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It’s 6:30 p.m. on a July Monday, and the Cullen Room at Busboys and Poets in Mount Vernon Triangle is full.
Around 50 people, including Ward 3 Councilmember Mary Cheh, are there to watch How to Die in Oregon, a documentary about terminally ill patients in that state, the first in the U.S. to legalize what proponents call “death with dignity.” The screening was sponsored by Compassion & Choices, a nonprofit that supports aid in dying, ahead of D.C.’s first hearing on a bill that would allow terminally ill patients with a prognosis of six months to live to obtain a prescription to end their lives.
“One of the things that struck me about a strategy is that I didn’t want it to be rushed,” Cheh, the bill’s introducer, tells a supporter during a post-screening Q&A. “I want to be able to talk to all of you… I don’t want this to be done lightly or cavalierly.”
Also in attendance is Ward 7 Councilmember Yvette Alexander, chair of the D.C. Council’s Committee on Health and Human Services. The bill must be voted out of her committee to be considered by the full Council.
Jade Wood, a D.C. resident and licensed psychotherapist, is here as well, talking about her friend Brittany Maynard. At 29, Maynard became the face of the death with dignity movement as she—young, beautiful, and dying of brain cancer—decided to move to Oregon in order to end her life.
“Brittany was one of my best friends. She was like a sister to me,” Wood tells the crowd. “She often said to me that, as strange as it sounded, as horrible as it was… to have such an abrupt end to her life, what was even worse for her was to think that there might be chance that she might not be able to die under her choice and under her own control.”
The crowd is overwhelmingly supportive of the bill—the toughest question Cheh faces is more of a logistical query about unused medication. Support is not quite as high citywide, but according to a poll commissioned by a pro-aid-in-dying group, 67 percent of District residents support death with dignity; support nationwide is about the same.
“I think the chief opponent of this legislation is people who don’t know what it’s really about,” Cheh says.
Over the past 20 years, three states have legalized death with dignity, while courts have affirmed aid in dying as a right in two others. As the push continues in more than 20 states, so do the difficult, emotional, and personal conversations in legislatures across the country. And as a hearing in D.C. later that week revealed, even in a progressive city, the passage of this legislation is anything but a foregone conclusion.
On the Tuesday before the bill’s first hearing, Mary Cheh is talking about death once again. It’s a topic she’ll have to discuss for the foreseeable future as she tries to get the death with dignity legislation she introduced in January passed.
“It’s an odd thing about legislation sometimes,” she says. “You get a feeling that the time is right for something, and I’ve just felt the time was right for this.”
Cheh, a constitutional law professor, isn’t sure when she first began thinking about the subject, but she remembers reading about the legal challenge to Oregon’s aid-in-dying law, which the Supreme Court upheld in 2006. She has a binder of research on the topic from 2011, a relic of a previous idea to introduce legislation. But now, with the battles for marriage equality and legalized marijuana in the District over—plus the national conversation on end-of-life choices sparked by Maynard’s death—the time seems right.
“What motivates me, it is kind of compassion,” Cheh says. “I have a libertarian streak in me that says you ought to have that control.”
Both Compassion & Choices and the Death with Dignity National Center, an Oregon nonprofit, are supporting Cheh’s effort. While in D.C., Death with Dignity Executive Director Peg Sandeen met with Alexander and “one or two” other councilmembers, Cheh says, to offer firsthand knowledge of how the legislation has been used in Oregon.
“A lot of this is based on worries that really are not well grounded,” Cheh says of opposition to the bill. “I think the opponent here is not any particular group, but misunderstanding about what the bill does.”
D.C.’s legislation is not revolutionary. As in many other jurisdictions that have or are considering aid in dying, D.C.’s bill is modeled off what was approved in Oregon in 1994 and put into effect in 1997.
After adult patients with a “terminal illness”—defined as an “incurable and irreversible disease”—are given a prognosis of six months or less to live and informed of the alternatives (like hospice), they may seek a prescription from a physician for aid-in-dying medication. Patients must make two oral requests and submit a written request witnessed by two people, one of whom isn’t related to the patient or isn’t entitled to part of their estate.
