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.
Advance care planning is becoming more popular among patients.
By Kay Manning
[W]hen the concept of paying doctors to help patients plan for end-of-life care first came up as part of health reform, opponents thumped it as a step toward “death panels” and “pulling the plug on grandma.”
Advance care planning was scuttled then, but seven years later, it has been rather quietly incorporated into services reimbursable by Medicare. Patients now can seek guidance from their physicians and other health care professionals about what they want and don’t want in terms of life-sustaining or life-prolonging care and have it included in their medical records.
But codifying what many describe as a sea change in thinking may have come about too quietly. The Centers for Medicare and Medicaid Services, known as CMS, can’t say how many physicians have billed for these conversations since the provision took effect Jan. 1, but a poll released in April showed only about 14 percent of doctors who regularly treat patients over 65 have submitted such bills to Medicare.
While that indicates physicians either don’t know about ACP or are hesitant to engage in such conversations, said Angela Hult, executive director of Oregon-based Cambia Health Foundation, one of three poll sponsors, the public is very solidly in favor.
The California Health Care Foundation, another sponsor, found in a 2012 survey that 80 percent of respondents said it would be important to talk to doctors about their final wishes if they were seriously ill, and 60 percent said it was “extremely important” that their families not be burdened by tough decisions, like stopping nutrition or breathing assistance.
ACP, also called end-of-life directives, is gaining steam among nonprofits, foundations and academic institutions focusing on patient-centered care that also can help health systems be more efficient and save money. Books such as best-seller “Being Mortal” by Massachusetts surgeon Atul Gawande, and “Hope for a Cool Pillow” by Illinois anesthesiologist Margaret Overton use personal experiences to advocate for change in health care of the elderly and raise the profile of what all families eventually face but few typically talk about before a crisis.
Planning ahead instead of guessing what a loved one would want, which can cause emotional rifts in a family even as time is of the essence, serves both patient and caregivers. A 40-year nurse, commenting in a blog post about the absence of ACP wrote: “It has been the cause of severe moral distress among my nurse colleagues in the ICU and the source of many personal nightmares over the years. It is so very frightening to think what we do to the elderly, in particular,” by mustering medical technology to prolong life when that might not be desired.
Physicians even have a term for it — the luge ride, said Michael Preodor, a palliative care doctor at Advocate Lutheran General Hospital in Park Ridge.
“It’s more surgery, more disease intervention, without fixing the problem,” Preodor said. “The key to helping is to align our care with what the patient desires, and that’s dependent upon having these conversations.”
He recently had a patient with a sudden spinal injury and infection that a number of specialists gave opinions on how to treat, overwhelming his wife. She wanted the advice of her trusted family physician and because of the ACP reimbursement, she was able to have several conversations about what to do, deciding on comfort care in hospice, Preodor said.
“I have no doubt he’d be in the ICU, having surgery or other interventions with more and more suffering regardless of the outcome,” Preodor said. “Now there’s time for closure, time with family free of pain, time to deal with dying, which we don’t do very well in this country.”
Gundersen Health System in La Crosse, Wis., has been working more than 20 years to change that. Bud Hammes, an ethicist who started the Respecting Choices program that is cited by many as a model for advance care planning, said more than 96 percent of the 120,000 people in La Crosse County have plans in place before death on how they want to be treated as their health declines. Talking about death is a part of community conversation and happens in clinics, hospices and nursing homes, guided by specially trained personnel, he said.
“Patients have plans that go from very aggressive treatment to comfort care,” Hammes said, eliminating what he called the “terrible dilemma” of families trying to do the right thing but not knowing their loved one’s wishes. “They come to the self-realization of why they need to do this very challenging activity.”
The focus on ACP also has saved Gundersen money. The number of days a patient spent in the hospital in the last two years of life was a national average of 20.3 in 2010, but only 9.7 at Gundersen, according to The Dartmouth Atlas of Health Care, and the total cost of care in those two years was a national average of $79,337, but just $48,771 at Gundersen.
