Desperate to die
A year after its implementation, California’s End of Life Option Act provides only patchwork relief to terminal patients
Past the double sets of sliding doors and a pharmacy bustling with gray-faced patients, up one floor and across from the pediatric specialties department, Elisabeth Hosseini shifts on a crepe paper mat waiting to learn how much time she has left. Sitting on an exam table, my mother gestures to a row of glass waste containers standing at attention in the corner of her oncologist’s small office.
“Those are for me,” she says, trying to lift our spirits.
Dad and I wear sandbagged expressions. We’re a tough audience.
It’s September 7, 2016. In 45 days, my mom will be gone.
But we don’t know that yet.
For almost as long as I can remember, my mother has been fighting for her life. In 1994, she was diagnosed with multiple myeloma, a blood cancer that warps the protein cells inside bone marrow like a sweeping zombie plague. The cells stop producing necessary antibodies. Bones rot and crack from the inside. Organs falter. There is no cure.
That was more than 22 years ago. By rejecting traditional cancer treatments and embracing holistic remedies, my iron-willed German mother quadrupled the average life expectancy and confounded her physicians.
“Raheem, I will beat this,” she used to tell me, her eyes crackling with a blue-green fire. Defiance always looked so beautiful on her.
But every heroine’s story ends eventually. And while my mother had been preparing her own final chapter for years, a well-intentioned bureaucracy was about to stand in her way.
A month earlier, Mom’s cancer sank to new depths. A mysterious fluid began filling her abdomen, constricting her lungs and heart and whipsawing us into emergency rooms in search of relief and answers. Her body was taking on water like a ship with a burst hull. But the doctors didn’t know where to find the leak or what it portended.
We had our suspicions, but no one wanted to utter them. No one wanted to believe that Elisabeth Katharina Hosseini—daughter of Tornow, Germany, crosser of oceans, uniter of cultures, woman of our dreams—was mortal after all.
The door opens. Dr. Philip Sardar enters with a file folder in his hand and pinched jowls. Mom starts to ask a question about her liver, but he interjects.
“Just listen to me for a second,” the longtime Kaiser Permanente oncologist says in a thick voice. Sardar says something about the yellow brine they’ve been pumping out of her, how it’s rich in protein that should be coating her blood vessels. But instead, he says, “Your liver is weeping.”
I’ve never heard something so terrifying put so poetically.
Then Sardar breaks the news. “It’s going to be hard for you to sustain living like this for more than a few months,” he says.
This cluttered room with its walls closing in suddenly feels like a trap we should have seen coming. I want to scoop Mom up and take us far from this hopeless world of pastel waiting areas, vampiric needles, sour smells and inscrutable terminology that never means anything until it means you’re finished. But Mom doesn’t budge. She was always the brave one.
“So how many more months is it?” she asks, point-blank.
Sardar has a hard time looking her in the eyes. He’s grown fond of this stubborn woman who never listens to him. He wants to believe she’ll prove him wrong again, like she did so many times before, he tells her. But down deep he knows better. “My concern is, no matter how strong you are, nobody can survive like this more than two, three months,” Sardar parses out gradually.
“Well, there’s the end-of-life pill, right?” Mom says.
“You can choose end of life,” she says.
“Yes,” her doctor says.
“Because I don’t want to suffer,” my mother says.A mother's journey
Long before her myeloma crossed the terminal threshold, Mom knew how she wanted to end her life. She spoke often and clearly about her desire for a medically assisted death that was both quick and painless.
As was typical for Elisabeth, who flouted Jim Crow laws as a lovestruck girl in segregated South Carolina before cutting a proto-feminist path westward, my mom was ahead of her time.
In March 2014, for instance, right before being told her latest bone marrow exam indicated her “smoldering” myeloma had reached a feverish tipping point, Mom mused on the distance between her home in Folsom and Washington and Oregon, the nearest states with medical suicide laws at the time.
“That’s a long journey,” she observed. “Wow.”
When she later learned that those states required at least six months of residency before a patient would even be considered eligible, she was deflated. “Furchtbar,” she said in German. “Terrible.”
