11/30/16

Finding death, when the assisted dying law leaves you out

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Despite new legislation on assisted dying, some Canadians remain in a desperate catch-22. Ruth Duffin was one.

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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. (Photograph by Jessica Deeks)

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.

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. (Sean Kilpatrick/CP)

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.

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.

Complete Article HERE!

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11/29/16

Children grieve, too

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By Kathy Aney

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.

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.”

Complete Article HERE!

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11/28/16

At 83, this patient advocate is still passionate about end-of-life care in Maine

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Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area -- first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area — first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

By Meg Haskell

EDDINGTON, Maine — Back in the 1980s — not all that long ago, really — hospice was essentially unknown in this country. Death, fearsome and mysterious, was a taboo topic in the health care setting. Doctors, trying to live up to their omnipotent reputations and avoid lawsuits, employed all possible measures to save lives, even when there was little or no hope for a cure, even at the natural end of a long life.

Patients with a terminal diagnosis often were not even told they were dying. They were hospitalized and endured painful, exhausting and expensive interventions instead of being provided with dignity, comfort and support in their final days. Because the focus was on cure, not comfort, their pain and anxiety often were poorly managed. Family members were also kept in the dark and found little support in preparing for loss or responding to grief.

Much has changed over the course of the past few decades. All over the country, hospice care is now a welcome, accepted and affordable model for providing comprehensive comfort and support to the dying and their loved ones while also cutting unproductive spending in the health care system.

While many factors have played into the rise of hospice nationally, no one has been more instrumental in bringing about this critical change in the northern half of Maine than area resident, registered nurse and passionate hospice advocate Patricia Eye.

Eye, a native of Machias who trained at Eastern Maine General Hospital School of Nursing, spent years traveling the globe in connection with her then-husband’s diplomatic career. She found ways to practice nursing wherever they were posted. She had encountered a hospice-like philosophy of care in other countries and while working at a children’s hospital in northern Virginia. It was in Virginia, too, where she first encountered the teachings of end-of-life advocate Elizabeth Kubler-Ross, whose revolutionary 1969 classic, “On Death and Dying,” sought to normalize death and outlined a five-stage process of healthy grieving.

“She was speaking my language about end-of-life issues,” Eye said during a recent conversation at her home. “That’s when I knew what I was going to do with the rest of my life.”

A patient advocate at heart

When Eye returned to the Bangor area in 1981, she encountered a health care community that had barely begun to grapple with end-of-life issues. A group calling itself COPES — no one seems to remember now what the acronym stood for — was meeting at Eastern Maine Medical Center, trying to organize a nonmedical, all-volunteer system of home-based support for dying patients. Beyond that, there was silence on the issue of hospice.

But by the time Eye semi-retired last year, there were at least five agencies delivering Medicare reimbursable hospice services in the Bangor area, helping thousands of residents of all ages live out their days and die peacefully in their homes. Eye has been a persuasive presence throughout this growth period, providing direct patient care, helping organize several of the agencies, working toward all-important Medicare certification and, in 1994, establishing her own agency, New Hope Hospice in Eddington.

“Some people’s personalities just resonate at a level that is deep and reflective,” Kandyce Powell, the longtime director of the Hospice Council of Maine, said. She’s known Eye professionally “for so long I can’t even remember,” she said. “Pat’s heart and soul have always been sensitive to the deepest needs of the people she cares for.”

Despite Eye’s soft-spoken ways and gentle demeanor, Powell said, she has been a determined advocate for the business-side growth of hospice, from the all-volunteer COPES model to a more structured and regulated system that is now paid for and supported by Medicare, Medicaid, veterans benefits and most private insurances. That transition has been critical to the expansion and consistency of hospice care across Maine, Powell said, and its availability to all Mainers regardless of ability to pay.

At the bedside, in the conference room and in policy debates, Powell said, “Pat has always been an advocate, ethically and morally, for the right to die. She has always done what was best for her patients.”

What is hospice?

Hospice, a longtime option in Great Britain and some European countries, is an end-of-life model that promotes the comfort and dignity of terminally ill patients over the possibility of cure. Originally considered an alternative for the very elderly and individuals with incurable cancer, hospice care is now available in this country for patients of all ages with any kind of untreatable, terminal illness.

