[F]or many of us, grief from the loss of loved ones can be stronger than ever during the holidays. Hospice by the Bay is here to provide support. The need is great, so we are looking for additional professionals to join our bereavement team.
I hope that my story will inspire others.
For the past few years, I’ve been a member of Hospice by the Bay’s bereavement team. I haven’t always done this kind of work; I used to own a bookkeeping company and had also been a human resources director. People often ask me, “What prompted you to make the change?” “How are you able to do such heart-wrenching work?”
Like many who work in hospice, I have experienced profound loss, in particular the death of my father. Losing him was painful but also life-changing. Before, I had been afraid of death and dying — but something “switched” when I was with him while he was dying; I realized that being with someone at this time is a gift.
I can’t say that I handled my grief very well. I moved too fast and was also grieving the “empty nest” after my daughter left for college.
Ultimately, I sought help, and soon realized that it had been a long time since I had been involved in work that came from my heart.
So I went back to school for my graduate degree in psychology with a vague idea to work in the drug treatment field. But one day it came to me, really as a calling: I wanted to do hospice work.
After completing internships in inpatient hospices, I felt a need to round out my work by helping families and individuals who were grieving. I completed Hospice by the Bay’s Bereavement Internship Program and became a licensed marriage and family therapist.
Today, I work with Hospice by the Bay as a community grief counselor, providing crisis and ongoing counseling to individuals and groups as well as grief education to schools, workplaces and organizations in need. All of these services are available to anyone, whether or not their loved one was our patient.
I get a lot out of my work. Rather than becoming depressed or detached (as some might think), it is uplifting. I get to be a “holder of hope” as I meet people at a critical time of their lives — when they are vulnerable, in pain, and may be all alone with their grief.
No matter how emotional the work is, at the end of the day, it is rewarding to know that I am guiding people when they are rudderless and adrift in an ocean of grief. It is an honor. This work has a positive impact on my personal, day-to-day life as well.
I appreciate life more, because I know that it is short. I make more meaningful choices, treasure “the moments,” and experience an expanded capacity for love.
Bereavement work is not for everyone, but it’s a calling for others.
Hospice by the Bay invites qualified candidates to apply for our Bereavement Internship Program. A part-time and yearlong paid program, it offers highly professional training and supervision.
Candidates must have a master’s degree in mental health, counseling, psychology or social work, and be registered as an intern with the Board of Behavioral Sciences.
If you or someone you know is drawn to this type of work, is mature of heart, respectful, and in search of a meaningful placement, please contact Hospice by the Bay at sohri@hbtb.org.
For the right person, helping others through their grief can be one of the most rewarding experiences you will ever have. It has been for me.
In one of the largest and most rigorous clinical investigations of psychedelic drugs to date, researchers at Johns Hopkins University and New York University have found that a single dose of psilocybin—the psychoactive compound in “magic” mushrooms—substantially diminished depression and anxiety in patients with advanced cancer.
Psychedelics were the subject of a flurry of serious medical research in the 1960s, when many scientists believed some of the mind-bending compounds held tremendous therapeutic promise for treating a number of conditions including severe mental health problems and alcohol addiction. But flamboyant Harvard psychology professor Timothy Leary—one of the top scientists involved—started aggressively promoting LSD as a consciousness expansion tool for the masses, and the youth counterculture movement answered the call in a big way. Leary lost his job and eventually became an international fugitive. Virtually all legal research on psychedelics shuddered to a halt when federal drug policies hardened in the 1970s.
The decades-long research blackout ended in 1999 when Roland Griffiths of Johns Hopkins was among the first to initiate a new series of studies on psilocybin. Griffiths has been called the grandfather of the current psychedelics research renaissance, and a 21st-century pioneer in the field—but the soft-spoken investigator is no activist or shaman/showman in the mold of Leary. He’s a scientifically cautious clinical pharmacologist and author of more than 300 studies on mood-altering substances from coffee to ketamine.
Much of Griffiths’ fascination with psychedelics stems from his own mindfulness meditation practice, which he says sparked his interest in altered states of consciousness. When he started administering psilocybin to volunteers for his research, he was stunned that more than two-thirds of the participants rated their psychedelic journey one of the most important experiences of their lives.
