I helped my terminally ill mother fulfill her wish to die on her own terms

Even before she was diagnosed with terminal lung cancer, Corinne ‘Teeny’ Zimmermann knew she wanted to be ‘master of her own fate’, writes Tim Zimmermann

Teeny Zimmerman sailing with son Tim (Photos courtesy of the author)

On a Sunday evening in July 2018, my 81-year-old mother raised a small red glass to her lips. In it was a mixture of water, grape juice and 10,000 milligrams of Seconal powder, a massively fatal dose of a barbiturate most commonly used for insomnia. She was sitting up in a hospital bed in her Washington DC home, bathed in warm early evening light and wearing a thin white nightgown. She had spent the weekend calling close friends and loved ones to say goodbye, and chatting and passing time with me, my sister and all her grandchildren. A matriarchal figure, always vocal in her opinions, she took the time to dispense some final grandmotherly advice. “Don’t drink too much in your first year of college.” “Stop worrying so much about applying to college.” “No more tattoos.”

Finally, there was nothing more to say. Surrounded by family, she seemed composed and unafraid, ready to shed the anxiety, pain and humiliations that come with terminal lung cancer. Without the slightest hesitation, she drained the glass and lay back on her pillows. Within a minute, her features softened and her eyes closed. She fell into a heavy sleep, her breath audible. It wasn’t long before her breathing slowed, and then stopped.

According to the DC Department of Health, my mother was one of two DC residents to kill herself last year using the 2016 Death With Dignity Act. (A third, Mary Klein, the law’s most vocal citizen-advocate, also took her own life but for some reason does not show up in the department’s statistics.) The law, which allows terminally ill patients to end their lives with a fatal dose of drugs prescribed by a doctor, puts Washington at the leading edge of humane end-of-life options: only nine states plus the District – and just a handful of countries – allow medical aid in dying.

“I am not a complete libertarian,” says DC council member Mary Cheh, who submitted the Death With Dignity legislation. “But there are certain things you should be able to control for yourself.” The DC law, which was passed by the council by a vote of 11 to 2, does not allow physicians or others to directly administer lethal measures (euthanasia). Instead, it gives mentally competent patients access to end-of-life drugs that they can administer themselves if and when they choose.

I am not a complete libertarian. But there are certain things you should be able to control for yourself

Mary Cheh, DC council member

Simply having the drugs on hand can be a source of comfort for terminally ill patients. Indeed, according to the DC Department of Health, at least two other DC residents filled prescriptions under the law in 2018 but did not choose to use them – and instead died naturally from their cancers.

Those drugs, which freed my mother from the miseries of an incurable disease, proved to be the greatest mercy of her 20-month battle with cancer. Getting them, however, was a journey filled with stress, uncertainty – and unexpected hurdles.

My mother’s given name was Corinne, but I never once in my life heard anyone call her that. She hardly let anyone use Mrs Zimmermann either. To most of the world, including her own kids and grandkids, she was just Teeny, a nickname bestowed on her as a child by older brothers. In turn, she called just about everyone “lovey”, even her plumber.

Teeny Zimmerman with her son, Tim, and daughter, Quinny, in the 1960s (Courtesy)

She was an intelligent and well educated woman, despite never completing college. She married my father in her early twenties; he soon joined the Foreign Service, and my mother, in addition to raising me and my two sisters, spent much of her life as my father’s most trusted collaborator in embassies all over Europe. A gregarious, opinionated, often funny, often infuriating woman, she aimed to make life interesting and fun for herself and everyone around her. She spouted provocative opinions and said outrageous things, just to get dinner conversation flowing. And she was deeply content with her life in and around Washington, where she lived after my father’s retirement from the Foreign Service in the mid-1990s: out constantly with her friends, travelling regularly, enthusiastically cooking and eating foods featuring ludicrous amounts of butter and cream, spoiling her dog and grandchildren and ruthlessly plying her sharp bridge skills anytime a game was offered.

