[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.
In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.
This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.
In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.
Local hospitals are extremely under-resourced
My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.
In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.
That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.
The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.
The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.
Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.
Providing palliative care at home means patients can remain in their community
It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.
These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.
There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.
Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.
Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.His family wait outside his hut
Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.
Ndi Moyo grows herbs as an affordable way to help their patients:
Lemon grass helps patients excrete toxins
Aloe is a good balm for wounds and acts as a useful laxative
Artemisia has powerful immunity-boosting properties
Papaya sap is useful as an antiseptic
Vinca rosa lowers the white blood cell count
Source: Ndi Moyo
Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.
I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.
Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.
Shelley Duffin and her father reflect on her mother’s passing through assisted suicide which occured in Switzerland due to narrowly being denied the right in Canada.
Sometimes, Shelley Duffin will make a batch of cookies and think, “Okay, I’ve baked.” And then she remembers what a day of baking meant for her mother, Ruth: a few pies, maybe a loaf, muffins, scones, cookies, Chelsea buns with raisins—a mountain of fresh treats piled up when her kids and husband arrived home after her day off. There would be pounds of butter stacked in the freezer like gold bricks, ready for next time.
Ruth was the grandmother down on the floor playing with her grandkids—five granddaughters and a grandson—letting them play dress-up with her clothes or dishing out hands of Go Fish. It was important to her always to look well put-together; setting her hair with a curling iron was a must. It pleased her when people complimented her appearance. But in the last few years, as Parkinson’s disease took hold, if someone said she looked nice, she would joke darkly, “I’d like to bop them, because I don’t feel good.”
Bit by bit, the disease that caused her limbs to bounce with tremor forced her to make accommodations in order to do the things she loved, and then made them impossible. So at exactly the same time as Canadian lawmakers, doctors and citizens were grappling with the Supreme Court decision permitting doctor-assisted death last spring, Ruth decided that she wanted to die. “For many years, I was able to manage as the disease gradually whittled away at the things I held dear,” she wrote in a letter. “I am now at the point, however, where there is nothing I look forward to except an end to my suffering. I have gradually lost all of myself.” But while Ruth, her family and her doctors felt certain that she qualified under the criteria of the Supreme Court decision, the narrower legislation shaped by Parliament appeared to exclude her. And so she, like an untold number of other Canadians, made an excruciating decision to travel to Switzerland to seek assisted death, in the shadow of a new Canadian law that appears to offer little clarity even to the people accessing and enacting it in the most dire circumstances.
Ruth Duffin was a stay-at-home parent when Shelley and her older brothers, Paul and David, were growing up in Dundas, Ont., a town of 11,000 on the edge of Hamilton. Later, she managed the greeting-card section in a drug store until she retired in 2006. The year after she retired, Ruth suffered a transient ischemic attack, or “mini-stroke,” and the tremor began soon after. Her doctor diagnosed her with Parkinson’s disease in 2008, and she was put on a range of medications to try to control her symptoms.
At first, she could fit her life around her illness. She and her husband, Richard, went on several cruises, and closer to home, they loved to play the penny slots at a racetrack in Hamilton or visit Fallsview Casino in Niagara Falls for shows and meals. Ruth timed her baking around tremor-free times of day, then Richard became her devoted sous-chef when she needed more help. Eventually, the baking and outings stopped.
Ruth’s tremors were increasingly difficult to quell even with escalating dosages of medication. “Because she was shaking so much, it was just like a workout,” Richard says. Pain radiated through Ruth’s back and shoulders, and she would become overheated from the exertion. In the early days of her disease, the family called Richard “the Parkinson’s whisperer” because he could hold Ruth’s hand and calm the tremor. But that didn’t work anymore. All the things that had given Ruth pleasure, including their travels, fell away. “After that, she said she couldn’t do it anymore. I said okay,” Richard recalls, gasping back a sob. “She just deteriorated.” Ruth left the house very little and fretted about their three-day Christmas visits to Shelley’s family in Ottawa, each year insisting she couldn’t go again. “This year was the final year,” Shelley says of 2015. “I believed it—I knew there wouldn’t be another.”
A photograph of Shelley Duffin’s mother and father hangs in her home. Shelley and her Father reflect on her mother’s passing through assisted suicide which occured in Switzerland due to narrowly being denied the right in Canada.
Last March break, Shelley took her two young daughters to Dundas. One night after the girls were in bed, Ruth was lying on the couch when she said, “Shelley, this is no way to live.” Shelley replied, “I know it’s not, Mom. Tell me what you want, I’ll do anything.” Ruth said, “There’s nothing you can do.” Not long after that visit, Ruth was seized by a tremor that lasted 11 hours. That pushed things into crisis: after that, each time a tremor began anew, she was consumed by anxiety about how long it would last.