Hospice provides highly individualized medical, emotional, spiritual and practical support for patients with six months or less to live and for their families and loved ones. Services, both paid and volunteer, are coordinated by the providing agency and delivered in the home, in a residential facility such as a nursing home or in a specialized hospice residence. Additionally, some hospitals set aside space for the delivery of hospice services to inpatients who cannot be adequately cared for at home.

In Maine, approximately 25 agencies deliver home hospice services, including medical and nursing care, clergy visits, social services, nutritional advice, visiting companions and more. Agencies also deliver equipment such as hospital beds, walkers and bedside commodes. Most agencies in Maine are nonprofit. Many are affiliated with larger health care systems; a few, such as New Hope Hospice, are independent.

In addition, there are four residential hospice “homes,” in Auburn, Scarborough, Rockland and at the Togus VA Medical Center near Augusta. A fifth hospice home will soon be built in Presque Isle. Greater Bangor doesn’t have one.

The artist's rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

The artist’s rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

An ‘evangelist for hospice’

It was not always like this, according to Sr. Mary Norberta, the former president and CEO of St. Joseph Healthcare in Bangor. Now retired and living in Connecticut, Norberta recalled that the Catholic organization in the early 1980s investigated the possibility of establishing an inpatient hospice unit at St. Joseph Hospital. Without a reliable funding source, it couldn’t work.

“We decided a home-based volunteer program would be more financially feasible and reach more people,” she said. Eye, who had been working on the cancer unit at EMMC and meeting with the COPES group there, moved over to St. Joseph to help set up the home hospice program.

“Pat and [social worker] Sr. Mary Romuald were the pioneers,” Norberta said. “They would trade off night shifts to sit with patients in their final moments.” In addition, the two recruited and trained a dedicated cadre of volunteers to help support patients and their families.

In those early days, Eye was persistent in telling patients the hard news of their terminal status, sometimes against doctors’ wishes. Patients must understand their condition in order to enter hospice care.

“She had tremendous compassion and she was never pushy about it,” Norberta said, “But she was always able to tell people the tough things they needed to hear.”

Dr. Toby Atkins, a primary care provider in Bangor for about 40 years, was also part of the hospice startup at St. Joseph Hospital. He recalled that there was early confusion about the role of hospice workers, who, unlike home health nurses, aimed to keep patients home instead of sending them back to the hospital when their conditions worsened.

“The whole idea of the ‘do not resuscitate’ order was just getting developed,” he said, and some health workers, including visiting nurses and ambulance crews, refused to honor it. Atkins, who now serves as the medical director at Community Health and Counseling Services in Bangor, said Eye was key in educating doctors, nurses and other providers about the intent and the importance of the DNR order, which allows terminal patients to die naturally without the trauma of medical interventions aimed at “saving” them.

“Pat was a real evangelist for hospice,” Atkins said. “She got right into her patients’ lives and provided lots of support, lots of services.”

Still looking ahead at 83

In 1984, Congress directed the federal Medicare program to pay for hospice care. With guaranteed funding — and no small amount of regulation and oversight — provider agencies have since blossomed across the country. Hospice, not long ago a controversial, hard-scrabble, grass-roots effort, is now a well-established and respected player in the national healthcare system.

These days, Eye lives with her son John, 52, and a menagerie of geriatric dogs and cats in a comfortable old farmhouse in Eddington. At 83, she remains active in her chosen field, providing community outreach and clinical support for New Hope Hospice.

She has weathered some deep sorrows. She lost her 58-year-old daughter, Connie, to cancer last year. Another child, her son Lance, suffered with mental illness and took his own life, years ago, at age 28. Her marriage ended in divorce in 1985.

But she has blessings, too. She had a leaky heart valve repaired recently but is otherwise in good health. She is close with her other daughter, Kitty, a nurse who works locally in long-term care.

She enjoys her life, her family, her home and all the pets — “They’re all rescues and strays,” she said — who share it with her.

And she continues to love her work. “To do this work, you cannot help but be close to God,” she said.

Thanks to all the traveling she did in the first half of her life, she feels at ease with many world religions. “It doesn’t matter. We all have the same god,” she said. “Religion really just gets in the way.”

If she has a burning wish, it is this: to see New Hope Hospice build the residential care facility she envisioned when it first opened for business.

