[T]he new year is a good time to put making end-of-life wishes at the top of your to-do list.
It’s a perfect time to tell family and friends your health-care preferences in case one day you’re unable to speak for yourself. This advance care planning is good for your peace of mind and for your loved ones, too.
Studies show that people who have conversations about their end-of-life preferences are much more likely to be satisfied with the care received. And their caregivers are less likely to suffer from depression or be left wondering if they made the right decisions for their loved ones.
The majority of those nearing end of life are often unable to make decisions for themselves. Yet a recent poll found that only half of Canadians had discussed their wishes with family or friends – and only 10 per cent had discussed the topic with health-care providers
So here are four steps to help guide conversations about your advance care plan:
1. Reflect on what makes life meaningful for you
What do you value most about your physical and mental health? For many, this includes independence, interacting with family and friends, and favourite hobbies. Now imagine what might make life unacceptable for you.
Modern medicine can and will prolong life in many cases. But it can also mean prolonging the end of life and may require living with severe limitations, such as reduced mental capacity, loss of ability to control bodily functions, lack of mobility and loss of privacy. This is unacceptable to many people; one study found that over half of seriously-ill patients in hospital would rather not be kept alive on life support when there is little hope for a meaningful recovery.
Advance care planning is typically thought about in the context of advanced age or specific diagnoses such as cancer. However, it’s important for everybody to do, and particularly for those with multiple medical problems and frailty. While frailty increases with age, it can occur at any age and increases the chances of dying. Although catastrophic illness can occur at any time, frailty increases the likelihood that end of life is nearing and when life-prolonging procedures may not be appropriate or effective.
While many people reaching the end of life say they want to die at home, without an advance care plan, they are often trapped in hospital enduring heroic procedures rather than receiving comfort care during the little time they might have left. Comfort care includes pain and symptom management to prevent or relieve suffering at the end of life
2. Find out your care options and choose a substitute decision maker
Learning about care procedures for end of life will help inform your advance care plan. You can find some common medical and legal terms at advancecareplanning.ca. And talk to your doctor.
Many sick or elderly people worry about being a burden to their families. The good news is that patients who have end-of-life conversations place less of a strain on caregivers, and are more likely to receive hospice care or palliative support at home.
Think about and designate a substitute decision maker. This is someone you trust to make health-care decisions based on your wishes in the event you can’t make them.
3. Talk about your wishes
Talk to your substitute decision maker, loved ones and your doctor
Your loved ones will be grateful that you spoke up. When patients have an advance care plan, their families are much more likely to know that their loved one’s wishes were known and followed. Lack of planning has been shown to leave families less satisfied during terminal illness or in the months following death.
There are many ways to get the conversation started and it doesn’t have to be grim. The pallimed.org blog recommends humour as a useful strategy. It may take a few tries to be heard but don’t give up
4. Write it down – just like a will
Once you’ve arrived at a plan, write it down and make sure everyone knows. In particular, make sure that health-care providers and institutions are aware and have noted it in your chart. At present, patient preferences are only known in a minority of cases.
Canadians are living longer and healthier. A little planning can ensure the well-being of you and your loved ones at the end of life as well.
You’ve probably already written a will for your things, so why not write an advance care plan for yourself?
[P]erhaps like I, you like to eat pizza and watch movies on Friday nights.
One night, I watched, “Cleaner.” Samuel L. Jackson plays a former police detective who owns a company that cleans up death scenes.
The opening scene takes place at his 30th high school reunion. His former classmates are all standing around awkwardly with drinks, making small talk about what they’ve been doing for the past 30 years. Someone asks The Cleaner what he does. He responds with the utmost respect and compassion necessary for speaking an ugly truth,
“I handle the remnants of heartache and disappointment so that people can go about the business of healing. Most people don’t know this, but someone dies in your home, you are left to clean it up.”
The classmates look confused. The Cleaner shares in vivid detail, right down to the special mixture he invented from Listerine to un-coagulate blood. Everyone is horrified; mouths agape, shifting from one foot to another, coughing nervously. Noticing their discomfort, he tries to avert attention, asking one of the guys how things have been going for him for the last 30 years;
“Oh, married to the same woman since college, the kids are great, playing a little golf, just got a bigger house so my mother-in-law could move it. It’s fine; she almost never leaves her room. Some day she won’t come out.”
Then, a funny look of realization flits across his face and he says to the cleaner, “Um, can I have one of your cards?” “Sure,” comes the response, “sooner or later, everyone needs us.” One at a time, each person in the crowd steps forward for a card.