That weekend—Easter weekend—Ruth had her sister over and then her son, Paul, and his wife, and told them she wanted to end her life. She’d long since stopped having phone conversations because they were too difficult, but she spoke to Shelley on Easter Sunday, telling her she loved her and she wanted to die. Shelley was taken aback, but not shocked; she had seen how bad things were. “Do I need to come now?” Shelley recalls asking her father. He assured her nothing was imminent, but two days later, he called in a panic: Ruth was suddenly talking about desperate measures like walking out of the house to step in front of a transport. Shelley got on a train the next morning.
To cope with her feelings of helplessness since her mother’s phone call, Shelley had started researching the current state of doctor-assisted death in Canada. She contacted Dying With Dignity and End of Life Planning Canada, a sister organization that handled advice and support for patients and families. When Shelley arrived in Dundas, she and her parents had a clear-eyed talk about Ruth’s options. Voluntary stopping of eating and drinking (known as VSED) was the only realistic legal option until the law changed, but they agreed that wasn’t palatable: it seemed like a horrible, drawn-out way to die. A few years before, Shelley had done some research on the Dignitas assisted-death organization in Switzerland, thinking it may be a consideration in their future. But when she brought it up now, Ruth wouldn’t hear of the idea—she was concerned about the cost to her family.
And so their entire focus became June 6, when Canadian law would change. Under the parameters of the Supreme Court decision, it seemed certain to them that Ruth would qualify: she was mentally competent, had an irremediable medical condition and was suffering intolerably. They just had to make it to the deadline on the Supreme Court decision, when the law prohibiting assisted death would expire. “We just needed a plan to get to June 6,” Shelley says. They decided Ruth would make an effort each day to go for a walk or just sit in the sun, and they would meanwhile talk to her family doctor and get in place all the necessary approvals so that when the law changed, they were ready.
Before Ruth told her family members, she had discussed her desire to die with Richard several times. It was brutal for him, but he understood: everything that had given shape and joy to her life was gone. “She just suffered so much,” he says. “I tried to look after her the whole time and I just couldn’t do nothing.” The nights were the worst, when the tremor made all but a few hours of sleep impossible and Ruth would beg for another pill hours before her next dose was due.
Over the next month, Ruth was hospitalized twice; doctors first increased her medication to better control her symptoms, then backed off the dosage when she appeared to suffer paranoid delusions as a side effect. When she was discharged, they were given generous homecare, but when a bed came up in a long-term care facility, she would have to take it or lose the in-home help. Ruth abhorred the idea, so they simply hoped a place wouldn’t come up before she could end things on her own terms.
In the meantime, Ruth had a productive conversation with her family doctor. On June 6, the law prohibiting assisted death in Canada expired with the Supreme Court deadline; Parliament was still debating the legislation, so the parameters of the court’s decision applied in the interim. The following day, Ruth formally made her request for assisted death to her family doctor.
But 10 days later, before she and her family could work through all the paperwork, the House of Commons rejected an amendment the Senate had insisted on, which would have made assisted death available to those whose demise wasn’t “reasonably foreseeable,” and sent Bill C-14 back to the Red Chamber. “What the government of Canada has said is: ‘You have a right to medical assistance in dying if you’re suffering from those conditions and have up to a few months to live, but if you’re going to be suffering that way for a few years, we aren’t going to give you that right,’ ” Kelvin Ogilvie, co-chair of the special joint committee on physician-assisted dying argued on the Senate floor. “I submit to you, for all of the arguments we have heard about the importance of the Charter of Rights protecting minorities and the vulnerable, that is the most vulnerable situation that any Canadian could find themselves in.”
The Senate chamber on Parliament Hill in Ottawa on Thursday Jan. 13, 2011.
At work, Shelley listened to audio from the Senate on her computer. As she heard the votes piling up, she kept thinking there must be more senators than she realized, because she was so sure they would stand their ground. But the Senate ceded to the House, and the bill passed. Justice Minister Jody Wilson-Raybould’s office says now that the law “represents the right approach for Canada at this important time in our country’s history,” adding, “The legislation was carefully and deliberately crafted as a cohesive, responsible and balanced regime.” Instantly, Shelley was sure her mother wasn’t eligible. She left her office and went for a walk, sobbing. That night, she called her parents to explain that the window of opportunity had closed. “That was the worst weekend, I think, of our lives,” Shelley recalls. Now, out of necessity, Ruth was willing to consider Switzerland.
The wait for an appointment for assisted death in Switzerland is typically three to four months. Ruth was past desperation, so Shelley moved rapidly, setting up memberships in two organizations, Dignitas and LifeCircle. “I had explained the situation: ‘We don’t have time, my mom is talking about how she wants to step in front of a bus,’ ” she says.