“My theory is that every community should have a small, inpatient hospice home,” she said firmly, “even if it’s just two beds.”

She produced an architect’s drawing of an eight-bed, bungalow-style home. “We already own a lovely piece of land for it,” she said, brushing off the dust. “ And there’s such a need in this area. It’s just a matter of finding the money.”

And with that, it’s clear that nurse Pat Eye is still advocating for her patients, still intent on identifying and serving the end-of-life needs of Eastern Maine.

Complete Article HERE!

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11/28/16

Humanist funerals: Finding meaning without God

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It’s no secret that British society has become decidedly less religious over the last 50 or so years. According to research by NatCen, just under half of adults in England and Wales define themselves as having no religion.

The funeral has traditionally been a religious affair, with a great proportion of the service dedicated to prayer and worship. But now, in a more secular age, humanist funerals are beginning to emerge as a popular choice for those who don’t follow a religion.

What is humanism?

“Humanism is a life philosophy, an umbrella term for atheist, agnostic and non-religious people,” explains Isabel Russo, head of ceremonies at the British Humanist Association. “Atheism can be seen as a very negative life stance by some, but humanism is a very positive life stance. It is based on the philosophy and the belief that we can be good without God.

“It’s a thought-through position that the meaning of life is to be happy and to help others be happy. We live by the golden rule ‘do unto others what you would have done to yourself’. It is a positive outlook on how you can be a moral, ethical person without any supernatural being guiding your behaviour.”

What is a humanist funeral?

“In religious funerals, God is in the spotlight, but in the humanist funeral God is absent,” Isabel explains. “Instead, the spotlight is on the person who has died. The funeral is centred around them, around their life, around the people who were important to them. The funeral acknowledges their life in all its light and dark, in all its glory.

“Humanist funerals can be a lot more frank in a way. We can be honest about the challenges that person faced and acknowledge their journey, whether they overcame those challenges or not, because not overcoming those challenges makes them human.

“We’re not deifying that person, we’re not trying to save their immortal souls, or to commit them to God and make them worthy of God. We say, ‘This is the person we loved, these are their achievements, these are the people they cared about, these are the things that made them laugh, these are the things that made them cry, these are the challenges they faced.’ So, really it’s about remembering the person in a really whole way.”

Can a humanist funeral be meaningful without God?

If you are used to attending religious funerals, you might be unsure whether a funeral without mention of an afterlife can be as meaningful. But, Isabel says, there is powerful meaning in the act of saying goodbye and remembering the life of the person who has died:

“The challenge of a humanist funeral, but where it is also successful, is being able to walk the line of being a genuinely sad occasion, where you are acknowledging that you are really letting go of someone – because we don’t believe that we’ll see them in heaven again – and at the same time remembering who they were for us, and who they’ll always be for us.

“Of course, for a religious person it will always lack that ultimate meaning for them, because God isn’t mentioned. We would never want to do a humanist service for someone who is religious. We want everyone to have the ceremony that is right for them. However, for a non-religious person it does have that ultimate meaning, because for them life is about life itself, not the afterlife.”

That said, Isabel says that a humanist funeral can be a meaningful experience for religious mourners who attend. She told us about a funeral she conducted for a man who was an out-and-out atheist, but whose wife was religious.

“There were people who were religious who spoke in the service, and there was nobody who came up to me at the end and said it wasn’t meaningful. Everybody, including the religious people, said, ‘That was so meaningful, that was so him, you allowed us the space to laugh and to cry, and to reconnect with who he was for us.’ In a funeral ceremony we always give time for reflection which, we explain, can always be used as time for private prayer.”

Humanist funerals often incorporate elements of ‘alternative’ funeral ideas, such as bright colours, weird and wonderful themes, and other non-traditional aspects such as balloon releases, eco-friendly burials and fireworks. But this doesn’t mean the funeral services are frivolous or light-hearted. On the contrary, the meaningfulness of saying goodbye is central to the humanist service.

“We’re very much in support of that creativity, but also in support of it being rooted in the profound experience of saying goodbye,” Isabel says. “It’s even more important for humanists, because we don’t believe we’re going to be meeting them again in the afterlife. You really are saying goodbye.”