The opening scene touched me; it felt familiar. People who deal with death know what it feels like to be a skunk at a lawn party.
That’s pretty much how people react when I tell them I am a hospice chaplain; initial discomfort that such service is necessary, followed by the realization that almost everyone needs hospice care for themselves or a loved one eventually, and finally the realization that the person standing in front of them, who tends to the very deepest of sorrows, does so from a place of deep compassion and love. Then, they ask for my card.
Love, loss and longing…those are the themes that I work with every day in my ministry.
I love my job, but the most frequent question I get asked is, “Isn’t it depressing?” It isn’t. It is sad, often, but not depressing. Depression is isolating, lonely, hopeless. Sadness (sorrow) is a point of deep connection, because as human beings, we all experience it at various points throughout our lives. Joining in that emotion, and the emotions of love, loss and longing that drive sorrow (sadness) begets a deep heart-connection, one to another; the very antithesis of the isolation, loneliness and hopelessness of depression; the very essence of what it means to be in communion, in community, in common, with one another.
Do you know what people talk about when they are dying? We talk about love; pretty much exclusively. When we come to the end of our lives and the conversation has narrowed down to, “What was the point of me?” people reflect on love. It is true that dying people never talk about the unfinished business at work. We talk about the unfinished business in our intimate relationships. We talk about the loves that made us whole; the loves that gave us joy and meaning and pride…and the loves that broke our hearts. We talk about the ones that we loved well and the ones we forsook. We talk about the intimate love of family and dear friends, and the love for humanity that compels us to reach out to strangers in our professional and private lives.
People are made for love. We are made to love. The measure of a life well-lived is always and only a person’s courage in loving.
But though our lives are meant to be a love story, we learn along the way that all love stories end in tragedy. Whether through choice or through death, someone always is left to grieve.
Leaving friends and family and home for school or work or marriage is a kind of a death. Broken relationships are a death. Divorce is a death. The end of a life is a death. The grief that goes with any death is heartbreaking.
Heartbreak hurts! The feeling of ripping and then aching in our chest, the initial agony of waking up crying, being utterly consumed by the sense of loss, feeling hopeless.
My eldest daughter loaned me a novel recently. It was a light read. Nevertheless, just as even the most simple people contain great wisdom, so does simple reading.
“When you drop a glass of wine or a plate to the ground, it makes a loud crashing sound. When a window shatters, a table leg breaks, or a picture falls off the wall, it makes a noise.
“But as for your heart, when it breaks, it’s completely silent. You would think, as it’s so important, it would make the loudest noise in the whole word or even have some sort of ceremonious sound like the gong of a cymbal or the ringing of a bell. But it is silent and you almost wish there was a noise to distract you from the pain.” If You Could See Me Now by Celia Ahern
Isn’t that the truth?
When a heart breaks, it is completely silent. But loss is the price we pray for living into our purpose, which is to love. Love, loss, longing; they are all of one piece. Life.
In the months following my nephew, Mark’s sudden death at aged 7, none of us could have ever imagined that his parents would smile again. But then, unexpectedly, like a rainbow arching over the deep, wild, mysterious ocean, something struck my sister-in-law funny one night at dinner, and she laughed. We never stopped missing Mark, of course. His life and his love and his death shaped our lives and expanded our souls. But his mother’s laughter was testimony that there is yet hope and joy and life to be had after loss. Something good is always waiting to be had, eventually. The resiliency of the human spirit is extraordinary. The human capacity to hope beyond hope is truly amazing.
Every day, I keep company with men and women and children who are dying and with their families. It can be a time of profound grace, even in the midst of deep sorrow. Time to look back, pay honor to, and close out a life is precious time.
There are four phrases that chaplains often offer to people who are dying and to those they love the most, to facilitate sacred conversations:
“I love you.”
“I am sorry for what has gone wrong between us.”
“I ask your forgiveness for the part I had in any hurt between us.
“I thank you for your role in my life.”
There is no need to wait for such sacred conversations. We can have them at any time, and be blessed by the sharing.
I leave you with a reflection on love, from Dr. Peter Kreeft, from “The Turn of the Clock”
“What to say to a dying person: the profoundest thing you can ever say to a dying person is: I love you. Not even God ever said anything more profound than that.”
Crofton’s Ernie Sievewright and wife Kay (in picture) died with the assistance of a doctor.
by Robert Barron
Surrounded by his many friends and loved ones, Ernie Sievewright finally died with dignity in his Crofton home on Jan. 15.
