Shifa had what he needed on the inside.

“Sharmin and my mother also reached out to the Muslim community, to mosques and other groups,” Sonali continues. “And the rest of the time, my mother was on the prayer rug. I don’t know how many hours she spent kneeling and praying.”

They built a website that is always fresh with the latest news about Shifa’s case and serves as a hub for their activism—they recently announced a letter-writing campaign to mark Ramadan, inviting more than 1,000 followers of a Justice for Shifa Facebook group to send greeting cards to Muslim prisoners. Countless hours are eaten up attending rallies, speaking on panels, or sitting with reporters, patiently unpacking the messy details of Shifa’s case.

The irony is that while the Sadequee sisters make a powerful team, they are constantly called upon to do what they say is the hardest thing of all: relive a time in their lives they would rather forget.

“I don’t like to do these interviews,” Sonali says bluntly. “I don’t enjoy them at all—but I recognize they have to be done. Only by sharing what happened to us, by talking about it, will others learn from it.”

They say they have been trying to create collective responses to state violence resulting from the “war on terror,” and hope to combat the government’s tactics of fear and isolation by building community power and resiliency. But this is easier said than done: Not only must the Sadequees contend with the lingering stigma of Shifa’s trial, but they also, until very recently, had to deal with the trauma of visiting their brother in a prison unit that has been described by former detainees as “Little Gitmo.”

CMUs: “A Religious and Political Quarantine”

Between 2009 and 2015, Shifa was imprisoned in the Communications Management Unit (CMU) at the federal detention center in Terre Haute, Indiana, a segregated portion of the prison comprised almost exclusively of Muslim men that has been the subject of a legal battle since 2010.

This past March, the Center for Constitutional Rights (CCR) urged the Court of Appeals for the District of Columbia to reinstate a lawsuit the group first filed six years ago challenging CMUs, which the Bureau of Prisons (BOP) quietly ushered into existence under the Bush administration—the first in 2006 in Indiana, and the second in 2008 in Marion, Illinois.

Conditions in these units, which house 60 to 70 prisoners combined, are harsh, according to the CCR: Although inmates are not held in isolation, they are banned from having any physical contact with family members during visits, and their calls are restricted to two per week, each for 15 minutes. By contrast, other BOP inmates are allowed 300 minutes worth of calls every month.

CCR claims the CMUs violate prisoners’ procedural due process rights, and argue that placement in these units is both arbitrary and retaliatory, with Muslim prisoners vastly overrepresented.

“Between 2006 and 2014, about 170 individuals filtered through these units and 101 of them—about 60 percent—were Muslims, even though Muslims only constitute 6 percent of the general federal prison population,” CCR Senior Staff Attorney Rachel Meeropol tells Rewire in a phone interview.

CCR reported in 2010 that in Marion, 72 percent of current CMU prisoners were Muslim, a 1,200 percent overrepresentation, while two-thirds of the CMU population in Terra Haute was Muslim, 1,000 percent higher than the national average of Muslim prisoners in federal facilities.

“We are challenging the lack of procedural protections before prisoners are placed in the CMU and also alleging that placement is in retaliation for protected political and religious speech,” Meeropol says, pointing out that inmates in the CMU are seldom given reasons for why they were moved into the units, and are routinely denied opportunities to earn their release into general population.

“CMUs are essentially a religious and political quarantine, the same kind of segregation that has supposedly been outlawed in this country,” she added.

In response to multiple requests for comment about these allegations, Justin Long with the Office of Public Affairs at the Information, Policy and Public Affairs Division for the BOP said in an email to Rewire, “The Bureau of Prisons cannot comment on matters currently in litigation,” and directed Rewire to the Bureau’s web page on CMUs.

In addition to being hard on inmates, Meeropol says CMUs are also “debilitating” for families, especially those with young children who cannot communicate with their fathers through letters, and often cannot understand why they are forced to speak to them through glass, using phones that are monitored by prison staff.

“Several mothers have told me that they’ve stopped bringing their children on visits because it was just too devastating,” Meeropol says.