In the meantime, in early July, a bed came up and Ruth moved into a long-term care facility. She needed help to move around or even eat; for the fastidious woman who had curled her hair each day before she left the house, it was too much.
All documentation was sent to the Swiss organizations; Ruth’s membership and request for assisted death were approved, which meant simply waiting for an opening. In late July, Shelley got an email from Ruedi Habegger, a volunteer with LifeCircle. There had been a cancellation and an appointment was available on Aug. 18. Ruth told them to take it. “It wasn’t fast enough,” says Shelley. She booked flights for the three of them immediately (they estimate the trip cost $28,000 in total, including fees from the Swiss organizations). As the days and weeks went by, Ruth would tell Richard, “I’ll never make it,” and asked how much longer. He would tell her the number of days until they left to make it seem shorter or simply say, “You don’t want to know, dear. A few days.”
They had a “hellish” trip that left no time for thinking about the larger reality: that if everything went according to plan, only two of them would make the return trip. Waiting in the lounge for their flight to Zurich, Ruth was seized by a terrible tremor; they dipped napkins in water, trying to cool and calm her. “We were just in constant crisis,” Shelley says. “Because we’d had so many roadblocks, I couldn’t believe any of this was going to happen.” On the flight, they were seated in pod-like business-class seats, making it difficult for Shelley and Richard to help Ruth. She had a moment of muscle rigidity when it was time to exit the plane, and the flight crew had to virtually carry her.
The June 17, 2009 file photo shows a house in Pfaeffikon near Zurich, Switzerland, where the medically assisted suicide organization Dignitas accompanies people, willing to die, into death since July 1, 2009. British conductor Edward Downes (85) and his wife Joan (74) died Friday “peacefully and under circumstances of their own choosing” at the assisted suicide clinic run by the group Dignitas, their family said Tuesday, July 14, 2009.
Habegger picked them up at the airport in Zurich. Ruth was exhausted from the trip and beside herself with the pain and exertion of the tremor. “Driving the car, I had tears in my eyes,” Habegger says. “I’ve never seen somebody suffer so much.” Swiss authorities require approval from two doctors in Switzerland who see the patient, so Habegger drove them directly to the first doctor, in Zurich, and the second came to see them in their hotel room in Basel. Shelley and Richard were worried that something might have gone wrong in adjusting Ruth’s medication to the time difference, and if she suffered side effects, it might look like her competency was in doubt. But Ruth was lucid and eloquent. “I shouldn’t have to travel to Switzerland to achieve this,” Shelley recalls her telling one doctor. “This is just wrong.”
The following day, the anesthesiologist who would be assisting in Ruth’s death called their hotel and said he wanted to meet them. When he arrived, Ruth was laid out flat on the bed, rocked by tremor, demanding help immediately. Shelley was panicked by the awkward, stressful conversation, certain everything was about to fall apart and somehow the third doctor would doubt her mother’s competency, but he took it in stride.
The final night of Ruth’s life, her tremor and the radiating misery it caused kept the three of them up all night. Ruth kept insisting, “I’m not going to make it,” and Shelley kept reminding her that she’d survived months she didn’t think she could endure, and there was just one more night to go.
For outsiders who travel to Switzerland to die, LifeCircle maintains a suite of rooms in the industrial town of Liestal, just south of Basel. Over the half-hour drive with Habegger behind the wheel, Shelley and Richard noticed Ruth’s tremor stilled, and a calm they hadn’t seen in a long time settled over her. “She was finally getting what she wanted,” Shelley says. “I think she felt at peace, because there were so many things that should have set off that tremor.”
When they arrived, it was just the three of them, along with the anesthesiologist and Habegger. First, there was all the official paperwork to fill out, then they moved into the comfortable room where Ruth would die. The anesthesiologist set Ruth up in a bed and put an IV line in her arm, then filmed her answering competency-confirming questions like her name, where she lived, why she had come there and what would happen when she turned a valve on the IV line. “When they laid her on the bed and they put the intravenous in her arm, she seemed to be relaxed,” Richard says. “She knew it wasn’t going to be too long now.” He and his daughter sat with Ruth, holding her hands. They told her what a wonderful wife and mother she was, and that they would miss her terribly but they were here with her. She told Shelley she would miss the kids.
With Habegger recording everything to present to the authorities afterward, the anesthesiologist connected the sodium pentobarbital to the IV line. When Ruth was ready, with Richard holding one hand, Shelley at her shoulder and Habegger laying a hand on her other shoulder, she activated the valve that sent the drug into her veins. In seconds, she relaxed and fell into sleep; within a few minutes, around 10:30 a.m., her breathing slowed and her heart stopped. “She was surrounded by love and calmness,” Shelley says.