After wading his way through a long bureaucratic process that began late last spring, the wheelchair-bound senior from Crofton was finally allowed to legally commit suicide with the assistance of a physician on Sunday under Canada’s new Medical Aid in Dying legislation, which became law in June.
His death follows the physician-assisted suicide in their home on Jan. 11 of his beloved wife Kay.
Kay had been suffering for some time from complications of multiple sclerosis and other medical issues at a nursing home in Duncan.
That makes Ernie and Kay among the first couples to successfully access doctor-assisted suicide in Canada since the Supreme Court of Canada voted unanimously to strike down the federal prohibition against it in Bill C-14.
Bill C-14 restricts physician-assisted deaths to mentally competent adults who have a serious and incurable illness, disease or disability.
Sievewright suffered from cauda equina syndrome, a serious neurological condition that causes loss of function of nerve roots along the spinal cord.
Before his death, Sievewright said the quality of life he and Kay had was continuing to deteriorate rapidly, so they decided that death was preferable.
“It was very difficult for me to see Kay in pain all the time, and I live at home alone in a wheelchair dealing with the pain of my own illness and counting on friends to come by and pick me up when I fall,” he said.
“There’s no value in our lives anymore, so we had to ask ourselves what was the point of sticking around. We didn’t want to minimize our decision, but it was well thought out and we had discussions with friends and family. We all agreed that this was the best for both of us.”
But the approval process was long, and both had to meet with countless doctors and other specialists for their assessment and approval, so it took many months before they were finally given the green light.
Both died quickly and painlessly by lethal injections delivered by a doctor.
Sievewright invited the Cowichan Valley Citizen to his home just 36 hours before his scheduled death.
It was the happiest this reporter had seen him in the four months since I first met the Irishman with his infectious grin.
During that encounter in October, Sievewright was frustrated with all the meetings and consultations with doctors and delays he and Kay were facing in the process.
All that was in the past in the hours after he held Kay’s hands on Jan. 11 while the lethal injection was being administered to her.
“I feel really, really good,” he said at his kitchen table while friends looked on.
“I was a little upset that we couldn’t go together, but now I’m glad that Kay went first and I was with her at the time. She went so peaceful and beautifully and it was a great relief for me to see that. I’m not frightened now of my own death.”
Sievewright said he still wished the process could have been easier and quicker, but all the doctors and medical officials he and Kay dealt with were very kind, and did the best they could for the couple under the new law.
Dr. David Robertson is the co-chairman of Dying with Dignity Canada’s physicians advisory council.
He said there are no day-to-day records of exactly how many people have died through doctor-assisted suicides across Canada since Bill C-14 was legislated in June.
But Robertson said it’s been estimated that approximately three doctor-assisted deaths have been occurring a week on Vancouver Island for the last six months.
“I think the numbers across Canada are steadily increasing, particularly on the Island which has a long history of activism on this issue,” he said.
Robertson said it’s a fact that some doctors and nurses have personal views and are reluctant to participate in doctor-assisted deaths, “but many others are very willing”.
He said there are currently only 12 physicians on the Island who have taken the required training to perform the deaths, and many more are in the process of completing the education.
But Robertson said the numbers of medical staff who have the training and expertise have little to do with the amount of time it takes for people to make their way through the medical bureaucracy.
“We have the same requirements in B.C. as the rest of the country, and there are numerous documents and forms to be filled out and steps that have to be taken,” he said.
“There are very high standards to fit the criteria, so this is no simple process. It’s not a decision that patients or the medical community take lightly. We’ll continue to monitor physician-assisted suicides across the Island and the country and develop the process as we go to better fit the needs out there.”
As for Sievewright, he was just happy to finally get to the end of his long journey.
“Kay said she’d have the boat in the water with a full bait bucket and at least one dog on board waiting for me when I get there, and we’ll go fishing on flat and calm seas,” he said with a smile.
“I’m hoping that this really happens because it would be fantastic. Kay and I have lived a rich and full life. All is now in order, and we’re ready to move on.”
[E]very year 43,000 children die in the United States.
But, when people talk about death they rarely talk about kids. For many, the death of a child can be too much to even consider talking about. But, kids do get sick and face the end of life.
When your work concerns the children facing the longest odds you do not get to ignore the truth.
“I can’t tell you how many times kids have answered that question of ‘What are you worried about?’ with ‘I’m afraid I’m dying and it scares mom to talk about it,’” says Kris Catrine at Children’s Hospitals and Clinics of Minnesota.