Hammes sees Medicare’s approval of ACP as a “positive step forward that indicates a policy shift from when no one talked about this.” Physicians can bill for 30 minutes of conversation about advance directives with patients, family members or surrogates and be reimbursed $86, which drops to $75 for a second such conversation. CMS has yet to promulgate guidelines for the conversations but has stipulated that while physicians must “meaningfully contribute” to them, other professionals such as RNs and physicians’ assistants can conduct them. And starting in 2017, ACP can be part of an annual Medicare wellness visit.
Ironically, while Hammes supports Medicare’s move to reimbursement and is working with others on ACP training, physicians in the Gundersen system will not seek to be paid for these conversations because of internal billing issues and what they perceive as too little time allowed given the complexities of the issues, he said.
Other possible impediments to full participation by physicians across the country include lack of preparation and clarity on what constitutes an ACP conversation, said Dr. David Longnecker, who co-chairs a committee with the nonprofit National Quality Forum to improve advanced illness care. He suggests simulations, such as are used for training in other parts of medicine, to ease doctors’ discomfort with the topic, community input to adjust for faith and culture concerns, and adoption of ACP by health systems instead of just individual doctors.
“The enemy of good is perfect,” Longnecker said. “We have to start somewhere.
“We don’t want ‘yes, doctor,’ but partnerships (between patient and physician), which are essential to delivering a high quality of care,” he said.
Cambia Health Foundation is building on its poll results with nationwide focus groups “as a deeper dive into what are the barriers to ACP, how do we educate and engage physicians, what tools do they need to have these conversations,” Hult said.
“The conversations are so important for end of life, but also for chronic or life-limiting illnesses. How do we ensure that each person receives what they perceive as quality of life?” she said. “It makes all the difference in approach once you understand the patient is the center of care.”
The Conversation Stopper poll showed 75 percent of 736 physicians surveyed in 50 states believe they are responsible for initiating ACP talks. But if they don’t, a nonprofit, The Conversation Project, offers tips on how patients and family members can broach the subject, decide what they want to accomplish and ensure their plan is followed.
The Conversation Project, co-founded by author Ellen Goodman, implores people not to wait until there’s a crisis.
“It always seems too early … until it’s too late,” say its guidelines, which also suggest: Tell your physician you want to talk about end-of-life wishes. Share any experiences that are shaping your thinking. Ask questions about medical problems, such as ‘what is my life likely to look like six months from now, one year from now, five years from now?’ Probe options for care and how they may affect your independence, and ask what you can expect if you do nothing. Request that your wishes be documented and included in your medical record.
Overton, whose book “Hope for a Cool Pillow” is named after the simple but caring gesture of flipping a pillow for patients, grew up in a family where death and dying were discussed, she said, so she didn’t realize it wasn’t common until she became an anesthesiologist.
“I just want to get people talking, to take the fear out of it,” said Overton, who works at Advocate Lutheran General Hospital. “Having a conversation when you’re not stressed … have a coffee, a lemonade, a glass of wine … those are ideal times.
“Typically, doctors don’t know you as well as your family, your values, what you want. When family is part of the decision or knows what the individual wants, there is an element of empowerment. If people are clear about what they want, it’s hard to override that, and physicians are more likely to get on board,” she said.
On July 14, 2014, my husband David and I sat down with our children to disseminate and discuss our health care advanced directives. It was David’s 69th birthday; he died about 2 months before his 70th.
David had endured several years of ill health, culminating in the removal of a kidney. In June, the month prior, we learned that the cancer had metastasized to his bones. As a couple, we wanted to make sure that all of the children understood our desires for end-of-life care. Thankfully we had had the foresight to discuss a broad variety of medical treatment options dispassionately, years before there was any urgent medical necessity. Suddenly those decisions became radically more real.
For 10 months, David endured two different rounds of chemotherapy, neither of which had the desired effect of stopping the cancer that was destroying his bones and causing unimaginable pain. He persevered through the agony of trying to move while his bones were crumbling. Radiation impacted his ability to swallow and to enjoy food, which became a non-option when he had a feeding tube inserted. We watched him fight and waste away, fight and waste away, yet always with the hope that one more treatment would be successful where others had failed.