She was also exceedingly practical and impressively unsentimental. As she approached her eighties she had already decided that, when the time came, whatever illness or decrepitude she might confront, she wanted to be master of her fate. She went into detail on this point, and how she might manage it, one evening in 2015 when my nephew, Percy, then a freshman at Georgetown University, brought his new roommate to dinner. It wasn’t at all the sort of dinner conversation the roommate expected or was used to, though Teeny was quite cheerful about the whole thing. Percy was left to try to explain the idiosyncrasies of our family and his grandmother, while the roommate, who turned out to be quite religious, voiced his firm disapproval.

When she was diagnosed with lung cancer in November 2016, I knew instinctively that she would want to be able to kill herself. I lived just four blocks away and was ready to help her deal with the chemotherapy and radiation treatments to come. But before treatment even really began, she started researching how she could pull her own plug, as she liked to put it. Apart from the fact that she had lived a long and interesting life, and had few regrets, she knew what cancer could do. More than a decade earlier she had experienced the agony of watching first my father succumb to pancreatic cancer, and then my younger sister, Lily, die after a long fight with leukaemia – both having endured one failed treatment after another. There was no way she was going to let a disease dictate her fate, or try to hang on day after day while it slowly consumed her. “I want to be remembered as ‘Teeny full of life’, not ‘Teeny the cancer patient’,” she told my sister Quinny.

I want to be remembered as ‘Teeny full of life’, not ‘Teeny the cancer patient’

Corinne ‘Teeny’ Zimmerman

In May 2018, Teeny called me to her house. Over the previous year she had weathered the misery of both chemotherapy and radiation treatment, but had been able to enjoy a quasi-normal life as the cancer had been brought to a temporary standstill. She’d also looked into a number of ways to end her own life – mail-order “veterinary-grade” drugs from Mexico was one option that was rejected – and we’d both discovered that finding a reliable and painless way to put oneself to sleep wasn’t so easy. Now the cancer was growing again, and there was increasing urgency to find an end-of-life solution. As soon as I walked in, she announced, “I have discovered that Washington DC, has a law that will help me kill myself. Please find out about that.”

I was sceptical that a Republican congress would tolerate such a law in the District of Columbia. As usual, however, she was right (though members of congress had indeed tried to overturn it). I read up on the Death With Dignity Act, which had been in effect for more than a year, on the helpful web portal maintained by the DC Department of Health. It seemed pretty straightforward. Her spirits lifted considerably. Mine did too. It is a strange thing to feel relief that your mother has found a way to kill herself, but cancer upends convention. Her problem, we thought, had been solved.

Navigating the Death With Dignity Act isn’t a casual process, and it shouldn’t be. It requires deliberate steps that aim to prevent patients from killing themselves without due consideration or under pressure from anyone else. A patient must be a District resident and in the care of a licensed DC physician and have less than six months to live. The patient must make two oral requests to the physician, separated by at least 15 days, and also submit a written request before the second oral request. A second physician also has to sign off.

By the time she discovered the law, Teeny was unable to breathe well without an oxygen concentrator; she had a racking cough that was difficult to control and made restful sleep, or even easy conversation, impossible. She had always loved food; now, she couldn’t find anything that tasted good and was forced to choke down whatever she could manage, supplemented by protein shakes. She was taking a lot of morphine and was mostly confined to her house. “Teeny full of life” was starting to fade. She immediately set about making the required applications.

Mary Klein, the DC resident who’d championed the law, had trouble finding physicians who would write her a prescription – and in fact, I worried that getting a doctor to agree to prescribe a lethal dose of drugs might be our biggest hurdle. American doctors, by code and by inclination, are not in the business of aiding death. Writing a lethal prescription requires an unusual, nuanced interpretation of the Hippocratic notion of “Do no harm”.

Teeny never considered putting her oncologists at MedStar Georgetown University Hospital – a Catholic institution that does not allow staff to participate in assisted suicides – in an uncomfortable position by trying to enlist their support, or even discussing her plan with them. But her personal doctor, who was not affiliated with the hospital, had known her long enough to understand that this was something she truly wanted. “For her it is the right thing,” he told me and my sister after one office visit in which he had stuck a large needle into Teeny’s thoracic cavity to drain fluid.