Griffiths believes that psychedelics are not just tools for exploring the far reaches of the human mind. He says they show remarkable potential for treating conditions ranging from drug and alcohol dependence to depression and post-traumatic stress disorder.
Clinical pharmacologist Roland Griffiths.
They may also help relieve one of humanity’s cruelest agonies: the angst that stems from facing the inevitability of death. In research conducted collaboratively by Griffiths and Stephen Ross, clinical director of the NYU Langone Center of Excellence on Addiction, 80 patients with life-threatening cancer in Baltimore and New York City were given laboratory-synthesized psilocybin in a carefully monitored setting, and in conjunction with limited psychological counseling. More than three-quarters reported significant relief from depression and anxiety—improvements that remained during a follow-up survey conducted six months after taking the compound, according to the double-blind study published December 1 in The Journal of Psychopharmacology.
“It is simply unprecedented in psychiatry that a single dose of a medicine produces these kinds of dramatic and enduring results,” Ross says. He and Griffiths acknowledge that psychedelics may never be available on the drugstore shelf. But the scientists do envision a promising future for these substances in controlled clinical use. In a wide-ranging interview, Griffiths told Scientific American about the cancer study and his other work with psychedelics—a field that he says could eventually contribute to helping ensure our survival as a species.
[An edited transcript of the interview follows.]
What were your concerns going into the cancer study?
The volunteers came to us often highly stressed and demoralized by their illness and the often-grueling medical treatment. I felt very cautious at first, wondering if this might not re-wound people dealing with the painful questions of death and dying. How do we know that this kind of experience with this disorienting compound wouldn’t exacerbate that? It turns out that it doesn’t. It does just the opposite. The experience appears to be deeply meaningful spiritually and personally, and very healing in the context of people’s understanding of their illness and how they manage that going forward.
Could you describe your procedure?
We spent at least eight hours talking to people about their cancer, their anxiety, their concerns and so on to develop good rapport with them before the trial. During the sessions there was no specific psychological intervention—we were just inviting people to lie on the couch and explore their own inner experience.
What did your research subjects tell you about that experience?
There is something about the core of this experience that opens people up to the great mystery of what it is that we don’t know. It is not that everybody comes out of it and says, ‘Oh, now I believe in life after death.’ That needn’t be the case at all. But the psilocybin experience enables a sense of deeper meaning, and an understanding that in the largest frame everything is fine and that there is nothing to be fearful of. There is a buoyancy that comes of that which is quite remarkable. To see people who are so beaten down by this illness, and they start actually providing reassurance to the people who love them most, telling them ‘it is all okay and there is no need to worry’— when a dying person can provide that type of clarity for their caretakers, even we researchers are left with a sense of wonder.
Was this positive result universal?
We found that the response was dose-specific. The larger dose created a much larger response than the lower dose. We also found that the occurrence of mystical-type experiences is positively correlated with positive outcomes: Those who underwent them were more likely to have enduring, large-magnitude changes in depression and anxiety.
Did any of your volunteers experience difficulties?
There are potential risks associated with these compounds. We can protect against a lot of those risks, it seems, through the screening and preparation procedure in our medical setting. About 30 percent of our people reported some fear or discomfort arising sometime during the experience. If individuals are anxious, then we might say a few words, or hold their hand. It is really just grounding them in consensual reality, reminding them that they have taken psilocybin, that everything is going to be alright. Very often these short-lived experiences of psychological challenge can be cathartic and serve as doorways into personal meaning and transcendence—but not always.
Where do you go from here?
The Heffter Research Institute, which funded our study, has just opened a dialogue with the FDA (Food and Drug Administration) about initiating a phase 3 investigation. A phase 3 clinical trial is the gold standard for determining whether something is clinically efficacious and meets the standards that are necessary for it to be released as a pharmaceutical. Approval would be under very narrow and restrictive conditions initially. The drug might be controlled by a central pharmacy, which sends it to clinics that are authorized to administer psilocybin in this therapeutic context. So this is not writing a prescription and taking it home. The analogy would be more like an anesthetic being dispensed and managed by an anesthesiologist.
You are also currently conducting research on psilocybin and smoking.
We are using psilocybin in conjunction with cognitive behavioral therapy with cigarette smokers to see if these deeply meaningful experiences that can happen with psilocybin can be linked with the intention and commitment to quit smoking, among people who have failed repeatedly to do so. Earlier we ran an uncontrolled pilot study on that in 50 volunteers, in which we had 80 percent abstinence rates at six months. Now we are doing a controlled clinical trial in that population.