We had talked about nutrition and hydration at the end of life, about ventilators and surgical intervention in the face of terminal illness, but we had not addressed the fundamental question that The Conversation Project urges us to consider: “What matters to you most at the end of life?”
Dr. Atul Gawande, author of “Being Mortal: Medicine and What Matters in the End” and a leading thinker about the role of the medical profession in caring for patients whose time is limited, reminds us that people have a broad variety of concerns besides prolonging their lives.
Doctors are trained to view death as the enemy and to battle on until the end. At some point, the battle was lost. Among David’s final words were, “Why didn’t he (the doctor) tell me it was so bad?”
Gawande writes that, while there is nothing wrong with sustaining hope, it is problematic if it prevents us from preparing for the more likely outcome.
He writes, “We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
The Conversation Project is an important first step in considering what we each might value most if we have the luxury of knowing that our time is limited. What would be a good enough day to want to go on, and what is the tipping point where we would be ready to let go? The answer will be different for each of us, and we must have the conversation now.
David felt loved until the very end; he enjoyed the best possible support from friends, family and community. And, I wish that we had had more time to lay down our swords, to cease the raging battle, and to have quietly enjoyed more the time with which we were blessed.
Our culture is changing and growing and learning. The Deutsch Family Shalom Center at Temple Chai recently hosted more than 100 individuals who courageously undertook the first steps to have “the conversation.”
At 10:30 a.m. on Sunday, Jan. 8, we will gather to share our experiences and address other concerns as we move forward in these challenging and uncharted waters. Attendance at the first gathering is not required.
What a gift to our family and loved ones to ensure that our financial affairs are in order, our burial arrangements are understood, and to have articulated our answer to that question, “What matters to me at the end of life is…”
[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.
In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.
This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.
In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.
Local hospitals are extremely under-resourced
My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.
In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.
That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.
The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.
The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.
Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.
Providing palliative care at home means patients can remain in their community
It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.
These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.
There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.
Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.
Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.His family wait outside his hut
Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.
Ndi Moyo grows herbs as an affordable way to help their patients:
Lemon grass helps patients excrete toxins
Aloe is a good balm for wounds and acts as a useful laxative
Artemisia has powerful immunity-boosting properties
Papaya sap is useful as an antiseptic
Vinca rosa lowers the white blood cell count
Source: Ndi Moyo
Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.
I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.
Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.
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.
“Did you know that your patient in 1152 just passed away?”
Krishna Constantino
[E]veryone at the nursing station turned silent and looked at the nurse who had delivered the news. I looked at her in disbelief, my brain struggling through a fog of confusion and surprise. I squinted at my patient list trying to remember who was the patient in 1152. Recognition finally hit and I remembered the little old lady that we saw during rounds two hours ago. I remembered gazing at her frail, tiny body and her pale, listless face and how we tried to communicate with her to no avail. We knew she had a Do Not Resuscitate (DNR) status and we knew she was really sick, but we had no idea it would happen so quickly!
Since there was no response from either me or the intern that I was following, she mumbled a hasty, “I’ll go call the family,” and left. I looked at my intern for guidance and I saw that he was staring at the floor, hands resting on top of his knees. It was a surprise for me to see him like this, far removed from his usual confident manner. Death had completely floored us both.
Doctors and other medical professionals have a more frequent and intense contact with death and dying compared to the rest of society creating a need for end-of-life care in medical curricula. However, multiple studies on medical students’ reaction to death show that most medical students feel inadequately prepared by their undergraduate medical curricula for experiences related to end-of-life situations. Death is introduced early in our medical training inside the gross anatomy lab. The absence of any identifying features made those hours spent in anatomy lab easier. Death takes its toll and what is left is an empty husk where a person used to exist. After anatomy lab however, there is very little exposure to the idea of death and dying. A survey of medical students from Duke University showed that the average medical student had experienced fewer than five patient deaths prior to graduation. In addition, few students experienced how to declare a patient dead and none received any formal training on this end-of-life skill.