A physician or mental health professional must deem a patient “capable,” meaning he or she is “not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.” In addition, a physician must verify in writing that the patient is acting voluntarily.
Opponents call it physician-assisted suicide, while proponents argue against using the term: While the medication is prescribed by a doctor, patients must ultimately mix the pills with a liquid and consume it on their own. Physician participation is voluntary.
“Doctors say, ‘Do no harm.’ How does that translate when you’re in the end stages of a painful disease and you need a doctor to give you a prescription?” asks Cheh. “What’s do no harm? Is it harmful to say no?”
Cheh mentions Diane Rehm, a D.C. native who’s hosted her own show on WAMU since 1979. Rehm took a stance in favor of aid in dying after her husband of 54 years, John Rehm, who suffered from Parkinson’s disease, sought a way to end his life and was told by his doctor the only thing to do was abstain from food and water. He died ten days later.
“I thought, ‘Oh dear God, I just can’t bear this. I can’t stand the thought of him having to go through this.’ But he was so brave,” Rehm told Compassion & Choices. (Rehm says via email she won’t take a public position on D.C.’s bill.)
In the nearly 18 years since Oregon’s bill went into effect, Cheh and advocates say the opposition’s fears—coercion of the elderly and people with disabilities, inadequate safeguards against prescribing medication to a person with depression, an increase in suicides—haven’t panned out. Since 1997, 1,327 patients in Oregon have legally obtained death with dignity prescriptions, and 859 used the medication. Of the 859, 91.5 percent relayed concerns about losing autonomy, 88.7 percent said they weren’t able to engage in activities that made life enjoyable, and 40 percent said they were a burden on family and caregivers. Just 3.2 percent cited financial concerns.
If death with dignity was legalized, Cheh says she doesn’t know if she would seek a prescription if she was terminally ill. But she does hope the bill, as well as another measure that would allow patients to obtain a Medical Order for Scope of Treatment, will spur families to have formal end-of-life conversations, something she admits she’s neglected to do with her daughters.
“We ought to confront it for ourselves, but also for our families,” she says.
While Cheh believes a terminally ill person has the right to choose aid in dying, expanding that choice to people with chronic diseases, like dementia, is not in her plan. Beyond being “politically much too heavy a lift,” Cheh says that extension “might raise enough fears that people would be disturbed by the existence of the legislation.”
“I’m not asking that we go that far—nor do I intend to ask,” she says. “This is not a step on a path. It is of itself what it is, just like it’s been in Oregon.”
Cheh says she plans to do some form of outreach this summer to educate residents on exactly what the bill does—and doesn’t—do. In the fall, she expects the bill to continue its move through the Council. But Cheh recognizes that, even with discussion after discussion, not everyone will come around.
“If then they have some ideological opposition, then we’re stuck.”
On July 10, the Council’s Committee on Health and Human Services convened a hearing on the Death with Dignity Act. Seventy people signed up to testify; the hearing lasted more than nine hours.
The positions of the people in the packed Council chamber were apparent from the slogans on their stickers. In red T-shirts with the phrase “#AlwaysDignified” printed on the back were supporters of No DC Suicide, a coalition of groups opposed to the legislation.
As the hearing began, Cheh once again expressed her support for the measure, as did Ward 8 Councilmember LaRuby May. (Other health committee members David Grosso and Brianne Nadeau did not attend the hearing.)
“This bill is not intended, nor does it, incite or ignite fear for our residents—it actually does the opposite. It gives us options,” May said. “I’m confident that the provisions… protect people, protect those who simply want the option to transition in comfort and voluntarily.”
Not confident, however, was Dr. LaQuandra Nesbitt, director of the D.C. Department of Health, who voiced concerns about the legislation’s “questionable” efficacy in Oregon, the ability of prescription-writing physicians to determine competency, and possible public suicides.