The Collective Trauma of “Supermax” Prisons and Solitary Confinement

The alternative, some might say, is even worse. All over the country, Muslim prisoners are serving decades-long sentences in solitary confinement, which the United Nations has recognized as a form of torture. Advocates and relatives of terror suspects, or those incarcerated on terrorism charges, have long cried foul over these conditions of confinement, which they say is a form of collective punishment on entire families.

Zurata Duka, whose three sons, Dritan, Shain, and Eljvir were arrested in a manufactured terror plot by the government in 2007, is well aware of the toll of solitary confinement. Her sons have spent dozens of years between them in complete isolation, including long stints at the maximum-security facility in Florence, Colorado.

“My sons are strong—they never let us see them cry, even when their daughters are crying on the other side of the glass,” she says to Rewire. “But once my son Dritan told me he nearly lost his mind in isolation.”

Before his arrest, Zurata tells Rewire, Dritan had been very close with his youngest daughter. Every night he would put her to sleep, stroking her hair and singing lullabies. In those early days after he was taken away, the little girl would lie awake at night, calling out for her father. Unbeknownst to the family, thousands of miles away, Dritan was experiencing something similar.

“He told me, ‘Mom, I don’t know what happened. For three days I just lay there, stroking my pillow, thinking it was [his daughter]. I didn’t know who I was and I don’t know how I came back,’” Zurata recalls him saying.

His daughter was so desperate to see him that one day she penned a note to the president. It read: “Dear Mr. Obama. Today is my birthday. I am five years old. Please, if you can, bring my father back just for one day, so I can hug and kiss him, and then, if you want, you can take him back again.” Zurata says she mailed the letter to the White House. She never heard back.

Almost every family has a similar story. According to Mariam Abu-Ali, conditions of confinement often come up at annual gatherings of affected families, which she organizes in her role as director of the Prisoners and Families Committee at the National Coalition to Protect Civil Freedoms.

“About 90 percent of the attendees are women,” she says in a phone interview with Rewire, “and they bring a lot of pain and anxiety into the room. But I’d say the meetings are cathartic,” she adds. “It’s the place where we build bonds with the only people who know what we’re going through.”

Several women who’ve attended the conference in the past tell Rewire they are powerful spaces, offering families a rare chance to speak openly about their lives without fear of being misunderstood, judged, or pitied. It is also a moment for families, particularly women, to share in the collective nature of their trauma, especially the pain of incarceration.

In the 13 years that her brother has served, Mariam says she has come to the painful realization that prisons don’t just lock up individuals—they are a form of bondage on the entire family.

Because Ahmed Omar is imprisoned 1,600 miles from the family’s home in Virginia, in one of the BOP’s maximum-security facilities in Colorado, they only see him once or twice a year. Visits are limited to three family members at a time, meaning Mariam has not seen Ahmed in two years. He reserves his two monthly phone calls for his parents, so she can only hope to talk to him when she visits them. Even these calls are a source of enormous frustration. As she wrote in a recent op-ed:

My mom has spent every Tuesday and Thursday of the last decade, at home, sitting by the phone, patiently waiting for a call that sometimes did not come. And when the call does come, what can one even discuss in 15 minutes? Do you ask him how he’s doing? How can you even ask him how he’s feeling? Do you discuss his prison conditions? His legal case? How do you break the news to him when his aunt or grandfather has passed away?

“What you have to understand is that my brother’s case wasn’t just one devastating ‘moment’ in our lives—it’s a lifelong struggle,” Mariam tells Rewire. “This is not something you ever get used to, or accept. It’s about learning new ways of coping every single day, like living with a chronic illness.”

Each day brings fresh challenges, and tough decisions. For instance, Mariam used to maintain a website, manage a Facebook page, and post daily updates on a Twitter account all relating to her brother’s case. One day she felt she just couldn’t do it anymore.

“At a point you have to ask yourself—do I work full time and provide for my family or do I advocate full time on behalf of my loved one?” she asks. “This work, it’s emotionally draining, it’s a daily struggle and it doesn’t necessarily get easier with time.”