How do you account for your remarkable initial results?
People who have taken psilocybin appear to have more confidence in their ability to change their own behavior and to manage their addictions. Prior to this experience, quite often the individual feels that they have no freedom relative to their addiction, that they are hooked and they don’t have the capacity to change. But after an experience of this sort—which is like backing up and seeing the larger picture—they begin to ask themselves ‘Why would I think that I couldn’t stop cigarette smoking? Why would I think that this craving is so compelling that I have to give in to it?’ When the psilocybin is coupled with cognitive behavioral therapy, which is giving smokers tools and a framework to work on this, it appears to be very helpful.
You are also working with meditation practitioners. Are they having similar experiences?
We have done an unpublished study with beginning meditators. We found that psilocybin potentiates their engagement with their spiritual practice, and it appears to boost dispositional characteristics like gratitude, compassion, altruism, sensitivity to others and forgiveness. We were interested in whether the psilocybin used in conjunction with meditation could create sustained changes in people that were of social value. And that appears to be the case.
So it is actually changing personality?
Yes. That is really interesting because personality is considered to be a fixed characteristic; it is generally thought to be locked down in an individual by their early twenties. And yet here we are seeing significant increases in their “openness” and other pro-social dimensions of personality, which are also correlated with creativity, so this is truly surprising.
Do we know what is actually happening in the brain?
We are doing neuro-imaging studies. Dr. Robin Carhart-Harris’s group at Imperial College in London is also doing neuro-imaging studies. So it is an area of very active investigation. The effects are perhaps explained, at least initially, by changes in something [in the brain] called “the default mode network,” which is involved in self-referential processing [and in sustaining our sense of ego]. It turns out that this network is hyperactive in depression. Interestingly, in meditation it becomes quiescent, and also with psilocybin it becomes quiescent. This may correlate with the experience of clarity of coming into the present moment.
That is perhaps an explanation of the acute effects, but the enduring effects are much less clear, and I don’t think that we have a good handle on that at all. Undoubtedly it is going to be much more complex than just the default mode network, because of the vast interconnectedness of brain function.
What are the practical implications of this kind of neurological and therapeutic knowledge of psychedelics?
Ultimately it is not really about psychedelics. Science is going to take it beyond psychedelics when we start understanding the brain mechanisms underlying this and begin harnessing these for the benefit of humankind.
The core mystical experience is one of the interconnectedness of all people and things, the awareness that we are all in this together. It is precisely the lack of this sense of mutual caretaking that puts our species at risk right now, with climate change and the development of weaponry that can destroy life on the planet. So the answer is not that everybody needs to take psychedelics. It is to understand what mechanisms maximize these kinds of experiences, and to learn how to harness them so that we don’t end up annihilating ourselves.
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…”
A skull exhumed from the Lapa do Santo cave in Brazil shows evidence of modification such as tooth removal. Hundreds of remains from the site show that beginning around 10,000 years ago, ancient inhabitants used an elaborate set of rituals surrounding death.
Ancient people ripped out teeth, stuffed broken bones into human skulls and de-fleshed corpses as part of elaborate funeral rituals in South America, an archaeological discovery has revealed.
The site of Lapa do Santo in Brazil holds a trove of human remains that were modified elaborately by the earliest inhabitants of the continent starting around 10,000 years ago, the new study shows. The finds change the picture of this culture’s sophistication, said study author André Strauss, a researcher at the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany.
“In reconstructing the life of past populations, human burials are highly informative of symbolic and ritual behavior,” Strauss said in a statement. “In this frame, the funerary record presented in this study highlights that the human groups inhabiting east South America at 10,000 years ago were more diverse and sophisticated than previously thought.” [See Images of the Mutilated Skeletons at Lapa do Santo]
The site of Lapa do Santo, a cave nestled deep in the rainforest of central-eastern Brazil, shows evidence of human occupation dating back almost 12,000 years. Archaeologists have found a trove of human remains, tools, leftovers from past meals and even etchings of a horny man with a giant phallus in the 14,000-square-foot (1,300 square meters) cave. The huge limestone cavern is also in the same region where archaeologists discovered Luzia, one of the oldest known human skeletons from the New World, Live Science previously reported.