“Anything else a kid wants to talk about they can talk about with their family and have support and this is sort of taboo. So, the scariest thing in their mind they can’t talk about; that’s a lot of weight on a child,” adds Catrine.
Dr. Stefan Friedrichsdorf at Children’s Minnesota and his staff work tirelessly to fight for life, but also realize another conversation has to happen.
“What we are asking is like considering what your daughter is up against, what are you hoping for? And, most of time, we hear ‘I hope for miracle cure.’ And, then you look them in the eye and say ‘I hope this too,’” said Dr. Friedrichsdorf. “Just in case a miracle does not happen, what else are you hoping for?”
They talk about what will make the child happy. Whether that’s just to go outside, go to school again or just to talk about what’s going on.
Kris Catrine and Dr. Friedrichsdorf work in the Palliative Care program at Children’s Minnesota.
[K]ay Carter had been suffering from spinal stenosis for years and knew she was going to become debilitated before she would die. Rather than wait until she was no longer in possession of her own body, the 89-year-old chose to die on her own terms. She left this world peacefully at the hands of a Swiss palliative care physician with her loved ones by her side.
Physician-assisted suicide was not legal in Canada at the time of Carter’s death, and as her condition worsened she knew she would lose the capacity to consent to have a physician assist her, so she travelled to Switzerland while she was still able-bodied.
“She had a premature assisted death because she couldn’t get one here in Canada,” explained Michael Begg, a professor of legal studies at Capilano University. “Some would say that the criminal prohibition killed Kay Carter, since it forced her to die years early.”
Carter’s story made up the framework for the legal case, Carter v. Canada, which over a five-year period would challenge the Harper government to reform the assisted suicide law in the Supreme Court of Canada. Carter was able to die on her own terms, but many before her had been denied that right, and their stories date as far back as Canada’s founding.
She received death threats and found herself having to wear a bulletproof vest into the clinic where she work … Many abortion doctors who ultimately quit practicing did so because of threats or attacks made against themselves or their families.
The Criminal Code of Canada was written in 1892 according to the moral guidelines of Victorian society. Protestant Christian worldview shaped legislature, and both suicide and assisted suicide were outlawed. The taking of one’s own life was an unforgivable sin, and those who were found guilty of it could not be buried in consecrated ground or ever hope to gain access to heaven.
In 1972, the law prohibiting suicide was repealed. The right to refuse life-saving medical treatment or intervention was also introduced, giving people more autonomy over their health care. Assisted suicide was still illegal, classified as murder for which physicians could receive a prison sentence of up to 14 years, but support was growing with newfound understanding of detrimental ailments that were prolonging people’s suffering well beyond what they were willing or able to cope with.
In 1993, ALS patient Sue Rodriguez appealed for the right to die with a physician’s assistance. She argued that in not being allowed to seek help, the law circumvented section seven of the Charter of Rights and Freedoms, which guarantees any individual rights to life, liberty and security of person.
“The government can violate a Charter right – but only where the courts find the violation is ‘justifiable’,” said Begg. People recognized that in denying Rodriguez the right to die, her personal autonomy was stripped away and in essence, the government claimed ownership of her body. The Supreme Court ruled that the state of the law was justifiable. “In 1993 there was a fear of potential abuse,” Begg continued, but the fear displayed by the courts was unfounded, because at the time there was no evidence to prove that the practice of euthanasia would go down a slippery slope. Rodriguez ultimately took her own life with the assistance of an anonymous physician.
“The political parties had no will to change the law to allow assisted dying because it was such a political hot potato. Most Canadians didn’t have a strong opinion on it, liberals and conservatives were not eager to take proactive steps to change the law,” said Begg. Carter’s family challenged the law again in 2011. In the time since Rodriguez had gone to court, Oregon, Belgium, Luxembourg and the Netherlands had legalized assisted suicide and set up regimes to carefully monitor assisted death and ensure that the practice was not being abused. The Canadian courts saw this and overturned the previous ruling, legalizing assisted suicide on Feb. 6, 2015.
Legalizing assisted suicide couldn’t be achieved overnight however, so the Supreme Court suspended the law for one year so regulations could be drafted. The Harper government put off writing the bill until Justin Trudeau entered office in Nov. 2015, and the Liberal government was hard pressed to draft euthanasia proceedings in time for the Feb. 6 deadline. The bill was further extended, and on June 6, 2016 formally became law, with regulations introduced on June 17.
“This is a legal right that Canadians have but if you don’t have a provider, you don’t have access, then you can’t exercise your right,” said Dr. Ellen Wiebe, a former full-service family doctor who specializes in women’s health and end of life treatment. “When I discovered that the palliative care physicians, who normally would be doing the end of life care would not…have anything to do with assisted death, then I realized that there would be a need for providers and that I could be one.”
