Mary De Freze, 81, has heart problems, chronic lung disease and a history of falling. At the end of her life, De Freze said, “I don’t want to be in a lot of pain and I don’t want to be kept alive by machines.” Stonebrook Healthcare Center staff helped her put those wishes on a Physician Orders for Life-Sustaining Treatment form. An effort is underway to create an electronic registry of the forms so emergency responders can quickly access them regardless of where patients are.
Mary De Freze, who has heart problems, chronic lung disease and a history of falling, knows she may not have too many years left. And she’s clear about what she wants — and doesn’t want — at the end of her life.
“I don’t want to be in a lot of pain and I don’t want to be kept alive by machines,” said De Freze, 81.
After a recent fall landed De Freze in Stonebrook Healthcare Center with cracked ribs and a bruised spleen, the staff there helped her put those wishes on paper.
The document they used, Physician Orders for Life-Sustaining Treatment, or POLST, gives patients a choice of how much medical care they want in an emergency.
Prompted by a state law that took effect this year, a coalition of emergency and social service providers is working to create an electronic registry for POLST forms so they will be available to first responders and medical providers when they are needed. The group is starting with a three-year pilot project in San Diego and Contra Costa counties that could serve as a model for a single, statewide registry. Paper-based POLST forms are used across the nation, but electronic registries exist only in a few states, including Oregon, New York and West Virginia.
Many adults have advance directives, which are legal documents that designate a surrogate decision-maker and list patients’ health care preferences. POLST forms go further, creating a set of medical orders that are signed by the provider and the patient or a legally recognized decision-maker. Unlike advance directives, they are specifically designed for people who are already seriously ill or near the end of life.
Research shows that POLST forms help ensure patients’ end-of-life wishes are followed. But that only happens if doctors and other emergency providers can get them quickly. In California, the POLST form is a paper document and might not be at hand when patients need it. In many situations — a heart attack, a stroke or severe dementia — patients may not be able to communicate. And doctors may not be able to reach their families right away.
FOLLOWING WISHES
Without information on what patients want, there is an increased chance their wishes won’t be followed.
“If you take the time to fill out a POLST form, you want your health care wishes to be known and respected,” said Kate O’Malley, a senior program officer at the California Health Care Foundation, which is funding the pilot project in California.
A POLST registry “would be a big plus for being able to give people the care they want and not give them the care they don’t want,” said Jeffrey Klingman, a neurologist at Kaiser Permanente in the East Bay.
“I don’t want to do things to people they don’t want done,” he said. “On the other hand, I don’t want to delay treatment while I wait to figure out what they want done.”
Oregon was the first state to use POLST forms in 1991. California has been using them for nearly 20 years. Filling out the forms is voluntary, but once they are completed and signed, they must be followed, and providers have immunity from criminal prosecution or civil liability when they do so in good faith. The forms are printed on bright pink paper and include decisions such as whether a patient should be resuscitated, admitted to the intensive care unit or have a feeding tube inserted.
Tony Chicotel, a staff attorney at California Advocates for Nursing Home Reform in San Francisco, said patients should document their wishes in advance but that there are some downsides to doing so only with POLST forms. They are not nearly as thorough as advance directives and don’t allow you to designate a decision-maker, he noted. “The most comprehensive health care planning you can do is to name an agent.”
In addition, Chicotel said many nursing home residents are being urged to complete POLST forms even if they aren’t seriously ill or at the end of life. He said if an electronic registry is created, it should also include advance health care directives.
California’s electronic registry would be a secure, cloud-based portal for medical providers to submit and view POLST forms, regardless of whether the patient was at home, in the hospital or at a nursing home.
A ‘NO BRAINER’
An electronic registry is a “no-brainer,” said Judy Thomas, CEO of the Coalition for Compassionate Care of California, which coordinates the state’s POLST program. But implementation will be much harder because it will require the cooperation of state agencies, doctors, emergency personnel, and private and public health systems. Success will also depend in part on hospitals’ willingness to share records.
“We are not asking all health systems to share all information,” said Allen Namath, co-founder of Vynca, the technology vendor for the project. “But the value in these forms is being able to share them.”
Patients who go through the trouble of documenting their medical preferences shouldn’t have to worry about getting the wrong care, he said. “It is not a cardiology problem. It is not a cancer problem. Helping improve our end-of-life care … applies to everybody.”
San Diego County already has a health information exchange that allows hospitals and health systems to share some data. But Contra Costa County is further behind.
“It’s going to be challenging,” said Donald Waters, executive director of the Alameda-Contra Costa Medical Association, which is helping lead the pilot project.
But Waters said it’s worth the effort to overcome the hurdles because having documents uploaded means paramedics and others will know in an instant if patients want to be resuscitated or just kept comfortable.
Situations arise every day in which being able to access POLST forms electronically could improve end-of-life care, said Tom Sugarman, an emergency physician at Sutter Delta Medical Center in Antioch.
“If you come [to the hospital] in full cardiac arrest … we only have one or two minutes to make a decision,” said Sugarman, who educates doctors about POLST. “All physicians are going to err on the side of preserving life.”
Sometimes, however, a patient may prefer comfort care, Sugarman said. A POLST form — if it is available — means families don’t have to make decisions during an emergency, he said. “The worst time to have that conversation is during a crisis.”
FORMS CLOSE BY
At Chaparral House, a nursing home in Berkeley, the POLST forms are in the residents’ folders at the nursing station. The forms go with patients to the hospital, but sometimes there is still a disconnect. Administrator KJ Page recalls one resident getting a feeding tube when he didn’t want one and another who almost underwent bypass surgery against his wishes.