“In a religious ceremony you’re committing the person to God, but in a non-religious ceremony, we like to see it as you’re committing that person’s memory to your heart. That is not to say that it can’t be full of joy, and laughter, and bright colours, but it’s just always remembering that at the heart of it, it’s a very profound thing you are doing.”

How to plan a humanist funeral

If you’re considering a non-religious funeral for your loved one, Isabel recommends working with a humanist celebrant you can trust. Currently there is no regulatory body overseeing the training and accreditation of humanist celebrants, but organisations such as the British Humanist Association have their own quality assurance and training programmes for celebrants.

“The world of funerals and death is just opening so much more, which is great,” Isabel says. “People have more choice now, so I would encourage people to shop around. You can ask questions and find the person who is right for you.”

Your funeral director will be able to help you get in touch with a non-religious celebrant, or you can find an accredited humanist celebrant near you via the British Humanist Association’s website.

Complete Article HERE!

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11/27/16

The holidays: perfect storm for those who grieve

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By Steven Kalas

facing-grief-during-the-holidays

You first feel the breeze of it a few days before Halloween. Like that subtle sense that the barometer is dropping. Like a tide is ever so slightly beginning to turn. Something changes in the air. Excitement dances with dread.

The momentum is exponential. Inexorable. Faster and faster, and there’s nothing you can do about it. Planning. Shopping. Cooking. The post office. Parties, and then some more parties. More shopping. More cooking. Oh, and drinking. Time to drink some more!

It begins as a trickle and ends in a perfect storm: The Holidays.

Human beings invest huge chunks of meaning in the rhythm of late November and December — the days of Thanksgiving and Christmas. Entire family histories are defined chiefly by holiday memories, for better or for worse.

Which is why about this time of year I always find myself thinking of grieving families — families looking down the barrel of the first Thanksgiving and first Christmas season without gramma or grandpa, without a son or a daughter, without a wife or a husband, without mom or dad.

You see them everyday/ They wear the bravest face/ They’ve lost someone they love/ They are the grieving ones

For most us, The Holidays promise warmth and joy, if some harried stress. For grieving families, the First Holidays threaten great darkness. Those families often ask, “How do we get through the holidays?”

So here’s an early holiday gift to bereaved families facing the First Holidays. A quick primer of ideas in service to hope and healing.

Predict Sadness

The surest way to make things feel awkward and dark and difficult is to try to make them feel normal. To “put on a cheery face.” To make sure everything stays the same. See, nothing is normal. Someone you love is dead. They aren’t there. Nothing is the same.

Expect tears to flow in the midst of smiles and grandkids and gravy and gifts. Don’t be surprised when conversations lull or silence lapses. Don’t resist these moments; rather, cherish them.

Take a few moments for yourself. Step out on the back porch or into the backyard. Include a trip to the cemetery or crèche, alone or with family members. Light a candle in a house of worship, or otherwise participate in a religious observation.

Say the name of your deceased loved one out loud.

Symbolic Transfer

Was there a particular niche the decease occupied in the family? Especially around the holidays? If grandpa was known for making his famous stuffing recipe, then gramma might consider giving that recipe to the oldest son, or to a favorite grandchild. Make a dramatic presentation out of it: Would he/she now do the family the honor of preparing and bringing this dish?

Perhaps a dead brother became an Eagle Scout. Mom, Dad — why not wrap that Eagle badge as a gift to the surviving brother? Did grandpa put himself through college as a pool shark? Pass the cue stick into someone’s care.

Symbolic absence

I know a family who set a place at the Thanksgiving table for the deceased husband/father. On the back of the chair they hung the man’s raggedy fishin’ hat. Another family laid a high school letter sweater across a chair around the Christmas tree. Still another family cleared a living room tea table and created a sort of shrine to a deceased child: a photo montage, Hot Wheel car, superhero action figures, etc.

You’ll be surprised how not depressing this is. Sobering, moving, powerful, comforting — but not depressing.

Symbolic Upending

The First Holidays are a good time to introduce new traditions and practices. Instead of turkey, serve prime rib for Christmas dinner. Open gifts Christmas Eve instead of Christmas Day. Or you can get really radical, like the bereaved family I know who vacated for Christmas and all went skiing in Utah. Opened their presents around a fireplace in a ski lodge.