When all the required steps were completed, he wrote Teeny a prescription for a lethal dose of secobarbital, or Seconal, a fast-acting barbiturate that can cause respiratory arrest and is considered to be both peaceful and reliable. We were told it would cost about $3,000 (£2,300) to $4,000 out of pocket. There was also a less expensive option, four drugs compounded together, that would cost $400 to $600 (still a significant expense). Out-of-pocket costs for patients can vary state to state, and by insurance plan. But in the District, apparently, dying is expensive. My mother was lucky enough to be able to afford to pay for the comfort Seconal offered, and, for once in her life, she didn’t look for a bargain. She started to relax. She was once again in control. Filling a prescription, after all, was routine.

Teeny and husband Warren on their wedding day in 1959 (Courtesy)

My mother’s doctor sent the Seconal prescription to the Foer’s Pharmacy at Sibley Memorial Hospital, near his office. The pharmacy first warned us that it would be very expensive. We understood, we replied. Next we were told that such a large order of Seconal would have to come from a regional distributor and might take a while. That’s OK, we said. A few days later, we were informed that the distributor didn’t have it in stock. Sensing something was off, I went to the pharmacy myself. “We’re sorry,” I was told. “We don’t feel comfortable filling that prescription.” I returned to Teeny’s house. She was sitting in the comfy red recliner where she now spent most of her time, her fat tabby, Gobi, curled up in her lap. I tried to sound casual and told her we’d have to go elsewhere. She looked worried. I felt nervous.

Next, I went to the Palisades Pharmacy, which Teeny had been using for years (it is now closed). The pharmacist was on a first-name basis with her. He looked grave and said he would have to think about it. I returned a few days later. The pharmacist came out to greet me and explained quietly that local pharmacies had very little guidance on the Death With Dignity Act. “I love your mother,” he said. “But I just can’t do it.” I couldn’t tell if he was declining for fear of potential controversy or because of personal conviction. I wanted to appeal to his humanity, to explain how important this was to Teeny, but something about his pained demeanour told me that would only make the impasse more difficult for both of us.

Just to be thorough, but with a pit in my stomach, I tried the local CVS. The pharmacist looked appalled when I explained the prescription I sought, and said she couldn’t even consider it. Pharmacies, not doctors, it turned out, were the roadblock we faced. I had no idea where to turn next.

When I was 13 and my father was posted to the US Embassy in Moscow, Teeny masterminded an epic scavenger hunt for all my parents’ diplomat and journalist friends. Fuelled by vodka, teams of four had two hours to race around Moscow and collect a list of obscure items: a handkerchief from the British ambassador’s wife, used tickets from the Metro, an elevator ashtray from a state hotel. The exuberant teams returned to our apartment to find a large iced swan nestling an enormous tin of black-market caviar between its wings. It was classic Teeny: lots of fun, a little bit risky and conjured beautifully from a quirky imagination.

Now, I was engaged in a scavenger hunt that really mattered, and I wasn’t finding the one thing she needed most. The disappointment on her face when I reported back from the pharmacies was heartbreaking. All her fears about a lingering death could no longer be suppressed. “Do you think we will get it?” she started to ask me every day, as I hunted in vain for a pharmacy that would fill the prescription. “Mom, I just don’t know,” I would have to reply. I felt utterly useless.

Her frustration deepened as her condition deteriorated. Her cancer was aggressively reasserting control. Even with a constant supply of supplemental oxygen, just a few steps exhausted her. Always fiercely independent, she now required help with everything: bathing, getting to bed, changing clothes. She worked hard to maintain her composure, but she absolutely hated being cared for – by my sister and me, and eventually also by a home health aide who covered the overnight hours. She apologised constantly for disrupting our lives.