Audrey de Jesus, 83, arrived at Chaparral House just a few months ago. She uses a wheelchair and an oxygen tank. Beside her bed sits a Bible and a book of Psalms.
De Jesus has seven children and said the form tells them exactly what she wants — comfort-focused treatment — so there aren’t any questions in an emergency. “I want pain control and the least suffering for my family,” she said.
Stonebrook Healthcare Center Social Services Director Shirley Jackson said filling out POLST forms is part of the admission process. “It’s almost like a driver’s license for the end of your life,” she said. “It’s important.”
Having the form available electronically would make it much easier for everyone. “If, God forbid, you have to send somebody out in an emergency, especially if they are unresponsive, it’s right there in the chart,” she said.
De Freze, a former certified nursing assistant, said she plans to put her pink form on her refrigerator when she leaves Stonebrook. She knows she could have an emergency and may not be able to tell doctors or paramedics what she wants.
“You can’t communicate if you are in excruciating pain,” she said.
On Wednesday the Rev. Nancy Butler of Riverside Family Church in Hartford died voluntarily. For two years she had been suffering the debilitating effects of ALS even as she continued to pastor the evangelical church she established in 2008 as “theologically open minded, diverse, empowering women and affirming of LGBT people.”
The letter she wrote to her flock last week begins:
I have decided to go off my feeding tube and vent this week and . . . how should I put it . . . die. I knew my suffering would reach this tipping point and caring for me would become impossibly demanding. What I didn’t know was whether or not God would want me to suck it up for some unseen purpose or end my life this way.
I am a little surprised God is confirming this decision. Nice to know He isn’t a sadist. He is oh so tender right now. He tells me my work is done and it’s the right time to come home.
Having a feeding tube removed does not legally count as assisted suicide, but we shouldn’t be fooled by the passive voice. Someone took the tube out, very likely a medical professional. Nancy Butler died of her own will, with assistance.
So did my mother Bernice, who consulted with her internist before deciding to stop eating and drinking six years ago. She was facing a painful death from peritoneal cancer and chose instead to end her life voluntarily. That was not, technically, assisted suicide either.
Assisted suicide is defined as “knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.”
Most Americans have no problem with that, so long as the person is facing a painful terminal disease. Indeed, according to a new study from LifeWay Research, fully two-thirds of them find it morally acceptable.
To be sure, a moral distinction can be drawn between providing a person with a lethal drug and withholding or withdrawing treatment or sustenance. But it’s a distinction without a difference, as far as most are concerned.
The moral issue, it seems, is not how death comes about but whether the terminally ill get to choose. The answer, increasingly, is yes. That goes for 70 percent of American Catholics, whose church has worked hard and with some success to prevent state approval of assisted suicide laws.
“The concept of physician-assisted suicide is a major affront to the teachings of the church,” Michael C. Culhane, executive director of the Connecticut Catholic conference, said last year.
But as a matter of public policy, the argument ought to be prudential. Will terminally ill persons be hustled into the next world without their really wanting to be?
The best empirical evidence we have in the U.S. comes from Oregon, where assisted suicide became legal in 1998. Since then, the annual number of legally sanctioned suicides has risen from 16 to 132, with a doubling since 2010.
That’s under four percent of Oregonians who died last year. Of them, 77 percent were dying of malignant cancers and 9 percent had ALS — as has been the case throughout the history of assisted suicide in the state.
I know that my mother chose what she wanted, and I’m confident that Nancy Butler did too. I’m with most other Americans in not wanting to stand in the way of those terminally ill persons who choose to do the same by way of lethal prescription. I cannot speak for God.
Shelley Duffin and her father reflect on her mother’s passing through assisted suicide which occured in Switzerland due to narrowly being denied the right in Canada.
Sometimes, Shelley Duffin will make a batch of cookies and think, “Okay, I’ve baked.” And then she remembers what a day of baking meant for her mother, Ruth: a few pies, maybe a loaf, muffins, scones, cookies, Chelsea buns with raisins—a mountain of fresh treats piled up when her kids and husband arrived home after her day off. There would be pounds of butter stacked in the freezer like gold bricks, ready for next time.
Ruth was the grandmother down on the floor playing with her grandkids—five granddaughters and a grandson—letting them play dress-up with her clothes or dishing out hands of Go Fish. It was important to her always to look well put-together; setting her hair with a curling iron was a must. It pleased her when people complimented her appearance. But in the last few years, as Parkinson’s disease took hold, if someone said she looked nice, she would joke darkly, “I’d like to bop them, because I don’t feel good.”
Bit by bit, the disease that caused her limbs to bounce with tremor forced her to make accommodations in order to do the things she loved, and then made them impossible. So at exactly the same time as Canadian lawmakers, doctors and citizens were grappling with the Supreme Court decision permitting doctor-assisted death last spring, Ruth decided that she wanted to die. “For many years, I was able to manage as the disease gradually whittled away at the things I held dear,” she wrote in a letter. “I am now at the point, however, where there is nothing I look forward to except an end to my suffering. I have gradually lost all of myself.” But while Ruth, her family and her doctors felt certain that she qualified under the criteria of the Supreme Court decision, the narrower legislation shaped by Parliament appeared to exclude her. And so she, like an untold number of other Canadians, made an excruciating decision to travel to Switzerland to seek assisted death, in the shadow of a new Canadian law that appears to offer little clarity even to the people accessing and enacting it in the most dire circumstances.