I, on the other hand was not destined to be part of that statistic. After what seemed like an eternity, my intern rose up from his seat and dashed to another part of the hospital to seek out his senior. After discussing the turn of events and the necessary course of action, our little group convened in front of the door of the patient’s room where I received my first education on the procedure of declaring a patient death.
I lingered close to the door with a bit of trepidation. She was laying in the same position that I had last seen her two hours ago — face to the window, eyes closed. Her mouth was slightly open and for a moment, I merely thought that she was asleep.
“First, we need to check for reflexes. In here, we use two: the corneal reflex and the gag reflex.”
I watched in silence as both the resident and the intern performed these tests — all without a response. I watched as they both tried to feel a pulse. I watched with bated breath against all hope that there was still life ebbing underneath those veins. I let it out, deflated when both of them shook their head no.
As soon as we walked out of the room, I overheard my intern echo the exact same thought in my head. “Do you think we did anything wrong?” A hundred what-ifs welled up inside me. Was there truly anything we could have done to prevent this death? Modern medicine views death as something that can be resisted, if not avoided. This view of death is further compounded upon by modern society’s view of death which delegates all responsibility to physicians. While it is widely accepted that death is inevitable, it is the physician’s task to ensure that the patient is as far removed from death as possible. As Rudyard Kipling in his address to the medical school of Middlesex Hospital stated, “Death as the senior practitioner, is always bound to win in the long run, but we patients, console ourselves with the idea that it will be your business to make the best terms you can with Death on our behalf; to see how his attacks can best be delayed or diverted.” Little wonder that throughout medical education, death is continually seen as a failure.
Although medical schools are now integrating end-of-life care in its curricula, medical education should also engage students in a frank discussion of death and dying. Only by facing death head-on do we dissipate its power over us. The fear of the unknown has always been part of death’s icy grip over us but what if we learned to “disarm him of his novelty and strangeness, to converse and be familiar with him” as Michel de Montaigne recommended many centuries ago when death was commonplace and lifespans were short. Had I chosen to avoid that room, I would have missed out on one of the most important lessons in my medical education.
Each one of us has ideas surrounding death. I have always imagined death to be more dramatic than what I had experienced. In my mind, I keep seeing an entire healthcare team running back and forth — all working together to snatch the patient away from the jaws of death. However, my patient simply slipped away quietly, almost underhandedly. The way that she passed away seemed natural — as if she were merely falling into an eternal sleep. Gone was the drama, the action, the struggle for life. In its place was peace and acceptance of the inevitable.
This in turn gave me reason to think that perhaps, death is not a failure of medicine but rather a crucial part of being alive. Oftentimes, the best lesson in learning how to live is learning how to die as we see in the works produced by the likes of Oliver Sacks and more recently, Paul Kalanathi. As surgeon and Yale professor Sherwin Nuland wrote, “We die, in turn so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.”
[N]othing could evoke more gut-wrenching melancholy than Syrian musician Adnan Baraké playing the oud in a dimly lit boat shed at a festival of death. At least, that’s what I’m thinking right up until the moment a foghorn bellows ominously from some distant ocean liner, swamping us entirely in a sombre aura of doom.
It’s the opening ceremony at the inaugural Sydney Festival of Death and Dying – and it’s only going to get more macabre.
Held this past weekend, the festival was billed as three days of workshops, lectures, and performances that “do justice to the full spectrum of what is at stake in mortality”. Presented by Dr Peter Banki, he has compiled a line-up of peers such as anti-death-phobia advocate Stephen Jenkinson, designer of posthumous fashion Pia Interlandi, and president of Dying with Dignity NSW, Dr Sarah Edelman.
Together, they aim to illuminate all angles of death and dying: living with grief, dying at home, the afterlife, visions, suicide, and voluntary assisted dying, among others.