The point is that death leaves nothing the same. Some families find a kind of peace in holiday observations that reflect this radical change (rather than trying to pretend nothing has changed).

Yes, entire family histories are shaped by memories of the holidays. And great family histories include the history of death. This pain, this ache — it’s forming you. Shaping you. Changing you. And, if you’re willing to endure, this grief will make you more.

Grief is a noble art/ Each tear will stretch your heart/ There’s more room now for love/ God bless the grieving ones

Complete Article HERE!

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11/26/16

Facing loss

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Tips for coping with grief during holidays

by Zirconia Alleyne

feelinggriefpf

Let’s face it – shopping for the perfect Christmas gift can be burdensome and even stressful for many people.

The holidays are difficult. Whether you’re trying to decide which in-law’s house to go to for Thanksgiving or how to afford the latest tech gizmo for your trendy teen, getting through the whirlwind of winter holidays is not easy on anybody. Add to the merry madness the loss of a loved one, and coping with grief during the holly-jolly season no longer looks like the best time of the year.

Karen Cantrell, president of the local chapter of The Compassionate Friends, said grieving is especially difficult during the holidays. The self-help grief support group focused its November meeting on tips for getting through the holidays without your loved one. Cantrell offered the following tips:

1. Know that the holidays are going to be painful no matter what. “Facing it squarely and planning what you do and do not want to do during that time is important,” Cantrell said.

2. Be easy on yourself and don’t put on too many expectations. “The main thing is just managing how you do things and not being afraid to ask someone to help you in decorating, cooking and holiday shopping,” she said. “It can be difficult getting out into the stores with the happy Christmas music if you’re dealing with the loss of a loved one. It can overwhelm and stress you; maybe do more online shopping instead.”

3. Change traditions if you want. “Instead of having Thanksgiving at your house, have it at someone else’s house – just change it up a bit,” she suggested.

Cantrell lost her newborn grandson, Caiden Eli Cantrell, in 2009. He was 33 days old.

“It was my son’s son, and my first grandchild,” she said. “I focused more on trying to support my son and his wife, trying to be the strong one, and about four or five months down the road, I realized I couldn’t handle it all by myself. I called the Pennyroyal Center and Mary Foster told me about The Compassionate Friends.”

The group will host a candle lighting ceremony and potluck dinner at 6 p.m. Dec. 13 at Christian County Baptist Association Building, 905 North Drive. Anyone who is grieving or offering support to anyone that is grieving is welcome to attend and light a candle in memory of their loved one.

Cantrell said keeping your loved one’s memory alive helps tremendously. She suggested hanging a special ornament for the deceased or making a donation to a charity in their honor.

“My little grandson was a baby so he didn’t get to share a Christmas with the family, but me and my other grandchildren go to the cemetery and light a Christmas tree and sing Christmas carols,” she said. “I myself like doing the Angel Tree because I couldn’t give gifts to him, so I bought those gifts and donated them to another child.”

Cantrell said it’s important to recognize that everyone grieves differently. She encourages friends and family of those who are grieving to allow them to do so.

She also said give them time and space to talk about the deceased if they want to.

“Listen,” she said. “Let them talk and do not try to offer any solutions because there’s really not anything one can do other than listen and be understanding.

“People think if you mention (the deceased’s) name you’re going to remind them, but you’re going to remind them that you think of them and loved them as well — that is a gift in and of itself.”

Cantrell said offering to help wrap gifts, cook or go with them Christmas shopping may be comforting.

“It just says, ‘Hey, I’m thinking of you.’”

Overall, Cantrell said give yourself permission to grieve, especially parents.

“It’s especially hard when you have other people depending on you, like children, and you’re trying to keep [the holidays] as normal as possible, but that’s when you’ve got to ask loved ones and friends for help.

“You can’t run from the grief,” she said, “eventually you’ve got to come back to that, but just facing it head on and talking about it with your family, about traditions you want to change, keep or skip, will help you get through it.”

Complete Article HERE!

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11/25/16

Against the Dying of the Light

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Did you know that your patient in 1152 just passed away?