Ruth Duffin was a stay-at-home parent when Shelley and her older brothers, Paul and David, were growing up in Dundas, Ont., a town of 11,000 on the edge of Hamilton. Later, she managed the greeting-card section in a drug store until she retired in 2006. The year after she retired, Ruth suffered a transient ischemic attack, or “mini-stroke,” and the tremor began soon after. Her doctor diagnosed her with Parkinson’s disease in 2008, and she was put on a range of medications to try to control her symptoms.
At first, she could fit her life around her illness. She and her husband, Richard, went on several cruises, and closer to home, they loved to play the penny slots at a racetrack in Hamilton or visit Fallsview Casino in Niagara Falls for shows and meals. Ruth timed her baking around tremor-free times of day, then Richard became her devoted sous-chef when she needed more help. Eventually, the baking and outings stopped.
Ruth’s tremors were increasingly difficult to quell even with escalating dosages of medication. “Because she was shaking so much, it was just like a workout,” Richard says. Pain radiated through Ruth’s back and shoulders, and she would become overheated from the exertion. In the early days of her disease, the family called Richard “the Parkinson’s whisperer” because he could hold Ruth’s hand and calm the tremor. But that didn’t work anymore. All the things that had given Ruth pleasure, including their travels, fell away. “After that, she said she couldn’t do it anymore. I said okay,” Richard recalls, gasping back a sob. “She just deteriorated.” Ruth left the house very little and fretted about their three-day Christmas visits to Shelley’s family in Ottawa, each year insisting she couldn’t go again. “This year was the final year,” Shelley says of 2015. “I believed it—I knew there wouldn’t be another.”
A photograph of Shelley Duffin’s mother and father hangs in her home. Shelley and her Father reflect on her mother’s passing through assisted suicide which occured in Switzerland due to narrowly being denied the right in Canada.
Last March break, Shelley took her two young daughters to Dundas. One night after the girls were in bed, Ruth was lying on the couch when she said, “Shelley, this is no way to live.” Shelley replied, “I know it’s not, Mom. Tell me what you want, I’ll do anything.” Ruth said, “There’s nothing you can do.” Not long after that visit, Ruth was seized by a tremor that lasted 11 hours. That pushed things into crisis: after that, each time a tremor began anew, she was consumed by anxiety about how long it would last.
That weekend—Easter weekend—Ruth had her sister over and then her son, Paul, and his wife, and told them she wanted to end her life. She’d long since stopped having phone conversations because they were too difficult, but she spoke to Shelley on Easter Sunday, telling her she loved her and she wanted to die. Shelley was taken aback, but not shocked; she had seen how bad things were. “Do I need to come now?” Shelley recalls asking her father. He assured her nothing was imminent, but two days later, he called in a panic: Ruth was suddenly talking about desperate measures like walking out of the house to step in front of a transport. Shelley got on a train the next morning.
To cope with her feelings of helplessness since her mother’s phone call, Shelley had started researching the current state of doctor-assisted death in Canada. She contacted Dying With Dignity and End of Life Planning Canada, a sister organization that handled advice and support for patients and families. When Shelley arrived in Dundas, she and her parents had a clear-eyed talk about Ruth’s options. Voluntary stopping of eating and drinking (known as VSED) was the only realistic legal option until the law changed, but they agreed that wasn’t palatable: it seemed like a horrible, drawn-out way to die. A few years before, Shelley had done some research on the Dignitas assisted-death organization in Switzerland, thinking it may be a consideration in their future. But when she brought it up now, Ruth wouldn’t hear of the idea—she was concerned about the cost to her family.
And so their entire focus became June 6, when Canadian law would change. Under the parameters of the Supreme Court decision, it seemed certain to them that Ruth would qualify: she was mentally competent, had an irremediable medical condition and was suffering intolerably. They just had to make it to the deadline on the Supreme Court decision, when the law prohibiting assisted death would expire. “We just needed a plan to get to June 6,” Shelley says. They decided Ruth would make an effort each day to go for a walk or just sit in the sun, and they would meanwhile talk to her family doctor and get in place all the necessary approvals so that when the law changed, they were ready.
Before Ruth told her family members, she had discussed her desire to die with Richard several times. It was brutal for him, but he understood: everything that had given shape and joy to her life was gone. “She just suffered so much,” he says. “I tried to look after her the whole time and I just couldn’t do nothing.” The nights were the worst, when the tremor made all but a few hours of sleep impossible and Ruth would beg for another pill hours before her next dose was due.
Over the next month, Ruth was hospitalized twice; doctors first increased her medication to better control her symptoms, then backed off the dosage when she appeared to suffer paranoid delusions as a side effect. When she was discharged, they were given generous homecare, but when a bed came up in a long-term care facility, she would have to take it or lose the in-home help. Ruth abhorred the idea, so they simply hoped a place wouldn’t come up before she could end things on her own terms.
In the meantime, Ruth had a productive conversation with her family doctor. On June 6, the law prohibiting assisted death in Canada expired with the Supreme Court deadline; Parliament was still debating the legislation, so the parameters of the court’s decision applied in the interim. The following day, Ruth formally made her request for assisted death to her family doctor.