CORRECTION: An earlier version of this article misidentified the officials whom Shifa Sadequee had been accused of making false statements to. It was FBI officers, not immigration officials.

Commentary Abortion

The Institutionalization of Abortion Stigma: What Care at an Ambulatory Surgical Center Can Look Like

Annika Mukherjee

Under HB 2, Texas' omnibus anti-abortion law, doctors must fulfill medically unnecessary requirements just to stay open, forgoing a patient’s comfort.

It only takes a visit to one community clinic and one ambulatory surgical center to see how HB 2, Texas’ omnibus anti-abortion law, is taking its toll on patient care. Doctors must now fulfill medically unnecessary requirements just to stay open, forgoing a patient’s comfort.

This situation will only get worse if the Supreme Court lets HB 2 stand. The Court, when its term begins October 5, could take up a challenge from reproductive rights advocates to “determine whether Texas can force more than 75 percent of the State’s abortion clinics to close.” While we wait to hear from the Court, I’d like to share my experience of touring two clinics—one that was constructed before HB 2 and one that was built to comply with the restrictive law.

Whole Woman’s Health (WWH) is a feminist organization that offers comprehensive gynecology services for people, including abortion care. During my internship at NARAL Pro-Choice Texas, Marva Sadler, WWH’s director of Clinical Services, gave us a tour of the organization’s San Antonio clinic. Sadler led us around the facilities, as if we were patients, so we could get a sense of the experience, from sitting in the waiting room to recovering in the Aftercare room. WWH San Antonio creates a unique and individualized experience for people obtaining abortions, actively fighting shame and honoring their individual experiences through soothing purple walls and lighting, empowering artwork, rooms named after powerful women, and a comforting atmosphere.

The clinic visit starts with counseling and then a one-on-one consultation with the doctor who would be performing the abortion, to answer any questions and to provide total awareness of the patient’s various options. Family members and escorts are welcome to accompany the patient throughout the process, although the patient is also given confidential time alone with the clinic staff, who are well-trained to identify issues like coercion, domestic abuse, and human trafficking. The patient also watches the Whole Woman’s Health video, which leads the patient through the entire process of getting an abortion “from the moment a patient walks through the door to when she leaves from recovery.” The patient has many opportunities to ask questions, discuss their options, and think through what is best for them.

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Whole Woman’s Health Director of Clinical Services Marva Sadler stands in the operating room at Whole Woman’s Health of San Antonio. If House Bill 2 were to go into effect, this type of room wouldn’t be able to be used for abortion procedures

Whole Woman’s Health Director of Clinical Services Marva Sadler stands in the operating room at Whole Woman’s Health of San Antonio. If HB 2 were to go into effect, this type of room wouldn’t be able to be used for abortion procedures

The operating room at the regular, non-ambulatory clinic is a small, intimate space with a lamp and two medical devices, an ultrasound system and a suction machine. The room is comforting and supportive, especially because an escort can act as a hand-holder throughout the process. The doctor’s patient-centered practice contributes to the warm atmosphere, as the patient and doctor have already been acquainted through counseling, and the doctor talks the patient through the procedure, explaining what is happening along the way. At WWH, they call this “verbicaine.” As Sadler described it: “Nine times out of ten, without any sedation, we talk patients through their procedures. We start a totally different conversation about something totally different, and then when they realize that the conversation is over, the procedure is over.”

The procedure is usually over within eight to ten minutes.

At the end, patients enter the Aftercare room: a space lit by lamps with purple blankets and lush reclining chairs. They can have “tranquili-tea”—a WWH-exclusive, specially brewed tea to help with cramping—use heating pads, and talk to staff and their escort(s).

“This is where the emotion happens,” says Sadler. Aftercare is where Whole Woman’s Health staff “really [get] to put their special touch in with patients, and this is where the difference happens. This is where they’re individualizing, and they get to make a difference in a life.”

Whole Woman’s Health erases stigma from the abortion process and transforms it into a wholesome experience centered on the patient’s needs. WWH’s staff are trained to break down the walls of abortion stigma in a safe, comforting and nonjudgmental environment, making sure they’re caring for the patient holistically from the time they walk into the clinic until after the procedure and follow-up appointment.