Some time later, I dropped by to check on Mom before heading to work. Her immune system had long abandoned her. Pneumonia visited her as often as the common cold, searing aches crawled up her ear canals and down her sides like poltergeists, and sleep was a lottery she never won. Now, her heart was threatening to give out, in more ways than one.
Confined to her bed, my mother confessed that her sister Ellen was socking away sleeping pills on her behalf. “I can’t do it anymore,” she cried helplessly.
“I know, Mom, I know,” I said.
Grieving there together, Mom promised there would be a party. The guest list would be exclusive: the little sister she followed to America; the son she brought across the Atlantic; the Iranian husband who cracked through her armor; the two boys they made together—all those eccentric pieces that fit just so. I wiped at my face and said how nice that would be. And I told her I wanted to reserve the spot closest to her. She squeezed my hand and said of course.
On the way out, I passed through the kitchen. On the table, prominently displayed, was the October 27, 2014, issue of People magazine, the one with Brittany Maynard on the cover, sporting a Mona Lisa smile and standing confidently beside the headline, “My Decision to Die.”
The next year, California passed its own aid-in-dying law, joining Oregon, Washington, Montana (sort of) and Vermont as the states that offered terminal patients a ceiling to their suffering. It would be nine more months for the California End of Life Option Act to take effect, but its mere existence soothed my mother’s anxiety. At long last, she knew how her story would end. We thought we did, too.Law of disadvantages
Dr. Wayne McKinney is running out of time.
A retired physician with terminal bladder cancer, McKinney lives in an area of Southern California where the hospitals refuse to participate in the state’s aid-in-dying law.
“I’m fighting like hell to get it available locally,” he says. “But I realize that I may not be able to do that before I go.”
As drafted by legislators and signed into law by Gov. Jerry Brown in October 2015, the California End of Life Option Act, or ELO, doesn’t mandate the participation of hospitals or individual physicians.
According to the advocacy nonprofit Compassion & Choices, 498 health care facilities have opted into the law. By my count, there are some 866 hospitals and health care systems scattered through California. On the blacklist, California’s entire portfolio of Catholic-affiliated medical providers, which represents approximately 13 percent of the state’s hospital network, including five Dignity Health hospitals here in Sacramento.
Their lack of participation makes some sense, as faith-based health care operations are notoriously moralistic when it comes to what services they’re willing to provide their patients. That extends to the dying process.
“We’re going to do nothing to hasten a person’s death,” says Lori Dangberg, vice president of the Alliance of Catholic Health Care, which represents the state’s Catholic hospitals. “The proponents of this law have set up a false narrative that you either die in absolute pain and suffering or your only option is assisted suicide.”
Plenty of secular medical providers have taken that view.
“We were opposed to the legislation, but it’s what we call the ’soft oppose,’” said Jan Emerson Shea, of the California Hospital Association, a not-for-profit corporation that lobbies on behalf of nearly 400 hospitals and health systems. “We had members on all sides of the issue.”
That entrenched ambivalence—the law is currently the subject of a lawsuit—has created a patchwork system for desperate patients and families of the terminally ill. It’s especially created problems for communities with concentrated senior populations, says Matt Whitaker, Compassion & Choices’ director in California and Oregon. Whitaker points to the town of Rancho Mirage, where Eisenhower Medical Center has expanded its assisted death prohibition by buying up smaller private practices throughout the Coachella Valley.
“Not only do they have the hospital, but they have 65 clinics in that area that they operate,” he says. By monopolizing health care, Whitaker says, Eisenhower has “effectively cut off access to a whole region of people.”
Dr. McKinney is one of those people. His story drew attention when his Desert Hot Springs newspaper published two of his op-eds last year. The three secular hospitals in his area, including Eisenhower, don’t allow their physicians to comply with the ELO Act. McKinney thinks he knows why.
“They don’t want anyone missing all that chemotherapy and radiation,” he tells SN&R. “I do not want to have to die a painful, agonizing death because of the greed of the hospital CEOs. I should not have to go through it.”