But 10 days later, before she and her family could work through all the paperwork, the House of Commons rejected an amendment the Senate had insisted on, which would have made assisted death available to those whose demise wasn’t “reasonably foreseeable,” and sent Bill C-14 back to the Red Chamber. “What the government of Canada has said is: ‘You have a right to medical assistance in dying if you’re suffering from those conditions and have up to a few months to live, but if you’re going to be suffering that way for a few years, we aren’t going to give you that right,’ ” Kelvin Ogilvie, co-chair of the special joint committee on physician-assisted dying argued on the Senate floor. “I submit to you, for all of the arguments we have heard about the importance of the Charter of Rights protecting minorities and the vulnerable, that is the most vulnerable situation that any Canadian could find themselves in.”
The Senate chamber on Parliament Hill in Ottawa on Thursday Jan. 13, 2011.
At work, Shelley listened to audio from the Senate on her computer. As she heard the votes piling up, she kept thinking there must be more senators than she realized, because she was so sure they would stand their ground. But the Senate ceded to the House, and the bill passed. Justice Minister Jody Wilson-Raybould’s office says now that the law “represents the right approach for Canada at this important time in our country’s history,” adding, “The legislation was carefully and deliberately crafted as a cohesive, responsible and balanced regime.” Instantly, Shelley was sure her mother wasn’t eligible. She left her office and went for a walk, sobbing. That night, she called her parents to explain that the window of opportunity had closed. “That was the worst weekend, I think, of our lives,” Shelley recalls. Now, out of necessity, Ruth was willing to consider Switzerland.
The wait for an appointment for assisted death in Switzerland is typically three to four months. Ruth was past desperation, so Shelley moved rapidly, setting up memberships in two organizations, Dignitas and LifeCircle. “I had explained the situation: ‘We don’t have time, my mom is talking about how she wants to step in front of a bus,’ ” she says.
In the meantime, in early July, a bed came up and Ruth moved into a long-term care facility. She needed help to move around or even eat; for the fastidious woman who had curled her hair each day before she left the house, it was too much.
All documentation was sent to the Swiss organizations; Ruth’s membership and request for assisted death were approved, which meant simply waiting for an opening. In late July, Shelley got an email from Ruedi Habegger, a volunteer with LifeCircle. There had been a cancellation and an appointment was available on Aug. 18. Ruth told them to take it. “It wasn’t fast enough,” says Shelley. She booked flights for the three of them immediately (they estimate the trip cost $28,000 in total, including fees from the Swiss organizations). As the days and weeks went by, Ruth would tell Richard, “I’ll never make it,” and asked how much longer. He would tell her the number of days until they left to make it seem shorter or simply say, “You don’t want to know, dear. A few days.”
They had a “hellish” trip that left no time for thinking about the larger reality: that if everything went according to plan, only two of them would make the return trip. Waiting in the lounge for their flight to Zurich, Ruth was seized by a terrible tremor; they dipped napkins in water, trying to cool and calm her. “We were just in constant crisis,” Shelley says. “Because we’d had so many roadblocks, I couldn’t believe any of this was going to happen.” On the flight, they were seated in pod-like business-class seats, making it difficult for Shelley and Richard to help Ruth. She had a moment of muscle rigidity when it was time to exit the plane, and the flight crew had to virtually carry her.
The June 17, 2009 file photo shows a house in Pfaeffikon near Zurich, Switzerland, where the medically assisted suicide organization Dignitas accompanies people, willing to die, into death since July 1, 2009. British conductor Edward Downes (85) and his wife Joan (74) died Friday “peacefully and under circumstances of their own choosing” at the assisted suicide clinic run by the group Dignitas, their family said Tuesday, July 14, 2009.
Habegger picked them up at the airport in Zurich. Ruth was exhausted from the trip and beside herself with the pain and exertion of the tremor. “Driving the car, I had tears in my eyes,” Habegger says. “I’ve never seen somebody suffer so much.” Swiss authorities require approval from two doctors in Switzerland who see the patient, so Habegger drove them directly to the first doctor, in Zurich, and the second came to see them in their hotel room in Basel. Shelley and Richard were worried that something might have gone wrong in adjusting Ruth’s medication to the time difference, and if she suffered side effects, it might look like her competency was in doubt. But Ruth was lucid and eloquent. “I shouldn’t have to travel to Switzerland to achieve this,” Shelley recalls her telling one doctor. “This is just wrong.”
The following day, the anesthesiologist who would be assisting in Ruth’s death called their hotel and said he wanted to meet them. When he arrived, Ruth was laid out flat on the bed, rocked by tremor, demanding help immediately. Shelley was panicked by the awkward, stressful conversation, certain everything was about to fall apart and somehow the third doctor would doubt her mother’s competency, but he took it in stride.
The final night of Ruth’s life, her tremor and the radiating misery it caused kept the three of them up all night. Ruth kept insisting, “I’m not going to make it,” and Shelley kept reminding her that she’d survived months she didn’t think she could endure, and there was just one more night to go.
For outsiders who travel to Switzerland to die, LifeCircle maintains a suite of rooms in the industrial town of Liestal, just south of Basel. Over the half-hour drive with Habegger behind the wheel, Shelley and Richard noticed Ruth’s tremor stilled, and a calm they hadn’t seen in a long time settled over her. “She was finally getting what she wanted,” Shelley says. “I think she felt at peace, because there were so many things that should have set off that tremor.”
When they arrived, it was just the three of them, along with the anesthesiologist and Habegger. First, there was all the official paperwork to fill out, then they moved into the comfortable room where Ruth would die. The anesthesiologist set Ruth up in a bed and put an IV line in her arm, then filmed her answering competency-confirming questions like her name, where she lived, why she had come there and what would happen when she turned a valve on the IV line. “When they laid her on the bed and they put the intravenous in her arm, she seemed to be relaxed,” Richard says. “She knew it wasn’t going to be too long now.” He and his daughter sat with Ruth, holding her hands. They told her what a wonderful wife and mother she was, and that they would miss her terribly but they were here with her. She told Shelley she would miss the kids.