In late June, her lungs were so compromised she suddenly felt like she was drowning. Quinny and I were with her in her family room. One minute she seemed fine. The next she was gasping, “Call 911.” She spent a week in the intensive care unit and frequently reminded her doctors and nurses that she was not to be resuscitated or intubated if her body finally gave out. They managed to restore sufficient lung function for her to return home and discussed installing a catheter system in her chest so we could drain fluid from around her lungs ourselves. We took the next obvious step and arranged for home hospice care. She was so despondent, I wondered whether she would have preferred no ambulance had been called. But deciding whether suffocation is preferable to a slow death by cancer is not a choice anyone, especially an 81-year-old woman, should have to contemplate.

In early July, as Teeny lay in the hospital, it had been more than a month since she had completed her Death With Dignity paperwork, and we had been searching in vain for weeks for a pharmacy to fill her Seconal prescription. I was starting to believe that the Death With Dignity Act was just a cruel tease, an admirably progressive and humane idea that didn’t actually work. All the reporting I could find on the law suggested that no one had managed to use it, even though it had been active for more than a year.

In desperation, as pharmacy after pharmacy turned us down, I had called the DC Department of Health. The very kind woman I spoke with assured me prescriptions had indeed been filled under the law. “I’m so relieved to hear that,” I told her. “Can you tell me where?” “I’m sorry,” she replied. “That information is private.” But before we disconnected, she suggested I contact the nonprofit Compassion & Choices, which supports aid-in-dying laws across the country.

It seemed strange that the Department of Health would refer me to a nonprofit so my mother could successfully use the law that the agency itself administered. Yet it turned out to be the correct move. Compassion & Choices maintains a confidential network of doctors who have helped fill end-of-life prescriptions. The organisation contacted a doctor in the District and in July, as Teeny was returning home from the ICU, that doctor identified a pharmacy that had filled a lethal Seconal prescription and would do the same for us: a different Foer’s Pharmacy, this one on K Street NW.

Teeny, increasingly nervous that her lungs might fail again, called the pharmacist, Don Fukuzawa, daily, tracking every step of the order and seeking reassurance that nothing would go wrong. It took 10 days for the drug to arrive. On the day the Seconal was being trucked to DC, she called every hour and could barely contain her doubt when Fukuzawa told her that traffic would delay the delivery to Foer’s until late in the afternoon.

Finally, around 6pm, Fukuzawa called to say he had the Seconal. I drove to his pharmacy and found him alone, staying late so Teeny would not have to wait another day. I told him about all the trouble we had finding a pharmacy that would give us the drug and asked him why he was doing it. He explained that most DC pharmacists were nervous about the law and uncertain about the potential consequences. He said that he believed in it and wanted to help terminally ill patients avoid prolonged pain and suffering. “But I still can’t talk with my own mother about it,” he admitted. He carefully explained the steps involved in taking a fatal dose of Seconal, and showed me how to twist open the caplets and collect the powder inside so it could be mixed with liquid.

I left the pharmacy overwhelmed with gratitude for a compassionate pharmacist with the courage to follow his convictions, but also frustrated that finding him had been like a covert op. In a recent conversation with Michael Foer, a co-owner of the Foer’s chain, I learned that the pharmacist at the Sibley Foer’s should simply have referred me to Fukuzawa when she decided she was uncomfortable filling a lethal prescription. Foer explained that, when the law came out, he and Fukuzawa discussed it and agreed they would fill prescriptions that came from doctors they trusted or that they knew were legitimate. “We tried to educate our pharmacists that this is a law and it is OK,” he said. “But we also let them know that if they were uncomfortable they should turn it over to Don. We didn’t want them to say no.” Foer’s evident regret is moving, and I try not to dwell on the fact that a quick handoff from the Sibley Foer’s to the K Street Foer’s might have spared Teeny weeks of stress and a difficult hospital stay.