“Would the proponents of this bill really contemplate allowing individuals to carry out their deaths in public areas in Washington, D.C.?” Nesbitt said. “Consider the scenario where a person’s dying wishes are to view the sunset over the Lincoln Memorial while taking their last breath. In the movies, the music rises, the scene fades, and credits roll. The reality, however, involves unpleasant tasks such as transporting the deceased and completing death certificates. In addition, while the drafters of the Oregon bill may have contemplated a natural surrounding in the Northwest Territories of the United States, the District attracts 19 million tourists a year and assisted deaths in highly visible and highly public areas could easily lead to public distress and disorder.”
Nesbitt’s concerns continued: “It is very difficult for a physician to accurately predict the six-month window for terminal illness”; “this bill, and laws like it elsewhere, do not provide for any specific criteria for terminal illness”; “another area of grave concern… is the real potential for abuse.”
“At the end of the day, we can all agree that there are worse things in life than death,” Nesbitt said. “However, the Death with Dignity legislation catapults the District into unchartered territories that we are not yet prepared to navigate.”
Over the nine hours, proponents like Maynard’s husband, Dan Diaz, Richard Rosendall of the Gay and Lesbian Activists Alliance, and Monica Hopkins-Maxwell of the ACLU of the Nation’s Capital provided testimony. Some of the residents in support of the bill were elderly, including a Ward 3 couple who, trading sentences, declared that they would help each other die when the time came. Two were lawyers, including Supreme Court litigator and Washington National Opera board member Jim Feldman. The only reverends to testify that day both did so in support. But just one person that day could testify to what’s it’s like to live facing a terminal illness.
Susan Farris, a 16-year resident of the District, was diagnosed with HER2-positive breast cancer in January 2012. By that point, the cancer had spread to her liver. She was 47.
“The joke was when they looked at my liver—or my joke was, because humor is the only way I can deal with this—was that, when they looked at my liver readouts, the heading should have said, ‘Insert tombstone here,’” she told reporters before the Council hearing.
Her initial treatment was disabling. “I was so exhausted that I was no longer able to really leave my house,” she said. “I had such bad neuropathy in my hands and feet that I would just fall over just walking down the street. Luckily, I discovered I had strong bones—I literally fell onto my face one time thinking I would crush my cheekbone… That was a horrific experience, and certainly a preview of what was to come.”
Farris decided to end her chemotherapy treatment after five months, but, luckily, the cancer was stable. On targeted therapies, Farris is doing well: She’s still able to work and go out with friends. But she knows it won’t last forever, and the treatments necessary to prolong her life will become progressively more “toxic” and debilitating.
“I don’t want to die. I have no interest in dying. I am fighting like hell to stay alive,” she said. “I don’t even want to talk about dying. In fact, I wasn’t really happy to be coming here today. But I consider this a service to come here.”
In front of the committee, Farris expressed her surprise at the number of opponents in the chamber. “I’m a bit nervous about this whole situation, one because there are so many people in the room who oppose something so vital to me. It kind of blew my mind.”
The many opponents who testified that day were united by shared concerns. Doctors from MedStar Georgetown University Hospital and Providence Hospital (both affiliated with the Catholic church), as well as one from Howard University, argued that prescribing a medication to end a life was diametrically opposed to their mission to save patients.
“Physician-assisted suicide… goes against everything we are as doctors,” said Dr. Sarah Murry of MedStar Georgetown.
Advocates for people with disabilities, including representatives from The Arc of DC and the National Council on Independent Living, argued that there aren’t enough safeguards in place to protect a vulnerable population already predisposed to depression.
“Depressed people will be harmed by this bill,” testified Anne Sommers of Not Dead Yet, raising concerns about “doctor shopping,” or seeking out a doctor solely to prescribe aid-in-dying medication.
The safeguards in the bill, Sam Crane of the Autistic Self Advocacy Network said outside the chamber, aren’t enough “to ameliorate our concerns that people with significant disabilities as a result of illness would find themselves with no choice other than assisted suicide.” That feeling could come from concerns about finances and being a burden, she said. There are also “internalized… negative attitudes” about disabilities that can lead to suicidal thoughts in people who are later happy they didn’t take their own lives.