With Habegger recording everything to present to the authorities afterward, the anesthesiologist connected the sodium pentobarbital to the IV line. When Ruth was ready, with Richard holding one hand, Shelley at her shoulder and Habegger laying a hand on her other shoulder, she activated the valve that sent the drug into her veins. In seconds, she relaxed and fell into sleep; within a few minutes, around 10:30 a.m., her breathing slowed and her heart stopped. “She was surrounded by love and calmness,” Shelley says.
At first, Richard and Shelley simply did what they’d been doing all along: they stayed by Ruth’s side. Eventually, the police, coroner and a medical-legal body were called to confirm her death and ensure everything had been done legally. While they waited, Shelley lay down on a couch near her mother’s body and dropped away into the best sleep she’d had in a long time. When she awoke, she made tea for Richard and they waited while the police verified everything; each time he left the room, Richard checked on Ruth. Once everything had been cleared, the anesthesiologist offered to drive them back to Basel. Habegger stayed behind with Ruth’s body to finalize all the legalities.
In the car, Shelley, Richard and the doctor talked about his work with LifeCircle, and he told them it had been helpful for him to see Ruth the night before he helped her die, so he understood her suffering. He stopped at the train station and helped them navigate a German-language machine to order tickets to the airport the next morning. Before they said goodbye, Shelley fetched her mother’s walker from the hotel room; she gave it to the doctor to pass along to Habegger, who was going to find someone who needed it.
Shelley doesn’t carry a smartphone, so it wasn’t until late afternoon back at the hotel that she contacted her brothers to tell them Ruth was gone. She and her father were exhausted; they set an alarm that would wake them to pack their bags, and fell asleep. They had booked a return ticket for Ruth just in case something went wrong. When they woke, Shelley emailed her former sister-in-law, a travel agent, to cancel Ruth’s ticket; there would be nothing to explain to the airline.
When they flew home, Shelley went back to Dundas with her father, then returned to her family in Ottawa the following day. Before she left, she had simply told her daughters, age eight and six, that Grammy was not doing well and she was going to help. When she came home, they asked how she died, and Shelley said she went to a place for people who are ready to die. They haven’t asked any more than that.
There are no current statistics on the number of Canadians like Ruth who have travelled to Switzerland to die. A 2014 study found that between 2008 and 2012, 12 Canadians did so; work is just beginning on an update to that study. Habegger says that in the 18 months before C-14 came into effect, 12 Canadians ended their lives with LifeCircle, which is a small and relatively new organization. Since the Canadian legislation came into effect, five more Canadians have died with the help of the organization, and they expect 20 more over the coming year.
Both the restrictiveness of the Canadian law and the vagueness of the “reasonably foreseeable” language was criticized by senators who resisted including that clause, and by other critics of C-14 who saw it as incompatible with the Supreme Court decision. Wilson-Raybould’s office, however, now says the ambiguity was deliberate to give flexibility to doctors and nurse practitioners assessing patients, and it “does not impose any specific requirements in terms of prognosis or proximity to death.” The justice minister’s office adds, “It therefore extends eligibility both to those with fatal diseases that progress rapidly and linearly, such as those with a prognosis of six months or less, and to those with conditions that deteriorate unpredictably over a longer period of time.”
But that was certainly not clear to Ruth, her family or her doctors. They continued working to get the two required physician approvals in Canada even after the law passed, simply because the wheels were in motion and so many things had already not worked out. Ruth’s family doctor wrote a letter stating that she was “willing to help with her request,” but as the law required a patient’s death to be “imminent” and Ruth was not at that stage, her hands were tied. “This law will be challenged in court over the next period of time,” the doctor wrote. “Unfortunately, at this moment in time, I cannot assist Ruth in this process as I have to act in accordance with the law.” A second doctor interpreted “reasonably foreseeable” differently and gave his opinion that Ruth did qualify. The Duffins couldn’t get an appointment with a third doctor who may have approved her request until September, a month after Ruth finally ended her life in Switzerland.
She didn’t want a funeral or memorial service, and Shelley didn’t want her father having to answer for his wife’s decision, so they simply put an announcement in the paper, directing donations to Dying With Dignity. “I haven’t got any patience any more for people who don’t accept this,” Shelley says of people who question her mother’s choice. “If you don’t agree, that’s fine—just like there are abortion laws you may never use, you don’t have to avail yourself of it. It does not devalue your life that my mom has an opportunity to be able to humanely end hers.”
They’re not people who like to put themselves on public display, she says, but they’ve shared their story because they are so disturbed that other people are suffering who should have an option according to the Supreme Court, but are apparently excluded by the law. “To be crass, if you’re dying, you have an out. Your curtain is falling,” Shelley says. “My 70-year-old mother was looking at these crazy, violent ways she could kill herself. She shouldn’t have been reduced to that. My dad shouldn’t have had her asking him, ‘Just tell me how I can die. Give me the pills. Give me anything.’ ”
Richard asks Shelley sometimes if she misses her mother or if she’s grieving. The way Shelley looks at it, to really feel grief, you have to open yourself up to it, and she hasn’t quite done that yet. She’s still so relieved that there isn’t much room for mourning, but sometimes in moments alone, she’ll chat with her mother.