At first, Richard and Shelley simply did what they’d been doing all along: they stayed by Ruth’s side. Eventually, the police, coroner and a medical-legal body were called to confirm her death and ensure everything had been done legally. While they waited, Shelley lay down on a couch near her mother’s body and dropped away into the best sleep she’d had in a long time. When she awoke, she made tea for Richard and they waited while the police verified everything; each time he left the room, Richard checked on Ruth. Once everything had been cleared, the anesthesiologist offered to drive them back to Basel. Habegger stayed behind with Ruth’s body to finalize all the legalities.
In the car, Shelley, Richard and the doctor talked about his work with LifeCircle, and he told them it had been helpful for him to see Ruth the night before he helped her die, so he understood her suffering. He stopped at the train station and helped them navigate a German-language machine to order tickets to the airport the next morning. Before they said goodbye, Shelley fetched her mother’s walker from the hotel room; she gave it to the doctor to pass along to Habegger, who was going to find someone who needed it.
Shelley doesn’t carry a smartphone, so it wasn’t until late afternoon back at the hotel that she contacted her brothers to tell them Ruth was gone. She and her father were exhausted; they set an alarm that would wake them to pack their bags, and fell asleep. They had booked a return ticket for Ruth just in case something went wrong. When they woke, Shelley emailed her former sister-in-law, a travel agent, to cancel Ruth’s ticket; there would be nothing to explain to the airline.
When they flew home, Shelley went back to Dundas with her father, then returned to her family in Ottawa the following day. Before she left, she had simply told her daughters, age eight and six, that Grammy was not doing well and she was going to help. When she came home, they asked how she died, and Shelley said she went to a place for people who are ready to die. They haven’t asked any more than that.
There are no current statistics on the number of Canadians like Ruth who have travelled to Switzerland to die. A 2014 study found that between 2008 and 2012, 12 Canadians did so; work is just beginning on an update to that study. Habegger says that in the 18 months before C-14 came into effect, 12 Canadians ended their lives with LifeCircle, which is a small and relatively new organization. Since the Canadian legislation came into effect, five more Canadians have died with the help of the organization, and they expect 20 more over the coming year.
Both the restrictiveness of the Canadian law and the vagueness of the “reasonably foreseeable” language was criticized by senators who resisted including that clause, and by other critics of C-14 who saw it as incompatible with the Supreme Court decision. Wilson-Raybould’s office, however, now says the ambiguity was deliberate to give flexibility to doctors and nurse practitioners assessing patients, and it “does not impose any specific requirements in terms of prognosis or proximity to death.” The justice minister’s office adds, “It therefore extends eligibility both to those with fatal diseases that progress rapidly and linearly, such as those with a prognosis of six months or less, and to those with conditions that deteriorate unpredictably over a longer period of time.”
But that was certainly not clear to Ruth, her family or her doctors. They continued working to get the two required physician approvals in Canada even after the law passed, simply because the wheels were in motion and so many things had already not worked out. Ruth’s family doctor wrote a letter stating that she was “willing to help with her request,” but as the law required a patient’s death to be “imminent” and Ruth was not at that stage, her hands were tied. “This law will be challenged in court over the next period of time,” the doctor wrote. “Unfortunately, at this moment in time, I cannot assist Ruth in this process as I have to act in accordance with the law.” A second doctor interpreted “reasonably foreseeable” differently and gave his opinion that Ruth did qualify. The Duffins couldn’t get an appointment with a third doctor who may have approved her request until September, a month after Ruth finally ended her life in Switzerland.
She didn’t want a funeral or memorial service, and Shelley didn’t want her father having to answer for his wife’s decision, so they simply put an announcement in the paper, directing donations to Dying With Dignity. “I haven’t got any patience any more for people who don’t accept this,” Shelley says of people who question her mother’s choice. “If you don’t agree, that’s fine—just like there are abortion laws you may never use, you don’t have to avail yourself of it. It does not devalue your life that my mom has an opportunity to be able to humanely end hers.”
They’re not people who like to put themselves on public display, she says, but they’ve shared their story because they are so disturbed that other people are suffering who should have an option according to the Supreme Court, but are apparently excluded by the law. “To be crass, if you’re dying, you have an out. Your curtain is falling,” Shelley says. “My 70-year-old mother was looking at these crazy, violent ways she could kill herself. She shouldn’t have been reduced to that. My dad shouldn’t have had her asking him, ‘Just tell me how I can die. Give me the pills. Give me anything.’ ”
Richard asks Shelley sometimes if she misses her mother or if she’s grieving. The way Shelley looks at it, to really feel grief, you have to open yourself up to it, and she hasn’t quite done that yet. She’s still so relieved that there isn’t much room for mourning, but sometimes in moments alone, she’ll chat with her mother.
Richard did a lot of crying on the flight home from Zurich. Since then, he’s washed all of Ruth’s clothes and put them back in her drawers and closet. “I didn’t want her to die, but what can I do? She couldn’t live like that, and I know it’s what she wanted,” he says. “It was no life for her. She lost everything. I miss her.”