As one of few doctors who provide abortion services and euthanasia, Wiebe has risked her life to tend to patients. Those who she has treated have been extraordinarily grateful for her services, she explained, but certainly there have been others who have frowned upon her work.
In 1994, an anti-abortion terrorist shot her colleague, Gary Romalis. The attack put Dr. Wiebe at risk since she was known publicly. She received death threats and found herself having to wear a bulletproof vest into the clinic where she worked. Her young son was terrified, and it was his fear that caused her to wonder if her work was putting her children at risk. Many abortion doctors who ultimately quit practicing did so because of threats or attacks made against themselves or their families.
Saddened that the stigma surrounding abortion never subsided as she had hoped, Wiebe pressed on and ultimately began performing end of life care for the same reasons she had when she began performing abortions. Wiebe was determined to provide a service that few others would because it was so steeped in stigma. She calls herself an activist for complete bodily autonomy.
Following the outcome of Carter v. Canada, Wiebe had one year to learn all of the skills she would need to administer euthanasia treatment. She travelled to the Netherlands and studied under doctors who had been practicing euthanasia for years. In Canada she set up a support group where doctors could learn and support each other in preparation for June 6 when the ruling became law.
Though she has observed far greater support in Canada for the right to die since then, Wiebe knows that controversy will linger for years to come. “The support is certainly solid, but there’s still lots of people who disagree,” she said, “and that will always continue, I think, because in the Netherlands where they’ve had decades of legal euthanasia they still have people who are against it.”
There are several activist groups in Canada currently speaking out against assisted suicide, including the Quebec-based Physicians’ Alliance Against Euthanasia. The coalition has spoken out against assisted suicide on the basis that intentionally ending life is a complete contradiction of the goals of practicing medicine. Some anti-euthanasia physicians have affirmed that they will not be participating in the practice while activists have stated that they intend to reverse the law yet again and call for a total ban on assisted suicide.
The Carter v. Canada ruling stated that a physician’s decision to participate in assisted dying was a matter left to his or her own conscience or personal religious beliefs. Abortion services are the same. A medical practitioner cannot be forced to provide a service that contradicts their personal beliefs. When there are no providers, a medical service that is a right guaranteed by law is made difficult if not impossible to obtain. Criminal law is mandated at the federal level and health care is regulated at the provincial level. A province can virtually outlaw euthanasia by making it inaccessible, which can be challenged in court on the grounds that personal Charter rights have been violated.
“There is potential to use the Charter to force a particular province to make assisted death more accessible,” said Begg, but if a physician doesn’t want to see their patients die when they believe there is a chance of saving them, they can’t be forced to.
“I had a patient who chose his date six months out…and he did live that long so he was able to die on the date that he had originally chosen.”
A primary fear is that people with non-debilitating or lethal conditions will give up living if an easy death is a viable alternative.
In Dec. 2012, Belgian twin brothers Marc and Eddy Verbessem died by lethal injection after finding out that they were going blind. Already deaf, they had no means of communicating with anyone but each other and their close family. They had lived together all their lives, and their brother reported that they felt they had nothing left to live for. Knowing that they would never see the other’s face again, they couldn’t bear to go on living.
In a bizarre twist, an amendment was added to the assisted suicide bill just days after their deaths enabling minors and Alzheimer’s patients to receive an assisted death. Despite making their wishes clear, the Verbessem brothers were an unusual exception to Belgium’s laws since they were neither terminally ill nor suffering unbearable physical pain. A case of an able-bodied person with no degenerative disease killing themselves followed by additions that would allow children to die also is the slippery slope that legislators feared when judging Rodriguez v. British Columbia.
Another fear is that the sick or the elderly will feel burdened or be pressured into undergoing euthanasia by their relatives if their medical treatments are costing too much. To prevent abuse of the conditions that allow for assisted suicide, Wiebe assesses her patients before they can receive the lethal treatment.
“Certainly it’s part of our job to assess each patient and be sure that they’re not being pressured. I haven’t seen anything that made me worry,” she said. “Every one of them I am satisfied that we did the right thing and that their choice was a good one.” She consults with her patients, often with their families or support groups present, to discuss their illness and their wishes. She asks her patients about their relationships and monitors how they interact with their family members before making a final judgement. It’s a subtle but obvious way, she said, to be sure that their wishes are entirely their own.