In an emailed statement, Eisenhower’s vice president of medical affairs, Dr. Alan Williamson, echoed the Catholic Alliance’s position.
“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” the statement read. “While physicians may not participate in the Act in any Eisenhower Medical Center facilities, they may provide information and refer patients to other sources. They may participate outside of Eisenhower’s facilities and may prescribe medications privately.”
That compromise has been no help to McKinney. He says there is no list of sympathetic outside doctors for Eisenhower physicians to refer him to. “So how are they going to refer the patient?” he asks. “There’s a lot of bullshit going on.”
Add to that the medical center’s clinic acquisitions, and McKinney has found himself stranded in the desert of Coachella Valley, eclipsed by his area’s death-with-dignity blackout.
McKinney continues to lobby his local hospitals for mercy despite his illness. But time is not on his side.
On hospice care for approximately nine months now, he’s already informed his caregivers of his second- and third-choice options.
“All I’ve authorized them to do is snow me under with pain medication when, you know, the pain really starts in something fierce,” he says. “And then, as a backup, I can simply stop eating. And more than likely would be dead in 10 days to two weeks. That’s my final option.”
It’s certainly not an ideal one, Whitaker notes. “It’s not as gentle and peaceful as medical aid in dying,” he says. “You take medication and you’re asleep in five minutes. And your heart stops beating in like an hour. You’re unconscious and you die in your sleep essentially.”
Even in areas where the law is embraced, however, invisible hurdles put the terminally ill in a cruel race against the clock.
To be eligible for ELO Act consideration, patients can have no more than six months to live—and no fewer than two weeks, Whitaker says. Within that narrow span, patients must navigate formal written applications and two separate diagnostic appointments to reconfirm that they’re actually dying, are of sound mind and can muster the strength to administer the fatal doses when the time comes.
Meanwhile, there’s nothing in the law that says how soon terminal patients must be seen once they’ve requested assisted dying. And with most physicians opting out, a very tight bottleneck exists even at the most sympathetic hospitals.
“All these different things can effectively make it impossible for a person to get through the process if they don’t start early,” Whitaker cautions.
But Whitaker has some good news. Kaiser Permanente, through which my mother is insured, “is really the gold standard when it comes to implementing the law,” he says.
Then why do I have such a bad feeling?The audition
Dr. Suicide wears Toms.
I’m distracted by Greg Naughton’s summery footwear as my dad guides the youthful physician through the foyer. Taking a seat in front of a hibernating fireplace, the earnest doctor gives us a rundown of why he’s here this morning.
In truth, nothing could be clearer in our minds.
It’s October 21, 2016, more than six weeks after my mom asked her oncologist to initiate the end of life process. It took more than a month just to get the paperwork delivered, which Valerie Booker, our end-of-life coordinator at Kaiser, insisted had to be physically mailed despite a downloadable version on the state’s website. After her assistant twice forgot to send the application, Booker drove a copy to my parents’ doorstep.
By then, our mother could barely sign her name.
That wasn’t the only hurdle, either. Initially, we received mixed messages from Kaiser and Snowline Hospice about which entity needed to kick-start the process to the next phase. A week passed. After that was ironed out, our coordinator had to reach out to three different doctors before she found one willing to conduct that first consultation. Each one had three days to respond, letting more sand fall through the glass. And then, when my 95-pound mother could no longer stand, we debated the meaning of “bedridden” with hospital and hospice officials as we tried to get Kaiser to schedule a house call.
Through it all, we received heartfelt apology after apology. But there seemed to be a baffling lack of urgency.
Dad explains this all to Naughton. This is his wife’s last wish. But the red tape has strangled our hopes of her moving to the next round.
“Maybe she’s not able to respond the way you want her to,” Hamid offers hesitantly. “And I didn’t want to take that [choice] away from her.”
It’s “a valid concern,” Naughton acknowledges. Death does not yield for bureaucracy, after all.
Naughton is one of the good guys. The problem is there are so few doctors like him.