Richard did a lot of crying on the flight home from Zurich. Since then, he’s washed all of Ruth’s clothes and put them back in her drawers and closet. “I didn’t want her to die, but what can I do? She couldn’t live like that, and I know it’s what she wanted,” he says. “It was no life for her. She lost everything. I miss her.”
About six weeks after she died, he received Ruth’s ashes in the mail from Switzerland; Habegger had offered to bring them next time he visited Canada, but Richard wanted them with him as soon as possible. Next summer, the family will scatter them at Sauble Beach, where they spent a lot of happy days over the years. For now, though, they sit on the dresser. Richard talks to Ruth all the time, the way he used to.
Supporters of “death with dignity” have succeeded in legalizing medical aid-in-dying in five states by convincing voters, lawmakers and courts that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks.
When Gov. Jerry Brown signed California’s law in 2015, he said: “I do not know what I would do if I were dying in prolonged and excruciating pain” and that it would be a “comfort to consider the options afforded by this bill.”
Yet the latest research shows that terminally ill patients who seek out aid-in-dying aren’t primarily concerned about pain. Those who’ve actually used these laws thus far have been far more concerned about controlling the way they exit the world than controlling pain.
The research suggests that patients’ motivations are more complicated than they’re often portrayed and could affect or shape how people vote on the issue in other cities and states.
Colorado voters will decide on a ballot initiative to legalize physician aid-in-dying in November. The city council in Washington, D.C., voted to legalize the practice this month, though a final vote must still be held.
“It’s almost never about pain,” said Lonny Shavelson, a Berkeley, Calif., physician who specializes in the care of the terminally ill and who began writing prescriptions for lethal doses of medication in June, when California’s law took effect. “It’s about dignity and control.”
Pain ranks near the bottom of a list of patients’ concerns in Oregon (PDF) and Washington (PDF), the first two states to legalize physician-assisted dying, which provide the most complete details about people’s motivations. Only 25 percent of the 991 Oregon patients who died after taking lethal prescriptions from 1998 to 2015 were concerned about pain or had inadequate pain control, according to reports filed with the state by their doctors. In Washington, 36 percent of 917 who died were concerned about pain.
In contrast, at least 90 percent of patients in both states were motivated by a loss of autonomy, state records show. Forty-one percent of patients in Oregon and 53 percent in Washington said they feared burdening the people they loved. Montana, Vermont and California also permit aid-in-dying, but haven’t released detailed information about patients’ motivations.
Seeking Control
Compassion & Choices, an advocacy group that supports aid-in-dying, focuses heavily on the need to relieve dying patients of pain.
One of the group’s new ads promotes the District of Columbia’s Death With Dignity Act as giving “a dying person the option to avoid the worst pain and suffering at the end of life.” The widower of Brittany Maynard, a 29-year-old California woman who became the best-known advocate for the right to die, has spoken publicly in support of the legislation. Maynard, who had an aggressive brain tumor, moved to Oregon in 2014 in order to use that state’s aid-in-dying law. She died that year after using a lethal prescription.
“The dying process is what Brittany feared,” said her husband, Dan Diaz. “She was afraid that her final few days on this green earth would be ones where she was tortured by the tumor.”
Mary Klein, a 68-year-old resident of the District who is fighting advanced ovarian cancer, said she wants choices at the end of her life.
“I want to have the option to control my own body and control my own life,” said Klein, a retired journalist and artist who appears in a video supporting legislation to legalize aid-in-dying in the city, created by Compassion & Choices.
Although Klein says she may also enroll in hospice care, which focuses on the needs of people with six months or less to live, she wants to have an alternative if the services don’t meet her needs.
“The dominant reasons for wanting euthanasia or assisted suicide are psychological and involve control factors,” said Ezekiel Emanuel, chair of medical ethics and health policy at the University of Pennsylvania. He noted that most of those who’ve used aid-in-dying laws are white, well-insured and college educated. “These are people who are used to controlling every aspect of their lives, and they want to control this aspect of their lives.”
A study of 56 Oregon patients interested in physician aid-in-dying reached similar conclusions. Although patients were concerned about the risk of future pain, they ranked “current pain” as unimportant, according to the 2009 study in Archives of Internal Medicine (now known as JAMA Internal Medicine). Patients told researchers they were primarily motivated by a desire to “control the circumstances of death and die at home,” as well as a loss of independence, poor quality of life and their inability to care for themselves.
The patients interviewed “look forward to this period in their terminal illness, this time in which they will be not in control, when they will be dependent on others, when they will have a bunch of physical symptoms that will undermine their quality of life, and they want to avoid that,” said Linda Ganzini, a professor of psychiatry and medicine at Oregon Health & Science University.
Critics of aid-in-dying laws have for years warned that they could set the country on a “slippery slope,” in which lethal prescriptions are dispensed not just to the terminally ill, but to anyone with a disease that harms their quality of life. Those fears haven’t come to pass. But physician Ira Byock, who specializes in palliative care, said aid-in-dying laws are creating a slope of another kind. Instead of helping only terminally ill patients in physical pain, they’re being used by patients in psychological distress.
“It’s a bait and switch,” said Byock, executive director and chief medical officer for the Institute for Human Caring of Providence Health and Services, based in Torrance, Calif. “We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.”
Although right-to-die campaigns suggest that excruciating pain is often unavoidable, Byock said that “we can relieve the suffering of almost everyone that we care for if we have the time to prepare.”