Nobody close to me has died, and my “death literacy” is lacking – I have a lot to gain from a weekend like this. In curatorial advisor Victoria Spence’s terms, I’m here to “build muscles in relation to mortality”.
Death is and perhaps always will be taboo, but it’s something we need a lot of help preparing for. Before we become a parent, we have months to get ready: we read books, we go to classes, we shop, we see a counsellor. When someone dies though, it’s often unexpected – but there are ways we can make the process easier, and they usually begin with a conversation. Or in this case, a festival.
Victoria Spence is a civil celebrant, consultant and former thespian. She begins her session – Developing Your Mortality Muscle – by explaining her objectives: to help us be aware of, and understand, our physiological responses to loss.
Death may cause us to fight, flee, freeze or submit, she says, but one response is pretty much guaranteed: shock. We react to death by abruptly drawing in breath; and in the rituals that surround death, we metaphorically hold it in. But if we’re prepared, if we learn to breathe, we can be properly present.
“When somebody dies, you put the kettle on,” she says. “That’s how you be with your dead.”
Having physical proximity with the deceased – being privy to their new smells, witnessing physical changes – activates a physiological response, changing the way we view our dead and encouraging the grieving process.
The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.
Victoria says being physically intimate with death can be crucial: bathing your dead person, or clothing them. Another way to be intimate is through language. We sit in groups to exercise our vocabulary of condolence: “I’m sorry”, “You’ll get through this”, “You will heal in time” – my phrases seem to avoid the moment, while others engage with it: “How does her death make you feel?”
Next we’re given the chance to get up close and personal with the accoutrements of death. I slink into a satin-lined coffin, and as the lid is repositioned I imagine the sound of dirt raining down on me. This experience builds no bridge to death, the same way being wrapped in toilet paper for Halloween brings me no closer to the experience of mummification. But it does make me wonder about alternative burial rites.
In another session, Dr Sebastian Job creates a simulation where participants “face the worst” ahead of time. By inflating a balloon until it bursts we experience a symbolic death, he says, allowing us the opportunity to process death anxiety and life regret. He hopes this jolts us from social paralysis into affirmative action.
Have you ever thought about what song you want played at your deathbed? Peter Roberts is a music thanatologist; he plays music for people who are at the end of their life. In this session he discusses how music can help dying people to let go – and several have during his service.
Tempo tempers breathing, and tone and timbre can quell fear, he explains; his use of vowel sounds, not words, can offer uncomplicated companionship, and provide the dying an opportunity to abandon their pain-riddled bodies and follow with their mind, travelling peacefully with the harp’s melody.
Palliative care physician Dr Michael Barbato has devoted a significant part of his life to the exploration of dreams and visions at the end of life. He believes that we overlook the mystic elements of death and dying simply because they appear too “fringy”.
He quotes a study that found up to 50% of respondents believed their dying loved one was experiencing unusual visions. The study quoted was his own – the Palliative Medical Journal refused to publish it because, he says, it was too fringy. His talk is entertaining and peppered with emotive stories, but it lacks the scientific substance I require to get into the moment.
Dr Peter Banki, the festival director, believes proximity to death can make us feel alive. He says we often use words such as pain, fear and submission when describing death. One of his workshops, Thresholds and Lust, is an intersection of both his festivals – this Festival of Death and Dying, and his prior Festival of Really Good Sex. It is designed to playfully evoke death-related emotions from willing participants.
A bondage hood is placed on my head, suffocating my senses. My partner manipulates my head and body, she runs her hands over my arms and head (submission). I can’t help but wonder what everyone else around me is doing – are they watching (fear)? The heat bakes my gimp head like a potato jacket, while my body is uncomfortably contorted on the pungent floorboards (pain). I tap out.
I’m not yet ready to yield to the vagaries of dying, whether real or imagined, by the festival’s end – but I do notice I’ve begun cultivating a relationship with death that I’m thankful for. Perhaps more importantly, I’ve also observed friendships forming, information exchanged, and future plans being made – the festival of death has facilitated the birth of a community. We are all dying, after all.