That was the case for Georges Aguehounde of the DC Center for Independent Living, who was paralyzed in the early ’90s after being struck by a driver. “I wished I was dead,” he testified, but was ultimately glad he didn’t take his life.
Like Aguehounde, artist Bill Warrell, who co-founded the legendary restaurant and music venue d.c. space, approached the witness table in his wheelchair. At age 9, he was diagnosed with Ehlers-Danlos syndrome, a rare group of disorders that affects connective tissues. Warrell said he’s received hundreds of stitches to repair his thin skin, suffers from early-onset arthritis, and is in constant pain.
“One objection to this legislation being argued by organizations purporting to represent me and others like me is the notion that people with disabilities will be pressured to choose to die by those who might profit from their death. What foolishness to think that passing a bill is a ‘slippery slope’ allowing euthanasia for the disabled,” he testified. “I myself, considerably disabled, I do not have these fears. My only fear is not having the right or freedom to control my own destiny.”
Warrell said he recently visited Seattle and Portland, cities in states where death with dignity is legal, to consider relocation. But he wants to remain in D.C.
“I am fully prepared for the inevitable death that comes to us all. If I know mine is coming, and I believe it will be painful and prolonged, I want to be able to ask my doctor for an aid-in-dying prescription. What I really want to know is that I will be able to do that right here in D.C., in this beautiful and ugly city that I love.”
With the Council on recess until mid-September, the death with dignity debate will move away from the Wilson Building, but it won’t recede entirely. Compassion & Choices will continue to host film screenings, according to Regional Campaign and Outreach Manager Brandi Alexander, and use the time to “educate the Council and build up support in the District.” No DC Suicide is urging its supporters to contact members of the Committee on Health and Human Services to express their opposition to the bill.
Whether the bill will move out of committee in the fall remains to be seen. Councilmember Alexander says she’s heard the concerns from senior citizens and people with disabilities and has concerns of her own.
“My concern was the medical perspective on things, hospitals and physicians that were not supportive of this,” Alexander says, “because this is a bill that requires a cooperation of our medical community… Moving forward, we have to get that concern out of the way.”
She notes that the Bowser administration does not appear to support the bill in its current form, and the “majority of my colleagues… don’t seem to be comfortable even with the bill.”
Cheh is focused on ensuring that Alexander moves the bill to be marked up later this year. While adjustments to the legislation wouldn’t be made until that point, Cheh says she heard a “quite reasonable” suggestion from Councilmember Anita Bonds to add a provision that recommends people of faith seeking the medication consult their faith community. Even though the bill requires DOH to draft regulations if the bill is passed, there may be room to be more specific in the legislation about the disposal of unused medication, a possible fix for another concern.
“The fundamental soundness of the bill is, I think, attested to by the experience in Oregon and places where it’s applicable,” she says. “While we can learn from others’ adjustments or changes, I think they’ve come out with a very good bill in operation that has worked quite well.”
Of the objections the medical community raised at the hearing, Cheh points to the 54 percent of support among doctors nationwide for death with dignity. “I’m sure there are doctors who are opposed to other types of medical procedures, but the movement is clearly in the direction of allowing people to choose.”
As of press time, Cheh’s office had not spoken with DOH in the days after the hearing. But the councilmember wants to vanquish any concerns raised by Nesbitt, whose testimony may not have been “as well considered” as it should have been, she says.
Nesbitt’s hypothetical Lincoln Memorial suicide “struck me as one of these parade of horribles that have no basis in fact,” Cheh says. “It’s designed to raise something that’s not an issue.”
Cheh also takes issue with Nesbitt’s idea that the District would enter “unchartered territories” by passing the bill. “We can’t look at the years of experience [in other states] and say ‘D.C. is unique.’”
“We are unique in many ways,” she adds, “but we’re not unique in the need of people to have choice, and we’re not unique in the need for compassion for people on death’s doorstep.”