Unfortunately, restrictions like those in HB 2 have completely compromised WWH’s methods.

HB 2, among other things, requires that all abortion clinics meet the building standards of an ambulatory surgical center (ASC). Should this provision of HB 2 go into effect, only nine clinics would be able to serve all of Texas (see a comparison of the requirements here). After the Fifth Circuit Court of Appeals ruled to uphold HB 2’s provisions, Whole Woman’s Health, along with other Texas abortion providers and led by the Center for Reproductive Rights, took the law to the Supreme Court. The Supreme Court then granted a stay, blocking that provision of the law from going into effect while the Court decides whether or not to hear the case.

To comply with the state’s new restrictive abortion legislation, WWH constructed an ambulatory surgical center in 2010 that provides a vastly different patient experience. We toured that clinic, which is located across the parking lot from WWH’s regularly licensed abortion clinic, as well.

First entering the ASC clinic’s waiting room, we saw the same purple walls, but throughout the rest of the facility, it was stark white, an official ASC regulation. The atmosphere immediately transitioned into that of a shameful “asylum,” as Sadler put it. Notices and warnings were posted everywhere, where artwork might be if it were allowed. Alarm systems (or, as staff call it, “money hanging on the walls”) are plastered throughout the facility, rarely, if ever, used. There are internal alarm systems, hospital-grade fire alarm systems with sprinklers, a guest monitor, a generator monitor, and an emergency generatorall of which need to be tested and documented every day. These are extra obligations and extra money that are only a requirement of an ASC, adding nothing beneficial to the abortion procedure or to patient health and safety.

A gas line pipes through the wall in Whole Woman’s Health’s ambulatory surgical center. This is among the many pieces of medical equipment required for an ambulatory surgical center, but is never used during an abortion procedure.

A gas line pipes through the wall in Whole Woman’s Health’s ambulatory surgical center. This is among the many pieces of medical equipment required for an ambulatory surgical center, but is never used during an abortion procedure.

The preoperative room has bright, blinding overhead lighting that makes you feel like you’re being interrogated. Many different contraptions and systems are wired across and through the walls, including different gases, chemicals, and canisters.

In the five years that WWH has had this ASC, Sadler says, they haven’t needed to use this equipment once.

In spite of this, the canisters have to be replaced when they get old, the cords to the equipment have to be checked everyday, and IV access has to be maintained, whether the patient wants sedation or not.

Another requirement that jeopardizes the patient’s comfort is that they have to get completely undressed and put on a hospital gown, surgical booties, and a surgical bonnet. Patients aren’t allowed to walk around like they would in a regular clinic, but have to lay on a gurney, wheeled to and from the operating room. When abortion is treated like a dangerous surgery, it takes away the independence and strength of the decision to have one. Obviously, these provisions are necessary for facilities that provide intensive, invasive procedures, but for abortion care, this is absolute overkill and a waste of money, not to mention an uncomfortable experience for the patient. It serves to do nothing but further stigmatize one of the safest procedures available in health care.

The halls of the ASC clinic at Whole Woman’s Health of San Antonio consisted of other specific requirements that don’t seem to have any real use: a pharmacy with required medication that doctors there have never used and do not need to provide abortions (“When these meds expire, we just throw them away and order more,” says Sadler), crash carts stocked with medication that can be $200 a bottle, male and female locker rooms, two color-coded janitor’s closets, and a blanket warmer. ASC requirements even took away WWH’s special touch of providing purple blankets; the blankets have to be white.

The operating room at Whole Woman’s Health of San Antonio’s ambulatory surgical center, which meets all of the requirements of House Bill 2, even if they aren’t needed for an abortion procedure.

The operating room at Whole Woman’s Health of San Antonio’s ambulatory surgical center, which meets all of the requirements of HB 2, even if they aren’t needed for an abortion procedure.