Patients are also required to undergo a 10-day reflection period before euthanasia will be administered. The reflection period was mandated to prevent patients from making hasty decisions after being diagnosed.
“There’s two reasons we’re allowed to shorten up the time from the 10 day reflection period, and those are somebody’s in danger of losing capacity — losing the ability to consent — or in danger of dying in those 10 days,” Wiebe explained. “I’ve had people who are within 24 hours of death, for example, and those have to be done very quickly, and others spend a long time deciding. I had a patient who chose his date six months out… and he did live that long so he was able to die on the date that he had originally chosen.”
Since June 6, Wiebe has consulted with over 100 patients and assisted 40 of them in ending their lives on their own terms. “It is wonderful work. Doctors love having grateful patients and I have the luck of being able to do something that people really appreciate,” she said.
The battle for the right to die has hardly abated. The regulations were written hastily so that they would meet the Supreme Court deadline of June 6, and as a result many Canadians believe the laws to be too restrictive. Safeguards such as the mandatory waiting period ensure that vulnerable people cannot undergo euthanasia before the terms of their illness have been fully processed, and two witnesses are required to attest to their wishes.
“The biggest of the flaws in the Trudeau government’s bill, critics say, is that the Criminal Code only allows assisted death for those who are facing imminent death,” said Begg. Only those suffering from a terminal condition can seek assistance, omitting hundreds of people who are suffering irreparably but not likely to die. People like Kay Carter, who would have lived in agony.
Most of us wonder, every once in a while, when we might die.
Noreen Campbell knew it would be Thursday and it was.
On Monday, she walked from her kitchen into her sun room, which looks onto a rural North Saanich property.
“I’ll go in here,” she said, sitting down in an overstuffed, beige leather chair. Her daughters, Mary and Jane, would be at either side, she said, and her husband, Cliff, would be there, too.
Campbell, 71, could still walk, talk and form coherent thoughts. She wasn’t bound to a hospital bed or so far gone that her family had to wonder about her level of consciousness. But as a registered nurse for 53 years, she had watched many people suffer in their final days and said she had reached her threshold.
“Some people might think I’m too capable, but why should you wait until you have to roll me in?” Campbell said.
“I’m ready.”
Campbell was among the first to receive approval for medical assistance in dying. That was in August, two months after landmark legislation was enacted to allow the procedure in Canada.
She chose to share her story in the hope that it might open the door for others facing death and draw attention to gaps she saw in the process. “I have this feeling that if you’re not part of the solution, you’re part of the problem. With my background, the failure to do something would be negligent,” she said.
“I believe this is the message: To reassure patients and their loved ones that there is an alternative — and give them hope and courage.”
Campbell’s health decline began with a bit of discomfort in 2012. She had a toothache that wouldn’t go away.
“One day, I was sitting and thinking and it was like a smack to the side of the head. I was the educator for the surgical unit that does oral cancer and I thought to myself: ‘What would cause the pain to stay in the same place, be consistent and get worse?’ I asked for a biopsy. And I had very extensive oral cancer,” she said.
“I think it was missed because I’m not a smoker.”
She underwent surgery to remove tissue and bone in her face and jaw, alleviating what had become horrific pain.
About a year after the surgery, she was diagnosed with chronic obstructive pulmonary disease, which is a progressive obstruction of airflow into or out of the lungs.
As a nurse, Campbell had watched many people die. Her worst fear was respiratory disease, she said, having seen, more than once, the extreme suffering of a person who is desperate for air. Faced with the same future, she began planning a trip to Switzerland, where assisted dying is legal.
A Supreme Court of Canada ruling in May 2015 meant she wouldn’t have to make the trip.
The assisted-dying movement largely began in Canada in the 1990s, with Sue Rodriguez, also from North Saanich.
Rodriguez suffered from amyotrophic lateral sclerosis (ALS) and wanted the legal right to end her life with the help of a physician. She lost her legal challenge to the Criminal Code’s prohibition on assisted death, but died in 1994 with assistance from an anonymous physician.
More than 20 years later, in 2015, the Supreme Court unanimously voted to strike down the prohibition and allow medically assisted death. It was legalized with passage of the Medical Assistance in Dying Act on June 17, 2016.
Two days later, Campbell submitted her application.
“I was ready,” she said.
Noreen Campbell underwent a medical assistance in dying procedure Thursday, here she spends time with her horse Dasha in Victoria.
Campbell told her doctor she wanted it as a backup. A respiratory infection could put her in the agony of not being able to breathe and she wanted the power to control her end, if that was the case.