About six weeks after she died, he received Ruth’s ashes in the mail from Switzerland; Habegger had offered to bring them next time he visited Canada, but Richard wanted them with him as soon as possible. Next summer, the family will scatter them at Sauble Beach, where they spent a lot of happy days over the years. For now, though, they sit on the dresser. Richard talks to Ruth all the time, the way he used to.
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, 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.
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.
“Did you know that your patient in 1152 just passed away?”
Krishna Constantino
[E]veryone at the nursing station turned silent and looked at the nurse who had delivered the news. I looked at her in disbelief, my brain struggling through a fog of confusion and surprise. I squinted at my patient list trying to remember who was the patient in 1152. Recognition finally hit and I remembered the little old lady that we saw during rounds two hours ago. I remembered gazing at her frail, tiny body and her pale, listless face and how we tried to communicate with her to no avail. We knew she had a Do Not Resuscitate (DNR) status and we knew she was really sick, but we had no idea it would happen so quickly!
Since there was no response from either me or the intern that I was following, she mumbled a hasty, “I’ll go call the family,” and left. I looked at my intern for guidance and I saw that he was staring at the floor, hands resting on top of his knees. It was a surprise for me to see him like this, far removed from his usual confident manner. Death had completely floored us both.
Doctors and other medical professionals have a more frequent and intense contact with death and dying compared to the rest of society creating a need for end-of-life care in medical curricula. However, multiple studies on medical students’ reaction to death show that most medical students feel inadequately prepared by their undergraduate medical curricula for experiences related to end-of-life situations. Death is introduced early in our medical training inside the gross anatomy lab. The absence of any identifying features made those hours spent in anatomy lab easier. Death takes its toll and what is left is an empty husk where a person used to exist. After anatomy lab however, there is very little exposure to the idea of death and dying. A survey of medical students from Duke University showed that the average medical student had experienced fewer than five patient deaths prior to graduation. In addition, few students experienced how to declare a patient dead and none received any formal training on this end-of-life skill.
I, on the other hand was not destined to be part of that statistic. After what seemed like an eternity, my intern rose up from his seat and dashed to another part of the hospital to seek out his senior. After discussing the turn of events and the necessary course of action, our little group convened in front of the door of the patient’s room where I received my first education on the procedure of declaring a patient death.
I lingered close to the door with a bit of trepidation. She was laying in the same position that I had last seen her two hours ago — face to the window, eyes closed. Her mouth was slightly open and for a moment, I merely thought that she was asleep.
“First, we need to check for reflexes. In here, we use two: the corneal reflex and the gag reflex.”
I watched in silence as both the resident and the intern performed these tests — all without a response. I watched as they both tried to feel a pulse. I watched with bated breath against all hope that there was still life ebbing underneath those veins. I let it out, deflated when both of them shook their head no.
As soon as we walked out of the room, I overheard my intern echo the exact same thought in my head. “Do you think we did anything wrong?” A hundred what-ifs welled up inside me. Was there truly anything we could have done to prevent this death? Modern medicine views death as something that can be resisted, if not avoided. This view of death is further compounded upon by modern society’s view of death which delegates all responsibility to physicians. While it is widely accepted that death is inevitable, it is the physician’s task to ensure that the patient is as far removed from death as possible. As Rudyard Kipling in his address to the medical school of Middlesex Hospital stated, “Death as the senior practitioner, is always bound to win in the long run, but we patients, console ourselves with the idea that it will be your business to make the best terms you can with Death on our behalf; to see how his attacks can best be delayed or diverted.” Little wonder that throughout medical education, death is continually seen as a failure.
Although medical schools are now integrating end-of-life care in its curricula, medical education should also engage students in a frank discussion of death and dying. Only by facing death head-on do we dissipate its power over us. The fear of the unknown has always been part of death’s icy grip over us but what if we learned to “disarm him of his novelty and strangeness, to converse and be familiar with him” as Michel de Montaigne recommended many centuries ago when death was commonplace and lifespans were short. Had I chosen to avoid that room, I would have missed out on one of the most important lessons in my medical education.
Each one of us has ideas surrounding death. I have always imagined death to be more dramatic than what I had experienced. In my mind, I keep seeing an entire healthcare team running back and forth — all working together to snatch the patient away from the jaws of death. However, my patient simply slipped away quietly, almost underhandedly. The way that she passed away seemed natural — as if she were merely falling into an eternal sleep. Gone was the drama, the action, the struggle for life. In its place was peace and acceptance of the inevitable.
This in turn gave me reason to think that perhaps, death is not a failure of medicine but rather a crucial part of being alive. Oftentimes, the best lesson in learning how to live is learning how to die as we see in the works produced by the likes of Oliver Sacks and more recently, Paul Kalanathi. As surgeon and Yale professor Sherwin Nuland wrote, “We die, in turn so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.”
Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.
By Samuel Harrington
The blessings and curses of families are not limited to holiday gatherings, graduations, weddings and funerals. They also exist at the transition of the matriarch or patriarch from life to death.
Like many elderly Americans, my father wanted to die at home. He was clear on that point. But also like many elderly Americans, he gave mixed signals about what treatment he would accept or decline with that goal in mind.
So when at age 92 my father began his decline from aging with grace to decaying from old age several years ago, my sisters and I began creating a plan that would allow him to reach the end as he wished.
First, we reinforced his household help. Then we scheduled a series of periodic days-long supportive, reconnaissance visits. (None of us live near him.) My father told us that he did not want to be resuscitated if he collapsed. But how should we deal with a nonfatal emergency without losing him to overly aggressive care? Would it be possible, in fact, to do nothing?
My siblings deferred to me, the only physician in the group, for medical advice. My oldest sister was the first to visit his apartment in our new rotation. Knowing his desire to die at home, she was anxious about what she should do if something happened, and she peppered me with questions.
“What should I do if he falls and hurts himself?”
“If he is in pain, call 911, then call me.”
“What should I do if he seems to be having a stroke?”
“Call me. And if you can’t get me right away, call 911.”
“What should I do if he gets pneumonia?”
“Call me.”
“What if I find him dead in bed?”
“Wait until he is cold and blue, then call 911.”
“Okay. I get it.”
After digesting my responses and discussing them with our two other sisters, she typed up a plan that carefully explained our reasoning. She (or whoever was visiting) was to call for help if our father was in pain. Whoever was in attendance was not to take action about other medical problems until I had a chance to weigh in.
Most families are not as united as my sisters and I were around the concept of a painless death at home. If the opportunity for such a death arose, we would seize it. This is what his advance directive stipulated, and it is what he frequently verbalized. “I have lived too long” and “I want to wake up dead” were his mantras. We wanted to honor his wishes.
Participation in the slow decline of an aged parent comes with obligations. There are dues to be paid — for example, showing up regularly for visits, no matter how inconvenient, and taking time to check in with siblings and provide detailed updates. Teamwork, coordination and cooperation help smooth this emotion-wrought journey. When family members do not or cannot work through disagreements, the result can end up punishing the person everyone is trying to comfort and protect.
Unfortunately, my experience as a physician and hospice trustee has shown me, an odd sort of competition can crop up in these situations. Some patterns are predictable. The most common is when siblings compete to prove who cares the most. This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments.
Other patterns are less predictable. In some families, a previously restrained sibling will assert dominance as the designated agent or proxy with power of attorney for health care. That one child has been designated as health-care proxy is not to be envied or taken as a sign that he or she is preferred over another.
Sometimes a financially successful sibling will dominate the decision-making, thinking that the managerial skills that built their business will now translate into medical decision-making ability.
Frequently, religious schisms will arise. I have seen, for example, one sibling’s conservative religious belief that the patient should fight on compete with another one’s new age spirituality urging everyone to “let go.”
The fault lines in decision-making that result from any of these scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home.
Even though a single person (the competent patient or the health-care proxy for an incompetent one) has the technical responsibility and authority to make difficult medical decisions, the choice to accept or decline a high-risk procedure — such as heart-valve replacement or emergency surgery — is usually the result of a discussion among family members during or after a consultation with the treating physicians.
This is because these discussions most often involve a sick, weak, impaired elderly parent or grandparent and a de facto family committee. It is the rare physician who will exclude family members from a consultation and limit the discussion to the one with power of attorney. It is rarer still for a physician, in the heat of urgent care, to parse the advance directive signed by the patient specifying what they do — and don’t — want if an agitated family member is demanding action.
Doctors are most comfortable proceeding with a high-risk treatment or withdrawing life-sustaining technology such as a mechanical ventilator when the family is unified. On the other hand, if the family is fragmented, doctors are more likely to move the conversation toward, and then proceed with, what they think is “best.” Often this will be an expedient combination of what is medically acceptable, legally conservative and reflective of the doctor’s best interpretation of the family’s majority opinion, even if it defies the patient’s wishes. What the doctor thinks best will also likely be influenced by his or her own end-of-life philosophy.
I have seen many families unable to come to agreement. I have seen many patients overtreated or undertreated in defiance of their wishes. I have seen agonizing scenes of dysfunction, such as a son demanding that cardiac resuscitation be performed on his just-deceased mother. This situation occurred because the mother did not include him in her final conversation with physicians, when she changed her status from “full code” — which had instructed them to intercede if her heart stopped or she stopped breathing — to “do not resuscitate.”