In the 19th century, naturalist Peter Lund first set foot in the region, which harbors some of the oldest skeletons in South America. But although archaeologists have stumbled upon hundreds of skeletons since then, few had noticed one strange feature: Many of the bodies had been modified after death.
In their recent archaeological excavations, Strauss and his colleagues took a more careful look at some of the remains found at Lapa do Santo. They found that starting between 10,600 and 10,400 years ago, the ancient inhabitants of the region buried their dead as complete skeletons.
But 1,000 years later (between about 9,600 and 9,400 years ago), people began dismembering, mutilating and de-fleshing fresh corpses before burying them. The teeth from the skulls were pulled out systematically. Some bones showed evidence of having been burned or cannibalized before being placed inside another skull, the researchers reported in the December issue of the journal Antiquity.
“The strong emphasis on the reduction of fresh corpses explains why these fascinating mortuary practices were not recognized during almost two centuries of research in the region,” Strauss said.
The team has not uncovered any other forms of memorial, such as gravestones or grave goods. Instead, the researchers said, it seems that this strict process of dismemberment and corpse mutilation was one of the central rituals used by these ancient people in commemorating the dead.
[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.
Children don’t experience grief quite the same way as adults.
“Children pop in and out of pain and sadness,” said children’s counselor and author Donna Schuurman. “Adults tend to be more steeped in their grief — they don’t bounce in and out as much and often sleepwalk through their grief.”
Rituals can help children work through grief.
This is Children’s Grief Awareness Month, a time to consider the needs of these sometimes forgotten mourners.
Schuurman, author of the book “Never the Same: Coming to Terms with the Death of a Parent,” knows a little something about children’s grief. She has a 30-year stint with the Dougy Center in Portland, which provides a haven for grieving children and their families. She and other Dougy Center staffers have also assisted after large-scale tragedies such as the Oklahoma City bombing, 9/11 attacks and the 2011 earthquake and tsunami in Japan.
When someone dies, children grieve. Sometimes adults make the process harder.
“There are a lot of things people do to make it worse, such as not allowing kids to have their feelings, whatever they are,” Schuurman said. “We have a tendency to want to cheer people up.”
Talking about the person who died is a good thing, instead of avoiding the subject. Sharing memories helps kids heal.
“They are trying to hold on to precious threads,” she said. “Acknowledge the person with “There’s nothing I can do to bring your dad back, but I want you to know I care” or “Can I tell you a story about your dad?”
After a death, children worry about their other family members dying, too.
“Anyone could die any moment,” she said. “There is heightened anxiety.”
Children sometimes don’t have the words and experience to understand death the same as would an adult. In one Dougy Center video, a three-year-old named Myia described losing her mommy.
“I wanted to sing ABCs with my mom and she stopped singing,” Myia said. “Her body stopped singing.”
“Then what happened?” a Dougy Center staffer asked from off camera.
“She died and then I was crying,” Myia said. “It was not good. I had a bad feeling.”
The little girl’s brown eyes radiated deep sadness, more than any child should have to bear.
As with adults, a child may take a long while to grieve a loss. That’s okay, Schuurman said.
“In our society, we want quick fixes. We want to get through it,” she said. “You can’t rush grief. It’s not quick. It takes digestion time.”
Basically, Schuurman said, there’s no map for the grief journey and sometimes the process is not a linear one.
Children need to recalibrate their lives after the death of a parent, sibling or other loved one. Sometimes there is guilt. Relationships are complicated, that way. A sibling, for example, might have been someone the child both loved and hated, depending on the moment.
If a death came with a lot of physical trauma, a parent might wonder how much to tell a child about the person’s final moments. Schuurman urged candor, as much as the child can handle.
“It’s best to answer their questions honestly, but don’t tell them more than they’re asking or they are open to,” she advised.
When a child asks whether the person died instantly or whether he or she suffered, it’s tough.
“You want to say no when the reality is they were moaning for an hour,” she said. “I might say, ‘From what I understood of the hospital report, he didn’t die instantly. I don’t really know, but the body protects us from horrible pain by going unconscious.’”
Processing grief is easier when the child can spend time with other children who have suffered loss.
“Until you experience death in your own life, it’s hard to understand,” she said. “So you come to be with others who get it.”