“Simply put, I’d rather end it in two minutes than two days.”
Gradually, her disease progressed to the point where symptom management became a 24/7 job, she said. It had been years since her health began to decline and it became clear that she was dying.
“I think it is this perfect storm. It’s not one symptom, it’s things coming together and they just start to pile up. It’s not just my inability to breathe or my jaw pain. It’s everything. And when you know, ‘This will not get any better’ … there’s a point where you make your decision. And my point was when I was overwhelmed and I felt like I could no longer cope.
“I am dying. I am getting weaker. I can do less, symptom control is overwhelming me. I’m going to die; end of story. And I suddenly get this choice: Do I want to die in less than five minutes? Compared with [experiencing what] the people I’ve witnessed who died over hours and days went through — there is no choice. Otherwise it’s called torture,” she said.
Campbell pressed her finger over her breathing tube each time she spoke, allowing air to pass through her voice box.
Facing death made her reflective, she said.
“We all know we’re going to die, but we don’t have it in our heads. I think, culturally, we have a lot of escapism. When you look at the time before antibiotics, in the 1900s, you were grateful to be alive. But in the 2000s, we’re looking for a way to get out of this life. We have not prolonged healthy living; we have prolonged life by preserving chronic illness.”
After so many years serving at bed sides, she said being in a hospital bed and then as an at-home patient gave her a new perspective on care. Not enough attention is given to a patient’s suffering or quality of life and patients still aren’t provided with all the information they need to make informed decisions, she said.
It begins with doctors talking over a patient’s head — though in her case, she understood what they were saying. And it continues with the difficulty of obtaining information about medical assistance in dying.
Campbell said ambiguity in guidelines from the College of Registered Nurses of B.C., accompanied by recommendations to consult your employer and legal representation, for example, would discourage nurses from communicating with patients about the option unless they ask for it specifically. “I see this as an absolute conflict with suicide-prevention guidelines, which say, if someone walks in and says ‘I can’t go on,’ my question [as a nurse] should be, ‘What’s the matter?’ Not, ‘I can’t talk about that,’ ” Campbell said.
Before Bill C-14 passed into law in June, the federal government added conditions that would exclude many individuals from medical assistance in dying, arguing it needed to protect vulnerable people. It limited the right to mentally competent adults who are suffering unbearably, in an advanced and irreversible decline and whose natural deaths were reasonably foreseeable.
The law has been simultaneously celebrated for opening access, challenged on the basis that it would conflict with medical staff’s freedom of religion and criticized for being too narrow.
Justice Minister Jody Wilson-Raybould has said if assisted-dying was available to anyone suffering from a serious medical condition, then it would be an option for survivors of sexual abuse and soldiers with post-traumatic stress disorder. And the Council of Canadians with Disabilities has said the act needs more restrictions to protect people with new disabilities, who might feel hopeless before they adjust to their new reality.
A 25-year-old woman with spinal muscular atrophy has launched a constitutional challenge, with the B.C. Civil Liberties Association, to expand the right beyond those facing “foreseeable” death.
For Campbell, too, the law doesn’t go far enough. The requirement of “foreseeable death,” doesn’t take into account what can be unbearable suffering from chronic illness.
Suffering, she said, is not always a virtue.
“We should be looking more at what quality of life means to people,” she said.
“I think suffering, pain, does help people mature. That’s the difference between being a kid and an adult. Even if it’s your first broken-heart romance and you see the dud later and think, ‘Thank God,’ there’s a certain amount of pain that’s necessary to make us an understanding society and for people to develop empathy and sympathy. But the idea that suffering is always worthwhile, it’s just beyond me.
“From the time when I was approved, from the time I decided, ‘yes,’ I would say I have experienced the most calm. It’s hard to imagine, but it’s given me a chance to do things,” Campbell said, when asked if she was afraid of death.
She completed a manuscript on wound care, her specialty as a nurse. She became an honorary member of an East Coast chapter of the activist group Raging Grannies (she asked that the story end with “Rage on!”). And she published a video explaining her choice with the advocacy group Dying with Dignity.
She said she didn’t believe in bucket lists — they just cause anxiety. But the knowledge that she would get medical help in dying, when it was time, meant she didn’t have to waste time wondering.
“The other thing we don’t have is a roller-coaster. When you have people who are chronically ill, they’re desperately ill, then recover, then desperately ill, then recover. When you have medical assistance in dying, your focus can be on a comfortable death.”