 

Krishna Constantino

Krishna Constantino

Everyone at the nursing station turned silent and looked at the nurse who had delivered the news. I looked at her in disbelief, my brain struggling through a fog of confusion and surprise. I squinted at my patient list trying to remember who was the patient in 1152. Recognition finally hit and I remembered the little old lady that we saw during rounds two hours ago. I remembered gazing at her frail, tiny body and her pale, listless face and how we tried to communicate with her to no avail. We knew she had a Do Not Resuscitate (DNR) status and we knew she was really sick, but we had no idea it would happen so quickly!

Since there was no response from either me or the intern that I was following, she mumbled a hasty, “I’ll go call the family,” and left. I looked at my intern for guidance and I saw that he was staring at the floor, hands resting on top of his knees. It was a surprise for me to see him like this, far removed from his usual confident manner. Death had completely floored us both.

Doctors and other medical professionals have a more frequent and intense contact with death and dying compared to the rest of society creating a need for end-of-life care in medical curricula. However, multiple studies on medical students’ reaction to death show that most medical students feel inadequately prepared by their undergraduate medical curricula for experiences related to end-of-life situations. Death is introduced early in our medical training inside the gross anatomy lab. The absence of any identifying features made those hours spent in anatomy lab easier. Death takes its toll and what is left is an empty husk where a person used to exist. After anatomy lab however, there is very little exposure to the idea of death and dying. A survey of medical students from Duke University showed that the average medical student had experienced fewer than five patient deaths prior to graduation. In addition, few students experienced how to declare a patient dead and none received any formal training on this end-of-life skill.

I, on the other hand was not destined to be part of that statistic. After what seemed like an eternity, my intern rose up from his seat and dashed to another part of the hospital to seek out his senior. After discussing the turn of events and the necessary course of action, our little group convened in front of the door of the patient’s room where I received my first education on the procedure of declaring a patient death.

I lingered close to the door with a bit of trepidation. She was laying in the same position that I had last seen her two hours ago — face to the window, eyes closed. Her mouth was slightly open and for a moment, I merely thought that she was asleep.

First, we need to check for reflexes. In here, we use two: the corneal reflex and the gag reflex.

I watched in silence as both the resident and the intern performed these tests — all without a response. I watched as they both tried to feel a pulse. I watched with bated breath against all hope that there was still life ebbing underneath those veins. I let it out, deflated when both of them shook their head no.

As soon as we walked out of the room, I overheard my intern echo the exact same thought in my head. “Do you think we did anything wrong?” A hundred what-ifs welled up inside me. Was there truly anything we could have done to prevent this death? Modern medicine views death as something that can be resisted, if not avoided. This view of death is further compounded upon by modern society’s view of death which delegates all responsibility to physicians. While it is widely accepted that death is inevitable, it is the physician’s task to ensure that the patient is as far removed from death as possible. As Rudyard Kipling in his address to the medical school of Middlesex Hospital stated, “Death as the senior practitioner, is always bound to win in the long run, but we patients, console ourselves with the idea that it will be your business to make the best terms you can with Death on our behalf; to see how his attacks can best be delayed or diverted.” Little wonder that throughout medical education, death is continually seen as a failure.

Although medical schools are now integrating end-of-life care in its curricula, medical education should also engage students in a frank discussion of death and dying. Only by facing death head-on do we dissipate its power over us. The fear of the unknown has always been part of death’s icy grip over us but what if we learned to “disarm him of his novelty and strangeness, to converse and be familiar with him” as Michel de Montaigne recommended many centuries ago when death was commonplace and lifespans were short. Had I chosen to avoid that room, I would have missed out on one of the most important lessons in my medical education.

Each one of us has ideas surrounding death. I have always imagined death to be more dramatic than what I had experienced. In my mind, I keep seeing an entire healthcare team running back and forth — all working together to snatch the patient away from the jaws of death. However, my patient simply slipped away quietly, almost underhandedly. The way that she passed away seemed natural — as if she were merely falling into an eternal sleep. Gone was the drama, the action, the struggle for life. In its place was peace and acceptance of the inevitable.

This in turn gave me reason to think that perhaps, death is not a failure of medicine but rather a crucial part of being alive. Oftentimes, the best lesson in learning how to live is learning how to die as we see in the works produced by the likes of Oliver Sacks and more recently, Paul Kalanathi. As surgeon and Yale professor Sherwin Nuland wrote, “We die, in turn so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.”

Complete Article HERE!

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