In the ASC clinic, the process is much more intimidating. It was massive, with bright “alien eyes” staring down at us, filled with complex machines, even though abortion care only requires the ultrasound and suction machines. According to Sadler, the patient is strapped down onto the table—nude in a 60-degree facility—arms restricted with straps on both sides of the table that keep her from moving. The only people allowed in the room are the doctor, registered nurses, and surgical techs. Because the patient is not allowed to have an escort in the room, no one is there to hold her hand. As the doctors are maintaining all of the different equipment, that verbal connection and emotional touch found across the street at the non-ASC clinic is lost here.

“[The patient] is absolutely alone because there is no one there to hold her hand throughout the whole thing. It’s horrible,” says Sadler, staring down at the ASC clinic’s emotionless surgical table. “It’s really hard to watch. It’s night and day between this and the [other] clinic.”

Because the doctor can’t reasonably talk the patient through the procedure because of the masks on her face and the loud air pressure system, Sadler says, “there’s no conversation at all. It’s just surgery.” Doctors at Whole Woman’s Health still attempt to stop at the table before performing the surgery to let the patient know that “it’s not some stranger coming in with a mask on her face, taking over,” says Sadler. “Just to remind the patient of who [the doctor] is, and that everything will be OK.”

The recovery room requires patients to lie on cage-like beds, to be hooked up to three-lead monitors, with disturbing beeping and clashing noises, behind a curtain that closes them off from the rest of the room. They are still undressed and not allowed any sort of company. They can’t even drink tea because of ASC requirements mandating such clinics serve only pre-packaged food, so patients are given only Capri Sun and Goldfish, as if they’re children.

Sterile gurneys like these are required to be in an ambulatory surgical center’s recovery room, as opposed to the comfortable recliners and purple blankets of Whole Woman’s Health’s other locations

Sterile gurneys like these are required to be in an ambulatory surgical center’s recovery room, as opposed to the comfortable recliners and purple blankets of Whole Woman’s Health’s other locations.

“A lot of times a woman has put on their strong face, until it’s over, and this is where the emotion happens. There’s no room for emotions in this room,” says Sadler. “Because of the limited staff and lack of escort, there are times when she is left alone, and that’s really hard for us because that’s not who we are.”

In the recovery area, there are still mechanisms like suction machines, oxygen piping, or positive pressure systems that never get used but need to be tested every day. WWH is forced to pay about $5,000 to $7,000 a month for outside companies to test all of its equipment, even though the equipment will never actually be used.

Maintaining extra financial obligations while attempting to maintain WWH’s philosophy of quality care results in professional sacrifices from the staff. Sadler explained, “The money that we were using for staff development and staff wellness, we’re now pushing that in other places. So now we’re having to pick and grab and figure out how to keep up who and what we are, without losing that, but still staying compliant with all of the rest of this ridiculousness. We’ve managed, but I’m telling you we’ve been tired at the end of the day, and it would definitely be great to take a breath.”

The entrance to a men’s locker room at Whole Woman’s Health of San Antonio’s ambulatory surgical center. ASCs require both women’s and men’s locker rooms on site, another requirement of House Bill 2 that is absolutely not needed in abortion care.

The entrance to a men’s locker room at Whole Woman’s Health of San Antonio’s ambulatory surgical center. ASC requirements mandate both women’s and men’s locker rooms on site.

Sadler says that patients often ask why their families can’t accompany them into surgery or recovery or why the clinic has to comply with the ridiculous restrictions that the state requires.

“It didn’t used to be this way. Unfortunately for staff, it’s hard to explain something that makes no sense.”

If the Supreme Court rules in favor of HB 2, the state will force all abortionsboth the surgical procedure and medical abortions (with pills)—to be performed only in a clinic that meets ASC standards. This clearly represents the institutionalization of stigma.

When it comes to Whole Woman’s Health, in the non-ASC clinic, the patient is allowed to take ownership of their own body; they’re allowed to be comforted and allowed to walk away with a comfortable experience. In the ASC clinic, the process is intimidating and terrifying. HB 2 makes the abortion process more about compliance with a law intended to shut down abortion clinics than the care and safety of patients. Texans are hoping that the Supreme Court will agree.