Although my family was in good agreement about my father’s wishes to die at home and to take no measures to prolong his life, our tools were limited. He was not yet a candidate for home hospice — that requires a life expectancy of six months or less — and a new type of very specific advance directive (called a POLST order) was unavailable to him.
In the absence of such orders, I could think of various scenarios that would test our teamwork and resolve.
What if our father developed exceptionally upsetting symptoms such as seizures or massive bleeding from the bowels? What if he became unmanageably delirious? What if the “need” for emergency surgery arose because of a bowel obstruction or a fall with a major fracture?
Would the pain compromise his resolve to use such an acute medical problem as an “exit strategy,” a way to die naturally? Would one of us become guilt-ridden about our “active passivity” regarding medical intervention? At the very end, the inability to “let them go” is a common development.
Fortunately for my siblings and me, there were no dramatic decisions to make in the two years between our first family consultation and my father’s death at age 94. A year before his death, he had stopped seeing his physicians for checkups. Six months before his death, he enrolled in home hospice, and three months before the end, he stopped taking his non-palliative medications (blood pressure pills, cholesterol lowering pills, water pills, potassium supplements).
“This will be our last visit,” my father said as I kissed him goodbye and left for the airport following a 10-day visit. He was prescient. My oldest sister arrived the next day, and he died two weeks later. I was tempted to return as it was clear the final day was approaching, but there was little point. We had all said our goodbyes. We had all reconciled ourselves. The hospice nurses were visiting him daily, and he was protected, as he wished, from aggressive intervention. The eldest embraced her responsibility to care for him, and the rest of us embraced our obligation not to interfere. We were a team. We were his family.
Harrington, a retired gastroenterologist and former hospital trustee in the Johns Hopkins Medical System, is writing a book about end-of-life decision-making.
Physician Orders for Life-Sustaining Treatment, or POLSTs, are available in about 25 states.
Unlike a traditional advance directive, which expresses wishes in general and requires interpretation by emergency and hospital physicians, POLST orders are developed and signed by the patient’s primary-care physician to expand “Do Not Resuscitate” orders to include options for comfort care only or to set limitations on breathing support, feeding tubes, antibiotics, transfusions, etc. When they arrive in the emergency room with the patient, these orders are immediately implemented and require no interpretation by emergency physicians. They are appropriate for seriously ill or elderly, frail patients.
More information about POLST can be found at polst.org.
Hospice care provides a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.
By Melisa Rile
Renee Beccue
Renee Beccue helps ease the process of dying.
She is an on-call registered nurse with Lower Cape Fear Hospice in Wilmington. Beccue, originally from Buffalo, N.Y., had primarily worked in intensive care units with burn patients.
She had accompanied doctors when they announced deaths of patients to their families and saw that this experience could allow her to transition into hospice nursing.
“Hospice and palliative care is a growing field,” said Beccue.
Part of what hospice care provides, is in-home equipment for patients, such as hospital beds, so they can spend their last days in the comfort of their own home. There is also a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.
And while hospice doesn’t provide in-home, around-the-clock medical care, it does have providers on call to help manage medical needs.
That’s where Beccue comes in.
Beccue doesn’t have a fixed caseload of patients, but she receives calls at night when hospice patients are in need of medical care that the family or caregiver feels is outside their capability. Beccue travels to a few counties for on-call needs, including Onslow and Pender as well as New Hanover.
The calls she receives can be anything from discussing fall prevention to pronouncement of death. Part of the medical care received in home is to help the patient remain in the home with fewer trips to the hospital.
“We try to prevent readmission to the hospital,” Beccue said.
Her care as a hospice nurse is twofold, therapeutic listening and education. Education consists of teaching the family or caregivers the basics of caring for a sick person who will continue to decline. Beccue calls this the “palliative care mindset, not curative.”
She teaches the family to change the bed and bathe the patient while he is still in the bed. Beccue says the care needs of hospice patients are constantly changing because they continue to get sicker. She also teaches the family what they can expect to see from the patient depending upon his disease.
Beccue also helps patients understand what they are experiencing. She consoles them and emphasizes the importance of “judgment-free” care as a hospice provider. Beccue realizes that many people are not familiar with the medical terms being used and she sincerely tells families and patients to call her with any questions.
Beccue primarily tends to the patients’ medical needs, but in the process of dying, people often work through a life review. Many patients do not truly grasp their prognosis for a variety of reasons until Beccue arrives at their home. She sometimes helps patients face the truth that she has been assigned to them because they have a prognosis of six months or less left to live.
“That’s when they cry,” Beccue said.
She tries to be the voice of reason and help them to understand that the feelings they are experiencing are normal. She can assist with adjusting medication when anxiety is overwhelming and to help mitigate physical pain.
Beccue says it’s important to allow patients to feel. “You can’t make a stage 4 diagnosis nice,” Beccue said.