I will later ask Kaiser and Sutter Health how many of their terminal patients fall short of their dying wishes due to delays in the process and a lack of participating doctors. The health networks will refuse to answer, referring me to the California Department of Public Health, which tracks the law’s implementation. But the agency doesn’t ask how many patient requests result in denials, a spokesman will tell me.
Maybe the state doesn’t want to know.
“Let’s go over there and see her,” Dad says.
We pad softly into the bedchamber where Ellen sits at the foot of her sister’s bed, keeping a permanent vigil. My younger brother Ali hangs outside the door, unable to watch. Dad bends down and introduces Naughton.
“Do you understand what I’m saying, love?” he prods.
She musters up a haggard “yes.” It plummets like a lead balloon.
Naughton sets his already boyish voice a few octaves higher. “Hi, dear,” he chirps. “My name’s Greg Naughton. I’m one of Kaiser’s doctors. Are you able to talk to me for a few minutes?”
“I don’t know,” she sighs.
“You’re pretty tired.”
“Yes,” she says.
“Do you know why I’m here?”
“Yes,” she answers quickly.
Naughton asks Mom to describe her illness, but the request doesn’t penetrate whatever fog has subsumed her. I try. “What do you think is happening right now?” I say.
“The end of life,” she says.
“OK, good,” I say.
Naughton tags in. “I understand from your family that this is important for you,” he says. “But to move forward with the process, it’s very important that you’re able to talk with me and answer a few questions.”
She slurs a thread of clumped vowels that Naughton can’t assemble. But I can. She says, “Yeah, I want to know what took you so long.”
My dad pleads for simpler questions. Naughton is sympathetic, but the law is not. It requires “meaningful” answers.
Mom whirrs like a skipping record. “I just want to know why—why it took so long,” she groans.
“I’m sorry it took so long,” Naughton says.
“Yeah, me too,” she murmurs.
“And I don’t have a good answer for that,” he says. “But we’re here now.”
Pressing on, Naughton starts his line of questioning at the top. Can she summarize her illness and describe the end-of-life law? She answers fitfully. She gets the year wrong. She says it’s 1969.
He slogs past that one. “Can you tell me what’s happening to your body?” he says.
“It’s starting,” she says.
He asks if she remembers seeing Dr. Sardar. She does. What did he tell her, Naughton asks. There’s a long pause. I wonder if she’s fallen asleep. Then she speaks. Her voice goes high, like she’s done something wrong.
“That I was dying,” she says.
I stroke my mother’s threadbare back. I hate our roles here. We should be protecting my mom from this guy, not helping him interrogate her. She can’t even sit up.
Naughton gives us a transparent look. “I think,” he starts, “I think we’re in the difficult situation where her disease has progressed to the point where she might not qualify for this law.”
Reeling, I try one last time. She doesn’t know this strange doctor or his unfamiliar voice. But she knows me. She knows her son.
“Do you want the end of life pills?” I ask shakily.
“Yeah,” the wisp of a voice says. “I’m in pain.”
“What do you think the end of life pills will do for that pain?”
I stare at her, trying to summon the words. They come unstuck one by one.
“I cannot take it anymore,” she says.
Silence. We sit there listening to her lungs rattle. It’s like she’s operating on backup generators and we’re watching the lights flicker, seeing how long they’ll hum. I caress her arm. It feels like wax paper. Naughton catches our plaintive eyes.
“Maybe we can talk outside the room real fast,” he whispers.
As Naughton steps out into the hall to break the news, I hang back and feel my lips stick to a damp forehead. “OK Mom,” I say, “no more questions.”
“You did good, Mom,” I whisper.
“No more questions?” she asks.
“No more questions.”
She starts to say something else. “I don’t want, I don’t want to go …” The rest crumbles into dust.
Outside, my father’s broken heart comes out in angry shards. He appeals for clemency. But the law is the law. And the governor isn’t taking requests.What to expect when you're expecting
Hours rearrange the night. A pale gray light finds me sunk into a medical bed. The rubbery mattress screeches with every shift I make, so I roll myself off and scan the room. Mom coos like an injured bird under rumpled sheets. Ali is gone. I hear Dad sniffling outside. I find him on a couch in the alcove. I set myself beside him and absently rub his shoulder.