Hospice staff are on call 24 hours a day to help patients in pain, Byock said. Palliative care and hospice teams also can train family caregivers how to administer emergency pain medications that take effect before nurses can arrive.
Hospice may have alleviated some patients’ concerns, said physician Thomas Smith, director of palliative medicine at Johns Hopkins Medicine in Baltimore. Just 64 percent of Oregon patients and 82 percent of Washington patients last year actually used the lethal medications they were prescribed. Others died without taking them.
“Many people who have the prescriptions don’t use them,” Smith said. “That suggests to me that some people find meaning and purpose and adequate symptom control, not just that they are too weak to take the pills.”
Many Kinds Of Suffering
Barbara Coombs Lee, president of Compassion & Choices, said it’s difficult for people to predict how they will feel as they face a deadly illness. While a healthy person might not imagine being able to tolerate physical disability, people facing the prospect of an early death are often willing to accept harsh treatments or a reduced quality of life in exchange for more time.
That change in perspective could help explain why some of those who advocate for the right to die, including those who obtain lethal prescriptions, never actually choose to hasten their death, Coombs Lee said. But she said that having the prescription on hand can ease patients’ anxiety and give them peace of mind, because they can control the timing and method of death.
Coombs Lee also notes that people can suffer in many ways beyond physical pain. Maynard’s brain tumor caused her to suffer frequent seizures, for example. Coombs Lee also described the case of a dying woman who took a lethal prescription after she began leaking fecal matter, which prevented her from ever feeling clean.
Coombs Lee quotes the woman, Penny Schleuter, in her book, “Compassion in Dying: Stories of Dignity and Choice.” Schleuter said the pain from her cancer could be controlled. But, she added, “I like doing things for myself, and the idea of having somebody take care of me like I am a little 2-month-old baby is just absolutely repulsive. It’s more painful than any of the pain from the cancer.”
Coombs Lee said, “everyone who is terminally ill has some kind of nightmare that would be worse than death to them. They want to achieve sufficient control to avoid that nightmare for their family.”
Dan Diaz said people shouldn’t underestimate how devastating it can be to lose one’s autonomy.
“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bed sores, I would then submit, is that really living?” Diaz asked.
Some people who pursue physician-assisted death “don’t want to be in a hospital, don’t want to be connected to tubes,” Coombs Lee said. “They say, ‘I want to be at home with those I love. I don’t want to be delirious or unconscious at the end of life.’ Those are all things that play into their fears about what their disease might descend into.”
To fully appreciate the concept of assisted dying among African cultures requires that we decolonise death and dying, writes Sibonginkosi Mazibuko.
In a video released earlier this month, Archbishop Emeritus Desmond Tutu stated that he supports the right of individuals to an assisted death. The writer says the African version of assisted death ensures the individual who lived wickedly is forgiven and can join their ancestors.
Johannesburg – The burning question of euthanasia (assisted dying) has recently been in the spotlight again, but sadly the whole debate appears to ignore other cultural perspectives.
The concept of assisted dying is not really foreign to other cultures. To fully appreciate its essence among the cultures of African people – in South Africa in particular – requires that we decolonise death and dying.
Colonial teachings on death and dying revolve around the concepts of heaven and hell. Heaven and hell represent the Western epistemology of understanding dying and death.
The pain the sick endure is understood through Western thinking while ignoring and undermining other forms of knowledge.
Some African people believe that all dead people join their ancestors. It is believed that dead people are actually not dead. They live in another world where they give guidance to those still living on Earth.
However, access and acceptance in the place of the dead are not automatic. They are dependent upon one’s conduct on Earth. People who behaved in unacceptable ways, especially murderers and witches, are believed to struggle to meet their ancestors and, prior to confessing to their evil deeds, to find dying difficult. It’s submitted that such people suffer grave illness and pain to the extent that they wish for an early death to relieve the pain. Which is where the question of euthanasia comes in. There is a school of thought agitating for the laws of the country to be altered to allow such people to be assisted to reach death.
Their families must make the decision, with the elders calling the meeting to reach consensus. Then the sick can be assisted to die peacefully without euthanasing them at all.
It is also believed in some cultures that people who struggle to die are likely to be murderers and witches. The evil wishes and thoughts we hold for others also qualify us as such. Betraying your brethren to your enemies is an act as wicked as murder and witchcraft. The majority of traitors live with shame all their lives because they are rewarded by the enemy for betraying their own. But the wealth they get to “enjoy” grates on their consciences. They appear to be happy but they are bleeding from shame on the inside for evil acts they find it difficult to confess to. So they live heavily conflicted lives.
Think of a traitor whose hands are bloodied because they sold out their own to the enemy. They live luxuriously at the expense of others. In South Africa, for example, people betrayed the liberation struggle in many ways. They accepted money from those that killed their own. That is why it’s believed the ancestors should be angry with these people.
To be freed from the burden of a heavy conscience requires that the person confesses and sometimes this will involve physical cleansing. Otherwise these people die long and painful deaths. No medicine works until they confess to their evil deeds.
Such people usually have difficulties when they are supposed to die. Some African cultures resolve this by asking the person to confess. During the confession, only the close family is allowed near the dying person to hear their secrets. The dying person may also request that people they wronged be called in so they can apologise to them. If they refuse, they become the guilty ones while the evil-doer departs with a clean conscience.
At another level, the dying person may be required to apologise to the ancestors for actions that may have been unacceptable to the dead. The family slaughter an animal to appease the ancestors and the elders conduct the ceremony and plead for forgiveness of the sick person, requesting that the ancestors allow the person to join them in the after-death world. Usually the sick person does not live another day.