On Thursday, she went into her sun room and sat down with her family. Her physician gave her a sedative, then via IV, something that would stop her heart. But first she sent the following in an email:
“This is my day — I was able to watch my grandson play hockey, we have had a string of celebrations — tears sure — but so much laughter. Thank you Canadians for making a peaceful death possible for me and sparing my family and friends from witnessing a death with fear and suffering.”
Collection features 75 perspectives on death in Ireland and whets appetite for further study
“The Humours of an Irish Wake as celebrated at St Giles London.” Original artwork: engraving by Thornton, published by Johnson c 1750.
By Bridget English
[T]he Irish wake is nearly as celebrated and stereotypical an Irish export as Guinness, leprechauns or shamrock. Its reputation as a raucous, drunken party that celebrates the life of the deceased is now regarded internationally as a desirable way to mark the end of one’s life, even for those who claim little or no Irish heritage.
It is conceivable, then, given the famous link between Ireland and death, that the Irish “do death well”. Where does this association come from? Do the Irish really “do” death better than anyone else? These are some of the questions behind a new collection of essays, Death and the Irish: A miscellany, edited by Salvador Ryan, a professor of ecclesiastical history at St Patrick’s College Maynooth.
The collection is part of a recent surge of academic interest in death and dying, as is evidenced by the publication of edited collections such as Grave Matters, Death and Dying in Dublin, 1500 to the Present (2016), edited by Lisa Marie Griffith and Ciarán Wallace, and Death and Dying in Ireland, Britain and Europe: Historical Perspectives (2013), edited by James Kelly and Mary Ann Lyons, both of which explore these themes from a historical perspective.
>Subtitled “a miscellany”, Death and the Irish is different from these publications because it features a medley of 75 perspectives on death and the Irish from historians, hospice workers, geographers, sociologists, anthropologists, theologians, priests, librarians, musicologists, and funeral directors, to name a few. It also covers a vast time span, taking readers from the fifth century to the present day.
Entertainment
The brevity of the essays (around three to four pages, including footnotes) and their pithiness, though a departure from the extended discussions commonly found in academic anthologies, is true to the form of the miscellany, which was originally intended for the entertainment of contemporary audiences.
Death and the Irish will interest readers looking for interesting tidbits of information on death and provides ample fuel for those searching for inspiration for further research.
Some tantalising morsels from the miscellany include: the tale of a young woman buried with her horse sometime between 381 and 536 AD; the variety of terms for death in the Irish language; social media’s role in keeping memories of the dead alive; an analysis of Stuart-era funerary monuments and what they reveal about women’s role in society; the 18th-century Dublin practice of laying executed corpses at the prosecutor’s door; a quirky account of the discovery of James McNally’s death by elephant in Glasnevin cemetery’s burial registers; and the story of a young cabin boy’s death by cannibalism.
Given the number of entries included in the volume, it is not possible to provide a detailed account of each, but a few entries are worth mentioning. Clodagh Tait’s Graveyard folklore and Jenny Butler’s The ritual and social use of tobacco in the context of the wake are particularly thought-provoking accounts of folk practices and the material cultures surrounding death. Tait’s gruesome description of the pieces of human remains that were collected for charms and the dead man’s hand that “could be used to make churning butter less onerous” provides readers with images that they are unlikely to soon forget.
One downside of Death and the Irish is that the experience of reading such short essays can be frustrating for anyone (particularly students) coming to the collection looking for an extended discussion of death practices in a particular era. Organising the entries by time period or by theme (burial, folklore, historical figures or events, etc) might make for more streamlined reading, but to do so would also destroy one of the collection’s main strengths, which is to bring disparate approaches together, taking interdisciplinarity to an extreme, provoking new ideas through a multilayered view of death in Ireland.
Under-represented
Despite the inclusiveness of Ryan’s miscellany, certain disciplines, such as history and theology, seem to dominate, while others are absent or under-represented. Philosophers have certainly shaped the ways that modern secular society conceives of death, yet there are no entries on the relationship between Ireland and philosophy.
Irish film, literature and drama feature some of the most insightful and humorous portrayals of death and dying in western culture, yet there are only three entries on literature, and these are limited to poetry (Irish language poetry, bardic poetry and 18th-century elegies).
These are minor criticisms and on the whole, Death and the Irish: A miscellany is commendable for its inclusion of marginalised groups such as Travellers, and for the links made between Irish practices and Jewish and Muslim beliefs. The Irish may not necessarily “do” death better than anyone else, but as this volume makes clear, the history and rituals surrounding death offer a rich and complex area of study, one that has much to tell us about Irish attitudes towards mortality and treatment of the dead.