She has seen patients move through bitterness, anger and unresolved issues and hospice does provide social workers to help counsel the patient through that process.
While death is frightening for many people, Beccue sees it as a part of living. And death isn’t all scary and sad. Many times she turns on music for patients, helps them sit by their favorite window and watch the birds they’ve enjoyed their whole lives. Also, the presence of beloved pets is important to comforting patients.
Some patients want to sit and look at the garden they worked in for years. Beccue says one patient asked to sit by the window and watch the golf course every day.
After years of being with hospice patients Beccue has learned a few tips about working with the dying. She recommends being upfront and honest about prognosis, allowing honest feelings about that prognosis and ultimately finding peace and joy in death, which is the ultimate rite of passage for all of us.
Most of us won’t get any say in how or when we die. But even knowing that, the question of what makes a good death feels important, even urgent. What is the best that we can realistically hope for, at the end? If you subscribe to an organised religion, you might focus on living virtuously in the hope of a posthumous reward. The rest of us need to know how to go about dying with some dignity and grace, amid the grubby imperfection of the real world. The Australian writer Cory Taylor managed it, and she has left us her wisdom and experience in this book, which is part memoir, part critical examination of western society’s dysfunctional relationship with mortality.
Taylor was 60 when she was told that what had started off as a melanoma was now incurable cancer. She had already witnessed the reality of “dying badly”: both her parents died in nursing homes after long and humiliating descents into dementia. The last time Taylor saw her mother, she watched as a nurse changed her nappy. “The look in my mother’s eyes as she turned and saw me,” she writes, “reminded me of an animal in unspeakable torment.” Taylor’s one comforting thought when she received her own terminal diagnosis was that she wouldn’t have to go like that: she had the time, and the mental capacity, to find her way towards a better death.
En route, she became something of an ambassador for the dying. When she first found herself in a ward of terminally ill people, it was as if she “had stumbled out of a land of make-believe into the realm of the real”. Death, she realised, was the great unmentionable; a “monstrous silence” that left those facing it lonelier then ever. There was very little help on offer to a non-religious person who wanted to die well. Why, she found herself wondering, do doctors avoid talking about death with their patients? Why is there so much funding for hugely expensive cancer treatments, even when they are ineffective, and so little for research into palliative care and support? And why have we allowed the debate about assisted dying to be dominated by religious groups?
Taylor was tempted by assisted dying. After several almost comically unhelpful interactions with medical professionals (her family doctor, referring her for counselling, wouldn’t describe her problem as “dying” but rather as “adjustment disorder”), she joined Dignitas and Exit International. She even got as far as ordering a euthanasia drug from China. But though the knowledge that she could end it herself was important to her, she couldn’t actually do it. In the absence of a supportive legal system, she would have had to take the drug alone, and she worried about the impact on her loved ones and the people who found her. She didn’t want the word “suicide”, with its connotations of mental turmoil and despair, on her death certificate.
“It surprises me that I have any qualms at all,” she writes of that decision, “since I have never thought of myself as a person of particularly high moral standards.” Along with the precision of her writing, it is Taylor’s lack of self-righteousness that lends this book its very special quality. She doesn’t embark on a “spiritual journey”, set herself up as any kind of guru, or even offer answers as such. There is no phoney narrative of redemption – indeed, much of the narrative is devoted to exploring rifts in her family which remained irreconcilable to the end. There was a depressed grandmother, and a property dispute in her mother’s generation; then her mother and father divorced after many miserable years in which he dragged his family around the world on a series of wild goose chases. Taylor was estranged from her father when he died, and she wasn’t on particularly good terms with her siblings. “A different family might have managed to put all this history behind them,” she writes; hers did not.
In the absence of happiness ever after, we are bound to hope for some sense of resolution. Taylor, for whom writing was an obsession since childhood, focuses on remembering the experiences that shaped her character, and finding the right words to describe them. She is sparing about what she includes, but each scene has a luminous quality, a little like her description of the light in Fiji, where she lived briefly as a child: “so pure that it infused every object with an extra intensity, so that a flower was not just red, or a blade of grass just green.” We see the moment in which she first recognised desire (in the eyes of her mother, meeting a handsome Texan), and her first intimation of mortality, watching a kookaburra swoop down from a branch to kill a skink. We see her going to buy her Fijian school uniform, “pink, mint-green … open-weave cotton with its delicious sugary smell”.
She seems to say that our lives, in all their glorious messiness, are their own reward. “The accident of birth is just that. And so is everything that happens afterwards, or so it seems to me.”
Taylor died in July, shortly after this book was published in Australia, and there is no end note to tell us whether her desire for a good death was rewarded. Naturally, I googled it: she died peacefully, surrounded by her family. Somehow I knew that would have been the case. But then again, perhaps she just got lucky.