“What are we going to do without her?” he says.
I stare blankly at the front doors, two heavy steel gates the color of coal.
“I don’t know,” I say.
Hamid met Elisabeth when she briefly took a hostess job at the Sacramento restaurant where he was a waiter back in the mid-1970s. Two immigrants from different parts of the world, brought into each other’s orbit by vastly different circumstances. A single mother of a 13-year-old son, Elisabeth had given up on love. But there was something about this man. He was handsome and dark skinned, just as she pictured he would be when she was a girl. But he was also kind and generous and so ebullient. He must have told her his whole life story on that first dinner date.
A few years later, they eloped to Reno. Lis sobbed the whole way. She couldn’t help it. When they exchanged wedding vows in that empty little chapel, Lis placed a paper wedding band around Hamid’s finger. They were so broke back then.
In 1994, after that first bone marrow test, they sat together in the hospital parking lot and cried. They knew it was bad news. Whatever it was, they would face it together.
She called him “Hah-mit.” And because she did, so did everyone else. “My Hah-mit,” she would say.
“Poor girl, she’s suffered so much,” Dad says into the new dawn.
Something is said. Maybe I say it. Dad has a forlorn reply.
“We’re killing your mom,” he weeps into his hands.
I rub his back. “I know,” I say. “We have to.”
A few hours later, the day nurse arrives. A poker-faced young woman, Lydia tells us we’re in the final stretch, but can’t say for how long. Could be hours, could be days. A cold shiver in my guts.
“It won’t be pretty,” she warns.
I ask what we can do to make sure Mom doesn’t suffer like she did the previous night, after Naughton left. Ali and I rushed to the house, bidden by our dad’s SOS text, to find Mom whimpering and moaning. The medications they gave us did nothing. We climbed into bed and asked her to give us the pain, but it was no use.
Lydia tells us to keep dosing her with morphine and diazepam, increasing the frequency as needed. Don’t hold back, she counsels. They didn’t give you enough to kill her anyway.
That’s not what I want to hear.
When I rush into the room a few hours later, Mom has already been carried to the hospital bed by my two brothers. Her head is twisted to the left while spasms rock her matchstick frame. Quick, shallow breaths, strangled through a wetness in her throat. Sights and sounds I can’t forget.
“What do we do?” I ask. The faces that turn toward me are helpless, scared. No one knows. I sink into a folding chair at her side and take her hand. I keep touching her—petting her ballpoint shoulder, smoothing her hollow cheek, laying an upturned palm gently against a shimmering forehead. I wonder if the woman I love is there. I pray she is and she isn’t.
Ali makes a call. Thirty minutes later, a Snowline kid rolls in a moped engine on wheels with a plastic tube attached to it. He instructs us how to use the suction machine like he’s practicing a book report in front of the mirror. He’s either a sociopath or just a young kid who didn’t expect to be officiating some strange family’s medical emergency this Saturday.
After he leaves, Ali cranks the guttural motor and gently works the tube into the hollows of Mom’s cheeks. It makes a terrible sound. Yellow froth whips through the clear plastic straw. But the machine does nothing to alleviate her distress. They told us it would be ugly. But this.
Ali strokes her head, thinking of all the things he wanted to tell her. He planned to put it in a letter, but the fire spread too quickly. “Mom,” he says, barely choking the word out.
Ellen coos to her big sister in German, urging her to go. “Ich komme bald,” she promises. “I’ll come soon.”
I wrap my hands around hers and bow my head against this crucible of fingers. I beg her to go. I beg her to die. I make her a silent promise and wait.
When it finally happens, the stillness that shudders through the room feels sacred, like a thought taking flight. There is a quiet that has nothing to do with sound. Nothing at all.
I plunge my face into her side and howl an ancient song. Strange hands find my back. By the time I come to, Dad is standing opposite me. His hand reaches out tentatively, like a boy who wants to wake a parent after he’s had a bad dream but is afraid to. When his mouth opens, it’s like a levee breaking.