For me, then, such conversations’ with death assist a sick person to die peacefully. There is no poisoning. The dying individual only has to confess to their evil deeds to depart with a clean conscience. Those left behind are required to let go of any wrongdoing the dying person committed in their lives.
In these terms, euthanasia is not necessarily a strange thing. It may be that we only need to embrace our cultures and bring back good practices and beliefs colonialism made us discard. In fact, many African people still practise them.
The African version of assisted death ensures the individual who lived wickedly is forgiven and can join their ancestors. Otherwise it’s believed they become bad spirits wandering on Earth without a place to rest. We call them ghosts.
I practiced family medicine in a small town in Oregon for 35 years, retiring in 2012. I cared for many terminally ill patients, and when Oregon’s Death With Dignity law passed some of my dying patients, albeit rarely, would ask me if I could help them achieve a death that they could control. My experience caring for thousands of patients over the years had taught me that death is not the enemy; suffering is the enemy. Their dignity and suffering were not defined by me, their doctor. I listened to my patients.
Colorado’s Proposition 106 is similar to Oregon’s law (in effect almost 20 years).
The concerns published in the Denver Post editorial have been examined and re-examined and have not occurred in Oregon, and will not occur in Colorado.
In Oregon there is no evidence of abuse of the law, no evidence of a slippery slope and no evidence of the “irreversible door” the Post editorial posits. More people do not die in Oregon, but fewer people suffer.
Aid in dying is patient-driven and patient-centered. “Professionalism” means putting the patient first. Medical aid in dying is not suicide, as your editorial inappropriately described it. Someone who commits suicide has, by definition, a mental illness and is “disconnected.” As a doctor, our job is to refer those patients to an appropriate mental health care provider, as we would for any patient with similar symptoms.
A person in the process of dying wants to live but will not. She or he is “connected”; to family, hospice and the medical system which includes doctors, nurses, family therapists, music therapists and others.
Medical aid in dying is a voluntary process. No one who does not agree with it needs to participate, and in fact it has enhanced end-of-life care, palliative care, and hospice care in Oregon, something that all Coloradans should support. I am proud that I live and practiced in Oregon, and that I was able to help my dying patients achieve a compassionate and desired end to their own stories. Proposition 106 should be approved by Colorado citizens.
David R. Grube, M.D., is national medical director for Compassion and Choices in Oregon.
Dr. Gerald Ashe has assisted in four deaths since Canada’s new law passed.
Dr. Gerald Ashe has seen the kinds of things people do if they can’t get help in dying.
A couple of his patients have taken their own lives. Some have told him they are hoarding sleeping pills “just in case.” He says he has seen too many cases of terminal delirium, a condition where an agitated and confused dying patient survives through five to seven days. The patient will die, it’s just a matter of how long it will take.
“It’s common and it’s nasty and it requires palliative sedation. If given the choice, most people would say: ‘I’ll take the five- to 10-minute plan, not the seven-day plan.’”
Ashe has been a family physician for almost 40 years. He offers palliative care in Brockville and is a member of the physicans’ advisory council at Dying With Dignity Canada. He says his support for assisted dying came as the result of many years of “watching people die, helping people to die and watching them suffer and coming to the realization that we can’t relieve all suffering.”
Since assisted dying legislation passed on June 17, Ashe has assisted in the deaths of four patients, and another patient has permission. “They’re content to know they have permission.”
When a patient dies, it’s a “sacred moment,” he says.
“None of us really want our patients to do this. We understand it. We honour their request and their autonomy. We would prefer to provide relief in another way. I have a contract with a patient. I am with you until you die. I am not going to send you off when things get tough.”
Physicians still feel ambivalent about helping patients die. At the Brockville General Hospital, where Ashe works, a survey of the medical staff found about three-quarters agreed or strongly agreed that people should have a right to assisted death, and almost two-thirds felt it should be offered at the hospital. But only 30 per cent pf physicians would be willing to provide assisted death — with proper training — while 43 per cent would not, with the remainder neutral. About three-quarters said they would refer patients, while 13 per cent said they would not refer. The remaining respondents were neutral.
Ashe believes that only a small subset of people will seek assisted dying. In Oregon, laws permit qualified terminally ill adults to request a prescription for a medication to hasten death. With a population of four million people, about 150 permissions for physician-assisted suicide are sought every year in Oregon. Interestingly, only two-thirds of those who request the prescriptiom actually take it.
“Knowledge is empowering. People won’t make that decision because it is available,” says Ashe. “They will choose it because that’s what they want.”
He was nervous at first about going public with his support for assisted dying. In December 2014, he spoke out after a terminal cancer patient in his care shot himself. This summer, he spoke about helping an ALS patient die at home. But feedback from family and colleagues has been gratifying, he says.
“To live through this era and see this come to fruition has been an amazing experience. That we can allow someone to die peacefully, painlessly, speaks volumes abut how far we have come as a society and as a profession.”
Ashe believes the current legislation doesn’t go far enough. He would like to see other patients have access, including people with severe mental illness and competent children. People with mental health problems suffer terribly and Ashe said he can see no reason why they shouldn’t qualify. People over the age of 18 qualify, but not those who are 17. That’s arbitrary, he argues.
“The beauty of dying where and when you want and with whom is pretty amazing,” he says. “One of the reasons why I have been advocating for this isn’t altruistic. I would like to live in a world where this is possible for myself.”