Still, all I knew at the time was that I was finally in possession of a white paper pharmacy bag that contained 10,000 milligrams of Seconal in 100 capsules, which was about six times as much as should be needed to bring about death. Both relief and premonition pushed my mind in a satirical direction. Yay, I finally got the drugs to kill my mother, I thought as I got into my car. I knew Teeny would want to see the drugs for herself, so I drove straight to her house. She was dozing in her chair, passing time. I held up the pharmacy bag and shook it. She opened an eye, and a wan smile creased her face. When I told her the insurance company had chipped in for half the cost, and the charge was $1,600 instead of $3,000, we laughed. Presumably, we joked, the number crunchers had correctly calculated that being generous with this particular medication might mean that additional medications, and expensive tests and hospital visits, would never be needed again.

Teeny (second left) spent Christmas 2016 with daughter Quinny (second right) and grandchildren Arthur and Corinne on the Puerto Rican island of Culebra (Courtesy)

We received the prescription on a Friday evening, six long weeks after Teeny had started the paperwork. All her life, my mother had been in a rush, seeking shortcuts in traffic, trying to speed up every Christmas carol (we always obliged; her singing voice was enthusiastic and totally off-key) and acting ludicrously impatiently in restaurants. As I suspected she would, she now rushed for the exit. She was long past ready to take decisive action against confinement, morphine and endless medical interventions. She also had hope – hope that she would be going to see her husband and lost daughter again.

My sister Quinny (down from Boston for the previous two weeks) and I put out the word for all grandchildren to come to Washington. One flew in from Poland. None of us could second-guess her. On that final Sunday, with everyone under strict orders not to be sad, she orchestrated one final celebration: a champagne toast, to give thanks for a life well lived and a death well conceived. “I’m ready,” she eventually said, and picked up the red glass. My sister held her hand as she swallowed it down. My sister’s daughter gently stroked her hair. Just around the corner, my 16-year-old daughter sang Leonard Cohen’s “Hallelujah” for her. And she went to sleep.

After my mother died, my nephew ran into his freshman-year roommate. Recalling their awkward dinner a few years earlier, he told him that Teeny had killed herself. “I knew she would,” the roommate replied. That her certitude was so clear before she was even sick makes me smile. I can understand why many terminally ill patients might not choose to end their lives this way, for religious or other reasons of principle, or simply to spend every last minute possible with their loved ones. What I can’t understand is why anyone would deny this option to those patients who genuinely want it, and don’t want to suffer needlessly.

Certainly, the alternative can be grim. Palliative care promises some measure of comfort but is no guarantee of an easy or painless death. My mother had a very close Irish friend who was also dying of cancer. His only option in a country with severe prohibitions on any assistance in dying was hospice and a prolonged descent into opiates, physical incapacity and pain. During one family visit, his daughter told me, he sat up, looked at everyone gathered and groaned, “This is a torment,” before sinking back into his bed again. Knowing how much his wife and four daughters loved him, I am sure their suffering nearly matched his.

My mother, as far as I can tell, might have been the first DC resident to take her own life under the Death With Dignity Act. (Mary Klein found her peace the following month.) If true, that would make her happy. But I also know that she would wish that no terminal patient would have to endure the uncertainty and delays she encountered, or be unable to afford the expense of the prescription. All her life she was deeply aware of the privileges and advantages she was blessed with and did her best to give back as much as she could: helping resettle Soviet Jews in America; practically adopting two young women who worked in the ambassador’s residence in Yugoslavia as it descended into civil war, and bringing them to the United States to live in her house and go to college; teaching at and supporting a school on the small Puerto Rican island of Culebra. She could be very gruff, but she had a soft heart. For her, making death easier for terminal patients was the obvious and compassionate response to terrible diseases. She knew she wouldn’t be around to fight that fight but considered her death a way of pushing back against the idea that patients have to suffer and endure until their bodies finally give in.

Earlier this autumn, I called Don Fukuzawa to see how aid-in-dying has progressed in the District since Teeny took her life. He told me that he had had requests for prescriptions but that he hadn’t been able to fill any. Bausch Health, the sole manufacturer of Seconal in the United States, stopped making the drug at the end of last year. Bausch hasn’t said why, or if and when it will resume making Seconal, which is the most popular aid-in-dying drug nationwide. I called Bausch Health to see if I could get any information. Lainie Keller, a spokeswoman, left me a voice message: “Unfortunately, given the topic of your article and the fact that it is in regard to an off-label use of our product, I’m not able to provide a comment.”