“Lissy, you left me all alone,” he sobs.
Ali shakes his head and rises. “No, no,” he says. “No, you’re not.”
A son goes to his father. I find my legs in this new world more slowly. The gravity is different here, heavier. We huddle together, the three of us, like space rocks orbiting a fading star.
It’s Saturday, October 22, 2016. She was 76. It’s lovely outside.Terminus
The rest of the day fades into a watercolor delirium. A hospice nurse named Susan appears with a black luggage roller in tow. She records the official time of death two hours after my mother’s actual passing.
Death is a house guest that overstays its welcome.
Susan then goes about collecting all the medications Mom barely touched. Ali shows restraint, pocketing one orange bottle with about 15 tablets of lorazepam before leading the woman to the rest of Mom’s supply. No point in letting perfectly good hospice drugs go to waste.
I watch as Susan takes a wet washcloth to my mother’s body. She speaks to her softly, words I cannot hear. This is her job, every day, to enter homes like ours and toil on the periphery of death. She does so with a gentleness that breaks my heart.
Susan tells us that she experienced the same thing with her father. We’re now part of a secret society where the members recognize each other by the thousand-yard stares. Seeing ours, Susan reassures us that death looks worse to the observers than it feels to those going through its jagged door.
Ali and I ache to believe her. Dad is a little better at finding succor in Susan’s words.
“I’m very happy that she went this way. I don’t think she would have ever reached the point that she took those pills,” he says quietly, as if not to wake his wife. “This was on her own time and she did it.”
“Gorgeous woman,” Ali chimes in.
“She always did it the right way,” Dad says.
Some time later, two men in rumpled suits and rumpled faces arrive in a black van. They’re from Simple Traditions Inc., a Carmichael crematorium whose website promotes dignity, affordability and the company’s female ownership. Mom would have approved.
Dad and Ali have many questions for these modern-day ferrymen on the river Styx. I only half-listen as I sit with her, primping the covers to make sure she doesn’t get cold. The one who talks promises to text Ali as soon as they arrive at the crematorium. My brother sucks in sharply as he signs the name his mother gave him to a form releasing her to strangers. And when the men return with the stretcher and body bag, he will drop to his knees.
Unable to stay, I flush into the backyard and point my eyes at the western skyline. I watch an egg yolk sun dip beneath the shingled roofs and ropy fir trees, detonating a final swirl of colors that only gets this vivid right before it all goes dark.
In the weeks that follow, there is much debate over what my mother experienced during those long, final hours. Sometimes I ask her whether she felt it, her death, whether it harmed, and whether I let her down. I don’t get an answer.
This is strange to me. In the simplest sense, I cannot fathom my mother’s nonexistence. It’s a darkly miraculous thing to toss my puny mind at, and so I stumble forward like a broken soldier unable to recall the mission.
I find myself wandering my mother’s closet for smells and fabrics that still hold some keepsake traces of her. It’s as if I’m the one who died, and now I’m haunting the spaces my mother no longer lives in.
I listen over and over again to recordings I made of our breakfasts together, following her terminal diagnosis. She would regale me with stories from a past I wasn’t alive for—her earliest memories, scenes from a destitute, postwar village; the witch who taught her the forest’s secrets; the ghosts she saw; the people she loved and forgave.
“One thing I have to say is, I always had great friends in my life,” she told me one morning, two weeks before she died. “I was a cute girl. People loved me. They’d always say, ’Elisabethchen, come here!’ Yeah, they loved me.”
And later, there was the man she met, the love they made and their own breakfasts, seated at a sun-splashed kitchen table with a slumbering newborn between them. She didn’t think she wanted more children. “But then this feeling just came over me,” she said. “I was so happy.”
I was starting to understand what she meant, I told her. I had this glimmer of a future I don’t yet own, with a daughter as spirited and brave as her grandmother.
Together, we stole time that did not belong to us.
And when I rose to leave, she always offered me more toast and eggs. Because she’s my mom. And she always will be.