Fukuzawa told me that he hadn’t been able to procure the four-compound alternative either. Foer’s compounding facility, where the drugs in the alternative formula could be blended together, is in Maryland, where an aid-in-dying bill fell one vote short of passage in the Senate. Fukuzawa had reached out to some DC pharmacies that also compound drugs, which requires special equipment and precise regulatory standards, but they had declined. “Nobody was comfortable doing it,” Fukuzawa explained, adding that their reluctance wasn’t so much discomfort with the Death With Dignity Act but lack of familiarity with the formula and the dosages of the specific drugs involved.

Teeny’s dog Rosey also enjoyed sailing (Courtesy)

David Grube, the national medical director for Compassion & Choices, says that the four-drug compound has been a satisfactory alternative to Seconal and assures me that there is a pharmacy in the District that will prepare it. Compassion & Choices also notes that a compounded prescription can be ordered from a state such as California or Oregon – where pharmacies are more experienced with aid-in-dying prescriptions – and shipped to DC, as long as the out-of-state pharmacy has a DC license. “The compound is not complicated or confusing, and the results are the same,” Grube says. “The person generally just falls asleep and dies quietly within 30-40 minutes.”

Of course, a patient, pharmacist or doctor would still have to reach out to Compassion & Choices to get the contact information through their confidential networks, which is a reflection of the fact that our society still has trouble grappling openly with the idea of assisted death. Ideally, patients seeking to use the law could simply consult a public registry of physicians and pharmacists who choose to help them. That would save patients time, anxiety and potentially unnecessary pain. But we aren’t there yet. “We’re very careful of keeping the information confidential,” Veronica Longstreth, the DC Department of Health programme manager who oversees the Death With Dignity Act, says. “There are still some stigmas.”

Grube explains that the DC Death With Dignity law is simply going through the same problems similar measures in other states have encountered when they first took effect: “I believe that DC has the normal experience. It is a new thing for DC, and pharmacies are not sure. They didn’t really do their homework and get prepared, and when the law becomes active they don’t have a policy. But then it evolves.

It is a new thing for DC, and pharmacies are not sure. They didn’t really do their homework and get prepared, and when the law becomes active they don’t have a policy. But then it evolves

David Grube, national medical director for Compassion & Choices

In other states that have similar new laws, however, terminally ill patients seem to be having an easier time obtaining the drugs. Last year in Colorado, where the End of Life Options Act has been in effect since December 2016, 125 people filled a prescription, a rate of one for roughly every 45,000 residents. That’s more than three times the rate at which prescriptions are being filled in the nation’s capital. Hawaii has a brand-new law, and 2019 is the first year it’s been in effect. If Hawaii continues to fill prescriptions at the same rate it did from January through May, then about 19 of its residents will receive aid-in-dying drugs. That’s a rate of one prescription for every 74,000 residents, about twice the rate in DC.

“As with any programme, there will be challenges,” says Shauna White, the executive director of the DC Board of Pharmacy. “Hopefully, the Seconal will become available soon.” I hope so, too: As long as there are residents of Washington who want to control their deaths but can’t, disease wins. That injustice is something that would put fire in my mother’s heart.

The Death With Dignity law played out imperfectly for Teeny, but I am profoundly grateful that it did, eventually, give her the gift of agency – the thing she cared about most as the end of her life approached.

Her uncle, the journalist Stewart Alsop, died of leukaemia in 1974 and chronicled his approaching death in a book titled Stay of Execution. “A dying man needs to die,” he wrote, “as a sleepy man needs to sleep, and there comes a time when it is wrong, as well as useless, to resist.” This perfectly describes the intensity with which Teeny desired to bring about her own death: one final act of defiance, one final act of free will.

© The Washington Post